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

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

September 24, 2004

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

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

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

Competence and Camaraderie

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

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

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

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

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

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The Alphabet Soup of Diagnosis

I think we have reached an impasse. I am really struggling with what to do. On the one hand I refuse to be beholden to diagnosis, I don't want my child prejudged or held down by man made labels. I try to tell myself that the letters that exist after his name are already enough for a 9 year old, do I really want to add more? For what purpose? As it is we had a school meeting a few weeks ago and the Special Education coordinator was new and I spent five minutes just listing the various diagnosis and "issues" - all the while trying to start with my sons strengths and being respectful of all his wonderful qualities rather than making him sound like a walking DSM-IV

So here is the situation - when C had neuropsychological testing a couple years ago it showed that he had "multiple learning disabilities". Actually, it really said "what best could be described as multiple learning disabilities" or something to that effect. I won't rehash the whole experience but lets just say we have never really understood what that meant. We were not given specifics about which specific learning disabilities he has. Fast forward to Grade 4 and I am being told that he is reading at grade level and his Math is just slightly behind (not sure that I agree with the math but he is making steady progress). His writing is behind but considering his "below first percentile" in the Occupational Therapy testing and that he just got his computer this past September, he's doing well. I knew at the time the testing was completed that no one had a crystal ball and he was so young that we had to interpret the results with caution (even if the administering Psychologist didn't).

Everyone agrees that C has made huge academic progress and we are all delighted. Why then can I not just sit back a relax. Other parents grappling with the same issues will understand. I cannot sit back because there is soooooo much more to be done. C is still not allowed to eat lunch with his class. He "sometimes" gets recess and truthfully, he has no real friends. More and more he is struggling to understand social interactions. He just doesn't interact the way that "typical" kids do. He talks to people assuming that they already know what he is talking about, he dominates conversations or juss walks away when people are talking to him. He is enamored by a classmate and has made her feel extremely uncomfortable by trying to give her presents, staring at her and yelling "I love you" across the playground. He comes across as selfish and self centered and I know this is not true. The relationship between he and my husband is more strained than ever. Today he (C, not my husband) had a meltdown in the middle of Walmart, complete with punching me in the back and rolling around on the floor. Who is this child and why is it that this doesn't seem like just LD's or the OCD, or the ADHD or blah blah blah. Something else is going on and I am really thinking that we need to know.