It’s hard to believe that it has been more than nine years since Parker and Allison were diagnosed with Fragile X syndrome. It’s harder to believe that there was a time when my family and friends didn’t know what FXS or a Fragile X-associated Disorder was—and neither did I. It’s hard to remember what it felt like to be completely unaware of this amazing world that we are now a part of. Don’t get me wrong, there will always be a part of me that wishes I had no reason to know. But I do know. I know the meltdowns, hyper-arousal, speech delay, aggression, cognitive impairment…and the innocence, humor, intelligence, understanding, compassion and love…oh, the love. Within me, I’ve discovered passion, determination, and hope.
The passion within is for a life outside myself, a chance for my children to experience, to grow, and to be independent. For this, I need for Fragile X to be understood by everyone, not just in our own lives, but in the larger world as well.
A day doesn’t go by when my children aren’t faced with challenge—even Allison, who is much less affected than Parker. For Parker, there are multiple challenges each day, each hour, and often each minute. I’ve been described as “determined” by many people over the past few years, but my determination pales in comparison to what my children put forth each day doing the things many take for granted.
And within it all, there is the hope. To me, hope is something that’s inside of me, like a wish—but one that can’t come true until I use my determination and passion to make it happen. I had hope that Parker would have friends, that he would do things with his peers. When he was in second grade I stood in front of his class (with a lump in my throat and huge tears streaming down my cheeks) and for the first time to a group of children said, “I want to tell you about Fragile X” . I had to do this for Parker, to explain for him the things that he couldn’t. I had to do this for the other kids because they needed to understand so they could cross the barrier to befriend the boy who couldn’t talk and who was given to hiding under his desk. Together for the next hour we made lists on the chalkboard of things they liked. We went through each one, guessing which ones Parker would like and which ones he wouldn’t. For the first time, they saw how much Parker is just like them. We also talked about why he’s different. For each thing he wouldn’t like, I explained why.
I then asked, “Do you notice anything different about Parker?” Although the looks in their eyes said “yes,” not a single hand was raised. I let them know it was O.K. to notice differences, it’s O.K. to ask about them, but it’s never O.K. to make fun of anyone for being different. I explained what FXS is, how you get it (and how you don’t), how it affects both Parker and Allison. I explained that just like them, Parker wants friends. Then I told them how to be his friend. When I left that classroom, I left a group of remarkable children who would change my son’s life—and mine.
This was the start of many friendships that have lasted for years. It was the start of a hope I could give to other parents through presentations and podcasts. Hope that I could share, and a voice I could help them find to make hope happen.
With Allison by my side we talk to her class, too, answering questions about her and Parker’s struggles. She faces the additional struggle of dealing not only with her own FXS but her brother’s, too. Her friends need to understand how FXS affects Allison and how to accept and understand her brother. Each time I come to her class, it is her choice to stay or not as I talk. My own hope is that I am not only building understanding of her brother and a syndrome that affects them both, but also helping her to become a self-advocate who will one day be her own strong voice and possibly…a voice for her brother.
I still speak to Parker’s class each year, and continue to be amazed with this group and how they have helped Parker. They know and accept his differences and challenges, and they stand by his side to meet them head on. They have become his cheerleaders, his coaches, his tutors, his voice, his encouragement and—most importantly—his friends.
This year marked a new milestone for Parker and his friends: school dances. His friends hoped he would go as much as I did. On the night of the first dance, he managed to make it to the school but not inside. The second dance, we had pizza first with his friends, then he went inside and watched from the safety of the wall. The third dance, pizza with friends and he stood on the dance floor. By the fourth dance, he was begging to go, and after pizza, I watched as he and his friends went off to the school full of excitement. At the end of the night I was greeted by Parker and his very excited friends—all of whom couldn’t wait to tell me that not only did Parker dance, but he danced with a girl! A sweet and beautiful girl who has been his friend over many years, coming to birthday parties, helping him at school. On this night, she extended her kindness and friendship and danced with my son in front of all their friends. That night as I tucked Parker in bed, tears streamed down my cheeks as I realized…We did it, we got him to a point I had only hoped he would reach.
Hope never goes away. I can’t predict the future—but I can hope. Passion and determination have helped make that hope our reality. Which is why I don’t just hope things will be better—I know they will.
contains a podcast, which coupled with the PowerPoint slideshow, that is designed to give the skills and confidence to present the topic of Fragile X syndrome to their your child’s classmates. Reaching out to students is a great way to provide a personal understanding of Fragile X along with facts about what it is. This understanding of Fragile X and disabilities in general will help foster friendships and compassion.