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…
