Yesterday was Elvis day, at my house that's a combo of the day Elvis was born and the day we got engaged. We celebrate it every year, even in just small ways or just acknowledging it. It gets harder to do, as most things seem to, as life goes on - simply because life keeps getting in the way.
I started my morning at Charlie's school at 745 am for what I thought was an IEP meeting. Your IEP meetings are where you talk about what services your child is getting, what services your child WILL be getting and stuff like that. It's boring as crap mostly, because you listen to three hours of sentences that sound like this "With three or less manual interventions Charlie will follow a three step instruction 70% of the time." That is no joke. It goes on for hours. There's probably some important stuff at the end but I've zoned out by the time we get there. I have a little mental list of what's important TO ME to talk about and let them report the data they've gathered and make sure he's not getting LESS of ANY service. There is always a general education teacher who has to sit in and I always formally excuse her as there is no way my Charlie is going to be mainstreamed into regular ed ANY time soon. I consider it a mercy act. You're welcome random teachers.
But yesterday was a re-evaluation. That's' where the school system psychologist has come in and is requalifying Charlie for his services - and re-diagnosing him. It's not really a big deal on the outside. There are no secrets here I know Charlie is severely autistic. He's in level 1 class, the most delayed.
The words that cause that moment of pain are always when they tell you what his level is - what age he's developed to. Charlie's RECEPTIVE language, the words he understands when you speak them, have DRAMATICALLY gone up. He's estimated at about 45 months of development. As a ten year old that's terrible. As a severely autistic ten year old that's really good. He understands you.
His expressive language skills continue to lag. When we put him in pre-k for autism they estimated Charlie at about 10 months old. He was four. That was hard to hear. I'd expected a similar result in his expressive language but no. He tests about approximately 28 months old. He's ten.
When I sat and thought about it I realized that's probably right. Short two word sentences, usually one word. That's about a two year old. While it's light years from where we've come it's still so heartbreaking. He's a giant two year old.
I guess they saw my face and the psychologist got super positive about his progress and how she feels he has a lot of capacity to learn and retain, he remembers things very well over long spans of time. That didn't make me feel any better. It should, but it's hard to feel positive about any of it sometimes.
We'd both planned to spend some romantic alone time when I got home from work, but alas Autism once again took ahold of our day and Charlie had a diaper incident. Let's just say the smell of a horrible diaper incident is the opposite of romance inducing.
I got to spend Elvis day with the five people I love best, however, regardless of the frustrations the day was tinged with.
And somehow I got a coffee and Starbucks and they put my name on my cup without asking which I'm calling magic because witchcraft seems unlikely. (I suppose the really friendly barrista could've known me but I seriously didn't recognize her - part of me is afraid she's someone I fired). The coffee was one of the highlights of my day.