Saturday, June 13, 2009

Stetson


Well, I guess it is time to post about this. Stetson has had a really hard time with language. Especially verbal. He is pretty good with receptive- instructions and such, but struggles with speaking. We started working with Kids on the Move in October and it really has helped when he started he could say about 4 words now he has around 50 with about 30 of those being sign. At first people would ask if he had autism, but he makes excellent eye contact and he is very "present" so that was immediately ruled out. Then after working with him for a while his therapists were wondering if he might be deaf in one ear, which would explain why he wasn't saying a lot. Stetson has had ear infections non-stop, so we had tubes put in last June but he still got an ear infection about every 6 weeks, which they say after you have an ear infection you hear like you are underwater for 6 weeks after it is healed. In February we finally had the ears cleared and tested to see if he was in fact hearing, and fortunately he can hear fine when he doesn't have an ear infection. So then the fact that Chad had a speech delay (he didn't start "speaking" till around 4 or 5), same with my brother, might have something to do with it. I guess it can be hereditary, also there is the possibility that he might have a speech impediment, but those things are so hard to decipher so young. He works with an occupational therapist and a speech therapist twice a month and I have set "games" we play each day to increase his communication. Basically we are just taking this really slow, because Stetson gets overwhelmed. It breaks my heart because I can see him try to make the words and he just cant figure out how to make the sounds. This last month his therapist recommended having him tested for Aspergers Syndrome, so we made a trip to his pediatrician and she said he is right on the cusp, so she referred us to a specialist with primary childrens hospital, when I talked to the doctor she recommended waiting to test him after he is 3, it takes 6 to 9 months to get into her, and cost upwards of $1000.00 out of pocket, and it's really hard to have conclusive results until a child is a little older. So we are waiting, and just playing it by ear. And for right now we will not be putting a label on him. You know, selfishly I want him to talk so bad, because I want to talk to him. It's also frustrating just because he isn't talking does not mean he isn't smart, he is just working on other skills. We are not sensitive about it, it is what it is. And chances are I will probably look back on this in 10 years and laugh at how worried I am. We are not offended when people ask us questions, and we are not afraid to use sign. Thank you to my friend Tanya who let us borrow some of her signing time videos, they help us so much and Stetson loves them. I love them too and am thankful that such a wonderful thing was created. Here are the Lyrics to "The Good" it pretty much sums up how we feel. Thank you for reading this and for your thoughts and prayers on our behalf.

The Good

It was you and me and the whole world right before us
I couldn't wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won't find easy
But, baby, we've found the good
No, maybe we won't find easy
But, baby, we've found the good

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they get so far?

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won't find easy
But, baby, we've found the good
No, maybe we won't find easy
But, baby, we've found the good

3 comments:

Hoggards said...

I had no idea. I guess I never see Stetson. You seem like the perfect mommy though. You are completely looking out for him and trying to decide what's best! I understand how you feel about wanting to talk to him and have him talk back. I have a nephew that has no words and he's 7. Good luck with things!

Lindy said...

Jamee, he'll talk eventually. He's making tons of progress! Don't compair him to his cousins! BTW... I know other people going through the exact same thing! And, be thankful that that is the only problem! It could be much worse.

Tanya said...

I love the words to that song. Hang in there, Jamee. Stetson is a sweet little guy and you are the perfect mommy for him. BTW, come borrow more videos any time. Nate still watches them, but he can't watch all 8 at once. You are welcome to them.