This is a very sad post, but i feel to share it with you. I went to a parents-meeting from Nicky's classroom yesterday evening. It was a nice evening talking to this parents and learning about their kids and the problems they face everyday. I found out, there are two kids in the classroom with a disorder called Neuronal Ceroid Lipofuscinoses (NCL).
Late Infantile NCL begins between ages 2 and 4. The typical early signs are loss of muscle coordination and seizures along with progressive mental deterioration, though afflicted children may show mild-severe delays in speech development well before other symptoms appear. This form progresses rapidly and ends in death between ages 8 and 12....
On my way home i just thought, what they must go trough every day, just seeing the child slip away more and more.
You ask yourself why? ...and then you go home, hug your (just) autistic boy in his sweet dreams and cry.....
1 comment:
The world of non-typical kids is eye opening, isn't it. I too have had those feelings of "just autism" compared to all that some are experiencing. Interesting, wanting to reach out and sad, isn't it. YOu wonder how some people do it, but then again, I suppose every MOMENT with your child is a blessing. Hard.
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