Monday, December 6, 2010

Mixed bag......really really mixed bag

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He said to me "I want to listen to 'Down By The Bay', yes." That's a 10 word sentence, not echoing anything before, clear as day.
 That's pretty amazing AND he was munching on a french fry dipped in BBQ sauce when he said it!!! We were on our way to speech therapy at the time and I couldn't wait to tell Cece (his therapist) about it. We've been talking about wanting to see Simon initiate more and deliver full sentences versus 'chunk' statements.
Then his speech session was delightful; full of pointing, identifying and following directions. He was dreamy.


Earlier in the day we had our first of two meetings (in three days) to begin the legal process of seeing what services Simon will qualify for from Oakland Unified School District when he turns three. It's a complex process that includes several assessments to see where he continues to carry developmental delays that could inhibit his 'learning' process in a school setting.  In addition to that we'll need to assess where he sits medically in terms of being able to handle the germ fest that a typical school might be as well as the energy output required for attending school (even a half day pre-school will be more than he's used to right now in terms of activity.

We went over his last progress report and no surprise, he's still globally delayed. Fine motor skills, gross motor skills, communication, play, socialization, pretty much everything. Not surprising or even disheartening just not so much fun to see it all written down on paper with those age range summaries at the end.
"Simon is operating at the 18-24 month age in terms of....."
"Simon is operating at the 15-20 month range in terms of....."

No fun. "no owwies, but no fun" as Simon likes to say.

Ok, I've seen it before. I know how seeing it all on paper hits and then goes to the back of the filing cabinet in my mind.  Then his caseworker says "You know, he could qualify for Status 2 given his delay, do you want to do an assessment for it?"
Status 2 is where services from the Regional Center would continue after he turns 3 instead of being cut off. However these services are based on a formal diagnosis of Autism or Mental Retardation.

Deep breath.

I don't think that Simon is anywhere on the autism spectrum. Not a big concern. But M.R..... (and that's still the archaic term that they use!)

His language processing has already been raising flags AND we know that he was given several medications when he was sick that can have serious cognitive side effects AND he had several dangerously high fevers (106F at one point) when he was in-patient and having septic infections, AND he was very very sick and required a ventilator when he was first symptomatic with heart failure.

So.... could Simon have some mental retardation? Well, technically he does right now if we're talking about the literal sense of the term. "the act or result of delayed mental capacity"  He is late in several areas. It's true.

Sigh. Big sigh.

I think it's important to have another set of trained eyes look at Simon. I signed off on the assessment. It's a 2 to 4 hour process and will most likely take place sometime in February. He'll probably love it. A new person, giving him 'fun' things to do, watching his every move. I'm not worried about that.

But really?! I don't even know what to write. I don't even know what to feel at this moment.
But, really?! Really?! This is going to hang out on our plate for the next couple of months/years/life?

This is Simon. Sweet, funny, loving, growing, changing, stopping strangers on the street with his smile and eye contact, Simon.

Simon who is living with and triumphing over Cardiomyopathy in ways more brilliant than the brightest star in a dark night sky.



Sighs and deep breaths.

All I got right now.


Anonymous said...

hi its simon's suegra" (citlali's mom) i just wanted to say I totally relate to what you are saying Citlali is also globally delayed and although I know she is making progress every 6 months reality hits me and saddens me :(.... She is still very delayed, yet we are making progress in the speech part and that may disqualify me to get into pre-k and services from the school distric...sad, sad, sad. I hope you get what you want from the school district and look forward to see you guys at the Y.

Sarah said...

I love reading about your bright star in this somewhat dark journey we're all on.
We'll be missing you, but plan on seeing you as soon as we get back. Hang in there beautiful mama!