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

[PrettyPolli]

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.

School thru a college settings takes you to 21 or 22 ...you have time along the way to look at options.
Get to know local parents who are at the next stage.at 14 or 15 you should begin planming adult hood .maybe he has a special interest by then who knows
Potentially he could be in a supported accomodation near to you so you can look out for him without being 24 7. (DS 29 has 24/7 one to one)
Dont giveup work necessarily you will need your income and pension and to take him on nice holidays in future (specialist holidays can be expensive or you might need to pay a carer to come with)

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.

Thank you. Can I ask if he still lives with you now?

This is so helpful, especially the part about beta blockers which I didn’t know could be used in this way. My son is not autistic as far as we can tell but he does have some traits in common with autistic children, particularly sensory issues and the triggers for his meltdowns.

I’m sorry you’re in this club too. I have to say I am encouraged by you saying it’s got easier (while of course not being easy - I never want to downplay how relentlessly tough this path can be). My huge fear is that right now is the easiest my life will ever be. And a lot of day-to-day stuff is already a tremendous struggle so that’s daunting.

Im inspired by how well you have planned for the future. I am concerned that those options may not exist here in Scotland - there’s a poster above whose experience suggests that. But as with most things it’s probably a postcode lottery…

I hope things continue to get easier for you and your family.

Yes it sounds absolutely crazy to say but nursery staff helping with school applications have said we’re actually “lucky” in a way that my son is so clearly disabled when it comes to the system. It’s harder to deny his situation when he has a named syndrome that is known to be severe, he looks a bit different to most children and so on.

My experience is through many years of volunteering with Riding for the DisAbled (RDA), where I have got to know many families with learning disabled members.

Some parents have insisted on keeping their adult children living at home with them. That has been successful where the DC are compliant and even-tempered, usually if they have Down Syndrome.
Others have settled their DC, especially those with challenging behaviour or when it is becoming likely that the DC will outlive their parents, in care homes, with well-qualified staff who can meet their needs.

That doesn't mean that the parents wash their hands of their offspring, often they come to watch riding sessions. Some of the parents take their children on holiday/short breaks/ evenings out. Some of the DC spend time at their parents' home, either for a meal or overnight but will have a familiar place to live when the parent can no longer have any input.
There is support available including for young children, although you might have to.push for it, but please don't think you have to give up everything you enjoy doing to care for your child forever more.

Thank you for your wonderful uplifting post. It’s that hope for the best, prepare for the worst thing. Stories like yours help me keep that hope for the best.

I’m so pleased your daughter has found her place and is thriving. Much love and luck to both of you and her lovely friends for the future.

There isnt much tbh i
As the parent of a severely dissbled teen
We now get a package of respute ( or did but thats a whole other thread) but it took years to get i dont want to come across all doom and gloom
But realisticslly there is not a huge amount of support .

My friend’s sister lives in a shared supported/adapted home with other disabled adults, as parents became too elderly/unwell to take care of her. She seems really happy and has a fantastic time, living with friends, lots of activities and family visit very often.

Perhaps it depends where you live but you certainly do have to hbe proactive.

Your son sounds a lot like mine. Mischievous, gorgeous and challenging certainly! Congratulations on making it to this point. I can’t imagine how exhausted you must have been when he lived with you and I’m so glad things are working out. I really hope you’re finally getting some of your life back now. You’ve MORE than bloody earned it!

What you describe sounds like a bit of a model for my son’s path but as I’ve said above, there’s that uncertainty about those services existing where and when we’ll need them. Time will tell - and it’s a starting point for me to look into, so thank you.

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.

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?

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.

We are having similar issues with respite
He is also allocated four a month
But his behaviour is becoming increasinglly challenging
And its been paused over the summer holidays when i need it the most .

I can completely imagine what you mean about gradually feeling more like a carer. Right now most of my friends are in a similar life stage so we are all run ragged by small children. Yes my son is more difficult than many children, but we’re all tired, we’re all dealing with varieties of the same problems.

By the time he’s 17 they will be entering the “parent-to-an-adult-child” phase of life. It’s just so different for those of us who will never fully leave the parent-to-a-dependant phase.

I absolutely agree comparison is this he thief of joy. When I shut out the world I feel so grateful my son is my son, and I truly believe I wouldn’t change a thing even if I could. It’s only when I see how easy others (seem to) have it I think why me? And I don’t feel good about thinking that.

Love to you and your daughter, and thank you for answering.

@x2boys, this holiday has been utterly brutal. I think this has been the hardest one yet. I’m not sure how respite will pan out for us, we’re due to have an overnight but we’ll see what happens. I’m so sorry you’re in the same boat. It’s absolutely exhausting isn’t it.

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😂

Yep and the heat hasent helped
When nobody else can cope parents have no choice in the matter.

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.

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.

Can I ask where you live where the provision is good?

Everyone is different so I can’t tell you your future but dsd is profoundly disabled, went to a specialist day school until 19, residential college to 22 term time only then went into supported living at 22 - 5 young adults and 24/7 care

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.

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