I have so much to write about and not enough time. Class starts in 43 minutes and I already lost one full post this morning. So this will be the short choppy version.
Elias's first IEP meeting--that he did not attend so that we could attend more fully-- went well. No big surprises from his initial assessment. Nick and I felt like they got an accurate picture of both his strengths and needs. And his goals for his first school year seem realistic.
I should be able to meet his new teacher on Friday, fill out more paperwork, endless paperwork, and enroll Elias to begin preschool on Monday.
Oh. My. God.
Pre-school??????
We were just in the NICU yesterday, holding our hands on his tiny head.
After spending the past three years waiting for him to develop I am just now realizing that developing means growing up and leaving his baby clothes behind.
(OK so he still fits into some 12 month shirts but...)
For his third birthday, we converted his crib to a toddler bed, his "big boy bed" and he has already fallen out twice while sleeping without waking up. And once while holding on to the end bars and jumping up and down. He fell over backwards and rolled off while Nick and I sat on the floor watching, unable to react in time to catch him.
He just looked up and said, "Elias fall down," with a smile.
God, he is resilient.
During our radio interview today, to raise money for the Children's Hospital, the on-air personality for KASH for Kids, named Goat, asked Elias, "What does a goat say?"
"Baaah" he said, on cue, into the microphone. So proud. Endlessly proud. Elias talked a little bit more about cows, trucks and escalators in his hoarse hard to understand voice before insisting on crawling off to explore.
Goat asked me about his birth, his NICU stay, and what we have learned from the process. He asked me what my greatest fear was now. I answered that people would only see the walker or the boy who did not make eye contact and not the spirit of Elias.
After the interview, a doctor from the Pediatric Intensive Care Unit told me that as she listened to my answer all she could think about was that she, and in her words, "everyone in the room" saw when Elias entered was spirit.
Not his Cerebral Palsy. Not that he is visually impaired.
Not his new label on his IEP: "Multiple disabilities."
Just a little boy who shines. And chases escalators. And says, moo...
This post really cuts to the heart of what it means to parent any child. That desire that others see the real child, not a preconceived notion, is so strong.
That's one of my main goals as a teacher, to see the real kid.
That's what I want others to do for my kids. I don't want them to see just the learning disability my son has or that my daughter is overweight and struggling. I want them to see my kids' dry wit and creativity, their love for our family and their deep compassion for folks littler than they are.
Great post, Christy. I don't often tear up while reading blogs but this post has caught me just right after a couple of extremely tense and scary days. Things are getting better and your words are resonating in my head right now.
In a good way.
Posted by: paige | February 08, 2007 at 03:56 PM
How could you not see his spirit? It outshines most rooms! =)
Posted by: Glyn | February 08, 2007 at 04:07 PM
Christy, we can see his spirit...and all we see are still photographic images of him. I can imagine how it must be amplified when someone meets him in person.
I can't believe he's starting preschool!!! We set KayTar's year-end goals on Tuesday (because she turns 2 this month) and I felt so strange about it!
Posted by: Kyla | February 08, 2007 at 05:02 PM
His spirit shines pretty brightly - I'm betting he won't have much trouble wrapping folks around his little pinky finger with his charm ;) But I get your worries. My biggest worries are social ones too. I don't worry about once he's grown, but about how he'll get there. What it'll be like to know he's not "as good" as most in soccer, what happens when he gets pushed and falls in the hallway in middle school, stuff like that. He'll survive, but the protective urge is huge.
Posted by: Sara | February 08, 2007 at 06:11 PM
Oh Paige and Sara, those are my biggest fears-- Elias being hurt (intentionally or not) by children and teachers who only see difference.
And middle school, ugh, I can't even go there...but I will, I know.
Back to the present, where it is safer for now, the PICU doc also told me that she didn't recognize that he was visually impaired. And she's a doctor. And the part of me that doesn't want his differences to jump right out couldn't help but smile at her confession.
Posted by: Christy | February 08, 2007 at 11:51 PM
Great post, sis. After our recent trip together, I can definitely affirm that there is a lot more to Elias than the surface. One of my favorite discoverias was that he seemed to be intentionally annoying Tess. Seems like a strange thing to enjoy -- your own daughter's annoyance. But for me it was such a clear sign of the spark and inner life Elias has. He may not communicate is as clearly as others his age, but there definitelyis a lot of fire and curiosity behind those amazing blue eyes.
Posted by: Andrew Everett | February 09, 2007 at 07:16 AM
that is my biggest fear too, that people won't take the time to get to know R - that they will only see the problems.
our IEP isn't until the 23rd. Why are the days going by too quickly?
Posted by: Tracy | February 09, 2007 at 08:29 AM