Raising Children with Special Needs: Our Stories | Part I

When I joined the Charles B. Wang Community Health Center, I was fresh out of residency training. I loved the work that I was doing and loved giving back to the community where I grew up. I learned a lot from my wonderful colleagues in the pediatric department. However, as I started seeing more patients, I found myself lacking knowledge and resources to provide better care to families with children with special needs. These families have children with conditions such as autism, developmental delay, epilepsy, or down syndrome, and they all need extra special care and support.

As our health center was becoming certified as a Level 3 Patient Centered Medical Home, we took this opportunity to create a Special Needs Team in our department to improve the care that we provide for these families. Fast forward 4 years, 19 monthly Parent Advisory Groups meetings, many staff trainings and parent workshops, and 9 parent support groups later, and I feel proud that we, along with our parents, have created a system that seeks to care for our patients in a way that is holistic and compassionate. By coordinating care and working closely with specialists, social workers, therapists, educators and community providers, we try to provide the best care for those families who strive every day to help their children reach their best potential.

Parents of children with special needs have incredibly inspiring stories to tell. Recently, we shared with our Parent Advisory Group an essay entitled Welcome to Holland, written by Emily Perl Kingsley about her experience raising a child with special needs.

Inspired by this essay, our parents have written their own, in Chinese, about their experiences. Our team has learned so much about the joys and struggles of these wonderful and committed parents.

We will be sharing some of these stories with you this month to celebrate National Autism Awareness Month. Here is part one of Our Stories:

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When my daughter is absolutely happy, the feeling is like taking a vacation in Hawaii

Thank you to the Health Center for providing and sharing the article “Welcome to Holland”. After reading the article, I was touched. It reminds me of my own situation, which is caring for a special child at all times. It also enlightened me on ways I can care for my child.

I struggle every morning to get my daughter to brush her teeth and wash her face. It’s a simple task, yet it stresses me incredibly. To keep the problem from getting worse, I continue to look for a right method to teach her. That takes patience, persistence, and practice, but hopefully it will get better one step at a time.

Sometimes she throws a tantrum for no reason. During times like this, it’s like the aftermath of a battle where things are in disorder and the future is uncertain. At times like this, we try to avoid escalating the problem and to minimize the damage. After things calm down, I think back to how the problem began, what I did well, what I didn’t do well, and how I can do better next time.

When my daughter is absolutely happy, she often laughs and hugs us. The feeling is like taking a vacation in Hawaii—where one is relaxed, joyful and stress-free.

These kinds of situations, where my daughter’s emotions fluctuate, happen for a reason. This is because she is a special needs child. I need to have an infinite amount of patience, love, energy and time to cope with the situation. It’s also important for me to continue to learn how I can better care for her. The more that I know, the better parent I can be to support her. That way, I can be on vacation more often.

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When they grow up, they will understand that we care about them

We have two children, a 20 year old son and a 16 year old daughter. My daughter has autism and developmental delays. She has changed my life. Sometimes, my emotions fluctuate with my child’s temper. I can only look forward to the future, hoping that tomorrow will be better as I continue to seek more services to assist my daughter.

Sometimes my friends ask, “You’re spending so much time with your daughter, do you feel that your son is neglected?” We do consider his feelings and explain to him why we need to spend a lot of time taking care of her. We use dinnertime to chat and talk about school, friends and the news. Sometimes we argue, especially during those years when they were more rebellious. But when they grow up, they will understand that we care about them. That way, when they are happy or sad, we hope they will share their feelings with us. We encourage them to have their own interests and make more friends. These discussions also allow me to know my children’s personalities, their values and how they interact with others.

 

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 School of Medicine. Dr. Huang is board-certified in pediatrics.