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Elijah and Crumpet

חסר תרגום בשפה עברית. מוצגת שפה אנגלית
תסמונת דאון

Elijah and Crumpet

Elijah and Crumpet - Behind The Seams

Elijah is nearly 10 years old. Crumpet is kind of also 10. I’m Dad and I’m 46, in case you were wondering. Most people know me as Crumpet from Elijah’s YouTube channel: Elijah and Crumpet. It was meant to be a secret, but in our first ever show, Elijah couldn’t resist being the one in charge and letting everyone know the truth. Now it’s a regular feature of our closing scenes – Elijah pulling off Crumpet and attacking Dad!

Let’s go back 10 years … we found out during the pregnancy that our baby had Down syndrome. We decided not to do a blood test and nuchal fold test that looked for markers of Down syndrome; we both felt that having a child with Down syndrome would be something that we could cope with. We already had a 5 year-old son, Thomas, and he was very excited about having a younger brother or sister.

We did go for an ultrasound scan at around week 28 and it suggested markers for Down syndrome or perhaps another chromosomal abnormality that may require palliative care for the baby. We decided to have an amniocentesis and it confirmed Down syndrome. We were happy with this outcome because it was not a life-threatening abnormality. We got as much information as we could and were really looking forward to welcoming this little baby into our lives.  

In some ways it was life-changing, but then in other ways, we just got on with having child number two. We spoke with people who had experience of Down syndrome and used every available means to become as knowledgeable as possible. As Elijah grew we went through the therapy sessions and additional appointments, knowing that we had to give Elijah every opportunity to be successful. 

Could we have imagined that by the age of 10 Elijah would be championing his disability by having his own YouTube channel, Instagram and Twitter accounts? Or appearing on Australian television? Or having an international following? Not a chance!  What we did soon realize very early on was that inclusive education was important to us. It became our goal to have Elijah attend a regular school like his big brother Thomas (who is 5 years older). We attended a Social Role Valorisation (SRV) course which cemented our high ambitions for Elijah, including becoming a Scout, being a school and even University student, being a reader, a musician and a speaker of a foreign language, plus ultimately having a job. Mum has a teaching background in language and linguistics and primary education. She took Elijah to music groups and developed literacy materials which were freely available from all over the world. She learned Auslan and Makaton to teach and communicate with Elijah in sign. She also developed fine and gross motor plans and learned how to use a speech generating device to teach Elijah in case he wasn’t going to speak.

We had done baby signing with Thomas, so we started early on with Elijah. As it turned out, he was non-verbal right up until his first year at school in Prep. Elijah showed that he had a great memory, so we made the most of that with reading and sight words. Elijah used his speech generating device in kindergarten. His friends were blown away when Elijah gave a presentation we had pre-loaded into it, as they had never heard his voice. The computer's ‘Australian boy’ voice became Elijah! What mattered most was that he was able to engage with others and really be a part of the group.

Music and dance have always been present in our home, so Elijah learned to play with instruments and sing. Thomas does hip hop and Mum can dance well too (not me!) so Elijah has picked up their moves and practices with or without an audience! Now Elijah attends a regular state school where he is in a regular class and has some additional hours of teacher aide assistance. He follows a modified curriculum and he is encouraged to take part in all school activities. He wins reading and class awards in assembly and he is seen as a capable learner. He knows all the teachers’ names and he is very popular amongst his peers, who love the fact that he has his own YouTube channel!

So how did Elijah and Crumpet come about? Mum first used a monkey puppet to encourage Elijah to learn words and sounds, which was very successful. I was always impressed at how Elijah would interact with his puppets as if they were living things, even if he sometimes did a double-take at me trying to be a ventriloquist! Elijah always tries to copy Thomas, which has been really good for his development. When Thomas started talking about YouTube and becoming a YouTuber, Elijah was quick to declare that he was going to be a famous YouTuber too. This was the seed for the idea that grew into reality. Embracing social media technologies seemed like a good way of showcasing Elijah’s strengths and as we thought about it, there were many other benefits: from our SRV training, I knew that being a YouTuber was a highly valued role amongst his peer group; Elijah would have to practise content, which would assist his learning; the show would allow others to connect with Elijah, as they would learn about his life and have something to talk about; it might assist other parents of children living with Down syndrome, or anyone seeking information about what life was like living with Down syndrome.

We googled ‘how to start a YouTube channel’ and the advice was to just get started, so we did! Filming started with an old camcorder on a pile of books and I had a month free trial for editing software. The feedback was positive and I hoped that friends were not just being kind, but as time went by we developed content and slowly the channel took shape. A new camera, tripod, green screen, editing software and many hours later (nobody told me it takes 4 hours for a 5-minute edit), we were fully immersed in Elijah and Crumpet. Elijah and I discuss each show, sometimes writing out the plan. If there is reading involved, Elijah has to practise until he is confident as it is important that we show him in the best possible light. We do a lot of ad-libbing as Elijah will make a funny statement and we then follow that lead. There is such a lot of content in the pipeline that it is hard to know what to do first. We are trying to appeal to a wide range of viewers, so we might do a chocolate video and then do a Japanese language learning video, then dancing, then wildlife, then travel.  

Filming takes the least amount of time. Promoting and networking on social media takes more time and editing takes the most. We were doing daily uploads in order to get the content out, but we are now concentrating more on Instagram, since this has a lot more engagement. We have a strategy to build both channels. While subscriber numbers are not a priority, it’s always nice to see a show of support when someone clicks Subscribe (please come and check us out)! Ultimately, more followers means more advocacy and influence, which is a real motivator. It means a lot when someone messages to say that they were feeling low and our show picked them up. I often get woken up by Elijah wanting to do a show, or when I get up I find Elijah in his room reading the words to a song. He really wants to practise and do a good job. It has accelerated his learning and given him some real goals - you just have to watch Elijah rattle off 30 words at high speed in Japanese to see what he is achieving! The routine we have is a good one and it’s a fun activity for us to do together – great ‘father-son’ time!

We have connected with some great people from around the world in the YouTube, Instagram and Twitter communities and also the world-wide Down syndrome community and there are many exciting future opportunities which have opened up for us. We are making shows of interviews with other children living with Down syndrome from around the world. We have a world-first international art project using 21 acrylic on canvas paintings. We are seeking supporters who wish to be involved (all you need is a video camera, or even use your phone). In addition to Elijah's emerging work as an artist (see our hashtag #NoSmallArtist), we intend to publish a book and also produce educational material for an international audience.  We also have several TOP SECRET international projects, aimed at tackling discrimination, which we would love to tell you more about, but ... ! 

With over 130 shows uploaded, we are nearing 1,000 subscribers on YouTube and we are on track to reach 10,000 followers on Instagram by the end of 2019. We value your interest and the momentum it creates. With your support, the Elijah and Crumpet show might just go on for longer than we expected … watch this account!

Please follow us:
Instagram @ElijahandCrumpet
Twitter @ElijahCrumpet
YouTube https://www.youtube.com/c/ElijahandCrumpet

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