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.


  1. 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...

  2. 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.