Lovely Indie article- Profoundly disabled we wouldn't have her any other way

[saintlydamemrsturnip]

Article here. The usual negative comments underneath but I agree with lots of it. I do feel finding out about the world of severe disability was like uncovering a secret. Made my day. Enjoy.

that was so lovely, for once I read with no tears, she sums it up so well,
I think everyone should read it.
(I skipped the comments)

She's great isn't she? Such a positive outlook. And her DD is lovely.

I was just saying to DD2's resource teacher this morning how it's quite nice having 1 child who doesn't try to manipulate me or create power struggles :o and the spd makes her extra cuddly!

That's a great article. What a lovely family. (I skipped the comments too)

Yes my severely autistic son is extra cuddly as well - not many 11 year olds still want to cuddle their mum. He fights with his 5 year old brother for my lap :o

I always like his complete lack of materialism at xmas as well. His brothers and coming out with long lists and he's happy to go out for a walk and have a big slap up meal.

I struggled with this article. I really liked the way she argues that children with severe disabilities are fabulous (of course they are), and life is not all joyless tragedy. However, I was left wondering whether this woman is especially lucky in having a child who is passive, happy, who sleeps and who does not have a very high level of medical need.

I think anyone who lives with a severely disabled child who is very challenging, who does not sleep or who has severe medical needs, may not be able to be quite so positive. She may feel also less overwhelmingly positive when her daughter is too big to lift and she cannot go anywhere unless there is wheelchair access.

Sorry to bring a note of negativity but I cannot say, hand on heart, that I wouldn't have it any other way.

I do know what you mean but I tend to think it's difficult to present the complexity of severe disability. People ime recognise the difficult side but find it harder to understand the positive side or the value severe disability can bring. Of course it's easier to recognise the value in great friendships, altered perspectives, different expectations when you are getting sleep, can work if you want to and are having regular breaks!

I don't know, my dd has very severe physical and mental disabilities, along side high medical needs and the article summed up exactly how I feel about her. My dd doesn't sleep much and alhough it's exhausting I get to hold her and cuddle her (she is very life-limited and another mum once told me to make the most of every opportunity she won't be here for ever), the vast majority of her woes are solved by a cuddle and a raspberry on her cheek. She's made me a better person and enriched my life no end. I do long for a break sometimes and I wish the struggles for adequate statements/equipment/respite weren't quite so immense though.

HUGE thank you to saintly for going to the trouble of posting this article.It made my day.Dont read the comments underneath,they brought me down with a jolt.However,I do agree with a lot of what some of the negative comments said.I would not CHOOSE to have my ds so severely physically and mentally disabled.He,unlike,Clementine,can be extremely aggressive and violent.Our lives are definatly restricted and he has affected all our health.But God,do I love him.Its like a love story which is actually getting better.I do work ft,and shaving his face in the morning and making him clean and presentable brings him and me great joy.He enjoys his Life so much,and we enjoy him.I think this is something that other parents found challenging when he was little,and still do.I think they WANTED us to be upset because that could make them feel smugger about their own situation.There isn`t any pressure on him to succeed,in fact he is in his 20s now and amazingly he is still developing skills.Incidentally now he is an adult I am a member of a support group for parents of severely mentally and physically disabled ADULTS.I am struck by the parents positivity,energy and humour.These parents are in their 70s,80s and I believe one lady is in her 90s.It is not always true that things get worse as your child grows.In my case it got better.I am still taking things day by day,and cannot say hand on heart that I want to look after my boy indefinatly.I do want a LIFE,but I have to say he has added rather than taken from my Life thus far.

d is 15, so I face all the access stuff and the hoisting(not lack of sleep though thanks to melatonin) and dd is not passive.
but I loved the positive spin.
It summed up a lot of how I feel about dd, I think too often the papers are full of doom and gloom, it is refreshing for once to read a lovely positive story.
I was also amazed that she got there so early.
(child so young)

oh and should add, I think the writer has just accepted that nothing she can do will change things, so has accepted it the way it is.

Yes 2shoes it is a fabulous article,and I agree with you about your comment re her getting there so early.How lovely to read that they bonded quickly.I wonder what factors helped.
I am intrigued.For myself I felt cheated and disappointed and bitter.Incidently I did meet Ivan Cameron and his parents and I observed that they seemed very besotted with little Ivan,bless.He was gorgeous and gazing at everything.I do know a couple who have a son similar to Clementine and they are not going to have any more children.They are so infatuated with their son,they really dote on him and seem so happy.It really is lovely and inspires me.I think the message is clear that they are really happy with their child and to hell with the rest of the world!