Tuesday, June 12, 2012

Things that are true.... Or, Activism.... Or, It could be worse

Lately I find myself looking at this blog, and feeling somewhat uninspired!  I have about 10 posts sitting unfinished. I'm finding it hard to write about my life. I'm not depressed or sad. I'm not really struggling. I'm probably just over thinking things a bit.

Like, when I think about writing about the few struggles we've had lately I find myself feeling like a whiner. I mean- I am so lucky in so many ways! My kids are all healthy. We live in a warm, safe house. We sleep soundly in our beds at night without the sound of gunfire in our ears. We eat every day- 5 or more times every day actually.  We have access to good healthcare services and allied health professionals. My kids are *only* Autistic. It could be so much worse.

It is true that living with 2 kids who have sensory and communication struggles is not easy. It's not easy for me and their dad. It's not easy for their siblings. It's not easy for them. The 2 older NT kids and I have had many a discussion recently about how unfair it is to have a sibling with a disability. I am mindful of not minimising their experience, so I validate their feelings, but I am also hoping that somehow I can help them realise that their experience is so much easier than their brother and sister's. I hope that they are growing up to be people who are going to respect difference in others. When I talk to them I can see them struggle between a desire for self preservation and compassion. This feeds my hope. It could be much worse!

It is true that organising appointments and therapies and communicating with school is tiring. But I am immeasurably thankful for the support we do get form so many willing people. I am angered by recent changes to funding provided to schools to support my kids, and am working hard to see something done to change that. However, unlike many, my children are fortunate to have many who care about them in their lives, and who will do their utmost to support them well, even with the reduction in funding. It could be so much worse.

It is true that having an Autistic child is expensive. If we didn't have Autistic kids that part of our budget that goes toward paying for Psychologist visits, Therapy appointments, petrol to get to them, particular kinds of clothes and foods, feeding "obsessive interests", providing sensory tools, etc.... could be  used for other things. But we have access to so much in the way of support, and there is some funding that helps cover these things. I know parents of children with more debilitating physical disabilities that do not have access to as much in the way of support and funding. So, really, it could be much worse.

I could go on, but you get the idea! It's hard to write about life when I have such a dichotomy of thoughts running around my head!

I'm also tired from all the other writing I've been doing- letters to politicians about funding, and raising awareness about the changes Government is making in the community. I feel a bit like all I'm doing lately is complain. But the thing is, for a long time I looked at other people and admired their conviction, their assertiveness, their "gumption".  I saw other people stand up and talk about things they were passionate about, and for a long time wondered if I would ever find something I would get up on my soapbox for.  Well, I found it. Just because something is legal, or common, or "the way it is done" does not make it OK. I feel strongly that I should speak up, but at the same time I don't like feeling like a complainer. Maybe that's what the word "activism" is for- complaining for a good reason and with purpose.

activism |ˈaktəˌvizəm|nounthe policy or action of using vigorous campaigning to bring about political or social change.DERIVATIVESactivist noun & adjective

But I don't feel much like an "activist". I don't see any political or social change as a result of my "vigorous campaigning"! I've sent numerous letters out to politicians and had one response! Is that how it works? You get passionate about something and do everything you can, then just accept being ignored?  
And then something that seems little happens....  while I've been writing the guy arrived to check our smoke alarms. Miss G clearly and confidently introduced herself !!  She has struggled with this skill, and  hearing her sweet little voice say her own name so proudly to a stranger was a big deal to me, even though it meant nothing to him. Maybe my role is just to be content with making a difference in 5 lives?  .....  It could be worse!! 

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