Do you worry about the future?

[drowninginlaundry]

It's just that I have been thinking about this a lot to day after spending the morning with the tosser Ed Psych. We talked about possible future placements and developmental issues after I stupidly asked what he thought of DS1's progress or lack thereof. He pontificated how he has assessed and monitored over 500 autistic children over the past 15 years so apparently he was in a position to 'paint me a picture of the future' and apparently it 'helps if you are realistic with what you are dealing with' .

I am quite honestly shocked about his comments. He went on about sheltered accommodation and sheltered housing and how 'some' may be able to hold down a job such as stacking shelves in a supermarket because of their ability to 'show up on time' and 'perform matching tasks'. He said that in these sheltered communities, 'some' may form friendships, even relationships in which case 'you have to determine whether they should have children because it is an inherited condition'. And that we should then consider setting up a trust so as not to financially burden DS1's siblings. He then graciously thought of giving me a 'best case scenario' and went on to tell about a boy who is going to university, 'but this really depends on whether you get his education right from the outset'. Good, no pressure then.

I am upset by his speech, but I don't know what upsets me more - that a professional I am paying is such an obviously fascist wanker or that in 15 years' time this is the kind of life my son will have.

Leaving the issue re: fascist wanker, I am trying to figure out what I am feeling - sadness? Disappointment? Worry? He is only 4 1/2 but every time we see a professional, expectations are being scaled down. This time last year I was being told that 'in a years' time he will be having conversations with you'. He has very limited language (single words). In the tests today he was shown to have a severe language delay and he came out borderline low average/low ability in every test. Except one visual reasoning test (block puzzles), the only test where he understood what he was asked to do (no language element) and he scored higher than average for his age.

I am rambling, I know. But I worry what will happen to him when the education system kicks him out, who is going to look after him? What I have found so hard about this autism thing is the not knowing. Not knowing if he'll speak, not knowing how able he will be when he starts school, not knowing how he will cope with life. Because he is only 4 1/2. I just want him to have a good life. I don't know why I am feeling so sad.

[heartinthecountry]

Hi drowninginlaundry - I was having very similar thoughts this morning about my dd1. I think because she broke up from school today and I just started thinking - what happens when she breaks up from school and won't be going back?

To be honest, it worries the hell out of me. Realistically she isn't going to get a job - 'even' stacking shelves in a supermarket. I just don't know how she will fill her days. The thought of her going to some adult day centre, when she will only be a teenager fills me with horror. Yet I know I will not be able to care for her full-time.

She is only 5 now. I think about it from time to time and then I shove it to the back of my mind. But one day soon I am going to start looking into what options there might be, programmes that might be in place. But I have a horrible feeling there is probably very little out there. I figure that if I start early enough, then I might even be able to do something about that and start up my own scheme. I remember reading about a woman who set up a cafe that employed disabled young adults to give her own disabled daughter a future. I was pretty inspired by that. I don't expect the state to provide much at all.

Thoroughly depressing.

I also have to say though, what the hell was the Ed Psych doing telling you all that? It might be the reality. But its something you kind of what to face in your own time when you feel able to - not have someone shove it down your throat. You are right - wanker .

[jimjamshaslefttheyurt]

Now ds1 is 9 I'm fairly certain he will need 24 hour care for the rest of his life. It's actually easier knowing that than it was when he was 4 and we were still hoping for speech.

But that's why I'm teaching him to type. So he can tell social workers to bog off when I'm long gone

Trust fund is a good idea anyway - otherwise all the money ends up going to social services (we still need to sort ours).

[oldcrock]

I worry about this too, although it helps to get through it if you just take it one day at a time. I like to think there will be something out there when dd2 grows up and if there isn't I will face it when it happens.

What made me sad was once in the local leisure centre I saw an adult man with Down's Syndrome with his carer in the cafe. He was eating his lunch and the carer kept on nagging at him: " Come on Mr X, eat up!" and gradually got more and more annoyed with him for taking so long. It saddened me to imagine dd2 one day in the distant future when we are long gone being treated without any love or care on a daily basis

[jimjamshaslefttheyurt]

I felt a lot better about the future when I found out about Coombe House. I met the guy who runs it and it's just the sort of place I;d like ds1 to end up in (it's run by the Priory and is like adult school).

Getting it funded will be a battle (300 quid a day) but I want that or an equivalent and won't settle for anything less. DS1 will be hard to place so that in some ways goes in our favour- a lot of services won't be able to cope with him.

They start planning for transition when the kids are 14 at ds1's school (which goes up to 19 if needed).

[lourobert]

My son isnt yet 3 and I find myself worrying esp as ds has no siblings and dp and I have just split- who will look out for him when were gone?!

I have worked in adult day services for many years, Ive worked in adult respite unit and residential homes....sometimes too much knowledge can ge a terrible thing knowing what is,or rather isnt, out there.

I have worked in some fantastic places though and I too think about providing some sort of service in the future.

[ManxMum]

I have thought about the possibility of my son producing children (amongst many other things) and wondered if parents can insist on vasectomies/hysterectomies for the LO's?
Puberty worries me a lot as does abuse, because my son has already suffered mental/emotional/physical abuse at his previous school.

My DH and I have made a pact that if DS contracts a serious illness, ie meningitis, we will not try and save him, if he is to be further handicapped.

[drowninginlaundry]

That's just it oldcrock - here in his family, DS1 is loved as he is, his family and people who know him have the patience and ability to let him live in the way that best works for him. It upsets me to think that he may one day be treated as a nuisance. Like that awful thread the other day about the disabled woman in the restaurant. I don't want that to happen to DS1. DH says that he can live with us as long as possible, but that's not independence is it?

jimjams, what's Coombe House? Send me the link, I want to feel better about the future as well!

[jimjamshaslefttheyurt]

Have a look on the Priory website. There's not much info there but the person who runs it is great, and I now know someone whose child is there and he loves it.

It might not be appropriate for your son- it;s aimed at those who are severely affected but there are plans to open houses where people can be more independent but access the facilities at Coombe House (climbing wall, dance studio, farm etc). The guy running it said more and more provision like this will be opened in the near future as parents are demanding it.

[jimjamshaslefttheyurt]

The Priory are great btw because they pay their staff well and train them properly. I know someone who works for them as well and she is really positive about their adult provision (and she has a severely disabled sibling so she 'gets it')

Honestly, I feel so much more positive about ds1's future now he's 9 than I did when he was 5. Even though at 5 I still had hope that he would move into being high functioning.

[jimjamshaslefttheyurt]

Coombe House

[jimjamshaslefttheyurt]

i think something else that has helped has been seeing ds1 develop independence at school and enjoy going off to different provisions/his childminders etc. He doesn't particularly want to be at home now- he's always asking to stay at my Mum's for example and is out the door like a shot if he knows he's going somewhere else for the day.

I'm sure that when the time comes for him to move on from the family home it will feel right if you know what I mean.

My fear is not being able to access decent provision because the council won't pay for it.

I also remind myself that I don't know what the future holds and although I can't imagine x, y and z it doesn't mean it won't happen.

But if he stays as he is- he can still be happy.

[drowninginlaundry]

that's all we can ask really isn't it - that they have a good, happy life.

Thanks for the link, it's good to know that there are places out there available. I am slowly starting to come to terms with where DS is on the spectrum, and things that professionals have hinted in the past that I just didn't want to hear are now just, well, the way he actually is. We always had in our heads that he will somehow 'grow out of his autism'/overnight develop speech/turn out to be very high functioning but I don't think he is and it changes the focus of interventions as well in a way that is a lot more manageable to us as a family.

I am, however, very optimistic about DS1 starting school. And moving out of London will be good for him I think

[jimjamshaslefttheyurt]

TBH you really can't tell when they're little. Children who seemed behind ds1 at 2 have shot past and are now about as high functioning as you can get.

It's why the pre-school years are so hard. You really have no idea what you're dealing with.

[chonky]

What happens in the future with respect to dd's care is what I find hardest about dd's disability (she has PMLD and will always need 24 hour care). I sometimes wake in the night worrying about it .

I try to rationalise my fears by extrapolating how far we've come in the past 30 years (until 1972 there were no SN schools for example - FFS), and hoping that the care in the future will be better than it is today. I'm also resolute that we will start planning dd's care asap, and we're also talking about setting up a trust fund for dd.

Sorry you had to deal with such a complete and utter wanker DIL.

[TotalChaos]

yes. for the reasons jimjams has said - I have no idea whether DS will mostly overcome his language problems and be able to live and work independently or not.

[Sidge]

I try not to think too far ahead or I just get upset. I'm not naive, I know DD2 won't be able to live independently, and we have made our wills, appointed guardians and arranged a financial trust for her. But when I think of how things might be when I'm not there for her I get all panicky and tearful.

Mind you her condition is life limiting so who knows what will happen? I dread her dying before me, but then I dread her being alone after I am gone. Life can be so complicated

[Seuss]

A trust fund is a really good idea - thanks. I'm very worried that somewhere along the line ds2 will feel obliged to care for ds1 - my mum actually said the other day 'ds2 will look out for ds1' - I hope this won't be more than 'looking out for'. I want to know that financially we have done as much as we can to relieve any burden of responsiblity.

As they get older I think you do get a clearer idea of what they might be capable of. I have more hope for ds' future now than I did this time last year - even though his behaviour is more challenging at the moment I feel his communication is getting better.

I think it was a bit grim your Ed Psych saying all that - especially when it is so impossible to tell how things will pan out.

[sphil]

I have absolutely got my head in the sand about this. Hate hate hate thinking about it - especially because we are older parents . Feel so similar to you DIL - DS2 is so mildly autistic in some ways and so severe in others that it's really difficult to know how he'll develop.

[ShinyHappyPeopleHoldingHands]

Oh God I have all this somewhere in my head. DS2 not autistic.. well we don't think.. who knows.. he certainly has traits of it.. but he will always need 24 care I expect.

Mostly these big worries lurk in the back of my mind because I have so many current ones. But they're always there eating away at me.

DS2 left mainstream school today. He's going into special education in Sept into Y4. He brought home a folder the staff have been making for him at his old school. Looking at it makes me cry. God know if I (we) have made the right decision but what else could be do? It just wasn't inclusive for him anymore and they were struggling; he was having to be taken out of the classroom for everything. You can actually tell that from the photos in the folder alone, if I hadn't already known. But he is kissing and hugging the staff and looking at them with such love; there is a section for each staff member who has worked with him with all their little "in jokes" that DS has invented for each of them. Who was I to rip him out of that environment where they all loved him so much even if they struggled at times? Apparently none of them to could bear to put him on the bus this it in the end.

I know I've gone off on a tangent but this was the future.. this "leaving mainstream" and now it's here.. I don't feel qualified to make all these decisions about DS. Who am I to have such influence on his life and the people, outside home, who he gets to love and interact with?

And there's that scary After Education thought... but am allowing myself a small at the thought of DS shelf stacking.. he'd eat all the contents! DS knows not what a full stomach feels like.. he's just carry on.. and on.. there'd be nowt to stack! He'd be fired after his first shift!

[Seuss]

aw shiny your ds had to say goodbye but if it wasn't inclusive anymore it probably is for the best. It's hard to have to make all these decisions isn't it - I mean it's hard enough when you become a parent anyway and have to decide what to feed them, how to clothe them etc. But to then have all these extra worries.

I was thinking earlier there is a farm project by us that employes ASD teenagers - ds would be joy-riding on the tractors. Shelf stacking - I can't imagine him getting to a stage where he doesn't see the aisles and want to run madly! He asked for disco boots earlier - I have a scary feeling he means roller-boots. Hoping he goes off the idea before some well-meaning rele gets them for his birthday.

[drowninginlaundry]

shiny your post made me cry. I felt the same just last week when I took DS1 out of his nursery that was by all accounts failing him.

I used to view the possibility of DS1 not being able to access mainstream education with utmost dread and the idea of him going to a special school was tantamount to failure . It's the same reason why I got so upset when the tosser Ed Psych laid it out for me - best case scenario: a job and a vaguely independent life - worst case scenario: no independence and life in a supported community with lots of care. That's just my ego weeping, isn't it, and letting go of my idea of a future for him. Also, although I think ABA has done a lot of good things for DS1, I did feel 18 months ago when we started the full time programme that I was entering a some kind of cult; everyone was talking about 'recovery' and making him 'normal' and mainstream education and I thought that that's what I had to do as a parent, make him 'not autistic'.

If DS1 one day has a job that he loves, I'd be ecstatic. In one of the books I read (Home Educating Our Autistic Specrum Children) one of the boys got a job in a zoo picking litter with those litter-picker-thingies and I thought 'DS1 would LOVE that!' It's hard to think of him living on his own, it's hard to think of him as a grown up man.

What mostly worries me is money and who is going to provide for his care. We have to get organised. Judging what wankers Education Authorities have been I am not holding much hope that Social Services are going to be any more generous.

Seuss disco boots would come in handy in many jobs, rollerskating is a good skill to have!

[eidsvold]

oh yes - I worry about short term future and long term future. Prior to dd1 starting mainstream prep - I was thinking ahead 8 years to high school. I wonder how her life will pan out. I wish the same for her as her other sisters - they are loved ( by someone other than us), they are happy and fulfilled - in whatever way that is. They feel good about themselves and know they are wonderful girls/women.

We are fast coming to the end of dd1's time at the special ed unit. She is going 4 days to mainstream next week and full time mainstream is could be as little as a few weeks away - perhaps in October! It makes me so sad to think about her leaving the fabulous staff - some of whom she has known for over 4 years. Then I wonder if we are doing the right thing sending her to mainstream when she will probably end up back at the special school when it comes time for high school.

Will she be okay when we are not here to keep an eye on her ( but hey I think that about the other two as well)?