How incorporating new tools and interventions has helped our family

As my grandpa always said, “You need the right tool for each job.” Despite this, I always turn to the same tools out of habit when working around the house. My vise grip is almost always close, and I use it all the time. In fact, I often grab it to perform tasks it wasn’t designed for, such as using the side to pound in a loose nail.

My 11-year-old daughter’s diagnosis of Friedreich’s ataxia (FA) has often forced me to examine my toolkit for managing life. I evaluate what I’m using, what I’m forgetting to use, and what I have access to that might be beneficial. I recalibrate often as I balance effectively self-evaluating without becoming overly self-critical. The goal is progress and not impossible perfection.

As a social worker, I want to normalize the conversation about mental health. Shoring up our emotional well-being is always a good investment.

As a mom, I try to think through how to care for both of my children’s medical and emotional needs. I want them to build resiliency as our youngest faces a debilitating disease that affects the entire family. I also know that as parents, we’re juggling so much and cannot do it alone. We need help.

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Supporting the development of the whole child

Schools have pivoted over the years to incorporate prevention and resilience curricula, such as CASEL’s social and emotional learning or the zones of regulation. These help provide students with tools to face challenging situations and engage their internal dialogue and feelings in healthy ways.

Our elementary school adopted the zones of regulation system many years ago. We then created a “zone” in our children’s bedrooms with tools they identified as being helpful. They included things like kinetic sand, arts and crafts items, stuffed animals, comfortable seats, and spaces for movement and music. We wanted to capitalize on what was learned at school by bringing it home. That’s not just helpful for a child with a chronic illness, but for any child, or even an adult!

When we remembered to help our children use these zones — because sometimes we’d forget — it was incredibly beneficial. I even find myself keeping tactile items around for when I’m overwhelmed and need to ground myself. I do love kinetic sand.

After some self-assessment many months ago, I realized we needed more support or tools at the ready. We discussed this need with our medical team and concluded that occupational therapy (OT) would be a beneficial intervention for us.

Why OT has been beneficial

According to the American Occupational Therapy Association, OT “enables people of all ages to participate in daily living.” That can include how we get dressed, how we engage mobility devices, and how we process the daily struggles that can come with living with a disability or disease. OT can support people in processing and responding to various struggles and in building skills to maintain some independence.

Let’s be honest: Dealing with FA is incredibly frustrating. When declines occur or mastered skills are lost, it can be devastating. Add in a developing brain, and there’s a lot of space for emotional meltdowns. I need all the help I can get to navigate parenting well.

OT’s client base is not limited to the individual with the disability; it expands to their support system as well. A skilled occupational therapist can coach caregivers to assist clients in applying learned skills. Just like the hammer I forget to use when my vise grip is nearby, a skill that’s learned but not implemented isn’t beneficial. Our OT has helped me learn how to encourage my child’s use of new tools or skills in ways that make me less of the hovering mom and more of a partner in her development.

Taking a moment to reassess

As we bring this incredible year to a close, I encourage you to take a moment to reassess your toolkit. Who are the professionals on your team? What needs are being met, and where are the gaps? For me, this reassessment has required a better understanding of the various services that are available and how to leverage them. That might mean an honest and vulnerable conversation with our doctor and a referral to a new service like OT.

We travel best when we have the right supports within our reach. Sometimes that means putting down what’s comfortable and grabbing a less familiar but valuable tool.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.