Daily Mail article about having a disabled child.

[Pixel]

here

Obviously I have huge sympathy with the problems this family have faced over the years, can recognise the little sadnesses that come with seeing your child missing out socially and know only too well the problems of finances, lack of sleep, coping with behaviour, making time for siblings etc, and especially worries about the future. I do get it!
However I feel quite about the following:- I must confess that I am tired of hearing about devoted parents who say that seeing the world through a handicapped child?s eyes is a blessing.
Please forgive me for sounding so cynical, but I?m convinced that parents say this only because they need to find something positive in their difficult, if not miserable, situations. Also Every family with a handicapped child becomes a handicapped family. That is a fact.

This doesn't feel like my family at all, there are problems but we don't walk around constantly in a big cloud of misery, we have fun and laugh together like anybody else. I rather resent this lady speaking for all of us, by stating her opinion as a fact she is reinforcing most peoples' view that having a disabled child can never be anything but Hell on Earth, when actually I would never want to be without my ds and I don't want to be pitied for being his mum.

when I saw the the post I thoughr How dare you reduce "handicapped" people this way,
I have thought long and hard about this, For us our adopted 8 DC's all with SN's have been a total joy to us but how about the birthparents I am sure they would have rather their child did not have a disability.
But for us if our beautiful DC's would not be with us if their parents had our views
BTW the DM to me ws out of order making our children rubbish. They have no idea, our eldest 32yrs Downs deaf epilepsy is a joy to all

The word handicapped bugs the life out of me but I suspect 34yrs ago that would have been the term used which is probably why this woman uses this term.

I can really judge her as I dont have a child so severe and I am not in a position to make such a suggestion as to how I would feel. The woman adopted her and she didnt throw her back that in itself shows how much she loves her.

I think its just a truthful portrayal of how their lives were or are and yes it is very sad and suspect this write up is because its just dawned on her what could have been and to let others know that it isnt always roses and sunshine.

It does bug me though with the families who have a handicapped child become a handicapped family and states it as fact.

She doesn't have the right to quote how everyone supposedly lives as she cannot prove this as fact.

A household could all be NT and have a raving hormonal teenager storming in and out of the house causing havoc from 14yrs up and have it cause mayhem to the family household.

That bit bugs me as she has seemingly tried to talk on others behalf which her life isnt necessarily everyone elses.

Personally I would rather change the NT worlds outlook on DS and others than change DS himself. Also change the red tape and the fight for support for our children but thats me looking at my son x He makes me laugh and when he is older he will still make me laugh but I am closer to his "kind" and we both have a wierd outlook on life than most anyway lol. He has also made me a stronger person and for that I am thankful. Will he survive without me? yes either on his own or in residential care should things get worse but he will survive. I dont look on his life as a living death like this woman. DS is living his life and loving it from his side of the fence and I like being there with him.

That was a heavy write up to sleep on.......

cant judge her it is meant to say.

Agree with pag. Also only skim read as an on phone but the idea of bringing up a severely autistic child in the 70's fills me with horror - it must have been so isolating. Children with severe autism weren't even entitled to an education then.
I am often hugely grateful that I started to be concerned in 2000, post Internet. So much RL support would never have been available without the Internet - never mind the online stuff.

People can be vile now when you go out with a severely autistic child god knows how awful the 1970's/80's crowd were.

We do tend to keep ds1 away from mass gatherings of ds2 and ds3's friends now - in part because of the potential for ds2 and ds3 to be teased/bullied (has only happened once so far).

Ok read it now. I just feel sad for her tbh that she doesn't realise that it was lack of support that contributed to making their lives so miserable. Anyone without the support they need (whether 'handicapped' or not) idls going to struggle.

Ds1's is affected to a greater degree than her dd by his ''handicap" and I suspect she would struggle to understand that he has a good life. But currently midteens he does. That doesn't mean I wouldn't get rid of his disabitlity if I could, but it does mean I realised years ago his life was always going to be a severely autistic one so we may as well do our best to make it as full and rewarding as possible.

I don't agree with her point of view at all. But she obviously did not have access to all the resources that I had when my dd was diagnosed with autism. I was able to make contacts and get her onto an ABA programme, claim DLA and carer's allowance, all of which really help her quality of life. The most useful resource I had was the SN board on mumsnet - I learned so much here.

I agree that she shouldn't feel she speaks for everyone. The article makes her sound like a very negative person. IMO, if you have a child with severe SEN then it's really important to come to terms with the fact that they are never going to be NT or live like a NT person, but that they can still have happy lives and so can you. Of course we all have struggles, but doesn't everyone?

Thank you for the warning not to click on it if feeing "fragile" at the moment. I'll admit that lately I've been swinging wildly from okay and fighting to feeling utterly alone and frustrated. The lack of sleep and the overabundance of stress, combined with a ridiculously absent support network, has really taken its toll.

I can honestly say there are times when I just cannot cope and feel very negative. Looking at it from when I'm a bit more myself, I can barely recognise myself when I'm like that. Whether or not I want to admit it, DS2's disabilities DO impact our lives and will most likely continue to do so for the rest of his life. I love him, but that doesn't mean I don't get absolutely mentally, physically, and emotionally exhausted caring for him. Sometimes we get into a bad place and it's hard to pull out of it. We've all been there.

I imagine there are resources locally that would be helpful. I honestly cannot muster the strength or get the time to access it. I've gone in regarding possible depression and was told "you'll be fine - that's what women do - they cope." It's only taken me 2 years to get DH lined up with appropriate counselling for his own depression, and STILL we're waiting for it to start. I've accepted that DS2 will never be NT... but I can't force DH to accept it, and I can't force him to pull himself together and get past it.

I would imagine if someone was talking to me during a more "down" time, then they would think I was very negative. I'm actually a fairly positive person, but the combination of everything has really dragged me down. I hate how I've become sometimes. I can't be the only person that feels this way... obviously the author of the article (based on people's comments) does...

Lots of things about this article made me feel uncomfortable, but then I read Nigel Lawson's article first and that made me feel uncomfortable, too, in the same way, but for opposite reasons. Basically it is very hard to write this kind of Big Statement without giving the impression that you are claiming to speak for all families, all parents- and Lawson certainly wasn't speaking for me either! I often feel those MN posters who claim that there is no such thing as disability, only societal shortcomings, are doing the same thing, too: claiming to speak for everybody when they're actually just extrapolating from their own experience.

Dd's disability causes her chronic pain and frequent illness and has already led her to attempt suicide once. Not because anyone was nasty or unsupportive to her, but because she couldn't face a life of constant frustration and pain. There is simply no way you could change the NT world that would make pain into a good thing.

Of course I'd do anything I could to take her disability away. I don't suppose most of you would sit calmly by if your child broke a leg and refuse to have it set and treated because "this is who you are now, you're a person with a broken leg and I must accept you as a person". If dd's disability could be treated as easily as a broken leg, she would be exactly the same person, just without the fear and pain.

But I fully understand that other conditions are different, other children are different, other families are different.

I think the moral is nobody can speak for anybody else. All we can do is listen.

My son 32 years Down syndrome now deaf partially sighted and (the worst) epilepsy
DLA was in existence then from 2 years There were groups there for DC's with disability and other parents were terrific support so no it was not that bad. I now have a 14 year old deafblind CP epilepsy things honestly may be different but no better.

And yet my son has down syndrome and his life is so debilitated and isolated. Because of that it leads my life as his mother just as isolated and debilitated. As for siblings, they are so neglected and let down and this is all now, not 34 years in the making.

www.guardian.co.uk/lifeandstyle/2012/dec/01/cerebral-palsy-doctor-victoria-webster and www.guardian.co.uk/society/2012/nov/30/grow-up-with-disabled-sibling
These two articles might interest you.

The bit about "seeing the world through the eyes of handicapped child" I can probably relate to! My dd has an awful time but smiles through everything she only sees
The good in everyone and says hello/ goodbye and blows a kiss to those who stare at her! I never quite know what this comment means but to me even though dd's life is tough she sees it as normal and fun and happy and full of attention (which she live as she is a major drama queen)