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.*
11 comments:
I clearly remember the sad, sick feelings I had after we had our meeting about a similar report before Maia began school. We had to discuss all the worst scenarios to get funding for teacher aides etc. so it was really, really negative and even though I knew that's what we'd be doing it still stung and was horrible reading it in print.
But I love your last paragraph. He hasn't changed and we think of our children in terms of what they can do rather than focusing on what they can't do yet or need help with. Sean is a great kid and I love hearing about all his progress. I think he will do great at school.
Oh Debra, sorry I know the feeling! We just need to remember how far they have come. Does that mean he will go with Hayden to school? We wanted him to go to Union Valley:)
I do think we need to get the MR changed I did not like that word!!
What a difficult meeting to sit through. I love how you said "He's still Sean". He is and those numbers may mean something in a school setting but for your family Sean is still Sean regardless of those numbers!
Love the pictures!
Deborah,
i loved reading your post, and even thou it is hard to hear, i just remind myself all the time that they are just numbers, and the numbers and the diagnosis of MR ensures that Sean will get all the services and assistance he needs now and possibly later in life.
our school came very close to not labeling wyatt as MR because "there was no indication" mind you, he is basically non-verbal, can't write, is not potty trained, needs assistance sometimes (more like encouragement) when eating. i was blown away because we needed the MR diagnosis in order for wyatt to possibly qualify for the DD Waiver (PS - have you done that yet?). unfortunately, you need that MR diagnosis to qualify, and don't be sad, no one should be sad that they have that - or at least that is the way i view it. doctors and educators have to put things in boxes in order to come up with a plan, we are there in order to ensure that sometimes they need to think outside that box!
i've struggled with everyone being so against MR - as i have an intense medical background, and MR is a medical term that can explain many many things, and can also be very helpful. it's normally functioning people that have a problem with the term because it indicates negativity, when in reality, in the end it's no more odd than a doctor using the term obese (i hope not to offend anyone with my clinical view of medical terms).
ie: we had a doctor actually refer to wyatt as a mongoloid - that term is so out of date, and possibly offensive to many, but we just ignored it, because people just don't know, or get it.
that being said, wyatt, to me is one of the brightest fellows i've ever met, and he has a way of figuring things out (i just wish he'd let me in on that process!) and is now starting to write some of the letters, etc, and trying to speak. potty is a big issue, and we are trying to work with the school - i may actually have to come in everyday to try and target what the issue is at school. and they let wyatt slide on some of the uniform requirements for obvious reasons.
you sound like you have a great school so far and i bet Sean will do great! can't wait to hear. (PS - we are actually looking into other schools because we aren't happy with certain aspects of our school - oh well - we had been warned :(
:) k
(i think i've hogged your comment area, sorry!!!!)
ps - and yeah it is a bummer when they tell you your kids intellectual age is around 3, we get that too, and we are bummed and laugh at the same time because there is a lot wyatt can do - like sign language - 100+ signs, and most kids can't do that!
Yes, I agree with Kim!
When I got over the initial shock of seeing the equivalent report in print, I remembered that the real point of it all was to get funding and services. So it needed to look like it did (negative) to achieve that aim. I also reminded myself that the teachers still adored my daughter and were actually helping her by pointing out all the ways she might need help sometimes at school.
I am just reading this today and I have to say I know I am facing the same conversation in a year. That said, are you going to be able to get Sean an aide next year? I really want Aidan included but I think his classroom will need an aide for same of the things you pointed out - potty, feeding, adapting classroom material, etc. Ah, I'm so nervous. I am anxious to see how you get through this with Sean. Good luck!! Of course, I don't have to tell you what you already pointed out - Sean is still Sean, your awesome little boy. Who cares about the numbers!!
Yes, Sean will have an aid in the typical classroom while he is in there. Most likely it will be 1:2, which I think sounds managable.The kgarten teacher that we want for him (and she wants him, too) is Aidan's former teacher. She has extensive experience with SN kids (was a SN teacher, then went to work at our Early Ed center for a few years, then went into teaching kgarten.) She is wonderful and will be a prefect first teacher for Sean. Hopefully the school will assign him to her. We can list her as a preference and she can also request him, but the principal has final say.
IEP is about a month away!
I look at Sean through "family eyes" and see the development. I seldom compare him to his peers because that is irrelevant to me. But I am his Grandpa so life with Sean is different for me than for the rest of the world. That's too bad for the rest of the world.
Scary, isn't it? You will get all the details worked out and be fine.
Apparently our school distrait has a title change at 9 years old. Max has been 'labeled' (lack of a better word) MR now on his IEP. Even the school staff hated putting that on the official IEP but as long as it is used correctly, there is nothing wrong with it.
I like hearing what your school does... so keep on sharing.
You guys are really terrific parents, Deborah. It is so easy to read in all your posts. Sean is a blessed boy to have you and I know you feel blessed with him. Thankful for you to have a school district so well equiped and invested in your child.
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