Wednesday, November 28, 2007


I am happy to report that C is back in school. His removal only lasted one day. I anticipated a huge knock down drag out fight with the school. Instead I received an email shortly after I sent mine to the Principal, stating that a plan is in place (sounds like a good plan at that) but of course no acknowledgment of wrong doing or attempt to mend bridges. I guess that will be down to me.

C seems much happier the last couple of days - gee, I wonder why? He got punched in the face yesterday by another child and didn't retaliate. When I asked him about it he told me "Look Mom, the kid was having a bad day. He apologized, I accepted his apology, we left it at school. Case closed". So there! Boy has he come a long way. I think the EA was more upset about the punch than anyone else.

We are really seeing C growing leaps and bounds with regards to planning and problem solving. Case in point, on the weekend he was bored and wanting to call people. He knows we would limit who he was calling so as soon as our backs were turned he got hold of the phone and called a bunch of people, including his therapeutic riding. When A drove C to riding this morning the staff were, for some reason, all surprised to see C. Turns out he called them and left a very composed and professional message that he would not be coming this week. A was stunned (as was I when I heard) and C was upset because I don't think he had thought his plan through. Turns out he wanted me to take him instead of his dad (we alternate weeks) and somehow thought canceling today would achieve his goal. Natural consequences are a good thing, he couldn't ride or work in the barn because they weren't expecting him. Somehow I don't think he'll try that one again.

So, while his logic was faulty it does seem he tried to apply some. And that's a big step.

Tuesday, November 27, 2007

Give him his dignity!!!!

I admit it people, I lost it. I saw red when dealing with the school yesterday and I told the principal to call C's class and have them get him ready - I walked out the front door with an estatic 9 year old boy with a forced smile on my face. I really wasn't sure what I was doing, I just knew that I could not leave my son in a place that would do such a thing to him. I'm posting the letter I wrote right afterwards to the school so you can better understand (names and identifying info have been removed). For any American friends reading this, please bare in mind that our processes (read: lack of laws) make education very different than it is in your neck of the woods.

I am writing to follow up on the conversation that occurred this morning in your office with regard to my son C and the washroom. On November 13, 2007 I received a voicemail message from Ms. Blank where she simply left her name and asked me to call her. She and I were able to speak on the phone the following day where she abruptly informed me that "C will be using the Senior Kindergarten washroom from now on". I was shocked and explained that C has long standing washroom issues and that his using the private washroom was agreed upon by his team at school when I brought him in at the end of August. I explained that perhaps Ms. BLANK wasn't aware of all this and her response was that the "handicap" (her word, not mine) bathroom is "not for kids like C" and that is why he is no longer allowed to use that washroom. C had shared with me the evening before that he had "peed all over" the toilet and received a detention for it. I asked Ms. C if this was the reason for the change and she indicated this was part of it but that there were ongoing issues (which she didn't expand on or explain) and that his using the SK bathroom would allow the EA to "have more control". I told her, very clearly, that we were not in favour of this plan and that we did not want him using the SK bathroom.

Last week I mentioned to you PRINCIPAL that I wanted to set up a meeting with you to discuss Ms.BLANK's phone call and the bathroom issue. At that time I indicated that I was not in a rush for the meeting as I had no reason to believe that, contrary to our wishes, C was using the SK bathroom. However, I did want to follow up with you with regard to my concerns for the tone of the conversation and the inappropriateness of someone not of C's team calling me and changing plans that had been carefully devised with his unique needs in mind. I intended in that meeting to discuss these issues to in order to avoid future incidents. Following my conversation with you in the hall, however, C made a comment at home about having to use the "baby bathroom" at school and this led me to discover that he had, in fact, been made to use the SK bathroom. I attempted to call the school to speak with Mrs. M (who is his LSST and seemed the appropriate person to discuss this with) on Thursday and Friday of last week, however, she was away. This is why the discussion occurred today.

Forcing our nine year old son to use a washroom that is designed for four and five year olds and housed within the Kindergarten room is inappropriate and degrading. When I explained to you this morning that C views this move to the Senior Kindergarten bathroom as a
punishment you agreed and said "well, yes it is - he peed all over ______ (CHILD's NAME REMOVED OUT OF RESPECT FOR HER PRIVACY) velcro straps that are used for her toileting". I admit I was astonished that you would agree with the wording of PUNISHMENT and that you could not understand why I felt so strongly that C not be forced to use a toilet that is too small and is inappropriate. Punishing a child for actions directly related to his disability is in direct violation of his human rights. C himself has shared with us that he does not like to go to that bathroom as it is "for babies" and with his OCD issues around toileting this is having a detrimental effect on him. Forcing him to use the SK bathroom is a violation of his rights and an assault on his dignity and we cannot stand by and allow his self esteem to be so blatantly eroded. I removed him from school today as we cannot and will not stand by while he is actively punished for his disability.

As you are aware, we have been asking for a written toileting plan for several years now as concerns with C in the bathroom are long standing. All I wanted today was assurance for you that C would not be using the SK bathroom. I understand that a longer term plan will take some time and I am confident that you will include us, his parents, as part of that planning. This is why C and I came to the school on August 30, 2007 to try to problem solve what might be an appropriate bathroom for him to use that accommodates his unique toileting needs stemming from his TS, OCD, ADHD and learning disabilities.

It does seem that there has been break down in communication between Mrs. BLANK and members of C's current school team. I understand that my insisting that C NOT use the SK bathrooms, effective immediately, was a surprise to you. This is unfortunate as I believe I was very clear with Mrs. BLANK during my conversation with her on November 14, 2007 that we were NOT in agreement with this plan and did not want this to occur.

We are confident that this matter will be addressed in a timely fashion so that C may return to school a fully integrated and accommodated 4th grader with his dignity and self worth intact.

Sunday, November 25, 2007

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.

Tuesday, November 06, 2007

"Just call me Detective"

C tends to take things and hide them. He does this for any number of reasons - his OCD, attachment issues, need for control, a combination of them all. We've tried many things and really it's not an issue if he wants to eat food, why then does he have to take it, take one bite out of it and then hide it? He's not overly sophisticated at the hiding thing either. It might take him months of getting "caught" in one hiding spot before he moves onto a new one. Honestly we just don't put much energy into looking anymore, although we probably should. It's usually A that finds the "stash" (can you tell he's the cleaner one in this household?) and it drives him crazy.

Well, the last few days J is finally earning his stars as an annoying little brother. He's obviously been watching his older bro and has now started to tell on him and give away his secrets. Hmmm. Never occurred to me to ask the little guy. Today J is still home sick and after lunch he asked for some candy (I know, but it's a throat infection, not the flu) but I couldn't find the bowl. I started looking all over and finally threw my hands up and said "sorry, I can't find it". He jumped out of his seat and yelled, "I know where it is" and raced into the basement. A moment later he called for me and I went down to help him extricate the bowl from the hiding spot C had found for it. Since then he has also brought me a video game and a pop tart (1 bite taken) from a hiding spot in their shared room. When I thanked J for his help, his response with his hands on his hips and a wide stance, "Just call me detective!"

Monday, November 05, 2007

Just a little respect

Lately A and I have been discussing how to give C more freedom and responsibility while keeping him safe and not setting him up for failure. He basically has supervision the entire time he is awake. We live 100 metres from the school yet I walk him to and from everyday and when at school he is with an adult at all times. The first few years of school C went into the yard before school with all the other kids and came out with them at the end of the day. To my knowledge he ate his lunch with his class in Grade 1 and had recess. Not sure exactly how it came about but now in Grade 4 we are fighting to have him out at recess and to eat lunch with his class. He goes straight with an EA in the morning to the "games room" before school. This situation has bothered me for quite some time as I believe in TRUE inclusion and this just flies in the face of it. We've been working on it, trying to get things changed and slowly they are. We have a big meeting about it in 2 weeks.

A few days ago J was refusing to get his coat and shoes on for school so I sent C on ahead, watching him from the sidewalk and he did fine. He was so nervous and kept looking back over his shoulders but I could tell he was proud at the same time. When I told dh that night he thought that was great and added that when he drops C off at school after therapeutic riding he just lets him out of the car - I've always gone in with him.

Fast forward to today - J is sick again which sends everything topsy turvy. This afternoon I decided rather than bundling J up and exposing everyone to his germs, that I would call the school and ask that C be sent home with me watching from the sidewalk. Our school secretary was not there today and when I explained to the replacement there was a long pause and she says "well, would he be in a class right now or with an EA"? I was taken aback by the question, it's 2:00 in the afternoon for pete's sake so I answered "well - he better be in class!". In my head I'm thinking "oh yeah, we believe in integration, so much so that it's not unusual for kids with EA's to be out of class for no reason". So she says "Let me go ask, can you hold?" . I'm standing there thinking - what do you mean you are going to go ask????? What, just because there is an EA he suddenly wouldn't be capable of doing this? I mean - I AM the mom, right? I found myself wondering what I would say if she came back and said "no". She came back and said "She said that's fine" and as I hung up I found that my heart was really hurting - since when do other people get to dictate what's ok for my child and to not even think twice about it? How is this respectful of who HE is??? What child at the age of 9 wants to be constantly guarded and never let out of an adults sight? One of the things everyone keeps talking to me about is getting C to take more responsibility for day to day things. Don't we then need to respect him and give him just a little bit of freedom then???