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October is Down Syndrome Awareness Month

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Did you know that October is the internationally recognised Down Syndrome Awareness Month?

It’s a month which is chosen so that everyone can channel their energy towards social media campaigns and projects to raise awareness of Down syndrome.

So what have Elijah and Crumpet been doing?

Library Collaborations

We are very pleased to be able to announce that we have secured a deal to produce Book Number 3, working in collaboration with Logan City Council Libraries and the First 5 Forever team. The First 5 Forever team are dedicated to promoting reading in the first 5 years of life. Elijah and Crumpet recently filmed a video about using the library, together with Marnie (pictured below) from First 5 Forever. Thomas (Elijah’s big bro, who is going to Film School next year) filmed and produced the video.

It was great fun filming and we are just putting the finishing touches to the video before it’s released.

The book we are creating is still a SECRET, but the storyline is written and Andy Marshall will commence the illustrations, once he has finished Super Scout in the next few weeks.

We have newspaper coverage ready to go and we expect further opportunities to arise from these collaborations.

2021 Childhood Summit

Elijah submitted an application video for the 2021 Childhood Summit which is being held in Logan this month. He was chosen to be a speaker, so we agreed that he would make a video on his chosen subject, seeing as that’s his strongest means of communication. He will be talking about imaginative playground design.

We have been busy practising Elijah’s speech and this weekend we completed the filming (funnily enough, meeting 2 other Elijahs in the playgrounds we visited – one of whom is appearing with his sister in our video!)

Super Scout Update

Elijah and Crumpet also filmed their Super Scout video this weekend (it’s been a busy weekend!), so we are all set to launch several crowdfunding campaigns once this video is edited.

Working with Scouts Queensland is great, but we need to fund the illustration costs, so seeing as we have experience of crowdfunding, we thought we should make the most of it. We gain a broader reach on each platform we list on, so it’s really a case of ‘the more, the merrier’! We will set the target amounts very low to ensure that we can collect whatever we raise.

Andy Marshall is nearing completion of the illustrations, so it’s been a lot faster than the time we took to publish Motivate Man. We have got the foreword ready (by Possum, Elijah’s Priestdale Scout Group Leader) and we are writing a letter to Bear Grylls, Chief Ambassador of World Scouting, asking him to write the foreword to our second Super Scout book (Possum beat him to the first book … sorry, Bear!)

Our fundraising page is all ready on our website, with pre-order copies starting to sell now at $20 for a signed, limited edition copy.

So that’s enough news for October! It’s quite busy, but it’s been fun and we are continuing to sell copies of Motivate Man both through our website and through online channels. Our half price second copy deal is proving to be a popular choice!

Happy Down Syndrome Awareness Month!

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Super Scout

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Time for another Blog post, now that we have released news about the second book we are working on: Elijah and Crumpet – Super Scout!

Scouts Queensland are currently trialing our first book, Motivate Man, as a fundraiser so that we can get the logistics of it right. We will then decide how we can use both Motivate Man and Super Scout around the Scout network in Queensland, then get the rest of the country interested!

We will be providing the books at cost price and Scout Groups will then be able to keep the profits they make. All of this comes under the Scout’s Sustainable Development Goal 10 on inclusion and diversity, so it’s a great collaboration. Here is Elijah’s introduction video about the book:

Tea with the Governor

I was invited to attend an afternoon tea at Government House in Brisbane to meet His Excellency the Governor, The Honourable Paul de Jersey and his wife, Mrs Kaye de Jersey. I joined a large group of Scouts (youths, Leaders and management) and found these events happen because the Governor is the Chief Scout of the Queensland Branch. So it was great to network with the various Scouting personnel and I was able to give Mrs de Jersey a ‘Motivate Man’ book, upon which she had someone bring a copy of her book, ‘Gavel finds his place’, which is about the Vice-Regal dog, also a kid’s book.

Book 3 – still a secret!

We have since made some more connections and hope to get some press coverage soon, to coincide with the book launch … or launches. Did I say that we have also started on book 3? We can’t say too much at the moment, but the script is done and we are just waiting on the green light before we start illustrating.

Illustrating the books LIVE!

So if you would like to follow the creation process of Super Scout, please come and visit Andy Marshal and me when Andy does his ‘Sketchy Live’ on YouTube:

https://www.youtube.com/c/AndyMarshallForkInTheRoad

You can message us questions and we are normally on from 9.30 for about an hour (depending on kids sleeping). We discuss options, add funny things, trouble shoot and discuss a wide range of topics. Plus you hear our news.

2021 Childhood Summit

Elijah recently applied to speak at the Childhood Summit taking place in Logan next month, producing a 2-minute presentation on video. Well, he nailed it and was chosen, so we are now doing a 10-minute presentation about Playgrounds and Imagination. Should be good. If you haven’t seen it, you can watch Elijah’s 2-min application here:

That’s all for now,

Stay safe, Rob and Elijah and Crumpet 🙂

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The Power of Being Positive

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If you are not listening to Podcasts, I recommend that you have a listen! I only jumped on to learn about writing a book, self-publishing and crowdfunding. I am amazed at how much I have listened to and how much I have learned. I feel like I am at university again, or learning my role at work – it’s a good feeling to be filling up a new part of my brain and learning some new skills!

Crumpet knows how to listen!

I listen on my hour-long trip to work and either listen at 1.5x speed or 2x speed, since most people on podcasts take their time. It means I cover twice as much ground 🙂 I also recommend skipping the first 3 mins usually as they are just introductions. So I found some very good channels and I have listened to about 100 hours now, condensed into 50 hours.

There’s a lot of experience out there and the interviews with successful crowdfunders all talk about preparation. They also talk about ‘going for it’ rather than waiting until you are sure that the project will be successful. You learn as you go and you sometimes have to just try it out. You may fail, but if you don’t try, you will never know and you will never learn. You have to be positive.

I tested the site with the Art project, but there was little interest. Rather than seeing this as a failure, I learned a lot. The nervousness about what will happen when I press the launch button – it’s no longer an issue! I know that I will be bombarded with people offering me all types of services which I don’t need, so I am prepared for that too. I know that you have to have a product that people really want, so I hope that our book, Motivate Man, will be attractive to many.

Friends and family, and supporters, are great – they give words of support as they are meant to! But unless that converts into orders from people not connected to me, the project will end up being much smaller than it otherwise could be. So I am working hard on growing a community who are interested in backing this and future projects. Kickstarter is not just about raising money – the project helps create interest in the cause, which is to raise awareness for Down syndrome and disability. So if we end up with a larger community, it will be a success.

I have started late on this, so the focus is to be creative and find ways to generate interest. Giveaway competitions, media leads, word of mouth, engaging on Facebook – these are all helping, but there’s not a lot of time left, as you can see from the countdown timer on the left! But it’s going to be fun and I am up for the challenge. With your support we can do this. That’s the power of positivity!

Please join our News-e-Letter for tips and additional info about the book – all those who are in the email group (which is kept private and confidential) when the Kickstarter launches will receive a link to our first (unpublished) book: Elijah and Crumpet – World Famous YouTubers, read by Elijah!

https://elijahandcrumpet.wordpress.com/contact/

Have a great week, all the best, Rob

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Finally on Facebook!

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Well, we did it! We jumped through the burning virtual hoops and worked out how to get a page for Elijah and Crumpet on Facebook. Here is the link:

https://www.facebook.com/ElijahandCrumpetBooks

Now I am burning up time checking out groups on there, but it’s an amazing platform, so I’m looking forward to seeing what happens in that space.

The history of why we were not already on Facebook is quite simple – when I first tried to open an account with Elijah, he was too young. Then I had two faces in the picture (one being Crumpet), so it was blocked as it went against the guidelines. So the name Elijah and Crumpet was taken … by me! But blocked!!

Last weekend I researched what I needed to do. I finally worked out that I had to open an account with my name, then make a page for Elijah and Crumpet, then I could create a closed group. So that is all now complete and we have 10 likes and a few members. Yay!

So please come on over if you are on Facebook – you get a free entry into the book draw if you join the group! I have already connected with people from all around the world on there and it’s very satisfying to be able to add an encouraging comment for someone in need.

Short one today as it’s late and I have to get on with the edit for our Kickstarter video. 16 days to go until we launch (don’t you love the countdown clock I added on the left! It’s a good motivator for me!)

Have a great day/night! 🙂 Rob

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So Many Amazing People

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Since we started our YouTube channel, I have connected with so many amazing people – some creators on YouTube, some people working in the field of advocacy or disability services, but mainly people with Down syndrome and their families. I wish we had started earlier, since before we put ourselves out there, there were many people doing just that, using social media to advocate and make more people aware.

Why didn’t we start earlier? 3 reasons, really:

Firstly, I didn’t know what I was doing and I didn’t have the time, or I didn’t think I had the time, to learn. I didn’t have Instagram or Twitter and up until a couple of years ago I wasn’t even set up with an account on YouTube! I had no reason to be on social media, I thought life was busy enough.

Secondly, we were absorbed by working with Elijah to give him a normal life. A fully inclusive education and regular activities. Life was busy and being an advocate seemed to be something that other people wanted to do. While we do have friends who have kids with Down syndrome whom we met early on, we were not going to group functions. Again, life seemed busy enough!

Thirdly, the fear of social media and putting Elijah ‘out there’ in the world – a world where trolls abounded and it would only be asking for trouble. Now I know, the reality is that there are hardly any trouble-makers and far more lovely people. So, if I knew back then what I know now, maybe we might have started sooner!

So I commented recently that of all the supportive comments from our 1000 YouTube and 4000 Instagram followers, I have only ever received one nasty comment. Their comment doesn’t deserve to be told – it wasn’t that bad, but was intended to annoy. So I sent a nice comment back thanking them for increasing our views, reported them and blocked them. Job done. It didn’t bother me and it was actually then a talking point about how I had my first negative comment! It was like I had been waiting too long and now I had earned my first Troll badge! I am confident with the processes that Instagram and others have in place, making it quite difficult for those trouble-makers to be annoying for long.

Back to the amazing people, though … so while we are aiming to inspire, educate and entertain, there are so many doing exactly the same, or some of these. I am blown away by the abilities of so many people with Down syndrome whom I have seen on their Instagram accounts – business owners, workers, dancers, models, actors, sportspeople, or just happy kids with their families. It’s great and this in itself does such a lot to advance positive understanding of the condition.

Before social media, we hardly saw people with Down syndrome. Sometimes a group of people on a day out with their care workers. Otherwise with so many being put into institutions in the bad old days, with short life expectancy, it was hardly surprising that there was something of a veil over what Down syndrome was.

I see that veil as having been lifted now and we are all using social media to do this very effectively. When you consider the small percentage still who are on it, things are going to go from good to great. It’s only a matter of time.

The other observation is the international nature of Down syndrome. This is something that I have touched on before. The condition goes across borders, just as being human does, but the bond between families around the world is so much stronger. While in an ideal world, just being human would serve as a strong bond, we kind of stuffed that up some time ago and are trying to make things good again. With Down syndrome, though, plus the connectivity of social media, we are living in the perfect age to work together for a better world future. There is a lot of work to be done, especially with developing countries like China and those in Africa, and especially in the face of genetic testing.

So, what can we do? Well, now is the time to start working on something for 2021 The Year of Down Syndrome. It’s not just for those with or close to Down syndrome, but for everyone. I’m always encouraged when I see people without Down syndrome advocating – like Madi from the Dallas Cowboys, who is putting out stories each day through October to raise awareness. We will be doing our video for her tomorrow, having been asked by Trista the Barista, a lady we met via Instagram (she’s a worker, hence the name, and a hip-hop dancer)(and she has Down syndrome). The more people who develop understanding, the faster society will repair the historical damage that exists. Great opportunities lie ahead!

Have a great day and thanks for following! If you haven’t, please click the follow button on the left and you can also sign up for my email News-e-Letter on the menu bar. Best wishes, Rob

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How did Elijah and Crumpet come about?

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Thanks for coming back for the second half of the article I wrote initally for The Voice (the magazine of Down Syndrome Australia) back in March. It was modified for our feature page on the YOOCANdoanything website. Then some final changes on here. If you have come straight here, please stop reading and go to the previous blog for the first half!

(Also, while I have your attention, if you would like to be kept informed about how you can help launch our upcoming children’s book and its crowdfunding campaign on Kickstarter, please provide us with your email address. We will keep it to ourselves and send you updates – you can even help develop the books with us! Thank you for your support, Rob 🙂 )

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 (Social Role Valorisation) 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. Below are our very first 4 video thumbnails, before we learned about theming and logos! You can still find these videos (with better thumbnails now) on YouTube.

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 (links at the bottom of this blog so you can support them all)! 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!

Thanks very much again. I hope you enjoy reading this and, if you did, please follow and click the notification bell, or whatever you have to do on here! Since I am new to blogging, please send any feedback you have to: ElijahandCrumpet@bigpond.com – you can ask any questions and I will try to build the answers into my blog. I’ll be guided by you!

(Sept 2019 update to the figures above … we now have nearly 200 shows. We went past 1,000 on YouTube, which was a major achievement through hard work for a year. Instagram is now over 4,000 but they have changed their rules which means we are not able to advocate to as many people as before, unfortunately. We could still get the 10,000 but I think 6,000 is more realistic now. In addition, I have finally got the hang of Twitter, so that is growing.)

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

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You Can Do Anything

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I wrote this article first for The Voice, which is the magazine of Down Syndrome Australia, back in March. I then updated it into what you see here for our feature page on the YOOCANdoanything website. Today’s YouTube upload by Elijah on MOTIVATION reminded me that I should share this with you. I have split it into two parts as you may be time poor too! If you like it, please leave a comment and don’t forget to subscribe so you get a notification next time (for Part 2)!! Also, while I have your attention, please let us know if you would buy our upcoming book. Thank you for your support, Rob 🙂

Elijah is 10 years old. Crumpet is kind of also 10. I’m Dad and I’m 47, 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!

Our YOOCANdoanything photo (includes Jess Millward from The Today Show!)

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! Elijah has always attended regular schools where he has been in regular classes, with some additional hours of teacher aide assistance. He follows a modified curriculum and he is encouraged to take part in all school activities. He has won reading and class awards in assembly over the years 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?

… to be continued with Part 2 coming soon! Please subscribe to be notified!

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