ASD Diagnosis- nothing new here, old news!

 On Wednesday afternoon, on our way to therapy, we got THE CALL from CHOP. We have been on their wait list for their pediatric developmental department since October 2011. Last minute cancellation meant we were next on the list. Could I make time and was I available for Thurs at 8:45 a.m.  Heck yes!! Problem- he had a 2 p.m. eval/intake for the Center for Autism. Pull up your big girl panties, it's going to be one of those days!Yesterday, JD, Hubby, and I, spent all day at evals.

At CHOP- no miracle. I didn't expect one. Maybe some of the extended family hoped for one, but not us. After the eval plus an hour of waiting in this patient room for the pediatric doctor to come in and meet us- BTW she was there maybe 5 minutes before she left us with the other 2 doctors who we'd already met with. Wasn't impressed by her. She didn't listen, she just wanted to hear herself speak and treated our diagnosis as an everyday occurrence. I get it- for her it is an everyday occurrence. 1 in 110, 1 in 7. Clearly an epidemic. So yes, an everyday event for her. But this is my child- he's important and he counts. A little respect for our time would've been appreciated. But I just chose to let this battle go. Anyway- back to after the eval;

Diagnosis:  Autism AND Developmental Delay.
Tested at or below a 2 year old level.
Mild- moderate ASD

Next step is genetic testing. Immediately I fear for my girls, even more than before. Good news is nothing has changed since December's eval by Early Intervention. The surprise and up for debate is the Cognitive developmental delay. And what happens if his developmental delay never catches up, regardless of all the therapies? What will 10 years from now be like?  Or when we're in our 70's and he's 30? What will the delay be?

At McDonald's before our second and final stop- there was an older man with a vacant stare sitting at one of the tables with an aide. She was eating lunch and he was sitting in front of her, staring at a wall. Another older lady, clearly with them, was sitting at the next table eating her lunch. I saw the elderly gentleman and wondered- will that be my son? As quickly as the thought went through my brain, I rushed back into the moment, and focused on feeding JD. I can't afford to think about the future. But I can't afford not too, because we need to draft out a trust and will for him.

I do wonder- do most 2 year olds count to 50 and can they do so by 5's? Can they read 3 letter words and start to spell them? Can they memorize books and retell them? Can they memorize scenes in their cartoons and retell them? Because I see these amazing things my son can do, and I don't see a cognitive delay. I see other delays, but I assumed they were all ASD related. The speech, the clumsiness, the behaviorial. Cognitive? I never worried about the cognitive because I have always felt he was a very bright kid who just couldn't verbalise or who couldn't stay still long enought to want to do some of the tasks they were unable to get him to do. He didn't feel like drawing shapes yesterday. He is capable of it, he does it at school. His teacher and his therapists don't feel there's a cognitive delay. But today for some reason there was. I dunno.

I have to let this go, I do. Inside I am crying. The image of the elderly man at McDonalds and I see what could be JD once we're old or if we're dead.  And if my girls are neurotypical, they have this responsibility to act the part of his guardian. If I stop to think about it, like now, I feel myself losing control. Today I am once again the ASD mom in the cage screaming. Glad I have so many things to do today before the girls birthday party tomorrow. Off I go to pick up the tot!

At least this diagnosis allows him more services. One moment, one day at a time in Twingleland.
For my own sanity- I need to take one day at a time and hope above all, that our love and dedication will be enough. That I stay strong and fight and push to get him what he needs.