Throw out the expectations playbook and visit Wonderland

by Laura Badmaev, ARRE Foundation founder and chair

One of the worst things you can say to a special needs parent is “I’m sorry”. It is based on the assumption that everyone should have the same expectations for the way their lives should be lived and that anything different is a tragedy. I am asking you to throw out the expectations playbook and think about the world differently.

According to Global Genes, if “all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country”. Let’s call this special country Wonderland and let’s imagine that all of these rare disease families live there. Instead of apologizing to the family, I would encourage you to inquire and learn more about Wonderland – What is it like to live there? What types of things do you do? What do you like to celebrate? Instead of focusing on all the things that these children cannot do, reposition your mindset to what they enjoy and create inclusive experiences with them.

Our culture, traditions, and values influence the series of experiences that comprise our lives. While those experiences of people in other countries may seem foreign to us, they are just different – not wrong. In the same way, the lives of those with rare syndromes is different but special and unique for each family. While families who live in different regions of a certain country may have cultural differences, families who have children with the same syndrome have varying experiences that can be related to the large spectrum of clinical presentation within the same syndrome.

I can tell you from experience that Wonderland is a very special place. We have people from all types of backgrounds and from many countries. We have learned to appreciate the simple things in life and celebrate the special moments. We have overcome many battles and continue to persist in the face of adversity. Our children have helped us to find our voices, become stronger, more patient, and more resilient. We have realized what is most important in this life that these children provide unconditionally – LOVE!

As the Beatles once said, “All you need is love. Love is all you need.”