Originally Posted by Ruthla
Welcome back to MDC Bonnie!!!!
I'm HSing a child with ADD and emotional problems, but my DD's needs and abilities are completely different than what MJ is dealing with. The last time we chatted MJ wasn't able to talk- is that still the case?
The only thing I can definitely suggest is to read to her a lot. I can't give any more specific advice without knowing what her current abilities are.
Thanks, it's nice to be back
MJ is now 6 and we have to declare HS or Public school here in FLA. I really want to homeschool her as I think they will tell me she is *too functional* for a fulltime para and I have zero confidence that they can train her in school. Plus we have had 3 teachers in the last couple years arrested for abusing non verbal special needs kids.
Here is the short rundown on MJ for everyone.
She has a rare type of brain damage called Polymicrogyria (PMG) and pachgyria it has to do with the way the folds in the brain are forming in the second trimester, they don't know why it happens, but in MJ's case they are pretty sure it was the drugs and alcohol. Because of this brain damage, she has:
(Hypersocial, low functioning [so many ppl tell me that our neuro is wrong and she can't possibly have it, sigh] she scored 5o+ on the Autism Behavior Checklist)
affecting mostly her left side (her brain damage is on the right)
she's been on a feeding pump since she was 15 months old and most likely always will be
*Vision and hearing affected
on the left side
*Global Developmental Delays
(She says a few single words clearly, more that only I can understand, a LOT that no one can understand, including me, frustrat8ing for both of us.)
*Auditory Processing Disorder
and the following that are not a part of the PMG/Pachgyria
*Fetal Alcohol Syndrome
* Damage to the soft tissue near her spinal opening that mimics Spina Bifida
*No control over bowels or bladder may relate to above damage
I do use sign with her, but she has a hard time with it (physically) and she still won't string words together at all only twice has she used three words together and only once was it an actual sentence. Kids with PMG usually have some level of mental retardation, we haven't had her tested yet. I have been unschooling, basically trying to teach whatever I was doing (for example we go to Animal Kingdom at WDW 3 or 4 times a month) so before we go I will brush up on facts on a certain animal and tell them to her, but she never responds and I am not at all sure that she is getting it. I've also been doing a lot of self help skills, she still can't dress herself, brush her teeth, etc....I've also got Before Five in a Row, but that is way over her head. We do a lot of trying to learn objects names, learn the alphabet, numbers, etc....so far, no success at all.....
So I guess my question is how do you follow a kid who is clearly way younger than physical age....on a good day she might be 3 (although every three yo I know talks better than her, dresses themselves, is potty training (that may be physical though)) I am feeling a little discouraged, she is clearly never going to be a workbook sort of kid, but how do you get enough progress to show them at the end of the year for evaluation?
Sorry it was so long....