Providing tools to help my daughter self-regulate on our FA journey
Facing disease with fiery determination while learning to find peace within
“Mom, come look at Amelia! It’s hilarix.”
The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what I was witnessing. Her younger sister, Amelia, then age 4, was slowly walking around the table with a doll in hand. The swinging of the straight, synthetic hair was quite the juxtaposition to the short and thin locks of the girl holding her.
Long before Amelia’s Friedreich’s ataxia (FA) diagnosis entered the scene when she was 8, I knew I needed to level up my parenting game. From the moment she entered the world, we all bore witness to Amelia’s strong thoughts with a will to match. Amelia had a vision of the world as she would like it. Anything outside of this vision was met with a set face and possibly a rain of fury. If you told Amelia she couldn’t do something, it just cemented her determination to do it.
At the time, I didn’t fully understand the blessing of her personality. I didn’t grasp that the very characteristics making me grow as a parent would help Amelia face the symptoms of FA with a spirit that doesn’t give up. As someone who struggles at times to keep my emotions from running the show, I wanted more for my child.
At this point, I was about two years into my following of psychiatrist Bruce D. Perry. Perry, creator of the Neurosequential Model of Therapeutics, had a huge impact on me as a social worker. Once again, I brought my work home.
Learning to find peace within
When things break down, I always want to start with reasoning and building understanding. This step doesn’t work when a person is escalated, as their thinking brain has shut down. Perry’s approach teaches the three R’s — regulate, relate, and reason — and they must be done in order.
When Amelia moved into the foot stomp and red-faced response, I’d take her hands and make her walk around the dining room table with me. The first few times were met with fury, but as the laps increased, the noise decreased. Soon, with practice, Amelia would accept my or her father’s hand and tell me that she didn’t need to walk as we moved and breathed together. Practice makes progress.
Fast forward to the “hilarix” moment, when Amelia was walking around the table with her doll. She kept telling her to breathe as they did laps. Finally, they plopped down together in the corner. At this point, Amelia asked the doll if she was feeling calm, then began discussing the doll’s concerning behavior.
I realized that not only had I been helping Amelia calm down when she was upset, but I’d also been teaching her a new skill that she was practicing on her own with her doll. This development brought forth a stronger desire to teach her more tools and model healthy ways to deal with stress.
It also meant I needed to be open to admitting when I was the example of what not to do. It does happen from time to time, and Amelia will call me out. Parents aren’t perfect.
Since that time, Amelia has learned to connect with herself. I’ve watched with awe as she pauses and engages in a breathing exercise or disengages for a few moments to calm down. Sometimes she models for me what I need to be doing better, so I recalibrate my view. Part of that is honoring who she is as a whole person and seeing her clearly.
Beautiful girl, continue to find peace within. And when this disease comes to steal, bring that fiery and determined spirit I love and respect so much.
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.