Meaghan stood by the hospital window with her
back to me, captivated not by the view but by the play of light and shadow
reflecting off the blinds. At her feet was a plastic crate piled high with all
manner of enticing toys. If she had seen it as we entered the waiting room, she
had given no indication. Instead, she had gone straight over to the window.
As I
sat and watched my young daughter, I wondered, not for the first time, what she
could be thinking.
My musings were interrupted by the approach of
an attractive young woman. “So this is Meaghan,” she said as she drew near
us. “And you must be Meaghan’s mom.” She extended her hand. “I’m Joan
Axelrod. I’ll be your daughter’s case manager.”
Meaghan turned and, cocking her head, observed
us with slightly glazed eyes as we shook hands. She had awakened with a terrible
head cold, but I dared not let her miss these crucial evaluations.
“What a pretty little girl you are, Meaghan,”
Joan observed with a smile. “Would you like to come with me? I have lots of
nice toys in my office.”
After a slight hesitation Meaghan walked over
and took hold of her outstretched hand, toddling off without a backward glance
to a session that would forever change the course of our lives.
My feelings as I followed along were hardly as
blase. I knew why we were here. We were here because my daughter, who would turn
two in a week’s time, had yet to utter a single recognizable word. There were
a few other developmental and behavioral concerns I had, but primarily I was
troubled by Meaghan’s lack of speech. I was counting on this round of
evaluations to pinpoint a specific and hopefully remedial cause for her
continuing silence.
I honestly didn’t believe that my daughter’s
problem, whatever it was, would turn out to be anything too serious. Her
developmental history to date had been relatively unremarkable. Her birth was an
excruciating, eighteen-hour ordeal that left me marveling that any woman would
put herself through it more than once, but Meaghan had emerged none the worse
for the wear and tear. She’d cried out lustily after her forceps delivery and
had weighed in at a hefty eight pounds eleven ounces. She was slightly
jaundiced, accounting for a one point deduction on her apgar, but she had the
requisite ten fingers and toes and no observable abnormalities in appearance, so
she was, to my mind, as perfect as she could be.
She continued to be a nearly perfect infant.
She reached all her developmental milestones -- sucking, smiling, babbling,
rolling over, sitting up, crawling, standing and creeping -- within the normal
baby time frame. Her walking was a bit delayed. She didn’t take her first
unassisted steps until sixteen months, but I hadn’t pushed her to do so. Also,
she’d had a bit of difficulty chewing and swallowing solid foods when I
introduced them to her, but she’d since overcome the difficulty. She had been,
overall, a pretty happy and, save for a critically high fever she spiked at
seven months, healthy baby.
This is not to say that she never fussed. She
could fuss and tantrum with the best of them. But she could be readily comforted
by being held and walked around, or by a rocking or bouncing motion. She had
never shunned physical contact. If someone wanted to play with her, she was
happy to be picked up and played with. But she didn't seek out attention. She
was content to sit in her playpen or walker and stare into her teething mirror
or endlessly twirl her toy rattle.
At night she would fall asleep by getting up
on all fours and rocking herself into slumber. As she grew bigger, she rocked so
vigorously that she frequently managed to propel her crib from one side of her
room to the other. Sometimes, in the middle of the night, I’d hear the
telltale wiggling sounds of her crib and wonder if she would cry out for me, but
she never did. She was remarkably self-sufficient; silently capable of keeping
herself amused and comforted.
When she was about eighteen months, I’d
started bringing her to a Saturday play group at a local library. By this time,
Meaghan had begun to have a serious fascination with hair, with touching and
pulling it. She was indiscriminate in whose hair she pulled. She’d go after
any head that came within her grasp. At family gatherings all her cousins knew
to tie their hair back when Meg was on the loose, but the little toddlers in her
play group were not so wise and wary. I spent every session shadowing my
daughter, alert to any sudden movement of her hands toward the silky tendrils of
her unsuspecting targets. The upshot, of course, was that I could rarely allow
Meaghan to get close enough to the other children to actually interact with
them--the sole purpose of my bringing her to the play group in the first place.
And I never got much of an opportunity to talk to the other mothers, unless it
was to apologize for my child’s bizarre behavior.
I did observe the other children though, and I
particularly listened to what they were saying. It struck me that almost every
other child in the group, with an age range of about one to four years, had some
vocabulary. Even the youngest babies would babble or gurgle or signal that they
were enjoying the fray by making frequent eye-contact with their mothers. But my
child said nothing. Nor did she ever glance my way. She just toddled about, toy
in hand, chasing after hair. Each time we went I carefully observed the others, looking for another child
like mine, and when I didn’t find one my heart would sink a little further.
Meaghan’s pediatrician was unconcerned. In
fact, he was in such a rush all the time that I was loathe to take up his time
with my troubles. But I was beginning to suspect a problem, and I desperately
wanted someone to either validate my concern or to offer me some concrete
reassurance that I had no real reason to worry. I decided to switch
pediatricians.
I brought Meaghan to Dr. John Schey for an introductory check-up
when she was two months shy of two years. He listened patiently and carefully to
all that I had to say and, when I was finished, asked several probing and
pertinent questions.
“How does Meaghan play with other children?”
was one of them.
“She doesn’t really play with them,” I
responded truthfully. “She’s only interested in pulling their hair.”
“I see,” he said. “And toys? How does she
play with toys?”
This stymied me. I was concerned about my
daughter‘s lack of speech, not about how she played with toys. I wasn’t sure
how to answer. “She plays with them like other kids do. At least, I think she
does.”
Now, sitting in the tiny evaluation room at
North Shore Children's Hospital, I was able to observe exactly how my little
girl played. She went from toy to toy, picking them up, sometimes mouthing them,
sometimes shaking or twirling them, then putting or dropping them down. There
was no purpose to her actions, nor any sustained attention to any toy. At home
Meg would sometimes allow me to show her what to do, but here I was told not to
interfere. Joan wanted to see what she would do -- or not do -- on her own.
Several times, when Meaghan seemed interested
in a particular toy, Joan took it from her and hid it in a suitcase or behind a
small screen. Meg neither objected to the taking of the toy, nor made any
attempt to find it.
I knew she was not feeling well but, even so, her
disinterest disturbed me. It seemed that once a toy was out of sight, it went
out of her mind. She was uninterested in exploring the various ways she could
manipulate things. She tried to pry open the little doors of a Mickey Mouse pop
up toy rather than pressing the obvious buttons. And, although she did push a
toy truck around the room briefly, it didn’t occur to her to use the attached
string to pull it. Even when shown the correct way to play, Meg preferred to do
things her way.
Finally, after two of the longest hours of my
life, the session ended.
Steeling myself, I asked, “How did she do?”
Joan looked me in the eye. “She has some
definite delays,” she said. “But why don’t we wait until the other
assessments are in. We’ll know more then.”
She knelt down to my daughter with an indulgent
smile. “Good bye, Meaghan. I hope you feel better tomorrow.” Meg responded
by lifting her arms and placing them around Joan in a tentative hug.
“This is a good sign,” Joan said, looking
up at me. “It means she probably isn’t autistic.”
My eyes bulged. Autistic? What on earth? I knew
next to nothing about autism, but I did know that it was a very serious,
lifelong affliction. The mere fact that the word had been mentioned in
connection with my little girl sobered and terrified me. Tears prickled my eyes
as I thanked Joan for her time and took hold of Meaghan’s hand.
We had time for a brief bite to eat before our
appointment with a mental health assessor. Next would come a neurological exam.
I wasn’t exactly sure what neurology was or how it fit into my daughter’s
problems, but I was suddenly leery. Still in store for the remainder of the week
were occupational and physical therapy assessments, audiological testing and
finally, on Friday, the all-important speech and language evaluation.
When I had first received a copy of the
schedule, I had blithely predicted that we would breeze through all but the last
few appointments. Now, I wondered how we would survive the week.
(This is just the first
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