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    Joined: Jul 2014
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    Tigerle Offline OP
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    DS2, turned three in fall, has a major physical disability which involves brain and spine damage. He’s had six major surgeries so far and there is more to be expected. He uses a walker and a wheelchair, needs enemas and intermittent catheterization for bowel and bladder management and has a shunted hydrocephalus. So far, we know that there is additional cerebellar damage due to his apraxia and massive speech delay (between 10 and 20 words on his third birthday).
    And with all this, everyone agrees that there seems to be no cognitive impairment, in fact but for the language delay he appears to be as bright as his siblings. Since just before Christmas, he’s been experiencing a language explosion and has caught up by about a year within two months. The speech therapist told us that she has conducted tests and while his expressive speech is still very behind, in receptive speech he comes out about two years ahead. She told us to cancel all our appointments and take a therapy break until summer to determine whether she is still needed at all.
    Yes, we are over the moon about his development. But I can’t help looking ahead to when he will start school, and we may have to advocate for a giftie with a language delay in a wheelchair, in a country where until two years ago when the applicable UN convention was turned into law, all kids with major disabilities were steered towards special ed schools which went only up to 9th grade and protected workshops afterwards. O joy…

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    Hang in there, Tigerle! Sorry I don't have any advice to share, but it's great to hear your son's improving! I hope your family's all doing well -- you've certainly got a lot going on. Even if your school system isn't the most supportive, I know your son is sure to grow up with a loving family who will always look out for him.

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    Tigerle Offline OP
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    He's doing fine with the wheelchair and the bowel program currently works well (stuff changes, so you never know) but the first problem will be accessibility. The catholic school DS9 goes to and DD5 will enter this fall doesn't even have a ramp, let alone elevators. The ramp will be easy, and a first floor classroom may work most of the time, but the library is downstairs..and think they'd be game, but it would be the first special needs kid they teach, ever. Same with the preschool in our neighbourhood: they're game, they'd really be trying, but he'd be the first kid ever, the classroom will be at least 25 kids because the are oversubscribed...we may keep him in the special needs school for another year simply because I feel exhausted at he thought of all the work that would go into mainstreaming. And all therapies will have to be done privately then - not a financial problem so much as we have got good insurance but a logistics problem because of course I need to drive him everywhere, and it eats into both working and resting hours. At the same time, we are worried that at the special needs preschool, soon he'll have no one to talk to but the teachers - very few children are verbal there and they all communicate with all sorts of facilitated communication, including a simplified sign language, iPads, recorders etc. it's very cool actually, I love the place!
    They do have a speech therapist at the special needs preschool, but she's specialized in oral motor therapy for feeding disorders, not what he needs. I do feel comfortable taking a break, though. (I need one, too - love his therapist, but it's another two hours of my life back, every week). She explained he is Ina vocabulary expansion phase which typical kids experience around two ( kids on here probably nearer one!) where they soak up new words left, right and center and incorporate them into ever longer sentences, but without much regards to rules of grammar and syntax yet. And he is doing that just great on his own now, at an accelerated rate really - nothing for her to do, and he's even starting to pick up rules and applying them. In a few months, when he will have entered the phase where it starts to be all about rules, she'll evaluate again whether he is stuck with anything. He may catch up fully and speak like a typical child or he may not, but there is a chance for the former now.

    Last edited by Tigerle; 02/10/16 01:06 PM.

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