Saturday, March 26, 2011


We just returned home from four and a half hours of speech-language evaluations at Kennedy Krieger. We were referred for testing last month by our Neuropsychiatrist, at which point we were put on a waiting list for evaluation. A six month waiting list. Somehow, I managed to throw just the right sort of fit -- both polite and understanding, but sufficiently firm and urgent -- to get our eval moved ahead five months,  and off of the wait list (being completely flexible about our time, helped too).

Today, Simon was given the Preschool Language Assessment (PLAI) and the Autism Diagnostic Observation Schedule (ADOS). I also had the distinct impression that Brian and I were being evaluated (I was right), our every interaction with Simon -- from basic care, to mitigating meltdowns -- was noted.

To say that it was a loooong afternoon, which tried the patience of all participating, would hardly be sufficient. Frequent breaks, bribery and tears punctuated short stretches of successful testing. The highlight of the afternoon was a vending machine run.

The results aren't a surprise, Simon is still "three standard deviations" below average for speech/language and communication skills. His performance is ranked in the 2.5 - 2.8 yrs. range. He tested positive (again) for Autism, as well; PDD-NOS. His communication and social skills are considered seriously impaired; therefore, we are being referred to more services -- for which, of course, there is a significant waiting list.

I'm tired of being put on waiting lists to get help for Simon. This litany of hurry-up and wait is a maddening protocol. It is beyond frustrating (I think I've arrived at just plain pissed) to identify a problem, request help from your overseeing physician, then be referred to a specialist whom you have to wait months to see, to get confirmation of the problem and then get referred for an evaluation that takes months to occur, to then acquire a positive diagnosis and then -- finally -- be referred to therapeutic services that you have to be put on a waiting list to obtain! Years can go (have gone) by just WAITING for help, well after the time you know you need it. And, of course, all during the critical "early intervention" years. Alas, as far as I can tell, there are currently no alternatives to this dysfunctional "system." Dishearteningly, I imagine this is because of the amount of children needing help, and the lack of adequate resources. In the meantime, I have requested to be given very detailed, explicit recommendations on what we can do to implement therapeutic communication strategies both at home and at school, and the lovely specialist we saw today agreed.

On the upside, Brian and I tested well. Amidst my mini-meltdown (expressing my frustration with waiting lists, see above), the therapist stopped me (fortunately before I got to the tears part). She said that Simon has been getting lots of help, and that it was clear that the reason he is doing as well as he is is because of the intervention he has received thus far. She also said (and I think I will take this compliment and carry it around with me as one of the best I've gotten) that Brian and I were some of the best parents she has seen when it came to working with Simon to improve his communication skills on a day-to-day-minute-to-minute basis. She cited examples of our giving him appropriate language cues, waiting for his processing, and finding unique was to motivate him -- things we don't even realize we are doing. As a parent, you just do it.

I'm trying to let this -- the understanding that maybe, just maybe -- we are doing well by our son, whose needs are sometimes so intense, and whose care I sometimes feel inadequate to perform, over-ride my frustration and even anger at what feels like an insurmountable delay at addressing such serious diagnosis. I'm trying to let it give me hope that we've done well, and will continue to do better. To believe that Simon will get everything he needs to become a successful, functional adult, and that I have done all that can be done to facilitate it.

I'm trying.

1 comment:

  1. Hi,
    I just want to say that Simon is so lucky to have you both as parents and Olivia as a loving sister. Reading almost all of your blogs, it does seem like you are doing a great job to improve his goals and just loving him unconditionally.
    I totally understand about the waiting lists and wanting answers. But coming this far with my sister, I will be here no matter what to help you get through this like my parents has with my sister (which i took over.. haha) but Simon is so lucky to have a family that loves him the way he is. I am proud to say that I am lucky to have you as a mentor and hopefully a friend in the future. I hope sometime i can meet Simon and for you to meet my sister.