This month, we are sharing stories written by our patients who have children with special needs. These stories were inspired by an essay entitled Welcome to Holland, written by Emily Perl Kingsley about her experience raising a child with special needs.
The Special Needs Team in the pediatric department has learned so much about the joys and struggles of wonderful and committed parents. Here is part two of Our Stories:
My daughter makes me feel that I am a lucky person.
I have a 16 year old daughter. She has epilepsy and delays in neurodevelopment. Many Chinese parents do not know what ‘special needs’ means, and I was one of them.
When my daughter was six months old, I noticed that she never moved her eyes, they just stayed to one side. Besides that, she seemed fine. At the time, I did not bring her to see the doctor for just that reason. Then, when she was ten months old, her whole body began shaking. This is how I started my special life journey.
She started to have delays in walking and speech, needed to be hospitalized and to see the doctor regularly for MRI’s and many EEGs. She also needed speech therapy and occupational therapy. I did not know anything about these treatments, and definitely not in English. She stayed at a specialized school and I was not sure if that was good for her. I did attend all the parent-teacher conferences and meetings. It was not until she was in 5th grade that I started to understand the special needs system.
In the past 16 years, I didn’t know how many tears that I had, and I was extremely tired. My family’s support and understanding was crucial, otherwise it would have been too much to bear. Over time, I began to understand her needs, and she has brought me happiness. Because of her, I learned that every special needs child is different. She allows me to learn the many things that I would not have otherwise known. Through my daughter, I met new parents. I learned the roles of a special need parents and their rights.
Currently she is enrolled in a private school, a very good school. My daughter makes me feel that I am a lucky person. Because of her, I learned about the special needs group at the Charles B. Wang Community Health Center. Because of her, I realized that I am never alone—I have assistance and support.
At that moment I held her tight.
I can often relate to the Chinese proverb, “Raising a child is for life”, especially because I am a mother of two autistic children. What we had gone through is beyond what words can describe. But today, I want to share with you that even though it was difficult, there were also heartfelt moments.
My daughter rarely shows her emotions. There was an incident two years ago that significantly changed how I see her. That day, I was sitting on the sofa in the living room and she was sitting across from me playing with her toys. I was peeling an apple and happened to cut my finger. I reacted with a slight, “Agh!” I could not believe what happened next—she stopped playing with her toys, came over and blew on my finger. She then pushed away my bangs, gave me a kiss on the forehead and smiled. I was very emotional at that moment and I held her tight.
For some parents, such a small gesture may not cause a rush of emotions. Her actions were enough to move me. After that day, I decided to use all my love and energy to reach out to her. I believe one day she may allow me into her world.
Written by Dr. Sherry Huang, MD, FAAP
Dr. Sherry Huang is pediatrician and member of the Pediatric Special Needs Team at the Charles B. Wang Community Health Center. She received her medical degree and residency training from the New York University of Medicine. Dr. Huang is board-certified in pediatrics.