“Disability is a word and not a lifestyle”: Our family's running therapy

Some people say that running is just about putting one foot in front of the other, for me is more than that. I began running when I was 14, I was mourning my brother’s death and I found comfort when I began running, then the civil war took over back in my country and running was my rescue again. I came to the US and I continue running, I began running marathons and I felt at home.

Years later I became a mother of two boys diagnosed with Fragile X Syndrome, that totally changed my life, my life was just about my kids Max and Marky. I stopped running, but deep inside I missed my running years. When my older son Max turned 13, he was obese and borderline with high blood pressure. Worrying about what could happen to Max I decided to buy a treadmill and motivate Max to get on it, it was hard at the beginning, the treadmill was not appealing Max’s attention. I encouraged him to take turns with me, we started with 5 minutes each, as time flew, few months later Max was able to do 30 minutes not stop!

Motivated by that I began running again, with the goals to race again, during my trainings I would daydream about my kids running with me, but thinking about some of the symptoms of Fragile X, I knew anxiety was going to be a major one to work around. Taking my chances, I began transitioning my kids into running on the streets, we joined a running club, it took so much behaviour modification, mainstreaming with the typical community is not that easy, social skills were being tested and many times my younger son Marky would have meltdowns. But giving up was not a choice, we kept the consistency and within less than 6 months my kids and I were running our first race together. It wasn’t easy, especially for my younger son, the stimuli was very high, but as we kept pushing the miles, my sons were very relaxed, happily and proudly we crossed the finish line, our first 10K challenging race was done.

So many elements have been the key for our success during our running: behaviour modification techniques, dedication, determination, motivation, discipline, patience and lots but lots of LOVE.

My older son Max has been running for over 6 years, my younger son Marky has been running now for almost 4 years, we do races together, we have been able to mainstream in the typical community, we have been able to deal and reduce anxiety, my kids have been able to improve their social skills, their poor fine and gross motor skills, their sensory integration issues, their self confidence, we pretty much live by “Disability is a word and not a lifestyle” and I must admit we are very much addicted to running, we cannot live without it, therefore giving us a chance to create a healthy lifestyle full of dreams and goals and that is why we run!


You can follow our running adventures on Instagram at @lacarredora65.

We would love to hear your stories! Contact info@fragilex.org.uk to share yours.

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