Phew, what a month May has been! Last week I was up at Kennedy Krieger for appointments for both Thomas & Ben.
Not much new with Thomas... he is still delayed for gross motor and receptive language, but he is doing good with fine motor (scoring above his age group!) though his does have nice social interaction skills. Thomas is now 14 months old, cruising nicely, and eager to walk. He still receives Physical Therapy weekly. I hope he is walking next month!
Thomas with his exceptional fine motor, writing and drawing!
Ben was seen by a speech pathologist and developmental pediatrician at Kennedy Krieger for a full evaluation. Last May I had put Ben on the waiting list (when we were awaiting a diagnosis and I was eagerly calling every specialist to get on any wait list I could). Ben's name cam up this Spring and I scheduled the appointment - I figured it couldn't hurt to have "the best" evaluate him for one more opinion. Plus, I was still struggling with the mixed diagnosis's of Aspergers from the psychologists and developmental delay from the developmental pediatrician. Just two weeks prior to this appointment Ben saw his developmental pediatrician who did say that after a year of treatment she believed Ben to be on the spectrum with the diagnosis of Aspergers. So this was three in agreement (developmental psychologist, school psychologist, and developmental pediatrician). In any event, I still wanted to see what Kennedy Krieger had to say. After several hours of intense testing and countless forms, paperwork, and parental feedback we had our answer. Their diagnosis was
PDD-NOS (pervasive development disorder, not otherwise specified) which is an Autism Spectrum Disorder. The nuances between someone diagnosed with
PPD-NOS vs Aspergers is slight - both are on the high functioning end of the spectrum with little communication delay. I still feel though Ben should have the Aspergers classification (to note that Aspergers will go away completely in the
DSM-V and all children on the spectrum will just be classified as ASD) but I was still relieved to know that everyone was all on the same page with him being on the spectrum. I have read that many children diagnosed with PDD-NOS later go on to receive the diagnosis of Aspergers as well. Ben will have a follow up appointment in Baltimore in 6 months to meet with a neurologist and psychologist.
The developmental pediatrician at Kennedy Krieger also gave Ben the diagnosis of anxiety (not atypical for someone on the spectrum) as he is always
catastophizing things ("What will happen if I fall asleep in the car and you run off the road and hit a guardrail moma?!") Really, what kid at age 4 worries about such things?!
Ben's interests still focus on trains, though most recently his focus has narrowed to the NY subway system. He enjoys looking at the maps, building out the different lines (express and local trains) and is trying to learn each train route. He also enjoys the DC metro train (specifically the red line) but we're trying to expand his interest to subway trains in general.
Riding the metro after Aunt Sarah's wedding.
Also, if anyone is looking for a good summer read, I just picked up
"Look Me in the Eye" by John Elder Robinson (brother of Augusten Burroughs - author of Running With Scissors) which is a memoir of his life of growing up with Aspergers. It's given me a new insight as to how Ben's brain may function and how he rationalizes things.
