Hello

[girl racer]

Hi I was just looking through some recent posts on here and saw a girl post to offer support from a sibling point of view. I wondered if anyone had any questions for me...

I'm 21 and a wheelchair user I need a carer most of the day as I am not able to do a lot for myself. I have a lot of problems trying to get my upper limbs to do as they are told! It's like I want to do something and they go in opposite direction sometimes. I have increased pain in my extremities (hands and feet) yet I cannot feel anything in them like temperature or pressure, which makes it difficult to hold things in my hands.

Unfortunately my parents never got used to the idea of having a disabled daughter which means I now rely on carers.

However, I just wanted to say that despite my "disability" (I've never really like that word!) I live a relatively "normal" life. I go to college and meet up with friends. I live on my own and have carers in during the day but am left alone at night. I go clubbing (and drink drive in my wheelchair)

I guess I am one of the lucky ones as I wasn't born with my condition. I had most of my childhood being able bodied and started to get ill at the age of 14. Since then I've been getting progressively worse.

My mum once hinted that if I had been born disabled there would've been no way she'd have been strong enough to keep me. She's never been a particularly strong person. I know it must be awfully hard for parents of sick or disabled children but its also hard for a child (or teenager) to feel like a massive burden on their parents. Since I have been settled in my own place and with carers and friends who actually want to support and care for me there has been a massive change not just emotionally but also physically. I feel more positive and so am more proactive about trying to gain more independence and work hard with physiotherapy.

Last year I had a massive relapse and I was scared I would end up in residential care again but I was determine to get back home. I think the thing that keeps me going now is not the treatments or medication its the love and support I get from people around me. I don't feel like a burden anymore and its had a real positive effect on my health.

If anyone has any questions about anything then I'd be more than happy to answer them. I just thought maybe some parents might like to talk to someone with a disability. I know the word disability is a very broad term and there are no two people the same but if I can help in anyway I'd be happy to

 

[kelzyboo]

Hi Girl racer, although our situations are different i didnt want to read and run!!

I am a parent to a wonderful 5 year old girl who is on the verge of a diagnosis of ASD (we think Aspergers but still unsure) and i guess i am on this forum for some support as i am still in shock really and struggling to cope with her outbursts. I worry a lot about how her future will be affected but reading your story has helped a lot, i love that you are able to focus on your many abilities instead of things that are difficult, this is how i am trying to deal with my daughters ASD, i am thanking my lucky stars for everything she does well and the things she finds hard...well we will learn to overcome them together!

I am sorry to hear that your parents had a hard time coping with things, it is very hard to deal with any disability (i am not keen on the word either!) from a parents perspective. I myself have cried for hours on end because the life i expected, the life i wanted for my child may not be possible. I never wanted her to struggle with anything and i find it hard to accept that she may do at some point in her life, but for now she is a wonderful, happy little girl and i am getting through by focusing on that.

It sounds like you are doing very well and living your life to the absolute full and thats how it should be, i will always tell my daughter that what she can't do doesn't matter, it's what she can do that counts.

Sorry if ive talked too much (i tend to do that!), i just wanted to say hi, you sound like a very strong lady and i wish you all the best for the future x