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Twenty-One Birthday Candles.....What Comes Next? Posted By: shannonj
Posted On: 04/06/2008
At age 21, many of our children on the spectrum will age out of the system. What does this mean for the individuals who have had their needs supported through school and programs for most of their lives. What is out there for them in the form of jobs, resources, support staff, housing, funding.....

My son is 13.....Twenty one can seem so far away at this point, but, on the other hand, I never imagined that I would have a teenager on my hands with needs so great.

What are your thoughts? Experiences? Fears? Ideas?

How can we advocate now so the system will be there in the future? Is money that is allocated for autism at the federal level addressing the needs of the adult population?
       
mercurymom wrote this reply on 04/06/2008
I guess I have a jump on you as we have no services here for John unless I pay for them. John is not in school, due to inability to get a vaccine waver. Due to this, I cannot get any support for him. We do qualify for respite hours, but have no respite workers that come to my area. Over the years I had adjusted to the fact that he will always be home with me, and in someways I have a jump on that concept. What I worry most about is when I am gone. I am working with another Mom to get a center for adults unable to live unassisted to have a home for the rest of their lives. It's a huge undertaking, and thanks to hurrican Katrina, I got to see just how hard it is to care for spectum childern day in and day out. We took in several after Katrina and ran a shelter, a just a small sample of what we plan to do in a few years. For now I take it one day at a time...and one project with John at a time...it does get tiresome never getting a break...but even a hour without him makes me feel so lost....so..I guess..in my own way..I have adjusted to what our life will always be...Cheryl :)

Motherof4 wrote this reply on 04/07/2008
This is a live issue in our house, as you can imagine. Daniel has just turned 16, so we have only five years. We've asked him what he would like, and except for the time he said he'd like to live in Hearst Castle, he says he'd like to live with friends. We're lucky, there are two parent-started organizations in our area to help people with disabilities get jobs and housing. Also, we're lucky because two of my friends have sons Daniel's age who are on the spectrum who might be willing to live in a group home together. We haven't worked anything out yet, but I recommend people start talking about any future changes in living arrangements with their kids years in advance, to give them time to think about it and adjust. Lucky us, we can actually ask Daniel what he wants and he can tell us. I know this issue can be a lot harder for people whose children can't tell them what they want. I still have no idea what funding is needed, these are early days.

kathy630 wrote this reply on 04/09/2008
My daughter, Michelle is 17, and I also worry about what is coming. First is that she is a girl and I worry about sexual abuse. Michelle is non-verbal and that is scary for the mother of a 17 year old girl with autism. We are exploring all options for housing and caregivers. I guess we're lucky. Ohio schools are very concerned about kids like my Michelle. God bless and Good luck.

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