Wednesday, September 27, 2006

My Child is Disabled.

I had to tell a client that today. Because I've been, well, unresponsive. I've been out of the office and not returning phone calls. My boss had already explained that I'd had a sick kid, and was out. When she talked to me, she said (I might be projecting here), forcefully and so not all that sincerely, I hope your child is over his cold. I had to correct her. No, Client, my son is disabled. And he's not better yet.

***

So, some updates. Because the school trampled on my rights as a parent, told me what I was signing was "informal" and "just a record that [I] attended this meeting," and that was a complete lie, I am currently shopping for an SIED classroom. Because he must be placed in an SIED classroom, as what I signed was as formal as the constitution, and their recommendations, however contentious, are currently the stone tablet of The Kid's current educational plan.

Now, before you go and find out what school The Kid attends so that you can throw eggs at it or whatever, I am going to go along with this decision. I'm willing to change his placement because it means that he will get the hell away from the Social Worker Pro Tem, who I'm fairly certain is the spawn of satan, and The Principal, whom I can no longer look in the eye directly because she so completely betrayed my trust. They don't want to teach The Kid anymore. How could I possibly want them to teach him, then? If The Kid's behavior necessitates it (like I think it might), I can request a formal review of the IEP at any time. It's a lot more tricky than that, but I'll not get into all the legal bull-oney quite yet.

But the SIED classroom. Sweet Jesus.

I went to the one that they chose for me. I have two major complaints that tell me this school is absolutely unacceptable for The Kid.
  1. They are using goddam fucking sticker charts. (Plusses and Minuses! Add Up Your Points At The End Of Each Day For Skittles!!! Motivate them to behave better! We're not just teachers, We're CHEERLEADERS!!!! If they're real good, we'll bake 'em cupcakes and hide 'em in their lockers!!!--Oh, seriously, sorry for that) I hate the sticker chart because we used this on The Kid for two years and it was only disastrous. It provided good data, but when he was involved in the "points," or "smiley/frowny faces," a 5 minute tantrum turned into a 30 minute tantrum, because he'd get upset all over again when time came to record the negative behavior. And in the end, that's not teaching better behavior. I hate the sticker chart thing because what these kids with psychiatric disorders that inhibit their ability to react to bad news or control their impulses when presented with frustrating situations don't need is to be set up for more tantrums. I thought that was one of the major reasons he was being put in SIED. When I expressed (kindly, for real) my distaste for this kind of charting because of bad results and further reading I've done [Greene, Ross; The Explosive Child], the SIED teacher said, "Well, all of the kids in this class do these, and don't you think if the other kids were doing it, he would want to do it too?" Um, The Kid will not be attending here. Peer pressure as behavior plan doesn't work for me. Especially since in 10 years, The Kid will still be bipolar and I'm already terrified of peer pressure then and the comorbidity of bipolar with substance abuse. Plus, I totally squandered an opportunity to say to this teacher, "Well, if all the kids wanted to jump of a bridge, do you think The Kid should do that too?"
  2. The kids. Six third-graders. A second-grader and first-grader each. That's the population. One of the kids pointed at me and said something rude. Another kept banging his head on tables and walls. This is so absolutely horrifying, I can't imagine these kids as The Kid's peers, even if they have the same diagnoses. Apart from the emotional reaction to seeing disturbed kids, the heavy weight of older kids in the classroom bothers me, legitimately, I think. Most of The Kid's problem is social, the last thing he needs is to be around bigger older kids with emotional disabilities (at least, when the bigger older ones are in the majority). There's got to be some learning of bad behaviors that would happen.

So, The SIED class was disappointing, to say the least. I think it will be a big fight to talk about a different placement, but shit, I will do anything to keep him out of that particular program. But, who am I to be judgemental of the behaviors of other children? My child is disabled too.

***

My child is disabled. Do you know what's worse? He looks it now. We've overmedicated him since last Friday. I went to the doctor today with major concerns about side effects from all of these new drugs he's on. He's drooling. He can't fall asleep. But most seriously, he's complaining of muscle stiffness and is doing this scary arm-stretch and back arch that looks postively palsy-ish. He does this back arch thing and the sticks him arms out at about 45 degree angles from his sides and then moves his thumbs and pinkies together, and sticks his other three fingers on each hand down toward the ground and stretches, showing of his double jointed elbows. It kind of makes him look like the typical "retard." And it makes me sick and sad and guilty and regretful and horrible. The doctor stepped back his meds, prescribed a drug to counter act these side effects, but the fact that he's so filled with little synthetic inhibitors and receptors and atypical anti-psychotics and stimulants just slays me. I can't even write about how that makes me feel.

***

I always think I've got this thing together, that I'm getting tough. But don't let that fool you. Every day, my lifelong dreams of being a parent to my very own baby die to the reality that we're facing. And I can lie and say I wouldn't have it any other way, but the truth is, I don't want to have a disabled child. I want a healthy, happy child. Right now, I don't really have either of those things in The Kid, and it hurts so much. It hurts the most because I know all he wants is to be happy and healthy, and I'm the only person on this earth equipped to fight for those things to happen. No matter how hard I fight, it might not happen. What if he can't get it together and he spends the rest of elementary school in SIED? And what if in 7th grade he and his SIED buddies find out that smoking pot and drinking vodka make you feel a lot better than the pills mom makes you pop every morning? What if he's in for a struggle for the rest of his life? The fear of those things can really suffocate a mother.

I'm in mourning tonight. I'll get better, and I know that The Kid will too, eventually. I truly, honestly hope so anyway.

4 comments:

Diane said...

Molly_g,

Hang in there.

Alison said...

Oh, Molly. I don't really know what to say, but I felt like I should say something. I'm so sad for you guys. Can I do anything to help out?
-A

mr. lady said...

Oh, honey.

Oh.

I am so sorry, for the Kid, for you,

ugh.

I love you.

Jennifer said...

I don't know you, but as a mom of a disabled child as well, I am mourning tonight too...tonight..I am sick of this kid. tonight, and probably, just tonight because we are not allowed pity parties for long, I will sit and cry and wish my life was different...but, tomorrow, it will all just be the same...
yep..pity parties for all of us...we can do that every now and then...
I've been doing it for 14 years..and, it just gets worse...sucks huh??