I've always been fascinated by the world of blogging. So many people with so much to say. In all honesty though I have only ever followed one baking blog and that was just for a few months. I guess that's one reason I was reluctant to begin one myself. Did I have anything worth saying? Would anyone listen?
After the events of the last few weeks I know that I do have something worth saying, worth sharing, and I hope that I can give something to those who listen. You see, I'm an advocate. I advocate for my daughter and many others like her. I consider myself to be a voice for those who struggle to be heard.
My daughter has an intellectual impairment, amongst other various ailments. It's because of her that I changed my career to work with other children with learning difficulties and disabilities. She gave me purpose. Over the years through my work and through meeting other families in a similar boat I've found that often we feel dismissed, ignored, undervalued, misunderstood and occasionally out right discriminated against. My hope is that with this blog and a new Facebook page, we can create a community of support and advocacy and try and remedy some of those things that make life more difficult than it should be.
In the case of my daughter, she finds it extremely difficult to be her own voice. Making her own choices with assertiveness does not come easily. So many times I have seen the frustration in her eyes that just says "I'm tired of everyone always telling me what to do". So many decisions are imposed on her.
Lately, I have been made to feel the same. In certain arenas we as parents have not been given the opportunity to collaborate with other care providers and this has let us feeling angry and frustrated (not to mention writing a 3 page letter of complaint!). We have felt that our voice has not been heard and that others think they can impose their decisions on us and our daughter. We don't think that our voice is the only voice to be heard, but to be told upfront that you need to be quite in confronting and insulting.
I know in my heart this is not the way I want it to be. Professionally, I know that the best way to achieve the outcomes you want is to work collaboratively. When you have a child or a person who has many different people inputting into their life, team work is not only the best way to go, but the only way to effectively achieve the outcomes everyone wants. I visualise the two donkeys tied together pulling in opposite directions to get the carrot. If they both went in the same direction at the same time they could easily have both carrots.
As a parent I know at times I need to focus on the carrot my daughter is chasing. If her priorities are not my priorities how can we work together? If I help her get her carrot, she can trust me when I suggest a different carrot to chase.
It's the same when trying to work with her other care providers. No one care provider has the role of professional which sits above that of parent. We are all on the same playing field of skills and knowledge. You might be an expert in one field, but I am an expert in my child. I'm willing to listen to you and to take on board your advice, are you willing to listen to me? If we could all just sit down and talk about which carrot we are working towards, we'd all get their faster.