Tuesday, March 20, 2012
mothering a child with autism: the loneliest job in the world.
This past week there was an article in the Huffington Post about special needs parenting that truly hit home. Reading it, I thought to myself "Wow, I'm not the only one who feels all these things". Lately my days are more down than up, I'm a ball of stress. My stomach hurts, my skin is breaking out and the only sleep I get is the well medicated kind. Add to that, I seem to be spending most of my days on the phone, trying to explain to yet another bureaucrat that I understood their need to maintain numbers and limits and respect geographical boundaries, but they need to come to terms with the fact that kids with special needs don't fit into this jello mould they like to pour everyone into. And that's okay - the rules are there so that exceptions can be made to support the children who need special consideration. To which I'm politely told "no, we will not be making room for Max" (at the school he has attended for the past two years).
I feel myself starting to become unhinged. Because, as Max's main advocate and support, if I can't fix these relatively small problems for him, what good am I? And on top of that, if I don't do it, who is going to fight this hard for him? Clearly I can't trust others to prioritize his needs or even, quite frankly, do the right thing. There is so little I can control on this autism journey. When the few things I should be able to navigate go sideways I feel like I'm failing him. I want so badly for him to have every opportunity available to him to prosper and grow. When people say "no" to Max, I feel like I haven't done a good enough job telling them about Max. I haven't helped them fall in love with him. Ultimately it's their loss, right?