Yet Another IEP Meeting, Yet More Thoughts on EI

Charlie's off on a bike ride Charlie having been at the big autism center (BAC) for exactly 30 days as of yesterday, we met for his IEP meeting. I'll have more to say about it, but two things immediately stood out to me, especially in thinking over the push for Early Intervention in the form of intensive ABA.

"Intensive" often means "one-on-one"—means a 1:1 student-to-teacher ratio, not only (as 'tis said) to provide individualized teaching and attention, but also to "redirect" a child to have "appropriate" (i.e., self-stimulatory behavior-free) behavior as much as possible. It's the case that, at the BAC, the ratio is 2:1 (students to teacher). Our initial thought was that this would not work out for Charlie, who's only been in 1:1 settings since he started doing intensive ABA at home when he was 2 years and a couple months old. 

In reality, even with—despite–because of?—the different student-to-staff ratio, he's done fine and, possibly, better. By comparison, in his former in-district public school self-contained classroom, there were 4 students, 4 aides, and one teacher. At the BAC, Charlie's class has 6 students, one teacher, 2 aides. However, there are also 2 aides in training in his room right now. Along with the speech therapist (who works with Charlie in his classroom), there seem to be plenty of people around at any one moment. The BAC's director, who was at the meeting, also noted that not having someone constantly watching him might decrease Charlie's anxiety level, rather than the opposite (something that others have pointed out, too).

Charlie's years of ABA and discrete trial teaching (DTT) also came up when we talked about his speech and communication. We talked about his yes/no confusion; about how he often says "no" and then, after a pause, says "yes" to something. The director interceded that something else that might be going on is that Charlie, again after years and years of ABA and DTT, thinks he has to respond immediately; that, to some extent, he has been over-trained to respond immediately. That made a lot of sense to us, as we reviewed the myriad "trials" Charlie has done and the emphasis on him responding quickly and especially, too, when he was working on verbal imitation and other speech/talking programs.

I don't mean all of this as blanket criticism of ABA. Charlie's current teachers noted again and again that he came to the BAC with lots of skills, pre-vocational and otherwise. It's also due to all of that ABA that Charlie is what would be called very "compliant," attuned to following directions, aiming to please, wanting to learn. I'm not doubting Early Intervention (EI): The educational foundation that Charlie got from the time he was a toddler has stuck with him over the past ten, often rocky, years.

That is, I'd like to see a de-emphasis in calls for EI because it's said to provide a child with the best chance for mainstreaming, for a "normal" life, for "no more Special Ed." We heard these claims over and over again when Charlie was younger. While EI has helped many a child to achieve some or all of those, it was not going to do that for Charlie, whose struggles to communicate and speak and with whatever's going on with his neurology have been a part of his, and our lives since he was (we realize now) a baby. Having that good educational foundation has helped to carry Charlie through times when his behavior problems have taken over his learning and his life, and, too, ours.

At the meeting, we also reviewed a plan to fade out the wearing of the helmet. We went over a list of ways to help Charlie when he's upset, including the use of a "safe" area; any sort of restraints are a last resort and we are (as we are now) to be informed on the same day about these. (We had this proposed legislation in mind throughout, and mentioned it.) Charlie will first not wear the helmet in the cafeteria as he's done well there. Indeed, it was noted that Charlie is one of the kids who does very well in a place full of so many children and aides, and so over-stimulating with the noise, smells, and all.

Jim and I were more than a little strung out after the meeting. A bike ride (it was slightly warmer yesterday) helped.

And, too, the knowledge that we've all stuck together through all this, through the 12 years of Charlie's life, and—for Jim and me—since we got married 14 years ago today.

Happy anniversary, Jimmy! with much much love on the long road, always. xox.

15 Responses to “Yet Another IEP Meeting, Yet More Thoughts on EI”
  1. chrisd says:

    Happy Anniversary!
    IEP’s are always so stressful. It sounds like at least someone on your team is watching out for him. Wonderful!

  2. Shannon says:

    Happy anniversary! We just had our 14th, too. And I just rounded the 40th corner, as well. Damn. It’s like looking into a mirror!
    So glad you have a plan to fade out the helmet.
    It’s always intriguing to me (and to Leo’s home program supervisor) how different ABA approaches can be. Our regional center recently assigned us a behavioralist, and while there was some overlap with our existing program, he had many other recommendations — good ones — that I’d not previously encountered. And Leo’s home program is amazing — he’s had the same ABA program supervisor since he was 2 1/2 (he just turned 9) and she has always stressed Leo’s need for a couple of beats to process, on not pressuring him to respond immediately. Yet all these approaches are ABA.
    Hope your post-IEP strings have loosened somewhat.

  3. emma says:

    Happy anniversary!!
    Sounds like a good IEP. Interesting about the yes/no confusion, the director may be on to something. It also occured to me maybe Charlie is giving a very fast no answer assuming he is being asked to do something he doesn’t like, before he has had a chance to process what has been asked? (Dimitri occassionally makes a pre-emptive strike before I’ve even got a word out).
    I agree with you EI should not be “sold” as a chance for mainstreaming, in reality all forms of EI, and education in general, are there to give kids the best chance to reach their full potential, what ever that may be.
    Great news that there is a plan to fade out the use of the helmet!
    Hope you have a great day!!

  4. bonnie says:

    Happy Anniversary…. and please soak up the loveliness of having a pleasant and positive IEP! What better gift! I’m so glad your boy is doing well!

  5. farmwifetwo says:

    We’ve just crossed 11, but have been together nearly 15. Happy Anniversary and many more.
    We had ABA with DTT. It was HORRIBLE. Harold Doherty claims those of us who complain about it are lying or something…. Problem is, there is as many forms of ABA as there are practitioners so claiming ABA works… is also a lie.
    I think early interventions are necessary but should be tailored to the child. Just b/c you have a “plan” doesn’t mean every child is going to fit that plan. That’s their biggest flaw. These “so called” autism specialists can’t see the child and assume they are all the same. We’ve had much better teaching from OT’s and SLP’s, they are flexible in their ideas.
    Those with autism make the same assumptions. This seriously pissed me off yesterday To claim that my Autistic son, should stay home, that he preferred to stay home, that he should want to stay home… Who do they think they are??? Mine loves to go out. Mine wants to play with other children. Mine loves everything from swimming lessons to a fall fair midway…. To claim otherwise is IGNORANT at best. And mine is barely verbal and full autistic disorder and SOCIABLE!!! But then again… it’s why I don’t respect those who have autism that claim to speak for others who they know nothing about.

  6. J says:

    Happy Anniversary. Glad that the meeting went well, and Charlie is doing well.

  7. J says:

    Happy Anniversary. Glad that the meeting went well, and Charlie is doing well.

  8. Niksmom says:

    Happy anniversary and happy productive IEP as well! Love the plan to fade the helmet. I think, despite the initial sting and anxiety, this move was a very good one for Charlie and will be good for you and Jim, too.

  9. karen d says:

    I am so happy to hear how wonderful this new school is so far and that a plan is in place now to fade out the helmet. Excellent news!!!
    I don’t understand how people would expect a person who may have trouble processing information to respond to questions immediately. My Pete, who is very verbal, mostly cannot give an immediate response. He needs a good 10+ seconds to process and then he can usually answer. I can see why Charlie has adapted to making quick responses just to get the interaction over with.
    So glad he’s someplace more appropriate for him now. I agree that not having someone breathing down his neck all the time is probably part of the reason he’s feeling more peaceful at the new school. Great strides toward more independence. xo

  10. VAB says:

    Sorry to hear about the stressful IEP. I certainly can relate.
    You know, as you have been describing Charlie’s yes/no thing, it is so familiar that I thought about mentioning it before now. And when you observe that what might be going on with the first “no” is a desire to respond quickly, that sounds exactly right to me too. But our guy has never had any ABA. We see it as a wiring issue. Questions cause stress just because they are a new processing demand requiring a shift away from whatever processing is going on (for our guy, it is the first question that is difficult, in an ongoing dialog, individual questions don’t get the automatic “no” response). “No,” is often the safest response. We also get a lot of “I’m sorry” as an initial response. We see these as reflex reactions for intimidate rejection/dissipation of the stress load. After our guy has had a chance to think, we will get a real answer. Sounds, pretty similar, doesn’t it. It’s interesting because our guy, in conversation, is now almost indistinguishable from his NT peers in terms of vocabulary etc. So we are not talking about a language issue per se, so much as a processing difference.
    If the question is important, or our guy is stressed out, or we are really hoping of a yes, and we have time, and have the presence of mind to remember, we will prime him for questions. When he was younger, I used to go up to him and stroke his arm. Nowadays I do small talk with lots of pauses:
    “Hey buddy….”
    “How’s it going?”
    “Yeah, cool. …. Dinner should be good tonight. … By the way…”
    This is a lot of work but, by starting with a neutral interaction and engaging the clutch slowly, so to speak, we can engage with our guy’s actual consideration, rather than is stress defense mechanism.

  11. Louise says:

    Happy anniversary! You have done a phenomenal job of working through all the stresses of not only marriage, and a marriage in academia, but marriage in autismland.
    I hope the Romance only keeps getting better for the both of you.
    And congratulations, too, on an IEP that doesn’t raise the blood-pressure, but is an actual positive teaching tool. Peaceful easy feelings to you all.

  12. Louise says:

    Happy anniversary! You have done a phenomenal job of working through all the stresses of not only marriage, and a marriage in academia, but marriage in autismland.
    I hope the Romance only keeps getting better for the both of you.
    And congratulations, too, on an IEP that doesn’t raise the blood-pressure, but is an actual positive teaching tool. Peaceful easy feelings to you all.

  13. Liz Ditz says:

    Happy Anniversary!
    Happy peaceful, effective IEP!
    I like VAB’s image of engaging the clutch slowly

  14. autismvox says:

    thanks to everyone!
    the clutch, mmm, i gotta work on the slowly and gradually….
    @Shannon, talk about coincidinks!

  15. mamacate says:

    Happy anniversary! More and more good stuff, it seems, with the BAC. So good to hear.

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