A few weeks after my daughter Reagan was born, I started noticing strange movements when I watched her. We identified these movements as seizures at six weeks old, which quickly increased to nearly 60 episodes a day.
Reagan underwent a full craniotomy with resection of the seizure focus. She was diagnosed with cerebral palsy with limited use of her left side, called hemiplegia. As a result, Reagan has limited movement on her left side and has been in occupational physical therapy her entire life to learn how to do daily tasks that kids her age can do independently.
I am a mom and primary caregiver of children with special needs — Cole, 11, and Reagan, 12. I’ve always had to counter my instinct to nurture by letting my caregiver role encourage them to do things independently. For example, I remember carrying Reagan’s backpack for her on her first day of preschool because I felt she couldn’t carry it. As I walked away, I wondered if she was ready to go to school, but she came out at the end of the day wearing her backpack and that taught me never to doubt her abilities.
November is National Caregivers Month, and according to the Family Caregiver Alliance, 85% of caregivers are family members, like me. As a caregiver, I’ve learned that my role is to help identify challenges and advocate for the resources that could help my child live her fullest life as independently as possible. But I also have other responsibilities. To strike a balance between caregiver and my career, I rely on experts for support.
For instance, Reagan participates in the ComPASS (Community Participation And Skill-building Services) program at Brain Injury Services (BIS), which focuses on helping clients develop practical skills for everyday life. For example, her therapists found a clamp to hold her hairdryer so Reagan could brush her hair with her dominant hand and dry it more effectively.
Through our experiences, we developed a phrase, “I will try, but I might need help.” I give Reagan authority to make her own choices, and as her caregiver, I troubleshoot, “What is the challenge, and how do we fix it?” BIS helps me optimize Reagan’s capabilities and helps her become confident in her abilities. The partnership between a caregiver and services like BIS is critical for success for people affected with brain injuries and their families.
Being a caregiver takes an emotional and physical toll on us. If you know a caregiver, remind them to take respite breaks, encourage them to accept support from organizations like BIS and be open to new and different ways that can help their loved one live their fullest life. As caregivers, we try to do our best, but the reality is we cannot not do it alone and often need help too.
Danielle Bischoff is a mom, caregiver and business consultant. She lives in Sterling with her husband and two children.