Raising a neurodivergent child: Challenges and milestones

When I took a master of arts class on sociocultural issues in education at the University of the Philippines (UP) Diliman, I learned from a classmate that a parent of a neurodivergent child could spend nearly P100,000 a year on therapies alone.

That computation did not hit hard until I became a parent of a child diagnosed with autism spectrum disorder 10 years later. As a middle-income citizen, I know that raising a neurodivergent child is expensive and not easy.

In the Philippines, we have a limited number of developmental pediatricians who specialize in assessing neurodivergent children. Some of us need to wait for around six months for our first and even follow-up checkups in government hospitals.

When my child was referred for occupational and speech therapies, we checked a directory to locate nearby therapy centers. To our surprise, the rate for each session starts at P900 per hour. Even more shocking is the difficulty in getting slots, as many parents were trying to enroll their children in therapy sessions.

After a month, we finally found a therapy center referred to us by a deaconess who had a student attending that center. Before the therapy session commenced, we paid assessment and reservation fees. At that time, my wife and I were both working, so we had to adjust our schedules so that either one or both of us could accompany our daughter to the therapy center.

At first, we only had two occupational therapists. First, it was harder to find speech pathologists. It is only recently that speech pathology has been professionalized in the Philippines, and it was only UP Manila that offered this course. Second, we have a limited budget to afford three sessions a week.

Although it was expensive, we confirm that the therapy sessions have paid off. We witnessed gradual improvements in our daughter’s behavior, social skills, and speech. We later secured a slot with a speech pathologist. We spend nearly P15,000 per month for three sessions per week, including transportation and allowances.

When I shared our experiences in my Ph.D. class at UP, my classmate and friend commented that we were fortunate. She works as a special education teacher in a school in Metro Manila, and she shared that some of her students cannot afford therapy sessions. Some parents patiently apply for a slot in government hospitals, but they get it only once every six months. Based on experience, such a limited frequency may have only a minor impact. As a public school teacher myself, I know that some parents do not have the time and money to have their children assessed after being referred.

After almost two years, my wife filed an indefinite leave from work to focus on raising our 5-year-old daughter, who is now enrolled in a public school. It was a hard decision because she loves her work so much, and it is also a source of income. But we know that our daughter matters more than anything else. Fortunately, her first year at school brought even more milestones.

We meet other parents of neurodivergent children from time to time, from all walks of life. We share the same battles almost every day. We appeal to the government to offer accessible and affordable services for neurodivergent children. We need laws that will serve their needs and rights. It is also hard to find free playgrounds or parks in every city. Some existing laws should be implemented more efficiently.

Above all, we dream of a nation and community where our children can live and play with others. We hope that our schools will help us to prepare them with the necessary life skills they need now and in the years ahead.

Khristian Ross P. Pimentel,
kppimentel@up.edu.ph

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