I'm Back

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.

For more on my family visit my blog at autismmommytherapist.wordpress.com

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