It’s daunting really. The idea of taking care of someone for the rest of your life. As a mother, it’s in my nature to want to care for my children- to control them, to be by them for triumphs and tragedies. I am all for it, in fact I find joy in taking care of them. The one thing that scares me is the unpredictability of autism. There hasn’t been a lot of maturation in Phoebe in the last few years. She has leveled out at about a 4th grade level. (Maybe) So, the idea of taking care of a child, for the rest of my life, with the mental level of an 8-9 year-old is starting to play on my mind. I’m beginning to see that it’s wearing on me. I have more wrinkles, aches, grey hair, stress, ulcer activity, heartburn…you name it. (I know- I’m 42, it’s normal right?) I need to come up with a plan, and it’s not coming to me very quickly.
Lifetime of care
I find happiness in seeing my younger child be successful at school, and have friends, and be great in sports, and all that fun stuff. He’s becoming more independent each day, and loving life as he grows. In the same breath…it breaks my heart that a child with autism does not have that same experience. Does she want that? Of course. Do I want that? Yes–more than anything. I foster those experiences for her. I take her to every store, game and every other possible thing I can. I want her to experience life, and get used to the unknowns. But, what’s going to happen when I am gone? Who will take her? Who will foster these things for her? Unfortunately, no one cares for your own child as much as you do. It’s true. (really)
So, starting this year, I have to put my big girl pants on and come up with a plan for this child, who lives in a woman’s body. I have to make sure she is protected from harm, and taken care of medically, and that she has shelter, food, money, and FRIENDS. How can I do this? I have no idea…but the research starts now. If I could live forever, I would give her a lifetime of care- no problem.
But, I am not getting any younger, and neither is she.
Phoebe ASD World 