Who worries about their child's future?

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I worry a great deal about what will happen when Matthew's out of school and "on his own". I don't know if he'll ever be able to live on his own. Right now we're starting to make a will, and I have no idea who to name as guardian. We will probably end up asking one of my husband's siblings--but what I don't think my DH understands is that while his family may be willing to be a guardian, they may not be able to. And I don't really want to ask any of our friends up here because it's a lot to ask someone, will you take my kids if anything happens to us if the kid is NT--it would be even MORE to ask someone to take a child with special needs.

ALL Matthew wants to do is watch TV or play on the computer. That is IT.

And he has no idea how to carry on a decent conversation with anyone. How can he get along in the world if he can't make himself understood? Who is going to want to be his friend or girlfriend? Is he destined to be alone all of his life?

My dad does.
I have to tell him I'm ok
and I have a little job editing
video.

I don't understand your apprehension. Are you worried that he wont be able to get a job? Or is it just that you worry his lack of socializing will make him unhappy?

I am worried not so much about what will happen when he's an adult, but what will happen after my husband and I are gone. I don't want him to end up in some terrible adult foster home where he's abused or neglected. Neither my husband nor I can think of anyone with whom we'd feel completely comfortable leaving our NT kids should anything happen, let alone our AS son. I just want him to be happy and safe; a career and a spouse would be great, if that's what he wants, but he's young yet and I'm not sure what my expectations should be. So for now, we're talking safe and happy.

I think those same thoughts and worries played on my mind when my daughter was younger - she's changed and grown so much - and she's so independent in her own way, I don't worry like THAT.

But I do understand why this is something that's really eating at you. It's got to be a very real concern for any parent of a child with a disability. You say he doesn't WANT to do anything - but is he capable of taking care of himself to any extent? Does he require constant supervision and assistance? If not - maybe you can begin looking at some sort of assisted living facility. Not a nursing home, but a home for disabled adults that has supervision and assistance but aloows the residents to be as independent as they are capable of being.

There has got to be some sort of support for people like your son - and if he becomes an adult and cannot work because of his disability he will probably be on some sort of assistance. I believe that most of the government assistance offices have departments that deal with disabled adults - they would also provide services that he may need like transportation to doctor's appointments or therapy.

If you begin looking at ways to help him become capable of living as independently as possible - you may find that he will be okay 'on his own' (with assisted living and supervision). Plus it will help relieve you of a huge amount of stress.

You said in another thread that your son is 11.

In that case, I really wouldn't worry about it. If he's only 11, then it's understandable that he wants to do non-productive things while he's young.

The only advice I can really give is not to let your preconceptions of autistic people get the better of you. If you keep on worrying that he won't amount to anything and assuming that he's not going to be able to cope with life, then it will reflect in how you treat him, and only increase the chance that he'll end up that way.

How old your child is matters with this. Remember that our kids are on a different maturity scale, but they DO mature. Most kids would rather play, especially in the middle school years. That alone shouldn't be a worry. My guess is that you are combining that with the other little things you see. But realize that while he may have the laziness of a typcial middle schooler, he may be more like an 8 year old in other ways, and it is watching the combination that may be freaking you out. All of it can change. Don't count him out yet.

We are fortunate to have quite a few relatives that I feel comfortable could raise my kids, if it came to that. And I am convinced my son will be employable. I know that not everyone with AS is; if a child is lower functioning, one may need to realistically prepare for him to never live independently. Be careful to base that preparation on fact, however, and not speculation, and always keep trying to make your child thrive. Odds are just odds; there is often a way through. You don't give up on looking for that unique way through.

Last edited by DW_a_mom on 13 Mar 2010, 8:50 pm, edited 1 time in total.

Matthew, thank God, is potty-trained, and he can dress himself and feed himself. He can set the table, and we're working on making up the bed. He does need to be supervised when we're out and about. One other thing he's stopped doing is running away from me while we're shopping.

If Matthew can't work due to his autism, he'll probably wind up on SSI. Right now I don't have any idea where to look as far as assisted living for him is concerned, and I might have to put him on a list NOW to get him someplace 10 years from now.

We have Medicaid and private health insurance that help pay for Matthew's therapies. However, we get Medicaid through a special waiver that allows parents of "medically fragile" kids to qualify for Medicaid even when they make too much money to qualify outright. (If any of you have heard of the Katie Beckett waiver, this is what we have.) Every year, we have to submit paperwork showing our income and assets, and Matthew's pediatrician has to submit paperwork explaining his condition. Twice since 2003 (when we first qualified) we have been denied Medicaid. Once was when the criteria in our state were changed and nearly 2,000 families lost Medicaid as a result. We began the appeals process and fortunately, we were reinstated. The other time was when we turned in paperwork to the wrong place, and when we turned in paperwork to the right place, it was turned in too late. It took me e-mailing the head of the division to get our Medicaid reinstated.

I'm in school right now so I can get a job to make enough money so we won't have to rely on Medicaid again. I am tired of being held hostage to a system that depends on funding that may or may not be there. Our state is experiencing a severe budget shortfall right now and several counties are cutting their education spending. I fear it may only be a matter of time before the Medicaid program gets cut.

My husband makes about $50,000 as a government worker. *Every* time he has tried to get another job or get some sort of lateral transfer, it has not worked out. The only way I know of to make sure that Matthew has what he needs is for me to go to work. But school has proved to be much more difficult that I anticipated. I'm in court reporting/captioning, and I cannot advance any farther in the program until I pass two more speed tests. I write at around 100 WPM. The first certification test of any sort I can take is at 180 WPM. And I have been stuck at 100 WPM for over ONE YEAR.

I keep thinking that everything would have been OK if Matthew just didn't have autism. Maybe I could have stayed home and been a full-time mom and enrolled Matthew in Boy Scouts or Little League or whatever. Instead, I wind up taking him to speech every week and worrying about if he'll be able to live independently. It wasn't supposed to be like this.

I think Matthew, developmentally speaking, is more on a 7-to-8-year-old level than he is at an 11-year-old level. So yes, it shouldn't be surprising that he'd rather play. Heck, I'm 46 and *I* would rather play!

He's going into middle school this August. His current teacher has been very pleased with his progress; his handwriting is MUCH better and she says he loves math. While I probably know Matthew better than anyone else because I'm his mother, I am also not the most objective person where he's concerned. I often say he's too smart for my own good. The #1 mistake I often make with him is that I underestimate him.

One thing he does at church that he enjoys is cleaning up after communion. We take communion every week as part of our service. After communion is over, Matthew and my husband help to wash and put away the trays. It's a good "niche" for him. He is also very good at keeping track of schedules. Perhaps he should be someone's special assistant when he grows up so that the person he's assisting will always be on time.

You are not alone. I worry so much about my son too as he is an only child, and I had him when I was older (40) to begin with. If something happened right now, I know my sister would take care of him and do the best she could. It is when we are gone that I am concerned about. I too cannot even think of him in a group home where he is abused.

My son is almost 5, so I know I have a long way to go. I am actually just trying to focus on the here and now and what I can do today to make him be more functioning. He is also potty trained, and can feed himself. Still working on the dressing himself. My son could care less at this point that he really doesn't have any friends. So yes, I just wonder how we will ever be able to make it in the world like this. I am okay with it if I need to take care of him for the rest of my life and then after that I guess it is out of my control..

With all of this being said, my hope does increase as time goes on. I guess in the long run, if I can teach him the skills needed to be independent, and encourage him along the way, maybe he can find some type of work.

My son does not like to do much of anything either except listen to music, watch videos, he does draw a little, and he likes to go for walks. That is about it. He doesn't play with legos or action figures, he doesn't try to take things apart to see how they work, none of that. He does show an interest in reading, so maybe he will do ok in school

The other thing I have learned from reading cases of autism and from Wrong Planet is that so many individuals with AS do seem to find a way to make it. So that has given me encouragement. I am working really hard these days to have a more positive outlook and to not give up hope on my little boy.

The other thing I think about is that there are no guarantees in life, and even if I had a NT child, they could become involved in an accident that could leave them disabled. So, I guess we just have to do the best we can and leave the rest to God.

Hang in there!

Facilitate the math. There are not that many people who enjoy and are good at math, and it will always be needed for a variety of jobs in science, engineering, finance, and business analysis. You might want to look around for computer games he can play that allow him to "run" a business or something. If SimCity is still around, that might be interesting to him too.

If you allow him to get as smart as he wants in the areas that interest him, he'll probably be able to support himself. Don't let him get trapped into the mentality that he has to rely on assistance programs because he can't do things for himself.

I don't if this will help you feel any better - but one of the things I have noticed (my daughter is 13) is that she reeally didn't seem to progress a lot when she was younger.

I remember when she was diagnosed - I asked the doctor 'where do we go from here' and his reply was "Well, she will always have this. It isn't going to change." That really hit me hard - it was like he was telling me she was terminally incapable of ever being able to accomplish anything. Things were so slow - in so many areas she was like three years behind her peers and each year it was a big accomplishment if she moved a half a step ahead.

With a lot of persistace, support and determination - we set little goals and when she met them we were soooo happy. Each time we moved the bar a little farther and she continued to meet them. Then she just seemed to blossom at 11 years old. It was like the light finally came on and she started 'getting it'. She was always a 'pleaser' - she just loves positive re-enforcement. I can't say the growth she experienced was because of any particular thing - I think it was a combination. Maybe this is the case for others too. They just hit a certain point and they begin to 'catch up'.

Your son is still pretty young - and considering that boys (even 'normal' ones) mature slower than girls - it's entirely possible that you'll see some big changes in your son too. There are a couple of boys at my daughter's school who are just now hitting that point that Steph hit a few years ago.

I don't know where I get my confidence from but I am absolutely not worried about my sons future. He is an indepentent type, likes to do things his own way so i know life will be harder on him however his brain works well (at least at some things). I am concerned about the school since both of us are at odds with the school system and the typical teacher mentality. But I am ready for the battle.

My mum was worried about my future, just because I had the HFA label, and she convinced me to live with her, for as long as she could.

I see your avatar. I'm an ISTJ, just one letter away from you.

I also worry about what would happen if I was gone. I think that's the hardest. Not what will happen when she groes up...I think that part will work out. But madison's dad isn't part of her life anymore...and I think losing me would be hard...she doesn't want to live with her dad if that happens. And there aren't any ideal family situations. Though familuy on both sides would welcome her. So that is a worry.