My Family's Experience with Autism: Visit to KKI

Tuesday, August 25, 2009

Visit to KKI

Well, yesterday we got the kids up early, piled into the car and took the just over an hour drive to Kennedy Krieger Institute. Funnily enough, it's only about a mile away from my brother's former apartment (when he lived in Baltimore). Overall, we were there from about 8:15 or so until nearly 3:30 for the 2 appointments (developmental pediatrician for both kids). It was, needless to say, a VERY long day.

When we left the clinic, we did so having learned nothing new. Most of what was done was a repeat of what the psychologist did last month. Even the impressions were the same. The only new thing we walked out of KKI with that we didn't have before was a lab slip so that each of the twins could undergo genetic testing to see if this would reveal an underlying cause. However, her impressions were that these tests wouldn't reveal anything.

I was very disappointed. I'm not completely sure why. I didn't think we would be leaving there with any new revelations. We weren't going to learn the cause in this one visit. We weren't going to answer all the questions with one doctor taking a little bit of time to look them over and test them. But I think I expected to walk out of there feeling like we were getting closer to an answer. Or, if not, be more frustrated by having a bunch of NEW questions that I hadn't considered before. But instead, it felt like the visit was a big waste of everyone's time. Most of what the doctor collected she could have gathered by arranging a phone interview (or 2) with me while the kids were napping and pulling data from the county psychologist's reports.

I suppose this is an oversimplification of what the visit was like. The doctor DID examine each of them, and was observing them closely while she was interviewing me. And by re-doing the tests previously performed by the psychologist, she was also able to make her own judgments as to where they are and where their needs lie. But it really just felt that the time could have been better spent in other ways. And in all the hype and waiting to get this appointment, I really thought it would be much more.

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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)