[blindkid] questions in regards to acquiring an aid in classroom

Kim Cunningham kim at gulfimagesphoto.com
Wed Apr 6 13:52:31 UTC 2011


Tina,
My daughter was also diagnosed with seizure disorder (grand mal type) when she was 4 yrs. old. I must admit, I was more afraid of the seizure diagnosis than the blindness diagnosis. I had a lot of fear about what would happen if I weren't there when she had a seizure. Should I let her go swimming? Should I let her ride her bike? Should I let her spend the night with her friends? In the end, I discovered that if I stopped her from doing all the things she enjoyed, then what kind of life would she have? She never had an aide. The breakthough seizures she did have were at home. I was so scared, but I let her go. 
John Travolta's sons death was tragic. These types of things happen all the time. Part of life is the tradgey of death, which we can't stop, nor can we dwell on it because then we forget to live. Do we even know if his nurse was there, would she have been able to save his life? Did hitting his head cause immediate death?
Even if your son has a 1 on 1 aid, she may not be right at his side when he has a seizure and he could still fall. The good thing is there will always be people around him to help while at school. It is my understanding that people are able to detect "a feeling" when they are about to have a seizure. Maybe you can start talking with him about listening to his body and see if he can determine when he might be having a seizure. I was in the grocery store a while back when I saw a woman sitting on the floor. She told me she thought she was about to have a seizure. Of course, I sought help for her at that time, but she didn't allow herself to fall. Your son may or may not be able to tell. 
While we want to protect our children, we must give our children the room to grow. I don't know how many nights I thought about "what could have happened" to my typical boys. What if they wrecked on their motorcyle? What if they got a head injury skateboarding? The "what-ifs" are never ending.
While I'm sure you could probably "fight" for an aide, maybe you should think about whether you really want someone hovering over him all hours of the day. I hope my remarks don't make you upset. I only want to give you another perspective.
Kim Cunningham

--- On Wed, 4/6/11, Tina Egle <tegle at oakton.edu> wrote:


From: Tina Egle <tegle at oakton.edu>
Subject: Re: [blindkid] questions in regards to acquiring an aid in classroom
To: "NFBnet Blind Kid Mailing List, (for parents of blind children)" <blindkid at nfbnet.org>
Date: Wednesday, April 6, 2011, 7:35 AM


Hi all,


My son has Epilepsy which was diagnosed since he was 4 years old. 
Eventhough his seizures are under control via medications, we never know
when the sudden onset of seizures could occur when the efficacy of
medication could happen anytime. Plus his seizures are not noticeable,
sometimes he could just stand there in the middle of the hallway and be
dazed of like he was confused and did not seem to know where he was or
what he was doing.  He usually do not have grand mal type but rather petit
mal type of seizure with slight tremors or mild muscle twitches which
could go unnotice if all teachers and aides in the classroom are tied up
and busy with other blind or special need students, then he could
eventually fall down.  That is my main concern.  John Travolta's son died
while going to the bathroom alone in the middle of the night and his aid
was no where near him, and he died hitting his head to the tub while he
had seizure.


My question is that by Law, Can a parent ask for an individual aid who is
just for my son who does not have any other responsibility of other
students but just for him, 1:1 aid?  I have been requesting 1:1 aide since
he has been in school around 3 years of age and now he is 15 and we have
moved 3 times becuase all other school distracts had failed to provide an
appropriate education and finally we were able to prove to our recent
district that he needs to be in a vision school and he has been in that
program for 2 years and we have seen major improvement. But the district
is still unclear about 1:1 aid in the room.  I am undert  the impression
that a classroom aide is shared by many other students and 1:1 aid is what
my son needs just based upon his medical history.

Please let me know if by Law, Can I request 1:1 aid and have that written
in IEP?

Tina



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