This blogger left a question about 'vestibular & proprioceptive' function. I didn't know what the heck she was talking about, looked it up, and I was still confused. I just rested on the knowledge that we had the eval and surely the OT would have looked at all areas.
Well, as I know all too well now, they didn't. For whatever reason we were mostly stuck working on Tactile function, which is a mild if even notable issue with my little one. So, we moved on (after way too long, but that's ok) to a new OT. Last week, I blogged about that experience and how I was disappointed in not getting a formal Evaluation. New OT didn't do an informal eval. either, though she did ask some questions and allowed me to interject questions.
Then today happened.
DS was out of routine. We had friends over several times over the weekend (including twin 2 year olds & a baby), missed both sessions on Monday, and then a friend came over to play this morning. DS started retreating from the action on day 3 of friends over. Monday he was overstimulated and out of sorts as the day started. This morning he started the day overstimulated (uh, when he got up he refused to stop counting until he had counted from 400-0 backwards). Then an unexpected guest came for a short play & DS all but IGNORED his presence the entire time (it was a fellow 2 year old). Not to mention Daylight Savings.....
And then it was time for Suzanne.
Our session was pretty good to start. DS and Baby Sis played with the Magnadoodle while we talked about the week. Nothing huge, but nap time has been going better. Then the attention focused on DS. He didn't want ANY PART of taking instruction from her today. The simplest of things sent him running to the next room, grunting, tantruming... She would stop the request, go after him, try to regain some trust with him, give him a few minutes of uninterrupted play and then try another request. He was NOT having it. She says to me 'I've never seen this before, is this normal? I can't believe he's behaving this way, he's always so good'...
Then it happened. What I see EVERY day when DS gets overstimulated. What none of the others get to see because they are so loved and new and part of the routine....... what no-one will listen to me about...
He started his circle around us.... boop-a-dop-da-deee-dop-da-doo...writing in the air...twirling the hair... NON-STOP. We went back to discussion and he got MORE wound up and MORE wound up and MORE wound up.
She says to me 'This is concerning. Most kids would be exhausted by this type of movement. but he seems to be getting more out of whack as he goes. I'd say he's at a 100 right now and I don't know how he's going to get back down to 0.'
And I say to her 'I hate labels, but does Vestibular Dysfunction come to mind?'
YUP! We had the best discussion after that.... why few ever see it... what might help... how frustrating it has been for me to bring these issues up for them to be passed off as 'typical'.... etc.
I can't recall our whole conversation, I just know that it was positive. She is the best listener, so good at her job, and so in tune.
Now, even though we discussed a lot today & she is pretty positive a craving for more vestibular stimulation is to blame for this display.... I just mearly want someone to entertain the idea. I want my OT to listen tomorrow as I tell her why I think we need to talk about it and I want some sort of concrete set of questions to either support or deny it's presence. I don't want to just blurt out 'I think he has Vestibular Dysfunction'.... but also a set of descriptive words won't cut it either. When I seperate all the things that make ME see it, it is always passed off as something else. So, my plan is just to tell her about today.
I think Suzanne and I are both the type of people that feel that if we have a good hunch about something, it's not going to hurt DS to try weighted belts or vests or crash pads or swinging or other types of helps. If it doesn't help, fine. We missed the boat.
I am really tired of everyone else who seems to think that their time is so invaluable that they can pass off my questions as 'oh, no no no. thats not an issue'
Ok - I do sound a little bitter. Oops. It was a really great day - despite having a hard time with DS from sunup to sundown. I hope to have more ideas to help him now. Because at the moment, when he gets like that.... there's not much I can do.
My list:
Constant marching, writing, twirling of hair, or figiting.
Cant stop to eat
Does great in the carseat when he is strapped in
Does great in the wagon, on swings
Loves rough play with Daddy
Sometimes a tight hug helps to calm him (if he can stop)
Can't lay still to take a nap
Hops all around on the floor while playing
Bumps/bruises/clumsiness
*He does stop to read/cognitive tasks*
Suzanne and I also talked about his preschool observations coming up & how things like this make me think he should qualify for preschool services - and yet everyone thinks he won't. I told her I can talk all day long, but what they see in his observation will not be what we deal with. She assured me that she would write up an encounter of this event so that it would be handy when time comes for people to advocate for him.
8 comments:
Laura... How many times have you asked me to read 'The Out of Sync Child?' I'm requesting it at the library tonight. :-)
Amen to this comment you made in your post...
"I am really tired of everyone else who seems to think that their time is so invaluable that they can pass off my questions as 'oh, no no no. thats not an issue'"
Glad I found your blog, it's a great read ( :
The other thing I think you could try is videotape this behavior. That way, you can show it to whichever evaluator needs to see it and not have to just hope that it happens in front of them.'
Thanks Jann - I had my video camera out a couple weeks ago and this morning as well. So, now I don't feel crazy for that. I hope I get a few clips I can burn to a DVD that will be fairly concrete.
Im headed to find 'The mislabeled Child' and 'Out of sync child' today.
ha! Of course, I was just stabbing in the dark, but every now and then that works, you know.
Sounds like mixing it up was just what E needed. I'm so happy for you. FINALLY you check out the Out of Sync Child. You'll have to let us know whether it resonates.
Brad still does that thing where he takes a ball, puts it under his bum and bounces and squirms - a vestibular thing, I think. Just last week, we were on a playdate and the host objected on the grounds he would break the ball. I was like, come ON, I'll buy you a new ball if it breaks. LOL What EVER, soccer mom!
I am glad your OT got to see what you see. I feel bad that it had to happen under such circumstances, but it's a good thing in the long run. And counting from 400 to 0 is impressive! My little guy can only count from 2 to 6. He always leaves off one.
I was going to suggest videotaping and I see that it's already come up in the comments. If interested, we also use a pressure vest for Rhema that I got from affordabletherapysolutions.com... it seems to help.
Glad someone finally listened - mama's instincts are usually right on.
So, what does the pressure vest intend to do and what do you see it helping?
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