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  • maryepritchard

People sometimes forget to include you because you are not speaking

Jan, NSW, 24 hours speechless

How has your life been touched by Rett Syndrome?

I work as an SLSO in a public school in NSW. This year I began supporting a girl with Rett Syndrome as she started kindergarten in a mainstream school setting.

Why did you decide to take on the speechless challenge?

Last year when I was told I would be supporting a student with Rett Syndrome, I researched information about it and joined groups on Facebook in order to find out as much as I could. I wanted to know things like what parents wished educators knew, best and practice in supporting students with Rett Syndrome, so that I could have some understanding of how I could support my student to the best of my ability and for her to have the best possible experience of school.

Almost twelve months on, taking this challenge seemed like natural extension of this, enabling me to gain some further insight from the perspective of a person with Rett Syndrome and as a result be a better support worker and advocate for my student in the school setting. I also wanted to raise awareness in the community too.

What was the hardest part of it for you?

The hardest part for me was not being able to talk out loud when I was thinking things through, not being able to write down ideas or express complex thoughts and the busyness of my mind. I also missed being able to talk to my cats.

Was any part of it easier that you thought it would be?

No. I knew it would be difficult, but it was harder than I had expected.

What did you learn about Rett Syndrome through this experience?

I gained an insight into the impact that an inability to communicate easily has on your relationships, your independence, and people’s assumptions about what you know or are capable of. I found that people will always try to fill in the silence, will not accept or will override your first choice of something, or they will sometimes forget to include you because you are not speaking. I also learned how difficult it is to make yourself understood and how frustrating this can be. For me this also explained why music and painting are so important to many of people with Rett as a means of expressing themselves.

Any advice for someone considering taking on a speechless challenge?

Remember, if you start to think you might not be able to complete the challenge, it’s only for one day, people with Rett Syndrome live this. I did my challenge on a quiet weekend, which I definitely made it easier to complete.

Next year I’m thinking of challenging myself further by interacting with more people. Covid made that difficult to do this year.

I would recommend taking this challenge. I learned so much and I intend to do it again next year. Most of the staff at the school made donations and just by my taking the challenge it started or expanded the conversation about Rett Syndrome.

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