Tuesday, June 4, 2013

The day had started so promising.

Oy fucking vey. My child argued with his teacher (sped teacher...remember he refuses to go to school so he has his own deal going on) about how he shouldn't have to wear shoes throughout the school. He gets to just wear his socks in his classroom. He said, "But I'm a toe walker!" and "you just threw that on me!" Oh and he let her know that he doesn't like the way she treats him. Which makes me actually chuckle. Because it is so ridiculous. For the record, this woman is completely awesome and totally gets him and understands kids on the spectrum and that he is trying to gain some control in his world.

I was surprised that he had such a bad day because he had walked into the school by himself for the second time--yesterday being the first time--since I don't remember when...last fall maybe. I was actually in the office picking him up, gloating happily, telling the people in the office (who all know us so well by now) and the guidance counselor and the Sped liasion who all happened to come by. And then his teacher came to the door. Without M. And said that we needed to talk.

My boy should have been getting autism support since kindergarten. ABA therapy, the works. But he is so 'intriguing' and intelligent and witty and funny and interesting that his autism got overlooked. So now here he is in 5th grade, middle school in our town, starting from scratch with the supports. I cried. And when the Sped liasion asked what was wrong when she then saw me sad, M's teacher said I felt guilty. Guilty because of all the stuff that should have happened for M. years ago. No, I don't feel guilty. I feel angry. Angry because I searched and searched and no one helped me. So we kept trying to support and raise M. thinking we must be doing something all wrong. But in actuality, we were raising a child on the autism spectrum for 11 1/2 years and didn't even know it. I say we are fucking heros. I don't feel guilty.  I'm mad. But I have to keep moving on and doing what he needs now. I can't help but look back even though everyone tells me I shouldn't.

So tomorrow his teacher is going to work with M on his 'stresses' and will use starburst as an incentive. And it will work because my child is on the autism spectrum and he loves starburst. Or it may not work at all and he will tell her that he is 'done with her'--he told her he was 'done with the TLC' (the classroom/program that he is in.)

It's all kind of funny. Because it's true.

Thursday, April 25, 2013

Comment Continued...Dear Mrs. F:

Well, I've been feeling really down today and I now feel grateful that I don't get migraines. So in a weird way, thanks. You know I love you and don't mean this to be cruel. Today saying "hey, I've got all my arms & legs" so there's no reason to feel depressed wasn't cutting it. So I am grateful that my head doesn't hurt. Now I feel like a douche for even feeling so down. I just feel so exhausted and frustrated and annoyed with myself that I can't seem to make a change because this IS my life right now. I think I am depressed because of the bombings in Boston (my hometown) and that I still struggle with M's autism diagnosis & that every single minute of every single day is devoted to autism and anxiety shit. I wish there was a yoga place or even an exercise class only for parents with kids with issues. So i would be surrounded with a public that 'got it'. Maybe then I would force myself to do something. Remember when I used to work out almost every day--totally in love with kickboxing. Life was hard then but I still managed to do some things for myself. Now I don't do anything and I spend any time I could use for exercise chastising myself for not doing anything.

We have a team meeting at the school to review the results of the FBA (Functional Behavior Assessment). I got a copy of it today. Nothing enlightening in it at all. I am so sick of meeting and having nothing actually done. I still haven't gotten an updated IEP from the last meeting to review the most recent neuropsych evaluation in which M was officially diagnosed on the Autism spectrum. They have yet to do any of the things that they talked about doing at that meeting so I look at this meeting as another meeting to talk about more helpful things that they could do, but won't. This school year is almost over--once it hits May nothing gets done administratively. So they will talk about what they could do next September & the circle of special ed continues. It's so frustrating that one of the most effective things they could do would be to bring M over to his old building, expose him to his regular classroom, set up a 'lunch bunch' kind of thing with his old friends. It would make the most impact. Instead he goes to a special therapeutic type classroom in which he is the only student for the whole time with a smattering kids of different grade levels come in and out for periods at a time. This class is about as far away from his regular class and peers (a whole different building) that is possible. So a child who doesn't know what to say to his peers about why he hasn't been in class for so long & feels embarrassed by it all is not being helped with this through social stories or 'errands' over at the building. Nothing. So his avoidance and anxiety grows and grows. A parent can only do so much--I can't be the one to go into the school and do this with him. Believe me, I'd like to. Oh, and one thing that troubles me on the FBA was the possible recommendation of something having to do with "transportation" for M to school. Yeah, that's the way to make a kid feel less different. Make him take the short bus. This is because of the school refusal issue. I have no issue with the use of special transportation if your child needs it. But to suggest it for a kid with anxiety and the beginning of realizing that he is 'different' and no other medical reasons to go on this bus is not useful.

It is all so fucking unfair that when you parent a child with special needs that your parenting is so public. I just want to be like everyone else who just drops their kid off and drives off. And since I eat my feelings and haven't had any physical activity since this all went down last Fall, I am so fat and out of shape and feel like I look like "of course her child is out of control, she can't even take care of herself." I know I don't look that badly, but that is how I feel. I also don't give a shit what I wear as much as all the people at school I deal with--everyone looks so beautifully coiffed and dressed up with pretty jewelry and scarves and skirts. Well, sort of. And I wear some kind of rendition of my uniform of jeans and black shirt. Sometimes a scarf. Because everything is on hold until I get M. back to school regularly and in a better place. I just can't seem to add anything else. I thought about joining the very expensive fitness place that is open 24 hours a day, but the thought of having to interact with other people/moms in town I know is something I can't do right now. Hence I wish there was a fitness place for only moms of not so perfectly wonderful and normal situations/special needs or just having a nutty situation would be good. Life is good, but it can also be hard, annoying, shitty and not at all what you expected.

Over and out. I have to stop writing and start parenting right now.

Yeah, I owe you a phone call. Maybe next week. Love you. Hope you feel better. Sorry your head hurts so much. And your eyes. And sorry Kid's teacher is such an a-hole.