IEP Aftershock

The meeting went pretty smoothly. The school OT kept her mouth shut, but also offered no actual goals. She managed to put her name on something so she can be put down as a consult, but that's probably just because she'll be in teh classroom anyway; I suspect she has to clock her time or something, so the more "consult" she has, the less actual work she has to do. But perhaps I am being ungenerous.

Anyway, we got some goals, mostly social interaction and language stuff, and we've got the good teacher. I'm going to chat with my private OT, who went to the meeting, abotu the OT situation before I sign this thing. I'm not crazy abotu having the school OT messing with my child, but I'm also worried about having direct OT off the books, and maybe he needs some goals that got swept under the rug?

The new administrator is a no-nonsense, get it done kind of lady. This made the meeting go at lightning speed. Another reason to not sign anything- what didn't get discussed, because we were distracted by pre-drafted goals and the march to signatures? We're in no hurry. The teacher I already know is the best our system has, and we seem to communicate OK. The new SLP seemed OK, and friendly enough. So this might be OK. That would be nice. We'll see.

The new team was very interested in a powerpoint I put together about Joey. It's a little too detailed to be posting on a public blog, but mostly I used Kristina's (Autism Vox) suggestions to put it together, so that we could communicate how we view Joey, the role of the school in his education, and highlight his strengths and abilities instead of the deficits- since most of these meetings dwell on goals for thigns he isn't doing so great with. The preschool staff would see my computer and roll their eyes. These new people wanted printouts to distribute to the staff who would be working with Joey- all of it. There's an interesting change in pace.

One thing that kind of bugs me is the whole system made manifest by the meeting was clearly geared to absent parents. It was like a great machine, and you either said yes or no. I wonder how much of the smoothness is because someone has told people to back off, or if they've just figured out ways to keep me at bay, so I have to go home an dthink about what actually happened and whether it is worth hiring a lawyer and checking everything top to bottom. Or maybe they know I'm likely going to do that anyway, and just aren't going to put out more energy than needful. Or are these new people more efficient, being used to having lots of kids show up at kindergarten with no intervention and disinterested (or overbooked) parents? Or did someone put a fire under someone's butt and tell these folks to start at least appearing to obey the law and quit making fusses? We've had so much trouble, I am still inclined to be suspicious. I want to know what is going on for there to be such a dramatic (apparent) attitude shift. But for now, I'm jus going to go over the IEP with the proverbial fine-tooth comb and start from there.

Shame we dont all live closer so we can get together for an IEP party and pull apart each other's IEPs and ask questions and stuff. :P

One of Our Fears

We live in fear of this all the time.

As we prepare for our IEP, we also prepare to answer for that most heinous of suggestions: that Joey does not need service and support because he is "high functioning."

Yes, Joey likes to interact with peers. He hasn't a clue how to do it, but he really, really wants to. He doesn't have the language to carry a conversation, or to respond to another child's request within play (he can answer "Do you want to play?" but when asked "Want to play superheros? Want to be Superman?" we are definitely out of Joey's element.) Joey can count, he can name colors, he can write his name and read a few words. But can he ask a question? Can he communicate his needs? Can he engage in social conversation? Can he, in short, function?

And until he can, why call him "high functioning"?

Presents

I got the presents: beautiful faceclothes and shower gels all around. It took me half an hour to pick out the clothes. Some of the other shoppers were laughing at me rummaging through the towels and touching every single cloth- but the point was to find the ones that were thick and lovely. No one needs another cheapo yucky facecloth. I gave out massagers last year, so this should work fine. A little spa treatment over summer vacation.

I was even nice and got one for the school OT.

On the upcoming IEP meeting

This morning I plan to go shopping for end-of-year presents. I'm not sure what I'm going to get. Usually I have something in mind- but this year, I'm a little aimless. It isn't like these people have been wonderfully helpful, friendly, or even polite. They've done little for Joey- he's doing The Very Hungry Caterpillar for the third year running, and is bored to tears, and they wonder why he's being uncompliant and argumentative. When I ask questions, the first response has been "We're professionals; why are you asking questions?" I feel like Harry Potter trying to talk to Aunt Petunia.

I'm not ask stressed as usual about the Friday meeting. Maybe I'll start freaking out tomorrow. There's really no point. I have the OT coming with me, and the kindergarden teacher has said she will also come- I think it is silly that the next teacher wouldn't be automatically included at this meeting, since she is the one who needs to understand the IEP. But I got that fixed, she's coming. I'll do what I can. And if there needs to be more, I'll call another IEP. I may hire a legal advocate for next year, but we'll see how these people deal with it. I'm kind of ooking forward to having a mostly new team- though I get to keep the most problematic member of my current team. Hooray! That's why the OT is coming with me. I'm not the only one unhappy with Joey's OT goals.

Tonight, I'll comb through the reports we have and put together things that need to be addressed. And we shall see what they feel like addressing.

Warm fuzzies all around

Joeymom -- [adjective]: Fuzzy to the touch 'How will you be defined in the dictionary?' at QuizGalaxy.com

Shhhhh...

I was awakened this morning to two little boys in my bed, bouncing on it. When I opened an eye, I got two little kisses, and a chorus of "Shhhhh... Mommy's sleeping!"

Signs

Joey had a good speech session today. He's learning sign language. This will give him visual cues, to use when he cannot find words, or for us to use to better communicate with him. HIs favorite sign is "fox." Today, he and Nikki were doing some other things, including looking at some Richard Scary books. He turned to her and signed about what he saw on the page: "The fox ate and ate until he was full!" When Nikki said these words he said, "Yes! That's right!" and laughed, and then repeated them.

I still think most of Joey's speech is scripted or echoed. I usually use "scripted" to mean that he knows what the words mean, and is trying to use previously-heard strings of words to convey meaning, sometimes quite successfully. "Echoed" means the words are empty, repeated because he has learned they are a proper response, but doesn't know what the exchange means; or he just likes the words and says them, perseverating on the sounds; or he is too upset to be able to recall the words he needs, so he repeats back anything his brain clings to, regardless of meaning. He is clever enough to sometimes mix strings, so that one half of the sentence is pulled from Little Bear while the second half is from Pinky Dinky Doo, but they are still just blocks and strings of words he has heard before.

The signs seem to be doing several things for Joey. They give him a visual cue, so that slow sound and language processing can be slightly bypassed. He understands what you are asking of him or telling him. They are also providing him a way to communicate spontaneously, without having to come up with spoken words. He gets very happy about this, like talking about the fox in the picture. He doesn't have to come up with scripted words for a new situation; he can go with signs, movements that he can apparently access better and faster.

So when Nikki was having a hard time getting him to sit an attend, she finally signed her request: sit please! He saw the signs, suddenly lit up, said, "Oh! Sit, please!" and sat down.

Sign language will probably never be Joey's primary form of communication. He speaks very well, and he's well on his way to reading. However, he seems to like it, and seems to be helping him catch on to concepts, and we;re going to try to focus on giving him signs he can use to talk to us, instead of a bunch of signs for us to boss him around with. He's so funny, sitting in front of a mirror, signing "fox" to himself and giggling. I need to get a mirror put up in his room.

Dinosaur Matching

Andy does not like to nap. Recently, we have decided to just feed him at 5 and put him in bed instead of trying to get a screaming mass into his room for a nap after lunch. He needs this because if he gets grumpy, he tends to hit first and ask questions later. I would work on a 2pm nap, which would work very well, except that I am rarely in the house at 2 o'clock because of Joey's therapies, and will not be in the house at 2 o'clock all summer long.

Taking him up at 5 includes his bath, where he misses his brother, then stories. IF he is still awake at 7 when we bring up Joey, he gets another story. They usually involve dinosaurs or Karma Wilson. I also have some fabric books I've sewn up, which he often uses as pillows.

As part of the dinosaur fascination (infatuation?) I have pinned up some pictures of dinosaurs on Andy's room. A good friend sent them to us a while ago. Andy was absolutely thrilled when he saw them. He likes to point at them and tell me what they all are- and since I have learned what they are, I can decipher his attempts at articulation. Practice makes perfect, right?

Yesterday I put Andy upstairs with some stories, but all was not well. Andy started to really lose it, so back up the stairs I went. What was wrong? All I could decipher was "Edmontonia!"

For those of you who may be dinosaur=challenged, and edmontonia is a type of ankylosaur- a tankish, armoured thing with shoulder spikes and a clubby tail. It happens to be one of Andy's favorites. He held out the fabric book I made, based on postage stamps of dinosaurs, open to the edmontonia page. He was inconsolable.

I went into the room and sat with him as he tried to explain the problem, in sentences that were completely unintelligible despite beautiful and meaningful inflection. Edmontonia... t-rex... allosaurus... diplodocus...

Then I realize he's pointing, not just waving his arm. I look down at the book. Then I look up at the wall, where he is pointing at the pictures. Though the backgrounds are different, the actual dinosaur is the same- the pictures are probably the stamps, and the book takes the dinosaur, and photoshops it into a brighter jungle backdrop. However, not all of the dinosaurs on the wall are in teh book- and vice versa. Edmontonia is in the book, so he is looking for it on the wall- and it isn't there.

Good news: Andy is matching!
Bad news: I have no idea where to get a picture of an edmontonia, much less the exact one in his book, to put on the wall.

Slumber Party!!!

It is bedtime here. Usually that means time for a fun bubble bath. Joey likes spraying his own hair and shampoos his own head, and will even now brush his own teeth (we do this in the bathtub, because I introduced the new spinning toothbrushes there when I thought sure they would be a flop- but they are a hit, and now toothbrushing is part of a bath. As long as the teeth get brushed, what harm is there?). He usually complains that the water is too hot, but otherwise happily splashes away Joey loves water. The other one screams about any water touching his head, likes the head rub as mommy shampoos the head, then screams again for the rinse. He then does his best to drink as much bathwater as he can before being removed from teh tub to complain about being wet. Andy likes water, as long as he doesn't notice any on him. (Remember, Andy is supposed to be my NT one...)

We then get into pajamas with much help from mom (remember trying to put on pajamas while damp?) and have a story. We managed, barely, to get through Charlotte's Web chapter-by-chapter; usually we just do a picture book. Then a rousing rendition of our favorite bedtime songs, including Old MacDonald's Dinosaur Farm (how may dinosaurs can you name and provide a sound effect for?), and then we separate to our rooms for bed.

Unless we declare Slumber Party.

Slumber party is declared when Joey, who usually insists someone (meaning me) remain seated in the chair in his room until he falls asleep, dismisses said parental unit with a firm "Mommy go away now." Then I am stared down until I get up and leave. Joey then starts his CD player, and the fun begins!

First, Andy must be released from his room. Then there is a jolly time of squealing and flopping into bean-bag chairs and joyous jumping on beds. usualy a tickle-fight is included, a well as occasionally checking on the parental units in their room (to be sure they are still safely installed at their laptops.)

Sometimes we get surprise kisses, or a boy coming in to "scare" us, or other fun games.

When it gets dark, it is finally time to settle in and go to sleep- the slumber party is over.

Sometimes its fun to think you are getting away with something.

Invited to play

We have a new, wonderful game here- Playing Cars. Joey gets out the little road/runway thing that came with a Fisher Price airport, finds some of his cars, and then gives one to Mommy saying, "Come play cars, Mommy!"

Intiiating social interaction. Appropriate language, appropriate play. And he's figured out that if he does this, the world stops and Mommy gets onto the floor and plays cars, even if she was cooking or working or doing some other thing Joey prefers I didn't do. Andy grabs a car, and there are the three of us, crashing cars together, or racing them, or just driving them around and getting our arms all tangled.

Sometimes the cars even talk to each other. Joey stops his car in front of my car and says, " Hello car, I'm Joey!" and Joey the Car makes a new friend.

Now that, my friends, is a miracle.

When to speak- what to say

I have two very important opportunities to advocate generally for autistics. I am the chair of the Parent Advisory Committee for our local special ed system, and I am also on the committee that is supposed to be training school personnel about autism. No one who is actually autistic is on either of these committees, yet both have a good deal of power over the lives of autistic children, and even some autistic adults (special ed can rule your life until you turn 23).

I have a friend who was appointed the chair of his department. He took it as the huge honor, that everyone must think so much of him. Itried my best to tell him that being chair of a department is not an honor- it often rotates like a hot potato among faculty members- it is an opportunity. You have your chance to do things your own way, to get your own ideas heard, to get things you think are important on the agenda.

Being chair of the advisory committee and being on this autism training committee are similarly opportunities. I can stand in front of the school board, the superintendant, the director of student services, the principals, the teachers, and say anything I want. Here is an opportunity- and a rsponsibility, What do I say? When do I say it?

So far, my message has been "disabled people are, first and foremost, people." When asked about curing autism and what stance the school should take regarding autism, this has been my answer: Autistic people are people. Treat them with the same respect you expect to receive. They have the same right to be educated that any non-autistic child has. They need the same opportunity to be independent and socially responsible that any non-disabled child has. If a normal child had trouble in reading, you'd provide tutoring, right? So what's the problem with providing the support a disabled child needs to succeed?

This message seemed to be supported by autistic people I knew in person, and was certainly supported by the other parents I know in the system (though admittedly, both are not extensive groups of people, and may not be respresentative.) This is the best I could do... until now.

And now I ask you... now that I have readers who are autistic, raising autistic children, been through the special ed system, and have a wide variety of persepctives of the message to send- if you have the ear of of all the powers-that-be of the school system, what would you say? (Politely, that is?)

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