Disability in your children.

Sadly, I have had involvement with several families who have child after child each one more seriously disabled than the last. Its their culture. In each case the parents were closely related. A huge commitment for the schools, hospitals and other professionals concerned.

I don't think anyone can prophecy the costs of any child at any point in their lives. The question of disability is directly related to the provisions society makes. Suppose you knew before hand that your child would have mental health difficulties, maybe a breakdown would you not have that child? What is an acceptable disability and what is unacceptable?

notanan the cost of a disabled child will depend on the disability. For some minor problems there will be few if any costs and an able bodied child could cost you a lot more.

Not really a disability but -

My brother and sister in law tried for 7 years to have a child,
they had a son, we were all thrilled. When he was 11 months he
was playing with the telephone and bumped his head , very
badly bruised face, rushed to the hospital, they sent him to
a hospital 50 miles away, he was haemophilic, this was in the
80’s, a very frightening time.

2nd pregnancy they were advised an amino, a girl , such relief,
but miscarried .

They agonised about another child, factor 8 was available, they
had a son, haemophiliac.

For years it was racing to Cardiff , night, day, sometimes twice
in a night, with the two. Bleeds happen not only from bumps,
joints bleed from stress, cold weather.

They are now adults, one has accepted it, one hasn’t, he is
often angry .

There was no haemophilia in my sister in laws family.

It would depend on how rich I was. It takes a lot more to set up a child with disabilities for a happy life as independant as possible. With a lot of money you can suppliment OT, Physio, SALT etc in the early years, chose the right education to meet their needs in the middle, and set them up to be as indepenant as possible in adulthood

Without money. No. Noway. You spend your (and their) life fighting for the very basics, as for enrichment, forget it! Even things lile being told that they wont have funding for adult nappies and personal care!

Of course we didn’t know whether they would or wouldn’t have a disability - but you rarely do. And even if you know they will you don’t know what it means in practice.

Some people who share my son’s diagnosis live independent lives to great acclaim and are hugely successful. My son will never speak and requires 24 hour 2:1 care. I don’t think his life has any less value though. Any anyway I wanted to be a mum to more than one child.

Well I had two children after having eldest son. So yes I guess I would.

My original point was ,if you knew this was more than likely to be the case ,would you still go ahead?
We seem to have digressed into a question of if a child was born with problems when it wasn't expected what would we do.
We surely would do the very best we could to make the child happy and get the best out of life.
I for one would not go down the road of bringing a child into the world knowing that child would have a disability.
Sorry to have trodden on some toes.

A cousin on my ex husband family a very very much loved Downs has recently died at age 69 he was not a high achiever but lived a happy life going to day centres doing simple tasks with his friends all his life My neighbour has a adorns age 24 he cannot live independently but is a good artist and cook and enjoys life Although as a family they are restricted I know his mum wouldn’t change him for the world
I too don’t see dwarfism as a disability but a difference
If I knew I was having a baby with multiple problems and a life of pain ahead then yes but we never do know do we?

Iceland has practically wiped out Downs by abortion but I m don’t actually agree with that at all

annsixty children get bullied for all kinds of reasons at school, if a disabled child didn't have their disability, they would probably bullied for some other reason.

I was badly bullied at school for merely having a medical problem that caused bowel problems. DH was bullied equally viciously because he was clever and wore glasses.

I think in good schools now there is less bullying. Both my children got through school without being bullied, although both had problems that could have attracted it and both DGC are happily making their way through school without being bullied.

It's so difficult and so personal annsixty some parents would be unable to cope with a child who had disabilities and that is not a criticism just a statement of fact. Even with DS there are range of problems which can occur no one would know how severely or not their baby would be affected.
I worked with adults with a learning disability and my feelings now are with hindsight. The problems arise with care in adult life, in an ideal world we could fully support people with additional needs but its far from being an ideal world sadly.

I agree entirely with you Nezumi65 The family of the person with DS now aged 40 should be looking for the right place now so they can support him/her. It causes great anxiety if left until a crisis develops.

What’s so wrong about dwarfism? I don’t see what would be so scarey it had to be avoided at all costs.

My eldest is severely disabled, we have two other children. He has certainly made life interesting. He has given his siblings a very different perspective on life (& me & my husband).

I would suggest the person with DS aged 40 should be getting a life away from his parents now. Otherwise he will be leaving home in a crisis.My son has his own life - he has severe learning disabilities (to a greater degree than most people with DS), he’s non-verbal. He lives in his own house a 5 minute drive from us with 24 hour 2:1 support. He has a good life.

We had our children relatively young and didn't have screening for abnormality with any of them. I was very clear that I wouldn't have wanted to terminate a pregnancy. My own children have chosen differently but thankfully all has been well. With the perspective of life experience would I have chosen differently? Maybe. The best we can do is go with what we feel in our heart is right. And that will be different for us all.

Ngaio1 that must have painful to post. Life is hard for parents worrying about their child's care when they are gone. ?

I have neighbours who have a Down’s son.
He is the middle of their three children and is getting on for 40.
The parents worry so much as to what will happen to him when they can no longer care for him or aren’t here.
They do not expect their other 2 to be responsible for him as they have their own lives,
It is such a sad situation and colours their life, there are thousands of families going through similar worries.

That's very difficult to answer annsixty. Sometimes, I think that life is quite hard enough without coping with extra difficulties.

But then, I believe all life is very precious.

I would have to consider the type of society a child would live in - especially if they outlive their parents and family.

Here in the UK, despite being one of the world's richest countries, provision and living conditions for those with disabilities are lacking.

No Hetty I am not saying that at all, I think you are being the Devil’s Advocate there.
I am saying if you knew almost certainly you would give birth to a child with problems which may affect their life and happiness ,would you?

annsixty, are you saying that only 'normal' people with no imperfections should be allowed to live? That discounts most of us I think!

We all take the small risk of having a child with some disabilities - or choose to not have a child.

My neighbours have a happy baby boy with Down's. He's unfortunately needed several operations already. When asked if they wanted to terminate the pregnancy, they instinctively felt that they had no right to, especially half way through. He deserved to have his life, although a different one.

I don't think I could decide against a child with Downs Syndrome, as I taught many great children with Downs.
However some matched the stereotype of delightful and friendly whilst some didn't and were very hard to handle.
But a disability which gave a child pain and a miserable life would be another consideration. Such a difficult decision.

I agree that dwarfism is a difference as opposed to a disability although it is disabling but try telling that to children feeling marginalised and bullied at school.
My GD was born with a very severe cleft I cannot start to tell you how she and we suffered and agonised over her school years, it was horrendous.

It would depend on the severity & how much pain, discomfort difficulties that the child may or may not suffer.
I think potential parents would have to know this & be guided by experts.

Agreed, wildswan16.

I have a child with a genetic disorder. I was later in life when she was born so had an amnio. Her particular problem doesn't show on an ordinary amnio. He condition is TS. She is very able but does have a lot of problems with adult living. My biggest fear is for when I am not longer here. Am doing all in my power to make sure she is responsibly cared for then. Knowing now, what I do about TS and just how bad it can be I would never willingly bring a child into this world if TS were diagnosed during pregnancy. Just could not risk it.

I certainly wouldn't consider dwarfism to be a "disability" to be concerned about. Full and active lives are led.

It is a "difference", but aren't we all different?

My niece has a syndrome as has one of her brothers in whom the symptoms are quite severe hers are less so.She decided that she wouldn’t wish to pass the gene on so has no children it’s quite sad for her. Her parents had no idea they both carried this particular gene no testing back then.