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From: Janet Formichella
Date:03/01/2014 10:03 AM (GMT-05:00)
To: epilepsy@yahoogroups.com
Subject: [epilepsy] Re: Question re working
I am very involved with our local autism society but they do very little for adults on the autism spectrum. Most families are very involved with them until their children get into high school. I have reached out to many parents of children on he spectrum who are high school age and older. It is very sad because I have found that these parents and families are usually dealing with depression and isolation. Since services end at 21 for persons with autism, unless the young adult has a high functioning Aspergers diagnosis, they are usually sitting at home with a parent who has quit their job to stay with their young adult. There is no more therapies, no more services, and no more hope. The hope these parents had for their young child has faded away as the child became a young man and the progress that they dreamed of never occurred. The differences between these young adults and typical peers becomes magnified as they age. I don't want to be one of those families.
I took my son for an assessment to our Bureau of occupational and vocational rehabilitation, but after conducting their assessment they denied him services as too low functioning - but with an IQ that is above the required score to receive help from MH/MR. So yes our young adults do slide through the cracks. Yes, there are sheltered workshops, but the cost to send someone there to work is extremely cost prohibitive without waiver funds for mental retardation.
I have always looked at my son holistically but the problems seem in surmountable. This is why i now want to disect each problem and address them individually. Even in school he seems penalized for his seizures. The seizures are complex partials, but generalize to tonic clinic seizures about once a week. He wanted to take wood shop but due to his medical condition the teacher wouldn't let him us power tools and wanted him to glue and hammer little kits together while the other students built furniture.
Another question is about disclosure. I know I will have to disclose his autism if I ever find him a job, because the autism explains poor performance in the interview process, but what about epilepsy. Did you choose to disclose this medical issue to a potential employer, or was it something that was mentioned only after you had been working.
Aren't service dogs about $20,000. That's what I was told by the service agency that I contacted. And I was told that a dog might not detect a seizure in advance, but would keep him safe during and after the seizure.
Sorry this is so long, but I still want to hang on to my hope for a positive outcome.
Thank you,
Janet
Sent from my iPad
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