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.

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!

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.

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

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 . . .

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

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

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

State of Emergency

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.

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Wordless Wednesday - When Life Was Simple

Goals

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

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

Lessons from my Mother

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

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

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?

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

Honest Scrap Award

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

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

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!

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

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

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

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

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

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?

Now We Are Six

Oh how my heart aches and bursts with pride today. My baby boy is turning 6 years old. While I am happy to see the tail end of 2009, I am weepy about my little one being one year older. It seems like only yesterday that this was the face that greeted us on our first visit to the foster home to welcome him into our forever family:



And now, Sweet J, you have grown beyond my hopes and dreams. You are a sweet, sensitive, boisterous and spirited little man. Your body and your mind are constantly on the go. You ask the most thought provoking questions and you charm everyone you meet. I am so proud to be your mom.

If I could make a wish for you as you blow out the candles on your cake - it would be this: Never lose your ability to question, embrace your empathy and sensitivity but also remember the worlds troubles do not belong all on your shoulders. It's okay to be silly and carefree at times - life will be serious enough when you are grown.

And from my one of my favourite books as a child, Now We Are Six by A.A. Milne

When I was one,
I had just begun.
When I was two,
I was nearly new.
When I was three,
I was hardly me.
When I was four,
I was not much more.
When I was five,
I was just alive.
But now I am six,
I'm as clever as clever.
So I think I'll be six
now and forever.

As your mom, I'm okay if you want to be six now and forever! But know even when you are "really big" at ages 26, 36, 46 and on an on there is always room in my arms for you.

Happy sixth birthday, light of my life!

Love, Mom

Our Christmas in Pictures

From our family to yours a very Merry Christmas!

The Long Hard Road

Some months ago I was reconnecting with a high school friend on facebook, we were catching up on where our lives had taken us and how far it was from who we were in high school. When I described how I had felt back then (out of place, overwhelmingly shy and hopeless and unsure - but weren't we all?) he told me he found that hard to believe. That I always seemed so sure of myself, so intelligent, so "together". He commented that guys had been intimidated by me. Hunh. . .really . . . wow. I honestly had no idea. And it really got me to thinking about who I feel I am on the inside and how people view me on the outside.

I have always been able to write from the heart but put me face to face with someone and I have no idea how to express in words how I am thinking and feeling. I often relay deeply painful information in a matter of fact, even nonchalant manner. I don't mean to - it just comes out that way.

Sometimes when I think back to who I was, as a mom and advocate, in 2004 I cringe. Don't get me wrong, I am proud of the the fight I put up - the stamina that I showed in trying to get people to listen and to help us to help our son. But I cringe inside, remembering how raw it all was. How voracious I must have been. I did not have much practice speaking up for myself let alone for others - but here was my son, who needed a champion. If I didn't do it then who would? So like many other moms I got on my battle gear and prepared to fight to the death.

I was lucky, I guess, that I am not a warrior at heart. I prefer peaceful solutions and am actually a good mediator. There were times where I felt backed into a corner, where I felt scared for my son and for his future, where i felt hopeless and helpless and that is when I fought. When I dealt with the mental health agency in our town that provides service to children from 6 years to 19 years old and the first social worker we saw told me repeatedly they had nothing to offer us. When my son in the first grade was being suspended and every day after school was like a battle just to walk home - 3 doors down, she told me that we weren't in enough crisis. I fought her then, getting her to keep our file open, hoping somehow someone would know how to help us.

When our son began to do movements over and over for no known reason and then began with vocal tics so strong that he couldn't get words out of his throat and he would look pleadingly with his eyes wide begging me to help him - I yelled loud then and demanded to see someone, anyone to help us. The Social worker listened then and we saw a Psychiatrist and she diagnosed Tourette's syndrome and I felt relieved and sad all at once. THEN the social worker discharged us - no intervention, no assistance, just the diagnosis and a pat on the back and we were on our way.

From there things continued to snowball. My son constantly begged me to come close then pushed me away. He continued to struggle at school and get labelled as a "behaviour problem". He got kicked out of every after school activity and childcare that we tried. I told people, "this is NOT just Tourette's, this is something else". I banged on doors and hounded everyone I could think of. I cried and begged people I had known for years, having worked in early intervention since graduating university.I felt dizzy from trying to navigate the "system". We were stuck in a void. He didn't qualify for developmental services and he wasn't "bad" enough to qualify for the paltry mental health services available in our community.

I began to feel dizzy and sick to my stomach every time my cell phone rang. The only time it rang was if it was the school. And they called a lot. I felt like a horrible failure as a mother. I kept my head bent low when I went to pick up my son from school and willed for no one to say "Oh, Mrs. S . . . do you have a minute?". that was code for . . . "your kid has done something (or lots of things)and we want to torture you with every last horrific detail".

But over time, I learned how to hold my head high. We got more and more answers. We had more people on our team instead of it being "us" versus "them". We qualified for mental health respite dollars and years later for Special services at home. He began to stay in school more and the calls from school came with less frequency and less intensity. We had a new social worker assigned to our family and though I battled hard against him and all I thought he stood for,he stood by us, by me. He listened to my rants and ravings. He got to know my son, the hard way, through years of living and fighting in the trenches with me.

So I look back on those years these past couple days and I do wonder could I have fought differently and still have achieved the same results? Could I have held a little of myself back and still done it all? I am so thankful for what we have managed to get and to do but I am a little sheepish about some of the raging that occurred on my part. I didn't know it then but I was battling against myself just as much as I was against anyone else. I was battling against the irrationality of my son's complex neurological makeup and the uncertainty. Not to mention the fear that I felt and the grief. Yes, I admit it finally, I was grieving. I couldn't see it then. I couldn't admit to it because it felt like a betrayal to my son if I did. That I was saying I couldn't accept him for who he was. But I really did think that if we "tackled" all of C's "issues" early enough and hard enough that we could alleviate a lot of it. I wasn't in a place to accept or even to see that this was going to be a long hard road. I believed in my son and I wanted to accept who he was but I also knew he needed to be able to live in this world of ours. I knew it was going to be hard. I wanted to make it better and easier for him. Perhaps, along the way though, I could have made it easier for myself as well.