A collection of stories from individuals with disabilities, families, friends, and disability service providers in Tennessee
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“If Seth had waiver services, everything would change. He would have something to look forward to and something to do.
“We have services now but we pay for everything out of pocket. ”
“I feel like if we got waiver services today it would be like being let out of prison.
“I can’t even remember how long we have been on the waiting list. During that time life has just been so hard. I worry all the time.
“It’s overwhelming to go to the school, and feel like you have to get down on your hands and knees and beg for services you know your children should have.
“That is probably the biggest worry of any parent who has a child with special needs. You want them to outlive you in one sense, but then you wonder what will happen.
“My biggest complaint is that people like us need help. Whenever they [policymakers] go to cut that budget it’s always the people with disabilities who get hurt by it. They’re the ones that need it. They can’t do for themselves. I don’t think that’s right.”
“With him [Danny] being 55-years-old, it’s not like it was when he was born. Now, there’s help. There are programs and suggestions, but when he was born there was nothing.”
“We have been through a lot of doctors, and we’ve finally found the ones I like. None of them say, “He can’t do this” or “He won’t be able to do that.” None of them have ever said that because I wouldn’t go back to them if they did.
“Why can’t schools treat people with disabilities like they have a future?”
“After a certain point you say this is what we are. Let’s just be a family and let’s just live.”
“I don’t want to burden Joshua, but at the same time I want him to know he is a part of his success story.
“I am not a planner but my sister and my niece wish that I was since they might be guardians one day. I must plan for the future care of my daughters. This is very hard for me.
“We knew our sons needed to live apart from us before it was a forced event. ”
“There seems to be resources out there but unless you are lucky enough to have some other parent tell you, you will go for years without knowing what is available.”
“It is easy to feel alone.”
“The key to acceptance is a willingness to be present with Jake, to join Jake on his terms.
“We've been on the wavier list for about 10 years with no help in sight.”
“Being the parent of children without autism, Tree challenged everything I knew of behavior, understanding, discipline, and development in children.”
“Our life is all about therapies, not play- dates.”