Therefore I Share

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"

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

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

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

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

It is the 27th AGAIN!!!

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

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

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 ;-)

Greased Lightbox

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Gets Me Everytime

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

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

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

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

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

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

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 . . .

. . . 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

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

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

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

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

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

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

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?

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

"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

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

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

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

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)

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

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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