When my first son was born, a friend told me "when the kid is driving you nuts, always remember that it's just a stage, and he'll grow out of it. And always remember that once he's grown out of that one, there will be the next stage, which also will drive you nuts".
It was a good piece of advice — almost. Yes, my sons have grown through various developmental stages: from waking every three hours to sleeping through the night; the extreme uncooperativeness of being toddlers; learning to talk, rather than scream; moving from total dependence requiring constant monitoring, to being more and more independent.
But, because neither of my boys is "normal", their stages also have not been normal. My eldest son, now 14, is twice exceptional: high-gifted with ADHD and dysgraphia. My younger son, 11, has high functioning autism. These are things they will not "grow out of".
We don't know what it is to have a typical kid, so abnormal is normal at my house. It's not a matter of "coping", or "overcoming", or any of those other lovely word connoting bravery and success against the odds. It's our family, they are our kids, and we love them. It just is, and you do what is in front of you.
But sometimes, sometimes, I just get so tired. I wish I had different children, or no children. I want to run away and leave them behind, to escape the continuous stream of phone calls and e-mails and appointments, requests for meetings, forms to sign, questionnaires to fill out. Of the same issues and behaviors cropping up again, and again — and yes, yet again — despite our continuing efforts to discover and implement strategies. Of researching and reading and second-guessing ourselves. And, of course, feeling like failures, wondering what it is that we are missing because the kid ain't fixed, and we still are getting the phone calls, and having the meetings, and are, ourselves, dealing with the disruption that comes with having abnormal children who are not "growing out" of their disabilities.
Partly, I think, it is a problem of societal expectations. We want a how-to book, which outlines a cure for that which is incurable, and for hard work to be rewarded with the removal of obstacles. If only we could find the magic treatment: early intervention? diet? allergies? chelating heavy metals? a pill? more discipline? less discipline? different discipline? going to church and subscribing to James Dobson's child-rearing theories?
And as we — the parents — look for the magic bullet, the educators who deal with our children rely on us to solve their difficulties of having our abnormal children in their classrooms.
Except there are problems with that expectation.
For one, the child they have at school is different from the child we have at home. For another, while they are looking at us for answers and strategies, we are looking to them — fer chrissakes, they're supposed to be the "educational professionals"! Why doesn't the special education teacher know the difference between high functioning autism and Asperger's syndrome? How can a teacher get through a decade in the schools and never have run across a kid with dysgraphia?
And then there are the well-meaning "outsiders", from friends to relatives, offering advice about what worked with their typical kids who aren't dealing with disabilities. Or tut-tutting and second-guessing the choices we have made in dealing with ours. The strangers who look askance at your child's behavior, obviously thinking "what's wrong with that child?", while meaning "what's wrong with you parents that you can't control your child"?
Finally, there is the "why?" — not in the theological sense of "why us", but of causation. What causes ADHD or autism? Why can't my son use a pen and paper to take notes like a "normal" high-school freshman? Of course, knowing the "why" would be the answer to a lovely puzzle — but it does not solve the more essential question of "what do we do?"
Most of the time I love my boys as they are, and who they are. Sometimes I love them despite of who they are. But the reality for us, and them, is that they will not be fixed — ever.
And I know that I get so frustrated, and so angry, because I am so afraid. How will they make it in the world if we don't teach them solutions now?
No, my boys are not normal. They will not grow out of it. And right now, I'm tired.
A Little Bit Special is a regular series on disabilities posted on Sundays.
If you would like to participate as a diarist, please make a request to join the Little Bit Special yahoo group, or e-mail me at frankenoid at conen dot net.