Friday, September 19, 2008

Sometimes, Even a Supermom Gets Tired of Fighting

I've never been much of a fighter. I was always one of those people who just sort of stepped back and let people do what they want. If it bugged me, I never said anything. Then I had the Beast, and the mama bear was forced out of me. If I don't speak up for him, no one will. So, I do. And I've gotten very good at it. But, can I just confess that I'm really, really, really tired of having to fight for common sense? The soccer thing was huge, and yet it was something so simple. The kid wanted to wear his hearing devices to play. I won the battle, but the soccer association made it into some huge blown up deal. And, now I'm battling with the school.

Warning: Long-winded vent ahead. If you make it to the end, you get a cookie.

So, the Beast is totally oral. He uses sign only when he can't wear his hearing stuff. An interpretor is not an option for him because he's so very oral. Because he's doing so well and speaks so beautifully, he doesn't have the option of being in a Deaf Ed. classroom. That's wonderful!!!! But, it's also a curse. The school district has to serve him simply based on his diagnosis of bilateral hearing loss. And I'm going to make them. He does have some needs, especially social, that can't be met by just being home with his psychotic mother all the time.

At the end of the year last year, I received the call that it was time to set up his ARD and determine his placement for this year. During that phone call, they basically told me I didn't have any choice but to put him in Head Start. I made clear that I had some very serious reservations about that, and they insisted that it was the right place to put him. I was literally in tears over it because he's been in fully mainstream classes before where the teachers didn't understand how to communicate with him. Yes, his speech is good. Yes, he hears pretty well with his processor and aid on. But, he needs time to process what is being said and fully understand it. And, if there's added background noise at all, he misses big chunks of what is happening around him. Because of their lack of understanding, he really struggled last year with getting in trouble. I'm not denying that he's a handful. But, it's not always totally his own fault, either.

Anyway, they had me tour the Head Start program, and even choose the teacher I wanted for him. I did that, and found only two that I was really okay with. They had some special education background and spoke my language in terms of what I was best for him. So, I relented and let him go to Head Start with the understanding that he'd be in with one of those two teachers. Guess what? He's not with either one of those teachers. I was told that the one we really wanted would be teaching 3 year olds, and that wouldn't be a good placement for him. Okay, fine.

So, he is placed with another teacher, who has been on maternity leave and hasn't even set foot in the classroom yet, except for a few minutes to show off her new baby. They tell me she's "perfect for him because she knows sign language". Ummmm, if you'd read is ARD, you'd know he's ORAL!!! Idiots. This is NOT perfect for him if you account for the fact that the teacher won't be back until the very end of this month.

I've gotten calls from the aid in the class so that the Beast could tell me what he'd done wrong all day long at school. He is so upset by the time he calls me that he can't even talk. The kicker? I'd never once received any kind of feedback from the school telling me they were having problems with him. Never. The aid says she's "been butting heads with him from day one". I don't mind if you call to let me hear what he's done wrong, but you sure the hell better call to let him tell me what he's done right, too.

To top it off, his classroom is still not equipped with the FM system he needs to drown out background noise and hear the teacher. He's getting in trouble for "zoning out in group time". HE CAN'T HEAR YOU!!!!! The other kids are wiggling around him, the air conditioner is on, and whatever else. If you are not doing what he is ARDed for you to do, you have no legitimate reason to complain when he doesn't comply with your wishes. She tells me she knows he hears, but just doesn't want to listen. Ugh!!!!!

I asked if she's complying with the ARD and verifying in a very specific way whether or not he heard AND understood what was being said. She says "I know he heard me. He just doesn't want to do what I asked." That's not the right answer.

He was also ARDed to have a meeting with me, the teacher, and the school nurse BEFORE school started to sit down and go over how to use his equipment. I don't know how many times I've asked for this meeting to happen. They just keep telling me to wait for the regular teacher to come off of leave. Um, six weeks after school starts is too late. Period. He's frustrated.

I called the aid again a day or so after she called me and just wanted to check up to see how he's doing. Same story. He's a problem in group time and in nap time. He's ARDed not to nap because his circadian rhythms are a mess and any nap will mean he doesn't go to bed until 2am. She says he's too loud at nap time. I ask what he's given to do during nap. He has to sit on his mat, but they do give him a stuffed animal to hold. Thanks, but a stuffed animal isn't going to do it for a kid for a full hour. I aksed if she'd given him a book like I'd suggested before. Yes, she has, but they won't do it again because he wants more than one book and that's not okay. What??!! One book is not going to keep any kid entertained and quiet for a full hour. Why are they not using this time to really work with him one on one without the noise distractions of the other kids? I said I'd start picking him up and bringing him home at naptime. She said I'm not allowed to come get him. Full attendance is mandatory. You can't tell me I can't come get my own child from a school where he's miserable! And, furthermore, the ARD was mandatory, too, but they don't feel the need to follow it. If they can't do these simple things for him, I'm not doing much for them.

The Beast is miserable. He doesn't want to go to school. Even when he was in trouble last year, he still wanted to go. I asked him why he doesn't want to go, and he says he has no friends. This is a kid who could make friends with a corpse, so him feeling lonely is a huge red flag. I asked the teacher about that. She says it's true. He has no friends because more than half the class in only three years old and they don't know how to play like a five year old. WHAT?!?!?! He couldn't have the teacher I wanted because she was teaching mostly three year olds, so he gets put in some other class with the same situation. AAAAHHHHHHH!!!!!!!! She says there are some 4 year olds in the class, but they're best friends from last year and don't like to play with anyone but each other. Poor miserable little guy.

So, now he has no friends. He is being taught a curriculum for three year olds, even though he is reading and writing very much on his own. He can't hear half of what's going on. We don't know if he's really understanding what he does hear because the teacher won't check for clarification. He is too loud at naptime. And he only gets acknowledged when he's in trouble. Am I the only one who sees a really serious problem here?

I have tried calling everyone and their dog. I'm tired of fighting. I'm not quitting because I love my kid too much, but I won't pretend I'm not emotionally exhausted by the whole stupid situation. The head of Head Start was kind and said she'd look into it. The principle at his current school completely dismissed me and said I should just wait it out until the regular teacher comes back. It will be too late by then. It's already too late. The damage is done. He has a bad taste in his mouth about school. The aid doesn't like him and sees him as a problem. Waiting another minute is not okay. At all. And, in case that's not enough, he can't go by the nickname (his first two initials) he's had since the day he was born in class. He must go by the name on his birth certificate. So, while they're destroying his self-esteem, they're also taking his identity away. Why not just poison the kid and put him out of his misery?

We've looked at other options for him. Most of them are waaaaay out of our price range. If I pull him out of school, and keep him home with me, he's not getting the social time with his peers that he so desperately needs. The kicker is that he just missed Kindergarten by 4 days. All of his friends from church got to go, but he's stuck behind. And he's so ready for Kindergarten, at least academically.

I finally called the principle at Number One's school. This is an amazing man who really fights for the best interest of special needs kids. I laid it all on the line for him. I told him I've tried every single line of authority to no avail. He's looking into loopholes in the birthday rule for getting into Kindergarten, but he isn't finding much. He did note that Kindergarten is NOT required in the state of TX. Plus, if a child has completed a grade, the school has to promote him to the next grade the following year. So, if I homeschool him for Kindergarten this year, and can prove it, he could go straight to first grade with his friends next year. And, he'll be in Number One's school with a principle who cares. And, I can basically hand select his teacher. (I already know who I'll choose, too.) He also gave me the number to the head of the school district's special ed. dept.

I called the special ed. lady and left a message. She called me back yesterday, and I told her what is going on, and that I'm very concerned for his well-being. She agreed with me!!!!!! What?!?!?! Someone from the school district actually thinking a parent might know more about her own child than the school????? Can this really be happening? She said she'd be having meetings at the Beast's school all day and would discuss some other options with the principle there (the one who had just dismissed my concerns before).

One possibility is to put him in pre-k. This is what I've been asking for all along. Now all of a sudden they're giving it to him? I guess I'll take what I can get. Because the pre-k in Number One's school is full, he'd still have to stay at the school he's in. But, it's still an improvement. This class would have 10 "typical" kids in it, all over the age of 4. Then, it would have 10 kids like him in it. These kids have some quirks, but aren't your typical special ed. kids. And, here's the great part. It's being taught by the special pre-school teacher he's had for the last two years!!!!!! She is wonderful. The kid could spit nails at her, and she'd firmly address the issue, but never have him feeling bad about himself. She was supposed to have been a resource for the mainstream teacher who had him last year, but that teacher never would really listen to her. This year, she'd be THE teacher for him, so I know that what needs to happen would actually happen.

So, now I wait to hear what was decided yesterday. Regardless of what the school decides is best for him, his mother has decided that today is his last day in that classroom. He's not going back there. Period.

So, there's my long-winded whine. To anyone who has gotten to the end of this, you deserve a cyber brownie. I'm off to go fight another battle with the school...


Heidi said...

Remind me to never make you angry. Mama bear indeed. It's hard to imagine that schools treat students like that. I'm glad you're there to fight for him and get him what he deserves.

Jess said...

Oh my goodness. I simply can't BELIEVE the crap head start is pulling! I am praying for a good outcome, a loophole or something to get him where he needs to be. He is such a special boy and it is so wrong to see his spirit broken by those fools. Hang in there mama!

KAT said...

It just seems like it should never be that hard. Why can they not listen in the first place?

Anonymous said...

I hate it when school officials (or drs. anyone in authority really) dismisses us as mothers. HELLO we of all people should know what works for our kids.

Amber said...

My heart is breaking for you and for the Beast. This is all just WRONG! WRONG!!! makes me so angry!!!
I am impressed with your assertive actions! Don't give up. Like you said at the beginning...if you don't fight for him...who will?

Big hugs girlfriend!!

Nettie said...

You know, he really was meant to be your child. You are exactly what he needs. Way to be your son's best advocate, Mama Bear!

~moon said...

Totally check out home schooling!! it worked for me.. hehe.

I was just googlling around for home school in Texas. Check these out. They may help... (Texas Home School Coalition) and (specific to special needs home schooling)

wishing you strength to keep fighting,
kyla moon

heidi and tom said...

You are amazing, EE!! You are the perfect mother for him. Can you even imagine if he was born to an ill equipt mother who didn't know how to fight for his best interest?? He's blessed to have you!!