Thursday, July 7, 2011

Thoughts for Thursday...what if you were disabled?


On my Tray of Bliss today is a vow to help my disabled son find some new friends.

Mr A has Cerebral Palsy. He's had it from birth and this means that he is totally dependent upon others for the necessities of life. He can't eat, be toileted, stand, sit or roll over in bed without intervention.

That said, we've always done our darndest to make his life as 'ordinary' as possible. He communicates well which is a true blessing, so can voice his needs and wants clearly.

He's now 20 years old and after many, many years of battles with bureaucrats who would have things otherwise, we've managed to negotiate an independent living situation for him, with government funds to pay carers to look after him.

He now has his own unit, just like other 20 year old blokes. He watches sport, goes shopping and to the movies, hangs out with his beloved greyhound, and makes his own life decisions (with some help from Mum and Dad where necessary).

The only thing that remains difficult for him is socialising and maintaining friendships.

Mr A is not defined by his wheelchair. He is a vital and witty young man. He is passionate about sport and Japanese Anime, and can hold his own in any conversation. He likes women too, and is slowly learning that it's okay to have a blokey chat with his brothers about the cute girls on TV. Given his lack of life experience in these things, that's a big deal! On average, he's more 16 than 20 in many ways, and we'd like to see that change for the better.

The friends that he had as school are either off doing their own thing, or in the case of other disabled students, pursuing other options (read that as staying home with a day trip to Day Respite twice a week). The role of parents and siblings in this cannot be underestimated and many families don't think much beyond 'school' when it comes to their disabled family member. It's just all too hard.

His older brothers are great at doing their bit and frequently whisk him off to the local sports club for a wowser of an afternoon watching the footy or cricket and having a few Lemonades.

But he wants to hang out with 'friends' too. Alas there are no pubs or clubs where he could feel safe, and entertainment aimed at the disabled is a bit thin on the ground. As much as mainstreaming people with a disability is a wonderful thing, it does mean that they are thrown into situations and locations that aren't entirely safe or comfortable. He no more wants to frequent the Irish Pub down the road, than fly to the moon, and thank the stars for that.

He'd also love to meet some members of the opposite sex, but where do the disabled do that??? How do you put your vulnerable disabled adult 'child' into a situation where they can meet others LIKE THEMSELVES. Also, tell me please, why is it assumed that people in wheelchairs all want to do the same thing? People who get around in a wheelchair, have interests as diverse as any other group. My son has no interest in going to lunch at a tourist spot followed by a flutter on the Pokies, and yet that is what's on offer if you're not very mobile.

Clearly, as far as we've come as a society, we've still got a way to go when it comes to catering for the differntly abled in our society.

If all you know of people in wheelchairs, is the disabled sign on the parking spots at the shopping centre, then maybe it's time to change that. You could make a difference in a disabled persons' life.

Volunteer somewhere, contact your local church to see if they have anyone in their community who could do with a friend, lobby your local politician to improve the lives of the disabled. It's not generally seen as an 'election issue' so the disabled don't get the share of public monies that they really should. Let's make it one.

I'd love to see Mr A with an active social life with great friends and good times. I'm just at an absolute loss as to how to make that happen.

What if you were disabled? It can happen to anyone through accident or injury. What would you need to make your life fulfilled? How would you do it, and who would help you?

I'll get there. I just have to gear up for (yet another) battle. It's all good. That's what we Mums do best.

What's on your Tray of Bliss today?

9 comments:

  1. Hi
    I have just found your blog and I agree with all you have said. My stepson is severely Autistic. He is 11 years old and goes to a special school. He is non verbal, communication is a nightmare, he is also not toilet trained and basically needs 24/7 care to keep himself safe (he has escaped the house at early hours in the morning before). I too, am worried about what the future holds for him once his school life is over. I love that your son has a greyhound (we want to become greyhound fosterers soon). I look forward to exploring your blog further.

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  3. First post removed typos.

    Honey this post broke my heart and made me sob big sploshy tears. Friends are so very important at Master A's age age. We have two almost 18 years olds so I should know. Whilst blubbering into tissues I had a lightening flash moment. I immediately telephoned my gorgeous Brenton who was at his best mates house. You see Brenton and his best mate Sam have loads in common with your Master A. Sam is studying horticulture? at our local Tafe (wants to be a landscape designer) and both Sam and Brenton are into Japanese Anime BIGTIME and of course love their sports and are both fond of girls ;] Brenton needed no convincing and offered (without my prompting) that he and Sam would be happy to pay A a visit from time to time...take their playstation/xbox along if A is able? He said he could take along some anime to watch with him or loan A some of his monster dvd collection. He also invited A (if he can get there) to come along and watch him and Sam play touch footy on Monday nights.

    The offers there lovely. You would love Brenton cos he takes after me ;]

    xxx

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  4. Beyond answering that one at the mo Kimmie. Too many big sploshy tears at this end. I'll get back to you soon...xxxxxxxxxxx

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  5. This post was so wonderful and reading the comments only makes me realise what a supportive and powerful forum blogging is. I am certain that your capable and loving ways will not only help your son but ensure that his life is secure and filled with great happiness. You are so right, we must all do more to help..xv

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  6. OurGangof7, I have many tales to share so stay tuned. Kimmie, I cannot thank you enough for your interest and your sons kind offer and will be in touch privately. Please note all, that whilst Kimmie and I are 'friends', we have actually never met in person, and our friendship and apparent closemess are purely through a connection made through the world wide web. So Vicki, I couldn't agree more. What a wonderful powerful thing blogging and forums are when they allow us to connect with people who would never otherwise cross our paths. What a joy to be able to communicate with you all. Thanks so much for your interest and comments.

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  7. That is a wonderful offer by Kimmie's son and his mate. It honestly restores my faith in teenagers these days!!
    You are right,, blogging is amazing and I for one,spend way too much time reading blogs lol. I think I spend too much time reading others and not doing much of the inputting in my own, but oh well, one day my blog will bloom!

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  8. Hi Mimi, One of my dearest friends has a son with Cerebral Palsy, she has taken him to this woman who does Bowen, she is fantastic , he is having such wonderful improvements. Have you ever taken your son for a few Bowen treatments , if not I would recommend you give it a try, could give him more quality to his life. Just a suggestion. You are one fabulous mother,sending prayers into the universe for some wonderful lovely friends for your son. all my love :)
    Sherrie from Simpleliving :)

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  9. Hi Sherrie. Yes we tried Bowen Therapy and it had some benefit, but nothing dramatic. There's very little out there that we haven't tried :) You are lovely to think of us though. It is true that each case of CP is different, so I'm pleased to hear your friends had some success with it. Love to you too...x

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I love hearing from you! I always respond to comments, so don't be shy! Mimi xxx