"I don't know how you do it" is something I hear fairly often. It doesn't bother me, anymore anyway. I know it's something people say when they don't know what to say---it's meant as a compliment. I used to always think to myself "What choice do I really have?" but lately I've come to think of it, in my mind anyway, as a question---maybe not one that the person actually consciously wants answered, but a question to themselves---"Could I do it? Could I handle it?" Today I thought of an answer. The answer is "It's both harder and easier than what you would think".
Let's take the easier first. It's easier, in short, because you get to get used to it gradually. If I had no time to work up to it, if someone said to me "I'm about to give you a 6 year old daughter. She's going to be autistic. She will also be retarded. She won't be able to talk much, she will cry a lot, she will have extreme trouble with learning anything academic. She will need constant supervision, because she will be into everything and constantly in danger of hurting herself someone. You'll have her for life"---well, I would probably be eying the nearest high bridge. But I have had a while to get used to it, and I've learned that much of it really isn't that bad. When Janey is happy, when we can figure out what she wants and are able to give it to her, the autism and retardation matter very little. The retardation, maybe at this point not at all, to be honest. It makes little difference in the scheme of things if a 6 year old knows her letters, her numbers, if she can talk well, if she is understanding complex ideas. In the future, it will limit her, but right now, she is who she is, and just the fact she doesn't seem to learn well in some areas doesn't much bother me---most of the time. And the autism, at least parts of it, are not that bad either. The social parts are just her. She isn't going to say goodbye or hello readily, she isn't going to make great eye contact all the time, she likes the same videos over and over---I can handle those things. And in many ways, she's a delight, when she is happy. She is beautiful and funny and loving much of the time. She brings us a lot of joy, often. It's not like our lives are ruined by her (at least most days we don't feel that way) She is who she is, and that's the part that is easier.
But it's harder than you would think, too. What is harder than people picture is the endlessness of it. People get tired after taking care of her for an hour or two. And then they get to pass her along. They get a break from her demands, her tears, her confusing requests (things like handing me a bowl and saying "BOWL" a hundred times to try to get me to put some unknown thing in it), her constant quest to get into the fridge and take things out and toss them around, or to throw all her DVDs on the floor, or to open her diapers and make a mess, or to try to escape, or to do any of the things she does. But we don't get a break, except for school (which we are glad to get, let me tell you). Not ever. She is our responsibility around the clock. Imagine when your child was at their worst terrible twos---no impulse control, prone to sudden tantrums, etc. Then imagine that lasted...forever. And that your child was too hard for anyone to watch outside the family---that they never got invited to other people's houses, not because the other people are mean or don't like her, but because they are scared---they don't think they could handle her, and they might be right. That is the part that is harder than anyone can picture unless they have had a child like Janey.
But still, there are people that I would ask the How Do You Do It question to. People with medically fragile children, people who know they could lose their child, people who are single parents with an autistic child, people who have a child like Janey but not a school that they can trust. And they would probably say to me what I am saying to others---it's both easier and harder than you think.