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To want to know if you know of any adults with Down Syndrome that live a truly happy and fulfilling life

(61 Posts)
Vanessatiger Thu 08-Feb-18 00:13:36

I have a close relative with Down Syndrome, still a young child (5) and the prognosis isn’t looking great- challenging behaviour, hyperthyroidism, glacuoma, speech delays, difficulty with gross and fine motor skills. They are having her assessed for autism as well. sad said child pees and poos constantly in their trousers without any indication they have done anything until we smell or see it. We put diaper on her but she’d remove it herself. They are capable of dressing themselves when in the mood. She’s very stubborn as well and throws about 10 tantrums a day. Sometimes we don’t know why.
People who gush about their child with Down Syndrome as being special and a gift, good on you but all I can see is loads of doctor’s appointments and fighting the authorities over their rights over x and y. And dealing with a challenging child who won’t dress or undress, who would spit out food on the floor, in restaurants, at the dinner table. Who’d not respond to consequences or reward/punishment. Who’d scream out loud for something we don’t know why and let’s say all the time during the day. It’s very very challenging and it’s breaking my sibling. I’ve never seen my sibling this unhappy and this tired and this resigned about life. We love said child to pieces but the whole family wish the syndrome would go away. I’m sorry if I offended anyone with my remarks.

Will there be light at the end of the tunnel?
Will it get better? Will people with Down syndrome eventually hold down jobs, look after themselves and find love? I read on DailyMail they do (but it’s the DM). Any real life experience here?

ReggaetonLente Thu 08-Feb-18 00:16:46

My mum used to teach young people with DS. It’s a wide spectrum. Some passed exams, had jobs, even relationships, while some still behaved similarly to toddlers. I think it’s very individual.

I’m sorry things are so tough for your family right now.

Footiegirl84 Thu 08-Feb-18 00:20:23

Message withdrawn at poster's request.

Vanessatiger Thu 08-Feb-18 00:22:15

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

GinnyLovesGin Thu 08-Feb-18 00:22:15

What’s offensive about it?

Onlyoldontheoutside Thu 08-Feb-18 00:23:06

All children with downs are not the same.No one can generalise and for all those with loving children who grow to be fairly independent adults there will be many others with different stories to tell.
You're niece is an individual,all you can do is continue to love her and support her parents.

RitasEducation Thu 08-Feb-18 00:23:23

I had an uncle who was born in 1940's. He lived a mostly independent life, he still live with my Nanny until he passed away at 49. He had a job in the bakers. My day did not realise his brother had downs until my dad was 11.

I see lots of people with down syndrome working in the supermarket and restaurants now.

The little boy in my dds class is amazing. He is one year older than his peers and a real character, he has been on tv, he is a little celeb. Confident and a well loved little boy.

Hopefully for your relative there is light at the end of the tunnel.

Footiegirl84 Thu 08-Feb-18 00:25:43

Vanessa I reread your post. I don't have 3 kids with DS but kids with multiple disabilities including autism and ADHD. I'm sorry I judged you. Some days I too wish autism did not not exist. I see violence and much of what you describe every day. If you want to pm I'm here

LonnyVonnyWilsonFrickett Thu 08-Feb-18 00:32:28

I'm not an expert in Down's syndrome but from my own PoV as the parent of a disabled child: they do continue to develop. Maybe not at the same pace as everyone else, but things do change. One thing that really helped me was realising that my Ds is developmentally around a third of his age behind. That wouldn't be helpful to other parents perhaps, but to me it was a reminder to compare him to him, NOT to his peers. So there was no point expecting him to do things that other 5 year olds did - but it was amazing to look back and see how far he'd come.

I also think the narrative around Down's syndrome is enormously unhelpful for families who are at the sharp end of dealing with significant challenges. That's probably not helping. It must be really hard to feel as a family you have to keep going with this 'sunshine special child' stuff.

Vanessatiger Thu 08-Feb-18 00:32:51

I also feel bad for my niece for being condemned to such poor quality of life riddled with health issues. She seems mostly uncomfortable and sometimes in pain and not able to tell us. sad

Footiegirl, sorry about having to deal with violence on top if it all. How do you cope? Big hugs

Footiegirl84 Thu 08-Feb-18 00:36:58

I love my kids very much and the simple answer is because I have to. No one could look after them as well as I do. I'm not going to lie to you. As my oldest has got older it has got harder but also has improved in other areas. It's really down to individual. I doubt my kid will live independent.

Sherlockmaystealyourpug Thu 08-Feb-18 00:39:05

My brother
He has DS, and autism (diagnosed late), multiple chronic health conditions and has had severe mental health problems in the past.
He is, however, now in a brilliant placement and enjoys where he lives. He loves his family. He loves his specialist interests. I would say he is happy an fulfilled. It hasn't been an easy road for him or for our family. My my two other siblings and myself have also all suffered various difficulties/mental health issues/health problems which we too have had to navigate and really it isn't too much different for my brother- from his perspective (I think it was harder for my parents at time).

WhatToDoAboutThis2017 Thu 08-Feb-18 00:41:38

I had a close relative with Down’s Syndrome; she lived well into her forties and had a good quality of life. She couldn’t work but she was very happy.

After her parents died, she flourished. They’d been mollycoddling her and “saving” her, holding her back from the world. Once she could get out and into it herself, she was a completely different person.

I’ve also worked with a lady with Down’s Syndrome before too; she was also absolutely lovely and really enjoyed her life.

Sherlockmaystealyourpug Thu 08-Feb-18 00:41:46

Just to add, you asked about jobs
My brother doesn't have a job and would struggle to hold one down. However as I said, I think he would consider himself happy and fulfilled at the moment.
But I've also worked with many adults who have DS and a lot of them have been more/differently able than my brother and have held down and enjoyed several different kinds of jobs.

Vanessatiger Thu 08-Feb-18 00:56:03

Thank you for your replies

Rinoachicken Thu 08-Feb-18 01:07:54

I work with adults with severe learning disabilities, many of them have DS. It is a wide spectrum and some are vastly more independent than others and with varying additional medical needs.

However I would say all of them have been able to find their place in the world; somewhere that they are happy living that is appropriate for their needs, and able to spend their time doing things that make them happy with people they enjoy being with.

Redglitter Thu 08-Feb-18 01:14:16

My neighbours grand daughter has DS. She's probably late 20s/early 30s and a real character. She has no filter whatsoever & was grilling my brother about work he was doing on my house before I moved in. She's also commented on the size of my wine glass when I was sitting out in the summer grin

She goes to a club several days a week then gets the bus either home or to her grandpas. She's apparently got a good circle of friends and a good social life.

Not everyone is the same but she seems happy with her life and her parents are happy with what she's achieved and how independent she is

Wdigin2this Thu 08-Feb-18 01:33:05

I have some experience of children with various disabilities such as DS, and in the one case, the child was wrapped in cotton wool, and basically kept away from the wider world. This young adult now, has no real life experience, no ability to do anything for themselves, and therefore a very restricted existence. I believe children with any disabilities should be allowed, encouraged to reach as full a potential that they are capable of.

LolitaLempicka Thu 08-Feb-18 02:03:05

Watch The Undateables on channel 4, there are plenty of people with down syndrome who lead very fulfilling, independent lives.

Chocywockydodahhhhhh Thu 08-Feb-18 07:24:19

I know one man with Downs Syndrome who runs his own company and employs lots of people. With help of course but don’t most people have help to run a big company

CallMeOnMyCell Thu 08-Feb-18 08:23:35

“I’m sorry you have to deal with 3 of them” angry they are people not dogs! Your post is offensive and in poor taste.

lljkk Thu 08-Feb-18 08:33:34

My cousin (who has DS) has had a mixed bag of life's tribulations.
You could not have told how things would turn out when he was still 5yo, though.

Pfftkids Thu 08-Feb-18 08:33:59

I have a close family member that when young done similar things to your niece. He did grow out of most things.....apart from the stubbornness typical 🙄😂 but he now lives on his own with supported help, goes to clubs, fishing, holidays and meets up with friends. He just took a little longer to learn things but got there in the end

SisterNotCis Thu 08-Feb-18 08:50:02

How a man with DS enhanced his family's life . mrsdowsonsdiary.wordpress.com/2018/01/04/steven%E2%9D%A4%EF%B8%8F/

SomethingNastyInTheBallPool Thu 08-Feb-18 08:54:23

OP, I’m sorry your family’s having such a tough time. My DD has DS, autism and quite a few medical problems, and it can all feel relentless and overwhelming at times. But she’s a bright and generally happy little cookie and I fully expect her to have a good life. I come across quite a lot of adults with DS, and of course how independently they live varies hugely, but I’d say on the whole they seem happy and fulfilled. There’s so much more support and so many more opportunities these days for adults with learning disabilities.

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