I welcome you all back! I haven’t posted to my blog in a long long time. We take many different directions as we travel down this journey with Rett syndrome and in life. I found myself overwhelmed and needed to take a step back. My intention now is to post more regular, but you never know how things will go. Thank you for taking this journey with me.
I have a few projects on the go right now. I will gradually fill you in on all of them but the first one I am writing on is something really important to our family.
In May I threw a surprise 50th birthday party for Lionel. He never asks for anything and just keeps working to make sure we all have what we need, never complaining. I wanted to do something for him as a way of saying Thank you. We managed to surprise him by holding a meal at Roxy’s, our local restaurant, surrounded by 80 friends and family. He really appreciated seeing everyone there.
Although all went really really well, there was one part of the evening that was difficult for him and our older children.
Most people either walked around or by Ema and never acknowledge her. This is something that never happened to our other four children.
Lionel and the older kids found it really difficult not to take personally, specially when it was all family and friends. I have become numb to it as I see it on a daily basis.
We have learnt to take a lot of things in stride after having Ema diagnosed with Rett syndrome. We understand people don’t know what they don’t know or understand. Some are scared to say or do the wrong thing, so they tend to avoid her at all costs. Even though we do understand, it is still one of the most difficult things for us to deal with and reason with.
For those of you who don’t know much about Rett syndrome, understand one thing …Ema understands everything, likely more then both you and I, the issue is the output. This goes for anyone who has been diagnosed with Rett syndrome.
You can speak to her like anyone else and she understands. For some odd reason though when a person can’t voice their words like you or I, they are assumed to not be competent. So, in hopes of helping Ema communicate better we are going to teach people how to model and engage with her, using her way of speaking.
We know by educating people and raising awareness, we will change things for Ema and all others living with disabilities.
If you speak with me you, you will often hear me say Ema is surrounded by wonderful people. Two of these people, Ema’s school Speech and Language Pathologist, Melanie and her school resource teacher Jona, have agreed to help hold a fun information night on AAC (Augmentative and Alternative Communication) and Rett syndrome.
“Rett syndrome is a processing disorder; it’s not the input that’s a problem, it’s the output. Everyday she fights her biology to make choices” – Army of Us
By learning how to speak using Ema’s communication system, you will be ready to dive in and ask her questions, play a game, or tell her what you did on the weekend. The communication possibilities are endless! The more we all speak with Ema using her communication system, the more we all help her learn and grow.
September 12, 2019
Oak Bluff Community School
There will be a brief introduction to Rett syndrome, but the AAC part will apply to anyone who is nonverbal. The evening is planned to be an hour long and be full of hands-on learning opportunities (with great hand-outs to go home)!
This will be open to friends, families – aunts, uncles, grandparents, school teachers and staff, respite workers, aids etc. We ask that those who are nonverbal not attend. We are asking that they don’t attend so that people feel comfortable asking questions and learning. We know that Ema HATES being spoken about when she is present. It makes her uncomfortable and we don’t want that for her or anyone else. We want a SAFE environment for all.
We will have both high tech and low tech devices. There will be a maximum number we can have at once. Please message me at firstname.lastname@example.org or call 204-770-0210 to register.
I hope that you will all join us!