Wednesday, September 21, 2011

Feels like I can least for two years....

Summer was completely insane.  I've also realized the blog title keeps me away from posting, as does the purpose of the blog itself .  It's like going to psychotherapy - people commit to going to therapy even though it's painful - because it's hard to come to a specific place, in time, when you sit down and  focus solely on your pain.  I think this blog has been a place I channeled pain, so I have a leeeeetle tendency to avoid it.  When things are good I don't want to be reminded, and when things are bad I have a hard time dealing with it myself, never mind trying to find the word to explain.  It seems easier to post when there is emotional distance from a topic, which seems to be a statement of the obvious.  So, here we are.

Both kids are 'back to school', including O who is attending a full four days a week in the public preschool in our school system.  The transition was terrifying to me - how would he handle it? would they offer us enough services? what if I had to fight them? The process to transition a child from Early Intervention to the public school system (when they turn age 3) starts AT LEAST 6 months before the child turns 3.  For me, that included attending a educational meeting about the transition process (including advocacy), talking to everyone I know who is even remotely working in the school system, researching educational models for kids with Fragile X, looking at alternative schools (just in CASE), then of course the school assessment and the first Individualized Educational Plan (IEP) meeting.  Because I am insane/neurotic/overly prepared (only when it comes to the kids, of course) I decided that O should have ANOTHER neuropyschological exam.  This was supported by almost no one ('most' people say they are done every 3 years and O's first and only was over a year and a half ago) but O's developmental pediatrician indulged me.  Thank you Dr. R.

Anything to do with regular trips to Children's is kind of sucky and depressing, regardless of how cool and awesome the hospital is.   And neuropysch/cognitive exams, well, they are the worst.  When you have a kid with disabilities, you end up 'watching' them get evaluated again...and again..and again.  It's pretty upsetting, frustrating, and depressing to watch.  I eventually learned to bail out of the Early Intervention ones (he does better with less distraction, anyway) but sometimes you just have to be there.  Watching him struggle to complete a basic task is heart wrenching, and I can hear the voice screaming in my head while I pretend to watch patiently "Put the peg in the hole! Put the peg in the hole! OH PLEASE JUST GET THE PEG IN THE HOLE!"
It was three weeks in a row of trips to Children's, but I'm still glad we got the neuropysch exam.  Although the scores from the school were adequate some were WAY off the mark (like the physical therapist who "wasn't actually at the testing, didn't meet him, but based his scores on prior test/observations..."  WHAT?? That won't fly with me, lady).  I really wanted the neuropsych to reinforce his IEP and support any additional requests.   The school has been nothing but wonderful, accommodating every request including additional services we hadn't requested.  That's very rare in a school system.  When I gave the director the new results, she told me that after they had had already planned on changing his plan slightly as Children's had recommended.  We were lucky that he turned 3 over the summer, which allowed him to attend their half day summer program for 3 weeks.  He got a chance to adjust, and they were able to see how he functions, his skill levels,  his likes/dislikes, and most importantly (for him), WHO he likes.  He was not a big fan of his aide this summer.  I knew after about a minute he wouldn't like her or her behavioral style (since then they have found an aid much more appropriate for him, that he ADORES).  O doesn't like people in his face.and I can best explain it is that he is like a cat - he'll check you out and then he'll come to you.  I must confess, Owen has a thing for hot chicks.  I can get him to do anything if there is a pretty girl involved.  He'll sidle up to MILFs on the playground who smile at him, hop up on the bench next to them, and smile charmingly.  And he's pretty open minded - age, hair color, skin color, I've seen him flirt with them all.

Finally, after 7 months of tests, evals, meetings, and site visits, it was time for his first day of pre-k. 
The worst part was his first 'bus' (van) ride to school on his first full day of school.  Sister B, Dad and I all walked him to the van - he ran to the van happily, we installed his car seat, buckled him, in, and kissed him goodbye.   He suddenly looked around the van and realized that WE WEREN'T IN IT, and as the door closes and he started to flail and cry.  We watch the van drive away, O flailing and his little face in the window, terrified.  We turned to walk back up the stairs I burst into tears.  My baby! He can't even talk! He doesn't understand where he is going!!! What is he going through??? Maybe I'll drive to the school and go see??? Bridget grabbed my hand and said "It's OK mommy, he'll be fine."
An hour later I was laying on my bed, depressed, imagining my poor son despondent that we have abandoned him and sent him to be cared for by virtual strangers.  My phone rings and it was the director of O's pre-k, and she said "It's Patty, everything is fine" (thank you for prefacing that, Patty).  "I just want you to know everything is fine, he is doing really well and has had a smile on his face since he walked in the door.  He's doing great and he loved snack time, he is a great eater!"  I smiled, thinking of my blond, charming, grinning boy, happily shoving food in his mouth, surrounded by friends and new teachers, and I exhaled.

1 comment:

  1. Bridget and Owen ROCK!!!
    As does Mommy, which is obviously where
    They get it from ;)


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