My Family's Experience with Autism

This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).

Tuesday, May 10, 2011

Is There EVER a "Right" Answer?

You see, we have a problem (what else is new?). Rachel's IEP Meeting was October 17. At that time, it was decided that she should be included in a typical pre-K class in her school to allow her to work on her social skills with her neurotypical peers. This would help her learn how to interact with others and would hopefully allow us to see her enter a typical kindergarten classroom setting at best, or at least allow her to be placed in "The Learning Center", one of the special education options for our public school system.

In our opinion, social skill development is the biggest shortcoming of the program she is currently enrolled; it is a program that is 1-to-1, highly-intensive ABA. It is a language and behavior based program. She rarely spends any time with other children with any realistic expectations of forming friendships. All of her "relationships" are with her teachers. So, by including her in the pre-K class, she would still get the 1-on-1 that the program is designed for part of the day and still be able to develop social skills. She was to start at 15 minutes/day and work her way up to the full afternoon.

It has been 6 months. She is still only attending this class for 15 minutes/day. It's not because of the school's refusal to incorporate the plan. It's because Rachel has been unwilling to cooperate. She cannot sit still and refuses to follow instructions. They have tried several different things, and they still have been unable to increase her time in this classroom. The question is "Why?"

I received an email from her teacher that we need to consider her placement. That can be read in a couple of different ways. Are they thinking that we need to change her overall placement for next year? Do they think we should modify her existing IEP? Or are they just looking for suggestions from me as to how to make this inclusion happen more successfully? This has led to me scheduling an observation visit on Wednesday afternoon, specifically to see her inclusion time with the pre-K class.

I was thinking that they may possibly be thinking putting her in a combination of programs. I mentioned in an earlier post that one of the family of preschool programs offered by our schools is called PEP. There are several different iterations of "PEP". The schools where these programs are located, often have more than one of these programs. There are children who cross between different PEP programs (I know of one who spends part of their day in PEP-INC and another part in PEP-Classic). However, neither the locations that I know of which has CAPP (where Rachel is currently) has any of the PEP programs. I was wondering if a good solution would be to combine the two programs (CAPP and PEP-INC) in the way they are currently trying to combine CAPP with the typical pre-K (perhaps she's not ready for that yet), but this is likely not a feasible option. I know that the schools are required to implement the IEP as it is written. I also know that they will not write an IEP in such a way that the resources don't exist to implement it correctly.

So, what's the right thing for us to do? When we were approaching her meeting in October, I was worried about the possibility of her being removed from the CAPP program. And I believe I was right at that time. And I'm still concerned about this. But today, May 10, is this actually the best thing for her right now? Would she be better off switching to PEP-INC? What (if anything) would we be sacrificing considering how well she learns via the ABA model?

Stay tuned.....right now, I'm not sure what that solution is going to be. Or, perhaps I'm reading too much into this meeting....

2 comments:

UnknownMay 11, 2011 at 5:58 AM
You've explained CAPP before, but what is PEP-INC? (It sounds like a cheerleader factory! LOL)
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DRS Are The BestMay 11, 2011 at 7:49 AM
A&A, you are absolutely right -- I may have mentioned the program ages ago, but I don't think I ever described it. And you're also right about the name.

PEP Intensive Needs Class (PEP INC)is where a lot of children with autism leaving Early Intervention services seem to enter. It's a half-day program that includes a play-based curriculum to address severe communication and sensory integration issues in a small classroom setting (6-7 students) with a special educator and two paraeducators. (on paper)They often combine with another class to allow the kids opportunities to learn to function in a larger classroom setting as well (which will help in the mainstreaming process).

In fact, in almost every respect, it sounds like a great program for her, but we would lose the ABA which has been so successful for her.
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A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

The Autism Pizza

I don't know where this came from originally, but I found it on a post on Circle of Moms. It's a good explanation of how things line up on the spectrum.

1. The Crust: Lack of Social Interaction (poor eye contact, not sharing interests with you, no pointing/gesturing)

2. The Sauce: Impaired Communication (possibly no speech, poor conversation skills, repetitive language, echolalia, no make-believe play)

3. The Cheese: Stereotypical Activities & Interests (extreme routine, strong interest in certain things, stimming [flapping, atypical play, etc.] -- like spinning wheels, lining toys up, stacking, etc.)

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)