On this end, we’re still waiting on a new meeting date to get our son’s residential placement going.
This morning while waiting for the bus to his day program, I ran into a young woman’s blog piece about living with her brother and his autism.
What she describes gave me a brief shiver of memory. We endured some of this stuff for years. Yes, our son has come a long way; no, that doesn’t erase the gut reaction when reading
First of all, nobody truly recognises how tough it is merely to care for someone who needs assistance with everything. Stephen is 6 ft. 2 and has to be bathed, washed and nappies changed. Physically, and mentally, it is downright exhausting. His sleep schedule is non-existent and his meltdowns are unpredictable. His self-harming happens unexpectedly and can last for indeterminate amounts of time. These are the children you don’t see in autism awareness adverts; headbutting walls, smacking their heads, nipping and biting and scratching. It is the most draining thing to devote hours upon hours simply trying to prevent someone from hitting themselves, and a task that seems so stupid and meaningless in nature when you know that, come a few hours’ time, it will simply happen again.
And the decades between the young woman and our aging (aged?) selves evaporate as she describes our common worry,
I am 19; I should spend my days fretting about having enough money to go out at the weekend and passing exams to get my degree. My biggest fear about the future should be whether I’m going to achieve my dream job, what countries I will travel to. Instead, I worry about what will become of my brother. He understands nothing of pain and manipulation and danger. My brother is so bearing on the spectrum that he needs round the clock care, and when I am the only one left to do that, how will I cope?
OK, back to waiting.