I hope those facing Rett see there is an amazing community of people who are all on their team
Angela, ACT, 24 hours speechless.
Angela reflects on her Speechless experience, and what she learnt from it.
I liked learning Abigail’s language and she is one of my best, best friends - Amelia, aged 5
How has your life been touched by Rett Syndrome?
Angela: My daughter Amelia came home from childcare one day and told me that she had made a new friend who was exactly like her – she told me that her and Abigail look exactly the same and like the same things and with the confidence you can only get when you are 3, she announced that they were now besties. Since that moment, the girls have been great friends. I later learned that Abigail has Rett Syndrome. The girls are both gorgeous, clever, fun, cheeky and kind. Amelia started advocating for Abigail and shared her language with our friends and family, teaching others how to communicate differently. Our lives are richer for knowing Abigail.
Amelia's answer: I met Abigail when I was 3 years old. I think she was 3 or 4 years old too. The first time I met her was at childcare. I was a little bit scared because I didn’t know her, but then I cheered up when she started to be my friend. I loved playing with her when we were in childcare together and then our mums said we could have a playdate together. I liked learning about Abigail’s language. Abigail’s mum taught me how and then that meant I could talk with Absi and she became one of my best, best friends. My mum says that Rett’s is bossy, so sometimes it’s hard for Abigail to do what she really wants to do. That’s okay, because I can wait. I miss playing with Absi, when lockdown ends I want another playdate.
Why did you decide to take on the speechless challenge?
I love to talk but deciding to be Speechless for Rett Syndrome was one of the easiest decisions I’ve ever made. Being silent for 24 hours was really the least I could do to try to make a difference for Abigail. I hope that raising funds and awareness will help find a cure for Rett Syndrome, and I hope that Abigail and her family will know that there is an amazing community of people who are all on their team.
What was the hardest part of it for you?
The hardest part was not being able to give my opinion on things happening around me! It was particularly hard when my family were having discussions about what to do for the afternoon and I couldn’t contribute. And I found it hard to be quiet when they were all chatting around the dinner table - I felt quite frustrated!
Was any part of it easier that you thought it would be?
I played Connect 4 with my kids and that was easier than I thought it would be without talking. And I got more hugs from my kids than normal, that was an added bonus!
What did you learn about Rett Syndrome through this experience?
I learnt how frustrating it must be for Abigail when decisions are being made around her that she should be able to give an opinion about! It was also interesting to see that people tended to not talk to me because they knew I couldn’t reply, even though I could hear just fine!
Any advice for someone considering taking on a speechless challenge?
Just do it! It’s such an eye-opening experience and you get to spread awareness, raise hope and fundraise to help fight Rett Syndrome.