I don't even know where my emotions and thoughts begin.
Why is it so flippin hard to find a summer program to accomodate my child? And its not the bipolar. Its the diabetes.
No summer camp is willing to take her. The school program can't afford to hire a nurse even if there was enough interest in the program to have it.
I can't afford to hire someone to watch her.
I found out that the city has a summer camp for special needs kids. Great! Or so I thought. I called thinking well we fit that criteria hands down. Apparantly, Jada is too special. Even they won't accomodate her. Because of her diabetes.
It just pisses me off. We learn to keep our kids alive in a four day hospital stay. And these people aren't willing to even learn over time how to care for them.
Certainly I can't be the only working parent in the universe without a support system that must rely on outside help to care for her special needs child. But I feel like it.
13 comments:
Wow Jennifer... That just SUCKS!
I hope you find some answers.
It amazes me, too, that we can be expected to be able to do this 24/7 with what they cram into our overloaded brains but people can't seem to be bothered to take on a smidge for our kids to be able to participate in 'normal' stuff!
I'm looking at things for this summer, too, wondering which things Bean has done for the past four summers she'll be "allowed" to do this summer!
Hope you are able to find that 'right' place for Jada!!
Sorry Jennifer. Wish I had an answer for you. Its so not fair. Praying that you find just the right place for Jada this summer.
This upsets me! I'm frustrated for you! Can the City really deny her? Isn't that discrimination? Shouldn't they be able to find the resources to care for a child with special needs at a City-funded special needs camp? Ugh!!! Can you take this further with the City? Perhaps a legal advocate from the ADA could help you? The fact that they're denying you seems so wrong, wrong, wrong!
I'm really sorry you're dealing with this. Surely, you are not the only working parent in your area with this situation. There has to be an answer! Perhaps the ADA or JDRF might know of some possible camps. Good luck! Keep us posted!
UGH...I am so sorry to read this Jen! That is ridiculous.
Very, very frustrating, in deed!!! That just sucks and I'm so sorry you are dealing with that.
What about a D camp? Or maybe a high school kid with D?? I don't know.... It DOES suck. I'm sorry!
Oh........
THIS ISN'T RIGHT!!!!!!!!!!!!!!
There has to be SOMEWHERE!!!!! Any program that uses a dime of taxpayer money is fair game -- this would include city programs.
Keep us posted and call on the ADA like you had to do last time!!!!
I think you should ask for it in writing and then if you are not already on SSI for her use that as proof you need it. It is hard to get SSI for kids but it is worth a try. So sorry. That is just wrong.
That SUCKS. I was an EMT and if she applied to my camp I'd take her in a heartbeat. I had a kid in my group who had 10+ seizures a day, and we didn't even think of saying no to him.
I know.
I see all these great art camps and writing programs and I just can't leave her there for hours without someone who knows what to do.
If there is a program through your school district, I would think that they would need to provide care per her 504 or IEP (if you have one).
Good luck, I hope it works out.
Um... I was under the impression that they have to accommodate you under the disabilities act-- especially if it's an school program?
Have you considered going here and calling them:
http://www.diabetes.org/living-with-diabetes/know-your-rights/how-to-get-help/
Yes that sounds like you and your friends who are in the same boat can arrange a summer camp just for the diabetic kids...there may be many more like you wanting something of the sort.Electronic Medical Records
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