What will happen when you're not around anymore?

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I'm a bit surprised there isn't already a running thread about support for spectrum offspring when their parents aren't able to help them anymore. Many of you will have children who grow up to need little if any help--but some of you have kids who need more understanding and care.

My mother died unexpectedly, and my father's health has deteriorated to the point where he's no longer able to support my adult Aspergers brother. I've had to step in as my brother's advocate and temporary caregiver. I've tried to imagine what would happen to him if I weren't here to intervene, and it scares the hell out of me. We're coping, and I'm working to get my brother supported housing that he can be happy with, but it's been a big, teeth-grinding fight every step of the way. The system here has support for people with developmental disabilities, but there's an IQ cut-off. Few adults with Aspergers would score so low, and certainly not my brother. Even navigating options that do exist is challenging. I've found it extremely helpful to network with the families in my community for advice.

So, parents, what's your hope for your children when you can't be there to accommodate their unique needs? Have you taken any steps? Are your other children prepared to step in?

My son is only 5 yrs old, and I worry about this all of the time. We were older parents to begin with, and he is an only child. I have decided that I have no way to foresee the future for my son, and to worry about something that is so far down the road is pointless for me right now. I am just taking things day by day and trying to help my son learn and grow in independence. I have a strong faith in God, and I am just resting in the assurance that God has a plan.

God Bless you for taking such good care of your brother! I hope you can get things squared away for him soon.

The best example I have ever seen along this line is from many years ago. "Floyd" was not autistic, but he had a very low IQ and could never have possibly done well alone. However, his factory-working father got him hired in as a janitor ... and when I first met the two of them, it angered me when Floyd told me his dad deposited his checks for him and gave him $20.00 per week. After his father died, however, we all learned those years of earnings were all sitting in the bank and earning interest while waiting to be sure Floyd would always have whatever he needed.

Yes, LeeJosepho, my husband and I are very frugal, and I hope that we will be able to have a small home paid for that will go to my son when we are gone. Then maybe he will just need some help keeping things in order. But, at the same time, I do not stop praying and hoping for my son.

I don't anticipate my son having trouble navigating his own life. Historically, none of the aspies in my family (myself included) have ever needed or been afforded any special supports.

I do anticipate working to ensure he is better equipped than I was for life. I'm more concerned about helping him finish his education so he can get a job where his unique talents will be appreciated than anything else.

Hey Countess, right now, I really have no idea where my son's future will go. He seems intelligent, but they did an IQ test on him at school and he tested in the borderline mentally ret*d range. However, he is fully verbal and speaks in full sentences and his communication is getting better all the time. He also has a hard time being quiet in class and staying on task. Now I am not so sure that the IQ test was accurate, but I just really do not know. He is only 5, so there is plenty of time to tell, and he seems to be progressing. But at the same time, I want to be realistic about his future.

angelbear, i am surprised about the test. it doesn't look like your boy has academic problems. maybe the test format was wrong for him?

AnotherOne, I know, I was kind of shocked myself. However, my son does have problems sometimes following directions. If he does things one on one with me, he seems to know the answers to things. I think he may have been distracted or he does seem to exhibit some ADHD symptoms. He also has dyspraxia which I think may have affected the test. He could have been distracted by the person giving the test because he is very interested in new people. Who knows. They did tell me that he will probably do okay with things that you can teach him that are static like letters, numbers, spelling, memorization. Things like that. It is problem solving that he will have trouble with.

I will probably have him retested in a few years, but I figure since he was only 4 when they tested him, then I will give him a few more years for his brain to develop. My heart tells me that the test was innaccurate, but sometimes I wonder because my son does seem to have so much trouble focusing that I am just afraid it will hinder his learning.

The thing is, he has an excellent memory, and he is learning more and more, but he is definitely not the "little professor" that seems to fit many of the children with Aspergers.

i am not going to go into a rage mode about evaluators who declare childs faith after one test so let me just say: keep your faith in your little boy, i am sure he is going to be fine.

Thanks! I do try to stay focused on what I am seeing in front of my eyes and not on some numbers on a page!

We have a special needs trust set up and guardians/trustees appointed. It's a far from perfect solution, but it helps me sleep at night.

I agree with this completely and I'm glad someone posted the sentiment. I wasn't able to come up with an adequate way to express this.

People who declare that things are beyond hope should always be suspect (unless you're suffering from stage 4 cancer, have catastrophic brain damage or something along that vein).

If that had been in place for my brother, it would have made my life easier! Because our mother died so unexpectedly and so young, nothing was set up to accommodate his needs. Our father buried his head in the sand about it.

The frightening discovery I made when I started all this was that there's no housing support for people like my brother. He wouldn't have been able to handle taking care of the house--aside from details of general maintenance, he doesn't know the first thing about paying bills or taxes. If I hadn't come back when our father collapsed, no one would have come. That's scary. He'd have fallen off the radar. Even if people wanted to help, short of adopting him completely, there's no safety-net built into the system here. I plan to sell the house (it's far too much for him to live in alone, and I won't be his permanent caretaker) and I'm trying to find some kind of housing solution for him that isn't just shelving him in a tiny apartment and expecting him to fend for himself.

I think one of the reasons those services don't exist is because parents, justifiably fearing for their kids, keep them at home as long as they possibly can. The system hasn't been pressured to find solutions, and when the parents really need to pass the torch, it's too late. Any adult Asperger with functionality at my brother's level is just going to disappear without a loud, stubborn advocate.

I know my family is probably your nightmare, but it's something that aging parents really need to think about.

Thank you for making us aware of the situation. Sorry you and your brother are going through this. I just hope things will be okay for us. I have to concentrate on the here and now right now, but it is good to know these things. Hopefully, you can find some assistance for your brother.

I hope you can find something for your brother. What a hard situationn for you.

I'm reminded of a YA book I once read, about a girl whose brother had a disability. Her parents were suing their obstetrician for causing the disability at his birth. She was very much against the lawsuit, because she felt it implied there was something "wrong" with her brother that needed to compensated for. What she came to realize in the end was that the lawsuit was really for *her*, because she would be the one needing to care for her brother when her parents were gone and she would need the financial support.

(I'm conflicted about the lawsuit idea now, but it was a very thought-provoking book.)

Maybe your brother is actually more able to care for himself than you and your parents have given him credit for.

People have a way of unintentionally serving as a hinderance to someone under the guise of "helping".

Why don't you talk to your brother about living on his own and listen to his perspectives?