Saturday, September 19, 2009

A River in Egypt?

This has been a really weird week. A highly emotional week.

It is hard to get a pulse on what I mean. I am not sure how to articulate it. A bit of a roller coaster ride of emotions, both bad and good. But what I can say is that something seems to be changing around here, and whatever it is... it feels Big.

On the downside, we had a re-evaluation with Dr M at Children's Hospital. This evaluation consisted of a lot of questions regarding the J-man's development, where he is at, what he is and is not doing... and some basic observations of him playing in the room. Dr M completed both the Vineland and the CARS (standardized assessments) and from both these assessments and his 'clinical impression' he has diagnosed Jonathan with "mild autism and significant apraxia".

Of course, the "A" word makes me absolutely sick to my stomach. It is such a loaded word, filled with a lot of scary, negative unknowns and terrifing possiblities. While intellectually I know autism has a very broad spectrum and that many, many people have been diagnosed with the big "A" and either 'come out of it' or been so high functioning that (with intervention) were able to lead great lives... but as a parent, it is still a terrifing word to hear. And it isn't like I didn't know this word might be coming down the pike... I think we have been running from this word since day one.
And what does our running from this word MEAN? Is it merely Denial... not wanting to accept what may very well be reality? Or is it something more? Why is it that a large part of my heart and mind that really feels.... believes.... that this is NOT autism? That this is something different, less easy to define, more specific to Jonathan. More based in language and motor planning, not socialization, not sensory. But on the other hand... is that just wishful thinking? Am I turning away from something true because I cannot look it in the eye? He has many of the symptoms... many, many 'red flags'. Is fighting that diagnosis about HIM or ME? If it is me... then I need to get over it. BUT... if it is HIM... then accepting the diagnosis is like giving up on his truth.
To add to it all.... Jonathan has had an amazing week. NEVER has he been more verbal... both with signs and vocalizations. I cannot list the number of spontaneous new vocalizations he has had.... word approximations for things like bike, water, cookie, chip, passy, etc etc. He is imitating up a storm... he even copied me making a gobble-gobble turkey sound WITH ARM MOVEMENTS! Sounds that a truck makes... vrrrooom... beep beep noises. We have NEVER heard this from him. He also started preschool this week and did wonderfully. He even sat for circle time and clapped his hands! He has been so engaged, so involved, so here. These might seem like simple, silly milestones to you, but they are miracles for us. Nevertheless, he is still so far away from his peers.
So how do I accept the big "A" with a week like this? Or rather, DO I accept it? Is my instinct to reject this diagnosis just denial or is it something more?

Right now, I am going with something MORE.

Of course, that might just be my denial talking.

1 comment:

Betsey said...

I enjoy following your blog. My son is also language delayed and had red flags for autism. His therapists from ECI were convinced he was on the spectrum somewhere. Likely mild, but still on the spectrum. He was just evaluated at the Child Study Center in Ft. Worth after a 7 month wait and she said she did not see autism. Yes, he is language delayed, but that was it. I trust her conclusion because she has 30 years experience and diagnoses a lot of autism. So what exactly are Jonathon's delays/symptoms? It can all be so confusing. I am still keeping a close eye on my son and he will continue with ST. He is also going to a preschool/daycare program 2/week that is church based and I believe that is helping him a lot. I am thinking about enrolling him 3 days a week. They say they learn best from their peers.

Betsey (mommy to Matthew)


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