Tuesday, October 7, 2008

Inclusion... Good or bad?

Now, before I get all preachy, I will admit that it is possible that I'm completely insane and unfair and might possibly be wrong about my own child's school situation. Or, I could be right, and everyone telling me I'm nuts is wrong. Who knows. I'll let you all know when I figure it out.

Now. Inclusion. I'm torn on it, honestly. On one hand, it's great. Jaymes gets to be around typical children his age, and learn from them. He does not pick up annoying autistic habits that he did not have, but another autistic child would teach him. He can learn new words, learn games, all that good stuff. In an inclusive classroom, there is much less emphasis on the disabilities of the children in that classroom, and everyone is treated the same. Done right, I think that most kids would thrive and grow in an inclusive classroom.

On the other hand... In an inclusive classroom, one on one attention would seem to be more limited, as it would not be deemed necessary (I would think). Games and activities and lessons would be geared toward the typical children, and would be likely to fly right over Jaymes' little head. Activities like practicing letters are rather unfair, when you consider Jaymes recently learned to do decent circles, and his ability to make lines is iffy at best. He does beautiful scribbling, and I love his art.. But it is not at the level of practicing letters on one of those dotted line letter worksheets.

Another thing to consider is this: in an inclusive classroom, Jaymes is the odd kid. We've spent enough time at the playground to know that most kids are little demons, and treat anyone different like crap. For example, the one day a little boy walked up to Jaymes (who was cuddling a pink blanket on the playground) and started talking to him. When Jaymes failed to respond appropriately, the kid called said the following: "Why can't you talk? are you retarded? you're dumb. Why do you have that gay pink blanket? You're stupid. My shirt is better than yours because it has batman." First off, who the hell teaches their 5 year old to call a pink blanket gay? Geeze. Second, can't you see this same scenario playing out in the school situation? Jaymes is the kind of kid who does get teased- and he doesn't understand the teasing, and laughs with the other kids, then looks miserable when they walk away laughing about the "retard."Oh, and third: Jaymes had on a Spiderman shirt, and it was 100 times cooler than the stupid bat man one. Yes, Jaymes is the man.

In Jaymes' old school back in Florida, we were spoiled as anything. The class was 6 kids, all autistic, though the severity varied greatly. There were 3-4 adults. one special education teacher, who was certified with TEACCH and a ton of other Autism related stuff. She -knew- Autism inside and out. The aides were certified special education something-or-others, with training from TEACCH as well. He got 1-3 hours of one on one time per day, with the teachers or an aide. The classroom was called Communication Class, and was very very communication based. Everything was spoken, signed, and written. Jaymes learned and grew soooo much during his time there, and I guess I assumed all classes would be this way. I knew exactly what Jaymes did every day, I got a note that stated -honestly- whether he had a good, bad, or so-so kind of day, what he had done, and how speech and OT had gone. I got classwork from him that I knew he did, that he was capable for, that was appropriate for his level of development. He took his naps every time, he ate his lunch. He adored his teacher, and she adored him. She had to chase other teachers out of the room, because he was the smallest child in the entire school and everyone wanted to hold him and snuggle. (Ok, totally irrelevant, but so cute, admit it- you liked the story.)

In Jaymes' case, inclusion has been a joke, and his specifically Autism classroom was wonderful. The current situation is this... The teachers are as hostile to me as I am to them (yes, neither of us should be hostile, and I try to be friendly, but damnit, I'm going to ask the questions regardless of whether the teachers want me to or not!) and seem to take any questions from me as a personal affront to their teaching ability.

His classroom has alot more kids, not enough teachers. His teacher's assistant is the same one from last year, she knows her stuff but she tends to make comments about how Jaymes only behaves poorly for us because we let him get away with it and we have made him this way... Which is not entirely true. Sure, we've made mistakes. Everyone does. But he is this way as a result of a variety of things, and placing the blame squarely on our shoulders is not only incorrect, but it's unfair. I know I'm not perfect, I do my best and what I don't know I ask and try to research. I'm not one of those moms who dumps her kid off at school and runs off to get a pedicure, while wondering what the word "neurotypical" might mean.

The classroom does a morning circle type thing, and I think throughout the day they do circle time a few times. Then they have stations (playing house, books, toys, etc) that the kids rotate between with teacher time. I have two issues with this. One being that an autistic child does not benefit from wandering from station to station (ok, maybe some do. I meant to say MY autistic child doesn't), and two being that with that many kids, the one on one time cannot be more than 5-10 mins tops. Jaymes needs one on one attention all the time, to help him focus on the activity and actually get something out of it. I may be wrong, but my best guess of what goes on every day is this:

Jaymes gets off the bus, they do their circle time. Jaymes wanders away now and then and the bring him back. He probably participates very little, as making him would result in screaming (which they clai he never does.) They do their stations, where Jaymes wanders aimlessly until he either gets one on one time for a few minutes, or he does something to draw attention (dumps a box of blocks, for example) and gets redirected in some way. They eat lunch, they take nap. Jaymes apparently does not sleep, but does sit quietly (I don't know what to think there, Jaymes is usually a dead asleep napper, or a racing around the room while everyone else naps type of person.)

They say he never fusses or has meltdowns, which leads me to believe he is just not being asked to do anything. Again, I'm not saying I'm right, nor am i saying i want to hear that he's having meltdowns. I have not been able to go ninja and watch through some cleverly disguised nanny cam (and wouldn't you doubt my sanity if I did so?) to see what goes on. But I know from home time, grandma's house time, therapy time, and life in general, that if Jaymes is made to sit and attend for longer than 5 minutes, there will be tears. There will be yells, and there will be some sort of fight. I guess I just can't find it in myself to believe he transforms entirely at school. Is that even logical? Maybe I'm the crazy one. I hope I am.

I'd love to be wrong. I want to be wrong. I'm sick of being that bitchy mother who is always paranoid and stressing the teachers out. But I only want the best for Jaymes. I wish people understood this. I'm not out to cause teachers and therapists problems, I'm out to make sure things are going right for my child. I hate being a bitch. I hate confrontation. I get queasy and panicked at IEP meetings and when I deal with Jaymes' teachers. 5 years ago, I would not be able to do what I can do now. I do it because I have to. I'm not here to be best friends with everyone who works with Jaymes, I'm here to make sure everything done will in some way benefit Jaymes.

We are so fortunate to have three incredible therapists, who despite the struggles with Jaymes, have yet to give up on him. I hope they do realize that in spite of the screaming, Jaymes does come away from every session having learned something new. His speech has improved dramatically since he started with the ST. He loves listening to music, thanks to the OT. His balance is improving, and he is doing stairs and his tricycle much better because of the PT.

I do not see that in the school situation. Since our move almost a year ago, I have seen a steady regression. I've seen tons of language lost, skills lost, behavior disintegrating. It only started to improve again once Speech and PT were started. OT started recently, so I guess that doesn't count quite yet, but it will. Maybe this classroom isn't as bad as I think. Maybe it is. Who knows. But I'll tell you one thing- Jaymes needs better, and he deserves better and I will NEVER stop trying to get the best of everything for him. Maybe the school stuff will be solved anyway- one of Jaymes therapists said she'd go out there and observe at some point... I know she will be honest, and if she says I'm wrong, then I'll accept that and apologize to anyone I've annoyed with my worries.

Life has been very hard, and very draining for all of us this last few months... but you know, it is finally looking up. Despite the tantrums and new obsessive behaviors, despite now not being allowed to hold Jaymes' hand at all without a fit... Despite it all, he is learning. Slowly maybe, but he is. With the right help, he could really flourish.

Sunday, October 5, 2008

Read this, it's great.

From Autism street, found it through my Site Tracker. I guess people came here from there. Anyway, it's wonderful.

The Joy of Autism

For the most part, I like what Estee has to say about things. Her posts are well thought out and usually pretty on target. She runs the Autism Acceptance Project, which is actually a very interesting site.

On one hand, I love her message. That we can love our children for who and what they are, that their Autism is a part of who they are. That to some extent we need to accept their quirks and difficulties, and learn to love them for it. She preaches inclusion, which I also think is good, in the right circumstances. Her son Adam is largely nonverbal (I believe), and communicates best through typing or writing. I've read some of their "conversations" and they were haunting, yet beautiful. Amazing to me, anyway.

On the other hand. I don't think that accepting Jaymes' Autism and stopping therapies would be wise. I do not think Estee advocates that though, but some of the folks over on the TAAP message board do. I'm all for acceptance, but some behaviors I will not be so accepting of- biting, headbanging, self injurious behaviors pretty much. As for the inclusion aspect. Inclusion is great, if done right. But take a look at a typical preschool "special ed" inclusion type classroom. 14 kids NT. 3 on the spectrum, some high functioning, some low. 1 Autistic kid. The ratios seem very off to me, for one thing. For another, what happens in a lot of these classrooms is, the NT kids get taught. The Autistic kids wander aimlessly around the room, and as long as they are quiet and sdon't cause disruption, all is well. This is where inclusion is a failure. I would rather have my child in a purely Autistic classroom, actually learning, than in an inclusive class, not learning.

Overall, I enjoy Estee's blog very much, and though some of her posts are way too long and full of looooong quotings, I highly reccomend it.

Saturday, October 4, 2008

The good, and the bad...

Sometimes, one just needs to take a look at the good and the bad in one's life, in list form. It's a good reality check.

The bad:

  • Jaymes' aggression and constant whinnniiiiinggggg
  • Sierra's hitting and biting
  • My marriage
  • Money
  • My health

The good:

  • Jaymes is learning new things every day. He knows his colors now, and the whole alphabet
  • Sierra is the happiest, cutest baby on earth. 'Nuff said.
  • I'm meeting up with some great writers of Autism blogs, learning a ton, and having fun with my writing
  • My blogher ads thingy got accepted
  • Buddy is nice and shiney and healthy.... His weight is really almost there
  • Our new car is wonderful
  • Jason's new job pays a lot better, and we are catching up on our bills
Oh, and the kicker? i forgot to mention this.

OUR CH13 BANKRUPTCY IS DONE. DISCHARGED. POOF. NO MORE. PAYMENTS ARE DONE. NOTHING ELSE.

Friday, October 3, 2008

Poor Sierra

Sierra had her 2 year well check today... She was sweet and giggly and smiley and happy right up until the bad stuff.. She needed her MMR and Hep b shots and, she needed blood drawn.

They did the blood first, and she was such a little trooper. Not a cry at all. Then the vaccs. She screamed for the MMR, that one stings. She also had the flu vacc that goes up the nose. She also needed Hep A, but I elected to do that in a month. Hate to overload her with so many at once.

So, anti vaccine lunatics... We shall see if my daughter, who has just been evaluated by Early Intervention and pronounced entire "normal", "neurotypical" or whatever else you'd like to call it... we'll see if after having her MMR, she magically becomes Autistic. And if she does, I'll make a formal apology.

But I don't think I'll start writing out that apology just yet.

Anyway, baby girl is tired, sore, and fussy... But she's safe. And thanks to those of us who DO vaccinate, the rest of your kids are going to be less likely to die of one of the godawful illnesses you decided were better than Autism.

-end bitterness-

Thursday, October 2, 2008

Another EXCELLENT Squid Post

This one is a must read. Seriously. And Jenny McCarthy is a pain in the ass. Click the link here and read Squid's excellent post.

People like this piss me off royally. The majority of kids do not "recover" from Autism. They learn to cope, to live, to function. Learn the skills that makes life easier for all involved. They also generally do not one day get a fucking therapeutic foot bath and magically become "normal." And why the hell would you even want to make your child into your idea of "normal"?

This recovery crap makes it sound like Jaymes is broken, like he's diseased and needs to be fixed. Sure, he needs help, we're working on that. But I don't want to turn him into some little clone of what I think a "normal" child should be. I love Jaymes for who he is, meltdowns and odd behaviors included.

As for Jenny's situation, it's awfully easy to lecture people on how your child can be "recovered" if you do this, this, and this... She isn't living off $1000 a month, scraping by to pay bills and basics. She's got a ton of cash to throw around for every treatment option she can find, and some things that I would not consider treatment at all, but bullshit to make cash off of desperate parents. (Why hello, crazy chiropractor offering vitamins to cure Jaymes and therapeutic foot baths to cleanse the autism right out of him- you dumbfuck)

Parents, please vaccinate your kids... Please don't let the rabid ignorant misinformation of the crazy anti-vaccine folks convince you to forgo vaccinations. If you're concerned, do it slowly, over a period of time, but do it.

Wednesday, October 1, 2008

Magnetism is a funny thing...

It's funny how often I meet other parents of special needs children like Jaymes, when we go to the park. It's like we're magnetically attracted or something. The other day I took the kids out, since I had my mom's car on loan. We met K. and his friend/mentor P.

I don't know K.'s situation, I thought maybe Down's Syndrome, but I'm a cruddy judge of those things. He was maybe 15? I'm also bad with ages. He had a baby doll (aptly named Baby) who he kept putting on the tunnels and slides, then playing for a bit, then playing a sort of hide and seek to find Baby. It was really sweet, and funny at times. He'd pop Baby's head through a window on the tunnel and burst out laughing, and Jaymes would crack up too.

Later on, K. decided to push Jaymes on the swing. I was a little nervous, because Jaymes is tiny, and none too steady on the big swings, and K. was a little overzealous pushing him, but Jaymes loved it. He did eventually fall off the swing, but the ground was super squishy rubbery stuff, and he laughed as he plopped on his belly.

I think it's interesting to note that until Jaymes and K. met up, they were both playing alone (or with their companions) and ignored or given odd looks by the other kids. Admittedly, K. did have some odd behaviors, and that look to him. We are fortunate (or unfortunate, perhaps) that Jaymes is, physically, "normal" looking, and so does not get teased or tormented the way a child like K. could be. Anyway, the kids loved each other, despite the huge age gap. We're going to try and meet up more often at the park.

Here is the video. Mind you, his fall looks awful, but he popped right back up giggling. It wasn't nearly as painful as it looked, apparently.