This evening Doug and I went to our Parent-Teacher Meeting at Sean's school. The school has volunteers do childcare in the gym so both parents can attend the meeting, thank goodness because it turned into a much longer meeting than I expected. The kids were happy and excited to play together in the gym. Doug and I headed towards Sean's classroom, where we usually had meetings, only to be re-directed to the conference room instead. Awaiting us was Sean's teacher, the school's physical therapist, speech therapist and occupational therapist. New to us was the district psychologist that I had talked to on the phone once before about the ABAS form. Usually, we only get this kind of gathering when we have IEP meetings.
Tonight they gathered to tell us about the various cognitive and behavioral testing they'd been doing with Sean over the past month. This wasn't a typical sit-down-and-look-at-art-projects meeting. Butterflies swarmed in my tummy as each person went around the room and told us how they think Sean is developing.
Thankfully, they are all very kind people, with wonderful, gentle personalities and truly love their jobs. That made hearing things that I guess I maybe wasn't ready to hear easier. Don't get me wrong, I knew it was coming, I knew we were going to go over the testing... but... the NUMBERS. The numbers get to you even though you know they are probably right. There really wasn't too many things I felt I needed to say, "Huh? Sean can do that. You must of caught him on a bad day." In fact, they all had many positive things to say about Sean's progress. For Sean, he is making progress and IT'S GOOD.
Compared to other children his age without disabilities... eye yi yi. Not in the same ballpark. Miles and miles away from the same ballpark. And miles.
I guess I felt a bit naive. He's not our first child, surely I should remember what typical 5 year olds are like? And seeing Ella just zoom right thru babyhood, making giant steps towards preschooler-ish behavior sure is bridging the gap between Sean's cognitive age and hers. I mean, for Pete's sake, she's just 19 months old and can jump, clearing both feet off the ground a good 4". Sean just started jumping last summer. Um, yeah, hello? Light bulb?
These numbers. Harsh.
Sitting here, re-reading the report, seeing "Chronological age=65 months" and seeing the oldest developmental age listed is 46 months (that works out to be roughly a 3 year, 8 month old child) for a skill area defined as "Personal Responsibility." Personal Responsibility, that's stuff like taking his dishes to the sink, throwing away a tissue, washing his hands. They said he marked high in that area because he is potty trained. All other areas he ranked under 39 months (3 years, 3 months). Language was his weakest area, not surprisingly, he is developmentally around 2 years old.
Sucks in air.
I'm supposed to send my almost 6 year old child to Kindergarten when he can only communicate like a 2 year old?
Hold my hand. Squeeze tight.
It's very overwhelming.
And you know what? Since I can't possibly begin to fathom what it is like for a child of Sean's abilities to be in that environment, you know what I asked about? Something so NOT important, I am sure. I asked how Sean will be able to manage the school uniform requirements of tucking in his shirt and wearing a belt. Sean's never worn a belt, neither had Aidan until his first day of school. We taught Aidan how to buckle his belt in a few days. Within a couple of weeks he'd gotten the hang of tucking in his shirt. I'm worried that it will make Sean's potty independence difficult if he has to struggle with a belt or ask for help every time.
Silly, I'm sure.
I was reassured that the school would not hold the uniform issues against Sean and that they'd work something out.
We talked at length about Sean's food issues and our worry about how it will affect his lunch at school. Those questions will be worked out in detail at the IEP meeting (to be held in April) once the elementary school staff can be involved. Doug and I actually wondered today if one of us would have to go to school every day to feed Sean. I doubt that will be the solution, but that does show you how much we have been worrying about it.
So that's that. We heard the numbers. We have the results written in black and white. Our son now has the official diagnosis of Mental Retardation.
He's still Sean. Those numbers haven't changed him. He's still the witty, silly, lovable, stubborn, consistent, loud, trouble-seeking little boy we know. He's ready for Kindergarten and we will be too.
*I'm throwing in photos of Sean, busy being a kid living life to the fullest, in this post not to throw off your reading rhythm, but as a reminder. A reminder that the piece of paper may say one thing, but the spirit of the child says another. My child is full of spirit, he's fun to be with, he's capable of learning new things. This is just the beginning.*