First of all readers, I apologize.
I always find it difficult to write in the summer, what with the driving to the twelve camps and the beach and the playdates, all of which I’m grateful my youngest can participate in. But quite honestly this summer was both so wonderful for Zach and so brutal for Justin that my heart wasn’t into writing about it.
I’m slowly working my way back.
Some things have changed since I last wrote in July, and some of have remained the same. We think we have a new diagnosis (and hopefully his last, a story for another time) of tics/stereotopy, a condition he’ll probably always have, but in theory can be ameliorated with treatment. We are hopefully going to get in to see one more doctor in November who actually sees adolescents (a miracle!) to confirm the diagnosis and treatment plan, and we will continue to work with his neurologist.
Over the last eleven months we’ve had consults with seven different doctors ranging from Israel to CHOP, Kennedy Krieger to UPenn. We’ve had literally seven different potential diagnoses.
It’s been confusing to say the least.
Of course, just like with autism, there’s no blood test to confirm any of this, so we’re going on instinct here and believe the last doctor we saw is right.
I hope he’s right.
I may know more in November. At this point we are just hoping for closure and a corroboration of the plan we received a few weeks ago.
And of course, we’re hoping to help our boy.
Quite honestly, this has been awful for him. I thought having severe autism and OCD were challenging enough, but apparently the universe had other plans for him, plans which have completely pissed me off. We’ve seen regression in some of his life skills, his speech, and his capacity for joy, which has always sustained him. I’m hoping with time and treatment we can at least bring some of these things back to him.
I just want back “our normal.”
I will be writing more in the weeks to come. On the bright side, my youngest loves middle school (who knew anyone could love middle school) and is doing fabulously. My anxiety this summer helped facilitate some weight loss (woohoo!) that hopefully my new calmer state will not undue. Justin has been calmer, and there are still glimpses of our happy boy.
Always have to be grateful for something.
And for anyone still reading this blog, I’m grateful for you too.
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