My Journey as a Parent of a Special Needs Child

April 02, 2021 / Dr. Mumtaz Ibrahim, M.D., Chief Medical Officer of Molina Healthcare of New York

My Journey as a Parent of a Special Needs Child

My Journey as a Parent of a Special Needs Child.

My son was born on a sunny May afternoon. It was the most glorious moment of my life and my wife’s. The next 18 months, we were thrilled by each of his milestones: learning to walk, uttering words then stringing them into sentences, waving goodbye in the morning and jumping into my arms at the end of the day. Then, at about 20 months, the skills he’d mastered started eroding. We retaught him what he had forgotten, and he would learn again. But just as quickly forgot once more. His pediatrician suggested we test his hearing. It was perfect. But the head of audiology asked: had we considered autism?

 

What is Autism Spectrum Disorder?

According to the CDC, an estimated one in 59 children has autismAutism spectrum disorder (ASD) is three to four times more common in boys than girls, and many girls with ASD exhibit less obvious signs than boys. Autism is a lifelong condition.

Several conditions that were once diagnosed separately—autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), Asperger syndrome—are all called autism spectrum disorder today. It is a developmental disability that can cause significant social, communication and behavioral issues. The learning, thinking, and problem-solving abilities of people with ASD range from gifted to severely challenged. Some with ASD need a lot of help in their daily lives; others need less.

 

Signs and Symptoms

Children or adults with ASD might:

  • Not point at objects (for example, an airplane overhead) to show interest or not look where another person points
  • Have trouble relating to others or have no interest in them
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own
  • Prefer not to be held, or cuddle only when they want
  • Appear unaware when people talk to them but respond to other sounds
  • Be very interested in people, but not know how to interact with them
  • Repeat or echo words or phrases said to them, or use them in place of typical language
  • Have trouble using common words or motions to express their needs
  • Not play pretend games (like pretending to “feed” a doll)
  • Repeat actions over and over
  • Have trouble adapting to changes in routine
  • React unusually to smells, tastes, textures, temperature, appearances or sounds
  • Lose skills they once had (like using language)

 

Diagnosis

Since there is no medical measurement, diagnosing ASD can be difficult. Doctors look at the child’s behavior and development to make a diagnosis.

ASD can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older—and don’t get the early help they need.

 

Tips for Parents

When a child has autism, it can be stressful and time-consuming for the whole family. Paying attention to everyone’s physical and emotional health is important. Remember to:

  • Learn as much as possible about autism spectrum disorder
  • Provide consistent structure and routine
  • Connect with other parents of children with autism
  • Seek professional help for specific concerns
  • Take time for yourself and other family members

Many advocacy organizations provide information, resources and support. But every parent must advocate for their child or no one else will. Early intervention is the key: the sooner you have a diagnosis, the sooner you can get your child what they need.

Whether for education, transportation or support services, my wife and I have been passionate advocates for our son. Almost 29 years later, he is 6’1” with a smile that can light up any room. Beloved by all who know him, he is no longer verbal. But his understanding is near perfect and he communicates by leading us to whatever he needs. Our son has traveled with us to China, Japan, Spain, Pakistan and Mexico. On planes and in crowded areas, he tends to cover his ears or reach his hands out to strangers—but we find that people are understanding and kind all over the world.

Category: Children / Mental Health