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Families Finding Strength
By Sharing Insights, Parents End Isolation
By Nancy R. Atwood
Each morning, I start the day with a cup of coffee and an e-mail box that overflows with messages from parents of pediatric stroke survivors. Anyone from Australia? Math struggles. Potty training — pulling up pants with one hand. Toddler treadmill. Bicep getting tighter. New seizure medications. Please help.These are only a few of the subject lines from the Hemi-Kids e-mail discussion group.
I still remember the first time that I found an online message from another mom whose son had survived an in utero stroke. For several minutes, I stared at the message Joni Stasiak had posted and then prayed that she would answer the message that I wrote back to her. I waited three days for her reply. I can’t explain what it felt like to finally connect with someone who might understand what it’s like to parent an early stroke survivor; what it’s like to go to daily therapies and wonder about the future.
Before finding Joni online, I felt very alone, having never met another pediatric stroke survivor family. It didn’t matter that I was in Texas and Joni was in Ohio, we connected and we’ve supported each other through what I like to call a roller coaster of a journey.Through the years, Joni and I slowly gathered other families, created a nonprofit organization to help them, and finally met in person in Georgia at a Children’s Hemiplegia & Stroke Association (CHASA) family retreat when our children were 6. Today, our children are 16 years old and they’ll meet again this summer in Alabama, along with more than 200other pediatric stroke family members.
As founder of the Children’s Hemiplegia and Stroke Association, I’ve spoken with thousands of parents of young stroke survivors. Along the way, I’ve discovered some helpful tips that parents might find useful.This first tip, finding others for support, is probably the most important.
Be Kind to Yourself
Find other parents who are experiencing this same journey. Whether you find parents online or in person, making that connection will help you through the daily ups and downs. And, know that it is OK to cry and feel sad for yourself and your child from time to time. However, if you or your child experience feelings of depression or sadness that don’t go away after two weeks, talk to your doctor or find a mental health professional.
Help Your Child Find His Passion
Whether it’s building a tower of blocks, playing sports, painting, singing or writing, your child has a talent. Helping him discover this talent will do wonders for his self esteem, which also helps his recovery.
Become the Play-Date Parent
Friendships don’t always come easily for our children. Be the parent who sets up trips to the park and outings to movies. One or two good friends will make a tremendous difference in your child’s quality of life.
Explain the Pain
Therapy can be painful. Your child needs some sense of control during the therapy sessions so that she doesn’t learn a pattern of feeling helpless. If an exercise is painful, explain that this will only hurt for a few moments, have her count to 10 and then let her tell the therapist to stop. It’s important for your child to have control of her body.
Hemiplegia in infants and children is a type of cerebral palsy that results from damage to the parts (hemispheres) of the brain that control muscle movements. This damage can occur before, during or shortly after birth.
Nancy R. Atwood is the founder of Children’s Hemiplegia & Stroke Association and can be reached at firstname.lastname@example.org.
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