http://www.bu.edu/sargent/about-us/our-publications/inside-sargent-2015/fighting-for-a-future/
More college communities would benefit from this kind of program.
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.
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?
@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.
Rather than send PM’s I wanted to just say hi to everyone and wish you the best. I am half way through the NAMI 12 week course and can’t believe how much I have learned. What an amazing organization! The volunteer presenters are doing an incredible job. The two women teaching our course do a Spanish language course in the morning then a second course in the evening for English speakers. I think the course should be mandatory for law enforcement personnel and high school teachers. So much suffering could be addressed sooner if mental illness was better understood by those who are most likely to encounter it first hand.
My daughter has responded well to medication and after 2 months she has full insight, or awareness of her illness. She has even said that she wishes she had been on this medication years ago, it has resolved many of her other symptoms. We’ve done a lot of hindsight regret, wondering why no one caught on to her symptoms sooner. She has returned to work half time and enjoys having something to do. She faces so many unknowns with respect to long term prognosis and has become frustrated with her perceived lack of progress relative to her peers. It’s going to be a slow rebuilding with lots of pauses along the way. She may try some volunteer work or extension classes to gauge her ability to take on more responsibilities. The UCLA program is very good and we are thankful she is able to participate. Just riding public transportation in Los Angeles is an adventure in itself, and in a month or two she’ll start going twice a week.
She would also like to rebuild her social life, but it’s hard to know where to begin. She has been attending a few volunteer and church functions but encounters mostly ‘old people’. I try to emphasize the importance of patience but it’s tough to be young and bored.
Anyway, I’m feeling grateful for the progress so far and for the members of this group who offered so much support when it was most needed. Happy Cinco de Mayo!
So so happy for you and your daughter.
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.
@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!
@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.
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.
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.
@mom2and, thanks a lot. It just makes me sad that my son’s world seems to be shrinking continually. He was such a voracious reader when he was younger and now he rarely reads at all. My dad got him a Kindle and told him he could order whatever books he wanted. I asked S if he’s using it, and his reply was, “Oh, I really like it! It’s such a comfort to me. I don’t actually read anything, but just having it gives me a sense of security.” 
The house staff is concerned that he’s not going out for walks much anymore, either. They said he has worn a circular path in his living room, because he paces so much. I’m honestly rather discouraged at this point.
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?
@HImom, I just emailed him about my concerns today. I asked if we could discuss it at my son’s appointment tomorrow.
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.
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.
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.
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
Thinking of you all and hope that things have improved for your kids. How is your son MaineLonghorn?
@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.