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....
 
However...
 
... 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?). 
 
Everything.

 

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.

Alphabet Soup

Confession: I am an NPR junkie.

I am not sure when I went from cool hipster listening to the newest, coolest, obscure alt rock bands to cruising around in my Saturn VUE (the ultimate "non-SUV" soccer-mom-mobile) listening to such riveting programs such as The Splendid Table, Speaking of Faith, Car Talk, Marketplace Money, BBC Worldnews, This American Life, and so on. But so it is... I am a NPR junkie/intellectual elitist. What can I say?

Anyhoo. I was listening to NPR the other day and they were doing a program on OCD (obessive compulsive disorder). Now, I fell into this show at the tail end, and so I missed a large percentage of this discussion. And, to be honest, I was only half listening to the rest as I was driving J-man to yet another appointment. Nevertheless, my interest was peaked when a listener called in and asked the Expert Psychologist about her son who has autism. She stated that she had been trying for many years to get the doctors to add an OCD diagnosis as well, but was meeting resistance and wondered if the Expert Psychologist could comment. Now, of course, because I was only half listening I missed the first part of her answer... but my ears tuned into this part (which I am completely paraphrasing. Never have I wished for Radio DVR more. Expert Psychologist, please forgive my swiss-cheese memory, but I hope I recalled the spirit of your statement):

"... parents end up with a child who has what I like to call Alphabet Soup: PDD, OCD, ADHD, LD... all in the same child. But instead of looking at these as four different diagnoses or disorders, we should instead focus on this as one nervous system that functions in a particular way. And the individual problems in each diagnosis are actually a part of a whole neurological picture... where each set of behaviors no doubt influences other elements of functioning."

One brain. One nervous system. Not 4 or 5 different disorders. One brain that functions in a specific way, in a way that creates specific set of 'problems'. And those problems are not always neat and tidy in the way we "label" them. So, in order to attempt to capture the essence of this nervous system, doctors and educators rely on this Alphabet Soup approach. Of course, Alphabet Soup doesn't work. It doesn't work because these nervous systems are actually people, each which is unique and individual in its presentation of the particular challenges. But instead of crafting a carefully articulated story of specific challenges that one child may have, we get diagnostic codes and shortcuts and assumptions.

Which is why children have parents. And why we, as parents, must force ourselves to become absolute experts on our child. I cannot abdicate my role as the J-man's voice. We are coming up on his Big Evaluation and IEP planning for when he turns three, and I need to gear up and get ready.

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I have been told that the Big Evaluation is merely to qualify him for services. Essentially, the school district needs to know that he is delayed, and delayed enough to qualify for service. They will ask us questions about his development. They will test him on standardized tests measuring speech, language, sensory issues, and cognitive development (which I have a HUGE problem with, but that is for another post). They will add up numbers and 'quantify' the J-man. And they will, no doubt whatsoever, qualify him for the special education.

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Our school district has a designated evaluation team that does all the evals for special education. The reasoning behind having a designated team is a good one... you have experts in evaluation, who know how to administer the tests, and who do so in a somewhat systematic way. That way, all children who are tested are tested with essentially the same people, the same way. The hope is that by doing it this way, the results can be seen as reliable and valid. That his scores compare to other kids who have the same experience.

.

Except...

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... what does that actually tell us? That... when dealing with complete strangers in an artificial setting, the J-man can or can't do X, Y, and Z? That... with no supports whatsoever, my language delayed, crappy auditory processing, socially delayed and possibly autistic TWO AND A HALF YEAR OLD can or can't do X, Y, and Z?

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I guess if the goal is to to see if he will qualify for service, this format is a goldmine. However, if you actually want to see what he CAN do, and do well, this is not the way to do it. How will they really be able to know who he is and what he really needs? Can this team of complete strangers assess the root of his processing difficulties, his motor planning issues, and social needs, and come up with a valuable plan that addresses those issues in a meaningful way? Shouldn't THAT be the point of the Big Evaluation?

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So, I shall be putting on my game face and going in...