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).

Monday, February 27, 2012

Our Next Step

It's been a few days since I sat down here to write a post. I think I just needed the time to think things through on my own and digest everything that happened to my family in the last 10 days or so. And many of these things are WONDERFUL!!!! Potty Training success (Music Man is even starting to stay dry during the night [although we have no expectation of that happening right now]). And the recommendation for Ballerina's placement -- it truly is a dream come true. I just needed to take a few days and get my head wrapped around it all. And I needed to do that before our meeting on Wednesday.

It's funny that I took time OFF from blogging when I was trying to get myself organized -- usually, this is where I do my thinking. But I think this one was a bit more internal. I love sharing our stories, but I needed to think this through on my own and then come back when I understood where we are headed. And now I believe that to be the case.

I'm speaking, of course, about Ballerina's kindergarten placement. Getting the recommendation of having her enter a typical classroom in kindergarten -- that really goes beyond our wildest dreams. This is what I want for her -- for both of them. It has been my goal from the moment we began our journey in the Autism World. But I have to take a step back. That may be my dream, but is it a wise decision for HER? SHE is the one who has to go to school every day and cope with her classroom, teacher, and classmates. Is this too much for her right now?

We think it is. Her current school environment is 1-on-1. In a typical classroom, there will be 1 teacher for upwards of 18 students. There will be no supports for her. And we are seeing an increase in behaviors over the last few months as well. So, we have a proposal for the team.

We don't believe she is CURRENTLY ready for a typical mainstream classroom. And based on the reports we received during her re-evaluation, we really don't think her teachers believe she is ready for that either. But that doesn't mean that she isn't ready to be introduced to a typical classroom setting. We can continue working with her during this school year to maximize her independence in school. We can fade the supports that she receives so that she has to do more and more things on her own.

But for next year, we are going to request that she enter the Early Learning Center. The nature of the program allows her mainstreaming opportunities for gym, art, music, lunch and recess. But she may be ready for more then that. After she establishes herself in her new school setting, we can begin bringing her into a typical classroom independently. We can start with short bursts and increase the time she spends in a typical classroom as she demonstrates she can handle the experience. Then, by the end of the year, she will be ready for a typical classroom setting and in first grade, we can introduce that new environment for her.

I believe this recommendation was made blindly. I don't believe the cluster representative had access to her records and history. She came and watched her for 20-30 minutes and the teachers tried their best to be sure she was as cooperative as possible. This is a good thing. I wouldn't want the cluster representative to be biased given what was written in those reports when she arrives to observe. But she doesn't know Ballerina. I do. Her teachers do. And I feel that she is overestimating what Ballerina can do right now.

I'm comfortable with this decision. I really do believe it's best for her and will allow her to adjust at her speed. And we are only talking about postponing mainstreaming for approximately one year. She may "survive" mainstreaming right now, but I really don't think she'll be able to thrive. I need her to THRIVE. Not just get by. If one more year will make that difference, it's definitely worth that postponement.

I'm not exactly sure what I will be walking into on Wednesday. Given the reports from her re-evaluation, the team should agree with me that mainstreaming to start her kindergarten year is not the wisest placement option for her. But I know they tend to be a bit aggressive. I am going in there prepared to argue for what I know to be the best for my daughter and hopefully that preparation will not be necessary. But I'll be prepared.

2 comments:

AnonymousFebruary 28, 2012 at 10:54 AM
I'm sure you're doing the right thing. As much as you want Ballerina to join other, so called "normal" children of her age, as quickly as possible, you also don't want her to feel stressed trying to fit in. She'll get there! Let her go slowly and continue to make the progress she seems to be making in her own time and in her own way. Good work, Ilene. We're very proud of you and of 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)