Sunday, August 29, 2010

Family, Funnel Cakes and Ferris Wheels

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.

Wednesday, August 25, 2010


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.

Tuesday, August 24, 2010

Today I Almost Fell Off My Chair

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.

Saturday, August 21, 2010

In Case We Were to Ever Forget

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.

Monday, August 16, 2010

Bill of Rights

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.

Friday, August 13, 2010

Collaborators not Prison Guards

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.

Wednesday, August 11, 2010

When Life Gives you Lemons

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!

Tuesday, August 10, 2010

Lean on Me

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.

Friday, August 06, 2010

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"

Wednesday, August 04, 2010

Sensory Stuff and a great Give-A-Way

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