Spirited Blessings

Important Ontario IPRC/IEP Info

2012-01-23T20:58:00.001-05:00

So the Ministry of Education in Ontario released this memo in December 2011.

http://www.edu.gov.on.ca/eng/general/elemsec/speced/2011CategoryException.pdf

The things that it states are really straightforward - many outside Special Education will read it and be left wondering - "This required a memo?" after all, of course ADHD and Tourette's and other disorder/conditions can have an impact on a child's learning. And if a child is experiencing challenges in the classroom we would move to put things in place to help that child - right?

Well, until this memo (and let's face it, long after this memo), many schools and school boards were denying kids IEP's (Individual Education Plans) - sighting that the child did not meet the criteria set out by the Ministry in the form of five categories (Behaviour, Communication, Intellectual, Physical, and Multiple). They argue that ADHD, for example, does not fit into the above classifications and thus they were not obligated to provide special education services for a child only diagnosed with ADHD (the emphasis on "only" is a sarcastic one because if you have a child with ADHD you know what your child requires to learn and often times it is above and beyond what is in place for them).

But this memo changes that. Or at least it would seem.

I'm eager to see what the schools do in response as parents begin to bring forward this memo and ask that their child be accomodated for his or her unique learning needs. Of course I would suggest that families use this memo to start a collaborative dialogue rather than an "see, I TOLD YOU SO", "in your face" kind of situation.

For our youngest, nothing changes as the school has been AMAZING at putting things in place even though he only has an ADHD diagnosis (once again an attempt at sarcasm).

If this affects you I hope you will leave a comment. I'd love to know if you are able to use the memo to advocate for your child.

Our Journey with Sensory Issues - Part One

2012-01-16T12:51:00.001-05:00

I was asked by someone to describe our experience with sensory issues and I figured I would post it here since I have been meaning to write this for quite some time.

In Canada, Sensory Integration Disorder (SID) and Sensory Processing Disorder (SPD), are not as well known as they are in the United States. Add to that neither one is listed in the DSM-IV (the diagnostic manual a.k.a. 'the bible' for diagnosticians, covers all mental health disorders for children and adults) and it makes it difficult to get 'professionals' to take you seriously and give you and your child the help you seek.

If you have reached this point and are all "What in the world is this chick talking about?" - well, I could try to go into detail about SID (I'll refer to it as this since it is what is written in the reports that we do have which actually reference a sensory diagnosis for our son) but really there is a vast wealth of information at Sensory Processing Disorder Foundation (U.S. based) as well as Hartley's Life with 3 Boys (a website and blog of a mom focused on SPD). So please do go to those sites but don't forget to come back here.

When we adopted C he was three and a half years old. I was (and had been for quite some time) working in early intervention. I had read up quite a bit on sensory issues and techniques for children I provided service to. Information was fairly scarce but luckily we had the book The Out of Sync Child by Carol Kranowitz and Raising Your Spirited Child by Mary Sheedy Kurcinka.

Amazingly with all that personal knowledge and resources right in front of me - it took a while to put it all together that many of the issues we were dealing with individually added up to sensory integration disorder. Much of it looked like something else (like ADHD) and our days were such frenetic world winds that reading a book or trying to make a plan was far from my grasp. He seemed to be a sensory seeker AND avoider. Loud noises like the vacuum or hairdryer seemed to actually be painful to him and he would cry and beg me not to turn them on. It took us a few months to realize part of the reason he would act out while shopping would be that he needed to use the washroom but hated the toilets and hand dryers in most stores so he would act out so we would take him home. He hated tags in his clothes and it would take him months to adjust to wearing pants and socks when the weather turned cold. He didn't like hugs or tickling and just touching him on the arm made him recoil and even sometimes yell out "YOU'RE HURTING ME", which was always so much fun in the middle of a store or parking lot. But he would also run into people and bounce off them, never seemed to register pain and never seemed to get dizzy.

On one occasion early in our adoption - he fell off the top of the monkey bars and landed on his face before I could catch him (he had poor protective reactions as well). As I rushed over to him I could only imagine what damage had been done - he stood up and caught his breath and much to my amazement just resumed his activities. We soon learned that he would only stop and register pain was when it was accompanied by blood - even then we weren't sure he was actually registering the pain but rather the visual let him know he should be in pain and he would act accordingly.

At school he was constantly roaming the room, touching things and people. He licked things and put things in his mouth when he should have outgrown that behaviour at a much younger age. He had his fingers in his mouth so much that for most of Junior Kindergarten he wore thin gloves to try to help his red and raw fingers heal. He never seemed aware of where his body was in space resulting in huge issues particularly when lining up at school (which you do a lot of as a Kindergartner). You can imagine that kind of behaviour wreaks havoc in a classroom with even the most experienced and understanding of teachers.

Those early years were hard. We were discharged early from preschool services (long story for another day) and the next step services were saying they had nothing to offer us. School Health Support Services who provide Occupational Therapy to school children were very clear that they would only look at fine motor and daily living skills (like dressing, eating) and they would not provide any sensory therapy or assessment. Without more published studies and Evidence Based Practice, Sensory Integration Disorder (also called Sensory Processing Disorder) was not seen as "legitimate" in our community. I tried to find a private practitioner but at that time came up empty handed.

So we trudged along on our own - piecing some parts of the puzzle together on our own. I did figure out that deep pressure seemed to calm him and he began to allow us to give him "Big squeezy hugs" (bear hugs) that typically resulted in visible calming of his whole body at least for a few minutes. We kept a supply of "real fruit" fruit snacks on hand to reduce the need to chew on his fingers or mouth non-food items. He couldn't seem to get the hang of chewing gum (and still can't without swallowing it) so we probably looked like we were training a family pet - constantly pulling out a fruit snack out of our pocket and popping it in his mouth.

In late 2005 we were finally seen at the Child and Parent Resource Institute (CPRI) in London Ontario regarding C's Tourette Syndrome. As part of the overall treatment plan created with us during our first visit to CPRI, C was referred for Occupational Therapy for both fine motor issues and a sensory assessment. In August 2006 we began the OT assessment and to this date it was one of the most helpful, eye opening services that we have received as a family.

To Be Continued . . . . Part Two will be up soon: How Does Your Engine Run?

Therefore I Share

2011-12-08T09:51:00.000-05:00

Mental Illness is nothing to be ashamed of.

It is not the fault of the person dealing with it.

It is hard for all involved. The individual, family, friends . . .

Mental illness is nothing to be ashamed of

How many times have I said that in real life, on Facebook, on my blog?

I tell my son this all the time. I tell him that his Bi-Polar and OCD and other illness/disorders are a pesky part of him but they do not define him and they do not make him less of a person. I tell him that he is my hero - having so much on his plate yet getting up each day with a smile on his face. And when it is a bad day (or week) I tell him that's ok too. He's entitled. Eventually he will get up again after we help him fight off the demons that haunt him in his head.

Mental illness is nothing to be ashamed of.

Just like people are not ashamed of cancer. People are a lot of things at Cancer - scared, mad, frustrated, devastated, determined to name a few. But people are not ashamed of cancer.

I suffer from depression and anxiety. It's been mostly under control for many years now but you can read a little about previous times I was struggling here and here and also here.

A few weeks ago it got really bad really fast. It seemed to hit me out of no where. My brave and amazing husband and friends made sure that I got to the hospital. I stayed for 3 weeks. While I was there I was almost successful in hanging myself with a sheet. Yes it was that bad. I was not myself. I was over run with irrational thoughts and overwhelming emotions. I thought the world would be better without me. I thought that my pain, that feeling of deep emptiness, would finally be gone if I was dead. I felt so very very desperate.

I was and still am battling a mental illness. I probably always will in some way.

I share this because I need to not be ashamed. I cannot teach my son and society to accept mental illness if I am ashamed and keep this as a secret. Therefore I share.

Celebrating the "lasts"

2011-12-02T15:55:00.000-05:00

Many times we celebrate the "firsts" in life (first tooth, first steps, first day of school) and we let the "lasts" slip through our hands and memories. Probably because at that moment we have no idea it will be the last time, there is no memo, no handbook that says "WARNING - LAST TIME HE WILL HOLD YOUR HAND IN PUBLIC"

My youngest, J, is very aware and although he is very affectionate at home he long ago stopped letting me hug and kiss him in front of the school.

Today he came out and was excited to tell me about the play his class is putting on. Like it was the most natural thing in the world he slipped his hand into mine. I realized almost immediately it felt almost foreign. When was the last time I had held his hand?

I almost said something in the heat of the moment. But I quieted myself and tried to enjoy the brief walk home. Wondering at what moment he would realize what he was doing and slip his hand away. We made it to the bottom of the driveway with his hand lovingly in mine.

I willed myself to enjoy every moment, just in case. You never know when it might be a "last"

Injustices and being complicit

2011-11-25T09:28:00.000-05:00

I often work hard to make sure I don't waste time on guilt . . . I lump it with regret, a natural human emotion but not very helpful or productive. I prefer to try to be forward thinking, spending my limited resources on finding solutions and making change for the better instead.

With that said, I am overwhelmed with guilt, remorse, regret and deep seeded anguish over what has happened to my son and what is happening to hundreds of other children in my home community at the hands of treatment centres. I hope to be able to make changes and I have removed my son from that environment. A newspaper story about one of the treatment centres in town has brought it all to the forefront today.

I grapple with what I will do. Do I go forward with our own story of the other agency, who from the description of the agency in the paper is doing even WORSE things??? If I do it puts my family at risk in ways I cannot go into on this blog. But I have to do something.

Years ago I bore witness to many injustices to vulnerable people at a place of employment. I took small stands back then but my complicity still haunts me to this day.

I will have to do something moving forward - for all those children whose parents don't know or who don't have parents. I'm just not sure how to proceed at this time.

It's All Too Much

2011-11-21T08:47:00.000-05:00

I know I haven't been posting lately, but does the old adage - "no news is good news ring true"? Yes, No, I'm not really sure.

The boys themselves are doing well. I'd even go so far as to say the are flourishing

Me, not so much.

I'm in a deep dark confusing and often lonely place.

But I am getting help. I am reaching out and trying to let people in. I have sought professional intervention.

I so badly want to write and to pour out my heart and soul but it just isn't meant to be at this moment.

But I'm still here and that counts for a lot right now

Cue the Music

2011-09-01T14:20:00.000-04:00

School in our part of Southwestern Ontario (Canada) starts next week.

Cue scary shark music ending in a shrill shriek

But wait . . . Usually by now I am saying hourly prayers under my breath and wishing desperately that I had a vice that would get me through the last few days of summer vacation while AT THE SAME TIME wanting nothing more than to curl up in the fetal position in a dark room in order to get away from the impending doom that is school for my boys.

This year . . . I posted a thank you to summer in my Face Book status. I posted lots of awesome pics here on my blog. Sure there have been bumps in the road this summer. A few were pretty significant and usually would have brought me to my knees. But this year - we are all managing.

Last night I went across the border to do some shopping with my very good friend and we stopped at the Olive Garden (which we no longer have in our home town, sigh) to ~~absolutely stuff ourselves~~ eat and enjoy each others company on this rare ocassion for as long as possible. Amidst fits of uncontrollable giggles that left my stomach hurting and tears running down my face - we commiserated. We talked about school and what we were doing to prepare for this year as all four of our boys have unique learning challenges at school.

I admitted to her that I haven't done any of the information packages and personal introduction letters to the teachers that I usually have ready in July (lol). I just yesterday had a brief conversation with C's teacher to book a quick visit to school on Friday to ease his anxiety because I figured that was the one thing I can't skip this year.

At that moment I paused from stuffing my face and I said to my good friend "you know, I've given enough of my time, energy, emotions, tears and effort to school. I think I'm done with that for now".

And I meant it.

C is going to have a very strict and loud teacher this year.

I could choose to try and fight his class placement. I could try to get him moved. I could write letters, make calls, write emails, vent on Facebook and call upon all my advocate friends.

I could stay up til the wee hours tonight typing and cutting and pasting and printing and colating information, all the while trying not to be resentful or sad that there would be a strong possibility that the teacher wouldn't so much as crack the front cover on my carefully chosen duotang.

I could find myself lying in the bed, late at night, unable to sleep as I worry about the fact that this Grade 8 for C and he is woefully behind in using his laptop. That he struggles so hard to fit in and might feel rejected and isolated. That next year is highschool and . . . . .

but I stopped myself

I am going to choose instead to be believe that after all these years the people at his school know him and are competent. I am going to believe that C has come so far that he can continue some of the self advocacy that he has demonstrated previously. I am going to believe that the people (peers and teachers) that we know and trust and who know and love our son will look out for him and let me know if something is amiss (as they have in the past). I am going to trust that the Principal and last years teacher chose his class placement for very good reasons and that they have everyone's best interests at heart.

I am going to choose to let go a little. I am going to trust what we have worked so hard to create to do its thang.

And I am resolute in my knowledge that should there be bumps in the road - I know how to handle them. I am bigger and stronger than any of those situations and I am supported by many many people who are also bigger and stronger and we will close ranks around C and help him, and the school, through anything that the universe throws our way.

We have done it before. We can do it again, but only if necessary

Because in the meantime - I plan to keep living and loving my life and doing things like canning 8 dozen jars of spaggetti sauce with a good friend that I just don't see enough of.

I will let some of our hard work do its magic while I dance and live off to the side

Cue party music

Our Magical Summer - Wordless Wednesday

2011-08-31T07:03:00.000-04:00

It is the 27th AGAIN!!!

2011-08-27T21:45:00.000-04:00

I really didn't think I would have it in me to get to my post for Hopeful Parents.

It's summer and things are of course hectic and overwhelming

But this year there are more laughing fits than crying fits

More meeting up with friends than cancelling plans

More crossing off the "to do" list than ever before

So it feels good that despite all this, or perhaps more so it has been inspired by all this,

I was able to make my Hopeful Parents post

If you have a minute, head on over to Hopeful Parents and check out the rest of it

In an Instant

2011-08-22T10:58:00.001-04:00

At 4:30p.m. yesterday my cell phone rang

Call display told me it was my parents

My heart sank

They never call my cell phone

I answered and I could barely hear my mother over the static and what I then realized were her sobs

I tried to steal myself for what might come next

And all I heard was Tornado

Photo from London Free Press

A Tornado ripped through Goderich, a gorgeous town dubbed "Canada's Prettiest Town"

Pretty much the entire downtown, known as "The Square" has been decimated

This was all just a few blocks away from my parents

Thankfully my parents have only suffered minor damage to their home

One man is dead and many others injured. My thoughts and prayers are with this man's family and with the entire town as they begin to take in the devastation that has occurred around them.

When you look at the pictures it is amazing that there weren't more casualties

In an instant life can change

Part Boy, Part Monkey

2011-07-31T15:35:00.001-04:00

J has always loved to climb. When he was 20 months old we had to take him out of his crib after one early morning when we heard a THUD and C, who was about 8 at the time, exclaimed "Wow. That was just like a cat!!!". Seems J climbed the rails, perched at the top and then jumped and landed on all fours, like a cat.

We went to Parent and Tot gymnastics and he climbed anything and everything. He was just like a monkey.

All of our windows and door jams have fingerprints, we even have an insane amount of fingerprints on the ceiling. His favourite place to hang out is at the top of a doorway.

At 2 years old I got lectured repeatedly by emergency personnel after J got away from me at an Adoption Family picnic, of all places, and he bolted right for the HUGE playground structure that probably wasn't really safe for any kid under 7. Even though I hightailed it after him, he managed to get to the top and pitch himself over the side (while trying to get on the slide). He landed on his face before I even got to the edge of the playground. Miraculously, he was fine. And to think he didn't even start walking until he was 18 months old.

At 3 years old his gymnastics teacher let the kids all have a turn trying to climb the rope. Most kids didn't even really make it off the ground despite some big efforts. Then it was J's turn. The rope went up to the ceiling - and that's high in this building that is basically an airplane hanger in size so you can imagine how high up the ceiling is. J climbed to the TOP. At first everyone was shocked and impressed. Then reality sunk in - he had gotten up but he had NO IDEA how to get down and he had climbed up using his bare hands. Let's just say his hands were very sore for many days but that didn't stop him from asking to do it again, sigh.

Thankfully he's always ok and he is surprisingly agile and strong. We took a break from gymnastics but I hope he will want to go back - he can do a mean hand stand and I'd love for him to learn how to do a proper (safe) back flip.

As much as we might gasp, hold our breaths and worry at times. It is certainly a gift that he has. And I'm a little jealous ;-)

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Gets Me Everytime

2011-07-28T07:13:00.000-04:00

He sits answering the serious questions

then actually asks if he can type the answers himself

quickly asking for help on how to spell words

I sit with my back to him, facing the other people - trying to make it seem less like he has an audience (not that we are kidding anyone - there are 5 adults in the room)

He gives an answer that ends in "balls"

He starts to giggle

The 12 year old boy in him just can't help it

He repeats it a few times, changing some of the other words but always adding "balls", pausing to look around to see our reactions

I keep my back to him

But my shoulders shaking from my laughter give me away

Apparently I too am a 12 year old boy

It's not his words, it's that giggle from the depths of his soul - the one we heard the first day we met him at age 3.5. It swooped in and stole my heart that day as it does today. I can be the stone faced mom under any other circumstance but that giggle

it gets me every time

Sunshine and Rainbows

2011-07-27T00:10:00.000-04:00

We just returned from two glorious weeks at a cottage.
I never thought I would type a sentence like that one (at least not unless it was a work of fiction).
In one sentence I wrote two weeks + cottage + we = glorious

Read the rest over at Hopeful Parents

Changes

2011-06-24T10:01:00.000-04:00

Please bare with me as I try to update the look of my blog. Of course I started tinkering with it when I really don't have the time and it's not even in the top 50 items on my "to-do" list. However I just found out (kind of) how to add pictures to the top header so I started playing with it.

My amazing husband has taken C with him to visit his mother for the weekend. J is at sleepaway camp (another post) so I have the house to myself for the weekend. Interspersed with lots of cleaning and organizing will be spending time with friends as well as meeting with my (very part-time) employer to pick up some contract work that will hopefully help pay for our family vacation this year - which we desperately need.

I'll be back.

Don't leave me over the colour combos and blurry picture on my blog - please? lol

Silver Lining

2011-06-16T09:17:00.000-04:00

Many of my friends joke about my propensity to always see the silver lining in stressful times. In my early adult years I saw it as a gift, after years of extreme parenting I see it as an absolute necessity.

I find it amusing that I can go through REALLY stressful and rough times, particularly when C is in a manic phase and surprisingly I am easily able to keep myself motivated and upbeat through much of it. I can acknowledge that it is stressful, it sucks and that I am eager for it to end BUT I also have no problems seeing the silver linings.

Then there are days like yesterday and today. Yesterday I woke up late since neither mine nor A's alarms went off. In 18 years that has NEVER happened. But we still woke up in time for everyone to get ready for school. Everyone else coped - even our boy with a strong, strong need for routine and structure. Everyone else left the house on time and with a smile. Not me. I dragged. I had missed my shower, I was behind on my own routine and I just couldn't seem to get back on track. I was just about to ~~hop~~ drag my butt into the shower when the phone rang. It was the school (and yes I considered not answering) and C was not feeling well. So I had to drag my stanky self down to the school after racing to brush my teeth, comb my ~~bird nest~~ hair and throw on deodorant and clothes (aren't you glad, reading that, that I completed ALL of those VERY necessary steps before leaving my house?).

On the way to the school I noticed my one sandal was flopping around on my foot. But I didn't have time to stop and inspect. So I continued on, trying not to trip over my own feet. Got C home and had to argue about why I wasn't going to let him watch a movie now that he was home. I still hadn't eaten and then the phone calls and emails started coming in. There is finally movement with regard to funding and C's supports and getting this all sorted with his new provider and of course it all needs to be organized and carefully orchestrated and although I TRIED to stay out of it, in the end, there were just pieces I had to take care of if I didn't want to have to deal with a bigger fall out later. So I just kept breathing and made the calls and sent off emails all the while redirecting C. Thankfully his amazing support worker was due at 10 so that helped immensely.

Then I got a call I needed to have some papers in for funding reimbursement and oh did I mention that we are in the midst of a postal worker lock out?? So I can't mail the forms and the office isn't local and the only other option is fax. I asked if I could scan and send an electronic PDF (much more appropriate for the year 2011) but was told no. So I had to have A come home at lunch to get the forms to fax from work for me, which was ok because he had also forgotten the lunch that I had made him at the expense of having my shower.

I then discovered that the problem with my shoe was that I had let C wear them (please note - they are a man's sandal I bought cause they fit my wide feet wonderfully) because he grew YET AGAIN and did not have sandals at the time. Of course he didn't tell me he ripped the strap right out of the sole. sigh.

Then I tried to sort out pharmacy woes. Well really it is not the pharmacies issue AT ALL. They are awesome. It's all because the boys are going to camp and the restrictions on meds like Concerta and the fact that we couldn't order more til today (oh reminder to go to pharmacy) and C's meds are not all on the same schedule because of various med changes over the past year so its a nightmare right now that just haven't had time to sort. Add to that I have misplaced a prescription for a different med. ahhhhhhhhhh!

Then I went to get J at school at the end of the day, still not having had a chance to shower and while there a bird shit on me!!!!!!

The evening was slightly better

Then this morning I was supposed to head out of town for a meeting. I got up on time, I showered, I had everyone ready and out the door. Went to leave and .. . . .

I have no house key

I messed up - left it for someone last week that stayed with my kid. That person took it with them and I did remember to ask for it back for forgot to follow up.

I can't leave my door unlocked of course and to have A come home would have taken to long as I have JUST enough time to get to this meeting IF I leave right when the kids leave for school.

So silver lining to all of this - I don't have to spend 4 hours in the car today and everyone thinks I am out of town at a meeting so I should be able to get lots of things accomplished.

My Amazing Man

2011-06-08T11:38:00.000-04:00

Part of my commitment to myself and to my family is to do better taking care of myself. I feel weird just even typing that as I used to always roll my eyes when people would say that "But hon, you have to do things to take care of you!" and I would smile politely and say "I know, I know" and then walk away rolling my eyes saying "As if . . . ".

But if I learned anything last year - it's that I absolutely must find ways to take care of myself. So today I had an appointment and while I was there I shut my phone off. Yup, shut it off. Because, really, I NEEDED that therapy appointment and even if the phone rang, what would I do?? Walk out of an exceptionally expensive and important appointment to race accross town to do what exactly?? And truth be told I haven't had a call from the school (other than for legitimate illness) in a very long time.

I guess we were overdue.

At the end of my appointment I looked at my phone. 2 missed calls. From the school. Funny thing was though, I didn't panic. My stomach didn't bottom out. I thought to myself " I sure hope they called A". A further look at my phone told me that they had and he had messaged me to say that he knew I was at my appointment (have to LOVE that synchronized Outlook calendar on our Blackberry's) and he was heading to the school.

All this began occurring at 9:30. By the time I got home at 10:30 C was settled at home with a worker and A was on his way back to work. Everyone was calm. C had balked at doing class work (probably partly the work, partly the heat and partly the anticipation of a HUGE purchase that he made for himself that was due to be delivered today - more on that later). Anyhow, instead of blowing up in class he removed himself to the washroom. The call from the school was in case he blew completely. Instead he managed to pull himself together and get back to class for a few minutes before A even got home.

On my drive home though I admit I worried how A would react. Would he be frustrated or even angry at the wasted drive home in the middle of his work day? Instead I heard how he discussed it calmly with our boy and made sure to congratulate him on his ability to work it through and go back to class.

He's amazing that man of mine.

Uncondtional

2011-06-07T14:01:00.000-04:00

There has been so much happening and I will be getting back on here more because in the end it is important to me and I enjoy writing and having a journal to look back on. I'd also like to think that even if my words and/or experiences connect with even one other person that is an amazing thing.

Before I get bogged down with everyday life and trying to catch up on this poor neglected blog - I wanted to share something with you.

We had a meeting today with C's new service/support provider and CPRI to begin this transition process. There were 8 people around the table. We all sat down and settled in and then there was silence - I looked around and realized they were all looking at me. It was a little overwhelming for a moment as the meaning of this sunk in - this was truly my meeting on behalf of my son and our family. TRULY our meeting in every sense of the word and to start off they were respecting my role by allowing me to run the meeting.

I don't think I had ever realized that this had never happened before. I had been involved in some meetings more than others depending on the circumstances and I would never had thought that everyone sitting back and waiting for the parent to begin would be that powerful. It is. Once I caught my breath I told them what I was thinking and there were these pained looks on every face - they all felt that it was a shame I had not experienced this before. We quickly moved on and I set the stage for what I wanted to achieve through this meeting.

Things progressed and people talked and shared and strategized. Then I felt tears coming to my eyes as I came to another realization.

This was the first time I was in a room surrounded by people who had supported my son in the past as well as people who would continue to support him in the future and every single person was there in a positive supportive role. Not a single person was frustrated with me, angry with me, intimidated by me. Not a single person had come in with an agenda of their own. Not a single person felt they knew my son better or felt that if they could just get me to understand that their way was better than mine. Not a single person felt that isolation, punishment and being harsh was the way to go with our son.

The room was filled with intelligent, articulate, skilled individuals who wanted to support our family in positive ways. They acknowledged my key role as his mother and only wanted to truly support our family in whatever way we see fit - not try to make us fit into a mould they had already poured.

Unconditional respect and acceptance for our family and our son.

Hunh, so that's what that feels like.

A Different Kind of Whine

2011-05-30T09:29:00.001-04:00

I've written a few times about CPRI - the treatment centre we go to that is 200km (124miles for my American friends)away from our home.

About a month ago I received an email inviting me to speak "for a short time" at the Volunteer Organization of CPRI (VOCPRI) annual fundraiser. This year they are trying something new - it is called Wine & Design and features interior designer and TV personality Tommy Smythe (Sarah Richardson’s aptly dubbed “design sidekick” in Sarah’s Cottage and Sarah's House - not sure if folks in the US or elsewhere get to see this show).

Anyhow - I had wanted to go to this event but wouldn't have been able to justify the travel and ticket cost (though how I would love to support CPRI even more than we do cause of all they have done for us but it's just not in the cards with me not being able to work). So when I got the request I was ready to say yes to support CPRI, then they threw in the fact that I could bring a guest which was very sweet and very much appreciated.

For someone who spends so much time in careful deliberation of so much of my life, I also have the tendency to act impulsively. I said yes almost immediately.

After I said yes, within 5 minutes I had posted this on Facebook:
really needs to learn to not respond so quickly to emails . . . rash decisions lead to wardrobe worries, stage fright and public discussions about her "puppies" :-)
The "puppies" part was because I had private messaged a friend (a highly stylish and amazing friend who loves to develop fundraisers and then dress up in gorgeous outfits to attend them and happens to be about the same size as I am) about wardrobe concerns and she accidentally posted on my Wall that of course I could "shop in her closet" and she thought she knew the perfect dress that would allow for my ample cleavage (her term was "puppies" LOL).

The event is this Thursday. I have spoken in front of groups before and actually public speaking doesn't usually bother me at all if I am comfortable with the task/topic. Even though I am a very anxious and shy person (I am nervous about any expectations of small talk before & after I speak!!!) I actually don't mind standing up in front of a crowd. To be truthful I would love to give presentations and workshops for a living. However, that's just a dream that I haven't actually shared with many people and I haven't done much to accomplish that dream. I have never done anything quite like this before.

I will have people's undivided attention for 3-5minutes. Doesn't sound long but I know that it is when you are in front of a room full of people. All the fundraiser people have asked me is to speak a little about our family and the services we have received, they are also wanting to raise general awareness about Children's Mental Health. I find it ironic that I have spent the last 9 years trying desperately (and often in vain) to get people to listen to me. Now I'm being asked to speak and given an open opportunity to focus it in anyway I choose.

It feels like a daunting task.

I want to make people really listen. I'd like to give them a glimpse into what it is like to live day in and day out with the struggles that families who travel to CPRI have to. I would like to challenge people to think a little harder about what they can do to help - whether it be to not be so quick to judge, to volunteer themselves in some way or (as is the point of the evening) to open their wallets and give generously.

I have 4 days (3 sleeps) to get something on paper. Tomorrow and Thursday I have to travel to CPRI for appointments. I still don't know what I am wearing and since I only own like 2 pair of shoes I think it's likely I will need to do some shopping. Basically today and Wednesday I have to pull this all together. Oh and our fabulous Home Support Worker is at training today and tomorrow and she comes in late Wednesday to be able to cover the evening for us.

I am open to any suggestions on what to say, what not to say and take a look at the event flyer and tell me what you think I should wear. The last time I went to a fundraiser was like, well, NEVER.

Unlike Last Month . . .

2011-05-27T21:39:00.002-04:00

. . . I managed to get my post up on time at Hopeful Parents. Go on over and check it out.

To the 16 year old me

2011-05-26T14:13:00.001-04:00

I've thought about doing this several times over the years and since I haven't been posting lately (I've been in a dark dark place but dragging myself out now) I thought I would jump back in with a little humour mixed in with my sincerity.

To the 16 year old Me (things I wish I had known Wayyyyyyyy back then)

1. You are NOT fat. I wish you could find a way to feel comfortable in your body and learn how to work your, ahem, assets. They are awesome, you are awesome and you will kick yourself later when you find out the guys you liked actually liked you but were intimidated (see point 2, 3 and 6 for more on this).

2. Wearing clothes 2 sizes too big does not help you hide what you think it does. Work with what you have, flaunt the awesome and at least wear the right size to cover the rest.

3. STOP being so freakin serious all the time!!!! You are young, healthy and the world is your oyster. Reach out to people who try to be your friends, don't shut them out. Party a little bit, make out with more guys. That demeanour that you have when you are shy and nervous - it comes off as being aloof and superior. Work on it, open up and allow yourself to be a little vulnerable.

3. Enjoy being able to sit on any surface in any configuration that you can for as long as you want. Before you know it when you simply sit on a chair your legs and butt will fall asleep and your knees and back will ache. You don't know how good you have it.

4. Your giving nature, your desire to help others - embrace it and run with it. Learn to harness it and use it effectively. Don't let it run wild and run you over and make you question your desire to make the world a better place. Compassion, empathy and understanding are gifts that you have been given. Find a way to celebrate your gifts without losing yourself.

5. You are stronger than you think. The next few years will be rough. so rough. You will make it through and not unscathed but believe it or not these very necessary and painful experiences will help you make it through some extremely difficult times in the future.

6. All those people who seem so self assured and stuck up at school?? Most aren't. Most are just as insecure, if not even more, inside. Some you will get to know later and you will be shocked at how much you have in common. No one feels comfortable going into the school cafeteria alone, some just hide it better. You are all struggling with who you are and who you are going to become (and many who made your life a living hell DO NOT go on to bigger and better things, just sayin).

7. Get contacts NOW. I love you but what were you thinking when you bought those glasses???

8. Stop ducking when someone tries to take you picture. Take lots of pictures of everything you do with your friends. Your memory won't always be what it is today and you will love to reminisce over yearbooks and candid shots. For this to be awesome you will NEED to follow #3!!!

9. You will meet the love of your life and not too far in the future. It will seem like its never going to happen. But it does. Times will be rough at times but he's a good guy and he loves you like no other.

10. When you are 37 years old you will have minor dental surgery. DO NOT try to eat a spicy chicken pizza slice the next day!!!!!

Happy 9th Gotcha Day

2011-05-02T08:48:00.000-04:00

As you said this morning, my wise young man "it feels like I've been here forever" and we too feel the same. And yet, it is staggering to realize that 9 years ago we met you for the first time. This journey we are all on together is certainly not easy but it is often joyous. We love the young man you are becoming - we rejoice in who you are and the old soul you have been graced with that seems to help lift and guide you through even the darkest of times. You are amazing. You are our son and we wouldn't have it any other way. I thank God everyday for allowing me to be your mother and for all of the lessons you have taught me.

I am a better person because you are my son.

I love you more than words.

Happy Gotcha Day

Things are Looking Up

2011-04-29T14:13:00.000-04:00

The past few weeks have been difficult and stressful around our house. A great deal of that can be traced back to me - I've had less patience, have been holding on to the stress, I've felt ready to snap at any moment. There were times where I vividly imagined grabbing my passport and heading out the door. I even researched flights to various far away lands.

But alas - I am here. I am digging my way out.

C has been having a hard time of it. I don't believe my mood is completely responsible but I do know it has contributed. This is also historically his hardest time of year, right around Easter. We have never known why (though we have some working hypothesis) but we just know that we should prepare for huge mood swings at this time of year. I had hoped we might escape it now that we have the BiPolar diagnosis and he has been on meds for it for many months. But while the meds have certainly stopped us from hitting rock bottom there is a definite amount of mixed mania and depression hitting him, rapid cycling that is so rapid it leaves me shaking and completely exhausted afterward.

I've also had some very stressful meetings with Corbin's "team" over the past few weeks. His current plan is not working for him or for us and we have been trying to figure out how to change it. Its not easy. There are so many restrictions placed on us from varying Ministry bodies (that I cannot get into on this blog) but lets just say that I find it mind boggling at this point that it is not funding that is holding us back but rather trying to find approved service providers who can work with us and our son to create the life that he needs. I know I am being vague here - and I really wish I could write more. There have been things said and done to me (and our son) the past several months that would make your jaw drop.

But today I took a step - I called and gave notice to our current treatment centre that we will be phasing away from their services as soon as possible. We are meeting with another agency Monday to start brainstorming how to create what our son needs and from this agencies support over the past few weeks we are really optimistic and hopeful for this process. To be truthful I haven't felt those emotions in quite some time and it feels good to know that I do indeed have a range beyond panic, grief, anger, frustration and numb.

The sun is finally shining today, I had a relaxing lunch with my mom and my headache has finally gone away. Things are looking up.

Bite Your Tongue

2011-04-20T08:52:00.000-04:00

When people are pregnant they take birthing classes of some sort and to adopt domestically you take adoption classes. This is all to prepare you as much as possible for your upcoming role. I get it that no class can teach everything there is to know about the upcoming journey in either of these situations. But you get a little more prepared, you find out how to get more information later if you need it, you hide under your covers at home and hyperventilate about what you learned in class and wonder why everyone else seems so freakin calm.

What they need to offer people who have a child with a disability (or special need, or challenge or whatever you politically/philosophically wish to call it) are mediation classes. We need to learn how to become expert negotiators - how to be firm but calm, clear in our expectations but finding a way to make the people sitting across the table from think the whole thing is THEIR idea. We need to be skilled negotiators, special education lawyers, poker players, skilled salespeople. We need to be able to get the other party to "yes", all the while maintaining our dignity and the relationship - without the relationship with the other party(ies) we have very little hope (I'm stubborn, I will never say NO hope)

What no one tells is that even though it is our child we are discussing and everyone goes into meetings knowing that it is natural for us to be emotional and sensitive during these talks, the truth is we have to live up to an almost impossible expectation. Other people will be allowed to deliver their criticisms of us and our child, they will be allowed to give their opinion loud and clear, they will be allowed to get defensive and perhaps even mess up and be offensive. However. Us parents?? Don't even think about it.

Try not to cry - they will take it as a sign of weakness and dismiss you
Do not yell - they will stop listening to anything you say EVER
Do not personally attack - they will be affronted and everyone around them will close ranks and hold it against you
Do not state your opinions too strongly - they will all go on the defensive and that wall will be up faster than you can shut your mouth closed.

Apparently no one has told them not to do this to us, the parents. Apparently it is a free for all and if you complain you run the risk of just getting labelled as a trouble maker.

You hold yourself accountable, follow all the "rules", you remain calm in every instance and put your heart and soul into trying to make a very difficult situation work and still . . . .

They decide that you don't know what you are talking about, they dismiss you as "impossible to make happy" and they stoop to levels that are mindboggling.

But you hold your tongue and you calmly tell them that you are taken aback and deeply offended. You force them to finish having a civilized conversation while the person you brought to the meeting for emotional support writes everything down and yet they still keep saying reprehensible things. You don't just sit back and take it - you respond and ask questions but you do it in an eerily calm way. You leave the meeting shaking but in a way relieved they have showed their hand so clearly. You are thankful that even though they made the tactical error of taking off their gloves and fighting dirty that you had the presence of mind to keep yours on. You battled gallantly (and their blows certainly hurt) and hopefully one day they will look back and feel ashamed of themselves.

You know that you did what was necessary, that stooping to their level would not have helped. It would have done irreparable harm and would have taken years, if ever, to build back up to just the levels you were at before the meeting. Retaliation is not the answer. You did the right thing.

But man it sucks.

It is tiring being the only one in a room that has to hold themselves to such a high standard. Having to share and expose your family to "professional" after "professional" and most not even of your own choosing. It is horrible to know what your child needs but to be at the mercy of others to make it happen. It is horrible to know that you must strategize relentlessly about your child's life. I said a long time ago I don't want to fight.

Why can't we do things just because they are the right thing to do?????

Some Days

2011-04-12T07:46:00.000-04:00

Some days he has these big ideas and strong opinions and I just smile and nod and calmly find ways to distract him

Some days he yells in my face and threatens me and I just take a step back and firmly but calmly tell him what needs to happen

Some days he is dysregulated and I grab him in a bear hug and I tell him we will make it through together.

Then there are the days like yesterday where I totally lose my shit

Days where I can't take being yelled at and defied and delayed from taking his younger brother to an appointment.

Days where I yell and I am not a therapuetic parent and I storm around seriously wondering how on earth did I get here and how much a one way ticket to somewhere far, far away would cost.

But by now I know by now that the bad Some Days pass

and tomorrow has the potential to be a good Some Day.

Good Enough

2011-04-08T09:44:00.000-04:00

Recently I posted on Hopeful Parents about my son's heartbreaking cry for help and understanding. As one commenter asked

I am sure that post was tough to write, but after it was written ---did you feel a bit of relief?

Truth is, even as he sat and sobbed (and I sobbed) I felt relief. I knew that this arrangement we had for him was not working. I was trying to plod along and make it work. I hadn't wanted to let my own feelings and misgivings dictate what is good or not good for him - there were so many positives to his time at this facility originally. I can't say too much about all of the particulars but C breaking down like that made me realize - no matter every one's good intentions this will never work for him. It's not meeting his needs and we are going to kill his spirit if it continues much longer. So I felt relieved that it was now going to be over. We could move on and I could be strong in my resolve that this was the necessary course of action.

We know our son, he does not need punishment and isolation. He does not need to be fixed. He needs structure, loving, kindness. He needs skilled people surrounding him who can help him process as soon as the bad moments have passed. He does not need to be judged. He does not need to be something he is not. He needs people who have gentle hearts and a butt load of compassion and patience.

But it also wasn't as easy as just declaring war on this facility that is charged with his care and treatment. The world my friends is not just black and white, right and wrong for the most part (I proclaim this as much for my own learning as it is for anyone else). Shades of grey abound (much to my chagrin as well as C's). This is an important lesson for both C and I. Sometimes you need to cut and run, sometimes you take a strong stand with a sword in your hand. Sometimes you need to take a strong stand without any weapons all the while exuding love and compassion. I believe my son does the best he can. And as I have said before, I also then believe that (in most instances) others are doing the best they can as well.

It was worth it to try to educate and discuss and problem solve with this agency. And they have tried. The have worked hard. We all have. In the past I have made the mistake of thinking that because something is not working for my son that this means I must declare war on the people "committing" these "crimes" against him. What I know now is it is possible for people to have the best of intentions and still be so completely wrong for my son it makes my head spin.

I cannot change a whole system. I alone cannot change an entrenched systemic belief that punishment will garner good, productive citizens. C cannot be left in that environment any longer. Other kids who have been there have succumbed to the pressures of the unflagging punishment and control. I believe their spirits to have been broken.

That haunts me.

But for C we will begin to move on, we will find a way to build what he needs. Even when it seems impossible we will forge on. Because we have to. Because we have no choice. Because we have to hear his voice and take action. Because he deserves it and he IS GOOD ENOUGH.

To My Son

2011-04-05T08:26:00.000-04:00

I hear you loud and clear

Life has upended on you

Upsetting voices invade your thoughts

Intrusive thoughts race through your brain

taunting, haunting, egging you on

I see that you are struggling

I see the torment in your eyes

I feel your desparation

I hear you

We are listening

We are working

We know you are wonderful and good

We know you need people on your side

people who see past the "behaviour"

We know you are tired

and overwhelmed

and we are trying not to be right along with you

We hear you. We see you

We are here

We aren't going anywhere

We can do this

If He Comes, Will they Build It?

2011-04-04T14:17:00.000-04:00

You know that saying from Field of Dreams . . . "If you build it, HE will come"

I'm wondering does it work the other way?

If our son needs something that doesn't exist in our community - if we are able to do the right things will it get "built" for him simply because he has come and is ready and waiting?

Some people think I am delusional for thinking we can individualize in a system so entrenched with "programs" and outdated cookie cutter approaches.

But, you know, I'm okay with that.

The guy on Field of Dreams was thought to be delusional. And look what he accomplished.

(okay, no one point out to me that Field of Dreams is a work of fiction - we all need inspiration at times no matter the source).

What Haunts Me

2011-04-01T20:02:00.000-04:00

"Mom" he says softly and I am startled by his sudden speech. We had both been sitting quietly, a rare occurrence.

I shift my body slightly to look at the top of his head as he in turn looks to my eyes. Our eyes meet briefly and in that moment he knows he has my attention and he looks away, seemingly looking out the window in front of us

"You know that kid Devin, that small kid that is always angry?" he asks

"Yes" I answer, for I do indeed have a vivid memory of the small spry boy that spewed forth expletives I had never heard before and whose punch to the arm of a staff I could hear from across the room.

"Well, Devin, he doesn't have a family . . . " his voice catches and I feel him begin to take deeper breaths. I can tell he is trying not to cry. I stay very still, knowing that to move or to speak might stop him from continuing to say whatever it is that is causing him such grief.

"And . . . well . . " he continues, struggling through tears to even get the words out "if I didn't have a family - well, I'd be mad too"

All the kids that never make it out of the "system" and have no one advocating for them, they haunt my days and nights. I shared this with a friend yesterday who was once my Manager long ago before we adopted C and she responded "I too worry about all of the children who don’t have people to believe in them and understand them, or even to belong to!"

We all should belong to someone.

Busy & Bumpy Days

2011-03-29T07:35:00.000-04:00

The last few days have been very hectic for me. For a year I wasn't able to work as we travelled back and forth for C and tried to get our lives to what we consider "normal". In that time I actually started to embrace being a full time parent. However, I need something for me outside these 4 walls and we could honestly use some money coming in as having a child hospitalized 2 hours away and a significant cut in income can really cut into savings.

So about a month ago I was fortunate enough to be asked to take on a small part of a project geared to helping our community rethink housing for individuals with disabilities and other needs in our community. It hits home for me and I've immersed myself in all the research and community outreach. Much of that work culminates today in a community forum. We had hoped to get 75 people in attendance. As of last night there were 148 registered and the calls and emails continued to come in.

On the home front C has had some rough days with the treatment centre he attends part time. It's culminated in his ~~refusal~~ inability to attend. I won't go into detail because that's his story to tell should he wish to some day - but I will say yet again that my dream for this world is that people could, in the face of what seems like acting out behaviour or noncompliance, act with compassion and guidance rather than threats and power struggles. Going into a meeting with the centre tomorrow, I'm not at all sure what the future holds - but I do feel peace and conviction in what I know my son does and doesn't need. My son is good enough just the way he is, thank you very much. That will guide me, no matter how bumpy and unpredictable the path.

Over at Hopeful Parents

2011-03-27T20:52:00.000-04:00

Time flies yet again. It's the 27th and I have a post over at Hopeful Parents. I almost didn't post as I am playing catch up from being away and trying to meet some contract work deadline. I hope you will pop over and read my latest post Not Ever Good Enough at Hopeful Parents.

Vulnerability

2011-03-25T08:37:00.000-04:00

A few short weeks ago, a close friend, a mentor - one of my fellow moms whom I have learned from and leaned on heavily over the course of 8 years called and invited me to a retreat. I am a cautious person, I enter novel situations and environment cautiously and with much anxiety. When she said "please come" I did not hesitate. If she thinks I should go I go.

And so grateful and joyous am I that I went.

A. held down the fort, support workers stepped up to the plate and I pulled myself together and headed an hour away (yay - usually everything is at least 2 hours away). It was exhausting, it was invigorating. Our facilitator referred to opening up to new experiences and thinking as "stretching". Oh my I did a lot of stretching. I ate food I had never had (here is a confession - until this past weekend I had never had salmon or risotto, I had and loved both), I spent probably the most time I ever have in the presence of many people who share so many of the same visions and dreams I do, I asked people questions and learned about their lives. I shared openly and I hugged strangers who quickly were no longer strangers. I experienced love and acceptance on a whole new level. I danced to drums with abandon and then played the drums in a drumming circle. I was filled to the brim with hope, possibilities, shared stories, laughter and vulnerability.

We stayed in a striking hotel with amazing suites with a penchant for detail. The beds were luxurious. But we hardly spent any time in our rooms - every moment was packed with togetherness but much of that was spent in silent contemplation. I meditated for the first time ever and found that I really enjoyed it and for the first time in my life one of my horrific migraines resolved without the use of medication.

I met some of my hero's in the world of inclusion - not education inclusion political speak to appease people. REAL inclusion. People who listen, learn and help people live their dreams. To build lives free from the restrictions that have been placed on vulnerable people because of misperceptions and preconceived ideas. The best is that I did not just meet these people - I ate and laughed with them. We shared drink and our stories. We drummed and danced side by side and their energy filled me up.

I know I have so much to say but I need to process it without losing it and letting my everyday life pull it away from me.

One of the things we did at the retreat was watch this video. It is funny and inspiring and powerful. Take some time to watch it, you won't regret it.
Brene Brown: The power of vulnerability | Video on TED.com

I am exhausted and exhilarated all at the same time.

Trust

2011-03-21T19:21:00.000-04:00

I get to the residence to pick him up. He's just had 6 hours of Respite at our local adolescent treatment centre. The residence he "hangs" at has about 6 teenage boys, some who are living there permanently. I'm hopeful that today went better than previous Saturdays. He attends the same program during the week but our attempts at weekend overnight Respite hit some bumps so we dialed back and are working on his building relationships with the weekend staff. It's all about relationships. When he feels safe and understood he is a different child. People need to experience him repeatedly to really understand him. People have to prove to him that they can be trusted.

When I pull open the door he greets me right away. Not with "hi mom" but rather with "I got a sliver, I need tweezers!" at the top of his lungs. He is moving back and forth, room to room while trying to explain to me what is wrong. I begin to piece it together - he has moved quickly down the stairs, sliding his hand on the banister and getting a sliver in his thumb. I take a quick look - while his whole body bounces and jiggles. I can't see a sliver but I can see a slight abrasion. I assure him we can take care of it at home. He begins telling me the story again, his voice rising. At that moment he sees the staff come around the corner - the man he has built a good relationship with over the past several months. One of the key people who supported him during his transition to this particular program.

"Hey, I need tweezers!" C demands of the staff. I can see he is beginning to spin out of control. I am hoping we can head this off and get him to the van quickly. Before I can respond the staff says, in a matter of fact voice "I told you three times already when you asked - we don't have any. Besides I can't see anything to pull out of your thumb!"

"You're first aid kit will have some. You have to have a first aid kit. Everyone needs to have one" barks C.

The staff shrugs, "sorry bud - don't have any" and walks away to help one of the other boys with something.

This is the part of the story that I SHOULD have done things differently. If I could this is what I would have done: I would have said to C, in front of the staff "Wow, C, that must have hurt when you did that. I bet what you need from Joe (not staffs real name) is for him to know that your hurt and you need his help" and then I would have turned to Joe and said "I know I got here just now, I'm assuming you were just about to help C with his thumb because he was letting you know by asking for tweezers that he needs your sympathy and help".

But what I said was "ok C, lets go and we will take care of it at home". And we did, or at least we tried. It was clear once we got home that he had tried to get it out on his own and while I couldn't actually see a sliver he did have a faint line running down his thumb. 2 days later his thumb, despite my first aid attempts, was severely infected. And my son was refusing to return to the centre.

The amazing part was that he was actually able to say "I'm not going there because they didn't help me with my thumb so I can't trust them".

Amazing again was the Managers response when I called to share with her "Oh, we are sooo sorry that happened to him and that we didn't respond better. He needed our help and we let him down. I will talk to the staff". In her follow up call she said to me "I'm assuming this incident really set off some attachment issues for him. I'm hoping we can meet soon to talk more about how we can support him."

It's all a work in progress, for all of us. We all are trying to get better at letting others know our needs and building trust, not just C. But we are all making progress and I couldn't ask for much more than that.

When You Wish Looks Could Kill (or at least do serious harm)

2011-03-19T11:27:00.000-04:00

I was reading Kari's post this morning and it made me remember an incident years ago with C. I thought I had blogged it because I remembered typing it out. Turns out it was years before I started blogging but I thought I would post it today. This was back when the only official diagnosis we had was ADHD and we were about to get the Tourette's diagnosis.

September 24, 2004

I am a mother now. After much soul searching, treatments, agony, despair and hope I became a mother. And as my son learns and grows, so do I. Nothing could have prepared me for motherhood, nothing could have prepared me for this wonderful energy force to take me on the most amazing ride of my life. It’s exhilarating, it’s exhausting, and it’s beyond mere words.

Yesterday a boy at C’s school called him crazy. Worse than just hearing about it I witnessed it. As C comes around the corner to join the boys at the monkey bars, the brother of one of his classmate’s yells, “watch out guys, here comes the crazy kid”. Of course he didn’t notice me about 30 feet away but his buddy next to him did. As I approached I yelled “Hey, why would you say that to him?” In a way I have to give this kid credit (or is it lack of upbringing?) as he stood his ground and looked at me and said, “then why does he do those things?”.

How I wish I had the perfect pat answer all ready for this kid. I waited a moment (giving the kid the evil eye) and said, “because he can’t help it, his brain and his body don’t always work together. But that doesn’t make him crazy; it just means he sometimes needs extra help. Why don’t you try to help him out instead of picking on him?” In some after school special that kid would have apologized and become my son’s staunchest supporter. Instead, he shrugged and walked away. I bumped into his mother a few moments later and shared the story, and she did much the same. I guess I know now where her kid gets it.

Competence and Camaraderie

2011-03-16T09:33:00.000-04:00

I am going back and trying to finish up posts I started several months ago and hit "publish" on as many of them as I can. I'm trying to change my ways of never finishing things. This post was originally started in October 2010.

Last year with C's difficulties he gradually removed himself from all activities including his beloved Cub Scouts. We had held him back an extra year at Cubs when other boys his age moved up to Scouts because for several reasons - mainly because Scouts comes with huge independence and increased expectations. They begin to treat the Scouts as young men rather than boys and C was just not ready. We wanted him to experience increasing success - such as camping overnight which he had not yet done. Unfortunately the year passed and despite our attempts, C was never quite stable enough to return.

This year he has a new worker, who happened to move to our town this year and she has worked at his Therapeutic Summer camp for the past 3 summer's. I know - it was an unbelievable fortune, one that we have grabbed onto with all possible enthusiasm. She loves the outdoors and was enthusiastic about accompanying him to the weekly meetings and extra outings where possible. So far this year they have enjoyed a trip to the police station, a farm and to a wood shop to cut out their Scout Trucks for racing. There have been other organized trips that C has decided ahead of time that he would prefer not to attend (like a hike in the freezing rain and mud that was a "go" no matter how long or hard it rained because Scouts need to "be prepared") and at this point we support him when he decides to forgo an outing.

He's earned a few badges so far and looks forward to his time with the pack. I just cannot say enough about the dedication and investment of the leaders. I went on one daytime outing (everyone else was camping - we joined them for the day), and I was taken aback by the spirited personalities of almost every boy in the group. The leaders are working with kids with limited social skills, limited interests, difficulty in executive functioning and so on. They are doing it without any extra assistance or information. They have taken these boys under their wings and I was humbled by what I witnessed and experienced the day I spent with them.

I know my son has grown so much from being in Scouting. Every adventure adds to his feeling of competence and camaraderie and that is what every boy should experience.

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To Tell or Not to Tell, That is the Question

2011-03-15T11:27:00.001-04:00

Over the years I have given a lot of my time and brain power (as diminished as it might be on many occasions) to this question:

When faced with a situation in the community where my child has been struggling or done something to bring attention to himself - do I TELL that person or persons about his complex needs?

Which then inevitably lead to more questions:

If yes, then how much or how little do I say?

Do I give the correct DSM label? or just give layman's terms and references?

Am I violating my child's right to privacy by telling?

Will the person honour what I have told them or use it in some way against my child and/or me?

WHY should I even care what other people think about my child?

Am I wanting to tell them to alleviate my own feelings about this event (embarrassment, anger, frustration) or am I truly doing it to assist my child in some way?

Even if I am doing it because the person has pissed me off and I want to wipe that know it all smirk off their face then isn't that ok sometimes? Aren't I entitled to be less than perfect?

And on and on and on.

You get the picture.

There have been many times I have shared with individuals and groups (some more successful than others) and times where I have chosen to remain somewhat silent. In the end there is no clear cut rule or answer, at least not for my family. There are times where explaining to other people will undoubtedly help my son and/or our family. There are times where it is clear that all the explanations in the world will not change the other persons or groups assumptions about my son.

The biggest thing that I have mulled over the years is this: In so many ways we should not have to divulge private information about our son or our family just to gain understanding, compassion and acceptance from the community. In an ideal world people would not be quick to judge and condemn. People wouldn't assume that a child "acting out" is the same as a child "being bad" or that the parents are doing a bad job. In an ideal world we would all be happy to accept and acknowledge that everyone is doing the best they can do. That people would be willing to cut fellow parents some slack and to not condemn each other.

The world is not ideal.

However, I must say that, in almost EVERY instance where we have chosen to share some of our son's story we have made a difference. A difference to him, to our family, to the individual or group that we shared with and many times we have either witnessed or been told about how this new understanding of our son and one or more of his disorders has now lead to increased understanding/awareness in our community beyond our son. It is like its own "pay it forward" scenario.

I often tell service providers involved with our son that I hold near and dear to my heart the philosophy that compassion is key and knowledge is power. Building awareness leads to increased understanding and, in some instances, to change for the better for more than just my son. It sometimes means making us somewhat vulnerable and it means choosing to believe that there is inherent good in humankind. I am always asking people involved with my son to extend to him the courtesy of understanding that he is doing the best he can. What kind of hypocrite would I be if I didn't follow that same practice?

I choose to believe that people are doing the best that they can and if I take the time to share and explain that they will then use that information, even in the smallest of ways, to do even better the next time.

Squeezy Hugs

2011-03-13T22:46:00.001-04:00

He climbs up the snow bank and down, crashing into me. He steadies himself and then glances, ever so briefly at me, before he throws himself into the snow. He's forgotten how big he is, how much he has grown. His body is moving faster than his brain and he finds himself crashing half into the snow bank and half onto the hard cement. I hear the loud thud as he lands, his chest bouncing off the pavement. I wince, he barely registers the pain on his face before he is up again. When he was younger I would have found a way to intervene - to put myself in his physical space. To give him a big bear hug (a "squeezy hug" he calls them). But he's much bigger now, it won't be long before he is taller than I am. He's too frantic right now for me to move closer. If I try to get in his space right now, too soon, he will panic and bolt.

I concentrate on remembering to breath and I constantly self talk in my brain "He is fine, you are fine, this too shall pass". I momentarily let myself feel frustration. Not with him but with the fact that had I been with him even twenty minutes earlier I would have seen the signs that his Engine was running high and his brakes were leakier than ever. I would have moved him to an uncrowded, quiet area. Given him a cold drink, encouraged him to do some heavy work (like wall push ups or carrying a stack of books) and averted this complete dysregulation (though I admit I'm not 100% effective). But I wasn't with him. I couldn't do that. So I push those thoughts away. I need to be fully present in this moment with him. I need to be alert but calm. Ready to step in as soon as I see a chance to help him regulate.

He starts to dart one way then seems to change his mind but his body hasn't fully received the message - his legs go in one direction while his upper torso tries to head in another. This results in him falling again, this time all of him hits the pavement hard. This time the pain seems to register but he still jumps up right away, gasping for breath, his face mottled red and white from the exertion.

"I think that one hurt" he yells as he holds his side. He's not yelling at me, he's become so dysregulated he cannot control the volume of his voice.

But now I see my chance to step in, to assist in some way. I swiftly but calmly move closer as I say "Ouch, that must have hurt. Let me see". I look at his side, a definite redness is developing, I rub the spot gently and then pull him in for a hug. I know i am taking a chance, he might be too hot and too "touchy" for me to try to hug. The tightness in my chest lessens for a moment as he relaxes slightly in my arms and says "Big Squeezy Mom" as though he is 4 instead of 12. I position myself, my arms wrapped around his upper torso - I try not to think how hard it is getting to give him the squeezy hugs he needs as he keeps getting bigger and bigger. I entwine my hands and squeeze my arms around him, picking him up off the ground slightly. I'm just about to ask him if he wants more when something catches his eye.

Before we can finish this, this much needed regulating, he has broken free of my arms and is running toward our neighbour. His whole body seems disjointed - his arms flailing and he almost trips over his own feet.

"HEY!!!" my son yells to our unsuspecting neighbour. The man startles, almost drops the shovel he holds in his hands. Then he sees its my son and his face relaxes. Almost as quickly an alarmed look returns to his face as my son barrels toward him with no indication that he is going to stop before crashing into him.

I start to panic, wondering if my son really will inadvertently knock over our elderly neighbour. I know I am too far away to physically stop him and yelling "stop" or "no" might dysregulate him further. Instead I yell (as calmly as I can) "C, freeze!". Thankfully this old technique that we have not had to use for many years seems to flip the switch in C's brain and he does indeed come to a full stop, about 6 inches from our neighbours face. Before I have time to reach them or the neighbour has time to recover, C has moved on to the next thing.

"I seeeeeeeeeeee youuuuuuuuuuuuu arrrrrrrrrrrrrrrre shovelling" he struggles to get out, his vocal tic makes him elongate almost every word and in an effort to get the words out he moves his voice up several octaves. The sound, quite honestly, sounds like nails running along a blackboard. Bless this neighbour of ours. He looks at C and flashes a smile and answers "Sure am".

My son begins to insist that he help him, that our neighbour let him do the last bit. I'm honestly taken aback by C's offer, it is a very polite and neighbourly thing to do. But the neighbour quickly brushes off his offer as he only has a few more shovels to go and he is done. C, however, is not going to take no for an answer and I can see him digging his heels in. The continue their banter of offer and refusal back and forth. C's voice is becoming more and more insistent, pressured and loud. He is unrelenting. I grasp at ideas to interject meant to spur C on to coming home with me. He's having none of it. I see my efforts are only spurring on his intense feelings. He's now physically trying to grab hold of the shovel. The neighbour is backing up, not giving in and yet beginning to falter as this seemingly polite boy is coming close to crossing the line to rudeness.

I start to feel panic welling in me. My head is pounding - the small headache I had before heading to pick my son up from his short day at school has now blossomed into eye watering pain searing between my temples, making my eyes blurry. I am worried for a moment that I might actually get sick, right there standing on the sidewalk in front of our neighbour (who we rarely have ever seen in our 10 years living here so we are virtual strangers). I am searching my brain, trying desperately to come up with something that will motivate C to abandon his quest to be "a good neighbour" as he keeps repeating to an increasingly distraught man.

Out of the corner of my eye I see snow, large icy chunks strewn across the sidewalk in front of our house. I immediately want to scream. Once again the new snowplow company has succeeded in plowing our already plowed road and covering the newly cleared sidewalk. I want to scream. I so don't need this right now. I want to sit down on the sidewalk and sob - for the pain in my head, for the pain in my heart, for the frustration and the panic, for the feeling that we just seem to keep doing the same dance over and over.

But I don't do those things

Instead I take deep breaths and I proclaim "C - look at all Dad's hard work! Look at what the snow plow did"

It works. He looks at the direction I am pointing and he abruptly ends the discussion with the neighbour and starts stomping off down the road. I flash what I hope is a sincere smile at the neighbour and wish him a good day.

We get to our house. I look at my watch. It has taken us 20 minutes to get home from school. The school is 3 houses away. I just want to go in the house and crawl under the blankets. But instead I instruct C to grab a shovel. We need to get the ice, snow and slush off the sidewalk at our house and our neighbours before it freezes up and becomes impassible for our elderly neighbours and the kids walking to school. I'm also hopeful that the heavy work will help him regulate.

Of course our garage door is broken so I have to dig out my keys, head around the side and get another shovel for myself. By the time I get back C has thrown a ton of snow on the formerly clear road. Snow that the new plow driver will just speed along and throw back across the sidewalk.

I don't think this time. I just react. I start to yell. C's face falls - I hadn't realized how proud he was of his hard work. I feel instantly guilty but before I can apologize he begins to bang his head off the tree. Hard. He knows I am tense and upset. I have just yelled at him. He assumes it is all his fault. I move towards him and put my arm around his shoulder. I pull him close and I say "I'm sorry" and he accepts my apology.

He goes back to shovelling and the fixation and line of questioning from the past few days resurfaces.

"Mom, I need to go to the Dollar Store" "I need you to take me" "If you don't take me I'm just going to go on the bus" there are no pauses for me to answer. He makes no eye contact. His speech is pressured and brief. Finally he yells "MOM, I NEED to go". He is visibly shaking now and he's right beside me. I look up and, even as part of my brain yells "NOOOOOOOOOO" I answer him.

I say "We are not going today"

And he throws his shovel. He swears and approaches me, pursing his lips and preparing to spit. At the last second he turns and runs into the garage door instead. He slams his body hard and he yells "I NEED to GO!!!!"

I know this is the OCD. I know he's been fixated on the Dollar Store and a certain toy for a few days. I know he truly believes that if he does not go he will not be able to live - that the anxiety and unrest will continue to haunt him. The unrelenting thoughts haunt his every moment. He cannot find joy in his life when he feels so out of control. He talks all day about it, he even talks in his sleep. His anxiety is high and his tolerance low. I know he believes if he goes and gets this toy he will feel better. I know this is not true. I know because we fell for it the first day. And for a short while he felt better. But we are wiser now. We know.

I know this is not his choice. He needs me right now. I just need to get in the house. I need my migraine medication. I need some space and a good cry. But he needs me. He needs me to be calm but I can't be calm right now. I feel desperate and hopeless. I feel angry and frustrated. Through gritted teeth I say "Get in the house!", well really it is more of a growl as I stomp my foot and point to the house. He freezes, there is fear in his eyes that I don't notice at first. I'm too busy trying not to let these strong emotions of despair and anger and frustration completely overwhelm me. I make a move toward him and he jumps forward and runs into the house. I start to cry - relief that he is now in the house, shame that I have acted this way.

When I get in the front door he stands a few feet away, biting his fingers and swaying slightly side to side. He looks at my face and seems to take in the fact that I am crying. He starts to talk, pauses, smacks himself in the head once and then says "I'm sorry. I'm sorry but Iiiiiiiiiiiiii neeeeeeeeeeeeed to gooo to the ssssssssssssttttttttttttooooooorrrrrre". I feel like someone has punched me. I am crying and he is still asking to go to the store. But before I yell back I catch his eyes. The pain and fear and anguish and guilt - all of it is there in his face. I've stopped crying but now I am partly hunched over - my eyes closed, taking deep breaths. Suddenly I feel calmer and I look up at him and I say

"No. I'm sorry. I'm sorry that school is so hard. That the world is so noisy for you. That your brain tells you one thing and your body another. I'm sorry that OCD is trying to trick you and all of us. I'm mad at the OCD but I forgot and I got mad at you. I'm sorry I blamed you. I'm not mad at you."

He begins to cry, his shoulders releasing some of the tension and he just nods at me.

I sit down on the bench by the door.

He says quietly "Do you need a hug?"

I nod and stand up and he comes and squeezes me tight. I kiss his head as we hug and say "Remember - It's not you I'm mad at. It's the OCD". I feel him nodding his head and he pulls away slightly and says

"and the damn snow plow guy"

Yes. Yes. And the damn snow plow guy.

Still Here

2011-03-11T07:29:00.000-05:00

I'm still here - just trying to juggle some contract work for an upcoming event, the boys and my household. I'm also trying to juggle it without letting myself get too stressed about it. Two migraines in the last 3 days would tell me that I'm probably not "rolling" with it quite as much as I'd like to think I am.

In the meantime - I wanted to link to this amazing post that Kari has done at Coffee Catharsis about Responding to the Need Not the Behaviour. I am always preaching this but she has summarized it and given an example in a way that I've not yet accomplished.

Small Update & The Best Secret Ever

2011-03-02T08:53:00.000-05:00

C has been working so hard - at school, home, Scouts and the treatment centre he attends most afternoons. He's actually finishing projects he has started (with lots of support) and he has a Science Fair Project due this Friday (I'll post more on that soon). A few weeks ago we increased his time at school and he's now up to 2 hours. He's doing really well while he's there but we do experience the fallout at home afterward.

Every Spring for the past 8 years C has grown very despondent and his OCD symptoms have come on full force. This year he's on different meds and has an amazing amount of support so while we are seeing an increase in the OCD, its not nearly as debilitating and the depression has been kept at bay (knock on wood). He's doing well but it does come at a cost to all of us - including him.

So we are trying to be proactive this year and had anticipated the Spring is hard and we planned for him to attend a Respite weekend where he attends Summer Camp. For C, Camp Winston is like Christmas and we know he will love his time there. We are hoping it is just the boost he needs. He doesn't know yet that he's going - this is the hardest secret to keep!! But we need to get through the week and his Science Fair project is due this Friday - he's worked SO hard on this and we don't want him distracted from it.

When will he know he's going? Well, on Friday I will pick the boys up really early from school and tell them we are going to visit their Great Grandma (which we will as it will make a great timing for a movement break and we haven't seen her in forever). Then we will get back in the van and halfway there (camp is about a 6 hour drive from where we live) A will call C from work. I just hope C's excitement can be contained for the remainder of the trip.

Confession

2011-02-18T08:52:00.000-05:00

In 2000 my darling husband and I started seriously thinking and working toward adoption to start our family. At the time I worked in an Assessment/Day Treatment program for preschoolers with social/emotional/behavioural issues. I would go into work and sit in clinical meetings and while the people I worked with were amazing and dedicated and knowledgeable and deeply dedicated to helping children and their families - they also seemed resigned to the idea that our very young kids were often destined to a lifetime of misery no matter what we did for them in early intervention. Many of our kids were in foster care (or on the brink of going into care) and my colleagues often proclaimed they were damaged and "unadoptable". I couldn't reconcile this. To dedicate your life to these children, to witness the delight my colleagues took in the escapades of our young charges only to turn around and declare such doom and gloom for the future of the very young.

When my Manager heard that we were taking the adoption classes in 2001 she congratulated me and wished me well but seemed guarded. When I told her we were looking to adopt a slightly older child (3 to 5 was our preferred age range but we would have looked at older) she tried gently to talk me out of it but stopped short of being offensive.

She did however give me a copy of "Adopting the Hurt Child" by Keck and Kupecky

The current title includes the words Hope for Families with Special-Needs Kids but I don't remember those words being there originally, if it had I think I would have been thankful rather than put off by the gesture. Because to me I was surrounded by people that seemed to think I had lost my mind. I have said it before and I will say it again

We did not go into adoption thinking it would be easy, not by a long shot

But these people, my co-workers, they had seen a lot of really hard and serious stuff in their many years experience. I was young and eager and not as experienced. I wouldn't say I was naive but I think my co-workers just wanted to protect me from the very hard road they knew we would be travelling.

So the title of my post is "Confession" and this is where I divulge it:

I adopted a child at the age of 3.5 who we now understand had severe attachment issues but we forged it ALONE without therapy or guidance on what to do. I purposely avoided reading books and blogs and websites about attachment even though I KNEW good/secure attachment is the foundation for everything else in life.

Let me explain

During the Adoption disclosure process C had a Psychological Evaluation. At the feedback I specifically asked about his attachment and we were told that it was obvious he had been fortunate to form some attachments in his young life. After that - I tucked away the attachment piece and rarely looked at it.

I mean - I knew at a deep level the attachment issues would colour his world. How could they not? He had multiple disruptions and had experienced significant neglect (the extent of which we would not understand until much later).

But no one in our community mental health systems seemed to know anything about it - the one social worker actually said to me, even though I informed her SEVERAL times that he was three and a half when we first met him and had serious and significant disturbances in his attachment - she said "oh but surely he doesn't remember any of that"

that was in 2004 and I kid you not people

I knew she was wrong and ill informed but I got tired of trying to find someone who would understand and help us.

Over the years the topic of his attachment has been brought up and waved around but never really addressed. We forged ahead on our own. We focused on his Tourette's, his ADHD, his learning issues, his anxiety and his OCD, his Asperger's and his BiPolar but no where along the way did we really look at his attachment.

I wanted to but I only wanted to with experienced and knowledgeable people.

I had read many books and websites and blogs that scared the crap out of me. People being told to hurt, shame and/or punish their children for things that I knew in my core were not the child's fault. Tactics that were not well researched or proven were being touted as "cures".

And overall people were not optimistic about our traumatized children. All I knew was that I could not, would not purposely contribute to further traumatizing of my child.

I had not heard of therapeutic parenting

I eventually found Collaborative Problem Solving and

I went to some adoption conferences and training

We did the best we could at home

and boy was it hard

But that's my confession

And if I could give just ONE piece of advice (which I don't tend to give and only if asked) to adoptive parents who are just starting out it would be to find someone who is trained and extremely knowledgeable about attachment and adoption issues. Make sure that therapist is a good fit for your family because there are times where you will rely heavily on them.

I look at C, especially the past few weeks, particularly after I finished the Circle of Security attachment group and I am amazed at his progress. I am amazed by mine. I am also amazed by my husband's progress - he was unable to travel to CPRI with me to take the group but he has listened as I do my best to describe things. He's putting them to work and he's even reminding me at times when I forget.

I try not to feel too sad that we didn't have this earlier. I try not to feel bitter that for so long I was just flying by the seat of my pants. And now that its not all as scary and horrible as it used to seem I am reading about attachment (books and blogs) and I'm reaching out to others.

It's nice to not feel alone anymore.

Reminder to Myself

2011-02-16T08:45:00.001-05:00

Things for C are going well (and yes, I know I just tempted fate by blogging that but oh well). He has his ups and downs and every day is a challenge - and yet, he's managing everything and compared to how things have been in the past things are good.For me I gauge that he's having good days partially by if I think he is happy and partially by if I am receiving phone calls from school and the treatment centre about concerns or not. I have not been getting any calls lately and overall C seems happy.

What does that mean for me though? Does this mean that because I can tell people he is doing well that the same goes for me - that we are so entwined that his "good" day dictates that I have a good day? Cause let me tell you - his "good days" that I am SOOOO thankful for come at a HUGE cost to me. The patience and calm that must absolutely ooze out of every pour of my body in order to help him stay regulated. The work calls and tasks (yes I'm trying to do some contract work that allows me to mostly work from home) that I have to just drop, sometimes literally mid-call, to tend to his increasingly overwhelmed system.

We increased C's time at his community school this week. I had held everyone off, including C, as long as I could. I knew in my gut he was as ready as he was going to be - and yet, I've been down this road before. Even good and happy and successful experiences can wreak havoc on C. I knew that the more time he spends at school, the more he will use up all of his reserves trying to act right and control himself. Then he will come home and be dysregulated. Funny though - even though you KNOW it's going to happen there is no way to prepare fully.

So I'm doing my best to keep calm and to stay focused on what is important. It's important to be there for my son and to help him to regulate. And I do see that it is taking less from me to help him do that. I am mindful that he has made huge progress.

What I don't need are so called "professionals" who know absolutely nothing about attachment or therapeutic parenting or really anything about how to "handle" kids with anything other than threats and punishment - I don't need those people making insinuations and assumptions about my parenting. Even more so I need to remind myself that I don't care what they think - I know I am doing right by my son. I will pray that one day they will understand what we are trying to do. I will pray that they will reign in their harmful practices. I will pray that when they do one day realize how different their approach could have been that they will be able to forgive themselves because just as sure as I am that they are doing incredible harm I also know that their hearts are in the right place and they really believe they are doing good.

My "friend"

2011-02-12T11:08:00.003-05:00

I was reading Marty's Musings over at Waldenbunch and she had posted about her "friend" financial worry that holds her back.

My friend is free floating anxiety. I've lived with it my whole life. Waking up in the morning and being hit by this horrible, gut wrenching feeling of dread and despair.

But when I take a moment to take stock of my life I quickly realize - everything is ok. I'm ok. There really isn't anything looming (usually). The interesting thing is that when there IS something to be stressed and worried about - that is when I feel really calm and just move into action mode.

So far this morning I have yelled and screamed at every member of my family. Apparently I seem to be really mad about something or at someone. But when I took a moment to reflect I realized - I'm just back to feeling anxious and worried. Much like our kids who have experienced trauma - something has triggered in me and I'm lashing out and driving people away.

But now that I have recognized and labelled my own miscuing - maybe I can sort this out sooner rather than later. Or at least one can dream. I too have a feeling that, as Marty wrote -

This "friend" and I will probably do battle for a lifetime.

What is your "friend"?

How I Stopped from Drowning

2011-02-07T16:50:00.005-05:00

In response to my last post at Hopeful Parents, Get in the Pool, Louise of BLOOM left the following comment:

WOW!!! What a powerful post! I love this analogy of drowning and it is perfect and meaningful!!! When you say you went through your own "drowning," when your body was failing you, how did you rescue yourself?

I told her that was a very good question, one that I have been thinking about a lot lately. I promised her I would post a follow up on my blog to answer her question. I have never written in detail about what happened in our family in 2010 but you can get a sense of my emotional state here and here. But more specifically here is an answer to Louise's question about how did I rescue myself from drowning :

First, it's important to know that at the time this was all happening (my son in treatment 2 hours from our home, becoming a one income family, our youngest asking to schedule meetings with us in order to spend time with us) I was not aware I was drowning. I was doing everything I could to just get my son somewhere safe. Once he was safe people kept telling me that now things would get better - but they didn't get better for me, not for a long time. I had been waging my own private war for years and now my mind and body could not stand any longer. I sank under the water. For a while I just succumbed to the drowning and then things started to change over time - what follows here is my attempt at organizing and summarizing those changes.

Overfunctioning:
I stopped overfunctioning more by necessity than by choice in the beginning - I looked like crap, I felt like crap. I didn't try to put on a fake smile and get through the day.I stopped feeling responsible for everyone's happiness around me - cause I could barely put my socks on or complete a sentence. I let down my guard and when people offered to help - like to make us a meal or take my younger son for a few hours, I just let them because I was too tired to try to fight it. I was too exhausted to worry about what people would think of me. I stopped cracking jokes to hide my pain and instead wrote emails and had face to face conversations with people where I cried like a baby and I told them my biggest fears. I let people hug me and offer me comfort. I stopped working and it felt like the world was ending.

While there were many things I loved about my job, it was a huge burden to me at the time. One more very big thing that needed my full attention and commitment. Attention and commitment that I just couldn't give. Freeing myself of that obligation was a huge weight off my shoulders.

I stopped offering to assist with community events etc for our local parent network. I couldn't make commitments to anyone for a period of time. I temporarily resigned from all committees and task forces (except one that only meets 4 times a year). I told myself I wouldn't volunteer anywhere for anything for 6 months (in my head I doubted I could make it to 3 months). A year later and I am just now starting to volunteer again.

Several times a day I begin to slip into old patterns - opening my mouth to say "yes" impulsively but now I'm finding it is taking less and less effort to slow down and sometimes say "no" or to delegate things to C's school, treatment team or in home workers. It's taking a lot of practice and while it feels foreign to me most of the time, in the end it also feels very right. I'm hoping that one day my default setting will be one of self preservation first and foremost rather than one of constant sacrifice.

Asking for Help and ACCEPTING Help
I began to understand that no one could hope to parent our son alone. I needed to ask and then let people help me more, to help him, to help our family. I needed to step back and allow others to have more of a role with our son - and people really began to step up to the plate. My Sister in law began visiting him whenever she was in the city he was in. She would bring him special treats and play with him in a way that others at the centre were envious. Other extended family members wrote him letters and called him. I could relax about not always being with him because others were helping to fill in the blanks that the distance was creating. He began to see that other people loved him unconditionally as well, not just his mother.

As I wrote about here, I also needed to get clear about what our family realistically needed from government services and the community professionals in order to be able to plan for our son's return and to be preventative. We needed to do everything in our power to try not to head down this path again. My husband and I spoke at length and he came to more meetings with me during this time. I knew I could trust those at CPRI so I leaned heavily on them during my son's time in residence there and I did not allow myself to feel guilty about it for more than a minute.

I sent out an email to all my close friends and co-workers explaining a little as to what was happening in our family. I was clear, no sugar coating it, that our son and family was in crisis. That we were feeling isolated and overwhelmed. I asked people to not only keep us in their thoughts and prayers but also to please stay in touch - as living with a child with severe and complex mental health needs can be so isolating.

In response my co-workers started up a meal chain for us - It was a huge weight off my shoulders when someone brought a meal twice a week and I could relax and know that if nothing else happened that day at least my family ate a good healthy meal. It also made my friends feel useful, they felt like finally there was something they could do to help our family after watching us struggle for so long. They had all stopped offering to help years ago because I thought it was all my burden to carry and it felt weak and wrong to accept things from people in that way. But when I was travelling 4 hours several times a week to see our son it no longer felt weak or wrong to accept - it felt right and we were (are) so thankful for that. I see now that it was my pride standing in the way.

Connecting with People
Beyond accepting help - I knew I needed to end the isolation that had crept up on me and my entire family. When you have a child with unpredictable rages and out of control anxiety and severe loss of reality there is no safe place in the world but home is your best bet. So I made a concerted effort to find ways to share with trusted people about the trials and tribulations in our day to day life that would make me feel less alone but would not be speaking ill of my struggling child. I needed to let my guard down and allow myself to be vulnerable to people who could be trusted. I needed to know that although it felt like if I allowed myself to cry that I would never stop, that it wasn't true. I could feel and face the emotions without being destroyed by them.I discovered that it felt really good to be hugged when I was in pain.

Taking Care of Myself
I admit it - I would always cringe and maybe kind of go "ya ya whatever" in a dismissive way whenever people, books, media would talk about how important it is for parents of children with complex needs to "take care of themselves". I always brushed it off and was more than slightly annoyed. Sure, take care of myself when I can barely get through each day. Sure, let me get right on that.

The truth however, long before I became a mother I had decided that I wasn't worth spending time, attention, money on. I did the very basic as far as hair and clothes and rarely went out or spent time with friends. The why of this could be a whole other ~~book~~ post. All I know is that having the children I have just severely decreased the likelihood that I would take any time for myself. Hitting the bottom of that pool and almost drowning changed that. Being a martyr wasn't working for anyone. It was time to create "me" time and to not only NOT feel one ounce of guilt about it but to also defend that "me time" and activities within an inch of my life. My soul, my very existence requires me to protect the time to do activities that I enjoy - that fill up my lungs with air so that I can swim to the edge of the pool and hoist myself out.

I needed to find ways to take care of myself - to unplug from the world and find inner peace and joy. I needed to reach out to friends and acquaintances and go for coffee and get a massage (*note: I have some serious sensory issues and it was a HUGE leap for me to give and receive hugs, to move on to getting a massage was monumental). I needed to put down all the books about disorders and government and lack of funding. I needed to focus on reading silly, lighthearted books and taking bubble baths. I needed to get my hair done and drink way too many coffee's. I needed to do things that felt good, that felt freeing, that I had long ago abandoned and forgotten.

I also spent money I didn't have to go back to therapy. I needed to be able to talk to someone, to process with someone all that had and was going on in my life. I needed a safe place to fall apart and to explore and to sort through. It was a hard decision in that it was not cheap and I always felt like I should be able to do it without therapy. But that argument with myself was short lived. I was fighting for my life and I believe in therapy and so I went and I worked hard.

Hope
I needed to fiercely believe that my son would be ok and I needed to believe that even if he wasn't that we would survive it. I needed to purge our lives of the negative, naysayers who did not support our son and/or did not share his vision for how he wanted his life to be. I will write more about this later.

So there is my first attempt to summarize how I stopped drowning. Really it was a combination of learning how to swim better and grabbing hold of the lifeline's that people threw to me. I'm curious to know - have other parents felt like they were drowning at times? If so - what did you do? what helped you? Post a comment or link to your blog. I'm far from done this part of my life - I feel like I'm hanging on to the edge of the pool catching my breath - fully aware I could start to sink any moment if I don't keep moving.

In the Meantime

2011-02-04T18:40:00.000-05:00

I'm working on a few posts but I need to be able to focus for a period of time and since C is in a dysregulated state that is not likely to happen soon. So, in the meantime, I did come across this broadcast about Juvenile BiPolar Disorder on the Coffee Klatch on blogtalkradio with Alissa Bronsteen Director of the Juvenile Bipolar Research Foundation and and Demitri Papolos author of The Bipolar Child . I found it really interesting (what I've been able to listen to so far) and several times found myself wondering if someone had shared our son's file with them.

I thought perhaps other's might be interested so here it is.

Alissa Bronsteen Dr Demitri Papolos - Child Bipolar 11/21/2010 - The Coffee Klatch | Internet Radio | Blog Talk Radio

Winter Fun

2011-01-31T19:00:00.001-05:00

I'm very achy and sore today but thankfully I am not sick. Nope, it's the fall out of my most recent outing with my 7 year old.

I realized last week that while I used to always go tobogganing (or sledding I think you call it in the U.S.) with C as a way to get him all the physical activity he needed and to try to preserve some of my sanity - I rarely ever take J. There are always dishes to do, laundry to be folded and to be honest I am feeling older and out of shape and just downright lazy.

But I made a promise to myself that I would take him considering that following the horror that was 2010 I have this new resolve to seize the day and enjoy moments with the kids. To really be in the moment with them, not just as a casual observer or taking pictures on the sidelines to ~~never~~ one day scrapbook in an attempt to try to prove how happy and involved I was in their childhood. (the pictures here are actually from last year - we were too extreme yesterday for me to risk bringing the camera. :-)

So yesterday C was away with his Dad so J and I headed out to the hill. I made sure I was warm so I wouldn't wimp out and we took two toboggan's with us. We got there and there were about 5 other families already enjoying the snow. I felt a little self conscious at first but it didn't take long before J and I were racing each other down the hill. And I don't mean that I sat on the toboggan and pushed off gently. Nope we started from standing and ran and launched ourselves down the hill.

When I posted something on my Facebook page a friend said she was nominating me for mother of the year. I pointed out that I would hardly fit that bill since on one occasion I actually reached over and caused my son to do a somersault in the air off his board and he landed face first in the snow. The I laughed at him (well I made sure he was okay first and he was laughing before I was). At one point he jumped off his board and onto my back. We were shrieking hysterical messes and while I didn't last long the quality seemed to hit the spot for J.

Of course today my rib cage hurts and my whole body aches but soooooo totally worth it!

What Makes it All Worth It

2011-01-29T11:43:00.000-05:00

Empathy was such a hard thing for C to express. I always knew he felt deeply, he just didn't know how to show it appropriately. It took us a long time to fully understand that when either A or I would get sick (just a headache or a cold, nothing serious) that C would suddenly get out of control BECAUSE he was worried about us. It wasn't because he couldn't stand not having our undivided attention or because he was selfish. Not at all. It was because the idea of us being sick, unavailable to him terrified him. It put his whole system into overdrive and it came from such a visceral place that he had absolutely no control over it.

So when A and I both became ill, at the same time, over the holidays - it wasn't smooth sailing but our boy showed us just how far he had come. This picture my friends is worth a million words and absolutely touched us to our core. Things like this is what makes all the rest of it soooooo worth it!

Get in the Pool (over at Hopeful Parents)

2011-01-27T07:00:00.001-05:00

Last summer in our darkest of times as a family I began to use an analogy of a swimming pool when trying to describe the difficult parts of our family's journey and I wanted to share it here. I make specific references to adoption because that is the journey I have made but I hope the analogy itself might strike a chord with other parents of kids with complex needs as well.

Back when my husband and I decided to pursue adoption, we never expected it to be easy. Not at all. But there was no real way for us to know how very hard it would be until we had experienced it for ourselves. Throughout the adoption process we were told again and again that to do this, to bring an older child into our home from the foster care system, would be a huge leap of faith.

I now ( a mere 9 years later) envision the adoption process as a huge leap into a swimming pool. In the adoption classes everyone stands around the pool, during the home study process and disclosure you get your feet wet, and if you want to adopt after that well you better be willing to jump into that pool with your child, whether you know how to swim or not.

Head over to Hopeful Parents to continue reading

Pause Button

2011-01-26T19:53:00.001-05:00

I am not going to lie

Today was a horrible day

ugh

and it's not over yet

double ugh

Funny how things actually start moving along, a lot less bumps during the day and you almost begin to forget what an "off" day can look like then

BAM

It smacks you upside the head.

Well on the bright side it isn't subtle. I don't do subtle so well so thanks for that.

I know the main reasons why C is so dysregulated. I understand it but it doesn't make dealing with the miscues any easier when I had no one to tag team with all day. I didn't always handle myself well. I would sometimes forget the things we learned recently in the Circle of Security attachment group I went to for 10 weeks.

I have included this video, which is a very simplified summary of what the program is. There is not a lot available for posting here as the researchers are very tight on what they release so that it is not misused. I attended a version of COS that was for caregivers of children who had experienced disruptions to their attachment but this video at least gives an idea to those who aren't familiar with this particular intervention program

So as I was saying, I would forget for a time that this seemingly happy and hyper boy that was driving me insane was actually miscuing. Which is what our kids with trauma backgrounds do - they miscue. They act like they are happy when they are scared. They act angry and push us away when what they really want (and usually unbeknownst to them) is for us to come closer and to make it better. But then I would remember. I would see the miscues for what they were. Signals that my poor boy was really struggling (and thus at the bottom of the circle in COS terminology). So then I would envision the circle with the outstretched hands. And I would know what he needed was for me to be "bigger, stronger, wiser and kind". And then I could say things like "You are yelling at me and you seem angry. I'm thinking you are actually really scared because Gwen (his AMAZING tutor/worker) has the flu. I've seen you like this when people you love and care about are sick. It makes you have a really hard day".

well lo and behold that stuff actually works. Instead of a yelling and screaming and full on meltdown he actually calmed down.

Seriously

you could see his back and shoulders just relax as he kind of slumped in his chair. His eyes lost that wide, wild animal look. Instead of looking like he was tightly wound looking for a fight he suddenly looked so scared and tired and defeated. He looked at me with those puppy dog eyes and through tears he said "In all the time I have known her she has NEVER been sick. Maybe she's going to die"

Shit that is some powerful stuff.

Then we were able to talk and we sent a text message to Gwen and she responded and the worst of the absolute drive me up the wall behaviours stopped. He continued to struggle all day but we have managed.

I know it wouldn't have been the same if I tried saying what I said to him even a year ago. Yes the Circle of Security technique absolutely would have helped me years and years ago. It would have given me something to draw from, it would have helped remind me that our kids can heal. It would have focused me on being a detective and figuring out his miscues even faster than we did on our own. It would have helped us parent. But if I had said that even last year he would have screamed in my face that I was wrong and I probably would have given up pursuing that line of thinking.

He has come so far this past year, things are changing, his brain seems to have rewired in so many places - leading the way to reduce the flight or fight response time. It's like a pause button has been installed. It doesn't always work and he might still flee or fight but at least now there is one.

What Do You Need From Me?

2011-01-19T15:05:00.003-05:00

I was speaking with a consultant at CPRI (the place that I love) this afternoon. She is new to our family and came on board following C's BiPolar diagnosis in late 2010. She and I had met briefly in the hallway between other appointments in November but this was my first real conversation with her.

For the most part things have been going really well with C. We had a great Christmas Break for the entire break (which has NEVER happened before) and the newest medication seems to really be making a difference for him. But in the past week or so we have seen a resurgence of what I now recognize as his BiPolar symptoms (extreme irritability, staying awake til all hours completing tasks in his room when most days he never finishes anything he starts without a lot of support, seeking out high carb food, chewing his fingers and so on). Only thing is, I'm the only one that now knows/recognizes these are attributable to his BiPolar. And sometimes I begin to doubt myself - particularly if faced with person after person questioning me on "How do you know that's the BiPolar, what if it's ______". This is all new to me to - not his symptoms but interpreting his symptoms in this manner.

He's holding it together though and not falling apart the short time he is at school. That is good. Nope, correction, that is AMAZING. But the school also wants to increase his attendance and C wants to stay longer. But he's coming home after 80 minutes at school and falling apart. It's obvious to me that until we get his meds stabilized (we have an appointment next week) and he's back on track with proper sleep and eating and so forth - why would we want to set him up like that? Especially when the school and his afternoon "treatment" centre still take a very behavioural mod approach to his mental illness?

So this consultant that is new to our family - I had called her last week to just touch base and she called today and I admit I am feeling pretty raw and emotional today and after a few minutes of my babbling and crying she asked me "What do you need from me?" Not in a challenging way but in this really genuinely supportive way. So I told her, I just need to know I can call her when I feel shaky, when I feel like I am the only person in this whole damn city that doesn't see my kid as a behavioural problem. That I can call her when I need someone to express to about how I feel like I can't do it one more day and then I look at my son and realize no matter how hard my life might feel, his life is that much harder and yet he continues to power through.

In the future I might need her to write letters or attend meetings and to back me up in a more tangible way. For now I just need to know that I am not alone in my understanding of my son and his mental illness.

My Baby Turned 7 - Wordless Wednesday

2011-01-05T13:32:00.001-05:00

Embracing Important Things in Life and Letting Go of Everything Else

2010-12-24T15:44:00.010-05:00

So I know I fell off the bloggy bandwagon a few weeks ago. sigh. But it was for VERY good reason.

We celebrated my birthday with a trip to Toronto to see Stuart McLean and the Vinyl Cafe at Convocation Hall at University of Toronto. It's A's alma mater so it was nice for him to be back on campus if even only for a short time. It was J's first time seeing Stuart and C's second. The boys were wonderfully well behaved and it was magical watching the show in the very very old Hall.

Then there have been all the Christmas preparations. I really wanted to embrace this Holiday season. I didn't want it to all fly by and have regrets about the things I wished we had done (or that I had done).

So I made cookies - lots and lots of cookies. C was proud to be my helper and this year he actually helped. He became a pro at using the cookie press and was quite creative in the topping placements and choices.

and gift trays and baskets for teachers, educational assistants and other school staff. Plus former co-workers and community agency professionals that have done so much for our family this past year.

There was the Christmas photo (did it myself and it went wonderful - after about 50 shots and me losing my mind) and cards (which I was determined to do as I hadn't been able to last year) and the family newsletter (yes we do one but no it isn't all just bragging about how great our kids are).

Then there were the Gingerbread masterpieces. Usually we do a prefab store bought house. This year I was determined to create one. Then the boys couldn't decide what kind. So C asked for a castle and J asked for Big Ben. Uhhhhh, ok, thanks guys - didn't they realize I had never done this before? But it went surprisingly well and we ended up with

and

So that is where I have been and we haven't even celebrated Christmas yet. For THAT we have to head out to spend it with family.

Merry Christmas

CMB 6 - Workers Who Are Worth Their Weight in Gold

2010-12-10T09:25:00.003-05:00

*** scroll down or click here to read more about what CMB (Counting My Blessings) stands for and why I am doing it. I'm not getting to it everyday but I am trying.

Long long ago I also was a support worker (aka Respite Provider, Special Services at Home worker, Consultant etc etc). I LOVED that job and I was awesome at it (if I do say so myself). So when C came along and daycare and private childcare did not pan out it became clear we would need to go one step further to provide his care while I was working. The first several years after his adoption were extremely difficult and trying times - confounded by the fact that we could not get ANY type of funding or assistance for him or our family. He wasn't "developmental" enough to access services and supports for children with developmental disabilities and our family was not in crisis enough to receive supports through Children's mental health.

So basically we bankrolled our own support workers - which meant I could keep my job (which I loved and kept me sane) as well as keep the awesome extended benefits plan. It also meant that my pay cheque basically went to paying support staff. We have had some awesome workers and a few who were absolute DUDS. I learned quickly that most would come to the interview gushing that they "loved working with all children" but only a few would still be saying that after a few days with our son. We have had some workers that had very little formal training or experience but did awesome with C. They tend to be calm and loving but able to be firm when necessary. Control freaks, we have learned, need not apply. If you are going to freak out every time my kid goes near your car or if you shrink back every time he tries to touch or hug you - well, don't let the door hit you in the ass on the way out. If you are going to need him to do everything you say the minute you say it. Uh, yah, good luck with that. If you tremble at the idea of a kid blurting out embarrassing things while on an outing - uh, yah, might want to look elsewhere for employment.

Support Workers Who Make Our Family Life EASIER are worth their weight in gold. If you haven't experienced it yourself, believe me when I say there are times where we have hired a worker for C only to find that the support and problems solving and training and hand holding of that staff actually adds to our family stress level and takes away any benefit we would have gained from having proper support.

We have been blessed with some amazing support staff over the years and currently. They all have been unique - no two are even remotely alike on the surface. Well, that's not true - the ones that work out the absolute best have ALL been female and they all have been fairly petite with soft voices and extremely loving personalities. But at the core, they have all been able to maintain the control that C so desperately needs someone to hold but they have done it in a way that does not translate into power struggles with him. They allow him to save face, they allow him to use his voice and to negotiate. They somehow manage, no matter how hard the day has been, to smile and hug him and to promise to come back. And they do - they keep coming back. Even those, who through life circumstances (graduation, new jobs, marriage and so forth) - those workers worth their weight in gold, they stay in touch. They send letters or emails, they take time to stop by even for a few minutes. They help C to learn that while people may need to move on in certain aspects of their life, they can and do remain your friend. They still care - just from afar.

To all those who support our son, in the trenches where the days can be long and hard but full of awesome rewards, we count you as one of our blessings and we will be forever thankful and indebted to you.

Counting My Blessings 5 - Campfires, Trails and Togetherness

2010-12-08T08:40:00.008-05:00

Counting My Blessings 4 - Angels Who Walk Amoung Us

2010-12-07T09:04:00.000-05:00

Do you ever have those one time encounters - where somehow this stranger just says the right thing at the right time or does something to help you in a way that you didn't even know you needed? Then that person is gone and usually you don't even know their name but what they did for you, the memory of that, is burned into your heart and soul forever???

It has happened so many times over the years, particularly when I was in the midst of dealing with C and a meltdown in some public place and at my wits end, completely out of ideas as to how to get him out of the situation and safely home. One of the first times I remember was when C was enrolled in a preschool sports club at our local community centre. We knew he was struggling at school and had difficulty reading social situations and acting appropriately but we didn't have a "diagnosis" to pin on him to try to explain to people. We knew it was more than him just being immature or choosing to be a "brat". Unfortunately other people didn't know and I was struggling to try and get the staff at the community centre to understand and to let me help. On this particular day, I was feeling embarrassed and chastised and I felt like all the eyes of the parents in the waiting room were on me. I had settled C back into class and flopped on to a chair - ducking my head and willing myself not to cry. I vacillated between being angry, embarrassed, overwhelmed, anxious - the whole gamut.

A lady came and sat beside me. She began to speak. She shared the story of her brother - of who my C reminded her of. This woman and I were strangers. But she opened up to me and we both got tears in her eyes as she spoke of her brother and her admiration for her mother - oh how her mother worked and fought for her brother over the years. Just before she left she told me "he reminds me of my brother and he's doing great now. And you remind me of my mother - you are doing great". She left, I never saw her again but I have never forgotten her.

There have been other times - two times that stand out in particular revolved around someone hitting my car. Seriously. On two different occasions, several years apart. The first time we were at the school, which is just down the street from our house so I would rarely have my car parked at the school. But I had been called because C was having a rough afternoon and so I had raced directly to the school. Once I arrived things went quickly down hill, which was not the usual course of events, and it was dismissal time and my son was wreaking havoc in the secretary's office - refusing to come with me, not even letting me approach him. I was standing there, actively praying silently "dear god, please help me through this. Help me to help him when I have no clue what to do". Suddenly a man, who I had NEVER seen before, enters the office and says "excuse me, I'm looking for who owns the very small grey car out front" and it turns out he has backed into my car but instead of just being like so many people and just driving away he has come to find me. Me, the woman who has just had an awful day at work only to be topped by a 7 year old ball of energy that was my son. Suddenly, my son stopped - his body grew still, his tears subsided, he stood up and looked at the man "you hit my moms car?" and with that my son had moved on to something else. Overwhelmed by the need to fulfill his rightful role of worrier and surveyor of his mother's car, he walked calmly with me to the vehicle. In the end there was a small dent in the licence plate - that was it. I never saw that man again and no one at the school could identify who he was. I knew, he was an angel sent to help.

The second time was remarkably similar - C was at Cubs, where he had made friends and was doing very well but on this day he had become dysregulated and I couldn't get him to leave. I didn't want him to be humiliated and I didn't want people to judge him for this momentary lapse. None of my tricks worked though and I was quickly getting pulled into the abyss that C and I were always teetering on at that time in our lives. Suddenly a woman - never seen before, never to be seen again entered the church hall to inform us she had backed into someones vehicle - a "small grey car". C stopped in his tracks and grabbed his coat. We went out to survey any damage (a very minute dent in the side panel - soooooo worth it in the long run). The woman was soaking wet as it was pouring and she looked so distressed. I knew A might be unhappy with me but I just thanked her for letting me know and waved off her insurance information - it was so minor and I needed to get C home.

The first angel went out of her way to share with me - the other 2 disappeared as fast as they appeared. All 3 I have no doubt are angels, sent to bless us when we most needed it. For that I am forever grateful.

Counting My Blessings 3 - His Love

2010-12-03T08:27:00.004-05:00

We met when I was 18 and he was 24. I was a first year University student, he was living and working in Toronto. It started out less than ideal but fate must have been working its magic.

I know he tried not to love me. He thought the age difference was too much, that we wanted different things in life. He had been hurt before but he wanted to find love, to find a wife and to start a family. I had to convince him I wanted the same. He told me he loved me for the first time before he meant to. He asked me to marry him before he meant to. He loved me fully and completely.

I have loved him for half my life but even more importantly I have had his love for all that time. Through the early days of crappy jobs and crazy school schedules. Through working full time, going to school full time and planning a wedding long distance. Through sorting out who I am as a person and the heartache of years of infertility. Through adoption and raising our spirited boys. Through times where I questioned whether our marriage could make it - I have had his love. He has loved me through it all, despite it all, perhaps in some ways because of it all.

I often take his love for granted. But I want him and all of you to know that his love is the most important blessing in my life.

Counting My Blessings 2 - Home

2010-12-02T06:52:00.004-05:00

We lived in an apartment on the "bad side" of town for almost 7 years, saving up while all the young couples around us jumped into big time debt and bought houses with astronomical mortgages. I rallied against A many times, trying to get him to agree to move, even to a rented town home just so I could feel like we were getting on with our lives.

He didn't give in and I am so thankful for that. When it was time to look for a house to buy we did weekend after weekend of open houses and A kept me aimed at the houses at the low end of our budget - again I was slightly resentful but again I am so thankful.

The summer of 2002 we moved into our new home and we have no intentions of ever leaving. Once in a while we think about what it would be like to live in a larger home, one with a guest room or even an in-law suite for my mother in law. Once in a while I visit friends and allow myself to be envious of their vast rooms and stylish kitchens. But the truth is we likely stay where we are for MANY MANY years and with my financially frugal husband our mortgage will be paid off around the time C graduates highschool.

Its a modest home. We often neglect her. But she is ours and she is a part of our family. We know we are so blessed to have our home - so many people have less by far and we know it.

Counting My Blessings Day 1 - Coffee, Chocolate and Boxes

2010-11-30T20:12:00.005-05:00

Wordless Wednesday

Counting My Blessings

2010-11-30T08:46:00.002-05:00

Every year since becoming a mom I have wanted to really savour and relish the holiday season - every year I am so busy and everything just slips by. Last year was the worst by far - our whole family was in crisis and it was all we could do to get through. For the first time in almost 20 years I did not send out a single Christmas card - just couldn't do it. And that was ok - it was necessary. We still went through the motions the best we could last year - still made the Gingerbread house and decorated the tree. I hardly remember any of it. I was in survival mode.

This year I am not working, we have more supports in place for C and we are all in a much better place. 2010 has been, by far, the hardest year for our family and I can't say I will be sad to see it go. But amidst all of the hardship there have been some amazing things to come - renewed friendship, random acts of kindness, reconnecting as a family, maturing and taking some steps toward independence and so on. So really, as my the title of my blog indicates - I am usually a pretty optimistic and grateful person. My boys might drive me crazy at times but I do view them as blessings.

When engaged in extreme parenting of kids with complex needs it can become second nature to live from one crisis to the next, merely surviving. There were long periods of time this past year that I was sure we were losing our son to the depths of mental illness he would never return from. He has returned and our family is once again strong and together and honestly even better than we were before. The one thing I learned early on in all of this is to count my blessings and to revel in each moment that was good, one day (or hour or even second) at a time.

So in December (I'm going to try for everyday - we'll see) I am going to post about the many blessings in my life. Some will be somewhat random and fun and others will be very serious and thought out. I hope you will stick around and perhaps post some of your own blessings.

What I Have Been Up To

2010-11-25T15:24:00.003-05:00

Amidst the heavy advocacy we continue to have to do for C we were planning a trip away, just A and I, to Chicago.

Its a city A has always wanted to visit and I want to go anywhere A wants to go.

So for weeks I cleaned and organized the house and tried to co-ordinate care for the boys. We thought back in September that we had a plan for Respite for C all worked out. Then it became glaringly and painfully obvious that those plans were not going to work. On to Plan B and thankfully Grandma came to the rescue! She adores C and while she doesn't always understand him and his ways her love goes a long way to helping him through the day.

With all the plans in place we headed out

I am NOT a seasoned traveller. Someone REALLY should warn people about the cramped interior of these planes. Seriously I started to have a panic attack - I didn't even know I was claustrophobic until I sat in my seat.

Luckily the flight was short and A was a blessing with his keen sense of direction once we landed. He navigated us through the airport and public transit with ease. By 2p.m. we were relaxing in our awesome hotel room at Homewood Suites. Very nice, clean, quiet and superb complimentary breakfast. It was central to everything.

Over the next few days we enjoyed amazing views, food and shopping. Navy Pier, Magnificent Mile, Museums, of course the Hershey store.

Most of all, for the first time in who knows how long it was just my man and I. We ate, we walked, we talked and soaked in everything. We weren't in a rush, we weren't worried about the boys - REALLY I wasn't worried about them at all for once. By the end of the trip we were physically exhausted, Chicago is not for lightweights, but our spirits were well rested and rejuvenated.

Just for Today

2010-11-17T10:29:00.002-05:00

Just for today, I'd like to not feel like I have to fight for my kid

or that I have to convince people he DOES belong

Just for today, I'd like to not have a lump in my throat

or a huge knot in my stomach

Just for today, I'd like there to be no phone calls and emails

or the need to explain to people the same things over and over and over

Just for today, I'd like to not have to champion my son

or to feel like if I don't speak up my son, and others like him,

will be bullied and hurt by the people who are supposed to help them

Just for today I'd like the world to not be a scary

and potentially dangerous place for my son

Just for today I wish people could just do the right thing

because it's the right thing to do

The Perfect Holiday

2010-11-04T14:00:00.004-04:00

I am wandering around the house putting away the Halloween decorations today and I'm feeling a little sad. This Halloween was REALLY good. I never really went all out for Halloween before, its always been an okay but not a real stand out holiday for me in any way. Not to mention that for C, October is always a VERY hard month. Lots of trauma anniversaries and upset and school is getting harder and . . . well you get the picture. Add to that the excitement and dysregulation (like the time I had to carry all 50 lbs of him kicking and screaming home about 4 blocks over a misunderstanding) that Trick or Treating brings and usually by October 31st all I want to do is curl up in a fetal position and sleep til New Years.

But I do like to throw parties for my kids. And last year I realized J rarely gets to have friends over because, well, life can be hard in this house of ours. So I pushed aside my own exhaustion and we planned a Halloween party.My long time best friend and her boyfriend came from out of town (they even dressed up!) and everyone had a great time, especially me.

With everything that has gone on in our family this past year I am trying to slow down, take some deep breaths and enjoy life more. So I went all out with the decorations at Halloween and we planned another party. While we were out with the boys Trick or Treating I realized I was very content and relaxed. J was no longer tripping and falling all over the place. They weren't running off in different directions. C was so calm and regulated that he became an impromptu helper to several children who were younger than him. He held screen doors open for them and knocked for them, he let them go ahead of him, he steadied young costumed children who were jostled by eager counterparts, he reminded other older children to let the little ones go first. He charmed people with his manners, going above and beyond a simple "thank you". He would give unique and meaningful feedback to people such as "love your jack o lantern" or "awesome decorations". He gave a heartfelt "Happy Halloween" as a parting comment at each door.

We then came home and he was so exhausted he didn't want to go back out with his brother. So he sat, all bundled up on the front porch, waiting for Treaters - complimenting costumes, chatting people up while he practically filled their bags with candy from our bowl. He was in seventh heaven. He is such a people person but often is unsure of what to say or do. It was then that I realized Halloween is the perfect holiday for him. He gets to dress up and pretend, he gets to meet new people and be helpful, he gets candy given to him at strangers doors (plus he gets to peek inside their houses. lol) and he gets to reciprocate by handing out candy from his own house. We couldn't have planned it better if we tried. Too bad Halloween is only once a year.

2010-10-29T06:29:00.002-04:00

I am sitting here at the computer responding to a few emails before I quickly eat and then maybe finally shower and then I need to bake some cupcakes and clean and and and . . . all before I go for yet ANOTHER treatment/placement/services meeting about C. I started to think - how many of these meetings for C have I been to??? Honestly if I had to guess I would say it has been no less than 150 in 8 years. Thats NOT including all the medical appointments.

Each meeting is AT LEAST an hour. Usually a lot more and usually longer because of me - I like to be thorough and C is a complex kid.

So even if we are conservative and say half those meetings are 1 hour and half were 2 hours long then that means I have spent at least 225 hours in meetings

that's not including all the phone calls and letters leading up to them

its not including the travel time to and from and MANY I have to travel 2 hours away to get to!!!!

Oh my, and its not including all the parent and kid groups for treatment and again we travel over 200km each away to get to those - sometimes we have to go once a week for 10-12 weeks (like I am now for an attachment group).

UGH

No wonder I am soooooo flipping tired of meetings

I have one this afternoon.

Its very important.

I don't want to go

Can you imagine if I just didn't show up?????

All of you other mom's of "spirited" kids know what I am talking about here. We love our kids but it feels good to think for just a minute that I don't have to go to this meeting. I could just stand there and stomp my foot and say "NO MORE!!!!!!!!!!!!!!!!!!!!!!!!!!!!" and instead go get a Pumpkin Latte and sit by a warm fireplace somewhere and read a good book.

Getting Clear - Post on Hopeful Parents

2010-10-27T08:29:00.003-04:00

I don't know about you but I did not expect to have to become an expert mediator when I became a parent. I suppose I anticipated honing my parenting skills as my children grew, making mistakes and learning from them. If pushed I would have agreed that there would likely be times I would be put in the uncomfortable role of needing to confront an adult in my child's life over something but I would have guessed it would have been something along the lines of not being played enough on the soccer field, or being wrongly accused of something at school. I didn't anticipate the sometimes daily onslaught of phone calls and meetings, intense negotiations that even the most skilled and trained mediator would find challenging.
Funny thing (well more ironic than funny "ha ha") is that I am a very socially anxious person. I have a hard time talking on the phone and could go days without even talking to someone if allowed. The idea of going to a room with as little as 3 people in it for whatever reason is enough to make me shake with nervousness and my mouth go dry. I hate confrontation of any sort and I even have a hard time figuring out how I FEEL about things. Most people who know me are completely flabbergasted when they find this out about me. My own husband of over 15 years used to think I was being flippant when he would ask me "Well how do YOU feel about it?" and I would answer "I don't know". I really didn't. As soon as my emotions were activated in any way that was remotely threatening or overwhelming to me I would "shut down" and I couldn't think straight at all. I would just feels waves of raw and very intense emotions, weird things would happen with my vision and more often than not I would no longer really be "hearing" anything that was being said. For those old enough to get the reference, think of the teacher on the Peanuts cartoon "wah wah wah". I didn't know if I was mad or sad or frustrated or feeling threatened. All I knew was there was a panic bell going off in my head.

To read the rest head over to Hopeful Parents

Still Here

2010-10-07T14:18:00.002-04:00

I wanted to pop on and let you all (all 5 of you - lol) that I am still here but my kids were gracious enough to share their cold with me last week that has seriously kicked my butt. I haven't been this sick in a very long time.

But I woke up this morning and realized.

I have been sick for about a week. During that time there have been many changes and challenges - particularly for C. But he's doing GREAT!

In October EVERY year for 8 years C has struggled greatly. Not sleeping, hoarding food, out of control in a way that you know isn't his choice and is so painful to watch not to mention experience.

But he's doing great.

I probably just jinxed us. But honestly if I can openly bemoan the tragedies and struggles I should be able to shout the wondrous events from a mountain top.

He's doing great and so are we. Well, if I can get rid of this cold then I'll be great!

Hopeful Parents

2010-09-27T07:57:00.004-04:00

I am so excited to be over at Hopeful Parents today writing my first post about the role and need for hope in my life. I will be posting on the 27th of every month at Hopeful Parents so come on over and check it out.

Bittersweet

2010-09-22T08:22:00.002-04:00

The three boys alternate between walking and running all the way home. They barely stop at the street to make sure it is clear before bolting across - talking excitedly all the way to our house about what they will play with first and the funny things that happened at school. At the house there is a brief disagreement about whether they will play inside or out. The vote is 2 to 1 for inside. The guests want to play inside, the host knows he has lost on 2 counts (the sheer numbers and the manner rule that dictates guest gets first choice of activity). He is disappointed but no voices are raised coming to the decision, no feelings hurt. It takes all of 30 seconds and then they are agreed and all head inside.

Once inside they all throw off their shoes and backpacks, practically falling onto the toys before they even have their things off. I place snacks on the table and alert them they are there and then leave the room. I listen from my computer desk upstairs - the negotiations, the pretend battles and the plans for bigger and better adventures. No one calls for me. No one fights or gets physical. No one needs assistance in anyway.

I am not used to being this mom. I love it (I think), I have longed for it but it feels foreign. For my entire time of being a mom I have been actively on duty during every moment. I don't know how to be the mom who dissapears and only comes back once in a while to check in. I WANT to be that mom - I don't want to be a helicopter parent. I have just had to be. So this, this is very unfamiliar yet I hope it becomes more common.

While I sit at my desk and the boys play I am painfully aware that 2 of the three older siblings of these boys are down the street at the school, playing soccer. For the past two years that was my son as well. This year things are much different. My oldest is, at least for now, attending a Day Treatment school. There will be no soccer team for him this year. That hurts but I am also thankful that we are in a better place than we were several months ago. That we are on our way back, maybe to future soccer teams. There is also my awareness that if my oldest were home at the end of the school day on this particular day, these friends never would have been able to come over and my youngest never would have had this experience. That's hard to swallow. We wanted to believe for so long that we were doing a great job at managing C's needs and yet still fulfilling the needs of J. But how could we have been when C's daily rages meant not only was J expected to keep himself busy but no way could having people over ever have worked out? 6 year old boys should be able to have friends over.

So it is bittersweet that my youngest gets to experience "typical" 6 year old boy activities and I mourn a little for the "typical" experiences that C worked so hard to achieve and then, at least momentarily, lost. I grieve for all those experiences that C (and I) never got to have. I love where my boys are at right now, the stages and the experiences. I am so grateful for so much. But today is bittersweet.

Sweet Sweet Denial

2010-09-18T09:19:00.004-04:00

I admit wholeheartedly that denial is one of my strongest coping strategies.

Denial often gets a bad rap, people berate themselves for living in denial and people judge each other about states of denial.

Denial and me - we are like that (you can't see me but I am crossing my fingers together to connote that we are very very close). I am good with that. Denial is a welcome friend at times.

Unfortunately I also have too much insider knowledge sometimes. Having worked for over 15 years in early intervention with a focus on mental health and for quite some time as an advocate and resource to families of children with disabilities - sometimes I have way too much information inside this brain to be able to deny the path we are on or what something might mean. That's hard. When I am dealing with an agency in town I can try to only go by the experiences we directly have with that agency but I cannot, and should not, ignore other people and family experiences with that same agency. If I have sat in a meeting where a professional for that agency acted reprehensibly and then when the parent appealed to higher powers and was rebuked - then I need to take that into account for my own family. If an agency acted in (what I think is) an abusive way to a child in their care - I NEED to take that into account when considering options for my own child.

But sometimes that knowledge and experience can make you hyper vigilant and it becomes very hard to trust. You cannot take people at their word - you find that you need them to prove to you over and over that in the end they will do what is right and do the least harm possible. That, as many of you know, is exhausting all on its own. I am already exhausted by the time I drop off C every morning - to then spend the day trying not to worry and the nights going over and over the events of that day - beyond exhausting.

That makes me sad. That is how my son lives and now I follow in his footsteps. I don't worry that my son will be misunderstood or hurt (emotionally more than physically) in some way. I assume that he will. Instead I hope that the occurrence will be minimal and that the people involved will be able to repair their relationship with him AND me.

C had a very difficult day yesterday in his day treatment program. From all accounts (even from C) it seems as though they handled it quite well. Of course there are things that I would have done differently. Of course I only have part of the story and will never get the whole story as I was not there. Of course there are a couple of items from the day that give me pause and concern but no alarm bells are screeching. At least not yet. A is counselling me to go in on Monday and focus with them about all the things they did right - much like the approach we would take with C himself. Focus on the positive. I know he is right, I had the same thought. But I also feel worried that I might reinforce the negative aspects of what I understood occurred. There aren't many (that I know of) but they feel important to me because they are important to C.

So as we head into this weekend I am inviting sweet denial to come on over and hang out at my house. She did a great job around the whole domestic duties issue (my house is a mess and I have been blissfully able to ignore it) and now that I have emerged from denial about the house there should be plenty of time and room for her to work her magic as far as C and agency issues. A healthy dose of denial for even just a few days would be welcome.

World Suicide Prevention Day

2010-09-10T19:33:00.005-04:00

Tuesday December 11th, 1990

Right now I am sitting in front of my locker and no one knows what I have done. I'm scared. Scared that everyone will hate me and no one will understand what I've just done. Scared to live though. I really am. I honestly can't see a future. I want someone to help me, to take away the hurt and make me happy but no one can.
Please forgive me for I am so sorry.
______________________________________________________________

That was part of the suicide note I wrote on my 17th Birthday.It was about 4 weeks after I had BEGGED for help and sat in the Hospital Emergency room with my high school guidance counsellor for 5 hours. I had two wonderful teachers that had noted something was wrong and they worked so hard to get me the help I needed. Children's Mental Health services and awareness in 1990 was even less than it is today. I had "held on" and managed to see a Psychiatrist through the emergency room and he wrote a script for Prozac, with 2 refills, without a second glance. There were no other services or treatment offered, just the prescription and an appointment for 6 weeks later for follow up. My loving and concerned yet ill informed parents filled it and gave me the bottle to administer to myself. I took it for several weeks and was not feeling any better. The day after I got the prescription re-filled was my birthday and I was just more miserable and more lost, more lonely and more desperate. When I downed the contents of the bottle on my lunch hour at school I hadn't planned to do it that day or in that way but thinking and writing about my death had been the primary focus of my life for quite some time by that point.

I remember standing there, stunned, staring at the empty bottle and thinking "now what?". Part of me felt a little exhilarated with the knowledge that my horrible existence would soon be over. I sat at my locker, my heart racing, and wrote the note. Then I realized I would likely pass out at my locker and be found unconscious or dead by some unsuspecting student. I felt horribly guilty that someone would find me like that. This wasn't at all what I had envisioned when I thought of the various ways to end my life. I began to panic. Eventually I went to my guidance counsellor and handed her the note I had written.

Beyond that was a long and very painful path of multiple hospitalizations and medication trials and repeated suicide attempts. I had some horrible and scary experiences while hospitalized as a 17 year old in an adult Psychiatric ward. I also met some amazing people along the way who began to help me rebuild my life and uncover the causes of my severe clinical depression. I lost and found friends along the way. My parents experienced unimaginable pain and sorrow. With the help of a therapist provided by the hospital where I had been an inpatient I was able to do a great deal of healing. With the right medications I was able to move past the deep depression and anxiety and function again.

20 years later I took my own 11 year old son to the emergency room after he brought me housecoat belts and rope, begging for me to tie him up because he was worried he was going to hurt himself. He repeatedly told us that he wanted to die. That life was too hard and he wanted to die so it all would stop. He begged us to keep him safe. We were sent home from the emergency room. There were no beds available, we were told there was nothing they could do. Thankfully we didn't listen. We made calls, pounded on doors and refused to stop until he received the treatment that he needed.

It goes without saying that I am glad I did not die that day in 1990. But my pain was so real and so raw I still break into a sweat when I think about those days. I am glad my son was able to tell us this past spring how horrible and desperate he felt. Unfortunately too many people die from suicide every day. The general public often thinks those that attempt or die from suicide are weak or desperate for attention. Mental illness is as much a true illness as Cancer and Diabetes. People who are struggling with any form of a mental illness need our support and assistance not our judgement. Its not that they want to die - they just don't know where to go, who to talk to or what to do. They just want the pain to end.

Today is world suicide prevention day. Here are some resources:

http://www.iasp.info/index.php

http://www.cmha.ca/bins/index.asp

http://www.youtube.com/watch?v=I1w9j8jTG_Q

Do it Anyway

2010-09-03T08:31:00.002-04:00

A few months ago, during one of my darkest and most hopeless of times, I found myself questioning if all that hard work for so many years being C's mom had been for nothing. Had we really added to his life if where we ended up was where all those "professionals" we saw in his early years predicted? I sat in front of our Social Worker and told him where my dark thoughts had led me that day. He reassured me that although perhaps I couldn't see it through my pain that day, we had done a lot for our son. I asked him to please just keep reminding me over the next few months that being his parents has made a difference to his life. He honoured that request as did the rest of the team. I needed their hope and conviction while I found my way out of the deep dark hole I was in.

A friend then sent me the following in an email a few days later. It hit home then and it hits home now as we try to navigate a new system and educate and build relationships in our home community with service providers.

People are often unreasonable, irrational, and self-centered. Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyway.

If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.

If you are honest and sincere people may deceive you. Be honest and sincere anyway.

What you spend years creating, others could destroy overnight. Create anyway.

If you find serenity and happiness, some may be jealous. Be happy anyway.

The good you do today, will often be forgotten. Do good anyway.

Give the best you have, and it will never be enough. Give your best anyway.

In the final analysis, it is between you and God. It was never between you and them anyway.

~Mother Teresa

Family, Funnel Cakes and Ferris Wheels

2010-08-29T18:17:00.015-04:00

Throughout this year, one lesson we have taken to heart completely is to enjoy and savour every wonderful moment we have together as a family. With C doing well we headed off to Toronto for our 2nd Annual Canadian National Exhibition (CNE) family Getaway.

A rare moment of brotherly love to start off the day. Truth was they were both worried that the other one would step over the yellow line painted by the tracks - A and I were worried that in their desperate attempts to "save" each other that one of them would get thrown over the side. SIGH

He plugged his ears out of habit, and yet, the GO Train was not as loud as it used to be AND even though the Ex was very loud at times - it didn't seem to bother him as it had in the past.

This is an actual picture of me with my two boys on that insane ride. I felt guilted into joining my boys in some sort of ride and at least this one wouldn't spin me around violently. Thanks to A and my best friend from highschool who joined us that day - I felt I had no choice but to take the plunge. (Don't tell them but it ended up being a great experience for us all).

What is the Ex without a Funnel Cake??

J was SOOOOOOO excited to discover that this year he was old enough to go on most of the rides, including being able to drive his own bumper car. He did pretty well too.

We didn't tell the boys ahead of time but we were hoping we might be able to last until after dark - when the lights get turned on and the Ex is just magical. We knew there was a very real chance that C would not be able to last that long but . . . .

We didn't stay long after it began to get dark. But long enough for A and I to feel nostalgic for our younger years and the boys to experience the Midway come alive. We were all feeling pretty tired and worn out (and full!!) but the boys went repeatedly through this fun house before we left . . .

My childhood friend commented that perhaps they felt at home there - that was when I looked up and read the sign with the name. We rocked with laughter then gathered up the troops to head home. A glorious and much needed day for our family.

Longing

2010-08-25T10:49:00.004-04:00

Driving down the street I almost pass by the boys on their bikes without a second glance. But I notice them - goofing off, treats from the store in one hand, pretending to run each other off the sidewalk. Their tanned skin and bruised legs tell stories about their adventurous summer.

I realize I have been sitting at the stop sign moments too long - it has hit me. These almost adolescent boys enjoying a long summer day of freedom - they are boys in my sons grade at school. He started Junior Kindergarten with all of them - when they were all on equal footing. Now they are worlds apart from my son in so many ways. My heart hurts for the things my son cannot do and tears threaten to spill down my face.

I glance at my son who is sitting in the passenger seat beside me. Has he noticed them? Does he long to be free like they are? He gives a little wave to them as we drive by. There is my answer and I find myself wishing in some ways that he was less aware, for his sake. As we leave them behind he leans his head against the glass and closes his eyes.

He is all too aware of the differences, his longing is strong even if it is not voiced. I hold back tears but I reach over and take his hand. He squeezes it and I wish I knew what to say to make it better. But I know nothing I say would take away the pain of his longing and his feelings of loss. There are no words.

Today I Almost Fell Off My Chair

2010-08-24T22:14:00.002-04:00

The phone rang and I walked to it, glancing at the call display and seeing an increasingly familiar number for the local treatment centre C recently began attending during the day. I realized my stomach had clenched and I had stopped breathing for a moment - an old familiar reaction to what I assumed was one of "those" calls. I considered for a moment not picking up. Denial can be a good thing, it's my friend on days like today. But I picked up and tried to brace myself for what would come.

"Hi Mom" greeted the chipper and clear voice of C.

"Hi C" I responded, hesitantly, trying not to convey my assumptions and worry through the phone as I waited for the onslaught . . .

"I just called to tell you that I'm having a great day. I played Chaotic with Joe. I got out of the pool 5 minutes early - it was my idea" His words came tumbling out. But they were full sentences, clear, easily understood. No need to interpret and ask further clarifying questions to understand the intent.

He was having a great day

He called just to tell me that

He played a card game with someone

He got out of the pool

It was his idea

Then as suddenly as the call had begun it ended with "I gotta go mom - we're heading outside to play ball. Bye. Don't come early"

He was going outside to play

He said he had to go

No whining or begging me to come get him

In fact - "Don't come early"

It took me a few moments to realize I was still holding the phone, dazed and confused, the fast dial tone scolding me for not hanging up.

In Case We Were to Ever Forget

2010-08-21T17:43:00.002-04:00

C has been home now for just over a week. For the most part things have gone well, particularly considering the plans for him to start attending our local treatment centre summer program from 9am-3pm each weekday was put on hold until after some things got sorted. I am a little bitter about that delay, as is C, but that's a different post.

For the most part, as I said, things have gone well. A blow up maybe once a day or once every two days. Some spikes in his anxiety that put us all on edge but also some insight on his part as to what is going on at that moment - mainly an ever so slight acknowledgement that his OCD is trying to wreak havoc on him. That acknowledgement is HUGE, no matter how slight, as it has been something we have been working towards for YEARS. So there were a couple of days where I started to question the big respite/day treatment plan we have submitted for C. Maybe we were going overboard, maybe he's improved and its really not that dire anymore.

Then mid-week both A and I started out with what we thought were seasonal allergies but ended up being summer colds. UGH. Then a long time co-worker and friend of A's passed away - he had been ill but no one expected his death so quickly. It was and still is a shock. Of course, throughout all this we still have to parent our boys. As I sit sniffling at the computer and A languishes on our bed, both of us willing the other to get better to take care of things - during all that - C and J continue to make messes, fight, lose things, whine - you know, act like kids. But with C it is even more. He just CANNOT understand that our pain and illness, while they really have nothing to do with him, are very much real. No we are not going to just get up and get things every two minutes. Yes, our tempers are short and patience is non-existent.

We begin to come down harsh on him. Almost berating him for not understanding why things are not normal in our house right now. Then we beg him to just try to make do. Then we threaten. Then I cry and he becomes distressed by my tears. Still though he doesn't know how to make allowances. He becomes angry and physical, he begins to threaten to run, he honestly cannot back down and has backed himself in a corner. He doesn't know how to adjust his expectations, how to need us less. This whole weekend (and its only Saturday) seems to be a reminder, in case we were to ever forget (like I started to this past week), why we feel so utterly tired at the end of each day and why we need such high levels of supports in place.

Bill of Rights

2010-08-16T15:08:00.004-04:00

I am preparing for one of the most difficult and important meetings about C that I have ever had. Our whole plan and the funding associated with it is currently tied up in the assumption that he will attend Day Treatment at one of our local Children's Mental Health agencies. If this meeting does not go well I will be faced with either another HUGE fight to get him the resources and treatment he so desperately needs or I will have to decide the fight is not worth it and retreat - possibly still having to fight to reinstate the resources and supports we had before. And as I blogged before, this is no small feat - I am TERRIFIED of us going back to that dark place we were in before if we do not get the supports our family needs. I am just not willing to sell out my child and his needs to do it.

Amazingly enough, although I am anxious (when am I not???) - I am also really calm in knowing that what I am advocating for my son is the absolute truth and what he so absolutely requires. I am his voice tomorrow and I will represent who I know him to be. I will not be swayed by arguments that try to convince me of any truth other than his own. He is a GOOD kid who has worked HARD to get to where he is at. Adults around him using the Collaborative Problem solving (CPS) technique is what has brought him back from the brink of ultimate peril.

And with that I give you

Bill of Rights for Behaviourally Challenging Kids, © Ross W. Greene, Ph.D.

Behaviorally challenging kids have the right:

- To have their behavioral challenges understood as a form of developmental delay in the domains of flexibility/adaptability, frustration tolerance, and problem-solving

- To have people -- parents, teachers, mental health clinicians, doctors, coaches...everyone -- understand that challenging behavior is no less a form of developmental delay than delays in reading, writing, and arithmetic, and is deserving of the same compassion and approach as are applied to these other cognitive delays.

- Not to be misunderstood and counterproductively labeled as bratty, spoiled, manipulative, attention-seeking, coercive, limit-testing, controlling, or unmotivated.

- To have adults understand that challenging behavior occurs in response to specific unsolved problems -- homework, screen time, teeth brushing, clothing choices, sibling interactions, and so forth -- and that these unsolved problems are usually highly predictable and can therefore be solved proactively.

- To have adults understand that the primary goal of intervention is to collaboratively solve these problems in a way that is realistic and mutually satisfactory so that they don't precipitate challenging behavior any more.

- To have adults (and classmates) understand that time-outs, detentions, suspensions, expulsion, and isolation do not solve problems or "build character" but rather often make things worse.

- To have adults take a genuine interest in their concerns or perspectives, and to have those concerns and perspectives viewed as legitimate, important, and worth listening to and clarifying.

- To have adults in their lives who do not resort to physical intervention and are knowledgeable about and proficient in other means of solving problems.

- To have adults who understand that solving problems collaboratively -- rather than insisting on blind adherence to authority -- is what prepares kids for the demands they will face in the real world.

- To have adults understand that blind obedience to authority is dangerous, and that life in the real world requires expressing one's concerns, listening to the concerns of others, and working toward mutually satisfactory solutions.

I have printed it. I will laminate it tonight. I will place it before me at tomorrow's meeting. I will remind myself that I am not delusional. That I KNOW what my son needs and how he can be set up for success. It is not with coercion, physical force, threats and isolation. It is with mutual understanding and respect, its with collaboration and problem solving. It's not easy but I have seen it done. It works.

Collaborators not Prison Guards

2010-08-13T19:12:00.002-04:00

Even before I became a parent, I worked for many years with children of varying ages with a variety of strengths and needs. Some of the children required physical assistance due to their diagnosis such as Cerebral Palsy. Others had Autism or Down Syndrome or developmental delays for unknown reasons. Some came from horrifically neglectful and/or abusive homes.

In my role as a Respite Provider, Special Services at Home worker, Physiotherapy Assistant, Intake Officer, Classroom teacher and finally Child and Family Consultant - I was charged with finding ways to utilize the young persons strengths to attempt to make gains in the areas that they struggled in.

Not once did I put a child who could not walk very well in time out because they weren't walking better. Not once did I comment to a parent that a child with a visual impairment could "do better if she just tried harder to see". Never was it part of the Support plan to implement behaviour management strategies to ensure that the child with seizures no longer inconvenienced the rest of us by having a seizure in their classroom.

Because that would be downright ridiculous and offensive - right?

Then WHY oh WHY is it alright for these same practices to be put in place for a child whose Neurology means they become inflexible in the midst of high anxiety? When intrusive thoughts compel them to lash out in anger or to try to run away. Why is it accepted practice to fill an IEP with behavioural goals the child will never be able to achieve just because "well all kids need to be able to do that"?

It hurts my heart and it damages my sons self-esteem every time he is set up to fail. Where behavioural expectations and consequences are too extreme to allow for his complex neurology. Why do we expect the child with the severely compromised neurology to make the most accommodations and change? Why wouldn't it be the adults in the child's life that could help set them up for success? When people fail to understand the reasons for why he acts as he does they disrespect him and his unique needs. I know my son and I know that when he is "non compliant" or "combative" it is because something has gone haywire in his usual routine or he's having anxiety or an OCD moment and the adult in his space either has not recognized it or did not have the tools to address it appropriately.

Imagine living in a world where everyday you are expected to strive to overcome huge neurological and mental health issues just to try to meet other people's expectations. Where you are never smart enough, calm enough, insightful enough. You are just so clearly never ENOUGH in their eyes. How would you feel being faced with that everyday? How long would you be able to function without shutting down or lashing out.

My son IS enough. He lacks some skills he needs. We hope he will continue to make progress but it is quite possible his brain might never be able to make some connections. From early trauma or neglect or the neurology he was born with - we don't know. We DO KNOW he has good reason for not behaving the way other children do. But in the end he is a child. A very good, loving, eager to please child who needs more collaborators in his corner rather than prison guards doling out arbitrary punishments.

When Life Gives you Lemons

2010-08-11T15:50:00.004-04:00

I admit I cringe whenever someone counsels me to "make sure to do things for you" and other pat things people say when you are a mom and that get magnified when you are parenting a child with complex needs. I hate being told what to do and I used to think "yah right, I'll find time for me when I am dead"

Truth is - even before kids I wasn't good at doing things for myself. I have a long track record of giving insatiably to other people. Always trying to make the world a better place, doing things for others, saving the world - you know.

The past year has shown me the deepest and darkest of how bad things can get if I allow myself to get burnt out. If I don't find ways to replenish and relax I won't survive and then who is going to take care of my family??? So I have been taking baby steps to reducing my stress and making time for myself. Today I went for a massage. Those that know me will be shocked. I shudder at the idea of people touching me, co-workers knew I wasn't the "hugging type". I carry all the tension in my shoulders and neck - that I knew. I am driving long distances several times a week, I worry about my son and I spend hours on the phone trying to work out details of his return and I feel the knots in my neck and shoulders growing by the minute. My migraines are hitting almost daily. It is all taking its toll.

So I took the plunge and with my best friend at my side (and giving me as much detail before hand as to what to expect) I went for a massage today.

It was glorious, it was absolutely wonderful. I think there was tension released today that I might have been holding on to since childhood. It didn't bother me at all to be touched and I loved every minute of it - even those painful moments where a knot was working out - the euphoria that was released after made it so worth it.

I smell like lemons and my arms feel 10 feet long. I could go for a nap but I must go pick up my youngest from camp. I've been thinking that an integral piece of my coping tool kit when C is home will have to be massages. And they are half the price of my therapy!

Lean on Me

2010-08-10T10:27:00.007-04:00

This past weekend my former work and the early intervention agency that played an important part in the adoptions and early development of both our boys, held a fundraiser walk/run. Those that know me are aware that while I keep my mind and spirit busy my physical body is often sedentary. Let's face it - I'm a couch potato through and through. I would love to say I was much more physically active before kids but that would be a lie. But lately A and I have been making a concerted effort to jump into life with both feet. To get up off the couch and away from the computer and to finally start crossing things off our ever growing to-do lists. Part of this impetus is, I believe, because while thrust into C's mental health crisis for several months we realized just how precious each "good" day is.

So C has been doing really well lately. He was coming home for the weekend. This walk was being held on the weekend. I felt compelled to give back to the agency that helped our family in so many ways and to do something as a family. I asked A what he thought and I was shocked when he promptly responded that he was in. I filled out the form online and clicked send. Then I felt sick to my stomach. Did I mention the walk was 5k AND I had signed all four of us up to do it together? What if C had a meltdown? What if physically I couldn't do it. But I pushed aside the negative thoughts and pushed on. We raised $205 in pledges in just 2 days and I hauled everyone out of bed Sunday to get them there for 8:30 a.m..

It was a beautiful day, sunny but breezy and without all the humidity we have had lately. I saw so many former co-workers and friends and I loved the feeling of being connected. The first event was a 100 metre dash for the kids. The boys lead the pack then J suddenly veered off course (it was a little confusing as to where to go) and C, worried about his brother, gave up his lead to go after his brother and get him back on course. Made my heart melt.

Then it was time for the walk. There were runners doing 5k and 10k and then walkers doing 5k. There were not a lot of children doing the walk - I guess their parents realized that was a long way. But I knew I couldn't leave C at the kids activities without us and I wanted our family to do this. Something inside me just couldn't let it go. Like it's some cheesy metaphor for this life we have been living - together we can accomplish anything. For some reason I really needed this and somehow A understood this. We started off at the back of the pack - right away C was complaining and saying he wasn't going to do it (even as we walked the trail into the forest part of the conservation area). The poor safety patrol guys on bikes that were trying to stick to the back of the pack couldn't actually ride their bikes we were going so slow. At approximately half way into the first km C balked and stopped walking. I told J and A to go on ahead and they did. There wasn't a soul behind us other than random people walking their dogs. C stood his ground as I slowly kept walking, not giving him the audience he so wanted. I could hear some not so choice language and could only hope he would eventually move and not enter a full on rage. I tried to keep my anxiety down. So what if he threw a fit - there was no one around to get hurt, no where to run (except the finish line) and I had my Blackberry if I needed help.

Eventually, with no real explanation as to why, C began moving again and he caught up to me. Quickly he became distracted by a friends little kids who no longer wanted to ride in the stroller so they had fallen behind as a family. C began to encourage the kids and this distracted him. Then we reached the 1km marker and he was ready to bolt - to have walked so far but only be at 1km was so discouraging for him. Then somebody mentioned door prizes at the finishing line and someone else told him that he could have as much water as he wanted from the water stations and that he could just throw his cup down on the ground as he walked. So we walked and dumped water on his head, carrying as many cups as we could, laughing at being able to - for once in his life - litter. Soon it was just he and I, climbing hills slowly but surely. When he began to falter I encouraged him to lean on me - let my energy help him. He grasped my shoulder and leaned heavily, holding onto my elbow with his other hand. Suddenly around the 3km I didn't even feel tired. I felt rejuvenated, energized. We could do this. We had lived through the past 6 months, we could do anything.

And we did, crossing the finish line in one hour and four minutes.

Next year we plan to do it in 50 minutes. Just don't tell C yet.

2010-08-06T10:08:00.002-04:00

I am supposed to be doing my hair (forget the makeup - its too hot) and heading out the door to drive 2 hours where my son is. I have been doing this drive at least twice a week (except when A is able to go but he works so I have taken this on) to bring our 11 year old son home on weekends while he is in a residential treatment centre. It is an awesome unit that he is on at a treatment centre that I wholeheartedly endorse. We have been receiving services from this place since C was 7 years old.

Usually I find a way to enjoy my drive - books on CD to listen to, music I LOVE on my MP3 player plugged into my van and at top volume, sometimes I just drive and think - relishing in the "me" time. But this is all losing its allure. I am tired. I am anxious to start a new chapter in our lives. I am also terrified beyond belief.

Our son is scheduled to be discharged August 13th.

I am not terrified of him. He has done wonderfully while away. We have watched him from afar regain his self esteem, begin to settle, blossom back in to the boy we know him to be. He has worked hard and some days have been harder than others. But he deserves so much to be home as soon as possible. No I am not terrified of him, I am terrified FOR him. And for me.

There - I said it. I am sooooo scared that after he comes home things will begin to fall apart. That he and I will spiral into that horrible horrible place that we were just a few months ago. I have good reason to fear this - we experienced it in April of this year after he went to residential on a crisis bed for a month. By the end of the month everyone on his treatment team was singing about how well he was doing and they couldn't believe how much he had improved. I was so happy to hear that. I had wanted so much to believe that what he had experienced was some sort of "blip" that would never again be repeated. (No one told me that - I had just wanted to believe it).

1 week after he came home he began raging. He began getting these "big ideas" and wanting, no NEEDING, to do strange things at all hours of the day. He slipped out of our reality and into his own. He started running from school again and he was only there for an hour. He began to speak of wanting to harm himself and he couldn't sit still and do anything. He was a whirling dervish and I went along for the ride. The more out of control he got, the more desperate and out of control we got, which then fueled his anxiety as he sensed we were no longer in control. It became a huge, horrible mess.

This time, the team, feel we have a better transition plan in place. I'm not so sure. I'm not convinced and it doesn't feel right (the place he is now FELT RIGHT no matter how hard it was to leave him there). Somehow I just don't get the same vibe from our local treatment centre he's scheduled to attend every weekday once he comes home. I try to tell myself to give them a chance and the truth is we have no other option at this time.

But today I procrastinate leaving and driving the two hours because today I meet with the doctors following an email I sent to our case manager. I wasn't upset but I wasn't happy. The team decided I obviously need more of my questions answered prior to a big discharge planning meeting we are having on Monday. So they cleared their schedules for this afternoon and I got the call yesterday offering for them to meet with me prior to my picking up C today. Its what I wanted and yet now I find myself stressing and trying to make sense of the jumbled thoughts and emotions i have going on so that I can ask clear and direct questions during our meeting.

As I am driving I will repeat this mantra ""I'm good enough, I'm smart enough, and Doggone It - I can ask the right questions!" Well, that and "coffee, must have coffee"

Sensory Stuff and a great Give-A-Way

2010-08-04T12:20:00.003-04:00

There is so much going on around our house and in our family. Throughout each day I compile in my mind all the Blog posts I want to do - but I never get to them. Even when I have a few minutes to sit down at the computer it all seems too much to make sense of it all let alone try to make a post. I do think I will be able to carve out time next week when J is at an all day Summer Camp and C is still not back home yet (such a long long story and I promise I will tell it - I am just mindful that much of the story is his to tell, not mine).

In the meantime, Natalie at My Yellow Apple blogged about this great contest and I wanted to let anyone who might be reading about it.When I jumped over to Soft to check out their giveaway I was amazed by all that I saw. How had I not heard of this company before??? How many hours had I agonized over trying to find C clothes and other accessories to fit his needs? I was able to find things here and there, like some VERY EXPENSIVE polyester clothing kids wear under their clothes when playing hockey etc (I later found it in the U.S. at Target for a 1/4 of the price but the damage to my bank account was already done). In his early years waistbands on pants were an issue and we were fortunate enough that many stores carried adjustable waist and what we termed in our house "Easy pants" - the pants that have a little clasp instead of a button (which was Fine motor issues rather than sensory). But then he got bigger and it was harder to find "easy pants" and he began to be bothered more by the texture of the clothes. He really loved the make of Mexx pants, they are soooo soft, but unless on sale they are expensive. For the last year he has been mainly wearing jogging pants - I HATE them. I want him to wear some nicer looking pants - and I usually just let my kids where what they want. I had hoped to order from this company but it looks like they stop one size lower in pants than what C wears. Sigh. But thats okay because they still have lots to offer our family and I'll keep you posted about how we like them. Of course I am also entering the Soft clothing contest in hopes of winning the giveaway. A mom always needs to have dreams!

You can enter too. Click on the company name in my post above or follow this link
http://www.softclothing.net/products/sale/giveaways

Better than Christmas . . .

2010-07-04T20:32:00.006-04:00

The bags are packed. A is loading up the van. I wander around the house with my list, trying to make sure we haven't forgotten anything. Baths are being had and clothes will get laid out to aid in our early morning rising and departure. The air in our home is electric, the excitement is palpable.

It's the eve before we leave for what could possibly be heaven on earth for C. Two weeks of unadulterated fun and freedom at Camp Winston. C told me earlier today that if given a choice between what was more exciting, Christmas Eve or the night before Camp he lit up and said "Camp of course, every time".

At Camp he is himself. He is embraced and loved and celebrated for his uniqueness. He is gently challenged to try new things and to try to see other people's views in things. But in all he is a boy at camp. A wonderful, curious, brave soul who is loved wholly and completely.

It has been the hardest year for all of us and I am not sure who in this house is the most excited about Camp tomorrow. It will be hard to let him go and yet as we drive away I know I will have a calm in my heart that it hasn't felt in a very long time.

Ceasefire

2010-06-29T08:49:00.002-04:00

Recently I sat with a Social worker who is fairly new to our family but who, thankfully, is not new to the world of adoption and attachment issues (its HIS specialty!) and who also "gets" kids like our C. The whirling dervish little guy, the toll it takes on our family and yet the depth of our love and devotion to him. This man, lets call him Dave, had commented before on my resiliency and we were talking about the level of parenting it takes for a kid like C. I told him that over the years I have very much felt I was in "in the trenches" in a parenting war. I even envision myself decked out in full army fatigues and gear. Some of this might have to do with C's obsession with the military (he wants to be a US Navy Seal when he grows up, despite the fact that we are Canadian) because I actually do not like anything to do with warfare. But that is how it has felt over the years - waging small and large battles. Winning some, losing some. Winning some but with HUGE costs that make you wonder afterward if it was worth it.

Usually I feel like I am waging the war on my own, defending the precious soul that is my son. Knowing that I have A in the background to swoop in with heavy guns only when absolutely necessary - afterall, someone in this family has to stay sane, go to work and take care of the mundane but necessary life things like banking and car repairs. Occasionally I get reinforcements in my war. Usually however they are new recruits without any fire power and it is still up to me to coordinate and lead and in the end to throw myself on the hand grenade should it come close to my boy. And man has it come close way too many times to count.

Eight years later I am tired and battered and worn out. Months ago C's mental health issues really ramped up and I began waving the white flag. Still the war waged around us. Seemed no one knew what the white flag was or perhaps I was waving it wrong but it went unacknowledged. I thought people not seeing the white flag was the worst, it wasn't. Even worse was when people finally began to see it for what it was but still failed to do anything about it. After all, I'm sure they thought, this was the infamous Military Mom who excels in Extreme Parenting - she'll get back up on her horse in a couple of days. I called for reinforcements, they didn't come. Finally I beat down doors and finally some people listened. They have closed ranks around C and they are keeping him safe and helping us all sort things through.

Through all this, this cease fire of sorts - I am trying to find myself again. I am trying to leave the military gear by the back door. I am trying to figure out how to go forward in a kinder, gentler way for all of us. I cannot keep up this level of intensity - it is just not possible. As I have begun to over function less it is wonderful to see family and friends start to step up with offers and real actions to help. We are trying to redefine what our family is and how it will work. It is all very hard work but I am so proud of all of us.

I am thankful for the ceasefire.

I think sometimes the enemy I waged war against the most during the eight year campaign was myself.

Markers, Poptarts and Meatloaf - a Modern Love Story

2010-06-10T16:23:00.008-04:00

In the Fall of 1992 I headed off to University all wide eyed and innocent and too young to drink. A few months later I turned 19 and through my much older room mates brother I met a man who I thought was a jerk with a weird last name. I won't get into too much of the details as to why I thought he was a jerk but I will say that it was being fuelled by tales told by my room mate, who had her own version of reality that in the end we all realized was DRASTICALLY different than everyone elses.

Despite the fact that my room mate kept telling me what a creep, weirdo and jerk this "guy with the weird last name" was, she seemed to be actively encouraging him to hang around our totally illegal dungeon basement apartment. She had a boyfriend (living in the U.S.) and I was naive enough to wonder why he would hang around someone who wasn't "available". After a while she seemed to lose interest in "guy with the weird last name" but he still hung around on occassion and he began to joke around with me as I sat, cross legged in my chair, hair high in a pony tail a top my head, eagerly highlighting practically every line in my textbook as I crammed for exams. He laughed and mocked my study habits and note taking. He encouraged me to "relax" and do the "bare minimum". Somewhere along the line I was mortified when he walked in to find me writing a moronically childish letter to a friend as I was using a different coloured marker for every letter of every word (what - I was bored!). I tried to act all nonchalant and flirty and deflect my embarrassment and somehow that turned into me offering to write on him with the markers. Because somehow that's a turn on right???? Don't ask, I don't know - I was trying to be something other than the uncomfortable 19 year old inexperienced book worm that I was. Thankfully he declined on that occasion and my markers remained capped.

A few weeks went by and we hadn't seen "guy with the weird last name" around. I asked my room mate and she acted indifferent. A few days later she walked by my room and threw a paper at me, "Here's his name and address if you want to get in touch with him". I carried that paper around a few days. What if he didn't even know who I was? I thought about calling him but I didn't have the nerve. So I did what I did best I wrote him a letter and signed it "marker fetish woman". Yes, I was that bad and that corny. And he answered. He wrote me first and I wrote back and then he called me and we talked for hours. Soon we arranged to meet. Our first "date" was in the middle of the day. I have no recollection how that came to be. We met up in a shopping mall. I had a car, he didn't. We hopped in my car and as we drove to our first destination he nonchalantly opened my glove box. There was nothing in there but a box of chocolate Pop Tarts. I think he knew he loved me then. What person drives around with pop tarts in their glove box? That first date lasted 26 hours (NO it's not what you think - I was a good girl and he was a perfect gentlemen and he was having trouble getting over the fact that I was only 19 and he was GASP 25).

Within 4 months though he had proposed and I said yes and we moved in together and then moved 4 hours away so he could go to grad school. We planned our wedding and we both went to school and I worked full time as well. And then in 1995 I graduated with my Bachelors degree in Psychology and then on June 10, 1995 I married my best friend. I was only 21 years old. I had no concept of what forever meant. But that's okay because it was and still is the best decision I ever made. The days leading up to our big day were stressful and not without problems (mix ups at the hotel, my mother accidentally overdosing on her medication and needing to go to the hospital during our rehearsal - THANKS PAM for staying with my mom!!!!)None of it mattered in the end. The day was beautiful. It didn't rain like they predicted. We got wonderful pictures, the ceremony was great (okay a little long but I did give it some comical moments including putting the ring on A's wrong hand). Later that night at the reception, surrounded by our friends and family in the dining hall A and I spontaneously decided to go up to our room and change into shorts and we came back down and the DJ played Meatloafs Paradise By the Dashboard Light and suddenly we were surrounded by a group of friends and family, A and I singing the words to each other as though we had rehearsed it. We were having such a great time that guests from the wedding next door crashed our wedding. That moment plays in my head now 15 years later and it makes me smile so hard my face hurts.

We were 21 and 27, our whole lives ahead of us. Lots of wonder, lots of heartache ahead. We would face it together and that was all that mattered then and that is all that matters now. Well that and that I no longer think he has a weird last name.

15 wonderful years. I love you sweetie. Thanks for taking a chance on the young girl with the markers and the Pop Tarts.

Wordless Wednesday - When Your Mom is At Her Wits End

2010-06-09T17:20:00.002-04:00

State of Emergency

2010-06-08T09:49:00.007-04:00

On Saturday I drove J out to National Park an hour or so from our home for his first ever Beaver Camp Out for the end of year Troop Celebration. It had taken some convincing to get him to the point where he was comfortable with staying overnight and even when I drove away that morning I knew there was a chance I might get a late night call to come get him, and that would have been ok.

But that call never came.

During the night I vaguely recall hearing some loud thunder. In the early morning A and I quietly conversed in bed, me hoping out loud that J slept through the storm. I was thankful that the Beavers and Cubs of the Scouting troop were in the Bunk Houses rather than tents. I got up and turned on the radio enjoying the easygoing morning where C slept in while I made pancakes for everyone before I had to get ready for the long drive to go pick up J.

I had a few minutes before I had to jump in the shower so I sat down to the computer to check blogs and my local mom forum. And I saw it - State of Emergency Declared in the town neighbouring the Provincial Park. I swear all the air was sucked out of the room I was in. I quickly clicked on the online local paper and there were pictures of mass destruction from the early morning storm that had hit the town. Roads were closed. Power was down. I walked upstairs to where A was. I could barely breath as I tried to tell him the news. I tried to call the Provincial Park. No answer. I tried to call the Leaders cell numbers, no answer.

We have very good friends, lets call them Honey and Jake, who live out in that area and though it was still early I called them. Luckily they had power and their phones were working. She answered and told me Jake was up and already down by the water, the hardest hit area. I told her where J was and listened as the air also left her lungs and Honey worked to not panic as well. J is the son Honey and Jake never had and I whole heartedly share him with them (I will tell you more of their story another time). I asked Honey to call Jake and ask him to see if he could get to J and bring him to their house. All I could think of was to make sure my boy was safe and I wasn't even sure I would be able to get to the park with all the road closures. Honey agreed they would try and I proceeded to get ready to get in my van to at least try to get to their house to be that much closer to J.

As I threw on my clothes all I could do was pray that my boy was first and foremost unhurt and that second he was not terrified. It was horrible knowing I was so far away and not able to get to him. I bolted out the front door, leaving A and a sleeping C behind and was just leaping into the van when A came running out the front door - phone in hand saying it was Honey on the phone. She wanted me to know that Jake had been able to reach the park and had spoken with the Park Supervisor. Everyone was perfectly fine.
He could not get J though. There were trees and powerlines down. They were working hard to clear it and would hopefully have the path cleared by the time the parents would get there for 11 a.m. There was nothing to do but sit and wait a little while longer. I thanked Honey, hung up, and fell onto the couch. We agreed we would wait a while longer then head out as a family as it might take longer to make it around all the detours and blockades and I didn't think I had the strength after that turmoil to do it myself.

When we got to the park shortly before 11 we had to wait and we chatted with the Park Staff. The Scout Troop had been the only overnight guests in the park but thankfully the leaders had figured out around 2:15 a.m. that the weather had decidedly taken a turn for the worst and got all the kids that were in tents out and into the mess hall. It was later determined that a Tornado hit the neighbouring town around 2:45 a.m. The Beavers of the group slept through the ENTIRE event. When they woke up in the morning all they cared about was that they couldn't turn on the lights. The leaders themselves didn't even know the extent of the damage in the town or that a natural disaster or state of emergency had been declared. The crews at the park had to work from the early morning hours right up to our arrival at 11 a.m. just to clear a path so we could go in and retrieve our children. While the crews worked our kids ate breakfast and played soccer. While the parents were scared out of their wits with worry the kids were laughing and playing. And I wouldn't have wanted it any other way. I am so thankful to those volunteer leaders for keeping their calm and for being prepared.

Needless to say - J received a lot of hugs that day and the days since then. Yesterday I picked him up early from school and we just went and did fun stuff. Hanging out just the two of us as I try not to think too much about "what if . . ." but trying instead to to just be thankful for what is.

Greased Lightbox

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Wordless Wednesday - When Life Was Simple

2010-06-02T20:59:00.003-04:00

Goals

2010-06-01T08:42:00.009-04:00

I was in a meeting yesterday with C's wonderful team at CPRI (well, some of them. His team is too big to probably fit in a room at this point) and we were discussing what the wording of the social work goal would be on the treatment plan for our family. I was really struggling to pinpoint the goal because it all is just so overwhelming. Finally, to be helpful, Dave the social worker said "Well, it's like C is in the drivers seat. It would be nice to get you out of the passenger seat and back into the drivers seat".

I leaned forward, exhaustion and desperation coursing through my body and proclaimed "Dave, C might be driving but I am outside the car, draped across the hood, hanging on to the windshield for dear life. I'd settle at this point for getting off the windshield."

Wordless Wednesday - What My 6 year old Brought Home For Me One Day

2010-05-12T17:13:00.002-04:00

with a little help (and money) from his Dad.

Lessons from my Mother

2010-05-05T08:40:00.004-04:00

Growing up I knew without a doubt that my mother loved me. I also knew that my mother was easily agitated, had high anxiety and suffered from debilitating migraines that could last days, even weeks. I learned early on how to take care of her, to try to keep stress to a minimum. I can't say my brother and I always succeeded, we were children after all, but I think I did a fair amount of care giving at a very young age.

It was difficult for my mother to go into social situations. She would worry obsessively in the days leading up to any event, even those she genuinely was excited to attend (such as a family gathering). Once there (if she didn't get sidetracked beforehand with a migraine from the stress) she would settle herself in and talk and talk and talk and talk. To an outsider it would look as though she was an extrovert, quite comfortable in her surroundings. But if you were to listen in you would overhear her saying things that others wouldn't have said. Sharing deep personal information with virtual strangers. Making a blunt observation about someone - a comment that others might think but would not have uttered. We joked often about her not having a filter between her brain and mouth.

She also had strong likes and dislikes. She HATED the colour green. She HATED the coffee from McDonald's. Don't even get her started on Rich's creamer. Crowds were overwhelming for her so she stayed home many times while my dad would take us to the Toronto Santa Claus parade and other exhausting but exciting venues as children.

It wasn't until I became a mother to a son who exhibited many of the same characteristics that I began to see my mother in a new light. I began to understand and appreciate the lengths my mother went to try to overcome the challenges she faced in her life. It was important to her that I not feel as socially awkward and isolated as she had as a child. She signed me up for Brownies and when I began to balk at going, getting migraines from working myself up with worry, she put aside her own anxieties and became a Brownie leader. Of course I didn't understand then how hard that must have been for her. To this day, those Girl Guide outings and camps are some of my best memories. I became so comfortable going that I moved on to Guides and my mother was able to fade into the distance.

During first grade I began to experience stomach aches and frequent headaches. My parents took me to the doctor, had my eyes checked and it was determined that these symptoms were due to stress. I was stressed - I remember being worried all the time that I was doing something wrong or was going to get in to trouble. I had this free floating anxiety for much of my life - not really being able to pinpoint what I was worried about. I told my mother I was afraid of failing. She spoke with my teacher and nothing could have been further from the truth but through that discussion it was decided it might help me if my mother had more of a presence at the school. So once again my mother offered to volunteer and she began to help out in the school library. It must have helped having her close by because all of the "symptoms" began to fade away.

How hard that must have been for my mother to put herself out there. But how devoted she was to me. That makes me tear up today. We are pretty sure, having gone through the assessment process for C that my mother likely has Asperger's as well. To think that she repeatedly pushed through her anxiety and other difficulties in her attempts to help me is an amazing testament to her devotion. I know she often berates herself for not being a better mother. But when I am faced with the most difficult times for C I think back to the sacrifices my mother made for me. When I feel like I cannot possibly fight one more fight for C I am bolstered by all that my mother did for me. He deserves no less.

Happy Gotcha Day - 8 Amazing Years

2010-05-02T00:01:00.002-04:00

Dear Sweet Boy

8 years ago we walked into Nana & Papa's house filled with trepidation,excitement, hope and probably some pure terror mixed in there. We had spent many hours talking about you, listening to others talk about you, reading about you and staring at pictures. Nothing could have prepared us for that moment when you stepped out of the shadows and walked toward us - your hands eagerly presenting us with a picture you had painted just that morning. You were the one to take the first step that day and we just followed your lead. Soaking up whatever you were prepared to share with us that day and the many days following.

That is how these 8 years have come to pass - we follow your lead. We are in awe of the young man you are becoming. We never could have guessed where the next 8 years would have taken us . . . but then who can in life?

I know life isn't easy for you . . . I often wish I could lighten the load that you have been chosen to bear. I'd like to think that sometimes I can - when we walk this path together. Sometimes I piggy back you but you, my son, are always leading the way.

I am in awe of you and I thank God everyday for allowing me the honour of being your mom. I am a better person and my life is so much fuller and rewarding with you in it. You have taught me so much about perseverance, forgiveness, starting new each day and that control is often an illusion. You have taught me that it doesn't matter what strangers think - surrounding yourself with people who light up when you enter a room - that's what life is all about. You have brought so much laughter and joy and wide eyed innocence to our family.

I have said it before and I will say it again. You, my beautiful boy, are my hero.

Wordless Wednesday

2010-04-28T21:55:00.014-04:00

I have been filling out a lot of forms about C the past several months - camp, residential placement, respite, school and so on. Sometimes I struggle, amidst the exhaustion, to describe his likes/interests. While trying to organize some pictures today I came across these pics that C had taken himself. A picture is worth a thousand words for sure. These show at least some of his main interests. He had pics of family and friends as well but I am not including those. I also had one of his most beloved possession - his GPS but then I realized it clearly showed coordinates on it! lol I guess this isn't really "wordless" is it?

What if?

2010-04-27T10:34:00.002-04:00

What if . . .

your son was spiraling into a dark place

where you could not reach him

and he called out for you

his screams and cries cutting

through to your heart

threatening to make it explode

What if . . .

the only people who could "help"

did not see the wonderfulness that is your son

could not understand your fear and desperation

did not share your hope and belief in your son

and were willing to let him sink deeper and deeper

What if . . .

you were too exhausted

and confused

and overwhelmed

to fight the way you have fought

in the past

What if . . .

you didn't know how to help him

didn't know what was wrong

or what to do

and you don't even know

what you are supposed

to be fighting for

What if . . .

the deepest darkest fear

that you don't want to admit

to anyone,

least of all yourself

is that this is just the start

of you losing your son

and that one day

worse than him screaming out

for you to help him

will be

when the screaming stops

Flying High, if briefly - Wordless Wednesday

2010-04-21T10:18:00.005-04:00

Honest Scrap Award

2010-04-14T18:49:00.007-04:00

A long time friend Pam at Easily Amused tagged me for this award, it's been a while since I had one bestowed on me. The Honest Scrap Award Rules say that I must:

1. Brag about the award.
2. Include the name of the blogger who gave you the award and link back to that blogger.
3. Choose a selection of blogs that you find brilliant in honest content.
4. Show their names and links and leave a comment informing them that they were prized with this award.
5. List at least ten honest things about yourself.

Okay, 10 honest things about myself. Hmmmmmmmm. Well I am too exhausted and stressed to be deep and serious so here are some random honest things about me:

1. I don't "try" the grapes at the grocery store. EVER. That's stealing!!!

2. I LOVE cold apple pie. It calls to me. When I am stressed, that is what I reach for. I could eat the whole pie.

3. If I see someone bend back the spine of a book or fold down the corner or anything that "damages" it I seriously have heart palpations. Actually that goes for scrapbooking paper as well. Just ask my friends about what happened at Megascrap Meet 2008.

4. When I was 3 I ate a tub of Margarine. Yes, ALL of it. As my mother has told me many times "and it was a brand new tub too!". Don't ask me why I did it - maybe it was because I was the slowest eater in the world and the family left me at the table by myself and I was bored . . . . Don't worry, it didn't stay down long. Ewwwwww!

5. I was a tomboy as a kid. I was great at climbing trees, ran around without a shirt until I was 8 whenever I could, caught toads and almost always won in a game of dodge ball.

6. Who am I kidding? That pie referenced in #2. Yah, I have eaten a whole one. Too many times to count in my lifetime. Sigh. Hanging head in shame.

7. I have never ridden in a limo

8. I REALLY want to learn to drive stick. Then I want to learn to drive a big rig, a race car and a motorcycle. Not necessarily in that order. For real, no joke.

9. My son recently started to compulsively listen to Justin Bieber - the kid weird's me out (Bieber, not my son). He sounds like a girl and he looks like he is 12 but he's talking about being in love with this girl. And yet I find myself singing his songs all day and "suggesting" my son bring the CD along with us in the car, cause it helps HIM of course.

10. One time when I was a Brownie I REALLY needed to use the bathroom and the leader wouldn't let me because we were going to do the closing song or ceremony or whatever it was called. I was the kind of kid that when I had to go, I HAD to go RIGHT away. But I was also the kind of kid that never wanted to make trouble and would never disobey. So I stood there, legs clenched, willing myself not to pee. Didn't work. I peed and it filled my shoe (ewwwww). But no one noticed - I had on dark tights but still, how did no one notice??? I had almost left the gym when the leader yelled for us to freeze and she demanded to know who had spilled water on the floor. Earlier in the evening a bunch of girls had been spitting water at each other after drinking from the fountain. Included in those girls were two that constantly made my life a misery. Because no one confessed it was assumed they were the culprits and they were made to clean it up. Double EWWWWW. I am SOOOOO SORRY! I still feel bad about that!

There so 10 honest things that you now probably wish you didn't know about me :-)

And now I am supposed to bestow this award on other bloggers:

1. Longtime childhood friend and fellow blogger MundaneMomma at Moments of Clarity

2. Mommy Dearest at Quirk Factor. She might kick my ass for loading this on her but I REALLY want to see what she writes.

Happy Blogging People

Thankfulness

2010-04-13T09:56:00.004-04:00

C and I and one of our Respite Workers headed to CPRI yesterday. Child and Parent Resource Institute (CPRI) is the tertiary children and adolescent mental health centre for our Region. The Ministry designated CPRI as a "tertiary care centre" which means a) families are only supposed to go there for service when they have exhausted all means of care in their home community and (b) service can be intense but is supposed to be brief and then you are "transitioned" back to your home community service provider. I LOVE CPRI.

I have LOVED it and all the people who work there ever since I first spoke to an intake worker there on the phone in 2004. For the last year or two I have been thinking, at some point I will inevitably meet someone who works there who I don't click with, or who doesn't click with C or who is inept, or even that they will be less than stellar.

Hasn't happened

Don't get me wrong. We have had some very dedicated and skilled professionals in our own city. The difficulty is that we also have "professionals" who still believe that children "like mine" ultimately will NEED to spend a great deal of time in restraints and isolation and that I am in denial about what a lost cause my dear son truly is. They think I am naive and they shake their heads and give me this piteous look (that makes me want to slap them, but I don't, aren't you proud). We also don't have the funding in our community (who does) to provide ongoing training and supports and resources. Many of our providers here are behind the times when it comes to things like Tourette's, OCD, Attachment Disorders - oh, wait - all those diagnosis that C happens to have. I have hope that over time methods like Collaborative Problem Solving and Therapeutic Crisis Intervention will become the norm rather than the exception in our area. I believe that one day children like mine will be seen as having Neurological deficits rather than wilful misbehaviour.

But until that day comes, we rely on our services through CPRI. When we go to CPRI we feel accepted. We feel supported. We feel empowered and informed and involved. We feel HEARD. We feel validated. We know that they care and they understand. Even during those times where there is nothing tangible someone from CPRI can actually do at that moment for us - they listen, they empathise. And the last few months, when I hit rock bottom right along with my precious boy they carried some of the burden and most important of all -

they held out hope

they didn't promise quick fixes or even answers. They merely promised to care for my boy for a short time and to not abandon us while we worked through it. They offered to walk beside us, no matter where the road lead. They went on to value him and validate him and to strive to understand and connect with him. They treated him as a capable individual. They beamed when he entered a room and they saw AND celebrated his successes.

Most important to him was that they listened to him and they believed in him. Also that when he was feeling his most vulnerable and out of control they kept him safe, all the while maintaining his dignity.

We are so grateful for CPRI and all that they do. We are thankful that when it seems we have exhausted all avenues they always manage to come up with new plans to offer us - beacons of hope on those foggy hopeless days.

This one post cannot even convey how much they have done for our family.

Thank you CPRI

9 Things I Want You to Know

2010-04-10T11:46:00.003-04:00

1. I believe wholeheartedly in inclusion. I ALWAYS have, even before I knew what that word meant. Long before I met my sons. We all belong. And throwing children into a classroom without proper supports and resources IS NOT inclusion. That's setting a child up for failure and heartache and the adults who create those environments and experiences should be ashamed.

2.Yes I truly believe in what Ross Greene says about our children. Children do better if they can. I believe in Collaborative Problem Solving (CPS) and NO I don't think that being stricter with my kid or "teaching him a lesson" in a punitive way will help him to reach his full potential. I do not believe "kids like mine" need to live in "bootcamp settings" or that they need to be regularly restrained or put in isolation to learn to follow rules.

3. Just because of what I said in #2, don't for a second believe that means there are no rules in our house or structure or routine or consequences. We have ALL of those, in abundance. We just try to be clear with ourselves and our boys about the rules and the reasons for them.

4. My husband and I are the lucky ones. I get what you are trying to say when you tell me our boys are "lucky to have us" but do people say that to you about your biological children???? And really, you think my BOYS are lucky? WE are the lucky ones. We are so blessed to be given the responsibility to raise these two young men. Saying it the other way devalues our children.

5. If you keep telling me how lucky my boys are I might one day have to hit you. I'm not a physical person. We have a "hands off policy" just like the school. But we all have our limits and I'm just declaring mine.

6. I don't want my children to EVER feel beholden to us because we "saved" them. We wanted to be parents, we were being selfish. We had no illusions of "saving" anyone. If anything, my boys have saved me - over and over again. They give me purpose, they challenge my view on life, they have helped me to grow and change more over the past eight years than I ever would have without them.

7. We ARE their REAL parents. We didn't create them and I didn't give birth to them. But we are their PARENTS for now and forever.

8. I have not nor will I ever try to be a PERFECT parent. There is no such thing. So if I say I need help with something or something is going really bad - BELIEVE me. I am NOT just being too hard on myself.

9. If I had it to do all over again - marriage, fertility treatments, adoption - I would do it all in a heartbeat. And if there was a chance that changing even one minute detail would change anything about the wonderful people in my life - I wouldn't make that change.

Pure Gold Amidst the Crap!

2010-04-06T11:14:00.006-04:00

These last few months, WOWZA! They have been the hardest ever. I cannot even begin to try to recount what our family has been through (though I will try at some point, promise). For now, C is spending lots of time with me at home (aka he's not in school) and I am adjusting to being a full time stay at home mom (aka I realized that people actually expect me to do HOUSEWORK - UGH).

Anyhow, there was a lot of drama last week. I was raging and crushed all at once. You would be so proud of how I held myself together and refocused on the family. What good does ruminating and seething and agonizing do if it takes away from the here and now with my precious family?

So we got celebrated Easter, got out and enjoyed the beautiful weather, had lots of chocolate, saw How to Tame Your Dragon (with only 6 other people in the theatre, YEAH)

and I taught my baby how to ride a two wheeler (Actually he taught himself. I had geared up for lots of falls and tears - both his and mine - but he literally took off the first try and left me in his dust).

Oh and I worked on that "cleaning the house" part of my job description by tackling the linen closet. I didn't get a before pic but let me assure you it was not pretty. Not sure how long it will stay like this but my dear sweet husband was mighty happy.

Then this morning we were having a craptastic start to the day. C was in a foul mood, having difficulty regulating himself but yet we ventured to the library. On the way home (me focusing on taking deep breaths, at least the calming techniques are useful to someone in our family) C discovered his small treasure box between the front seats that he had forgotten about. He rooted around in it and discovered there was one last "Golden Treasure" (aka Werthers Original Candy). He went on and on about how excited he was that there was one left and how amazing it was that he found it and how looking forward to the "sweet goodness" in his mouth.

Then he paused, put his hand out and offered "Do you want it mom?"

Awwwwwwwww.

And that people is my Pure Gold amidst the Crap that is my life of late.

Dear Crisis Social Worker Part 2

2010-03-03T08:35:00.002-05:00

Dear Most Unhelpful "Professional"

See my previous post and you will see that I TRIED very hard to focus on the positive of our interactions with you. Well, I can no longer pretend. You are very unhelpful and in fact I actually think you are incompetent. As soon as I have my son stabilized I will be back to finish our discussion, with your superiors. You can only blame so much on the system. I get that the system is underfunded and there are a lack of resources - BUT if YOU are ALL that the system can give us - quite frankly I will take nothing. That's all you gave us - NOTHING.

And yes I called the Ministry. And no I didn't give your name - at least not yet.

Have a great day.

Dear Crisis Social Worker

2010-02-13T19:16:00.004-05:00

Dear Crisis Social Worker

First, I want to say thank you for being so kind and understanding with my son when I brought him to the Emergency room. I appreciate that you saw his anxiety and despair for what it was and took him seriously.

I also want to thank you for trying to empathize with me and how exhausted and "burnt out" I was that day. I know your heart was in the right place, please know that.

However . . .

The last thing I needed you to tell me was that I know more about my son and all of his conditions than the rest of you and all your co-workers "put together". Seriously? Is that supposed to be some source of comfort to me? Or were you trying to plunge me deeper and darker into despair?

Also, you should know that I BELIEVE in inclusion. I believe a "child like mine" CAN and DOES belong in a "regular" school and in a "regular" classroom. Being told, while I am despondent about my 11 year old who is acting manic and saying he wants to kill himself, that I need to start making plans to basically institutionalize him in the next couple of years - how exactly is that helpful to me or him????? And why on earth would you say those things while he was 2 feet away from you?

But thank you - seriously. One thing that I have learned in all this is that it is hard for me to not have someone to be mad at. Dealing with this latest crisis and having my sons whole team all on the same page and in agreement with everything but no one being able to do anything - well, that was agonizing. When I have someone to rage against it almost makes it easier. It helps me to focus on something than just the pain, worry and despair. So inadvertently your words lifted me up, renewed my energy, made me sit up and say "no way in hell is that going to be my kids life".

Your words have made me determined, once my son has passed this crisis, to make sure that you eat your words.

Thank you.

In Search of Spectacular Destinations

2010-02-05T06:47:00.003-05:00

I haven't been blogging even though I very much want to. There is so much going on and I feel a pull to write about it. But it's all so much, so big that I never know where to start and I never know what is mine to share and what is my sons. The truth is he is in crisis and the last two weeks have been the hardest time for all of us but especially him. He fell apart and had to be hospitalized and now we begin to try to help him rebuild everything.

I've mentioned many times the ups and downs with our school over the years but even when we don't see eye to eye I know they care deeply about our son and are committed to him 100%. We very much appreciate them and all of their efforts. With C's latest situation the school bore the brunt of the fall out the days leading up to the hospitalization. All the staff rallied, they did their absolute best. They cried for our boy and agonized over how to help, how to keep him safe.

Yesterday we had a school meeting. EVERYONE from his school team was there for almost 2 hours. Well, his teacher had to leave after 1.5 hours because we suddenly realized how much time had passed and there was no one to cover his class. During that meeting there was constant dialogue around how do we support C. What can we do to make him successful? What's reasonable to expect and how do we go about it? The Psychologist we now have from our children's centre was phenomenal and not once, NOT ONCE, did anyone around the table even begin to balk at the idea of C returning to school. In my field of work I have been to hundreds of school meetings. Many have become heated and adversarial over far less than what we were dealing with yesterday. Most schools, I almost want to say every other school, would have at least once said "but surely you can't expect us to be able manage him here???". But they didn't. Instead they brainstormed and eagerly sought possible solutions. They wondered aloud how to get me more support at home as he will not be able to manage more than a few minutes of school a day for the next while. They agreed to strategies that the Psychologist and I had thought were doubtful they would agree to. At one point there was a discussion of a pop up tent for C to use when he needed to get away. I tried not to looked visibly shocked when there was unanimous agreement on the strategy. Then I wept openly when after I vowed to go out that very night and pick one up (all the while trying to figure out how I could really make that happen with all that was on my plate) and the Acting Principal (this poor man who is filling in for a few weeks and probably never expected to deal with this) piped in with "I will go tonight and get one - you have enough to do - let us help you".

There were some horribly difficult things discussed yesterday. Possibilities of what is happening to our son and what it could mean were briefly mentioned and left hanging in the air. No one wanting to discuss or speculate further. There was a lot of hope in the room but worry for him as well. As though we were all acknowledging the hard road that lies ahead and praying that for once the road might not be the hardest one but perhaps a long, windy one with a spectacular destination at the end.

The Hard Questions

2010-01-26T14:55:00.003-05:00

We have been having a rough time around here lately. To be truthful C is in crisis and we are doing our best to rally the troops and support him. On the weekend, at the height of the crisis, C needed to be taken to the hospital to see a crisis worker to evaluate whether he needed to be admitted. Unfortunately J could not be sheltered from from all of what unfolded and he was understandably concerned about his brother.

Today, while getting ready for school J suddenly asked me once again why C had to go to the hospital and I tried to explain yet again in 6 year old terms. He put his hand up inf front of me, to stop me and said "Ok, got it". The he took a deep breath.

"I guess" he said to me, that quiet serious voice again "I guess I want to know - why did God make C like this? Why did he make life so hard for him?"

Uh . . . wow. I was SO not ready for that. I'm afraid I didn't have any real good answers for him as I fought back tears.

Mom Secrets

2010-01-09T09:52:00.004-05:00

I have a newsflash for all of you

I am not

and

never will be

nor do I want to be

Super Mom

Seriously, I see friends, co-workers, strangers running around trying to be it all. We have to be a cook, a maid, a chauffeur, a nurse, a personal shopper and on and on. Some of us work outside the home, some of us are stay at home - some do a whole lot of both.

But I think I can say with a level of certainty that we all have some things in common no matter our circumstances and choices - we are good, well intentioned people with expectations of ourselves that are WAY TOO HIGH.

I can't jump over the bar anymore - can you?

So here I profess

- right now my youngest is having a bath for the first time in about five days (sigh)
- there are baskets of laundry waiting to be folded all over my house
- I cannot (honestly - I am not joking here) remember the last time I washed my kitchen floor
- my youngest broke his glasses about 2 months ago, I haven't gotten them fixed yet, they are rolling around in my van somewhere while he wears his back up (old prescription) pair about the 3 times a week I remember to tell him to put them on.

There - I have proclaimed some of my "mom secrets". It feels liberating. I am setting the bar low for myself. Not everything is going to get done. I am human. Not everything CAN get done. And you know what???? I am surprisingly okay with it all.

My husband on the other hand, might not be so okay with it all.

How about you - where's your bar set?