I got mad when our new pediatrician said, “Your daughter’s not talking much.” Then she asked the question that changed everything: “Does she have a diagnosis?”
We’d changed doctors after the birth of our son, and we were going in for his 2-week check up and Lily’s 2-year wellness visit. I had our newborn son strapped into the car carrier and held my daughter’s hand. We were practically dancing, walking from the car to meet my husband in the lobby. Lily was singing “Today is Monday.” She knew all the words, the foods for each day of the week. She sang the song beautifully.
My heart was full. I clearly remember thinking, “I can’t wait for the new pediatrician to see how beautiful and smart and strong she is.”
Lily had been reading phonetically since she was 18 months old. She knew at least a hundred words and at least 50 songs. She was obviously the happiest, most beautiful, affectionate and brilliant child any pediatrician could meet.
When we got called to the examination room, my husband and I laughed because Lily saw the doctor’s pink polished toenails and knelt down and tried to lick them, as if they were candy. I pulled her into my lap, and we got down to business. We answered all her questions with, “Yes.” Lily had met every milestone. Until that fateful question: “Does she have a diagnosis?”
Shocked, I paused, then said, “But she talks all the time. She has an incredible vocabulary. She knows entire, complicated songs. She loves learning and has been reading since she was 18 months old.”
“Yes,” the pediatrician said. “But she doesn’t seem to be talking with us much.”
At the time, Lily was walking around the room, naming things, full of curiosity, trying to push buttons on the doctor’s old computer.
The pediatrician noticed my obvious shock, and said, “It’s probably nothing to worry about. We’ll wait until her next visit and see how she’s doing then.”
I don’t remember another thing the doctor said about Lily or our newborn. My husband didn’t seem fazed by the interaction. I could think of little else.
I mulled it over on the drive home, talked about it with my husband that night. “What do you think she meant, ‘Does she have a diagnosis?’ Do you think she’s saying Lily has a learning disability or autism?”
I was angered at the suggestion and kept remembering a talk I’d had with my husband’s uncle, who worked most of his life with people with disabilities. We’d had a long conversation, but what stuck with me was him saying that multiple mothers of children with autism had said to him, “I don’t think my child loves me.” I remember thinking, “If that’s what autism is like, we never have to worry about Lily being autistic.” She’d always been happy and affectionate. She loved to sit in my lap, cuddle and play our made up games. She would laugh at the simplest things. With me.
As I talked it through, I realized she didn’t always make eye contact with my husband, my mom or her babysitter. I started piecing together a picture I hadn’t seen. Lily wouldn’t ask for things. She would reach for what she wanted, give signals that she wanted to be picked up. She would point to words on books as she sounded out words. She could read simple books she’d never seen before. But she wouldn’t point to or ask for things she wanted. I’d once found her sucking on a wet rag, rather than asking for water. She repeated phrases from shows or songs, but she didn’t talk with us.
I called a friend who works with 3- and 4-year-olds with special needs and asked what she thought of the pediatrician’s question. I expected her to be incredulous, too. But she gently told me, “Your pediatrician sees a lot of children every day, and if she thinks there may be issues, it might be worth looking into, worth getting her tested.”
I cried and said, “But she’s so smart and happy and affectionate.” And my friend delicately replied, “Yes, she is. And still will be, even if she happens to have autism or a learning disability. And if she does, there’s so much that can be done to help her, especially when you catch it early.”
I couldn’t sleep that night. I cried and cried and cried. I was afraid that the daughter I knew and loved was gone, and I might view her differently if she had a diagnosis. I realized I was crying for myself and my expectations.
I woke up determined. I started reading about autism. I Facebook messaged a friend who posted a lot about autism. She guided me to Easter Seals. I called them that day, set up an appointment to have Lily evaluated in our home. I was upset that it would be a month before they could come. I called another friend who has a child with disabilities and got a recommendation for a behavior specialist doctor. The doctor was booked up, and the appointment, made in July, was for March of the following year. I got the ball rolling.
Here I am, a year and a half later, still with the same beautiful, affectionate child. She gets occupational therapy and speech therapy weekly and is in her second year of special education pre-school with teachers she adores. She is happy and loving, and I’m her biggest advocate.
Not a week goes by that I don’t think of that pediatrician. She retired last year, and she’ll never know the impact she’s had on our lives. I give thanks for her. I appreciate that what she asked wasn’t easy. She took away the Lily I envisioned and gave me reality.
Reality is that my daughter’s brain doesn’t work the same as most people’s. It’s extraordinary. She’s eccentric and silly and fun. She’s still the happiest, most beautiful, affectionate and brilliant child. I’m the one who’s changed. I’ve gained more tools, more understanding.
As a registered nurse and now a mother of three, I appreciate a doctor who was willing to ask the hard question, the one that changed lives.