Friday, July 07, 2006

Reflections, after the fact, on raising a child with disabilities: In the long run, we were lucky--some kids don't make it

Every now and then, if our timing is right, we still see a woman who lives across the street put her daughter on the school bus in the morning.

The only problem is, it isn't a school bus anymore.

Her daughter went to the same special ed. school as our son.

But our son was in the college-bound track.

Her daughter was in the sheltered-workshop track.

Our son has completed the fourth year of a five-year physics major, with a minor in Japanese. We expect him to go for at least a master's degree, possibly a doctorate.

Her daughter will probably never have much of an income other than S.S.I., a monthly payment from a U.S. federal government funding program for people who are permanently disabled.

Some parents know from the beginning, or close to it, that their child has a problem. Some figure it out as they go along, with and/or without outside help. Some just pretend that nothing's wrong.

Then there are the "timebombs." We know a few of those. Our son was fortunate enough to outgrow and/or learn to compensate for his problems as he entered his mid-teens. In some cases, however, problems that are not that apparent when children are younger become glaring challenges to the possibility of leading a normal life as a child ages and/or enters adulthood. (Executive function problems made it so difficult for one young person of our acquaintance to organize himself well enough to get his schoolwork done, once he was away from home and had no one keeping him on track, that he had to be pulled out of college after his first semester. He is now serving in the military.) In other cases, there's no indication whatsoever of the existence of a disability until it suddenly manifests itself in an individual's early adulthood and wrecks what had been a perfectly normal life. (I understand that paranoid schizophrenia frequently manifests itself for the first time when one is in one's twenties. She was going to be an astrophysicist. At this point, it appears unlikely that she'll ever even be able to return to college.)

I must also caution you that just because your first child is "normal" doesn't necessarily mean that subsequent children will be so fortunate. Conversely, just because your first child has a disability does not, by any stretch of the imagination, mean that none of your subsequent children will have a disability. I cannot tell you how many families I've heard about who have multiple children with disabilities. (Two children, members of the same family, with Attention Deficit Hyperactive Disorder; two children with Down's Syndrome; a family of five children of whom the first three were born profoundly deaf; two children with severe mobility challenges.) When our son was young, we were (or mostly I was) nagged to death to have another child. "Oh, the second one will be fine." "Oh, yeah? Says who? And if she isn't fine, are you going to take care of her?"

When our son was young and giving us enough trouble to turn my husband's hair gray and make me want to jump off the Brooklyn Bridge, I never dreamed that a day would come when we would consider ourselves to be among the lucky ones. Our son "made it." Other people's children did not.

I don't know what's going to happen to my girlfriend's daughter, in the long run. As the slogan goes, "A mind is a terrible thing to waste." But it's hard not to, when the meds sometimes make it difficult even to read, much less study astrophysics.

As for the mother of the military man, well, as the old saying goes, "Be careful what you wish for." Years ago, when my kid was still impossible and her son and daughter were perfect angels who were doing very well in school, I used to say to mutual friends of ours whose kids had assorted learning disabilities that it would serve her right to have one of her kids turn out to be disabled just so she would know what the rest of us were going through and stop being so obnoxiously smug. For years, I avoided talking to her about our sons as much as possible because I didn't want her shoving her son's perfection down my throat. Now, I avoid it for the exact opposite reason--my son's majoring in physics, whereas hers nearly flunked out of college after his first semester.

And I don't know what to say to the woman across the street anymore.


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