Accessing School Services, children with disabilities

This is a place where parents can interact and gain support for medical, emotional and ongoing issues with School.

Moderators: Mike Bartolatz, kwork

Post Reply
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Accessing School Services, children with disabilities

Post by Mike Bartolatz »

http://www.uveitis.org/kids/PDF/Accessi ... es2005.pdf

how to access school services for your child with disability
Mike Bartolatz
Moderator
rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

; )

Post by rtaunton »

One aspect of a IEP or 504 that has helped my daughter so much is having a vision therapist follow her through school. She has two different specialists, for the last 4 years. The first year, it was tough. We had to educate them about uveitis. The whole scenario of, she looks fine, she doesn't need my help. Then finally catching her on a day when she couldn't read without her nose up to the book, not to mention at a weird angle, finally brought some belief that she actually has a vision problem. So, the first 3 months were the hardest.

My daughters vision therapist has become a good friend and advocate for her. Her and my daughter order her school books in large print, or on cd's together. This is a free service for us, because it is covered by IEP or 504 status. They also help to make sure that communication between student and teacher is made clear. The specialist helped my daughter to see that she needed to type a letter to her teachers telling them about her condition. The days that are missed due to doctor appointments, and infusions. Taking work out of the classroom, and even being assigned a tutor during infusion week is another aspect of getting help through an IEP or 504.

I hated in the beginning to have my daughter labled. I look at it entirely different now. It is simply a communication and help tool to make it through the school years, that would be hell if we didn't have that kind of safe coverage.

My daughters vision specialist has given her, through the years, different camps to go to that were sponsored by the Lions club, or Oregon School for the Blind. She signed up for one last March that was open to those with vision disabilities, not blind. It really caught her eye. She had to get 3 letters of recommendation from teachers. She did everything it said to do, and found out in June that she is one of the 5 students that got picked. She is going to Aspen to ski for three days this December. She has never skied!

I just wanted to post how amazing asking, and finally receiving help can be. It took us two meetings to finally get the coverage. We were denied the first time. The word cataract is what finally made the coverage possible.
Renee'
Oregon
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

Renee',
thanks for sharing your experience with getting Alexa the help she deserves to make it through school.
that is fantastic that Alexa won the contest and gets to go to Aspen to Ski in December. do you get to go too?

the thing that strikes a raw nerve with me is that it took 'cataract' to be the term that set the ball in motion to get an IEP program started. Uveitis can be a much more sight robbing disease than a cataract and in Alexa's case it was until you got Dr Foster on your team to finally put her uveitis into durable remission.

wish you the best,
Mike
Mike Bartolatz
Moderator
rtaunton
Posts: 40
Joined: Fri Jul 09, 2004 7:53 pm

; )

Post by rtaunton »

Do I get to go, too? HA, is about what would come out of my daughters mouth! No, although her brothers both asked her if they could go as chaperones LOL She is going to have a great time with the 4 other kids, and their chaperones. What an experience.

As far as getting services, uveitis is not something people normally know about. If they don't do their homework, they miss the mark. It is just something we have to realize right off the bat, no one is going to educate us except us! Then we have to turn around and educate the ones who have the power to help. Not fair, but that is the way it is.

School starts Tuesday for most of the kids here. Wednesday for Alexa......

Weeeeeeeee :lol:
Renee'
Oregon
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Post by Mike Bartolatz »

and that is why you are here, to help parents maneuver through the cow dung called the Education system her e in the USA. the MEDICAL system is donkey dung.

mike
Mike Bartolatz
Moderator
Post Reply