[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Viewing your caree - Page 2 - Carers UK Forum

Viewing your caree

Share information, support and advice on all aspects of caring.
I look t Sarah and dont see the Downs Syndrome, to me she just looks like Sarah and if someone says about her having Downs I feel shocked if that makes sense Image Image I dont even see Downs in other people now for instance I can look at a photo of Lazydaisys son Ben who also has Downs but to me he just looks like a good looking young guy, I must look beyond the Downs.
I feel just the same Nilla.
I see Sarah as a beautiful young lady.
When I look at Ben,I see a lovely young man who wishes that everyone in the world would be kind to each other and not nasty. I have more issues with his diabetes than his Downs Syndrome anyway.
I look t Sarah and dont see the Downs Syndrome, to me she just looks like Sarah and if someone says about her having Downs I feel shocked if that makes sense Image Image .
Yes that makes perfect sense. Image
On the occasions when people have asked what's "wrong" with Grace, our reactions have been along the lines of "Nothing's wrong. She's fine. How are you?"
I really liked this from BB
They're just there, effecting our lives, not defining them.
Glad I could help Image
HI Sparkie,
I asked the question because there are never many posts in the Specific disabilities section (and more relevantly for me in the asd section) and I wanted to know if that was because not many carees had asd. We all share similiar issues in relation to caring, but ASD brings it's own set of challenges to a family and I am interested in the experiences of other folks affected by it, especially once the caree reaches adulthood.

First and foremost S is a lovely young man, he is kind, fun-loving and a fabulous cook. His autism is very much part of him and if his asd needs are not addressed (and respected) then he cannot function. His autism affects him in both a positive and a negative way. S was in my class many moons ago and I fell in love with him autism and all and that is how he came into my life.

Melly1
On the occasions when people have asked what's "wrong" with Grace, our reactions have been along the lines of "Nothing's wrong. She's fine. How are you?"
Bertiebear,

S has a fab T shirt it says,

"It's not me,
It's you!!"

I think that sums it up very well.

Melly1
To me, my beautiful Girls are them. They're perfect.

Yes, the behavioural difficulties associated with my Youngest Daughter's condition has indirectly led me to a nervous breakdown but I would NEVER say it was her that caused it. What's more, anyone who says so would be met with a stern telling off from me. It was more the pressures and skullduggery from external sources who claim to be professionals but seem to have very little understanding of ASDs that led to the breakdown. And slowly, I'm coming back to life.

There are plenty of occasions where the behaviours dominate (from both my Girls). We have to walk on eggshells each night, second-guess moods, worry about everything, lie awake feeling sick with anxiety at night over what's going to happen to the Girls when I'm gone, wonder when Youngest is ever going to sleep through the night, trace where the urine smells are coming from in Youngest's room, etc. Going anywhere still needs military precision planning.

I'm immune to the odd looks we get from people. When Eldest (who looks 17 but is 15) behaves like a 12yr old in public when she becomes confused by something we're trying to explain to her. When Youngest shouts 'I hate you, you're the worst mother in the world' after me in the street because I've asked her if she's OK.

Sometimes, it hurts when Youngest hugs everyone else except me. Sometimes, it hurts when Youngest tells me I don't exist in her world, that I'm a robot. But I know that I'm the one she feels safest being that way with, that she has so much pressure on her to conform in the outside world (which she tries so hard to do) that I'm the only one she CAN be herself with.

Sometimes, it hurts when I can't display how unwell I feel because I know Eldest Daughter can't cope with anyone else being ill. Sometimes, it hurts so much - worrying sick about her. Sometimes, I struggle when I try not to cry about, say, memories of my late sister because I know Eldest will storm off in a huff, shouting 'don't you start b*oody crying' because she finds emotions to varying degrees difficult to deal with.

I grimace and seethe when someone says 'oh, it's such a shame both your daughters are autistic, don't you want to cure them'. I try to remember that they probably have little knowledge of the condition, try not to look at the comments as blinkered. But it's hard not to bite back, especially if they say it in front of my Daughters. My Daughters are beautiful, they're human beings, they have feelings too Image

There are positives though. When times are tough, you can forget those, but they're there. Eldest's recent decision to start sorting out her own school uniform on a Sunday evening.. that's a positive. Eldest successfully writing the lyrics to a song for her Performance tomorrow, even though she finds using her imagination an anxiety-ridden challenge. That's an achievement. Image Youngest performing so, so well in her Leaver's Performance tonight and holding it together throughout the show. That's an achievement. Facing up to the boy who has tormented her at school for the best part of 2-3yrs but doing so with dignity.. that's an astonishing achievement. Tonight is a quiet night and they're both upstairs by 10pm - now that's a REAL achievement Image

Each day is different and bring with them different challenges. We just deal with them when they arise.

My Daughters are my Daughters and I love them.

Sezzie.
Melly I agree each part of the ASD has to be addessed and as it is as individual to the child as to what makes up their ASD its very challanging. My son has a t-shirt it reads...I have aspergers what's your excuse Image
It was more the pressures and skullduggery from external sources who claim to be professionals but seem to have very little understanding of ASDs
oh I soooooooooooooo know where you are coming from with that, still happening with me now after 14 years.
My Daughters are my Daughters and I love them.
Thats exactly how I feel about my boys.
This is not an easy question for me to answer but it is a thought provoking question.

When my husband was 28 he suffered two brain haemorrhages. Subsequent radiotherapy treatment caused further damage and he was left not only with physical disabilities but also impaired cognitive function including amnesia.

I was with my husband for ten years before and we have been together for 21 years since.

My husband both is and is not the same person he was pre brain damage. There are parts of his personality that i feel i lost and parts i have not lost. There are also parts of his personality now, that may well be the result of changes caused by his brain damage, that i also love and respect.

I loved my husband deeply pre his brain damage ( and if i let myself think about it i still miss him) but i also love him deeply now. There is no doubt though that his disabilities have changed our relationship profoundly and changed not only the way i 'view' him but also how he 'views' me.

Before my husband was brain damaged he was one of the most independent people i have ever met (possibley because he was sent to boarding school from the age of 8!). Our relationship was very much one of partners and i viewed him as my partner. Someone who i shared problems and decisions with.Someone who i could bounce ideas off. Someone who gave me support when i needed support and who to be honest then asked for very little emotional or physical support from me.

Now i am his protector. I view myself as his protector and he views me as his protector. I make all our decisions (other than the day to day stuff like what do you want for breakfast!) and if there are problems in either of our lives to solve they are mine to solve. His body has become an extension of mine to care for. I decide when his hair needs cutting, i bathe him, i cut his nails, i choose what he wears every day. He even 'borrows' my memory (mainly to remember boring cricket scores!) and because his memory of events pre his brain damage has not been impaired our shared knowledge of his past comforts him and binds us even more closely together.

His sense of humour still makes me laugh. He is incredibly brave and complains so rarely that i forget how much he has to deal with on a day to day basis because of his disabilities. I respect him hugely for how he has coped with what has happened. He is also very loving towards me, he makes me feel special and cherished, so he is by no means just a 'taker' in our relationship. I 'take' from him too.

In summary, I think that the disabilties have profoundly affected how my husband and i 'view' each other but there is no less love and possibly even more respect on both sides Image
Belle what you wrote was lovely and it made me choke.

My husband is my husband and I love him to bits his health issues are a multi headed monster that blights the life of everyone in this family. Sometimes I can't help but resent the fact that some of them he brought upon him self and consequently us by his own actions. (Does that make me mean?)