I didn’t want to believe that my daughter was autistic, but getting the diagnosis has helped us both
The psychologist’s waiting room was dim and cozy but my daughter was impatient, running up and down. Several doctors came out to see who was causing the ruckus. Finally, my daughter’s psychologist came out. She sat quietly observing my daughter for a few minutes, jotting down notes and asking me questions.
Finally, I blurted out, “Doctor, is my daughter delayed?”
When she said yes, my heart sank. I felt so sorry for my baby girl.
QUIRKS AND SIGNS
When I found out I was pregnant, I wanted to be the “perfect mom” and have the “best child,” especially since I lost my mother at a young age and had a rough childhood.
In the early months, my daughter was curious but quiet. I felt fortunate not to have a crybaby. But as she got older and turned 1½ and 2, I began to worry that she didn’t have any words. At daycare, I was tired of hearing the same report every day of her “being good.” I wanted to hear that she said, “Good morning,” or, “Juice, please.”
When my daughter was a little over 2, a caseworker I had through preventive services encouraged me to have her evaluated, and that’s when the doctor gave my daughter a diagnosis of autism.
By then, I had noticed other quirks. My daughter had a fixation with constantly rubbing Mommy’s elbow. She insisted on turning on and off the light and TV. I also had to keep the same commute through the neighborhood so my daughter didn’t get scared in a new scene. If I tried to disrupt any of her routines, she would have a meltdown.
The doctor said that her repetitive behaviors, her dislike of new experiences and her limited vocabulary were all signs of autism.
A FLOOD OF FEELINGS
After the psychologist gave me the diagnosis, I struggled with a flood of feelings: despair, denial, anger and guilt. I pictured my daughter being totally dependent on me her whole life. I was afraid of being blamed for passing down my own or her father’s “bad genes.”
When I spoke to family and friends, often they didn’t know what to say, which left me feeling even more alone. My cousin said, “Do more research. Question what the therapist says. Doctors just want to keep kids dependent on medication.” Although I knew she meant well, it made deciding what I believed more complicated.
Part of me wasn’t sure whether to believe the diagnosis. After all, there were a number of factors that day that made my daughter’s behavior difficult. The appointment was late, and the toys weren’t to her taste. Besides, I myself was a slow talker up until age 4.
And there were lots of ways that my daughter just didn’t seem like a child with autism. She didn’t line up her toys a certain way or get upset if I moved one. As a matter of fact, she looked for me to join her and always wanted my praise.
But another part of me thought, “OK, I can finally put a name to what I am seeing.” Ultimately, I decided that whatever the reality, I was going to be as positive as I could for her.
More than anything, it made me want to hug my daughter tighter and keep praising her and building her confidence. I felt like I needed to go into Mama Bear mode. At daycare, I worried that my daughter would be left out of activities or not get an extra snack because she didn’t know how to ask, or that they would take her meltdowns as her being difficult. My anxiety was on overdrive.
Soon I had a series of therapists coming to my home. The first was inexperienced. The next came really late, and one was so rigid and repetitive that my daughter was completely frustrated.
I, too, felt frustrated. And guilty. I wondered, “If I had more money, could I afford better services?” Plus, I was working part-time and attending school. Evenings were the time I had available for the therapists, but my daughter didn’t have energy for evening services. I felt guilty about that, too.
Finally, I dropped out of school and cut back on work so I could switch services to the daytime. That also allowed me to take my daughter to the center for services. She responded well to the structured environment and playing with peers. Over time, she learned to gesture for what she wanted and point to what was bothering her. She began to speak and understand more. She also learned her ABC’s, 123’s, her animals, and how to answer social questions.
There were days when I was over the moon with her progress. Other times, I continued to question her diagnosis. My doubts lessened as my daughter continued to progress and her doctor took the time to answer all my questions and explain her thinking.
One of my daughter’s therapists told me that the worst thing I could do was crawl back into a shell to avoid reality. So I kept looking for ways to help my daughter.
JUST THE RIGHT PLACE
When my daughter’s early intervention services were coming to an end, I started looking for schools for her. It took me over a year of searching but my persistence paid off.
The school I found was spacious, with great educational tools, warm staff, and speech, cognitive and physical therapy. Now my daughter is meeting all her Individualized Education Plan goals. She’s learning new songs, knows the names of the children in her class and can identify shapes.
She’s also becoming more independent. A few times, when she couldn’t get on the school bus because of issues with the driver, she was really upset. That showed me that my baby loves her independence, she loves the commute and she’s zealous about school. I felt so proud of her.
When my daughter and I are together, she’s my world. Her personality is loving and warm. Sometimes she’s Mommy’s little helper. She likes to sweep up and mop. When she wants to go outside, she’ll hand me—or throw me—my shoes. She enjoys singing Disney songs. Most of all, reading books together is our thing. After I read, she tells the story back to me in her own little language.
I still feel sad knowing that autism doesn’t just go away. Sometimes I ask myself: Will it affect what careers she can pursue? How can I protect her from people that don’t understand her, especially with my limited circumstances? My daughter loves socializing. I don’t want her to ever lose that excitement.
Still, I’m glad I got my daughter evaluated, even though it hurt. I’m glad I kept finding support that has improved her life.
My daughter challenges me in the deepest ways. She imitates all my Mommy quirks and shows me with body language her love for me. Recently, my daughter started asking me, “Kay, mom?” (“Are you OK, Mommy?”) Feeling our bond fills my heart with joy and reminds me that we’re going in the right direction.