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’s OK to notice differences, it’s OK to ask about them, but it’s never OK to make fun of anyone for being different. I explained what FXS is, how you get it (and how you don’t), and 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 to this day. It was the start of a hope I could give to other parents through presentations and podcasts. Hope I can share, and a voice I can help them find.
With Allison by my side we talked to her class too, answering questions about her and Parker’s struggles. She faces the additional struggles of dealing with not only 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’s 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.