That said, since Mowgli's diagnosis, I have learned that adjusting your expectations is not only the hardest part of parenting, but it is the hardest part of being a parent of a special needs child as well, but in a very different way. By way of example, when Mowgli was born, I instinctively wanted him to love baseball, mostly because I love baseball and I wanted to share that with him. As he developed, and we found that he had difficulty playing catch, I adjusted my expectations that he would one day play baseball well. After his diagnosis, I again adjusted my expectations, when I realized that he didn't have the theory of mind necessary to play baseball, and decided that I would be happy if he just liked to watch baseball on TV. Since then I've realized that he doesn't have any interest in watching baseball, for the same reason he is incapable of playing it. At this point, I have adjusted my expectations to the point that I just hope he one day can participate in activities with other children that aren't solitary activities (like bouncing on his exercise ball or swinging). In fact, it is one of his individualized education goals - to participate in physical activity that requires social reciprocity. In other words, having a catch has taken on a whole new meaning and significance then if Mowgli had been neurotypical.
Another example is potty training. Of course "all kids are different" (which I really hate, mostly because it has no empirical limits and provides nothing in the way of useful advice, it's just a vapid statement about the unique nature of children). That said, having the expectation that your child will potty train at approximately the right time (between the ages of 2-4) is something that every parent has. We've not only abandoned that concept, but we had to adjust our expectations to the point that earlier this week we were discussing how nice it was that Mowgli had moved away from "exploring" his waste and playing games with his urine (think slip and slide indoors on hard wood floors, but without an available water source - "speaking of nobody's looking").
Effective communication (more than a few word utterances), moderately healthy social behavior, physical and emotional self-sufficiency - these are the things that we use to judge ourselves as special needs parents. All of the advice in the "What to expect..." series of books might as well be "expect your child to win the Nobel Prize at age 8 - this is standard" or "your child may intuitively know complex surgical procedures - help them by fostering their interest in advanced human anatomy", because that's how useful those books are for special needs parents. Benchmarks, developmental time lines, and, for your own sanity, expectations, are replaced by glimpses of hope, double takes, and talking to yourself in the basement with tears in your eyes something to the effect of "sweet beautiful baby Jesus, if you're out there, please show me that this is all worth it."
Tomorrow is a new day, and not only have I given up on the possibility that one day he'll wake up and tell us that he was just screwing with us to get as many popsicles as he could, I've also given up on having any expectations whatsoever. I don't try to predict what will happen, I don't plan anything past tomorrow. It's not fair to him to have expectations, and it isn't healthy for us to hold on to them. This way, everything he does that is the slightest step forward is its very own miracle - worthy of satisfying my need for a daily (or during tougher times - a weekly) confirmation that things aren't static. That, though sometimes glacial, they are nevertheless moving forward.
On really good days, on the days that he does something so beautifully unexpected that you barely believe that it even happened, those are the times that he and I are sharing something, those are the times that he's asking me "Hey Dad, you wanna have a catch?"
Posts
