Ema’s class had to complete a Passion Project this year in grade 7. I honesty don’t know a lot about the assignment but I know Ema picked Women in Sports. We are surrounded in our community and in our family by so many exceptional female role models in hockey, I was not surprised to hear her main topic. Ema made it pretty clear from the start her passion is bobsled and skiing and not hockey. I am sure part of her love for other sports is because she got sick of watching hockey. We dragged to every hockey arena in our province for years, even when she wasn’t feeling well. Maybe it is because she just wanted her own “sport” to cheer for or maybe it is as simple as she says, “she loves the speed and the pressure on her body” of bobsled and downhill skiing. Ema has always been fascinated with Bobsledding and downhill skiing. With her physical disability, sports are not always the easiest to take part in but she loves getting the chance to try them and learn about them.
Ema lives with Rett syndrome and projects can take her a lot longer to complete then others because of the processing time she requires. She is just as smart (or smarter) then you or I, she just needs time to process and communicate it. Most of the time when in public or with people who don’t understand Rett syndrome, this processing time is considered to be her not knowing or understanding at all. This couldn’t be farther from the truth.
We have developed a great working relationship with Ema’s school over the past 8 years. They understand Ema and Ema’s journey with Rett syndrome. It is not to say we don’t get things wrong or haven’t had our ups and downs, we have and do, but her core group gets Ema (and me). They understand she is like any other student and just wants the opportunity to learn and be included. The school understands that for Ema to be successful she needs to be able to communicate. Ema always has a form or two of communication with her (core boards & flip charts, iPad, eye gaze…etc) and works hard to learn. (except in math – she doesn’t like math) We all understand that we are learning together on this journey – each step is new to us all.
It was no surprise that Ema was doing a project, she is expected to do the same work as others in school. The school expects it and so do we. She does require extra time for projects because it does take her way more time to process and reply. Ema got sick in the middle of this project and I had forgot all about it. Yesterday I was called into the school because Mrs. Green wanted to show me Ema’s project. Ema had presented earlier that day with her group to her grade 7/8 class. They video taped her project so we all could see it.
Like I mentioned above, Ema did Women in Sports – Bobsledding and it wasn’t a surprise because we talk lots about female role models in our home. Her surprise for everyone, including her group, was that she got the opportunity to do an interview in advance with the one and only Kaillie Humphries, 3 Time Olympic Medallist in Bobsledding. It took me a few seconds for me to realize what was going on. It was a HUGE surprise to see that Ema got the opportunity to interview Kaillie Huphries and another huge surprise that Ema actually did an interview with a stranger!! To see the smile on Ema’s face was so precious. The confidence I saw in her was priceless. She was so proud of her work.
Kaillie agreed to do an interview with Ema on Zoom. She learned about Ema and Rett syndrome in advance from our school resource teacher. She gave the school a question for Ema in advance too so Ema could think about and process her answer. When you have a disability, you are constantly having to prove yourself and it can be very hard on your self esteem. Answering in a crowd or for a stranger can make Ema’s apraxia worse. Ema has worked really hard to build up her confidence with friends and in public so we do whatever we can to continue building that confidence.
Ema was so proud to do this interview and keep this huge secret from everyone! Kaillie was so supportive and had words that Ema could relate with. Ema was still smiling the next day after reviling her project and special guest.
We are so proud to have a group of people who believe in Ema and who continue to give Ema opportunities others might not give her. We want everyone to see Ema like we do, a regular kid with the same hopes and dreams as anyone else. We want that for everyone who lives with a disability. We thank all the families and those living with Rett who continue to push for all of us and give us hope and give us the strength to push forward.
We can’t thank the group at our school enough for giving Ema the chance to be Ema. In a perfect world, all children would be given the same opportunities to an education but that isn’t reality for those with disabilities, not yet anyway. Thank You Mrs. Green and Ms. Lee for believing and working through some very tough scenarios on this journey and for helping us figure out how we can fit Ema’s education in to system that isn’t always inclusive. Mr. Arnel for always making sure Ema gets to take part in every sport and encouraging her to try and work harder. Ms. Westra & Mrs. Hall for pushing and working so hard daily to let Ema be herself and for giving Ema the same opportunities as her peers. Melanie, Ema’s school SLP and Jacklyn, Student Services Administrator Red River Valley School Division, thank you both for helping make sure Ema has the tools she needs to succeed and for going along with “thinking outside the box”. We as parents with children with disabilities have to continually push to have our children included and accepted. I thank you for being that group that believes anything is possible and who accepts Ema for her strengths!
A huge THANK YOU to Kaillie Humphries for taking the time to do this interview with Ema, to learn about Ema’s journey with Rett syndrome and to give her words of encouragement. The confidence and pride Ema showed in doing this with you is something we will all cherish. This goes way beyond an interview for Ema. Thank-you, what an honour and privilege.