Page 3 | To ask about life with a learning disabled teen/adult?

PrettyPolli · 2026-08-20T10:59:32+00:00

My son has a rare condition. He’s 4.5 but like an 18-month-old in terms of milestones, except communication, where he is younger. He babbles and screams all the time and can wave, point, clap, and understand and respond to basic instructions (e.g. “bring your shoes”). He’s affectionate, curious, joyful and adores people and animals. Everyone who meets him comments on what a ray of sunshine he is. He smiles nonstop and wants to meet everyone. He also hits, bites and melts down a lot and is completely without fear of danger. He will run in front of a car given the chance. It’s impossible to discipline him. I am starting to really worry about what life will be like with him in the future. If you have any experience of a child like my son, what happened when they grew up? Will I need to give up my job to be at home with him once he finishes school? Surely he will never be able to be left alone. Will I ever get any time to myself again? Will he become more aggressive when he hits puberty? What is the hard truth? And what are the good bits? Are there any? There are actually so many good bits right now and I feel so lucky to have my gorgeous son, despite how hard things are sometimes. I’m just so worried it will get even harder and harder from here on out. Thanks for reading.

sunshine244 · 20/08/2026 21:47

I agree with the suggestions to try and get to know other families with children locally with additional needs. My two don't have learning disabilities but autism, ADHD, Tourette's, anxiety...

I've got to know lots of lovely parents locally through carer groups. To an extent the circumstances have been more important than the diagnoses. Whether the issue has been sleep or eating or school etc there's always someone who has been through similar.

Enquire are great for ASN and school info https://enquire.org.uk/ The presumption of mainstream in scotland can be problematic but it can be challenged. Having learning disabilities makes it muhc more likely to get a specialised placement than other issues.

If you were willing to share which region you are in someone mihht be able to share group suggestions. In my area, gor example, there are parent carer groups, some local informal parents groups, and ASN play charity, and lots of groups like RDA, disability sports etc.

Enquire - The Scottish advice service for additional support for learning

If you feel a child or young person needs extra help to get the most from their learning and are unsure what to do, we can help you.

https://enquire.org.uk

DistractMe · Yesterday 06:18

Agree with everything said so far about connecting with other families. Our home lives can be so far beyond the normal and it makes such a difference to be able to share with people going through something similar.

But it doesn't have to be local. In the very early days I found a group of people online who became my absolute life support system for a few years. We grumbled, we laughed, we boasted when our children achieved something that wouldn't register in the household of a normally developing child, we held each other up when we were desperate, we empowered each other to get the best out of the system, we occasionally met up and got pissed together.

The group I was part of fizzled out as kids grew up, but you may find something on Facebook. And mumsnet itself has a special needs board.

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PrettyPolli · Yesterday 09:25

TwoBlueFish · 20/08/2026 13:16

I Have a 23 year old son who has Down syndrome. He has a great life, lots of friends (mostly also with DS), he works 1 day at a week and goes to a day service 3 days a week doing activities that he enjoys. He’s had a girlfriend previously and would like another one one day. He has a better social life than me and is starting to talk about supported living.

For me, I absolutely adore my son but yes it’s impacted my life. There’s a lot of admin, chasing social workers, finding PA’s, organising social activities, being a taxi driver, etc. it’s also been tough seeing friends with typical kids now having freedom to do what they want to do without worrying about their kids. I’d love to go on a 2 week holiday with just DH but that’s impossible at the moment.

I’m immensely proud of him and wouldn’t be without him.

Thank you for sharing. I’m so happy your son has such a great life. It sounds like the future I’d hope for in a best-case scenario. Which is not to ignore the great difficulties you mention. I know well how absolutely everything is (at best) a little bit harder than with a typical child, and (at worst) a hell of a lot harder. It all builds up. Solidarity.

What you say about other parents getting more freedom as their children grow, while you stay restricted, resonates with me - this is something I’m very conscious of for my own future. I do really hope you get that freedom too one day, maybe when your son moves out.

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PrettyPolli · Yesterday 09:30

JadeSeahorse · 20/08/2026 13:20

We are much further down the line as our DD - only child - is now 32.

(Apologies for the very long post in advance.)

She was born with an extremely rare gene mutation which causes horrendous cluster seizures, severe autism and very challenging behaviour along with severe learning disabilities.
Our DD looks perfectly normal until you try to speak to her as she only has the speech of a toddler - odd words - and overall is like a 2-3 year old.

We managed to get our DD into a special needs nursery at 3 years old followed by 3 years as a day pupil at an excellent school for medium - severe autistic spectrum disorders - all transport was covered to both which were around 30 miles from home - but once she was almost 8 years old the school admitted they could no longer cope with her and she really needed 52 week residential school. ( At this time she was very destructive and quite violent with super human strength although she was only a tiny tot plus she suffered horrendous seizures for days every few weeks.)

Again we were successful in obtaining an excellent residential school placement for her which was 2 hours from home and we used to drive over to visit every weekend. (This placement was a blessing in disguise although didn't initially feel like it of course.). She stayed here until she was 16 and then transferred to another, much smaller residential school for 16 plus which was slightly closer to home and she was here until 19 years old.

Over the years, I'll be honest, we had made some very good contacts who were very senior in Social Services locally, one who tipped us off about a brand new centre which was opening, 20 minutes from us, for supported living. We were so, so fortunate that DD was accepted and transferred over a few weeks after her 19th birthday and has lived very happily there ever since. She has a beautiful, one bedroomed apartment with it's own large courtyard with fantastic 24 hour care. The management and staff are some of our best friends now and DD has a great life. We see her 4/5 times per week and she comes home for a short visit with 2 care staff every few weeks but always wants to return after a couple of hours.

However, I won't lie, it is still very hard and there is very little reward. Her seizures have - touch wood - been totally controlled for almost 3 years now but she still is very challenging and often slaps people for no obvious reason. She is very, very obsessive and extremely demanding of us.
Nevertheless, we wouldn't be without her for the world.

Whilst she was still living with us my husband gave up his full time post to care for her as I was the main earner at that time and he was still able to teach one day per week. Then it became too much for him alone so I took had to give up my career and started a small business from home which eventually became very successful. DH was then able to return to work full time so we were very fortunate work wise that we were able to keep our heads above water. It certainly hasn't been plain sailing. You also find that you gradually lose friends but that didn't bother us as we've always preferred to be by ourselves.

This has been our life for 32 years. I know things have changed a great deal over the years and there seems to be even more jumping through hoops these days to obtain the help your child needs. My advice would certainly be to do all you can to obtain a special needs school placement., either as a day pupil or residential, and definitely plan for your ds to enter supported living as an adult. You do need to do all the investigations yourself and be very aware that social services will always want to place him where it is cheapest so you do need to fight which is exhausting but so worth it.

Wishing you the very best of luck! 💐💐💐

Thanks so much for sharing this story from much further down the line. No need to apologise for the length - it’s all really useful to see. It sounds like having the right contacts and knowing the processes made all the difference for your daughter. I definitely need to work on that as right now I’m totally in the dark. I’m sorry to hear she’s still so challenging.

The seizures must have been terrifying. Fingers crossed they remain under control. My son’s condition includes seizures in 80%+ of cases too, but we have been lucky so far that he hasn’t had one yet. We are just hoping against hope that he’s in the other 20%.

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PrettyPolli · Yesterday 09:38

Sahara123 · 20/08/2026 13:35

My daughter is 37, living at home with us. I gave up work in the end, council provision was just not very good.I arrange her care using something called self directed support ( I’m also in Scotland). We are very fortunate indeed that we found a wonderful family with a private care company, for both social care and respite. We’ve finally started being able to have some respite, for the last two years. Council provision was a respite flat up two flights of stairs. She is physically disabled also 🙄. There’s not enough money for much but it’s something.
I worked in school but retired early as it all became too much. Previously we managed by my husband working from home with a very understanding company who gave him the flexibility to work around her appointments etc. I’ve become quite isolated, I find it hard to maintain relationships. Everyone else seems to be going in the opposite direction to me, eg planning what they’ll do in retirement, for me, it’s being a carer.
I know many other parents in the same boat, but they’re all as worn out as me, and I’ve never been keen on support groups anyway.
I’m exhausted, and worry about the future . I can’t bear the thought of her living in some grotty council home but neither do I want her siblings to carry this burden.
Sorry to be so negative. My mental health is poor. I do have many good things in my life but this is hard. And not fair.

Thanks for your honesty. I do want the real picture. ayour exhaustion and frustration are in every word of your post and I don’t blame you a bit. I totally relate to what you say about you having good things in your life but this one deeply unfair thing defining everything.

I do wonder if there is a huge gap in service provision between Scotland and England. As far as I can tell there is pretty minimal support here except for, as you say, grotty care homes - which is so far from what I want for him. anime of us want that for our children. I expect that supported living places, if they exist, may be like special school places - absolute gold dust.

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StressedOutPeanut · Yesterday 09:40

Way to early to tell.

I was told my eldest would be in nappies and have severe learning disabilities all his life and would never talk. They were wrong.
He has a moderate learning disability, came out of nappies when he was six, selective mute but he can talk for England when he feels like it, he attends a sen school and doing two GCSEs maths & science and on track to pass. So take everything with a pinch of salt.

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PrettyPolli · Yesterday 09:42

Cleya · 20/08/2026 19:16

My autistic son is 27. He would not have been described as learning disabled, yet he has never had issues claiming DLA or PIP at the highest rates, and he had an EHCP and attended an independent special school funded by the LA. He didn't pass GCSEs but he can read, write, understand information and instructions. He used to have challenging behaviour at school age but these days he's quite mellow and we get along fine.

He lives at home and claims PIP and UC with LCWRA (never had problems claiming it). He couldn't live alone or with flatmates but he is quite independent and is able to shop for groceries and cook meals for himself. I go out during the day and I leave him alone in the house for up to 2 weeks at a time when I go on holiday. I organise things like his medical appointments, bank account, benefits, take him to appointments, he deals with his own personal care.

We were offered help with social care and he could probably qualify for an supported living flat. But I've been unimpressed with feedback I've had from other parents, and I think he has a better quality of life with us, and we are happy to go out with him for social trips eg to the cinema or for a meal. He is quite content with his computer game hobbies and I am supporting him with some online learning. His social life is all online but that is not that different to other young people these days.

Thanks for sharing. Can I ask what you didn’t like about the supported living?

Its also interesting to me that he can be left alone for two weeks but couldn’t live alone - is that because he couldn’t manage all the admin and organisation that you’re currently doing for him, though he can manage his day-to-day basic needs?

Love to you both.

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PrettyPolli · Yesterday 09:54

whoateallthecookies · 20/08/2026 19:16

I have a cousin with a rare genetic condition - he can speak well, but can't read or write,and went to special schools right through. He isn't violent, and can spend time in public on his own. He moved into supported living at 32; it was very much a planned move with two friends who were at school with him (and also needs support). I think he gets 15 hours support a week, so not full time care. He volunteers 3 days a week, but doesn't have paid employment. My aunt and uncle felt that this was the best thing for all of them; a planned move into a good setting. He can't cook for himself, but he can heat up a ready meal, to give you an idea of capability.

If provision is better in England (where we are), would you consider moving?

Thanks, interesting to read. Based on others I’ve seen online with his condition I expect my son will need more care than your cousin, but as others have said, who knows for sure at this stage.

I wouldn’t want to move right now as my mum and my friends are here and i’m here’s a lot of mutual support there. But mum is quite old now, and I expect my friends may be able to support less and less (and me to have capacity to support them less and less) as my son gets older. So I wouldn’t rule out a move in the future.

My children and I are actually dual citizens with an EU country often considered to have excellent healthcare provision, so I expect social care might be better there too. lf there is truly no provision in Scotland by the time we really need it then I suppose a move there is an option, though it would be difficult given my partner is not a citizen, language barrier etc.

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PrettyPolli · Yesterday 09:58

Yellowcucumber · 20/08/2026 19:18

I have two DDs (16 and 13) both have asd and adhd. The youngest is much more profoundly autistic, non-verbal, a learning disability, epilepsy and a lot of challenging behaviour.

Our 16 year old has made great progress. Was in a specialist school from 11, fully verbal, mainly happy (as happy as your typical 16 year old).

Our 13 year old, life is very hard. She’s very aggressive, doesn’t want to leave the house, attacks me and siblings on a daily basis. I’d say her temperament is quite volatile.

We’ve got a social worker and we’ve got four nights respite a month but so far in four visits the longest she’s done is 4 hours. Carers at home don’t feel like an option at the moment as on the one occasion she was left with her grandparents (happens maybe once a year) for an evening and she sees them weekly, after two hours attacked both of them.

We are considering residential care (to go alongside her specialist school) or a residential school. Her siblings have had their life severely impacted (we have locks on doors, people can’t come over, we don’t do anything together as a family) and I don’t feel we can ask them to give up even more and take over full time care when we are too old. And she will need care forever. She won’t be able to work, at the moment she can’t access even specialist clubs.

I’ve just about held onto my job which is term time only and I work at home but I’ve had to drop from four days to two as I’ve just not been able to cope. I’m thinking of quitting entirely as I feel utterly broken.

the outcome I think depends on the child and their disability and temperament and the support available.

That’s horrendous, I’m so sorry. I do think there must be so many children for whom respite isn’t realistically an option given their temperaments and challenges, even in the rare instances where they’re awarded it.

I hope you find a solution. It sounds like residential school could be really life-changing for all of you if it works out, but I also completely understand hesitating. Does it seem to you there are residential school places readily available if you do decide to go down that route?

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PrettyPolli · Yesterday 10:02

x2boys · 20/08/2026 19:38

The early years are very hard
But i did come to a place of acceptance
And whilst life can be hard
He is also very loving and often sits on my knee kissing my eyebrows which is his way of showing affection😂

Show quote history

The eyebrows thing is gorgeous!

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PrettyPolli · Yesterday 10:07

Bamboozled5 · 20/08/2026 20:09

My DD is 25 with severe learning disabilities, non verbal with PEG and a very rare genetic disorder.

She still lives at home, she goes to a day centre 4 days a week and we get a good respite package through direct payments. I know loads of other parents from years at special schools and college. Hardly anyone’s young adult has moved on to supported living yet.

I don’t know whether this is just the norm where we are due to quite good provision available for adults with SEN. At some point, DD will obviously need to move into supported accommodation as we will get too decrepit to manage or DD’s behaviour will get too challenging. She has extremely bad PMDD. I’m still trying to resolve this somehow but it may not be possible. I kind of feel my work is not yet done!

I’m regularly pressured by DH’s family and some friends to think of moving DD somewhere suitable. It will happen, I’m just not quite ready yet.

Thank you, this is really interesting. I’m guessing you’re not in Scotland? I ask because of the good provision you mention…

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PrettyPolli · Yesterday 10:10

Octavia64 · 20/08/2026 20:21

I used to teach in a unit attached to a mainstream school for children with disabilities.

their abilities and social skills can change so much. We had children coming over from special school to join some mainstream lessons as they were able to benefit from it.

most children and young people in this sort of situation are able to stay in education longer and we had a special sixth form which did mostly skills for life qualifications plus BTECs in things like music and dance.

some then went on to mainstream college to do vocational courses (one lad loved sport and did a personal trainer course) while others went to residential schools.

in the town I live in there are a couple of group homes for young adults with learning disabilities and they often come to community events.

Thanks for your post. A unit in a mainstream school is our preference for him, but we’ve been told chances of any kind of specialist provision are slim to none. So we will take whatever we can get.

Trying to make my peace with him likely ending up in mainstream, but no matter which way I look at it that doesn’t seem to be a decision that could possibly be in his best interests.

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PrettyPolli · Yesterday 10:21

dimples76 · 20/08/2026 21:15

My DS is 13 and has a learning disability, Autism and ADHD. He went to mainstream primary with full time 1:1 and now attends a special school.

I would definitely reiterate what others have said about connecting with other families facing similar challenges. I have mostly done this through local charities. So today we went to Moana themed singing and dancing workshop organised by one of them. I had tears in my eyes because DS did a fantastic job of following the moves and was also kind to his sister and other children. Things are not always like that - the biggest challenge is aggressive behaviours, death threats and abusive language.

I try to take each day as it comes with an eye to future planning. Mencap runs really good sessions on wills and trusts.

My boy has really changed the way I look at the world. I used to care too much about what other people think and was very self conscious. He is incredibly curious and gives me new perspectives on lots of things. He also makes me laugh a lot.

This is all really helpful - thank you. I’ll take up the mencap tip. Wills have been on our to-do list for a while but I have been so overwhelmed at the idea of finding out what I need to do to protect my son’s money that it keeps getting pushed.

The connection with other families thing is the biggest advice I’m hearing loud and clear on this thread. I don’t know why I haven’t bothered so far really. I think the day-to-day feels so busy that I haven’t even noticed how much time has passed since the diagnosis.

I know what you mean about your son changing you. I am naturally a very shy person, very worried about others’ thoughts, but now wherever I go I am centre of attention because my son is always screaming. I have found myself caring less and less about it. And have found myself in general (as terribly cliched as it sounds) reevaluating what matters.

The Moana event sounds lovely! Although it will never make up for all the difficulties, seeing them do something well and really enjoying it is such an incredible feeling isn’t it. Most parents of typical children can never understand how much something seemingly inconsequential can mean, Im sure.

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PrettyPolli · Yesterday 10:22

Pureclass · 20/08/2026 21:24

Would you maybe ask at the hospital if you could be put in touch with other families whose children have the same genetic condition?
Even if they aren't local it could be good to talk to someone over the phone.

My DS doesn't have a SEN disorder but has a rare bit of medical apparatus. Ive spoken to families all the UK about our lives and even met up with a few over the years.
We were put in contact by the hospital consultants/specialist nurses.

Gathering as much info as you can will be helpful along your journey

Wishing you and your family so much happiness. Your son sounds like a fantastic wee boy

This is a great idea. There is a facebook group for his condition so we see how other families are doing on there. However, they’re mostly in america and the system, and general culture, is so different there that it’s hard to really relate a lot of the time.

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sunshine244 · Yesterday 10:23

You will be told that a provision is unlikely but they say that to all families. In reality sadly it depends on how hard you fight, but also how much support the local mainstream primary can provide.

One of my children is an an autism unit. I was told it wouldn't be suitable, wouldn't get a place etc. What you need to do is use the SHANARRI framework to show how mainstream isn't working (which does mean you need to give it a go first). You can get advice on education law via Enquire and free legal support if you decide to go down the tribunal route via Govan Law. All parents in scotland who go to tribunal get free legal advice.

However, don't panic yet. Some primaries are absolutely fantastic with children with ASN. You can ask for staged intervention meetings, extra transition, support from e.g. speech and language therapy, occupational therapy, educational psychologist input etc for transition in advance. Find out what would be offered at local primary. Document any concerns or questions in writing. If you have a meeting you will get minutes. Make sure you ask for a TAC ASAP and don't let them fob you off saying theres loads of time. Ask to include your disability social worker, Ed Psych and any other relevant professionals. A lot of areas have outreach staff that specialise in ASN for the school region.

If after all the planning you don't feel school can meet needs ask for a referral to the councils internal ASN panel. Sometimes called transition panel or resource group or similar. This will need done early one e.g. our area it's Oct. This is the internal process for a placing request. If they say no you can still do your own placing request afterwards.

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PrettyPolli · Yesterday 10:24

sunshine244 · 20/08/2026 21:47

I agree with the suggestions to try and get to know other families with children locally with additional needs. My two don't have learning disabilities but autism, ADHD, Tourette's, anxiety...

I've got to know lots of lovely parents locally through carer groups. To an extent the circumstances have been more important than the diagnoses. Whether the issue has been sleep or eating or school etc there's always someone who has been through similar.

Enquire are great for ASN and school info https://enquire.org.uk/ The presumption of mainstream in scotland can be problematic but it can be challenged. Having learning disabilities makes it muhc more likely to get a specialised placement than other issues.

If you were willing to share which region you are in someone mihht be able to share group suggestions. In my area, gor example, there are parent carer groups, some local informal parents groups, and ASN play charity, and lots of groups like RDA, disability sports etc.

Thank you so much for this. I hope you and your two are doing well. I’m in Glasgow 😊

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sunshine244 · Yesterday 10:26

sunshine244 · Yesterday 10:23

You will be told that a provision is unlikely but they say that to all families. In reality sadly it depends on how hard you fight, but also how much support the local mainstream primary can provide.

One of my children is an an autism unit. I was told it wouldn't be suitable, wouldn't get a place etc. What you need to do is use the SHANARRI framework to show how mainstream isn't working (which does mean you need to give it a go first). You can get advice on education law via Enquire and free legal support if you decide to go down the tribunal route via Govan Law. All parents in scotland who go to tribunal get free legal advice.

However, don't panic yet. Some primaries are absolutely fantastic with children with ASN. You can ask for staged intervention meetings, extra transition, support from e.g. speech and language therapy, occupational therapy, educational psychologist input etc for transition in advance. Find out what would be offered at local primary. Document any concerns or questions in writing. If you have a meeting you will get minutes. Make sure you ask for a TAC ASAP and don't let them fob you off saying theres loads of time. Ask to include your disability social worker, Ed Psych and any other relevant professionals. A lot of areas have outreach staff that specialise in ASN for the school region.

If after all the planning you don't feel school can meet needs ask for a referral to the councils internal ASN panel. Sometimes called transition panel or resource group or similar. This will need done early one e.g. our area it's Oct. This is the internal process for a placing request. If they say no you can still do your own placing request afterwards.

I've just realised that is probably like a foreign language 🤣 This is why local support groups in your own council area are so important. Each area has different jargon and a different process for placing requests. But you would likely have to ask for what you feel is needed - they won't just offer it.

sunshine244 · Yesterday 10:31

Glasgow isnt my area sorry but here's a few links.

https://theyardscotland.org.uk/get-support/our-centres/glasgow/
I know someone who works here and it sounds amazing.

This facebook group might be useful too: www.facebook.com/groups/glasgowaslforum/?locale=en_GB

Also have a look at the ASN page for the council if you havent already. You have the right to ask to visit ASN schools you think you might like to apply to. www.glasgow.gov.uk/article/4726/Additional-Support-Needs

Bamboozled5 · Yesterday 10:56

By saying ‘good’ provision, I suppose I mean provision that actually exists for adults with severe learning disabilities for most of the week! I’m not commenting on the standard of the service, it’s probably average.

We are in S England. I do know someone in Scotland with an adult daughter with the same condition as my DD and as far as I know her DD has a team of carers and lots of activities. She might be CHC funded though.

FormerCarer · Yesterday 11:35

I’ve worked in supported living here in Glasgow/East Dunbartonshire and there absolutely are placements for supported living. (In the community not care homes) Excellent ones too. Yes it can be harder to get them and longer waiting lists but they do exist and I know of people who have gone into them recently who didn’t have to wait too long. The trouble is of course a lack of social workers and large workloads.