Sunday, October 28, 2007
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".
Friday, October 26, 2007
Thursday, October 11, 2007
Wednesday, October 10, 2007
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.
Tuesday, October 09, 2007
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.
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.