Daily Mail article about having a disabled child.

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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.

Oops should have previewed. Imagine the bits between the *s as bold or change them to ". Thank you

Just about to read the article, but I agree with your sentiments.
There are a lot of people out there that would love to have a family life like mine.
How many children are brought up in a home where they are loved and adored for who they are and not who people think they ought to be?
Yes family life has had to have a few tweaks - but we are a family. As for being miserable? No-one has ever called me that, evil - yes, miserable - no!

Handicapped? Get a grip no one uses that word anymore.......sigh*

Just a word of warning, don't read that article if you are feeling in any way fragile!

I don't normally click on DM links, so god knows why i clicked on that one. I have been feeling shit enough lately, without reading that.

From start to end this article just grated on me. I HATE the use of the word handicap so I suppose I got off to a bad start. My daughter has a syndrome caused by mutated genes and although things are tough I personally would never want to change her - that's who my daughter is and I've never known her any other way so I feel the same as the other family. And calling her grown up daughter a drama queen seemed a little unfair to me (maybe Im reading into that too much though)

Blimey! She was having a bad day when she wrote that.
My son has autism, learning difficulties & cerebral palsy. I dont recognise those feelings. Yes there is the odd occasion when i may feel a tiny part of what she is expressing but really, its not how i feel.I would still however remove my sons disaility & 'cure' him givent he chance as I believe he is more than the sum of his disabilties & i would love him to have a life that is easier.

Well yes, the word 'handicapped' got my hackles up too but I was trying very hard not to be nitpicky so decided to ignore .

;)

She is entitled to her opinion but she is assuming a lot to talk of behalf of everyone.That is not how I feel. My son is a blessing and because of him I do look at the world differently and have meet people I would never have come into contact with otherwise.

Do I wish he didn't have autism and learing difficulties - of course I do but he is who he is.

This is very interesting. My DM recently said that she wouldn't have changed my sibling's disability as it was very much a part of who they were. However, I know that my other siblings and I felt very much part of a "disabled family" (hate the word handicapped) and I'm sure my parents would be heartbroken if they realised the negative impact that it had on our childhood, and, to be honest, still has.

AgentP How would you have liked your parents to do things differently? It's a genuine question. My 8 year old's life is impacted by his younger sibling's difficulties and I have been thinking a lot about him lately.

Learning, I'm not sure if there's anything they could have done differently, TBH. Its just the whole "package" that comes with a disabled child, similar to the article above. We were embarrassed to bring out friends home in case my sibling would strip or shout and scream (this was back in the 70s when segregation was very much the rule in education), and the few family outings we did go on were either cancelled at the last minute because sibling refused to go, or had a tantrum, or were stressful waiting for it to happen.

My parents spent my childhood telling me I had to make allowances - which, now I'm an adult, I agree with - and that felt quite crap. It felt like sibling was favourite and the priority and our needs came way below. (God, I sound like such a brat). I left home at 16, as did another sibling.

Now, disabled sibling is ageing and in residential care, but my parents are old too. I have seen a great opportunity overseas (my own DC are about to go to uni) and I don't feel I can take it. When my parents die, or lose capacity, all my sibling's welfare and financial responsibilities fall to me.

Actually, what would have been good was some overnight respite so that the rest of us could have spent time with our parents in "relaxed" mode. I don't think that ever happened. Every night there was bedtime stress

Yes it made me think about the sibling experience too.

My view on the article is that she is allowed to have her say, and it does no-one any favours if only the positive sides of living with a child's disability are told. It is @xxing hard work bringing up a severely disabled child, however we brave mums/dads come to "normalise" it.

My DH has said he wouldn't take the autism away, as it is who DS is, but my view is "of course i would bloody take it away if I could, and so would DS himself if he could understand he question". There so so much he is going to miss in this life.

BUT I do not sit around feeling sad at all anymore, and one thing I m absolutely determined on is that we will take DS out and about, to cinema, restaurants etc, without one tiny iota of shame. Mainstream inclusion has definitely helped here. The more that autism is seen, the more it may become part of mainstream life. And yes when we invite kids back to play dates, they stare and goggle at DS at first, but soon get used to it, realise he's no threat and run off and play their on games.

I would not change ds1autism, but like this lady I would give my life to remove ds2 autism. With ds2 the worry gets bigger each year esp when he became too big to scoop up. I am the same parent but how the autism presents changes your perspective.

I think it is a rebuttal article so she is emphasing all the ways in which she differs from Nigel Lawson. It is therefore obviouslytressing all the negative aspects. I suspect that Nigel Lawsons upbeat 'I wouldn't change a thing' would have been equally irritating.
It is impossible for me to explain how I feel about DS to people who don't live with disability (or actually some who do) because they don't understand that it can be thoroughly wonderful and heartbreakingly bleak at the same time.

I would take DS2s autim away in a heartbeat. He is gorgeous and lovely but when I die he will not understand where I have gone. His whole life will depend upon the kindness of those charged to care got him.
Of course I would take it away

well as someone with scizoaffective/type1 bipolar from a child and a dd with autisim no i wouldn't take the autisim or my illness away. while i take med for my illness it is a big part of who i am and if it was taken i wouldn't be the same so as much pain as its caused id keep it. I feel the same way about dd autisim and imagine if she could tell me she would feel the same sure there are negatives but there are positives too you take the good with the bad sorry its just how i feel.

there are always going to be disabled kids and disabled families. fact. if not that then other challenges, illness accident...how you deal with those is up to you.... the DM author goes for the "poor me" line... could things have been different - maybe - more respite help etc. I had a very disabled sibling, he went to residential weekly boarding from age 12 then moved away full time . he ahd epilepsy and challenging behaviour. i dont recall losing out too much - we were a large out-of-the ordinary family but we had days out holidays etc. always had family meals daily which were chatty affairs...

now i have my ds 16 with ASd, SLD etc. have worked to get away from home respite since he was ten and that has made a huge difference to me and his siblings.

but is ia about attitude - yes it can be crap but there are options out there - yes you have to fight for them. but same as how one approaches other issues in life.

for someone to write my life is ruined because of xxx happening my family is ruined - well that can be more about attitude cant it? sh&t happens in life... how you deal with it is up to you - more respite earlier might have helped the author, for sure... life dealt her a blow. as it has done to many of us.

how far did she go to request help earlier, get the residential place earlier? we dont know... how much was she willing to put the siblings needs first ie by using services which were available? (and they were available to my parents in the 1970s - my brother was around when i was small then gone...even if you consider that to be their failure...) (and risk being considered a carer-abandoner)

i have seen people write on forums how they are stuggling but "would never consider residential respite". why???? martyrdom doesnt win prizes. and author maybe wanted to do it all herself to prove something until finally reailsing daughter was better off in residential? we dont know. to me she comes across as "poor me".

I do sometimes think that I don't really give the whole true picture of how my dc disability has affected our family life because I don't want people to pity us. Our lives aren't awful but there are times when they are harder than I would have ever expected and the future is a worry I can't contemplate without being depressed. I would take the autism away in a heart beat. Whilst I love my dc and have undoubtedly become a different, more compassionate person because of their difficulties I still wish I could have foregone this experience. I have a lot of empathy for what is said in this article. I know not everyone feels this way it it is a view that isn't often said out loud as it isn't popular or positive. That doesn't mean people don't feel it to some degree at different points. I also think I feel differently now to the way I did when my eldest was at his most challenging. At that time I was really at the end of my tether and there was very little to feel positive about. I think it can be helpful if people are frank about the awful feelings they have as it takes the stigma of not being an accepting saint away!

Cestlavie, they were offered a place at a residential special school which they turned down because it was nowhere near their home, so they fought to send her to the local primary where she was bullied mercilessly as were her siblings for defending her. The residential care that she attends now is for adults. Tbh I can't understand why they didn't accept the help that was offered in the form of the SN boarding school if having her at home was such a burden. I don't mean that nastily, the way she was treated at the primary school it seems she was as miserable as the rest of the family and it would have been the best option all round. She would have come home for holidays surely?

I think the author has been sleep deprived and ostracised for years and after a lifetime of trying to do her best with little information to go on has suddenly realised after a few months normality that it could have all been different.

I think a great deal of coping mechanism stems from the support group you have available to you. We are very lucky to have access to online support and resources so the opportunity is now readily available to our generation if we want to take it. Even 10 years ago it was much harder to get access to professional knowledge and locality and immediate contacts played a big part, now you can pretty much seek out your own tailor made help to an extent or at least find out all of what is available to you.

I only manage my dcs with a strict timetable and lots of help, I love them and life but it is not normal or easy and do envy those whose kids sleep at night, go to school and then take gap years and produce grandkids. I want that, I don't have that, I suck it up and make the most of it.

BUT

There was about six months last year when I lost my care plan and was without help and life was impossible. I was unrecognisable; distraught, ill, exhausted, I lost all ability to communicate my needs or those of my family, I feared the worst and saw no light at the end of a very dark tunnel. I can tell you from experience that even a little stress added to sleep deprivation is enough to upset the balance of brain chemistry sufficiently to render you ineffective as a carer and advocate. Just being that tired can make getting from one hour to the next a marathon and I think the author got stuck in that very bad place and it may take her another year or two of respite and therapy to get to the point of "whatever will be, will be".

Services (and attitudes) are changing but the level of stress placed by the acquisition process on families who need society's help most means that those most in need go without because they simply can't manage the extra stress imposed by the bureaucracy.

I really feel for the author and hope she finds peace now her life is starting to make some sense and that she can build bridges with her other children and herself and start living in the moment a little.

Whenever I have an 'if only' moment, i vent or find a story like the butterfly effect so that I can gain perspective and stay grounded. I wonder what my outlook will be in 20 years?