Imagine This

It's October of 2000.

You are a pregnant woman, due to give birth in December. You feel like hell, and the cool autumn breezes haven't yet arrived to provide relief from the constant coastal humidity.

You're a medical professional, spending 40 hours a week on your tired feet, even as your due date approaches. The longer you can work the more money you can sock away for baby things, for life after delivery.

And then, there is a problem.

*

Something doesn't feel right. Your husband takes you to Houston, shortening the hour-long drive through sheer force of will and accelerator aggression.

You are in the worst pain of your life.

You spend a week in the hospital, trying desperately to keep the baby from arriving too early. Every day is considered crucial for his development at this point. Finally your body's will prevails, and your child is born, several weeks early.

*

He's a tiny thing, alive but under-developed. This helpless little boy doesn't yet have lungs developed well enough to absorb the oxygen he so desperately needs here in this new world. A shot of a steroid can help, and despite the nodding approval of your doctor and your trust in your training, you simply cannot get comfortable with the needles and the lights and tubes necessary to give him a chance.

He gets the shot.

You are sent home, leaving him alone in the hospital.

*

Each day you visit him, not getting to hold or even touch him much, as he really needs the safety and stability the machinery can provide in this harsh new environment.

He stays for a month. After every visit you must return home without him.

*

Finally he gets to come home, and as you try to settle in you must consider the doctor's warnings, the developmental indicators you're so wary of, the fact that he's only now home and in his mother's arms.

*

His very existence is a miracle, aided in no small part by the plastic equipment and needles and chemicals thrust upon him from birth. He's alive, he's eating, crying, and in fact, he is thriving. He is going to live, so it seems.

He is also not quite normal.

*

At such an early age it's difficult to get anyone to say anything definitive about what you're seeing. The ages for developmental milestones come and go, and he progresses very slowly. "Low muscle tone," you hear them say. Even so early on there are suggestions of other possible challenges: autism, Asperger's syndrome, other diagnoses better referred to as a collection of elusive symptoms than one pinpoint, treatable illness.

You are worried sick and exhausted.

You are also smart and determined, and your own medical background, while exacerbating your anxiety with facts and research, gives you direction.

He is six months old, and you put him in physical/occupational therapy.

*

Friends and family try to comfort. Some dismiss your concerns altogether, while others wrinkle their brows and speak in useless platitudes. They mean well.

The days tick by, slowly, and you take him to therapy, over and over. You also dutifully do your work at home, with simple exercises like brushing his hair, trying to teach him to integrate his senses.

Speech age approaches, and he makes it clear that he needs therapy for that too.

More trips to offices, more appointments with psychiatrists. Letters, phone calls and emails with experts prove to be a morass of conflicting information. No one's quite willing to give a name to this syndrome, though it's clear it falls under the autism spectrum.

*

So you set a goal: Kindergarten. You want to work hard, fight this thing, and see if you can train this child to fit in with his peers by the time he's in public school.

Years go by, and he's progressing. Mixed in with behaviors most folks dismiss as childish quirks, behaviors you know better than to ignore, you see progress. Words, sentences, motor skills. His forward momentum comes in bursts, with heartbreaking setbacks here and there.

*

Fall of 2003 you are pregnant again, expecting a little girl any time. You're anxious, and rightfully so.

The pregnancy is full-term. The baby is fine.

FINE!

You look for signs of more trouble and find nothing.

*

Summer of 2006 and the occupational therapist has a surprise for you: He's done, dismissed. He has achieved his goals, making great progress with gross and fine motor skills. You're surprised, taken aback, and thrilled. You tell friends and family, and they congratulate you. They mean well, but they can't grasp what the magnitude of what has been accomplished.

*

Fall of 2006 is almost here, and the speech therapist dismisses him too. He speaks and comprehends well, and has the tools to learn to read and write.

You tell his kindergarten teacher and principal about this milestone during a meeting. They have no idea he's any different from any of their other kids.

*

30 years ago this child might not have had access to the resources to foster such progress. He might have ended up in the "special ed" program in school, which back then meant he'd be in a dank classroom by the cafeteria with kids who have Down syndrome or cerebral palsy or somesuch, kids who need help, but not the same kind of help he needs.

*

All the years, the miles, the appointments, the therapy... they're all done. He's smart, sweet, quirky, and fits in with his peers. You still see things that make him different. He knows how to push your buttons with his unusual mannerisms, though he seems to thrive in school's structured environment.

*

And when your friends and family members congratulate you on his progress, you thank them, but claim you think it's mostly luck, that he happened to be more receptive to therapy than many kids with the same symptoms might be.

***

This is about my sister, Amanda.

I almost put her email address up here, but I won't do that. Finding her contact info is easy enough if you poke around this site and make a few smart clicks.

I would be thrilled if you would care to leave comments here for her.