Sunday, November 1, 2009

"The elephant in the playroom"

Friday we made our almost monthly trip to Barnes and Noble to satisfy my need for new reading material on Sensory Processing Disorder and any other disorder that Lex could fit into, to try to give me new insight on what I can do to help my darling boy. While looking through the shelf where they have books on "Special Needs Children" (yes that is what the shelf was labeled... ugh) I stumbled upon the book titled above. It's a compilation of essays done by parents of children with developmental disorders ranging from sensory processing disorder, to ADHD, to Autism, to other physical and learning disabilities. I am only to the second chapter but it makes me feel like I'm not alone with a "difficult" child. (I knew before I'm not, but some days are harder than others to remember that).
The second chapter is about taking care of yourself in order to take care of your child. This, I have to say, is where I find myself faltering most days. I can give and give and give until I'm blue in the face but when it comes down to taking care of me I just can't take the time. I can't take the time away from Lex to exercise or to eat right. I feel awful when I have to take time away from him to do laundry or dishes, but in reality these things are for him too. I just have to work on this with Nate, doing a tag team with him so that I have time to be Cate instead of Mommy all the time.
This past Thursday we took Lex up to the largest college in the area to join a program with other children that are non-verbal. It's a combination program, they work with him and they work with us. After dinner they separate parents from children and we parents have a class on the topic of the week. Last week's topic was about other forms of communicating and how to follow our children and encourage them to communicate more. Then we break off with the student that is supposed to work with our child and they take them into a room with a one way window and we watch them play with him and then we switch to show what we've learned. It's kind of odd playing with Lex with someone watching and taping it but we managed.
Initially when I was getting information about this program I was worried that Lex was going to be the youngest by far but there is another little boy who just turned two there. Lex once again showed that he is the ring leader, after dinner he took off to play (he's not shy by any means) and figured out he could reach the light switch so he turned it off, and then it went off 3 other times, he had showed the other kids how to do it. He also decided that night he wasn't terribly interested in playing with the student that was working with him (she was a fill in for our regular one since our's had no voice), he decided that once she followed him to all the toys in the room he was going to tune her out the best way he knows possible, by spinning. I've found recently he will close himself off by spinning because then I don't really know if he's paying attention to me, it suits his purpose. I also think it's calming for him because it puts him in control. The only other thing that he finds calming is running a tag between his fingers, his daycare teachers give him a pair of shorts he has there when he's really frustrated and it calms him down, here he has a couple of blankets that he grabs and rubs that tag.
While I'm sitting here writing all I can think is how much easier this would all be for me if I knew a diagnosis. Working in the medical field with hopes of going to med school in the future I know a diagnosis generally leads to a treatment that is most appropriate for that diagnosis. While I know speech therapy is an appropriate treatment for a speech delay but I think we are past that possible diagnosis at this point. He was in occupational therapy for sensory processing disorder when we were going through the hospital and I feel that he should still be in occupational therapy (something I will be changing at the next IEP meeting as he qualifies for those services). While I feel some days like sensory processing is the answer there are certain things he does that makes me question if there's not something more going on there. A diagnosis would have my grandmother stop telling me there is nothing wrong with him that a change in my parenting wouldn't fix. But no matter what my little man is still amazing to me.


Sarah R said...

Aw, I have no advice, but I do have hugs. I hope you guys get more of a solid diagnosis so you can find a plan that works for both of you.

D said...

A diagnoses only tells you what you're facing, as a parent you'll feel powerless. Depending on others to get the help he needs. Push for everything you can now. There is no reason to wait for your next EIP meeting. Call up your services coord and ask for an ot asap. Ask about a Special Ed teacher and if he should have an increase in speech services. (((hugs))) There will always be someone who thinks you can spank him to "normal", you just have to ignore them.

Cate said...

Thanks for the recommendations D, what would I do without you?

the mol said...

yea, your grandmother needs a smile and nod. Although I agree that a diagnosis would make you feel better and you could tell your grandmother and others why certain things are happening and why he does things a certain way.

Agreeing with D--be proactive.

the mol said...

Great title, I have to say!

And I agree--if you feel that he needs something different, don't wait. Act now.

Grandmas are...special.

tbonegrl said...

Ditto D.

Does he have a taggie blanket? (My kids are addicts) We're having a swing installed in our house so they can swing and spin (mainly Jack) and we got a swing set so in the warm weather Jack can spin to his heart's content.

Thanks for finding me. I plan to be back!

tbonegrl said...

I forgot---I LOVED that book "Elephant in the Playroom." Our OT let me borrow it.