I have sooo very much to articulate, I find it difficult to navigate, not to mention know where to begin:
Since we've been talking cognitive testing, hearing testing, vision testing, visual-spatial testing, strategies-testing for Parker for the past several months, I could add articulation testing too. For him, and for me..AND three of his sisters. I feel like we are all being analyzed all the time by linguistics professionals, and I think my speech is actually deteriorating. But I digress....
John Tracy Clinic was amazing this summer. We learned a ton. Literally my spirit & brain was steaming at the end of each session. I needed a few months just to process what we witnessed and participated in. It was truly overwhelming/in-you-face-terrifying and magically healing at the same time.I will post later about that.
We also had Peej tested on his cognition while we were in the US this summer, because his french neurologist thought it would be more accurate in English given that he has shown a clear preference to English. (The phrase "Mother Tongue" takes on a new meaning when you are carried on your mama's hip essentially 24/7 for a few years, listening primarily to and trusting mostly her ...and when you come back from a near-death experience, I guess your chances of becoming a TRUE MAMA'S BOY increase exponentially. That's ok. But it makes sense that he prefers English, doesn't it?? Not to mention add 4 lively sisters in the bunch, an awesome babysitter, a very BIG, very commanding and yet gentle PAPA who speaks english, and you've got a recipe for ANGLO-FUN, right?)
Anyway, here's the low-down--
Cognition---Parker came in about 11 months behind (at 48 months, he tested at a 38 month old level). When I tell people that, they seem surprised. This is NOT reassuring (they seem to think he should fall in the 2 yr old category, not 3 yr old category).
Vision--I had Parker tested at UCLA this summer (cost a fortune) after seeing a very old, very self-assured French Dr in Paris before leaving who wanted to dilate Parker's eyes for TWO WEEKS at the beginning of the school year. I snuck out the door and tried to find people who agreed with me that he was CRAZY! UCLA was great, and fit us in at short notice, and tested Parker for a few hours. The answer to the learning-difficulty question can no clearly be answered that it has nothing to do with vision. YAY! I needed that :) Deaf and Blind at this point, seemed a bit much (sorry for whining).
Expressive Language--This is what Parker says. He scored less than a 2 yr old here in June and at John Tracy Clinic in LA this summer. I could die. But my mom and John are saying, "Hey, we can handle 2 yr old speech!"..my response is LESS THAN TWO YEAR OLD SPEECH for a TALL FOUR YEAR OLD is harder to swallow.
Receptive Language--This is what Parker is understanding by way of language---ie. what he hears & interpolates. Also scored less than a 2 yr old...This is also not reassuring to me,a s you can imagine:)
Apparently, after a cochlear implant, every 6months a child should catch up one year's worth of speech. This has not yet happened for Parker. He's been implanted since May 2009, was technically only deaf since February 2009, but had to re-learn what he was hearing as well as deal with the vestibular areflexia, and hydrocephaly and epilepsy, yadayada, so who really knows at what time he was hearing at a level appropriate for speech and language development, and at what point his body and brain were ready to start "catching up"to his peers???
Bilingualism--We were throwing Parker in french and english school, ASL and LSF (french sign language), and expecting him to absorb all he could with the premise that typical hearing kids use more brainspace learning 2 languages at once. It has to be good for a compromised brain (ie, his little brain damaged-noggin) to learn as much as possible in as many ways as possible. We tried this until this school year-Spetember 2012. At the end of last school year, the deaf educators at CEOP decided Parker was too far behind in all aspects, and that we should give him a break. Let's give him one language this year & see if we can close the gap in comparison to his peers.
SO, today, I am finally doing my paperwork for September, catching up on bills and everything. I am filling out really important, really late school documents and I am repeatedly asked to answer the same question in a few different manners: "HOW HANDICAPPED ISSSSS PARKER???"
I suppose one would have to quantify that while determining if he qualified for school assistance, special materials, or special schools, etc. AND IT IS HONESTLY SHOCKING TO ME EVERY TIME AND IN EVERY PLACE THAT I READ THAT PARKER IS GREATER THAN OR EQUAL TO 80% HANDICAPPED.
WHAT?!?!?!?!
MYYYYY baby is super-dooper-extra-specially-over-the-top-almost completely-who-knows exactly-what-percent----special? NO, I mean, of course he is special. I know that. Just like you and I are special. We are all special, aren't we?? In God's eyes? When face-to-face to learning things in this things we call life? But how close is he to 100% HANDICAPPED???
I certainly think he is FAR from that.
Is he a mere 80%??
is he 90%???
Is he 98 or 99%? How on earth could he be? He's walking, no running? He is hearing? He sees. He can say some things. He has a hard time saying others.
He can't carry a conversation like his twin can.
Is he even thinking complex things like his twin is? Or is he just thinking "train"when he says, "I want train."???
Anyway, its been hard today face to face with his "carte d'invalidité" (His invalide card)...and filling out all these school papers.
And I think, "Geez, how handicapped am I, if HE'S greater than or equal to 80%?????"
He certainly sees some things a heck-of-alot-clearer than I do. He has the big picture sometimes, and I am sure that I don't.
HOW HANDICAPPED ARE YOU???
