Friday, July 23, 2010

The Middle Place

Ever hear the saying "When life gives you lemons, make lemonade" ?

Ok, so here's the problem with that statement. You see, when life hands me lemons, I really want to make lemonade. Really, I do. But see, I cut my finger slicing the lemons up. And then I get lemon juice in the cut, and boy does THAT sting! And then I get blood stains on my brand new white t-shirt trying to find a Band-Aid. Then, while squeezing said lemons, I inadvertently squirt lemon juice in my eye. In shock, I rub my eye with my lemon juice covered hands, which takes a bad situation and makes it worse.  I try (with my one eye) to find the sugar, I realize there is none. The sugar is all gone! So, in a hurry, I run out the door to borrow a little sugar.  I stub my toe on the door jam running out.  I arrive at your door, limping, one-eyed, and bleeding, asking for just a little cup of sugar. 

To try and make my lemons into lemonade.

The evaluation went well.  That is to say, we had it, and J-man was J-man.  Not J-man at his best, to be sure... but not at his worst either.  They tried to do some standardized testing, and did pretty well until he stopped complying.  He did what he normally does in a new, toy-filled environment.... basically told us all to bugger off and let him play. 
The Camarata's spent about four hours with us, which was very generous.  After observing, testing and asking us questions, this was what they had to say:
J-man does not have 'classic' autism....
... he doesn't just have a mixed expressive-receptive language delay either.  J-man is in The Middle Place.  The DSM-IV calls it PDD-NOS:  Pervasive Developmental Disorder - Not Otherwise Specified.  Dr. Camarata hates that label.  He says it has become a "catch all" for kiddos who don't fit anywhere else, and is almost worthless diagnostically. And as a diagnostic label, it is going away in the DSM-V (because it is such a mess). 
They feel that J-man's issues stem from a temperament that is excessively socially self-reliant and a general lack of desire for engagement.  He wants what he wants, when he wants it, and only his way.  To add to that, he doesn't have good attention directed to social messages.  These two things, in combination, lead to a lack of attention to language cues.  And lack of attention to words, and a lack of desire to communicate.  They said that there could also be an underlying language disorder at work, but until the interaction piece improves, they cannot be sure if these are two independent issues or if one issue is "feeding" the other.
And it is no doubt going to be a lifelong issue.
They did feel there is ability for "movement" on this "excessive independence" (with a lot of work), but this orientation to not engage, to be alone, is part of who he is.  It could affect all of his lifelong learning. 
Friendships (or lack thereof?). 
The Camarata's did give us a lot of advice, techniques they want us to start using, and a commitment to an on-going consultation.  They did say they felt a strict ABA approach was not appropriate, but some modified techniques might be helpful.  They cautioned about pushing language use too hard, and want us to focus on building interaction.
But honestly, I can't remember a lot of the advice and techniques.
Because I have lemon juice in my eye, my finger is cut, stinging and bleeding, and my toe is throbbing.
Fu*king lemonade.


Rebecca Smith-Darner said...

So sorry. It's what I'm afraid what the professionals are going to tell me about Jacob in about a year. Just from what I've read about J-man they are so much alike in many ways. Anyway, lots and lots of hugs to you and your beautiful, wonderful adorable little boy. Remember, he is still that same little boy you walked into the clinic with. Damn, I hate labels sometimes.

Leightongirl said...

I've got some ice for that cut. Or the lemonade. Thinking of you.

Penny said...

Labels, schmabels! Doesn't tell us anything about your son - don't let a label bring you down.

In addition to the Dr MacDonald, Communicating Partners information, I recommend also, "The RDI Book" by Gutstein.

Betsey said...

Sorry you are going through this Pia. Basically it just sucks. We all have dreams and ideas of how our kids are going to be. It is hard to come to a realization that it isn't exactly like you thought it would be but I guess that's life huh! Life never seems to pan out like we thought it would. Take time to grieve and then snap out of it and get an action plan together. J-man has A LOT of potential. I trust that you will get him what he needs and most important is to just continue being his mommy and loving him. He needs that the most right now.

Hang in there Pia!

Coco said...

Friendships come often when we find someone or a group with a strong interest in what we are interested in. Temple Grandin talks about this in her TED talk and it was inspiring to me when I was down thinking my child would never have friends. Don't get too down about the future. Enjoy your adorable child at every stage.

Anonymous said...

I just wish I could give you a big hug right now.

Carolyne Thornton said...

Hi Pia, I hate labels too, but one positive thing is that if you have labels then you can get support. My daughter was ascertained as having Intellectual impairment and since that process has received so much more support at school and has made great progress. I have also watched the Temple Grandin TED talk and since learning about Autism and multiple intelligences and diversity I realise that Autism (even though J-man has not been labelled with that) is not necessarily a bad thing. I'm sure J-man has some wonderful qualities that others don't have and even though it might not be evident right now, I bet in his life he will amaze you, and the fact you have this blog and what you write shows how lucky he is that you are his mum.

Mummasknow said...

I love your posts, they make me laugh, and cry. I feel your pain too.


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