Oh FFS I am shaking... has there been a thread yet about Minette Marin's unbelievable column on babies with Down's syndrome?

[emkana]

words fail me

My brother has down's Syndrome. Having him has virtually ruined my mother's life. He is the only thing she ever talks about. She fights daily for help for support & education for him. She has no idea what will happen when he leaves school. He has severe learning difficulties and needs 24 hour support. He cannot read, write or even communicate properly. He cannot go out alone and cannot be left in the house without adult supervision. His siblings have all been affected by his existence and not in a good way. Having a child with severe special needs is a life sentence in my opinion.

Does your mother think he has ruined her life?

Everything you have written about your brother will apply to my son at his age (and now), although I can't see that he will have affected his siblings in a bad way (there's no sign of that yet and I can't imagine what will change to make it that way).

I'm sure some people look at me and think I should be utterly miserable 'having a child like that', but I'm not. I honestly believe that I am happier & more fulfilled than I would be without him.

Flocci, DS3 is a similar age and is about to start MS reception after Xmas. He has autism and is non-verbal. I would be lying if I said it isn't a truggle to come to terms with it all - it is. But gradually I have got out of the habit of comparing him with his peers (typically developing children the same age) and focused more on the progress he himself is making.

Flocci, DS3 is a similar age and is about to start MS reception after Xmas. He has autism and is non-verbal. I would be lying if I said it isn't a truggle to come to terms with it all - it is. But gradually I have got out of the habit of comparing him with his peers (typically developing children the same age) and focused more on the progress he himself is making.

I believe she does as all she ever does is complain about everything she has to do for/with him. He is 18 now and she can't even go out without a babysitter. when he is off in the school holidays he gets really bored but there is no where for him to go. He does various activities after school at the moment so she spends most evenings driving him to things. She feels resentful that she cannot have her own life because everything revolves around his needs.

Also for instance and this makes me feel awful but it is the truth I often feel uncomfortable having parties for my own kids as he comes along and can behave quite inappropriately touching young children babies etc. I would never say it in real life but I wish she had never had him.

I have a friend with a son a little older, in very good supported living. It sounds as if it's time for your brother to move on a bit. Being at home unable to access anything is not good for anyone.

We have had the same problem with school holidays, but I kicked up a big fuss with social services after this summer and they have offered me more help last half term and this xmas (dh and I are even going to have a few days with no kids at all ).

agree with jimjams - sounds like 23's Mum is spent. How old is she btw?

Unfortunately jimjams.. that is the problem - there is no where for him to move on to. they live in a London borough where funding is very tight and the only supported living for SN is in a very deprived area and he would basically be placed in the middle of a council estate and she feels unable to let that happen. The price of property is so extortionate there is no way the council can afford anything more suitable. She did tell me the other day she plans to leave the family home to adults with SN.

It is a very difficult situation to be in and i wouldn't wish it on anybody.

I did read some of your earlier posts and think your son is very lucky to have you. Unfortunately my brother was not planned and came a long time after his siblings which also made things more difficult.

I think the hardest thing for me to accept was that I was going to need outside help. But once we got that (when ds1 was almost 6) things did become easier. It;s all direct payments these days, which has its disadvantages, but does mean you can buy in help when you need it. But with those extra pair of hands all the kids can get their needs met. DS2 and DS3 can do their things, DS1 can do his. We can all sometimes get a break.

Litchick just approaching 60. It really does put a lot of pressure on the whole family but unless the council agree to fund a residential place somewhere nice (and I don;t think that will happen) then he will be at home for a very long time.

23balloons- but he doesn't have to be in supported living within the same borough. OuUrs has bugger all- crap day services in the main. DS1 will go to one of the neighbouring counties - both of which have privately run excellent provision and a chance to continue his education.

Apparently it starts being planned when ds1 is 14 - that would be for him to enter the provision between 18 and 20.

23balloons I feel for your mum

"I don;t think that will happen". It won't unless as a family you insist.

Getting the funding is definitely the hardest bit, which is why I am planning it from now- so in 10 years time they can't refuse me. Every time I deal with SS I have that goal (decent adult provision) in mind.

Thankyou, so do I but unfortunately that is her reality with a SN child and I think the original writer of the article may have experienced something similar which is why her judgements are so severe.

It is easy to have opinions and for others to agree or disagree but until you have lived with such difficulties it is hard to imagine how bad it can be. Of course everything at the end of the day is down to funding.

Jimjams she is a fighter and is trying her best right now but her argument is also what happens to the parents who don't have the ability to fight? It does often end up the ones who get a lawyer or who are really smart manage to get something but quite often the most desperate don't have a hope with the way the systems are.

Well quite and if you ever try and fight on their behalf - believe me you get nowhere.

However, in terms of adult care I met a (good) provider and he said he expected to see real changes over the next few years as parents are now demanding good provision. (and none of this inclusion, 2 people paid the minimum wage to drag clients round town every day bollocks).

Let's hope he is right. I honestly think that with good support the life of people like your brother and my son can be excellent. And in some ways because they're difficult to place you have more of a stick to beat SS with for expensive provision.

can be excellent should be - can have an excellent, rich life.

Two things that occur to me (remembering that I have Asperger syndrome, that so does my husband, that both hubby and son are also dyslexic, that I have arthritis and am often needing pain control plus a fair amount of help from others, etc).

First - is it ok to kill people because their perceived quality of life isn't so good? People have debated this one long and hard and the answer is always 'no' in a civilised society. If having a disability that may affect quality of life means people shouldn't be alive, who'd like to pick up the first shotgun or the first syringe with the lethal poison in it? Someone on this thread made a very valid point about the abject misery that many people live in through poverty, drugs, alcohol, self-harm, eating disorders, mental illness etc. Yet no-one's suggesting death for them. Death is reserved for those who are disabled. I find it interesting. And scary.

Second - if you're born with a disability, believe you me, you get used to the world being the way it is for you, and it's not that bad. The sun doesn't stop shining on us, the bird don't stop singing for us, the flowers don't stop growing for us to look at, the tv doesn't stop working because we're in the room. Our lives are much the same as yours are, with the same good things in them even if we can't be international footballers etc.

What hurts the most is ignorance and neglect and cruelty. And no 'shotgun' in the world held to the head of a person with a disability before or after birth is going to change that. Society has to change it. Society has to fight for basic human rights for each person, for basic effective pain relief, for basic help. These are not impossible dreams, they are a right. Yes, the authorities can make life hell...but...

...If a child or adult with a disability is having a dreadful and unfulfilling life, it Isn't Their Fault. It's the fault of the world around them. I don't get why people see the solution as "they should not exist". If I have a terrible journey to work every day, I don't need to be killed, I need someone to sort out the traffic problem.

Why is us not being alive the solution to any of this? Seriously?

well said Amber. The problem is rarely the person with the disbaility. Its society and lack of support and attitudes and funding. 23's mum would not be exhausted with a proper indepedant living package. Her son is not the problem. Its the lack of support.
And you don't kill people cos of lack of support.

And often it's tiny changes that make huge differences. Such as my example of being shown how to teach ds1 to understand 'walk at my speed'. This took 3 of us, one afternoon to teach but has dramatically changed the things ds1 can access, and changed the way I feel about his disability.

This debate might have moved on but the piece is not about killing people, disabled or not. She is explicit about that. Asking if it's okay to kill people is a moot question - of course it isn't. Abortion is not murder - although that seems to be the position many want to take here.

just want to re post SSB's post about misrepresentation of stats here too www.guardian.co.uk/commentisfree/2008/nov/29/downs-syndrome-bbc

God, we should just start dismissing any and all pieves about this in the nedia. They are always sloppy, misreprestented, hyperbole and nothing more. We should try not be to so gullable.

"Abortion is not murder"

That's your opinion, not a fact. Please don't state it as one.

"God, we should just start dismissing any and all pieves about this in the nedia. They are always sloppy, misreprestented, hyperbole and nothing more. We should try not be to so gullable."

Unless they appear in the Guardian, in which case of course they must be true.

This has clearly become a debate about abortion in general, with reference to shooting people and murdering them.

I saw nothing on the article by MM to suggest that she thinks any child should be shot or murdered for having a disability but many are determined to read it this way.

If you feel that abortion is the same as murdering/ shooting a child in the womb then obviously you wouldn't agree with abortion in any circumstance and tests for disabilities become irrelevant.

When you start talking about 'death' 'murder' 'shotguns' you've moved into pro life territory.