Where do you see your ASD child in 15-20 years?

[Marne]

A few days ago someone asked me this question (where do you see dd2 in 20 years time?) The person that asked me this has no idea about ASD (just what he has seen and read up about in the past few days), he thinks Dd2 will have no life and that she is severely Autistic (he has obviously never met a severely autistic child), this person hinted that dd2 would be better off dead rather than living into adult hood (basicly this bloke is a knob). Any way, this is where i see dd2 in 20 years time (at the age of 24):

I think dd2 will always need some support, that could be from a friend, from me or a carer, she may have to live in sheltered housing. I think dd2 will be able to look after herself (cook, clean, wash, shop etc..), if she gets the right support through school i have no doubt that she will pass GCSE'S and possibly A levels, Dd2 may struggle to get a job and might spend most of her life out of work. I know life won't be easy for her (is it easy for anyone?) but i believe that dd2 will be happy and will always have family and friends around her.

Dd2 is only 4 (still a baby), she has already proved every one wrong, i have great faith in her and i hope she proves us all wrong in the future.

To have someone tell me that 'dd2 will have no life' really hurt me but it has made me more determined to prove people wrong. I have a strong feeling dd2 will prove us all wrong when she starts MS school in september (i feel she should go to sn school but lets see if she proves me wrong, lets give her a chance).

Who knows where our children will be in 20 years time?

we have a 18 year old ds but i would not expect him to care for him he has his own life to lead. My family have never shown any interest in ds2. I am just feeling down because in the last few days he has started showing a bit of violence towards us which he hasnt done for year and i thought it was over only squeezing and nipping etc nothing too serious but still..it hurts just looking out the window at all the kids playing in the street and feeling sorry for myself i apologize worse things going on for people tonight

Ah vintage, its Ok to cry.

Milady I can remember my mum saying to my sister & I... "your driving me mad, i'll end up in Warley at this rate" we are an E/london/Essex family too!
That SNAP centre looks great.

vintage this is the place to say what you need to say, please don't apologise. I haven't been here long either but I know that much about this board.

My family don't see any of the positives about ds and he is only three so I can understand a bit. It is very difficult.

If you would like to start a chatting thread I'd be pleased to learn more about your ds but if not, continue here - it doesn't matter at all honestly

That's a rather spectacular building, Milady. I'm sure DS1 would love to test the acoustics (think Sheldon Cooper in the cinema - DS1 does that!)

anon if you can get to it, Snap is amazing.

Total state of the art equipment, craft stuff and toys including HUNDREDS of trains, trips to Legoland, lovely helpful volunteers who KNOW what needs to be done almost before you do, security throughout the building so that you can actually chat to other parents without worrying, tea, chocolate biscuits

If you're anywhere near it give them a ring!

ROFL at Sheldon Cooper!

Where do I see DS2? Probably still living with me as I really can't see him coping with living anywhere else. And also I don't think I could sleep at night worrying about him.

Lou, three under 5 sounds hard. Hope your DDs EEG goes ok tomorrow for you.

Thanks Milady, I live in Suffolk now but it sounds like every town should have a Snap.

It really should anon. Sorry you can't use it

JollyPirate has a blog post about the origin of it but it isn't for me to link. Suffice to say it started in people's houses, then a village hall and then a lottery grant and a half million pound building! It's self-funding and sponsored by Rotary so Dave and his cronies can't touch it.

The lovely thing is that the original people are still there helping and being involved AND their now grown-up children are there too.

I was talking to a wonderful lady with Downs who was telling me all about herself and that she was independent the other week.

Today I saw my ds fast-forwarded to a young teenager in the form of a couple of truly sweet older lads and that made me very happy

Well, I just wanted to say thank you to you all. The crap day is over, DD1 is in bed, and I have a glorious 5.5 hours before I have to get her back up

I think for us all, maybe, there are nice thoughts, not so nice, and downright scary thoughts of our children when they are older.

lou I'm sorry I missed the middle of the thread initially but I did hope you would come back. You always speak sense. It's a very bitter-sweet thing.

Enjoy your hour 5 hours, I know what that's like

Oh boy. Enjoy your 5 remaining hours, lou :/

dd3 has woken up crying. She is now asleep on my lap. DH is driving his parents back to the house they are staying at about 20 miles away.

Oh, she'll be sleep deprived alright :/

[bacardi and cake]

I worked as a carer and still know lots of other Carers. When you're in a job for years and it's a good setting that encourages you to really care, you do love your clients. It's just politics that the word can't be used. 40 hours a week is much longer than most people spend with friends and relatives. You should see the tears when an elderly resident dies or the grief when they get poorly and need a more intensive placement.

Good luck for today Lou xxxxx

maria Thank you for your post!

in 15 yrs, my eldest will be just 26 and my youngest will be 24 (coming up to 25)

I expect that they'll still be living at home.

Most men in their early 20s seem to be.

in 20 years my eldest will be 31 (just) and my youngest will be 29 coming up to 30

I think that by then they will probably have their own homes. Either their own place with a support worker visiting, or they'll be in multi-occupation homes (registered residential with 24hr support)

Or they might still be at home.

Or maybe they'll be married. I really really REALLY hope they find love.

My neighbour (& cms' dh) is a carer for adults with LDs, we have a couple of residential units close to us. He was a nurse but left in utter despair about the system. He's so committed to his work & clients - not in that awful pat on the head 'there there dear' way that I've come across with ds but because he likes them & thinks they are interesting people.

In 15 years time ds will be 18 - I'm sure he'll be at home, being driven insane by dd2. Beyond that I don't know ... maybe studying OU or something. Working? Like every other male (& many of the women)in our family I can't imagine him in a general public facing roll but we're all self employed maybe he could find his niche that way. The older he gets & the better his language becomes the more insight we have into his other 'foibles', especially with motor planning. I'm desperate that he maintains his zest & friendliness we don't let the anxieties take over. I'd love him to have his on family one day if that's what he wants.

I feel exhausted by it all. We need to sort out our horrendous finances as a priority - not likely any time soon though. And sleep, I need sleep.

Thank you Marne

Silverfrog, all he ever says is 'eye contact, joint attention good'. He seems to overlook that they are only good if something is interesting to her. Otherwise it's like peeing in the wind.

In that case I'd definitely be going for a send opinion. Dd1 has perfectly.acceptable eye.contact.if you are talking through the week's menu, or joining in with a puzzle she wants to do, etc. Not so good if trying to get her to lay the table, or help with the laundry...

At age 5 I was only using pedantic repetitive speech. I had no clue I was a person. I would rock endlessly for hours. I ate stupid things and ended up at hospital a reasonable amount because of injury and disaster around my curiosities. I was totally transfixed by spinning or shining things.

I was, by current standards, pretty autistic.

I'm married (to an autistic man - lovely!) with a son (yup, ASC, also lovely these days though he was a huge huge challenge when younger) and a good job (which I do with support aplenty).

No-one could have predicted that.

Take no notice of idiots who say that all of our children will never be happy or have a life that they find to be wonderful. They are not psychic.

Will all things be fantastic? Nope. No-one's life is a proverbial bed of roses all the time. But neither is it a disaster.

When ds was diagnosed at 3 I was told it was unlikely he would ever be independent. He has in lots of ways proved his original dx wrong in so far as he has normal speech (when he chooses to speak) the challenging behaviour is gone (because I can handle him like a pro nowadays) and I always believed he would one day be independent.
But as he moved into his teens I am increasingly pessimistic about his chances of an independent future. He has very few life skills despite repeated teaching and modelling. He can pick up algebra but we still haven't mastered dressing without prompts and help.
So for ds I am pretty sure he will need supported living.
Dd was considered more severe BUT she has made astonishing progress as a result of early intervention. She already has more ability with dressing and other self care than ds so I am optimistic that she will gain independence. I can see her working and living independently with a menagerie of animals and it's a dream I hold onto.

lou my son is definitely asd [lots of other problems]but undiagnosed the reason the doctors wouldn't diagnose was eye contact and he interacts with carers, he attends a specialist school for autistics which his ed psychologist fought for, he also questioned the autism diagnosis every year at his review as did the school Dr and his teachers have said that in their opinion he has all the traits.
He is getting reassessed when he turns 16 and goes over to the adult team, and has no more contact with the child psychiatrist.
I would push for a firm diagnosis as if you don't have the right professionals backing you, you get no proper help.