My Family's Experience with Autism: The Insantiy Has Shifted

Tuesday, May 22, 2012

The Insantiy Has Shifted

Well, we survived much of Big Brother's schedule. That was helped by the rain -- his baseball game last night has been postponed to a time to be determined later. And the rain may also cancel our presumed baseball practice.

We are now preparing for the other parts of the insanity. Music Man has his first appointment at Children's Hospital tomorrow and, of course, there's Ballerina's Placement Meeting next week. There really isn't anything else I can do to prepare for Ballerina's meeting. I've visited her at school to see how she does in the kindergarten classroom. I was hoping to see her on Thursday, but I just received an email saying that it wouldn't be possible because someone from the school for next year will be observing her that day. With Music Man's appointment tomorrow, a field trip for Ballerina on Friday (all school day) and the holiday weekend, there is no more time. So, I'm not going to get the chance to see how she does during the extended time in the room (she's now in the kindergarten classroom for 2.25 hours in the morning).

I still have no idea how her meeting is going to go on Tuesday. I don't know if she is going to show up for part of it. I don't know what everyone is thinking. I'm still not sure of what the term "resources" REALLY means. I'm not sure what the right answer is. And that lack of certainty is driving me BANANAS!!!!!!! But at least I'm insanely busy, right?

Music Man will be going to a new doctor's office tomorrow. Ballerina has been there a few times and the doctor is very nice and great with these kids. But it will be an unfamiliar place. And, unlike with our regular pediatrician, he is NOT going to be able to wait in the waiting room and have everything set when he arrives in the office. There is going to be a long conversation between her and myself while sitting in the exam room. There is going to be some testing. There may even be some referrals being made. But, worst off all, there is an elevator. And, sitting here right now, I honestly don't remember what floor the doctor's office is on. But Music Man HATES elevators and he may have to take a brief ride in one. I'm hoping we can avoid that.

And he's going to be out of his routine. Even though it is a Wednesday, he won't be going to school His brother and sister will be going to school (in fact, we have to drive Big Brother to school) but he will be sitting in the car for about an hour to get to the doctor's office and will be there for another couple of hours before getting back into the car for the hour-long drive home (well, 30-45 minutes since rush hour will be over). It's going to be an interesting day.

I also need to decide if I want to bring up Ballerina during this visit. I mentioned before in a previous post that she was diagnosed with POTS and has begun treatment for this. The developmental pediatrician, as far as I know, knows nothing about this. Ballerina isn't scheduled to return to Children's Hospital until September (the first appointment I could get). So I need to grab her attention to talk about Ballerina for a few minutes and once I start, I suspect all of my concerns about her placement meeting next week are going to come out. But I have to keep things like that at bay -- we are there for Music Man's benefit. And maybe we'll start to understand a little more of what's going on in that head of his.

So, the insanity hasn't stopped, but it's switched direction just a bit. Hopefully, I'll be able to find some time to come back tomorrow and write about how the visit went, but I don't know if I'll have the time or the energy.

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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)