The mothers of damaged children

My daughter is autistic.

To be more specific, she has Asperger's Syndrome, a form of autism that some experts argue should not be called autism but instead given its own special category. Others say autism is autism, regardless of the degree to which it manifests.

Day to day, mothers like me don't really care. All we know is that our lives are different -- in some ways more lonely -- than those of our peers whose children are "normal."

My daughter has a brilliant mind. It's so brilliant, in fact, that it frustrates me endlessly because her ability to communicate and demonstrate what she really knows and can do is hog-tied by some sort of neurological glitch -- a barricade that prevents the "real" her from shining through.

I will probably never know exactly why my daughter has Asperger's. In my darker moments, I've struggled with the guilt that maybe I should have eaten something different during the pregnancy, taken my pre-natal vitamins more religiously (they made me nauseous so I sometimes skipped them), refused the epidural in the delivery room (did the drug they used cross the placenta and somehow damage the baby?), or just said "no" to the forceps the obstetrician used to pull her out when she got stuck halfway. Was it the Hepatitis B shot or the Vitamin K injection routinely given at birth? They both likely still had mercury preservatives in them the year my daughter was born. I've combed through my memories of relatives who had eccentric or weird behaviors -- was this genetic? And when no answers come, I agonize over what the future holds for a beautiful girl with such pronounced difficulties.

Asperger's primarily afflicts social skills -- reciprocal communication, turn-taking, staying on topic, reading others' body language, using humor or having tact at the right moments. All things neurotypical people take for granted.

What little is known about Asperger's is the same "little" that is known about autism in general. The primary differences between the two are that children like my daughter developed language on time, their intellect is not shadowed by hints of mental retardation, and they are generally very teachable both academically and practically.

It all sounds good, doesn't it?

The problem lies in the day-to-day training, teaching, reminding, re-training, re-teaching. It lies in the $120 per week social skills therapy sessions that our insurance will not cover because my daughter's problem was not caused by illness or injury that we can prove. It lies in the deep-seated fear that no matter how much money we spend, no matter how much time we take, the end result will be someone who can never live independently and may never fully understand why. Worse yet, they may not care.

In some ways, people with Asperger's have it tougher. Outwardly, they appear so normal. Sometimes, if the phase of the moon is just right and the stars are properly aligned, they say and do the socially acceptable thing at just the right moment. People who don't know them well are led to believe they're just "regular" people, too.

But like the guest at a party who starts out lively and likeable before drinking so much he becomes weird and off-putting, the Asperger's sneaks in and compels the person to say something out of context, off topic, or otherwise just plain awkward. That's when you can see the distancing that takes place as peers, adults, and even family members start to pull away.

They're uncomfortable. They know how to feel sympathy (or pity?) for someone in a wheelchair, someone obviously disabled. They don't quite know what to do with someone who looks so deceptively fine until that person opens their mouth.

But the mothers of children with Asperger's know all too well what to do. The routine is familiar by now and wearisome in its repetition. Take the child aside, remind them of the relevent trick or tip they've learned in therapy, reassure them everything is okay (even when you're not sure it is) and send them back into the group in a sort of desperate sink-or-swim maneuver.

Children with Asperger's usually get invited to parties. Once.
Same for playdates.

Usually, the only thing that saves them is if they have siblings who are not autistic. Then, they get to tag along because the neurotypical sibling has been invited and parents feel bad about excluding anyone. Playdates work because their siblings do all the interacting and playing, so visiting kids don't mind coming over now and then, although they learn pretty quickly to avoid the child with Asperger's.

As I sit in the waiting room of the speech center where my daughter goes for social skills therapy, I watch the other mothers of children who come there in search of their own magic bullet. Some of the kids are deaf, some have Down Syndrome, some are severely autistic with language that consists of little more than grunts and shrieks, and some are like my child -- developmentally delayed just enough to need intervention.

As I watch these other mothers struggle with their writhing, screaming, crying, grunting, socially challenged children, I wonder at their capacity to love. I marvel at their ability to cajole and corral. And I realize all over again that I am one of them, the mother of a child the world says is damaged and who must be fixed.

And once again I debate whether I have the luxury of time to cry and pity myself or whether just like every other day for the past nine years I must summon the courage to plow ahead.

The tears last for a few minutes. The plowing, for the rest of my life.