Any parents caring for adult children? Let's share

@4fs, and all... Wonderful! It sounds like you have excellent support through the Courage Center. What a marvelous gift to your family. Was it available 19 years ago? I that when you were having the most difficult years? If this help was available that long ago, I'm amazed! We had and still don't have anything similar to help parents and adult children with these horrors.
My son at times puts himself in difficult situations due to lack of focus, too much focus on his immediate concern, or poor judgement. It makes sense to him at the time, but often, very often he creates his own difficult situations by pushing on without taking time to consider all the circumstances, possibilities. Tough for him and for me. I am the one who deals then with the overflow of garbage from whatever he did... That is lessening some now through our increased ability to understand each other. I'm learning better ways to help him understand what I'm saying or suggesting. Or, simply expressing it in his new language?

Whatever, we are improving much as I am quieter, listen without attempting to have discussions. Listen. That, my friend, can be so difficult, eh?

Glad to hear you're getting help and support and moving forward.
Blessings. Elizabeth

@ess77 Yes , he was actually married and they moved to Texas , he had the accident and we pretty much made them come back to Mn . Once here we got hooked up with the Courage Center and he and his dad went 4-5 days a week for different therapies for a bit over 2 years . Luckily his dad ( my husband) was with him and if he started getting crazy hubs was able to just bear hug him tightly and talk him down . Fast forward to 6 years ago, hubs was diagnosed with stage 4 cancer, fought so very hard , allergic to all types of chemo just passed on 7/5 . Not gonna lie I was very worried, but god knows and gave his brain 6 years to prepare… he’s/ we’re doing ok, miss that guy from years ago but very grateful this one is no longer in pain
Stay strong and patience really is a virtue 🙏🏻

@4fs My son is on Disability, has Medicare, does not qualify for Medicaid in the state of Missouri. His disability payment is slightly over the limit so we do not qualify for any help. I am living on Social Security. I have had meetings with The Brain Alliance of MO which didn’t really offer anything to us. The year he had his accident, 2023, I had to quit my job. He was married and living in Omaha but his wife left him & I needed to go pick him up & bring him here to Missouri since I am the only one helping him. His divorce is not final yet and the expense of that is outrageous. He has 2 children there, has asked for joint custody but he is living here in MO with me and cannot support himself. Thank you for all your advice. I appreciate the time you took out of your day!
Mlhaeger

My husband and I are 57 and have a 21 year old daughter with severe (Level 3) autism and intellectual disability who is - for better and worse - in adult residential housing.

I say for worse because the quality of adult residential treatment options has tanked severely. People aren't receiving the add-in support services they need. Our local disability rights organization is focused on those with lesser disabilities. They insist on believing everyone is capable of self-advocacy and needs no safe-guarding. Effective treatments are blocked because they might involve restraint, aversives, or removing clients from unsafe environments or removing objects from their grasp.

Basically, it seems like denial that severe intellectual disability exists.

So we're watching her get less healthy and less independent while we fight to restore reason to this system.

We still do all her medical care and take her on an outing every weekend with monthly overnights. And we also get called to step in when providers can't do what is supposed to be their job, like transportation. They can't get her to move because they're not allowed - thanks to the disability rights organization - to put hands on her. Her school refuses to write a fire safety plan to get her out of the building fir the same reason.

But the endless meetings and grievances/complaints to various state agencies thst seem to accomplish nothing are getting to me.

It's all tied up in the illegal immigration issue, too. So you have to be very careful with how you phrase even blatantly obvious problems. The state closed so many programs for less than the migrant-owned companies are getting away with now.

And, of course, many of these new providers are being shut down for fraud, so her services could disappear tomorrow.

It's stressful and terrifying, and we may need to move states to someplace that retains relative sanity. But we can't do that without forcing our state to pay for out-of-state care first.

She needs to settle before we follow, or we may face a decade or more without services. Autism and intellectual disability are pretty much the only services you can't just transfer state to state with Medicaid. It's insane.

And we have elderly parents we don't want to leave. I help Mom with bureaucratic stuff around my stepfather's long term care. My husband does a lot for his mom. We have siblings, but they have their own challenges.

And our adult son is still with us at age 25 and of very little help. He has dragged out his college degree forever in a desperate attempt to never grow up, refuses to get a part-time job, has to be told what to do to help around here (and still doesn't do it most of the time), He has one more course toward his degree. I had to take his last course with him for the last two weeks of it, or he'd have failed it. For a third time. I'm not looking forward to his next, more demanding course this winter.

There are no drugs involved. He doesn't have a new therapist yet, but he's medicated for ADD. And he has a very busy gaming schedule. 🙄 We're going to have to change the wi-fi password on a 25 year old and draw up a lease. It sucks.

Did I mention my own autoimmune-autoinflammatory stuff and my ascending aortic aneurysm? 😂😭

Caregiving isn't for the faint of heart. That's for sure.

So yes. Definitely right there with you on the endless caregiving.

Sometimes I dream of running away and becoming a bartender in some touristy destination. Maybe the Florida Keys. Hang out with the six-toed cats. 😂

But now that I've shared my mess... Have you looked into getting a case manager for your son? These programs are always much more difficult to navigate than thry should be. Possibly intentionally.

Could your son live in Section 8 housing with minimal home health supports?
https://health.mo.gov/senior-disability-services/special-health-care-needs/adult-brain-injury-program

@larak Have you ever spoken with your state or national representatives? I thought they were supposed to help.

@becsbuddy I have spoken with my Senator in our State Legislature.

It hasn't resulted in a meeting with the right people yet, but a referral to the right people was put in with Constituent Services.

I have a few Dept of Ed and Office of Aging & Disability grievances to file, just to make sure those right people know I'm not going away.

One blessing is that my experiences with my daughter's care have helped others. I've learned so much about the system that I can tell other autism parents what services they should be getting and who to ask.

My daughter's case manager wants to hire me ! 😂