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.


farmwifetwo said...

You asked for my nickel's worth so don't complain when I give you an essay :)

Eldest has what yours has - mainstreamed. Which is fine for a child that now at 9 have NLD w/ S/L delay. That the psychometric testing that took 6mths of complaining - got the results yesterday - says he "has trouble walking and chewing gum at the same time". That says "he is academically doing better than his disability should allow him to do". That FINALLY after 5yrs got pt-time support - mostly b/c he FINALLY got OT again... but that's another story. They FINALLY put in a token program and it's working AMAZING. Score one for the kid. He... is not what you want to hear about.

Little boy is now in Gr 2. Little boy started SrK with full support, nearly no words and ABA was going... OUT OF HERE!!! WooHoo!! I let them do "transition to school..." for a variety of reasons that will take too long to go into here. Took the teacher 4 days - she called me the night of day 3 - before she tossed their ideas and 6 wks to toss them. And they rolled up their sleeves and got to work. He took part in all activities. He had a full pec binder that with support the EA helped him take his turn at all activities and by the end of SK was blurting answers during circle time, writing basic sentences, reading and spelling as well or better than his peers.

Comment at the end of year IEP mtg "we never thought he'd make such huge gains".

Gr 1 - Teacher that was afraid of him that appologized at the Xmas P/T mtgs for the typical ASD assumptions - little boy is happy, loves school and easy going.. no meltdowns. I had sent this book http://www.amazon.com/Autism-Acceptance-Book-Friend-Someone/dp/0975986821/ref=sr_1_5?ie=UTF8&s=books&qid=1223423768&sr=8-5 to school (I gifted it to their library) and the teacher and class took 2 days to discuss it. Then the PDD teacher helped the children take responsibility for him as well. The helper of the day - and he took his turn as well - was also his transition partener for the day. The Gr 5 and 6's - boys and girls - are his lunch helpers. He has an EA - same one this year - that too shoved him forward and again he made HUGE academic gains.

One tool he's used a lot is his Writing with Symbol's program at school. He has pt time, Speech, OT and PDD support plus full EA support in class. By Feb he was toilet trained as well.

The music program at the end of the year I was there for the practice in school. He had a classmate that dragged him all over the stage b/c the noise and lights were keeping him occupied - too bad since he knew all the songs, music is his fav class. At the end they were to curl up on the floor as cats and she forgot to drag him down with her... the place went quiet. He stood there, looked around and then started to clap and cheer.. there was a laugh and then the rest of the school did the same. It wasn't snarky, rude... it was a YEAH!!! and clap for him.

He's the school pet. Constantly out and about children of all ages come up to say hello to him.

This year he has an amazing teacher, and the same EA... he talks a lot.. still mostly mands but it's coming. We now do the "yes/no/mine/mine" fights btwn boys just like all other families out there.

And again... he's doing amazing. When they do story writing and other Language Arts tasks he does "what I did today", "thinking in I" tasks on the computer and his L/A is black/white. Read a story answer the questions. Q's are in words, A's in pecs to be glued down.

His reading scores at the end of Gr 1, were a Gr 2 level. He won't be 7 until Dec.

He also takes part in an inclusive private gymnastics program 1hr on Sat afternoons and 15min of piano lessons he has just started this fall Sat mornings 1:1.

You have to stay on top of it. You have to decide for yourself what your goals are. I also homeschool on top... so it's VERY obvious that they are being pushed at home. I do not volunteer in the classroom but I lobby, lobby, nag etc for classroom supports for the Teacher. She needs something it's MY JOB to get it.

I want to tell you it took me 1 day to do all this. But the eldest is now 9 and luckily, he was first and taught me how to play the game.


Amber DBTD said...

Wow. Just impressive.Thank you SO much for your comments and I will reply in depth tomorrow.