Tuesday, April 6, 2010

I keep on waiting..waiting on the world to change

I'm lost and second guessing myself.

To me (and my husband) Andrew's regressions: his screaming "you are an idiot" to a kid that gets too close to him on a rope structure at the Bronx zoo, his slapping me in the face when I chase him down and hold an arm to tell him not to run ahead, his angry responses to friends and strangers alike, his hitting his friend in the back because he "misunderstood" that Timmy wasn't teasing him he was sing-songing about the Bug Carousel, his increased flapping, his S.E.V.E.R.E. anxiety about everything from the car window being rolled down, "please close the sunroof I'm scared", traveling on the highway, going on a bridge, going to school, going to church....I could list how things keep seeming to get worse for pages and pages but that would bore you (anyone? anyone? out there) and just increase my sadness.

Regina, my friend, and a special education teacher herself doesn't think this behavior is atypical - that all kids do this. I don't see all kids doing these things - am I blind and deaf to other children? I don't think so.

At church, Andrew actually kicks the seats in front of us if someone, particularly a child sits in front of him. I don't see other kids doing this - other kids are happy when a child sits near them - a partner in crime. Not my boy.

I guess I keep on waiting for my child not to be autistic. I keep on waiting on a miracle. The school psychologist when I spoke to her for five minutes this morning - left me feeling even more depressed. She was listening but not listening - because she was standing guard on the sidewalk. I suppose if your kid isn't ripping off another kids head - all is well. I keep waiting for that day to come. "Mrs. Hartin you were right - Andrew is very violent. Billy can't find his eye." I know they miss things, I've seen it myself and one day someone is going to get hurt. He's only five now (almost six) but soon he won't be a little big boy. He'll be a big kid who will hurt someone. Please don't let that happen Lord (are you listening God?).

Yes, he is respectful to the teachers. But not everyone in the world gets down to his level, talks all 900 number voice to him and understands how to deal with him. Another child, another adult -- they don't get it - they talk to him and they are likely to get a fistful of grubby fingers. The real world - people we got to get him ready for the real world.

I feel like I always have to be on. Again, Naomi Campbell's handler. I get so mad seeing other parents relaxed, talking to their family members and letting their children frolic and I have to be within a few feet to pull a child out of harm's way. It's mentally and emotionally exhausting but it is what it is.

Everyone I talk to about this PANDAS thing seems to understand only one compotent of the syndrome -- the OCD aspect -- (there are many if my reading and comprehension skills haven't failed me) - not that Andrew has been confirmed to have it - but it seems to me OCD can be described as doing one level on a Wii game over and over and over and over and over again - amongst other things. All I know that is when Andrew is coming down with something that causes a fever - for a week or weeks before - his autism really SHINES - which makes me think that he has something else besides the autism and ADHD issues - that when he gets a virus/bug that everything becomes worse and the pediatrician thinking the PANDAS type syndrome makes sense. (To clarify - I know without a doubt Andrew has Asperger's - no questions - but I believe something else also kicks in before he gets sick - something that ups the ante.)

Andrew has totally changed his eating habits. He can't stand any smells. He won't hold my hand anymore. I have to hold his covered sleeve. He freaks to high heaven when I have to change his clothes....here I go again boring you (anyone? anyone?).

I keep on waiting....

PS - As I re-read this I know I am ranting - but that is what I do best. :-)
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