dstark :-* That is kind of funny, I failed my first one, too. Though my kids don’t know that. I am not even sure I told my husband. LOL
Do any of you have experience with your state’s Vocational And Rehabilitation Services agency for your disabled family member?
My son was just accepted into this program. I am a little confused. The letter we got said that they put accepted people into one of three categories. He was labeled most significantly disabled, which is the highest priority for the Voc Rehab people and means he will be seen sooner than if he was labeled significantly disabled or other eligible.
How is someone that can earn a driver’s license most significantly disabled? Or, do they give that label to those that are most likely to benefit the most from their services?
bajamm, I wouldn’t worry about the designation yet. And the most significantly disabled are not going to be working.
If you are mildly disabled around here, you lose benefits. I was told my daughter isn’t disabled enough so she will get no financial help if she wants to live in a group home. My daughter has an iq of 62. That was an unofficial label as far as I am concerned. If necessary, I am going to fight that.
My point is that designation may help your son.
I’m facing another challenge as a parent of a mentally ill adult child. His home called me a few weeks ago, because they were concerned about his laughing inappropriately. He shared with the staff that his voices were very funny (they apparently play tapes of Stephen Colbert) and “forced” him to laugh. He asked them NOT to call the doctor, but they called me - I had told them to alert me of any changes, because he decompensates VERY quickly. Of course, I called the doctor, who upped his meds a little.
He told the employee that he was upset that she told me. She explained her reasoning, and that her supervisor had said she needed to call me. The last time I talked to DS, he said he understood why she had called me and he wasn’t upset.
Well, apparently he told his case manager about the situation, and she reamed out the employee, saying they had violated my son’s right to privacy. The employee said, no, we have a release on file that he signed for us to talk to his mom. The CM said, “Well, I’m revoking it.” They informed her that she doesn’t have that authority - it has to be my son. So now she wants him to revoke it!! The house management agrees with me, and they are going to do everything they can to keep the release in place. My son’s doctor is going to call the CM, also. The CM had told me my son never shares what’s going on in his head, so I don’t think she understands how ill he is. I know she’s trying to help him gain his independence, but if he goes downhill, he’ll end up in the hospital again.
I’m mainly disappointed because I thought we had a good team put together, but now the CM seems to think I shouldn’t be included. I feel like telling the CM, “Fine, YOU drive 120 miles to get him to the doctor’s, like I’m doing now. YOU take him in when he ends up in the hospital, sicker than before.” What a messed-up system, to put it politely.
It really is awful, but common, to have team members fighting against you. So exhausting. And it’s almost impossible to enlighten them about their negative impact on the consumer or family. They can be very righteous. Sigh.
Oh no, MaineLonghorn. If it’s not one thing, it’s another, and just when you thought that you had a good team in place.
That case manager needs to have a better understanding of your son and his needs.
Yeah, I get madder the more I think about it. The fact that the house alerted me led me to have a really excellent conversation with DS about what’s going on, and then he agreed to share with his doctor, too. If they hadn’t called me, we would be in the dark right now - not a good place to be with a schizophrenic young man.
Have you looked into the UCLA Semel Center? They have some good research programs that are currently underway. It may be inconvenient because of location, however. I have heard rave reviews on the program. http://www.semel.ucla.edu/clinic/schizophrenia
I just saw this film on PBS:
http://www.pbs.org/independentlens/films/mimi-and-dona/
What happens when love runs out of time? For 92-year-old Mimi, who has spent much of her life caring for 64-year-old Dona, her daughter with an intellectual disability, it means facing the inevitable — the likelihood that she will not outlive her daughter and the need to find her a new home. Filmmaker Sophie Sartain, Mimi and Dona’s granddaughter and niece, respectively, captures the quirky and deeply connected mother-daughter duo at their most poignant crossroads.
It’s worth watching.
@oldmom4896 - Thanks for the link. It was certainly worth watching, although our story has been very different and I I was left with many questions. I would also note that this seems to be a fairly affluent and in spite of some difficulties, supportive extended family, compared to many.
In our state it is currently very difficult(some would say impossible) to get a placement for an adult, including an adult needier than Dona, unless both parents are incapacitated or dead. Our non-verbal S was placed during a brief window in which exceptions were sometimes made if at least one parent was over age 60 AND had significant health issues, and the adult child had cognitive or behavioral deficits far more severe than Dona’s.
I think this is going to be very difficult to change in a society with a fraying safety net, loosening of social and community ties, and increasing levels of tolerance for poverty, homelessness, “unfriended” elderly, low workforce participation, lack of inclusion for adults with disability, and reduced quality of life among those without current disability or with a mild disability.
Following. My S just got a late diagnosis that explains so much. Looking towards the future now.
Good luck!
I know progress is non-linear, and “we” are flying just above the treetops. But I have to say, this term seems promising, and it seems my DC is gaining altitude and may pull it out and not crash-n-burn.
For DC, it is more a case of maturing in all the pervasive developmental ways, and gaining some self-insight and acceptance of help and guidance. Not “figuring it all out for themselves” and rather accepting and considering strategies from the outside world has been a real turning point.
It has been a path of withdrawals- we are well into year two after transferring from a CC, and you could count on the left hand of a careless butcher the number of courses DC has passed- though they are brilliant. I am still biting my nails about probations since I think the school environment is the best possible place to learn these lessons, and still applying for supports- Social Security and Department of Rehab (thanks to advice from this community).
Have faith. There have been many times that I thought we were facing a black abyss. And now I see some sunshine and hope.
I am posting this because all too often I am despairing. It is good to celebrate the times of hope! We are all in this together. Thank you, and keep on keeping on!
I just found out about a program and thought I would pass along the info. It’s called “SafeLink,” and anyone on assistance (Medicaid, food stamps, etc.) is eligible for a free cell phone and 350 voice minutes a month - plus unlimited texting. I stumbled across it when I was looking at the TracFone website. I guess there are other similar programs out there. Why doesn’t this kind of thing get advertised? I feel like I’m constantly stumbling around to find help for my adult son. I’m glad it’s there, but it’s exhausting locating it.
I steal ideas and leads for resources from the websites of excellent advocacy groups…that do not service my geographical area. That’s how I would wind up learning about options such as SafeLink. Then I pass that info to local folks who need it.
Does anyone have experience with losing FA due to academic probation but staying in school due to special medical circumstances/disability?
We are looking at that possibility for the fall and it would help if anyone knows about that kind of situation.
I am sorry @rhandco. Can you look into retroactive Withdrawals from classes (so the course is deleted rather than a low grade- W instead of F)? We have petitioned to continue FA even though student was not making SAP (satisfactory academic performance) due to dropping or withdrawing from courses, therefore too few passed credits. I have no experience with Academic Probation issues, but would ask the Office of Students with Disabilities to either intercede, or to hook you up with the academic advisors and FA advisors who have a history with and understanding of special circumstances like these. In these cases, the individual administrators who work on them can make all the difference.
Anyone have experience with schizoid personality disorder. Not schizophrenia. DS, who has a history of major depression and anxiety, is in process of new testing/assessments (a full neuropsych pending) and psychiatrist has floated this disorder as potential new diagnosis. As I read about it the diagnosis certainly fits him in almost every way. He just withdrew from school for the 3rd time; he only has 7 classes needed to graduate. He’s home and doing very little - has not left the house in two weeks except to go to appointments but not in the least depressed. Happy to be isolating himself. Sad and hard for us as parents. Love to hear from anyone with anything similar going on. TIA
I’m sorry to hear that, @siemom. Are there meds for that? I know that the negative symptoms of schizophrenia are hard to treat, and they sound similar to those of SPD. Have you contacted your local NAMI chapter? They offer an excellent 12-week class that’s free. It was a lifesaver for me. Hugs!
Thanks MaineLonghorn! I love NAMI and have done their 12-week class which agree is awesome. Personality disorders cannot be treated with meds; some of them, like this one, are a constellation of traits and it’s hard to call it a disorder more than it just is what is. I do think having a dx is helpful in terms of knowing what to expect - or not - going forward. Just hard.