Monday, July 26, 2010

Pity Party Over

Lemons sliced and squeezed, sugar added thanks to the multitude of friends (in real life and from around the virtual world) sending me cups of it, ice added (thanks Miss Vicki!), and just a little vodka to take the edge off.

A toast to YOU, amazing friends, who have taken my breath away with your kindness.

And now the big question is what now?

And the answer is I am not sure.

We are waiting on the official report from the Camarata's, and have a phone meeting planned once we receive the report.  We will continue to follow-up with them.  I have also contacted a local therapist with experience in RDI and Floortime who we hope to have start working with us.  For us, my hubby and me.  I feel like I need someone more local who can help us figure this stuff out one on one. 

I told our speech therapist Miss S about our trip and what the Camarata's had to say, and she was very supportive.  She knows who the Camaratas are and acknowledged their coolness. She agreed with their analysis, but did mention that she has seen J-man be more interactive and engaging over the last 6 months (WAY more than they did, that is for sure), and that she is very pleased with the progress he has made in speech.  She also told me that she feels that... aside from the interaction piece and the language piece... that J-man is definitely hindered by apraxia.

And here, dear readers, is why parents go ape-sh*t crazy.

You see, the Camarata's don't believe apraxia exists as a diagnosis.  And I told Miss S that, and asked what her thoughts were.  And we had this GREAT conversation about the nature of research, of diagnosis, and of intervention.  Basically, there are plenty of professionals who do not accept the Childhood Apraxia of Speech as a 'real' diagnosis, largely because there is not enough research to support the diagnosis as real or different from other diagnostic categories. And they would be right... the research is not there.  But Miss S did say that if we called it an oral motor planning problem, they would probably be OK with it.  And they probably would...  they definitely said he has 'immature speech patterns', but honestly he used very little speech or speech sounds during the evaluation. 

She said that regardless of the semantics, she has routinely observed his struggle with forming words.  And the truth is, I have too.  I can see it in every attempt he makes.  I swear, sometimes it sounds like he has marbles in his mouth.  And you can tell it is so terribly frustrating for him. 

It was a good conversation, and nice to get the input of someone who has been with him for a while.

So much to digest and think about.  So many unknowns. 

But on a positive note, check out this cute picture. 

 Yes, those are my shoes.


Leightongirl said...

Wait--I have those shoes too!

This is the challenge of diagnoses and labels, because they don't really tell you what to "do" next. I am glad you're getting support and looking for more input locally. It truly sounds like you are on the right track--paying attention to your son, trusting your instincts.

Rebecca Smith-Darner said...

Cute pic! Love the shoes by the way! Greenspan's book is The Special Needs child is wonderful and has been very helpful with my J-man. So glad you're feeling better. What a beautiful, beautiful little boy you have.


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