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ng or says sit down when he wants me to cuddle him in his toddler bed the way he laughs and runs all the way to school and how he belly laughs with joy in looking at a pigeon or an autumn leaf in the park or how when i scold him for running into the street or something else and i tell him he s not allowed to do it again and i ask if he understands he says with his lips quivering and his eyes batting okaaaaay mon petit mec a moi qui devien grand right before my eyes i love love love him mon petit mec posted by renee at 4 06 pm tuesday september 25 2012 how handicapped are you 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 posted by john at 4 16 pm thursday september 6 2012 the sound of silence is there a sound of silence i ve strangely thought about this alot is it too scientific or too philosophical all i have to say is that i ve concluded this if you have never heard sound there is no sound to silence but if you once heard sound and lost it i believe that that silence is in fact strikingly deafening ok i know there is wayyyy too much to catch up on things that have happened in the past 3 months that it s hard to know where to start this just makes me put it off longer thus the commentary on silence i m wondering if silence increases our patience isnt that what this is all about anyway how poor are they that have not patience what wound did ever heal but by degrees william shakespeare if patience is worth anything it must endure to the end of time and a living faith will last in the midst of the blackest storm mahatma gandhi he that can have patience can have what he will benjamin franklin patience is the companion of wisdom saint augustine all we need is just a little patience axl rose posted by renee at 10 00 pm monday june 18 2012 pediatric neuropsychologists test for delays but who s delayed i just got off the phone with a secretary for a pediatric neuropsychologist in los angeles i am trying to get parker in to see her while we are in la this summer going to the deaf camp for 3 weeks but i am reading the definitions of the testing i have just requested on my child thank you wikipedia kabc scale vineland scale nepsy and don t know why i am at all surprised they are testing his cognitive levels requested by his french neurologist but obviously testing for mental retardation and delay i just keep thinking he is still trying to catch up from being in that coma for 9 days but he s not i mean he is but it is in fact more than that isn t it dear god is it are you still there i know that you are i know that you are requiring me to be humble because i have not been i am paying the price i am sorry will i ever learn maybe not but i trust in you and you take me by the hand and lead me to very scary places it s confusing for me i thought you would take me only to warm safe places but this does not seem warm or safe or protected i ve been scared before but this is bone chilling this is hard cold stuff who scripted this not me that is for sure and i guess no one else suffering their hard stuff scripted theirs either i have trusted you with my life with his life and you have guided me i am just scared where you will guide me next still i take your hand cuz i have no choice it s hard today i m just sayin posted by renee at 10 13 pm tuesday june 12 2012 i cried for aida today i havent cried for awhile i began to think i had accepted my place in this story that i had accepted parker s place in his existence but perhaps not just yet i was so touched this morning by the fraternity i saw between the deaf kids in parker s deaf school that i was taken back my breath was taken away again i am reminded by the sweat and blood late hours and hard work this school and its professionals do for our baby soon to be very big 4 yr old boy and his comrades many deaf little precious kids in paris the school is preparing for it s end of year show and parker s class called jaune soleil yellow suns consists of 5 children aida laura yannis clement and parker they are planning to exposé how international their group is parker will be dressed as a cowboy of course he turned down the statue of liberty idea i tried to explain to him that he would be dressed like a cowboy like woody his favorite toy but he was slow to catch the spirit of the project let s just say aida has the most beautiful brown skin her mother is african or antillian her father is french she came to the group only this year and all i remember of the first several times i saw her was that she was scared and confused and crying today i spoke with her mom as she went into her individual speech therapy session and i went out her mother told me was she was doing well and was much happier at the deaf school than she was at the hearing school all of the kids do half time at deaf school and half time at ordinary local neighborhood schools i call them hearing schools she told me she thought it was so confusing for her to lose her hearing at 15 months to meningitis oh i nearly gasped the dreaded word but i don t think my heart skipped a beat this time i heard it but it did strike me with anguish my soul was reopened after some pretty good scars have set in her too her parents too i was instantly softened by their sorrow and their story parker loves her she is always smiling fun she s gorgeous and so petite her brown doe eyes go right through me and her sign for her name is done by having a closed hand by her eye with the thumb extended then turning it up and outward like eyelashes it s appropriate great choice sometiems the name signs are pure inspiration this one was right on when parker i came out of speech we also saw clement s mom parker spent all of sunday afternoon at their house for clement s 4th birthday he was so happy to see her he couldn t take his eyes off her then clement came down from his classroom it was the first time i d seen parker exclaim while running towards him with open arms meee ment it s how he says clement he gave him a huge hug as if it had been more than 55 minutes since they had last seen each other clement s mom had an intrauterine infection that they didn t even know about until clement was born and found he had been infected too soon after they realized he was deaf clement just had his 2nd implant surgery a few weeks ago he signs like a champion and i have no idea what he s saying when he solicits me it breaks my heart i can tell in his eyes he wants so badly to tell me or explain something to me he s got 2 hearing brothers he s as french as they come i have been closest to his mom from the beginning she just had her 3rd son went back to work and moved she s amazingly organized and on the board for french deaf education laura is a bright curly haired brunette of portuguese french origin she also has eyes to die for every time i see her look at me i can practically see the synapses in her brain hard at work she s getting it she gets the big picture and she s talking up a storm but she is coquine a little bit naughty as they say in french when i arrived on scene at ceop today the head therapist was discussing with her father why laura acts up during her individual sessions they were asking the question if it would be better if her parents did not actually attend with her because she works so great when they are not around apparently yesterday she said monkey and the deaf educator said no laura ce n est pas un monkey c est un singe she replied maman dit monkey the teacher was suddenly confused thinking perhaps her mom too was american like parker s then quickly corrected her saying no c est pas maman qui dit monkey c est parker she had learned this word from parker everyone laughed they will be a deaf multilingual group what s not to love about that yannis is a 4 yr old moroccan french boy with 2 other deaf siblings both of his parents are hearing today he mouthed and signed to me like i was just like everyone else but i m obviously much slower especially with french signs i honestly had no idea again what he was trying to say to me he does not have any implants he wears hearing aids but they don t help him much he does fantastically well keeping up with the group and following what is going on i am often amazed that he can t hear at all i think he is scheduled to get 1 or 2 implants this summer it will be a hard adjustment for him but no doubt change his life and his relationship with his classmates and his world he s obsessed with cars just like parker and clement did i mention his eyes they sear through my soul when he looks at me big and dark black the french motto is liberté egalité fraternité surprisingly i think about it a lot it is not dissimilar to the way of american thinking we just have differences in culture right sometimes significant differences but as i think of liberty equality and fraternity today i think of these little international deaf kids in a hearing world i think that all they want is the liberty to be who they are and to be accepted for that they want to be treated just like everyone else and they need brotherhood or sisterhood comradery that they feel in their solidarity at their ceop class rooms or in the hearing world too i am so thankful for ceop i cry i am so grateful for these big fighting spirits that live inside these little bodies with dysfunctional ears i love them i love their eyes i love their stories they sign to me o...