uncertain future on the spectrum

Discussion in 'General Parenting' started by Mrs Smith, Jul 19, 2007.

  1. Mrs Smith

    Mrs Smith New Member

    When I think about the future for my son, my mind goes blank. On one hand, I guess it's good not to assume any limitations, but on the other hand, I don't like the feeling of uncertainty. And each year that goes by, I seem to get more anxious as progress is painfully slow. I think I've researched too much. Does anyone see independence in their kids' future?
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    I can't speak for all kids on the spectrum. My son is 14 and he'll need some help as an adult, which I don't see a BAD thing. He is what he is, and he is a very different kind of person. He won't need total care--can maybe even live in his own apartment--but somebody will have to look in on him and help him manage money, etc. He'll likely need special placement for jobs. I'm fortunate that my oldest son is very bonded to him and will always look out for him, and he has other siblings. I don't feel I'm limiting my son, just being realistic. We are striving to make him as independent as possible, (he is getting a driver's license) however we don't want to make his life hell on earth for him by demanding total independence if it's too hard for him. He will always need some sort of help.
  3. nvts

    nvts Active Member

    Hi! The answer to your question as to whether I see a future for my boys is a resounding "yes".

    We started the neuropsyches on both boys yesterday and the dr suggested that I get some parenting classes geared specifically for parents of kids with Aspergers as well as Grey's book called "Social Stories". She also recommended a book listed on the O.A.S.I.S. website about Aspie kids being bullied.

    Sometimes too much research can be a dangerous thing. My sisters are constantly calling with their $2.00 psychology degrees with their latest diagnosis for the boys!!

    Good thing I didn't lend them the 2 bucks!

    Don't lose heart and sort through the research with 1/2 an eye!

  4. Mrs Smith

    Mrs Smith New Member

    MWM, I don't see complete independence either but I would feel alot better if there were siblings to count on.

    Has your school district started any planning for the future yet?
  5. JJJ

    JJJ Active Member

    in real life I know numerous people with high functioning spectrum disorders and/or Tourette's that have college degrees. They may have needed support from the special needs dept at the college but they graduated, hold down jobs and have friends. I'm not saying it was easy or that they don't need help at times, but they have a good life as a functioning adult. Keep hoping!
  6. Mrs Smith

    Mrs Smith New Member

    nvts and JJJ - thanks for sending hope my way. I hope we all have happy endings!
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Josie, starting next year they start planning for his adulthood, and I'm really excited. See, I don't see semi-dependence as failure or a BAD thing. My son is a happy kid with a good nature, and he'll be content with any job he's placed in or any living situation as long as he's secure and has a measure of security. I can already see that the worst thing I can do for my son is to take MY values of what I'd want for my "typical" kids and place them on his head. Hub and I will be weighing options the next few years and watching his growth. As of right now he doesn't seek the freedom other fourteen year olds want. I do not see his life as wasted or a failure if he is a happy human being who is dependent on others when he is an adult. I am just happy that he has outgrown his negative behaviors. Also, I can't expect my grown son to take in Lucas. If he does, he does, but right now he's expecting his first child. All I want is for my older son to make sure Lucas lives in a good place, be it a group home or semi-indie apartment and that he visits him and takes him during holidays. I want Lucas to reside near him. As an older parent, I have to think about it.
  8. sameold sameold

    sameold sameold New Member

    My AS son has alot of major mental illnesses thrown in with the mix. Unfortunately he will never be independent, at least not that I can see. Our goal is to keep him content. I don't use the word happy because I don't know if that is feasible one. I don't mean to sound defeated but I sure think mental illness won on this one. But, your son is only 14 and they are all so different and things could really change for him, with MWM son's being happy and a having a good nature the possibilities are endless. Just try to keep your son involved with others if possible. Good luck to you. Without the major depression, agoraphobia and possible schizophrenia maybe my son would have had a chance at living independently.
  9. Marguerite

    Marguerite Active Member

    Independence is our ultimate goal, for ALL our kids. And they seem to be pushing themselves towards it also.

    I look around and feel hopeful. For some time I was afraid for difficult child 1 as he didn't seem to ever be mature enough for a stable relationship. His first girlfriend was wonderful, they were an item for two and a half years, but she matured and he didn't so she moved on. He was devastated and took another two years before we felt safe to ease back on suicide watch.
    Then GF2 - a bright, bubbly uni student who went out with him for one summer, then moved on. Again he was upset, but not so badly this time.

    Now he has current girlfriend. She also has some issues but they complement each other. She understands him and his needs but he also supports hr with her emotional and physical problems. he has learnt patience and even more compassion.

    His life skills still need work but he is serious about this girl, and if he is to make a life with her, he needs to be independent. He is trying to fast-track independence and I have to keep hauling him back a bit in some areas, and pushing him in others. Socially, I would put him at about the level of a 15 year old.

    easy child 2/difficult child 2 still lives at home but sleeps in her BF2's space, with him. She's an adult - it's her choice. She says they want to move away from us and get an apartment of their own - THAT will make her grow up fast. If their relationship survives that, then I will have some hope for her. She still needs a lot of support in employment and organising herself.

    difficult child 3 - will also need a lot of support for some time, but is also making progress. He's better in some ways with organisation. But it's early days for him, he's only 13. Socially - he's about 8 maybe.

    I have easy child to fall back on, but I'd rather not count on her to step in if husband & I get hit by a bus. I want to see these kids through to independence. As they reach adulthood they are developing friends and connections that will stay with them for years to come. We don't just rely on family - we reach out to others as we slowly improve our skills and understanding.

    We have a neighbour who, in centuries gone by, would be considered the village idiot. He is actually quite smart but he IS odd. His father used to do a lot of good things for people in the village, but his father died some years ago now. The son, now in his sixties physically, lives alone. People from church and others in the community check up on him; the pharmacist helps him with his medication, others help him with meals. His father taught him a lot about looking after himself especially when he knew he was dying. Although he has a sister, she never visits. He visits her occasionally, but still prefers to live alone.
    He did have a live-in carer for a while, who tried to take advantage of him and get him to sign over the deeds to the house. But as I said, he's not stupid - he went to the church elders and told them. They got the 'carer' arrested.

    We often see him walking past the house. If he's shaking his head and making strange noises we know to leave him alone, he's simply not able to be talked to. At other times we chat. He has people around who encourage him to drop in for coffee and a chat. He dresses rather oddly but it's his choice. Even in this cold weather, he wears shorts and sandals. Usually bright red shorts with a hot pink shirt - his current favourite "clothes for best".

    Whatever he ends up dying of, it won't be unhappiness or neglect. He has his hobbies, his skills and his interests. Nobody pushes him around, but he is a gentle soul. A lovely man. I don't know his diagnosis apart from epilepsy, I strongly suspect Asperger's, especially with what I know of his family history and my own experience with him. And it's fairly severe. I suspect his parents were told he was "retarded" and raised him as such, but I think he is a genius, in his own way.

    Always remember what John Lennon wrote in his song "Beautiful Boy" - "Life is what happens when you're busy making other plans."

  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Marg, I think it's different in Austrailia. I could be wrong, but don't people automatically get supports if they need them? Also, in the US many, many "odd" people walk around in cities homeless and become victims. I'm not sure if it's like that in Australia, but it sure is here. Thus, at least for my son (he is not mentally ill, but has some cognitive troubles and real social deficits) it's best to plan, and he will be better off with someone looking in on him. I don't feel he'll need to be herded like a sheep, but he'll not only be better off, but more secure with supports. He needs somebody to direct him on what to do. I hope he can learn to drive. If not, he'll need help getting places. As for how he manages money--he lives in the present. He has always been that way. Ive never been able to teach him the concept of saving. My goal for Lucas is to make him happy, safe and productive, however that has to be. I think sometimes "independence" isn't always something our difficult child's really want. That may be what YOUR kids want--I'm sure you know your kids well--but I'm pretty certain that my son will be a nervous wreck if he is left completely on his own. Yet he doesn't need group home type care either. So in the US, we start planning the future for our kids at around fourteen in most states. Would be interested to know (just out of curiousity) how other countries handle adults with special needs :smile:
    Sameold, I feel for you. But, trust me, my son doesn't have endless possibilities. Although he has a normal IQ, he is way behind his peers academically and will likely work a repetitious job that Social Services finds for him. We have a good workshop out here. I wish he had endless possibilities, but he doesn't, and he doesn't care...lol. Therefore, he's always going to be a little childlike, I think (at least that's how it looks now) and he will appreciate having his life directed for him. He can only live a full life if somebody structures it for him. It would be chaos if he tried to do it alone. In fact, if left alone, I think he'd do nothing except play videogames and watch television, collect disability, and maybe become a total hermit. He would never be able to handle money enough to pay rent. I shudder thinking about him out there on his own--he'd become homeless and, he's so naive, victimized. Unless he does a 180 degree turn, and I doubt it, he's not going to be a good candidate to live completely on his own, nor would he want to.
  11. Marguerite

    Marguerite Active Member

    MWM, you said, "I think it's different in Austrailia. I could be wrong, but don't people automatically get supports if they need them?"

    We don't get support automatically. What support there is, you have to apply for. And it's so fragmented, one mob never talking to any of the others, that problems (and some people) get missed. A lot of it is so tricky to apply for, if you are lacking life skills you're already at a major disadvantage.
    The neighbour I mentioned - the only formal support he gets is a disability pension and maybe Meals-On-Wheels. He had the disability pension before his father died.

    We do have a lot of homeless people on the streets - it was on the news tonight, because our weather is so cold at the moment that some of these people are dying. We have charities which drive round collecting people who are willing to go to a shelter overnight, plus there are other shelters which open their doors every night. Our mental institutions are virtually nonexistent, the people who used to live in this sort of accommodation are now on the streets. We have very little supported accommodation, you need to see a social worker to organise it and this sometimes happens if someone ends up in hospital, and the hospital organises something once they realise that the person's lifestyle is putting their health in further jeopardy. But nothing can be done without the consent of the patient.

    A friend of ours at church used to work in the city as a church social worker, helping the homeless. Now he's retired the church has let the position go and is closing the doors - the homeless are not photogenic enough, they are bringing their image 'upmarket'.
    When I worked in the inner city I often saw homeless people still getting their things together in the morning. I had a bad fall on the steps where I worked as I arrived one morning, a few homeless people passing by rushed over to help me. But it's not all good - another time I got back to my car to find it had been broken into. Nothing missing but they'd clearly been after spare change because a plastic wallet we keep in the glove compartment, with phone numbers in it and other papers, was lying open on the floor of the car (papers intact).
    When I used to drive to work early, I would recognise "the regulars". And apparently it's a lot worse. On the news tonight they said the average age of Sydney's homeless is now down to mid-30s.

    As for being lousy at managing money - difficult child 1 was shocking too, when he was 15. That's when his pension came in (we had to apply for it when he turned 15) and I had to go with him to the bank to lock away most of his pension. It took us a while to fine-tune how his account worked and each fortnight, the day before his pension was due into his account, he had to give me his card for four days, until the automatic transfer from his access account to the trust account, had taken place. The trust account is STILL set up so he can't touch the money without my signature as well. After 8 years of this compulsory saving, he now has about $10,000.
    I also made him pay board and as he got older and wanted things like a mobile phone, he's also had to pay for his pre-paid phone. He's moved onto a monthly payment plan now ($20 a month plus excess calls) and so far is managing it. He never could have, back when he was 15.
    When he turned 21 he had to get his own private health insurance. In Australia everyone is covered for basic medical care, but with his ongoing costs for medication, need to sometimes see a psychologist, dentist, etc we felt the added private cover would be useful. Each individual, or family, signs up for their choice of cover (whatever they can afford or are prepared to pay). We then have a lot more freedom in terms of available services. But we don't have to rely on employer-based health care.

    For difficult child 1, the health fund deductions are paid fortnightly by his bank, deductions coming out within a few days of his pension payment. He's got into the habit now, of not touching his bank account until the Monday after his pension payment. This means that whatever is still available in his working account, is his. But he has to make it last for the next fortnight.

    It's getting into the habits that helps. We never thought he would. We never expected him to ever be able to drive a car. Now he's 23 and suddenly decided it was time. He still hasn't got a job, and the various agencies which are supposed to work with disabled people to get them into the workforce - they're really useless.
    The kids have access to counselling support at college. But the kid has to have the confidence to pick up the phone and make an appointment with the counsellor. I'm still doing this sort of thing for them, as well as reminding them of appointments. I'm trying to teach better organisation to them, especially difficult child 1. His last appointment he put the reminder in his phone, but then left it on the charger at the other end of the house.
    When he's off to an appointment, he now always gets there on time. He doesn't always remember everything he was supposed to bring, but he's getting better.

    As I said, repeated drill and no yelling at him because he seems so thick - is what helps. Sometimes I feel he's a ten-year-old kid with a good brain, trying to live in an adult world.

    He IS getting there, but it's taking a lot longer than I ever thought possible. Still, he's doing more than I ever thought possible.

    Australia is a place where a drifter kid can survive if they have to. There are warmer places up north, also hippie communes where he would find his niche. I'm not telling him about them, though. I want him to do his best to fit in as conventionally as possible. However, we had a man drift through the village about 8 years ago, who lived rough by choice. A gypsy, of sorts. He had developed his own way of life and his own philosophy by which he was surviving and thriving. He slept under the stars, or under a building if it was raining, and picked wild food from the forests or from the side of the road. He would clean up rubbish from the beach, just because it needed to be done. Sometimes someone would give him food; sometimes he would find an abandoned fruit tree and collect the fruit. That is one thing about Australia - you can do that, if it suits you. But most people like this drift to Nimbin, Australia's permanent Woodstock. We call them ferals. Not so much street people, as forest people. They look as if you went into the forest, shook the trees and this is what fell down.

    I think as parents, we need to get our kids into ingrained behaviour patterns (like me teaching difficult child 1 to leave his bank account alone until the following Monday). It means rote drilling, gentle support and repeated, over and over, drill of what to do if. And then if we're not going to be available to help them deal with various basic stuff (like filling in a tax return form) we need to give them the information and the tools to get it done. Tonight husband was explaining to BF2, how to fill in his tax return. Another difficult child needing a parent's help.
    We explain, we teach, then we do it all again. And again. We talk them through doing things for themselves and constantly supervise, and watch, and gently relax our hold on the leash.
    If we do it right, they won't end up as ferals.

  12. wakeupcall

    wakeupcall Well-Known Member

    This is a really good thread and I like reading the responses.

    I, too, worry about difficult child though he's only 11. Academically he's doing quite well....all As and Bs, but emotionally he's waaay behind. Right now I'm not sure how much of it is normal behind-the-girls type of maturing, or does he just not get it and is never going to get it? He has trouble realizing A + B = C. I think the theory of being behind 2 1/2 years emotionally is right on target. That matters right now, but it won't matter when he's 25, as long as he keeps it at 2 1/2 years. difficult child will start intermediate school in the fall (6th), but I can hardly wait till next year when "woodworking" is in the cirriculum. I think he'll love it (he's talented with his hands) and maybe start pushing him in a direction.

    Since we are older partents, I SO want him to be able to care for himself rather than to think our daughter would have to help. She has her own four and doesn't need difficult child, but she would handle it if it was necessary, of course.

    I suppose we'll just try to plug along and work hard at him learning life.
  13. Mrs Smith

    Mrs Smith New Member

    MWM - your kid sounds alot like mine in his strengths and weaknesses. M has anger issues though and I fear the thought of jail as much as homelessness and victimization. I personally don't think there's anything wrong with being semi-independent either if he'll be happy and well taken care of. That's what I worry about though, when I'm gone will he have the supports he needs and if he doesn't, will he know how to get them? Real help is not a phone call away. The procedures are endless. There's so many complex loopholes, it's virtually impossible to get through the red tape even for the average person. It requires the cognitive skills my son just doesn't have and might never have. I think this is at the forefront of every parent's mind who has an autistic child. Hopefully all the avocacy groups out there now will help further the funded resources for our kids.

    Marg - you're doing a great job with your bunch. Maybe I'll send mine your way and they can all help each other.

    Thanks to everyone who responded.

    Has anyone gotten government benefits for their kid yet? If they are in the system now, will it continue throughout their lifetime? Anyone know the laws?
  14. I am so happy to see this thread. Frankly, it's really my main thought and concern these days - besides trying to help my difficult child make it through high school successfully. husband, who has more than a touch of GFGness himself (but really don't we all?) keeps saying that he thinks it's all going to come together. He really identifies with our difficult child and his issues - for example he didn't care about high school either - he also saw the teachers as his peers - and wasn't motivated to please them. He points out that he (husband) went through rough patches but that he made it and is doing quite well now, thank you very much...
    I am not so optimistic. While I can understand that husband identifies with difficult child - I know that they are different people with different issues. We've pretty much given up on ever coming to the "top" of the waiting list at the local University Autism Center for an evaluation for difficult child - so we've finally located a private psychologist who only works with folks with Autism and we're going for our evalution in a couple of weeks.
    I know that an official diagnosis can open some doors for adult services that I believe difficult child is going to need. I had a long, frank conversation with my easy child a few weeks ago about this. He has been really, really resistent to the idea that difficult child could be on the spectrum - but he came around after reading a recent bestseller by a fellow with high functioning autism. He could not believe how much the fellow was like difficult child. We had the conversation that we really needed to have - simply that husband and I don't expect him to take care of difficult child, not ever. If he wants to help out in some way - that's wonderful, but we are going to plan for difficult child's care. I guess some of it is a little bit of a waiting game. We love, support, teach, and model - and pray for some delayed maturation to kick in. It's hard to know the correct balance between loving care and an appropriate push towards independence - and it's made much harder by our difficult child's physical disability. We're taking it step by step and learning as we go, but we're definitely expecting to be in it for the long run.This is a very difficult concept for husband, he didn't want to be caring for children in his twilight years (nor did I), but I think he's coming around.
  15. --Eleanor--

    --Eleanor-- New Member

    Although my difficult child on the autism spectrum is only 7, I admit that I sometimes wake up at night worrying about what will become of him when he is an adult, particularly since my husband and I are older parents, we won't be there for him forever.

    But I am confident of his intelligence, and I am also somewhat reassured, from visiting the online communities of adults with ASDs, that a huge number of people with Asperger's, as well as quite a few with autism (including those who have been labelled "low functioning") can lead productive and independent lives. Consider Amanda Baggs (recently profiled on CNN--website at ballastexistenz) who has pretty much every symptom of autism, and is virtually non-verbal. She is an outstanding writer and disability advocate, who lives on her own, albeit with assistance.

    And although the great increase in the numbers of kids being diagnosed with ASDs is pretty worrisome, I think it may mean that by the time my difficult child is an adult, there will be greater understanding of him, and more services.