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).

Thursday, November 4, 2010

Fitting In

Well, we are now about 12 days from Simon's IEP meeting, and I'm completely unprepared. I still don't know what the answers are. I still don't even know the right questions to ask. Well, that's not quite true -- I know the biggest question.....WHERE DOES SIMON BELONG?

I went to visit him at school not long ago. I actually got to spend some time in his classroom, but missed the circle time due to heavy traffic. I got to see him do an art project; watch him listen to a book being read; have a snack; and of course, talk to his teacher for a while. He seemed all right when I was there -- he was behaving as one would expect. He clearly likes doing these things and likes his teacher. But is he LEARNING anything? Or perhaps that question should be is he learning ENOUGH? Or, another perhaps, is he being challenged in ways to help him grow and develop?

Maybe that last one is the right question to be focusing on. We need to see him challenged so that his world continues to change and expand. He needs to be introduced to new experiences. He needs to be willing to follow an example so he can learn without compromising his independence.

Is MPAC the right place for this to happen? Or should he be at CAPP? (I still don't think he's ready for PEP -- not even PEP-INC). I keep finding myself thinking that we need to move him to CAPP.

But then I start thinking about why I am thinking along those lines.....is it really the best thing for him? Or is it the best thing for me? Is my desire to have the twins together interfering with determining what is in Simon's best interest? Am I unfairly comparing them again? In my defense, comparison is necessary here. Through Rachel, I'm seeing the potential of change within a short time that a child can experience, and I suspect that even more is possible. Simon has not had that level of change. And I suspect that, even if his placement was perfect, we still wouldn't see that scope of change. The question before me is whether this change is something that I SHOULD expect from Simon (meaning that we have a problem right now) or if Simon is currently working to his full potential for the moment.

So, the question again -- is MPAC the right place for him? Or should he be at CAPP? I still seem to be leaning to moving him to CAPP. But 11 months ago, we knew that was the wrong thing to do. Am I sure now that it's right?

As nervous as I was about it, preparing for Rachel's meeting was so much easier. I knew the results that we needed. I just needed to make sure that I gave them all the necessary arguments to make sure things turned out that way (as it turned out, they agreed with me so there was very little for me to do). For Simon, I'm not sure what the right answers are. Therefore, I have no way to be sure if the results of the meeting are the "right" answers.

And what if I'm wrong.......

1 comment:

heatheramypriceNovember 4, 2010 at 1:00 PM
And this is where you walk into the meeting with an open mind and a willing heart. The teachers there spend plenty of time with him and maybe they have an opinion as to whether his placement is working well or if he'll be challenged more elsewhere. (are you talking about being challenged academically or socially? For instance, Chananiah is classically autistic enough that social skills are non existent but he's already reading in 2 languages, adding, telling time, and doing most things that kindergarteners can do and he won't be in k for at least 2 more years--- so I couldn't care less if school is challenging him academically--- that's not what he needs-- he needs the lessons in turn taking, patience, not biting others just because they're next to you, etc etc---- ). All the time I say to my kids' teachers: ok, here's what I'm doing at home for this problem--- do you have any ideas?

good luck!!
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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)