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Parents of disabled kids thread...

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Replies to: Parents of disabled kids thread...

  • compmomcompmom Registered User Posts: 8,073 Senior Member
    At first I pictured progress as linear but now I understand that the line of life for most people with a brain-based mental health diagnosis is more like a wavy line. And after dealing with the initial compliance issue, and the lost trajectory and all that stuff, it really is about acceptance and finding a new way to look at things. Still working on it, my kid is way ahead of me. Her experiences have made her an empathic person with a great sense of the absurd, and no matter what she ends up doing, I am delighted with her person. Just not with her pain.
  • ConsolationConsolation Registered User Posts: 21,450 Senior Member
    I just listened to a segment of the NPR WAMU podcast 1A regarding interactions between persons on the autism spectrum and the police. Very illuminating and informative. It was broadcast on Tuesday but is available through podcast.

    http://the1a.org/audio/#/shows/2017-08-08/when-people-with-autism-encounter-police/111745/@00:00
  • mom2andmom2and Registered User Posts: 2,118 Senior Member
    Thinking of you all and hope that things have improved for your kids. How is your son MaineLonghorn?
  • MaineLonghornMaineLonghorn Super Moderator Posts: 30,927 Super Moderator
    @mom2and thanks for asking. He's stable and happy. Not doing anything that we would call "productive," but I'm letting go of that concept for him. I think he still has symptoms, but he seems to manage them OK.
  • musicmommusicmom Registered User Posts: 2,482 Senior Member
    @MaineLonghorn , we're in a similar place with our DD.
    There have been enormous changes for her (and us) this past year yet the "doing something productive" remains elusive.

    Our focus last few years has been finding appropriate sup ported housing for her now so she could lead a more independent life than the one she had in our home.
    The first attempt last year began with great promise but disintegrated by end of lease due to roommate squabbles, lack of adequate staffing and issues w the lovely but old house that needed some large repairs.

    Since june, she has been sharing a newer single family home with two other young woman with special needs. The home is owned by the parents of one of the roommates; there is also a live in aide for security overnight.

    After 2 years, our DD has obtained a housing subsidy from the state that helps with her rent.
    She gets SSI as works a few hours a week also.
    We've also opened an ABLE acct to fund othe expenses. She has friends, a downtown she can walk to, a town pool, weekend peer activities.
    She is so happy and we trust the setting is safe.

    Still, we haven't quite given up on wanting more for her. Working on it though.
  • HImomHImom Registered User Posts: 29,231 Senior Member
    We just had a discussion about this with D’s new MD today. He said he’d write a letter in support for a disability application as desired. D is only able to be independent because we can afford To pay all her expenses. She does try to help some folks with projects but has never had more than sporadic part-time jobs with a few hours/week.

    D doesn’t qualify for disability under SS because she’s not worked enough quarters and was not declared disabled at a young enough age. She’s never had disability insurance and is uninsurable.
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