[blindkid] addition to Braille/school question

[Leah]

Eric,

John is 4 and has several diagnoses (SOD, CP, PDD, more) including  
"possible mitochondrial disorder." He's non-ambulatory and just began  
to functionally speak 3 months ago when he began CoQ10. At this point,  
the only thing that doesn't seem impaired is cognition and that has  
just not been tested. I agree with you that we should try for the  
maximum number of classroom hours tolerated. (I posted questions  
earlier about VI services but haven't seen any comments.) But - at  
this point I only have evidence that he can tolerate 4 hours, one day  
per week, and in a much more tolerant setting (in a mothers day out  
rather than PPCD classroom). His week also includes 2 private  
therapies, 1 TVI visit, and one playgroup. We reduced his schedule  
from 6 hours of therapies to find the tolerance point. He lies down  
for 3 hours each afternoon, and still, misses about a week each month  
to illness. This is a kid who can attend a too-stressful therapy  
session and abruptly get dark purple around the eyes, decrease in  
muscle tone, and start retching on the way home and then need to stay  
home for two days. When we increase his schedule, we get illness, and  
then have to stop all activities temporarily - which we want to avoid.

It's not really a temporary condition - unless if John gained new  
skills that became more familiar, such as socializing, independent  
locomotion by wheelchair, or just familiarity with class setting,  
perhaps that might make the classroom easier to tolerate. I could see  
him slowly increasing class time. Or maybe we will find ways to  
improve treatment and make change in that way.

The doctor (a resident) suggested a combination of classroom time with  
home services, but from what I've heard so far about our area, it is  
usually either home services or classroom-only. I'm going to look into  
how to request both.

I like the suggestion that you made to try to provide the pull-outs at  
home. State law in TX says that the TVI cannot visit the home after  
the 5th birthday, but I'm hoping that perhaps the TVI services or more  
could be partly at home. Now I think I need to learn the regulations  
and practice around here.

Let me know if I didn't get anything you said! And thank you for the  
input.

Leah


<<<Hi Leah,
I am a physician & in my subspecialty, I care for very sick kids &  
adults
from all over our state & beyond.
Most physicians encourage kids to go to school whenever they can - it is
really easy to fall behind quickly, & socially it is generally better  
for
kids to be in class whenever this is reasonably possible.
When kids are fully out of class too long, there can be a lot of  
anxiety, &
when it come time to jump back in, & despite efforts, there can still  
be a
fair amount of "catching up" to do with some concepts.
Clearly, there are times, when kids are just not well enough to attend
school, or not able to participate in a full day - in such situations,  
docs
will support what you are describing (though most often it is the  
parent or
school personnel who suggests this). Such a program is usually recommend
when there are physical limitations that, though not permanent, will  
affect
a child's performance for a more extended period of time (weeks or  
months).
As a general suggestion for trying to find the blest blend for a  
child, one
consideration would be to try to get as much uninterrupted classtime  
(which
is also normal socialization time) as possible & try to get the other
services (i.e.: O&M, TVI, OT, PT, speech - many of which are "pull out"
times anyways) in the home environment.
Best wishes,
Eric V>>>