Free Carly’s Voice by Arthur Fleischmann Page B

system; there was no substitute teacher were he to get
     sick or need a day off. We lived in fear of anything that would prevent him from arriving
     at our door in the morning—a personal appointment, a snowstorm, even a cold.
    “Howard, I forbid you to get sick,” Tammy once half-joked with him when the flu was
     ripping through our community. But it was no joke, because without Howard, we were
     adrift in an ocean ofCarly’s mayhem. Whether out of good luck or his sheer determination, Howard has never
     missed a day of work without devising an alternative plan for Carly.
    After six months, it was clear that Carly was not ready for a mainstream classroom,
     with its twenty-eight children and need for quiet and discipline. In the middle of
     class she would stand up and repeatedly slap the table and yelp, startling the students.
     This time, we didn’t need the principal or school board to push us out. We knew it
     was time to go.
    As an alternative to the public school, Howard attempted a partnership with a small
     Montessori school. Here he would take direction from the director and teacher and
     try to create structure in Carly’s day in the less restricted environment. The school
     had hoped that if it worked with Carly, they would start a program for other children
     with autism the following year.
    The venture withered after the first year, however, due to high costs and lack of
     resources. To provide the level of specialized education required would have cost
     parents nearly $60,000 per year. There weren’t many takers.
    We were exhausting all options. After six years of ABA, Carly had mastered a number
     of self-help skills, but her hyperactivity and verbal tics made her an educational
     pariah. While my career was gaining momentum, our credit line was maxed out, making
     attendance at one of the few private autism schools out of reach.
    I could feel Tammy lying awake at night, her brain whirring through the meager options.
     “It would be so much easier if Carly were more disabled,” she lamented. “If she were a little more blobby, at least we could contain
     her.” What could I say in response? It was true. We had met families with children
     living with a full spectrum of challenges and, ironically, the ones with physically
     depleting disabilities had a place in the system. We were rejected like a transplanted
     organ.
    A kid’s ’tween years should be filled with excitement and discovery. Taryn was experimenting
     with dance and drama, soccer and overnight camp. But Carly’s childhood felt like a
     slog through mud. It was hard to rejoice in her newfound abilities to sort letters
     and spell a few simple words or to take turns playing a game of checkers when minutes
     later she would spontaneously fling herself to the floor and bang her head or compulsively
     dump plates of food and glasses of juice.
    With no public school options, we improvised our own school. Our basement family room,
     which had long served as both Tammy’s office and space for Carly’s ABA, became a one-room
     schoolhouse. Howard, Barb, and whichever ABA provider we were using at the time strung
     together hours of activities and programming to keep Carly busy. She wasn’t getting
     a diet of academics, but her mind would have to wait for her body to catch up. To
     our list of responsibilities—parent, manager, advocate, therapist, and prison warden—we
     could now add schoolmaster. As Carly got bigger, it seemed our world got smaller.

4

Sleeplessness
    Even now, with the worst of it behind us, I have a sense of foreboding at bedtime.
     Through most of her childhood, Carly’s constant movement and inability to settle tormented
     her sleep and ours. She would struggle to fall asleep at a reasonable hour and to
     stay asleep for more than four. All parents go through sleepless nights with their
     infants, but by forty I had hoped to be past this phase of my life.
    One night, around eleven, when Carly was little, Tammy and