Wednesday, November 20, 2013

Fighting Chance blog 15

The Value of Carers

Parenting is the hardest job in the world especially if you have children with special needs and/or children who acquire PLCs “Permanent Lifetime Challenges” later on in their lives. While most parents look to either respite centres or youth disability recreation centres as a means to get routine breaks, the next question now becomes: how does a parent continuously implement and maintain a sense of social normality and balance outside of their child’s disability? Perhaps consider this alternative: a carer.
When I was growing up, my parents always insisted that I’d treat myself the same way as everyone else and conduct myself with complete normalcy (whether it’s with my attitude and/or my physical capabilities) and while they encouraged me to try respite and a youth disability recreation centre – I on the other hand, felt that they were a periodic-to-temporary fix for me because I knew deep down, that there was a place of societal normalcy within my reach, outside of my disability which I have strived towards, and successfully fought for.
Personally, I’m a really talkative person; a good conversationalist who is also sociably interactive. I love that I can structure and plan my own activities as I am relatively physically and psychologically capable. However, I sometimes feel that my sociability gets hindered by the fact that my only means of independence is then defined by disability agencies and event placements. I get told that I can only go X number of kilometres on a given day, and am only allotted a community access carer 2x per week. As a result, if an event or something I wish to do is outside of those allowances, and my parents can’t take me, bad luck for me, which I feel is completely unfair to me and/or anyone else in my position.
This is where the role of carers comes in because they’re able to provide and help you maintain a sense of social independence that everyone yearns for and a positive relationship with your carer is imperative, you need to find someone who will encourage you to be social, and is willing to go the extra mile to make sure you get the life you deserve. The “extra mile” entails putting in the energy to develop a good client-carer relationship (even friendship) with open communication, being open to trying new and different experiences, despite the effort required to participate in these things, and even sometimes suggesting them.
Unfortunately carers like this are rare and finding one involves navigating a veritable minefield or different agencies. When you do feel that you have found someone suitable you then have to take into account whether they are genuine or if it is a façade, which ultimately begs the question of how much their care has to do with gaining money, versus doing it as a humanitarian cause. Regrettably some carers are just money hungry, doing the minimum amount of work while trying to get as much money out of the work they do. An example of this is refusing to work any day but Saturday or Sunday, despite having the time to work during the week.

The quality carers I have had, have made the world of difference for me, and were worth the minefield I went through to find them, I’m the most sociably active I have been in my life, and it’s a load off my parents. So if you’ve ever thought about getting a carer, I would give it a go!

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