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.

Sorry to bump so soon but this is falling off the front page! I’d be so grateful for any responses.

It's hard to envision the future while he is still so young . I don't know exactly the system that he will be involved in . I worked with young adults that from an early age had been involved in special education tailored to their needs . With that came whole teams of people trained in helping them navigate their place in the world . So behaviors like hitting and running will be addressed and hopefully managed . He will develop coping mechanisms too .

I hope that you are in an area that will also provide supports and guidance for parents . Remember that just like any other child noone can predict exactly how his life will proceed . It is just be able to meet the challenges as they come .
Incidentally , the young adults I worked with all their own personalities, likes dislikes and you learn to adapt around them like anyone else . Some loved doing arts and crafts , some liked music , some very friendly , some shy .

I hope you continue to enjoy your little boy and realize that the future can be good .

Thanks so much for your response. I really value your insight, having had professional experience. We don’t have exposure to others in our situation or to anyone who specialises in children with additional needs. He’s in a mainstream nursery currently.

I know, of course, that you’re absolutely right that it’s impossible to predict the future and he will be whoever he will be. As I said, he already has a really strong, charismatic personality and I do get so much joy out of just being with him.

I suppose it is just very belatedly fully dawning on me that I am almost certainly going to spend my entire life parenting a small child, but with adult strength. It’s such a terrifying thought and so hard to imagine what it might really be like day to day.

I know two families with disabled adult children, one lived in a care home as an adult as his needs were too much for his parents (mother had dementia) and the other lives in a supported group home and works part time.

Another who lives abroad is still with parents and attends a day centre and when parents pass a sibling and their family will move into the family home as carers.

Thank you. I hope they’re both thriving in those settings.

I hear so much that’s negative about social care. It scares me to picture him in a care home or supported living without me to look out for him. Scary in a different way though to imagine caring for him forever myself, even once I’m old.

Interesting. I wonder how the sibling feels about it?

My son does have a sister but I’m very keen for her not to ever feel pressured to provide care for him. But then if there’s no other option, she inevitably will feel that pressure, won’t she?

My son is 16 and severly autistuc with severe learning disabillties and non verbal
Hes always gone to a special school hes just about to start " 6th form" in his school
They call it 6th form but he will be learning basic life skills
Its difficult to say where your son will be at 16
So i can only give you my experience
We have had many ups and downs and life can be very chsllenging
I gave up work but not everyone does
The best advoce i wss given was find your people
Meaning get to know parents in a similat sitution look at your local offer to find locsl groups for children with disabillities

It's really positive that you're thinking about it now. You can start planning and getting to grips with the legal rights you and your child have.

You probably already know, but the basics start with getting an ECHP, social care assessment for respite (don't overstate your ability to cope - having respite is a really important way to keep yourself healthy).

As they get older, look into residential schools to help develop life skills. Use support groups for your child's condition or similar conditions. People in support groups are so knowledgeable about "the system" not just about specific diagnoses or conditions.

Nowadays there are lots of supported accommodation schemes . Your son may never be able to live independently but it doesn't mean you or your daughter will have to be his life long carer.

I would recommend you do seek out organisations that can support and guide your family. Until you are involved with it many people don't realize how many other families are going through the same thing . As you say there are professionals that have experience and resources to help .

I appreciate you sharing this, thanks. I’m sorry you have had challenges. I don’t suppose there anyone in our position who hasn’t. I know I should really be connecting with other parents of disabled children. Possibly I have been a bit in denial? But as we are now doing his school application I’m realising how far our experience is starting to diverge from my friends with abled children.

Mine was probably not as delayed as yours but he did improve remarkably over the years in a non-linear way so hard to predict.

UK seems quite well set up for children and adults with severe learning difficulties, I know several through their mums and most are at home and go to 'work' a few days a week doing community stuff which gives them a focus and sense of achievement. Some in supported accommodation who do thrive, it seems to attract the right staff who desperately want to help the young people love a happy life.

Your question about sister taking over once parents have passed, one of my friends is in this situation and I asked, she said it wouldn't even occur to her not to. Her mum helps care for gc and she's happy to have her sister when needed.

Take it a day at a time, get help sorted early rather than waiting until you can't cope.

And if you haven't already look into dla/pip. You will be eligible and it can be spent on respite or hobbies or whatever will enhance your lives.

Thanks. We’re in Scotland so things are a bit different here - no EHCPs and the expectation is that very child goes to mainstream, but we’re preparing to fight that all the way. We are only now starting to engage with “the system” due to his school application - up until now he’s been in mainstream. It’s all dazzlingly complex and seems so unrealistic. I cannot believe he could possibly learn in a mainstream classroom, especially since there is no budget for one to one support. But apparently this little boy who can’t even put his own socks on yet and chews up any object he gets his hands on is meant to sit down and learn his alphabet and times tables…

I have a 12 year old with ASD and a severe language delay. He is quite independent with personal care now but at six was still in nappies. He has had a lot of intervention with very positive results, ABA therapy gave him the ability to express his needs and leucoverine gave him much more expressive language. He will never live independently and we are hoping he will move to residential school at 18 with an independent living placement after that, with visits home weekly. Our plan is to retain POA of health and well being so we play an active part in his care decisions.

He takes a beta blocker for anxiety which cuts his meltdowns by about 95% - this has been a godsend as he is bigger than me now and the meltdowns were getting scary. He took this as a very young child as well, it worked then too, and is a low impact drug.

i remember the fear of the future so well and it sometimes rears its head again but having a plan is key. It definitely got easier for us as he got older but always a challenge. I do not work but this is a choice for easier life rather than necessity in our situation, if I needed or wanted to go back to work it could work.

That’s really lovely and commendable, but in no way should it be expected for siblings to take care of disabled brothers/sisters. It’s not fair to expect that in any capacity and OP is 100% right not to impose any pressure on her daughter. She needs to live her own life.

Having read your update, the navigating of the system is such a challenge. Our ds ‘benefited’ by the fact that his needs were apparent at an early age so he got an ehcp before he started school, I know things are different now.

My daughter is 13, she is autistic and has a learning disability which impacts her language and understanding. I remember the dread I felt when she had her diagnosis at age 3, and I worried about all the same questions you have for your son. I'm happy to say the future is so bright :)

She attended mainstream primary but is now in a special secondary school, and she will be able to stay with them until she is 18 (they also have some lifelong learning places up to 25). She has friends at the school who also still love Bluey and Peppa Pig, and she is working on her independence skills through the school curriculum.

She can make her own cold meals unsupervised, and she can take part in most elements of cooking hot meals as long as someone is with her. She can also perform most personal care herself and she can make her needs known through some limited speech.

We do a lot of social stories together and we practice scenarios (e.g., we role played how to order food at McDonalds and what to do on a tram).

Looking ahead, she will never live alone and we will need eventually to look at sheltered living in some capacity. However, you just take it one step at a time and you celebrate the wins as they come.

Oh and ds has two siblings who are older. They have been named as guardians alongside my niece but we do not expect them to play a more active part in his care other than keeping an eye on him in the future when we are gone.

Well done for being brave enough to think about the future. You don't know how your son will develop and what life skills he will acquire, but it really helps you as parents to plan ahead.

My 24 year old son is autistic with a severe learning disability, challenging behaviour and is non verbal. He's gorgeous, and mischievous and funny but we made the decision in the very early days that he would have to live elsewhere as an adult. Most importantly, we told every professional we came into contact with, so when the time came things happened relatively quickly. He moved into supported living when he was 19 and is happy there and well looked after.

He lives in a flat on his own with a 2:1 staffing ratio during the day and 1:1 waking watch at night. That's probably a team of around 10 people in his care team, no wonder the two of us were on our knees by the time he left home.

As PP have said, take each day as it comes, don't wait to be offered help by statutory bodies, demand it. Take all the respite that's available.

My DD is 17 and has ASD and a learning disability. Family life with her is lovely. She is funny and outgoing and enjoys time with her family. But she is very dependent on us and therefore as she gets older I am feeling more and more like a carer.
i have always worked part time and retrained 10 years ago so I can do a job that is flexible, but saily
life still revolves around her.

looking forward and in to adult life we are starting to extend the adults she spends time with so she and us can be more independent of each other. In adult life i
would like her to be in supported living.

her older brother will not be involved in her daily care we would hope to get that set up long before we die and for her to be settled. But he will help manage her Mooney and I would think be responsible for that after we are gone (should be wish to be).

oh and the best thing we eve did was move her from mainstream to special school.

i would say that life is different to other people’s and that I am fine with that until I compare myself.

unfortunately I never did make friends with other parents of kids with
disabilities . Not sure why.

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.

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! 💐💐💐

I think the easiest time period was probably secondary school at a special school (he was at mainstream for primary). Regular hours, friends and lessons all at a similar level, transport provided, very predictable. I managed to work more hours during that time.

Once he reached 19 he moved to a mainstream college with a special needs unit, days went down to 3, start times and finish time were less predicable and harder to work around his hours. summer holidays were longer and no “kids” clubs.

We don’t have exposure to others in our situation or to anyone who specialises in children with additional needs.

Then my advice for right now is to get involved with any groups you can find that will give that input. There maybe something locally or it may be more national with an online element but there will be others in your situation, slightly or a lot further down the time line whose experience and knowledge will be so very useful. Support groups, special activities or even residential opportunities to have a holiday with care alongside will all make the future more plannable for you all.