Developmental Disabilities

An Opportunity for Resilience

Parenting a child with a developmental disability comes with unique joys and stressors. Parents of children with developmental disabilities experience typical developmental concerns that all parents have, such as feeding concerns and changing sleep routines. However, they must also navigate developmental challenges associated with a child’s disability. Developmental disabilities reflect a broad range of language, behavioral, physical and learning problems such as Autism Spectrum Disorder, Down syndrome and Cerebral Palsy. The Center for Disease Control and Prevention estimates that 15 percent of children aged 3 to 17 have a developmental disability. The prevalence of developmental disabilities among US children is increasing; for example, about 1 in 88 children are now identified as having Autism Spectrum Disorder.

Substantial research indicates that having a family member with a developmental disability can lead to a host of positive outcomes for parents and siblings, despite experienced challenges. Mothers, fathers, grandparents and siblings consistently report stories of how their family members with disabilities bring them a unique source of joy, richness, perspective and purpose. Many families say, “We are blessed.”

In a recent study of parents of children with Autism Spectrum Disorder, Dr. Bayat of DePaul University found evidence of family resilience. Resilience is described as the ability to withstand hardship and rebound from an adversity, becoming stronger and more resourceful than before. Dr. Bayat’s study reported that 67 percent of parents described their family as having been strengthened by having a child with Autism. Family resilience resulted when parents were able to find meaning in their situation, maintain an overall positive outlook, and rely on their spiritual belief system.

In our Oklahoma-based research with families of children with developmental disabilities, we have also found that many parents and siblings demonstrate substantial resilience. Their stories help to paint a more complete picture of how persons with developmental disabilities enrich our lives and increase our capacity for resilience. Our hope is that parents who have children with disabilities will find ways to use these strategies and examples in their own families, no matter what circumstance they are facing.

Strategies, along with quotes from Oklahoma families, include the following:

1. Find meaning or purpose in your circumstance.

This often happens when parents or siblings recognize the numerous ways in which having a family member with a developmental disability has changed their lives for the better.

As trying and difficult as it has been, I wouldn’t trade any of it. I would advocate fully that your life is more enriched and more rewarding and more satisfying when you have a child with a disability.

2. Affirm your family’s strengths and maintain an overall positive outlook.

Having a child or sibling with a developmental disability can help us to become more compassionate, less judgmental, and find a more balanced and healthier life approach.

I know that she [spouse] and I run the range of emotions, but holistically it’s just one of those deals where you keep at it, you keep trying, and you don’t give up and you keep working to try and find the best scenario and the best solution and the best way to find success.

3. Rely on your belief system and spirituality.

Our belief systems and spirituality can help to reframe our perspectives on disability. For many families, this helps to create a sense of well-being and generate an acceptance of disability as part of life.

We have truly been blessed with this exceedingly happy, independent, affectionate and motivated child, and we believe that God indeed has a much higher purpose for our family. As every parent of a child with special needs knows every day is a challenge – and you have to believe that God will show you the way. But, it is still an incredibly difficult task that comes with many highs and many lows, but always an honor to have been “chosen.”

* This Evidence-Based Parenting article was partially supported by funds from the George Kaiser Family Foundation awarded to the Oklahoma State University Center for Family Resilience.  Jennifer Jones is a visiting Assistant Professor in the Department of Human Development and Family Science.  She can be reached at jennifer.jones@okstate.edu or 405-744-8348.