What happens when we are too old to care for them ?

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I am in a very dark place right now, and worried about how or where my son will end up after my time (or when I eventually get too physically and emotionally unable to care for him).

What options exist for adults with severe autism, whose siblings or family no longer is able to or willing to care for them ? And when does one start planning for that transition ? Help !

Well, I don't have any answers for that, but I just wanted to let you know that you are not alone. My son was born when I was 40, and my husband 41. He is an only child, so this is a worry of mine that has been on my mind for years. I don't know if you are a person of faith or not, but my faith in God is the only thing that really gets me through this. I have to remind myself that God created my son with a plan and a person for his life, and that he will not abandon him. What happens when we pass away is really out of our control. I have told God that I will care for my son as long as I am physically able to, and then it is out of my hands.

I just try to take life one day at a time and help my son as much as I can one day at a time. I guess there will come a time when I need to make preparations for the future, but he is only 9 now, so I have no idea what his future will look like, so I feel it is too early now to make those plans. I just pray that I will live long enough to see him into adulthood.

Hang in there!

I am sorry you are in a dark place.

There is likely something for supporting and caring for where necessary, but what that would be varies by location. If you want to tell us where you live it would help get you relevant information.

you thought too much ! then will get their own life just like what we used to be ......

come on, from the other day I understood he's a toddler

le ridicule ne tue pas/héhé

http://autism-daddy.blogspot.ca/2012/05 ... ids-w.html

On the bright side,having a severely autistic child means that society will have to look after them.
If your child functions at the level of an 18 month old, they need a guardian, so even if you don't plan at all, you know the state will take guardianship when you die. The way I try to look at it is that the planning is to optimise the quality of their care/ life, not to obtain care. It's a bit of a stretch but that's how my positive thinking goes for this one.

I don't find it even remotely funny, but I am glad my worries and depression amuse you. Your ridicule will not kill me, but might well kill you one day.

Thanks for the link. How on Earth does one get on the boards of residential facilities ?

My son is still really young, and *a lot* could happen between now and adulthood, but I do worry so much about him. Even if the government takes over his care after I am nothing but ashes in the wind, I still want to make sure - like Autism Daddy - that if he is going to need supported living, then that he is happy there and likes it wherever he ends up.

Managing his care and happiness from beyond the grave, so to speak.

I'm not that poster, but I came to post a similar sentiment. And what I mean is that no one at your child's age could look after themself, but you don't know where he will be at age 30-40.

My parents spend a lot of time worrying and ridiculing me about what I would do when they died, they were rich in their earlier life so they imagined anything less than 250K a year income as hell.

Well they are dead now, both of them. I got nothing from them, no inheritance nothing. And I am still alive and happy.
I wish they had spent less time worrying about a future and more time having fun with me as a kid.

My own son is 5 and non-verbal, and I really don't see the point in worrying about a future that may never come. He is guaranteed to be more functional at age 30-40, how much more? I dunno.

For now I don't need more negativity in our life.

I'd just tell you to take things as they come, don't worry about a future that may never come to pass.

I assumed your son was an adult but then I realized he is still young so I assume he is under ten. My dad always taught me that worrying is a waste of time. Do not think about the future, think about now and focus on what you want to work on for your son to improve so he will live a independent life. Do not worry about his future or else you will drive yourself crazy and then when he is an adult and is high functioning, then you will think "I wasted my time worrying about him not being independent and what will happen when I am gone? I got worried over nothing. All that energy wasted."

It is understandable that as a parent you feel this way. Not sure how old your son is, but when my son was diagnosed at age 2.5, I made a decision. I have ALWAYS been a worry wart about lots of things. But, I made a decision, am I going to spend the next 15 to 20 yrs worrying about a future that may not come? Or am I going to spend that time loving and enjoying my son? I chose the second option. It doesn't mean that I don't slip back into periods of worry, but I quickly try to bring it to a halt and get myself back on the right track. League Girl's dad is right. Worry does nothing to help us or our children. When I find myself caught up in worry, I just try to turn it around by praying instead.

The thing with autism is that it is everchanging. I have read so many cases of children who were even severely autistic that made great improvements and went on to live independent lives. So the philosophy that I have is that I am "cautiously optimistic" about my son's future life. I do what I can each day. I try the best I can to teach him to be independent one thing at a time without overwhelming him. My husband and I also live very frugally and try to put aside money for his future just in case. We are not wealthy, but we do the best we can. I would hate to just blow through our money now and then realize when my son is older that he might have benefitted from a little extra money that we might have had. Our plan is when we retire, move into a small house that we can have paid off and then leave it to my son. But, the bottom line is......the future is out of our control. We could all die in a fire or a car crash.

Trust me, I feel your pain and anguish, I really do. But at this point, I think it is more helpful to your son if you just try your best to concentrate on the here and now. Maybe try to look at things one year at a time?

I agree with others it's too soon to worry, but it never helps me to try to force myself not to worry about something; I really can't.

I think in a lot of places when your child has a lot of services, he or she has a coordinator and they have a supervisor. They might tell you it's too soon but they should understand and be able to explain the process for getting on the waiting list for residential. If there isn't such a person, is there a coordinator at school? and if that doesn't work, myself I would try to track down one of the residential places, call and ask who referrals come to them from.

I don't know where you live or what services you are currently receiving, however it may be worth finding out whether you can access any of the services that your child may need in the future now, or at least in advance (e.g. on a respite or day care basis). Sometimes this is a possibility and gives plenty of time for your child and the staff/service providers to get to know each other so that if at some point in the future care has to be transferred there is a gentle and gradual transition.

Although it is too early to worry, it it not too early to plan. So it is great you are examining alternatives. In the US, if a child has an IEP, a transition plan must be put in place by 16 years old, but 14 or younger is strongly recommended. Many schools do not follow the rule, let alone the recommendation.
This transition plan accesses the deltas from where the child is today to different adult situation possibilities. This allows very specific life skill training. "Implementing Ongoing Transitions Plans for the IEP" by Pat McPartland gives very detailed list of skills. Many kids on the spectrum are to often under-estimated and/or over-protected. This helps deliver an informed reality check and path forward.

Are you saving up for your child's college? If so, then potentially you could use that to establish a special needs trust.

This scares my husband and Ioso much. He's trying to find ways to NOT die!
So far, we've got guardians in place, but that's about it.