Advocate or Suffocate

When you have a child with Special Needs you often want to advocate for them. You want to find all the services that fulfil their needs, and make sure their rights as children are not ignored. I often find a lot of parents, like myself want to raise awareness. Awareness decreases ignorance of the particular condition, and with enough public awareness, it can often lead to positive programs and government funding. Since our children can not advocate for themselves, we have to do it for them. But how does one advocate for their child, fulfill all their needs, without over stepping the boundaries and suffocating their child? Making the disability define them. Not providing them a path where they can be themselves.

It's a very fine balance. With services and funding always being in short supply it's often a fact that, as the saying goes "The squeakiest wheels get the most oil" but sometimes even that is not enough. I've had to beg services that we are technically 'out of zone' for to help us because those within zone were full 6 months ago.

I am also commonly frustrated by common misinformation on Autism, how almost everyone has one picture in their head of what Autism is, and if my son doesn't fit that picture, I almost certainly get asked "Really? Are you sure?" Part of me thinks I should almost throw an Autism Awareness party, handing out information leaflets to each guest and making grand speeches. I have to restrain myself an remind myself while information and awareness are both important tools, the disability should never define or overshadow my son, and who he is.

After all, he is Alex, who happens to have Autism, Not Autism who happens to have the name Alex.