Rollercoaster Moments

I logged in a few hours ago and began this post - it started like this:

"I HATE OCD - I hate that it compels C to ruin a day he has been desperate for weeks to have. I don't know how much more of this I can take, the run ins literally make me ill with anxiety"

C had slept in this morning and I ran around trying to get some housework done. I had invited my friends boys over to play today and was hoping to get the upstairs passable so that I could spend time in the basement with all 4 boys to make sure that C didn't have any "episodes". Honestly, things have been progressively getting better with respect to his moods since we took him off the new medication but I wanted to make sure I was on hand just in case.

As soon as the boys showed up at the door, C was in the oldest boys face (lets call him Jake for the sake of this post). In his incessant, pressured speech C began to list his demands "Jake, you need to stand over there. I am going to teach you Karate" and even while Jake politely declined, C headed off to change into his karate gear. It's important to note that C had briefly taken Karate last year through the community centre so he really does not know Karate. He did get Karate Kid for Christmas and watched it yesterday so that probably was where this obsession was coming from. He kept badgering Jake even with me running interference and eventually I sent Jake upstairs to play as I was beginning to fear for his safety as C escalated. I admit it, I felt frustrated and desperate. In moments like this he is soooooo fixated. In my heart I know the only way to ease the situation is to go around it, not try to tackle it head on. But I have moments of self-doubt at times and sometimes I am tired. After a few attempts to discuss it calmly (there was no calmness going on), I went straight for distraction and suggested Playstation. it was eery how quickly he refocused.

And within an hour I am feeling more like this:
"my son is amazing. He is so patient as he teaches our 4 year old friend how to play Lego Star Wars on the PS2. He even turned on the invincibility feature and pauses mid lightsabre wielding to coach him on what buttons to push.He has come a long way"

Will I ever get used to the roller coaster moments?

Merry Christmas

Merry Christmas to all! We've had a great time in our house the last few days. No guests, no commitments, just lots of family time. Oh, and a trip to the ER on Christmas Eve for J, who fractured his wrist in a seemingly innocuous fall (for him that is). I try to see the silver lining in these things, which came in the form of free parking at the hospital. A few weeks ago we had to go there for J's hearing test and it took us 45 minutes to find a parking spot and then had to pay close to $10.00 when we came out. So all in all it was a good night for it to happen. I don't think it will be the last ER trip for J, in fact I'm kind of surprised that we haven't had more considering his high energy.

From our family to yours - happy holidays

Time to slow things down

On Tuesday my darling C was forgotten at school at the end of the day and it was completely my fault. Not sure how many times our in home worker would have needed to remind me that she could not pick him up this week - obviously more than she did. He was fine, luckily it was a day that they have homework club and some teachers stay later. He was fine, I wasn't. If the school secretary hadn't persistently called (because of course it was the ONE time I had forgot to take my cell phone into our weekly team meeting) I wouldn't have realized he wasn't where he was supposed to be. As I raced to the school I tried to keep it in perspective, telling myself "these things happen". But, you know what, they shouldn't. I think we all have our limits and expectations in life. I expect that no child of mine will reach the end of their long school day only to find out that they have been forgotten. So while I am not beating myself up over it I did decide as I walked into the school that something has got to give, I CANNOT and WILL not keep up this pace and live like this.

Other mom's may be okay with running around like a chicken with their head cut off. Really not an image I am trying to emulate. I don't want my kids to only experience frazzled and stressed mom. Then my wonderful husband came home that night, without even knowing just how crazy my day had been and proclaimed "I was thinking today that maybe you should go ahead and quit your job". I've been talking about it off and on for a very long time. I do love my job but I work in early intervention and it is a very emotionally exhausting job. It was fine before kids, before the depth of what C needed had really sunk in. I even reduced from full time to part time upon return to work from adopting J. All that seemed to do was make me try to fit 5 days work into 3, it never works out.

So my husband is even giving my plan his first bought of blessings and then I balk. Do I really need to QUIT? I will lose the benefits and the pay. Can we really do without it? What if I quit and regret it later? I begin to think maybe what I need is to ask for a leave of absence, protect my job but give myself some time to try to get my house and life a little more in order. Great idea. Only thing is, to ask for one I would have to be caught up on all my paperwork - that might take a while because I can't catch up because I have too much on my plate.

The morning after forgetting C, I walked the boys to school through the 2 inches of snow we had received. The boys were so excited by the snow and I tried to keep myself in the moment but really I was stressed because I was running late and really needed to get started on paperwork. After dropping them off I headed home, put the keys in the car to start it while I cleaned it off. Then I went to jump back in to the toasty warm car only to find that I had locked myself out. Luckily I had my cell phone in my pocket. I called A to come rescue me and then I called my boss. I laughed as I told her what I had done. She answered "you are really not having a good week, are you? But at least you can laugh about it". Well, I either laugh or I cry. So while I stood in my driveway, watching snow melt off my car, I laughed and laughed until I cried. Don't even want to know what the building full of senior citizens across the street thought of my antics.

Progress

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.

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.

Dear PRINCIPAL
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.

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.

"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!"

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???

Happy Halloween

C took this pic last week, he's really into photography and was ecstatic yesterday when we gave him our old digital camera to use.

Playground Tales

I'm mad, I'm sad, I'm despondent, I'm confused.

Took C & J to their favourite park today to burn off some energy. While J ran around like a maniac in his fireman rain boots, C headed off to try to make friends to play with. He zeroed in on 2 boys that were likely brothers, approximately 6 and 8. He pursued them relentlessly. I could tell the older boy didn't feel comfortable and didn't want to play at first. C persevered and the younger one began chasing him. Eventually the older brother joined in. There was C., his motor tics going like crazy (he has one right now where he puts his head off to the side and almost touches his ear to his should while he contorts the rest of his body). Difficulty was, C really didn't clarify what game they were playing or how to play and he was much faster than the other 2 boys. And I'll be honest, he does look a little "weird" with all his motor tics. The boys eventually gave up and went off on their own again. I tried to distract C, to no avail.

He pursued the boys again and I overheard a girl (possibly the boys sister) tell them to "just don't talk to him". I couldn't help it - I said in a loud voice right to her "oh, that's real nice -he just wants to play". Meanwhile, C had cornered the boys and called for me, when I went over he said "I need your help Mom, I just want to play with them". the boys really did look like dear caught in headlights. So I focused on C and said, "I think you are confusing them. They don't know who you are and you keep telling them what to do. You are still a stranger to them." I could see the older boy nodding his head out of the corner of my eye. C turned and put out his hand "Hi, I am C pleased to meet you". The older boy wouldn't take his hand (I don't blame him - what 9 yr old shakes hands??????) and C just stood there and said "You're supposed to shake my hand and tell me your name". The younger boy shook C's hand and offered his name, to which his brother shot a dark angry look at him for. For a few minutes the boys played together again, everything seemed fine and I stayed close by. The older girl promptly went to her father and was whispering and pointing at C and suddenly they were leaving.

As they walked away C (who didn't understand what was happening) tried to follow them and was resistant when I tried to get him to come back. He really thought I was the one stopping him from playing with his new friends. He started to have a meltdown and I almost lost it, I was so frustrated by the whole series of events. I didn't know whether to cry or to scream so instead I said in a loud voice - "I know you want to play and I know you didn't do anything wrong. I guess that girl and her dad just don't know you and don't understand your Tourettes. Maybe one day someone will teach them how to be nice".

I'm not saying it was a great thing to do. It did stop C in his tracks, he suddenly stopped fighting me and said "It's just not fair" and as we walked behind the family trying to high tail it out of there I put my arm around his shoulder (which he didn't shrug off right away for once) and said "I know. You were trying but some people just don't understand".

Just this once

C called me at work today, all bent out of shape because apparently his father had told him he couldn't watch J play video games with him (I'm sure there was more to the story - like he was irritating them and had been forewarned). C was adamant that I talk to his father to "tell him he's wrong". Oh boy, I'm sure that would go over just great. I told C that I was sorry but that I'm not the boss of his dad. His response, "can't you just take my side just this once?". It was a good attempt, and part of me wanted to cave but my answer had to be "no, C, you'll have to work it out with dad. Mom's and Dad's have to be on the same side". There was a pause and then "Oh, so is it like a law?" - Yes, C, it's a law :-)

Shoe Woes

When I picked J up from JK today the teacher told me, yet again that "he likes to throw his shoes". I know I should take it seriously (I guess?) but everytime she says it I want to laugh. Side splitting, totally inappropriate laughter. Of course it's not ok, of course it drives me crazy when he does it at home, of course I remind him each day "and we don't throw our shoes up in the air". Today when she told me he said, very seriously, to her "I know Ms. T! Next time I come to JK I promise I won't throw my shoes" she said "It's a deal" and they shook on it. So why don't I feel reassured that it won't indeed keep happening?

Don't talk to me about BEHAVIOUR

For the first few years that C had an IEP at school, I dreaded reading the goals - things like "needs to learn to pay attention" for a child with ADHD seemed, well, insulting. I kept using the analogy of a child with a visual impairment and would ask school staff "would you write on that child's IEP that he/she needs to do a better job with sight reading?". I know people got their backs up and were incredulous - afterall, how could I not agree that my son needed to pay attention? I'd like to think that a few people over the years have understood what I am trying to say - even if they couldn't actually do anything about it.

I struggle day after day, particularly lately, with what is a part of my son that I need to accept (and advocate for others to accept) and what can be "worked on". How do we find a happy medium where he is getting a clear message that he is loved, accepted and appreciated for WHO he is no matter what that entails? Isn't that what we all want in life? I struggle with finding a balance between having healthy goals and objectives to work toward to set him up for success and allowing other people's good intentions to slowly erode his self worth. When is it NOT "behaviour" (a term I really HATE now) but rather a symptom of the child's disability? No one would dare to imply that a child with cerebral palsy is choosing not to walk or that a child with Rett's syndrome is choosing not to uncurl their hands - and yet, it's ok for people who surround my son to expect that he will exercise "good judgement" when it has been proven through appropriate testing that his brain lacks this intrinsic ability.

Tired

I wrote this in September 2005 and just came across it while cleaning up the computer . . .

I took my sons to a birthday party today. I stood in the yard, playing “referee” for my older son. Redirecting him, rescuing him, stepping in before he “lost it”. During one particular interaction I stopped mid-sentence, breathing deeply and the thought swam around in my head – stopped on the tip of my tongue just before I spit it out “I’m tired”.

I’m tired of sounding like the maniacal overbearing mom – the one who everyone knows her kids name two seconds after they enter the room because she’s just screeched it 10 times. I’m tired of getting together with friends and never being able to have a conversation with anyone beyond ‘oh, hey how are you . . . oops, gotta go.”

I’m tired of willing my brain to work faster than my seven year olds so I can find a loop hole in his logic and prevent us from getting into a deadlock which results in screams and tears from both of us. Amazing how these things always turn into a “lose-lose” situation.

I’m also tired for my son. For the way his eyes plead with me to help him to stop doing the things he knows he is not supposed to. For the way his body moves and leaps whether he wants it to or not. For his struggles to find a way to play with the other kids for longer than a minute. For the length of time it takes him to utter one sentence because his vocal tics are so extreme it’s like he is a broken record. For the people who quickly judge, condemn and dismiss him as a “bad apple” or “a spoiled brat” because they don’t even try to see the smart and thoughtful boy underneath.

I am tired for my husband who often gets left out of the loop – who struggles to connect with our dear son. Who my son wouldn’t allow near him for the first six months that he lived with us. Whose words are often dismissed because “But mom said . . .”

I am tired for him because I can see how hard it is for him to go to school everyday. A day filled with demands and rules, expectations set so high that he will never be able to meet them. I cannot begin to imagine how it feels to be set up for failure each and every day of your life.

Looking back

In September our youngest, J, started Junior kindergarten at the same school his brother has attended since JK. Although he isn't 4 yet he was more than ready and very excited. That first day walking him there I felt excited for him too (and for me too) but I also felt nervous. I couldn't help but worry that he might not be able to sit and pay attention. I flashed back to C's first day of JK when the Principal called me to inform me that he had an altercation with another little boy and picked up one of the large blocks and hit the child across the head. I KNOW J is not C, just like all younger siblings he deserves to start school with a clean slate. I knew the staff wouldn't compare him to his brother and I knew in my heart that J's abilities and strengths socially and emotionally at this age far outweighed his brothers at 4.

I carried my cell phone around all morning. No call came. When people asked me how I handled dropping off my baby at school how could I tell them that I had no problem dropping him off, I was more worried that I would be called to come pick him up?? The second day when I went to pick him up I overheard a few mom's talking about their concerns for their Jk'ers. One mom was worried because her daughter was so clingy and anxious. The other was worried that her active and strong willed son wouldn't do what the teacher asked or that God forbid he might have a tantrum and be put on time out.

I wanted to go over and tell them - "oh, you have nothing to worry about. The staff here are wonderful - they've seen it all. They taught me older son who hit a child upside the head with a block the first day and spent almost every day of JK and SK in the principal's office" - but I didn't.

Instead I stood back and waited until I saw a little boy approaching with his jean jacket and backpack and a smile so big it lit up the hall. Instead a crouched down and smothered my youngest in kisses and leaned in to hear all the stories about his morning. I basked in this light, my youngest ds and stored this moment in my mommy memory bank. And that night I cried a little, grieving that C nor I got to have moments like that those first few years.