Seeing Ezra - Part 1 - Jul 2, 2014

I've started reading book by Kerry Cohen, entitled "Seeing Ezra". It's quite a different take than what I was expecting - and I'll only provide my initial thoughts, as I'm less than halfway through at this time.

Having read Catherine Maurice's "Let me hear your voice" and also having read a book I've been recommending called "A real boy" by Christina Adams. I thought I had some perspective about how the parents of children with autism come to grips with the reality of an Autism Spectrum Disorder diagnosis. Piecing them together, both Catherine and Christina put their faith in the public system, and supplement with privately funded specialists. Both mothers struggle with the diagnoses, however they see this idea of "normal" or as I like to call it, "neurotypical" as their end goal. In the end, both parents "recover" their children. Or at least get to the point of Aspergers.
The long and short of it is, for both mothers, their children are able to communicate their needs, engage in self-help skills, and create social bonds with those around them effectively. How skilled they are, is left debatable.

Now, this is where Kerry Cohen differs. Mind you I'm only half-way through but this is what I've uncovered so far. (I'll provide you with Part 2 at a later date when I've further digested). Her son has limited speech, often echolalic, and often in short non-communicative utterances "red duck - red duck". He is unable to communicate to get his needs met. He wants music played a certain way, toys played with a particular way, and eats: pizza, cheese puffs, and milk. Nothing else. But he's happy. He's a happy, giggly boy, makes eye-contact, and laughs when you play jokes on him 3 year old. Kerry repeatedly says that professionals are trying to "change him", and "normalize him" and they don't understand. 

What I struggle with (and I'm sure I'll struggle with this throughout the book and in the time after) is the notion that, I don't believe professionals want to "change" children per say. I think professionals want to bring the child out of their box. (Something Kerry says doesn't need to happen - if her son is happy not involving people in his world, his life is likely to be easier and less stressful). I think, interventions are a parents choice 100%. What to do, for how long, how intense, to start how young - be it RDI, ABA, IBI, play-based, Lovaas, Verbal Behaviour, Early Denver. Absolutely parents should choose the intervention and feel comfortable in their gut at the end of the day that they're doing the best for their child - regardless of whether it's more or less than another parent they know. However, what I struggle with is: for a child with no communication (as in Kerry's case), he's unable to express whether he's happy or sad living in the world of his creation (arguably, he may never gain that capability). For me, whether he is integrated into a typical classroom at 5, 10, or 15 is irrelevant. Whether he functions as a 2, 4, or 6 year old is irrelevant. Can he communicate is paramount in my books.

What concerns me in this book is that for this little boy, he isn't able to let his parents know whether he's okay with daily changes. Whether he wants what he's offered, or he doesn't.
But more than that, his receptive language (language of understanding what others are saying), may not fully develop. Now, this is not to say that it isn't. And this is not to say that children who are unable to communicate aren't able to understand every word and intonation in someone else's voice. However, the inability to communicate may stop the understanding of language. 

I think if you do nothing else, establish a communication system. At least just some basics (help, key food, key activities, no, yes...). That way your child can let you know if thats okay. Recently in speaking with a mom, she told me that she repeats changes to his daily schedule until he says "ok" to ensure she's not making a choice that he doesn't feel comfortable with, or doesn't understand.

I'll let you know when I get through the rest. Its an interesting read - definitely not what I expected. Eye-opening for sure.