Developing Resilience: A Mother's Perspective

The following article is taken from an article posted on an American Heart Association website. I encourage you to visit their site, news.heart.org, and the site strokeconnection.strokeassociation.org where this article written by Carol Dow Richards was first published. 

by CAROL DOW RICHARDS

Carol Dow Richards

“Your child has had a stroke.” Those words are hard to fathom — and just the beginning of a long road to recovery. It requires entire families to adjust to many challenges — and not just those faced by their child.

In 1995 when my son David had a stroke at 10, my first thought was one of denial. Surely, we’d be out of the hospital in no time and he would be back to normal. Didn’t modern-day doctors “fix” these things?

I learned, as time passed, that we were not to be out of the hospital for nearly three months. And David never returned to the “old David.” We now had the “new David” — a 10-year-old who could no longer read or speak, as he now had significant aphasia. He was in a wheelchair. His arm was limp.

He’d been in the gifted program — and now moved to special education. His heart — and mine — had been broken. Hopes and dreams changed on that dreadful day.

That was nearly 20 years ago. David navigated the course of puberty, depression, school challenges. Our family learned to manage on one income. His brother had to grow up fast — as I was rarely home for nearly three years — as we navigated David through intense rehabilitation. In some ways my husband lost his wife, as I was 100 percent a mom on a mission: Help my son. David went to therapy for the next 15 years.

Today, David and I volunteer at a nonprofit we started, The Aphasia Recovery Connection. We connect families dealing with the devastation of aphasia. We also have several Facebook group sites, including one just for kids with stroke and aphasia, ARC Kids with Aphasia (0-18), where we connect families, offer tips, and help others navigate the journey.

Every night as David fell asleep, I would whisper in his ear, “I am getting stronger, I am improving. I will improve day by day. I’m still smart.” He needed to believe that.

As I look back over those difficult years, I think there are three main pieces of advice I would offer parents.

First, learn the rights of students in the educational system. Students are afforded a free and appropriate public education in the United States. What was appropriate prestroke may not be now. David’s aphasia was so significant that by high school, he needed to attend a boarding school with significant therapy services for his aphasia. Had I not known the laws, I would not have known how to advocate for my son. Parents need to advocate for their child.

Breakthroughs in treatment

Earlier this decade, there was an attempt to investigate the safety and efficacy of the clot-buster tPA in children. Specifically, researchers wanted to test different dosages and define what is best for children. Unfortunately, the study was stopped because the researchers couldn’t meet the enrollment numbers. “Nonetheless, there are centers across the nation that are capturing children within those first few hours after a stroke and have successfully given them tPA,” Guilliams said. “So we are collecting that information, and we’ll learn from our collective experience.”

Outside the window of the acute event, Guilliams points out that constraint-induced movement therapy (CIMT) can be valuable for children. “CIMT is not a new therapy per se,” she said, “but we’re learning a lot more about it and how valuable it can be for one-sided weakness even years later. It’s very encouraging, because you’re never outside the window of when it can be beneficial.”

There is also new study of transcranial magnetic stimulation that indicates it may promote additional recovery.

David’s recovery is a testament to his mother’s dedication. Today, both Carol and David are devoted advocates for stroke awareness.

Second, maintaining self-esteem and hope is so important. Kids at school can be cruel — and it is easy for these kids to fall into depression and loneliness. Every night as David fell asleep, I would whisper in his ear, “I am getting stronger, I am improving. I will improve day by day. I’m still smart.” He needed to believe that. I often felt that maintaining David’s self esteem was really my biggest job.

Lastly, take care of yourself. I remember one day at the hospital looking into a mirror. Who was that woman? I thought as I realized I had stopped taking care of me. I was pale and lifeless. It was at that moment that I reached into my purse and added some color to my lips — and tried so desperately to put a bounce back into my step. This challenges you to your core — but you have to believe in resiliency. And believe that yes, you CAN do this.

Deep inside each of us, we are resilient. Children are resilient. Parents are resilient. And we can indeed adjust to the new “normal.” It may be painful, horrific at times, but each day, we need to lead. With strength. And courage. And set the example for our children. No matter what life brings.

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