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

[Vanessatiger]

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. :( 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?

your niece have lots of health issues and with possible autism on top, it's hard. It sounds like things are not under control yet - I mean medication, behaviour management , etc. With the right approach things do get better.
Does your sibling have enough support ? Is there a local group for families who have children with Down syndrome? It could be very helpful. Down Syndrome association does different courses for parents and family members and has some resources on the website. They are good as well.
She is 5, it's difficult time because she just started school ( I presume) . A lot depends on school , after finding a right one it's much much easier - you are in routine and just follow it.

As already said it varies a great deal.

I have neighbour with DS, he has his own flat and works in McDonalds, I have never seen him serving, usually he is keeping the car park clean.

I know his mother lives near by but I do not know what support she or anyone else gives.

My son is 8 and has DS, I'm here if you'd like to PM me.

DS groups can be great, but can also be tough when your child is the one banging their head on the wall or curled up in a ball because it’s too noisy while others all play nicely.
Second the suggestion of contacting the DSA, though. They have a very clued-up clinical psychologist who does phone consultations with parents, which could be helpful.

Don't look too far ahead. Things can get better the right school and behavioural input..... Not down 's but ds has a different chromosome condition.. .that age was hard. At 21 living in supported living and enjoying life at sen college.
Otoh... my exp has had some extremely miserable adult years with severe mh issues (and this was far harder to deal with for me than asd and sld in ds). But again the right input and therapy can help...

Yes. One of my neighbours are two friends who have downs syndrome. The house is owned by one of the parents and they check in on them. I know one of them works, I see her the most and chat to her. Don't know about the other woman. I am sure like all adults they have their ups and downs in life, but they seem to be fine.

Downs Syndrome though covers a wide range of abilities and health problems in reality. I did used to run a group for teenagers with disabilities. The teenagers with Downs Syndrome who attended were amongst the most capable in the group. It basically means a learning disability and sometimes heart problems. But people with learning difficulties can live a happy life.

Also 5 is still very young. There is lots of time for continence to be developed. Glaucoma and hyperthyroidism are both treatable, and with the right treatment should be fine.
I thought it was common for kids with speech delays to have challenging behavior? When speech comes things will hopefully get easier. Yes this child will never as an adult have a high powered job. But there is still lots of time to develop the skills to manage better in life.

My uncle had Downs and died at the age of 61. He lived at home with nan, attended a day centre 5 days a week. He was able to shower, prepare easy meals that did not require cooking- sandwiches, cereal etc he could do, go to the shop with a shopping list and walk to town to get a hair cut. He was unable to understand money (but our local shop were brilliant, however this meant he was open to financial abuse), he could not use the oven, job or microwave. He was unable to use public transport independently.

He was always polite and well mannered, and hardly ever had an outburst. However after nan died he deteriorated- shouting, wondering in the middle of the night etc. After a lot of hasstle with social services they finally admitted he had dementia. He went into a supported living service for the last 5 years of his life, which broke my heart. I felt we had let him andy grandparents down. But we were unable to manage his behaviour any longer.

What the prognosis for your niece is, is anyone's guess really. No one can tell you what her world will look like in 10,20,30 years time. It really is an individual journey

I'm sorry to read your post. I have a DSis with a special needs child and it's a huge challenge, this child will in all likelihood never live independently but is very very loved. DSis has no choice but to keep going day to day and does so with remarkable good humour, stoicism and resilience.
I'm glad the 'sunshine special needs' thing has been mentioned as SN is a HUGE spectrum - if you are the parent of a child with severe SN, being told how lucky you are has to rankle when you see non SN children going about their lives. To call it 'lucky' doesn't acknowledge what a hard job it is caring for a SN child.
The only path forward is acceptance and finding ways to celebrate all the good stuff about being a parent, regardless of the challenges your particular SN child may bring. You can't approach it as 'light at the end of the tunnel', you need to find the chinks of light in every day.

Snowsky it seems wholly obvious your uncle suffered greatly from the bereavement. I wonder if the right support was given...a key person in his life nan died and his behaviour deteriorated ...well cause and effect?
Yes planning is everything.

Any kind of special need or health or.disability is a challenge. You can't know what adulthood will bring. But.... with right support yes can be happy and fulfilling.

Focus on now. Ds toilet trained age nine. The impossible or improbable is possible.

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

I do indeed. While he does have a level of care, in that he lives and works in an Independent Living Village, he has his own studio apartment there, goes to work, earns his own spending money and contributes towards his own major living expenses.

It took him some years to get to this level of lifestyle and, as far as I know, it was often far from easy for him and his family. He now goes out for meals, social outings, cinema, library, doctor and dentist, even occasional holidays ... all the things you might do ... and while these continue to have a level of care, it is more at a guidance and companionship level (rather than 'looking after him' ), as far as I know.

The last time I heard from his family, he had a girlfriend!

Having said all that, I also know there are many different levels of disability among people with Down's Syndrome. I am so sorry to hear of the struggles your family face. I hope things get easier and that you all get some support.

I saw this the other day.
www.bbc.co.uk/news/amp/business-42353259

I don't think it's helpful to compare two people with down syndrome some may be fairly mildly affected and some profoundly , my son doesn't have down syndrome but he does have a much rarer chromosome disorder and as a result has autism and learning disabilities at the moment hes quite challenging and has very complex needs but hes seven I'm hoping with the right support things get easier but hes very loved and you keep going as s aren't because you have too.

Not an adult, but a good friend of mine has a teenager with DS. He is now also being assessed for autism.

He's somewhere in the middle of the spectrum I'd say - he doesn't have some of the more serious health issues, but they don't think he'll live independently either. He's a very happy boy (he walked my friend's sister down the aisle when she got married as their father died some time ago; he was so proud of himself!), but they do have some boundary issues with him (nothing serious; just getting a bit too excited at girls on tv, that sort of thing).

I think the bottom line is that you just can't tell at this stage, unfortunately, because the spectrum is so wide. It's natural for you to want to help your relative but you can't give that concrete reassurance by other examples sadly. You obviously care a lot though and I'm sure you're a great support to the family

My relative in his 40s lives a happy life in an intentional community. For now. Until the funding landscape changes again. The stress has taken its toll on the wider family however and his parents and siblings have all been affected in various ways.

It also nice to know that there are positive examples but spectrum is so wide and some people with DS have additional issues which affect them more than DS. So try not to put additional pressure on your sibling by comparing your niece with other children with DS.
The only thing I noticed all children with additional needs are doing much better when wider family is supportive and inclusive.

Perhaps, zzz, OP is sick to the back teeth of the faceache memes and the misconception, having seen the reality of Down's. She's not comaring DN to an NT child, she's just getting things off her chest and so she bloody well should.

A family friend has a son with Down Syndrome who is now in his early forties. His mother was thankfully only 21 when she had him so is still in good health as he needs quite a bit of care. He works in his brother’s cafe clearing and washing dishes which he seems to enjoy but unfortunately has poor communication skills.
He is still very much dependent on his parents though.

You could have been describing my cousin with DS, when we were growing up. She is turning 40 this year.

She is on medication for psychiatric disorders now but to say her parents struggled is an understatement. It is very difficult to judge how many of her issues may be common to others with DS- I suspect in the 1970s/80s they knew less then they may know now but I do think my aunt and uncle suffered from a disinclination to believe she could have something more than DS - they had this idea they had to tolerate and endure whatever behaviour arose and didn't seek help early enough or act on advice when they did get it. Everything improved when she got the right treatments for the other issues.

Some parents manage better than others ; some parents manage certain type of children and certain types of issues better than others.

My aunt and uncle also didn't seek any external support to help them deal with their anxiety and upset.

All of these things I am convinced are a factor in the outcome for a family with a child with additional needs like DS.

My cousin has s job and lives in s home with other women her age. She really enjoys working. They are all in a good place now!

My Auntie has DS and is non verbal she has lived in some kind of care home all her life, but I believe she has had a happy life and is still alive in hers 60s. My grandparents were never able to really look after her though.

My son’s oldest friend has Downs - they met at nursery and are now aged 27. He has 2 jobs in local cafes and has his own flat. He has carers who stay with him overnight but gets himself to work everyday as well as going to local gym. He is a top young man

I know a lad in his teens with DS and a dual diagnosis of autism. He’s doing very well. He was late to be toiletvtrained and it was school that eventually sorted this. No idea how but it worked. He displayed a lot of ASD traits when younger but frankly they have greatly improved and he may not even reach the threashold now.

He used to be very challenging and run off in a frightening and dangerous way if he got the chance, again, this has improved so much.

His speech is a challenge but continues to improve. He can read quite well and is loved by many. He has huge enthusiasm for life and his parents have taken every opportunity he’s been offered despite it sometimes being to their own detriment.

At five there is no way of knowing how this little girl will develop. One thing is for sure, she is very far from the finished product. Patience and perseverance can bring amazing development and that can continue throughout life. Good family support, community support and a great school are all tremendously important and yes, it’s an absolute disgrace that parents have to face such battles to get the right education and support for all disabled children.

My brother in law had it, he was in his early 30s when he died he couldn't talk, or walk very well, and needed taking to the toilet. . But I've also seen young people with downs hold down jobs etc