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, June 30, 2009

Kennedy Krieger -- Any Regrets?

Well, after nearly 2 months of waiting for an appointment, I received a phone call from Kennedy Krieger (KKI) today -- well, 2 in fact (they need to talk to each other over there -- only 1 call for an appointment was necessary). They had a last minute cancellation for an OT appointment for tomorrow morning (9-11:30) and wanted to know if I was interested in booking it for Rachel. I declined. Daniel has to be at camp at 9 and we have a field trip for both Rachel and Simon at 9 and because it was such a last minute thing, Kevin can't take the time to be home to take any of the other kids to their activities. So, I've pushed off KKI. Is that the right decision? Right now, I have to say "yes". Autism as a whole is interfering with all of our lives. I have to try to find a balance. And making significant changes to existing plans at the last minute is giving autism the upper hand.

I was really hoping that they would be able to see both Rachel and Simon on the same day -- just needed to find someone to take care of Daniel for the day. It may have even been possible to take him with us. When I was on the phone KKI, it didn't sound like that was going to happen. They are trying to get the 2 appointments for each of them during the summer. If we were able to take this appointment for OT, we would have had to go back on Monday for the neurologist to complete her evaluation, which would have left just Simon to be seen. They are hoping to schedule him for the end of July. But that still leaves the question about why they don't want the 2 of them to be seen by a speech and language specialist. So, even under the best of circumstances, it looks like we're going to have to make a minimum of 2 trips up to Baltimore to complete these evaluations. The question following that realization is where is the time going to come from in order to take those 2 trips?

This really isn't a "down in the dumps" post as many of my others have been. Just voicing my concerns now so that in a couple of days (or hours or weeks or months), if I regret the decision to not grab the first available appointment and writing down my thoughts so I can look back and maybe not feel so guilty of my decision.

2 comments:

Serial MommyJuly 5, 2009 at 2:23 AM
i know what you mean about autism taking over your life and trying to find the balance...oh my word, james has SO many appointments a month, and that doesn't count our bi-weekly appointments with our family therapist/worker...why wouldn't the place see them at the same time? that makes NO sense to me, and until they agree to do it that way, i'd keep telling them no...after all, it's YOUR time they are asking for...
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DRS Are The BestJuly 5, 2009 at 8:09 AM
Unfortunately, for KKI, the waiting list is like 8-9 months long -- you need to take appointments when they give them to you. Because we're relatively local (people come there from all over the country), we get a crack at last minute cancellations, with the consequence of having to make last minute changes to existing plans. Next time I will probably take advantage (especially if we don't already have set appointments), but this time I just wasn't ready for it.
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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)