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Parents of disabled kids thread...


Replies to: Parents of disabled kids thread...

  • momsquadmomsquad Registered User Posts: 997 Member
    Thanks for posting the link Denise, that looks like an amazing program. I am curious what part time jobs the featured student is working. One big hurdle for employment is finding a job with enough flexibility to accommodate frequent medical/therapy appointments and other scheduling restrictions.
  • ItsJustSchoolItsJustSchool Registered User Posts: 1,974 Senior Member
    Well, almost 3-1/2 years later, my DC is approved for SSI! I am intrigued by these group living arrangements- not that I have much influence; but it really sounds great. My DC can function well with assistance on executive function- mainly follow-through on communications and on bureaucratic stuff, the kind of things that need re-visiting and gentle correction and care-and-feeding. That is enough to completely derail any endeavor, but with those supports, DC is able to manage. That supervised housing sounds like just the ticket, along with maybe a bit of additional supports.

    I would welcome hearing about it!!

    Also, I need to figure out how to deal wth the back payments- any advice?
  • MaineLonghornMaineLonghorn Super Moderator Posts: 31,724 Super Moderator
    @ItsJustSchool, congrats! Have you heard about the new ABLE accounts? They are 529 accounts (yes like college but for disabled people) you can start for anyone deemed disabled before their 26th birthday. You could put the back payments in the account and it wouldn't count against SS. I started an ABLE account based in Tennessee (Maine has not created one yet, but you can sign up for them in most of the states that have even if you're not a resident). My son loves it - each month, he puts a little more in the account and likes to hear how much interest it's earned.

    If this is doesn't work for you, I would contact SS and see what they say. I know there's a period of time after you get the back payments in which they won't count the money against allowable assets, but it's not very long.

    Yes, supervised housing is awesome! On Easter, they held a nice dinner at DS's former group home (he's now in an apartment run by the same agency). He signed up for it and walked several blocks to get there. It's so encouraging that he can do that kind of thing with no suggestion or help from us! :)

    Keep us posted and let us know if you have questions.
  • DeniseCDeniseC Registered User Posts: 1,069 Senior Member
    So so happy for you and your daughter.
  • HImomHImom Registered User Posts: 29,727 Senior Member
    Our D has a group of virtual "friends" around the world. She chats online with them and the positive is that they are in different time zones so she can generally find someone who is awake at the same time as her.

    Of course, it's not the same as in person friends, but it has helped keep her from being lonelier and more bored.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 31,724 Super Moderator
    @momsquad, thanks for the update! I am going to be co-teaching the NAMI class beginning in September. :)

    Only family members are allowed to take this particular NAMI class, but there are other ones for police, etc.

    It's great news your daughter understand she's ill. That will make her life so much easier.

    Please let us know how it goes!
  • MaineLonghornMaineLonghorn Super Moderator Posts: 31,724 Super Moderator
    @momsquad, how is your daughter doing??

    My son started acting a little manic and his thoughts were becoming more disorganized, so his doctor increased his meds - S readily agreed, so I think he realized something was off. We're still concerned about him. The staff at his house is keeping an eye on him. I'm glad S signed a release form so I can talk to the staff! I would be a nervous wreck, otherwise.
  • momsquadmomsquad Registered User Posts: 997 Member
    Hi @MaineLonghorn, That's good news that your son agreed to the medication change and need for intervention. After the 12 week NAMI course and reading countless research papers it seems the biggest challenge is medication compliance. I know that anxious feeling while you wait for the medication to do its work, hopefully it will reverse the new symptoms quickly.

    My daughter is doing okay, working retail part-time and taking one class through our local extension program. She had to drop from the medication clinical trial because the study medicine made her nauseous, so she will not be eligible for the injectable medication. She still participates in their twice weekly exercise/cognitive training study. The biggest problem now is her sadness at thinking about how her trajectory has changed from what she had anticipated after graduating college. "For of all sad words of tongue or pen, The saddest are these: 'It might have been!'". So the challenge now is to keep the depression under control and remain cautiously optimistic about the future.

  • mom2andmom2and Registered User Posts: 2,179 Senior Member
    Hugs to both of you and your kids. I hope both do really well. Momsquad, her trajectory can still get back on track (or slightly altered). Medication these days works wonders. I hope she finds the right mix and soon.
  • HImomHImom Registered User Posts: 29,727 Senior Member
    I'm so sorry, @MaineLonghorn. It's scary and frustrating when our loved ones are having their worlds shrink. I know that when D is tired from her chronic health issues, it is tough for her to be active for any length of time and she frequently rests on her bed. She's visiting us for my niece's wedding and yesterday we were celebrating my birthday. She was quite frank that she was exhausted because she had been vertical for so long (about 12 hours), since she joined us for breakfast and dinner, even though she was able to rest for quite awhile on her bed in between.

    I'm so sorry your S isn't enjoying reading any more. Do his doctors have any suggestions about what can be done to help him enjoy it again?
  • MaineLonghornMaineLonghorn Super Moderator Posts: 31,724 Super Moderator
    @HImom, I just emailed him about my concerns today. I asked if we could discuss it at my son's appointment tomorrow.
  • HImomHImom Registered User Posts: 29,727 Senior Member
    Glad you're working with your S and his support system. Reading can be such a comfort and helps my D feel less isolated. Having chronic health issues can be very lonely--D has found the internet helps her feel more connected even when she's unable to get out of bed.
  • MaineLonghornMaineLonghorn Super Moderator Posts: 31,724 Super Moderator
    Ugh, picked up S while ago and he wasn't wearing his glasses. He said he didn't want to talk about it. I said, "Well, you have to have GLASSES!" and he replied, "No, I'm fine. It's been 11 days and I'm fine." Then he demanded (his word) that I not tell his dad or the doctor. I called the staff at his house, and they said he'd told them he'd broken the glasses and would tell me about it. The woman said they are concerned enough about him that they are checking on him twice a day. :( I told S that he was putting me in a bad position. Not sure what to do. I did email the doctor that we're worried about him but that I couldn't share specifics at S's request.
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