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    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
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Of wounded animals

Today I’m having a hard time holding my heart in one piece. It is feeling fragile where my youngest is concerned. I’ve shared with you our feelings that he may be mildly autistic. Unfortunately, this revelation came to us at the same time as his third birthday and the time that we began to fall under the benevolence of the local school district for special education services.

The blogosphere is chock full of horror stories of IEPs gone wrong and advice on how to take control of a system which takes those kids least able to fit their rectangular selves into the typical round holes – and puts them into square ones instead. I can’t say our experience has really been any different in the whole 2 months we’ve been at this.

Exactly one week after D’s 3rd birthday I requested an autism assessment and explained why. Later that week our Case Manager let me know that we would probably discuss it in June at our next IEP. Now, I work for the government so you’d think I would be used to how painfully slow the wheels can turn at times… but this is my kid, not some random supplies we’re talking about. So I let her know in no uncertain terms that discussing it in June meant no action until the fall – and that was NOT acceptable to me.

Small scrap with wonder sitter. Little League. Work. Next thing you know, I’m reminding them that, hey, aren’t we supposed to be having another IEP before the school year ends, like, next week? Hello???

So, no assessment. And I only reluctantly got them to agree to one at the IEP. In the fall.

He’s just too high functioning for his own good. Just because he’s not rocking in a corner doesn’t mean he doesn’t have his issues or need coping skills and intervention. Take today for instance.

D woke up at 8:45. I had pictures scheduled at 10:00. I played in bed with him a little & made his breakfast. Then told him we were going to go bye-bye.

Freak out #1. “No. I NOT going bye-bye. I staying home in my truck!” Not a real truck, mind you, but a chair or couch or even a step and a belt (seatbelt) and a plastic Hawaiian lei (shoulder harness) which has been his “truck” or “car” virtually every waking hour for the last 2 months. Coincidentally, the truck/car play began just about the time the vacuum / mower /blower noises-from-hell ended. In short, it’s his latest perseverating behavior. He kicked, screamed and wailed for his truck half-way to town.

For the pictures, which he hates, I bribed him with swings at the playground for as long as he liked if he smiled and was happy. Ok. So it partially worked.

At least until Freak out #2. He and B were hanging out in this nice climbing tree getting their mugs snapped in fine fashion (sans sandals for easier climbing). When I brought him out of the tree he insisted on being set down before I could put his shoes back on. Now our grass at home, which I lovingly refer to as “old lady grass” because of the old lady that lived there before we did, is quite fine bladed. I’ve also been known to call it guinea pig grass because when it gets too long it lays down in all different directions like a guinea pig’s hair. But I digress… My point here is that our home turf is quite soft on the tootsies, yet D still can hardly tolerate it. Shoes are a must if he’s playing in the yard. One look at the sturdy industrial-strength grass we were standing on and I knew he was going to wig. He did not disappoint.

Little bits of my heart began chipping and breaking away as I listened to D wail plaintively as soon as his bare feet touched the coarse grass. “I don’t liiiiiike it,” he cried. And he couldn’t possibly have gotten any farther up on his tippy-toes if he’d tried. “I don’t waaaaaaant it. Shoes. Shoes. Shoes! SHOOOOES!”

And he can’t even see where the grass isn’t so he can go there and end the torture. All I could do was pick him back up as quick as I could and try to calm him. It wasn’t quick and it wasn’t easy.

There were a few other minor freaks: backing out of the parking spot when he DID NOT want to go backwards and later pulling away at a green light when he wanted a red light instead. Nothing too traumatic, however, until later this evening.

He and I were having a great time reading our favorite books, Mr. Brown Can Moo. Can You?, by Dr. Seuss and Giggle, Giggle, Quack, by Doreen Cronin when he decided he wanted to play his piano. Suddenly this became the most heart-wrenching thing I’ve watched him try to do. Welcome to major Freak out #3. Instead of pushing the keys and synthesizer buttons like he usually does, he became instantly agitated. He just kept repeating, “That’s not it! That’s not the one. That’s not the right one!” And he’d scream in frustration, bang on the piano, bite his arm and cry. Over and over.

I tried calming him down and asking him what, exactly it was he was looking for. Turns out it was a car sound. I should have realized. Every so often he would lay both hands on eight keys at once (four each at opposite ends of the keyboard) like an angry driver laying on a horn, and say “there it is…” Then just as quickly as he’d found it he would lose it again. And the biting, slamming and screaming would begin again. Along with his begging “Car. Car! Car! CAR! CAAAR!”

I finally just had to pick him up and take him outside. I talked to him in that soft whisper-mom voice like I used when he was a tiny, red-faced infant. The voice one uses for wounded animals.

My heart broke for the level of frustration I watched him go through. Frustration over something only he could understand. And I so badly wanted his Case Manager and the school district psychologist that will be evaluating him to be there.


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