There was a mother I met when Tal just started going to special ed when he was 2 years old. This mother was a feisty, clever woman with a fantastic, dark sense of humor. She was not the most optimistic woman in the world, but when she spoke for the first time in a parent group we had every week, she said that when she got her son's diagnosis, she knew she had to go to war for him.
The use of such a harsh word disturbed me at first, but I later learned what she meant. A few days ago, I heard another expression from another mother, a friend of mine. Speaking about what a mother would do for her child, she said, "you set a goal and time, and you go on a Jihad to achieve it." A Jihad, or holy war, sounded like an even harsher metaphor to me. But this time, not only did I understood what she meant, I totally agreed with her.
In an effort to make parents accept the fact that their children might have to live with a disability for the rest of their lives, some caregivers and professionals make a point of stressing how dire and irreversible the situation is. Believing in shock value, they tend to dish out the harsh diagnosis, and with it, sometimes, a very depressing prognosis.
While the knowledge and experience of professionals merits respect, parents should never forget the following: Parents know their children better than anyone else. And nothing in life is really predetermined; life surprises you every time, and it surprises the professionals as well. If they're too jaded to feel surprised, don't let it make you jaded.
I know of a certain professional who told a family that their son doesn't have much chance of advancing, and so they should make arrangements to put him in a special school for low-functioning children within two years. These parents practically resigned to it, but a friend told them they were foolish to do so. Even assuming this prognosis will come true, you have to aim higher, she told them very brashly. Go out and fight for your child. Use these two years to make the most of his potential -- even if this potential turns out to be not so high. That very same day, I read the amazing story "Wonder Dog" in the New York Times about how one dog changed the life of a disabled child who the world was ready to give up on. That child's parents were almost ready to give up, but his mother decided to go on one more battle, and she won it.
Not everyone is cut out to go into full-on battle mode. It may be helpful for some people to think of it as a labor of love. Semantics aside, the idea of giving up and accepting whatever so-called fate your child is handed never works for the best of your child. The idea of caring for children, of putting them in treatment, in special education or in a home program, is based on the assumption that children have an enormous potential for change. Their minds are still growing, and they can do things that could look miraculous to someone from the outside.
One little boy I knew when he was 3 1/2 could barely walk, didn't talk and couldn't do much more than a 1-year-old. But within a year and a half, he was walking on his own without any problem, he was talking and conversing with children and adults and his communication skills have come along light years. If you were to judge his potential based on what this little guy presented a year ago, he was a lost case. Now, a head taller, he stands among his peers, a living, lovely proof that a lot can be achieved in a very short time and with lots of love.