Tag Archives: downsyndromeawareness

Recycling Book Underway

Our 4th book is now well underway. It’s a rubbish book … which isn’t what you think 🙂

We have been collecting cans and bottles from local businesses and houses, so we are turning these into a book on recycling. A recycling book fully funded by recycling! Very cool. Plus Elijah is meeting more and more people around our local area, building connections which will help him later in life. (And it gets him away from screen time, teaching him a good work ethic!)

We will then give these recycling books out as rewards, as supporters give us their recycling items … and with the profits we will be able to distribute free books to schools in the local community (and then further afield) with the intention of:

  1. Encouraging reading;
  2. Creating awareness of recycling;
  3. Creating awareness of Down syndrome;
  4. Introducing more people to Elijah and Crumpet.

Recycling as a community project attracts a lot of support, from locals, businesses, council and local media. So I would definitely recommend it as a way to raise funds for a worthy cause.

To follow our book illustrations progressing from draft ideas through to final pages, complete with commentary, click here!

October is Down Syndrome Awareness Month

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?

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.

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.

Happy Down Syndrome Awareness Month!

It’s Cool to be Different

Have you ever wondered what being cool means? If you have a teenager in the house and you are a parent, at least you probably know what ‘not cool’ is! In the absence of a dictionary – my definition is that being cool is when you do, have or are something that other people think is cool at that point in time.

So sometimes being different is cool, if it’s something that others aspire to do, have or be. Otherwise, if everyone is doing, having or being it … well, I guess there are lots of people being ‘different’, so there are lots of cool people. Until one minion declares that something else is important and then the cool-o-meter resets to zero.

In fashion, like art, you often see people who are different standing out. When there is something different or unusual about a person, it seems they have the edge. The society of the day deems what that thing is, but it’s the nature of fashion (and art) that there will always be those looking for the next trend, challenging the status quo and discarding the norms of the day. We love traditions but we have come to expect change. We embrace the new breakthrough trend and wonder why it took so long to be realised.

What’s the point? Well, a thought I have been having is about Down syndrome and the whole same/different discussion. You may know the hashtag #MoreAlikeThanDifferent – Do you push an agenda that your child is the same as everyone else, or do you shout out about the differences. Obviously, there’s a time an place for both, but I sometimes wonder.

At the start of the journey, when the world seems to be turned on its head with a Down syndrome diagnosis … Different … the advice is to just treat your beautiful baby as you would any other … Same. We expect other people to view our child as a child first … Same … with Down syndrome second … Different. For Inclusive Education, we expect our child to have access to regular schooling. Same. We expect the curriculum to be modified and appropriate adjustments to be made. Different. Workplaces create dubious reasoning to justify why they could not give someone employment, thinking they have to treat everyone the same to be fair. Same. We call that out knowing that there are many other benefits to employing someone with Down syndrome, including some different to the usual criteria. Different.

Standing out from the crowd can be a good thing. In business, having a point of difference can make your business a success. So if supporters value the difference and provide their custom, a person with Down syndrome can be successful. The more people who value that difference, who see it as a positive thing, even see the ‘overcoming the challenge’ as something cool, the more successful a person living with Down syndrome can become. People with Down syndrome and their families do have to work harder for the same things. Considering the state of the story book on Down syndrome we have inherited, certain countries are very lucky that the tide is turning. That’s in contrast to countries like Iceland and developing countries like China and many other countries around the world where the governments (and therefore many people) just don’t value people with Down syndrome the same way.

So the starting point is to change the story we are telling about what it means to have Down syndrome. We need to promote the similarities and yet sell the differences in a positive way. We can take advantage of uniqueness and transform it into something cool. We need to use social media, a very powerful game-changer putting power in the hands of the people, to change the inherited stories into our new uplifting ones. The fashion around Down syndrome is changing and rather than hiding behind closed doors, people around the world are proudly showing off their successes. The energy is shared and with all the newcomers you can feel the momentum is building.

It’s a different way of looking at it.

Now I think that’s cool.

Finally on Facebook!

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

KICKSTARTER Started!

Well, at the last minute, I decided to get an old art campaign up and running again – this time as a Kickstarter campaign so that I could have a trial run and learn more about the process. Here is what I uploaded this morning. Since you can’t run two campaigns at once, I only had a limited amount of time, so the video was just taken from our old YouTube one, with slight modifications. I know it doesn’t explain the project that well, but hopefully the text does. Anyway, it reminds me that we have to make a great video for the book! Here is what I posted:

Link to Kickstarter page at the bottom of this page

What makes this project fun and unique?

21 Paintings Around The World is unique because we need 21 people around the world to receive one of our paintings each, then send us a photo or short video of it, so that we can RE-CREATE the artwork in digital form for the public to see once again. So you can all become artists in our project! Very cool! And fun? Well, just look who’s running the show!!!

Elijah and Crumpet – World Famous YouTubers and Instagrammers

Elijah and Crumpet started their YouTube career just over a year ago. They have since grown their YouTube channel to over 1,000 subscribers and have over 4,000 followers on Instagram. There is Dad’s Blog on WordPress too. You may recognise them from TV (if you are in Australia) as they were on Channel Nine’s The Today Show recently! 

Elijah loves making the shows and he often asks if we can do some filming. It’s been great for his development as we have been motivated to try new things out for the show. He has been using advanced memory techniques to learn foreign languages and his it has accelerated his reading ability. Through film-making, Elijah learns to stay on task, learn a script, play a role and act, all of which develop his mind and help provide the skills to allow him to live an independent and rewarding life. You can read more about the Elijah and Crumpet channel and see some of our 180 shows here (including this one when we met Hugh Jackman, thanks to The Today Show):

Elijah and Crumpet meeting Hugh Jackman

The Early Years

When Elijah was born, I (it’s me, Dad/Rob) knew very little about Down syndrome. There was a natural fear that our child would not be able to do things. Elijah has shown us that by working hard at things he can exceed expectations. It may take him longer to do what most people easily achieve, but he does this with a great sense of humour and positive spirit … well, sometimes he needs chocolate (don’t we all!) 

Early on we attended a course on Social Role Valorisation (SRV). Briefly, from what I remember still, the main concept behind SRV is that we have to show our children in a positive light in society. We do this through roles. Society values certain roles, so if you have a job, you are valued as an employee or worker; if you can speak a foreign language, you are considered a clever linguist; or if you can play an instrument, you are a musician. Through his art, Elijah is seen as an emerging artist, so he has yet another valued role. He is able to learn the techniques required to paint with acrylic and through social media we can celebrate this with the world. The world therefore learns to see people living with disability in a more positive way.

21 Paintings Around The World – How the #NoSmallArtist idea came about

We love doing CRAZY things on our show. We think outside the box and aim to do things which have not been done before. It’s all about being memorable and giving viewers a ‘WOW!’ moment which stays with them. 

We started with the #NoSmallArtist hashtag because we wanted to inspire and motivate both kids and adults to get painting! We were already part of the #NoSmallCreator YouTube group for creators just starting out. The ability to create art is in all of us and, fortunately, there are many styles and techniques which cater for all levels. Abstract art is the most obvious one which allows absolute beginners to produce something meaningful. Art is as much the thought process as the physical painting, which lends itself to beginners. We just have to get started, which is a barrier to many. Hopefully seeing Elijah and Crumpet getting stuck into the creative process encourages others to do the same. 

The idea for this 21 Paintings project came up because we wanted to link up with families connected to Down syndrome around the world. (21 is significant because the medical name for Down syndrome is Trisomy 21, since there is a third copy of the 21st chromosome.) The only problem was that back then our channel was quite small, so while there was interest, there was not enough for all 21 paintings, so we postponed the project. (The video above was actually adapted from one of our original videos!) 

Below is ‘4 Corners of the World’, which is a smaller version of the 21 Paintings project. This was also put on hold until we had more viewers. It shows the concept well, though. We position the canvases together and then Elijah paints on them, as one complete painting. We then split up the artwork into the 4 pieces and send these to participants around the world.

When they receive the painting, they take photos or make a short video (on their phone or camera) about the painting’s new home. They can add something about themselves as well, if they like, or about the town they live in. This gets sent back to us and we splice all 4 videos back together to make a digital piece of art. Art which will never physically be together ever again (most probably!), but which exists as a public piece of art forever. The owners feel a bond with the other 3 owners, so it’s a pretty cool concept.

Why Kickstarter?

When we started work on our Elijah and Crumpet Children’s Book (which is itself a Kickstarter campaign starting on 28th October – please make sure you visit then!), we considered self-publishing and crowdfunding. After learning about Kickstarter, we started setting up the campaign for the book.

Then just last night (3rd October), I remembered the unfinished 21 Paintings project. From being a novice creator on YouTube I knew that just getting stuck in and starting something, you learn the fastest. So I thought it would be a good idea to run this campaign first, for just 21 days during World Down Syndrome Awareness Month, so that I could promote it and also gather attention for the book project. “Create a mailing list”, as all the podcasts seem to advise! So although I am not giving myself 3 months to prepare, it will be fun and it will be something of a talking point if I can get the campaign prepared in just over a day! Here goes!

Rewards

The cost of sending the paintings around the world, plus the materials, is about $100 Australian, so we are asking backers for that amount if they want to receive the painting. Otherwise, smaller contributions will go towards painting equipment and materials for this and future projects.

When we first asked our viewers who was interested in the project, we learned that a few people could not afford to pay for the postage (such as one lady in India who said that they needed their spare cash to afford medical expenses for their child). So to include them, we had the idea of having sponsorships … hence the ART SPONSOR rewards which will allow us to donate paintings to 4 backers. These backers will be chosen from people who respond and ask to be put on the mailing list for the project. Dad’s choice is final and it will depend on factors such as the country, how many other people we have in that same country, plus the story of the participant.  If we do not get enough, we will offer it to those people who have contributed as MATERIAL(s) SUPPORTERS, choosing someone at random.

Thank you for supporting us. Let’s do this!

With best wishes from Elijah, Crumpet … and DAD 🙂

Risks and challenges

All the materials have been purchased. The only risk is that we get sick and can’t do the work. Otherwise we have a track record of getting things done, as you can see from our YouTube channel growth. If for some reason we don’t get the funding, we will relaunch at a later date.

You can visit the Kickstarter Page here:

https://www.kickstarter.com/projects/elijahandcrumpet/21-paintings-around-the-world-nosmallartist

#2021Theyearofdownsyndrome

My, that’s a long hashtag. Fairly hard to read, which is why I normally write it as #2021TheYearofDownSyndrome.

“The Year of Down Syndrome?” I can almost hear you thinking, “What on earth is that about?”

Well, in this evening’s blog, late on Friday night when I should be sleeping, allow me to explain.

Click to watch YouTube Video (opens in new tab)
YouTube video announcing our project

Yes, we do some crazy things here on Elijah and Crumpet. That’s because it’s an outlet for creativity. We have a lot of fun, but at the heart of the channel is the desire to achieve change. Change for Elijah. Change for Down syndrome (“DS” from now on). Change in the world. That’s when it gets serious and we start advocating, not through entertainment with its ability to change opinions and expectations in a subtle way, but with more direct calls to action.

I’m sure you noticed that we have reached something of a crisis point in the history of humankind when it comes to the future of the condition of DS. I have said before that I’m no professor, so please don’t quote me on anything as it may be slightly wrong or my source may be poor, but I remember Iceland was happy to let the world know that it had no births with DS. China (still a developing country in many ways, despite it’s massive economic progress), I read doesn’t advise families about how a child with DS can lead a fulfilling, happy, productive life with the right support. They test without permission for DS and then talk about termination if DS is found. This is me just scratching the surface and it is very worrying.

Everything hinges on how society views Down syndrome. If we look at our track record – up until recently, the medical profession was giving incorrect advice about the expectations that families should have for their newborns with DS. How is that possible? It’s really because we (society) are so ignorant. There are so many examples – take the U.K., for example, where women were not allowed to vote not long ago (last century). In fact, most men weren’t allowed to vote either if you go back slightly further. Then America and others with slavery, or South Africa with apartheid. All of these issues are now looked back on with shaking heads as it’s hard to believe how ignorant we were – how wrong society had got it.

I look back at myself as the younger Rob, the Rob before Elijah, when I knew very little about DS. My mother’s uncle had a son with DS, David, so we had met him a few times when we were younger at the odd family gathering. Being a child I was a little unsure about how to interact, but I saw that he was fully accepted and loved as a part of our family. Later on, I knew that having any child was hard work and that a child with a disability would present additional challenges, but my wife and I were okay with that and we ended up joining the lucky few! But now, when I look at how I view DS completely differently, without any fear, but instead with great expectations, I feel compelled to take action in society to help the world see the light.

The world is now a smaller place.

Being human unites all peoples around the world. We are all one human race. Over time we created nations, with borders, cultures and languages, but underneath all that we are still very close to one another. Every society has people with Down syndrome. Just like there are different genders. In fact, if you look at what differentiates us, DS is a level above gender, since it affects all genders. So if you have DS, you are first human, then you have DS, then comes your gender, then the other groupings kick in, such as nationality, religion, culture, language.

Down syndrome is therefore an extremely unifying condition. The connection I feel when speaking to someone from Japan, or Russia, or Nigeria, or America, who has a child with DS, is that we have a common bond. We have been through similar challenges and come out knowing similar things. We understand that society has got it wrong. We become friends through this shared, very personal, emotional experience. I’m not sure there is a word to define the world-wide group of people living with Down syndrome, since it’s not a nation, nor a culture. Perhaps we should consider it an e-Nation in today’s internet age. The e-Nation of Down syndrome. Now, there’s something worth considering.

#2021TheYearofDownSyndrome is a call to action. To do something more.

We have 21st March as World Down Syndrome Day. We also have October as World Down Syndrome Awareness Month. The trouble is, these events seem to be a time when those in families with DS communicate how things are not as bad as what the rest of society thinks they are. Then those key events are over and we wait for the next year and we do the same. The rest of society sometimes watches on. Now, I know a lot of people do a lot of great work advocating for change. I want to build on that, not take away from it. I myself felt like I wasn’t doing enough, so starting Elijah and Crumpet was good for me and good for Elijah. But what more could we be doing? And why should we have to do more work, when we should be persuading others to achieve change in society – bigger changes which take longer to achieve. Change which takes longer than a month. Longer than a year. So I thought, let’s set the end of 2021 as the target completion date, giving everyone over 2 full years to get something done.

I thought that surely someone would have already grabbed 2021, with the obvious Trisomy 21 connection, as a significant year. To my surprise, a google search for ‘2021 Year of Down syndrome’ and ‘2021 The Year of Down syndrome’ came up with ‘no results’. What fun – the hashtag was also unused, so we coined it. #2021TheYearofDownSyndrome was now a thing. Time to share it with the world and get to work! But wait, can we do that? Well, yes, I don’t see why not. It may not be an official event as agreed at the United Nations, but in the e-nation of humans enjoying life with Down syndrome (and their families), I gave myself permission to crack on with it. I can be the authority. If others agree with the idea and get on board, we can own it, run with it and turn it into reality.

So, what happens next? Well, I wanted to write a bit of a manifesto. But then I thought that I would just get this blog done, then summarise what needs to happen: everyone should commit to achieving something big by the end of 2021. A BHAG – a Big Hairy Audacious Goal. If we break it down, we have 5 main groups, who can commit to achieve something by themselves, or they can achieve something by working on or with one of the other groups:

  1. Individuals with DS and their families;
  2. Families with no DS connection (supporters of DS);
  3. Businesses;
  4. Organisations;
  5. Governments.

If these 5 groups have big aims and make big commitments, we have a big movement and we can achieve big changes in society. Who knows what that will look like? Not me. But if just a few people achieve just a few more things than they otherwise would have achieved, the idea will have served its purpose.

#2021TheYearofDownSyndrome – what’s your BHAG?

The clock is ticking.

Please don’t forget to click FOLLOW and join our news-e-letter to keep up to date on the Elijah and Crumpet Children’s book launch. Thanks for visiting, Rob.

Writer’s blog, not Block!

Having a routine is important, as it helps keep you on track. Take this morning – I realised that it was Thursday, then realised that I had missed uploading my blog yesterday. It woke me up early and so here it is! Certainly no writer’s block here, as we have years of videos and books planned. And here is our most recent bit of excitement … shout out to Andy Marshall our illustrator, who has cracked the code for our logo:

Elijah and Crumpet
Our new logo, sticker and book series cover

I forgive myself for sometimes failing in the discipline or organisation department – it’s not the end of the world. Especially since last night, after putting Elijah to bed, eating and admin, I was busy from 9-1 re-doing the draft Elijah and Crumpet book video. I incorporated all of the feedback received so far into version 2 and decided to start releasing this to influencers and followers around the world.

Now, you might think releasing our material early is not wise – what if someone takes our ideas? Yes, I had exactly the same thought, but once something is released, even as a blog or YouTube video, copyright rules apply. Then what if someone did take our work? Well, the attention from the uproar that would cause once they were found out would actually be quite good! That old saying applies – ‘Bad publicity is still good publicity’ (disclaimer, that might not be the saying, but it’s something like that)! Finally, if they are not Elijah and Crumpet, what would they want with our work??? On the other hand, what about the benefits of sharing early?

Well, doing my research on Kickstarter, for our upcoming campaign, I see the successful campaigns have engaged their audiences. Involving you, our supporters, brings many benefits:

  • You know what you want, so you can provide great feedback.
  • It’s fun for you since you feel special.
  • You are keen to see the project succeed.
  • You are part of a team, building a community.
  • We feel the love and that is appreciated.
  • There is a wide range of experience out there, which we tap into.
  • You have your own network of contacts, so hopefully you will tell all of your friends about us, then they tell their friends, and so on.
  • You may get to win the odd perk – ideas welcome!

By you signing up for emails, I will able to send out things which don’t appear elsewhere, such as the paragraph below in the book which didn’t make it in (it’s not the place to be ruining the Crumpet ‘secret’ for the little ones. It would be like a Christmas book with Santa at the end having Dad pull off the wig saying, “That’s the last year I’m doing that!” … not the best idea!):

And sometimes he tells everyone,
What they're not meant to hear,
That Crumpet's really played by Dad,
That might be true, I fear.

So please, if you haven’t already, sign up for emails. As a reward I will send you the link to the draft book, so just click the ‘OUR NEW BOOK EMAIL’ button at the top. Please click ‘FOLLOW’ and I will see you twice a week, or thereabouts. Please tell me what you would like to be reading about and I will see what I can do. Thanks for your support. Have a great week, Rob

Let’s make a book!

Have you ever thought about writing a book? Is it on your bucket list? Are you not sure how to start, but intend to find out one day? If you answered “Yes” to all of these, then I know how you feel! Since starting Elijah and Crumpet I have been thinking about doing a book, but there was just never enough time and it kept getting put back on the shelf for another day.

When I first started the YouTube channel, I didn’t have a clue about YouTubing, but the advice I learned from watching my first ‘So you want to be a YouTuber’ video was to JUST GET STARTED! I chanced upon a group of video creators with the hashtag #nosmallcreator which had been started by Cody Wanner in the U.S.A. and so I started to network. One of the group was Andy Marshall from South Australia, who was vlogging about a career change. He wanted to become an illustrator and was showing how he created the artwork for his own children’s book project.

I liked the cartoon style and, since collaborations are an important part of growing a channel, I reached out in April and asked if Andy wanted to draw Crumpet. Andy was up for the challenge and I was blown away by what he produced! Here it is:

Now, I have read thousands of kids books over the years and my favourite are the rhyming ones. Dr Seuss are the classics but I like the more modern ones (The Gruffalo, Stickman) even more. Elijah loves to finish off the sentences and so rhyming sentences have been great for developing his memory recall skills. I also like to write songs and I find rhyming quite easy, so I began to get some poems onto paper.

Later on I did an Instagram live chat (as Crumpet) with Andy, for his Creator Chat project. When you engage with someone in this way, you get to know them, or at least you feel like you do. If they are genuine and tell their story, over time the trust builds. One day I was listening to Andy talking about having to mow lawns to get some money coming in. It was the end of August and we were about to appear on national T.V. for the second time. It came to me that we could work as a team on a series of books. I could provide Andy with paid work as an illustrator and he could help us get the book done. I sent an Instagram DM (Direct Message) to Andy and he thought the idea was great. He was in.

Neither of us had any experience in doing this, but we both had the motivation to make it work. We both knew from learning to do YouTube videos and other things that problems are not barriers, just hurdles you have to navigate (jump or, as I used to, push over), so we looked up contracts, figured out some pricing, came up with a plan which also allowed Andy to continue documenting his journey … and we had a deal. Contracts signed.

Finally, I found podcasts. I know, I’m a bit behind in many regards! Take Instagram, for example – I didn’t know how to use it a year ago, but I am very willing to learn and now we have over 4,000 followers and try to post daily! So listening to podcasts on my hour drive to work and back, I learned about self-publishing and then about crowdfunding. More research online followed and I decided that the best way to reach more people would be to run a Kickstarter campaign.

If we had backers, we would not have to settle for the cheaper paperback and we could also engage with these backers, adding in fun bonus perks like stickers, drawings, videos and special offers, like the chance to appear in our books! If we were funded, we could really advocate for disability and inclusion by getting our message out there, with free books to influencers, plus reaching out to schools, libraries and the media. More about self-publishing and crowdfunding in later blogs and emails (please sign up).

And here we are, with our first book underway. Andy has completed Stage 1, which is the style guide. We needed to be happy with the representation of Elijah (Crumpet was easy as it was already done). The brief was to ensure that Elijah was recognisable, but still in cartoon style rather than a true-to-life image. As you can see below from Andy’s Instagram account @andycmarshall, over time it came together.

The text has been completed, so the next stage is to finish off the storyboard, which we have already outlined. Then the final page illustrations will begin. In the meantime, the text for book 2 is also done, but we’ll keep that one under wraps for now!

Thanks for visiting. Please click FOLLOW to receive notifications about the next Blog. I will try to write two a week, but timings may vary. It would be good if you could sign up for email updates (see link at top) – then we can email updates to the Kickstarter campaign directly to your inbox (if you really want to get behind the project, you could then resend to all of your own contacts!)

How did Elijah and Crumpet come about?

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

Practice Makes Perfec.

People often ask me where I find the time to make all the YouTube videos. Well, it’s a combination of giving up other activities, like reading or watching television, not sleeping and practice. I love the title of this blog, ‘Practice Makes Perfec’ for 3 reasons:

  1. Elijah can say ‘Practice Makes Perfect’ in German!
  2. It’s so true.
  3. Well done, you spotted it – it’s no mistake, the ‘t’ is missing for a good reason.

Before I go into a bit more depth on each of these, let’s cover off the sleeping and free time parts.

We all like to put our feet up after a long, hard day of kids, work, cooking, cleaning and the general busy-ness of life. I’ve been doing it for years now (about 29, no I’m not 29 … since I was 18)(I’m 47), so I know how to zonk and do nothing. Turn on the T.V. or, more recently, the iPad. With Netflix, YouTube and our beloved apps, it’s hard to resist choosing to be entertained and letting time pass. But it’s only by giving up these things and redirecting that time into Elijah and Crumpet that I am able to keep up the content creation.

Next sleep, or lack of it. Luckily I have always been high energy and able to operate with less sleep. Now, I know that it’s healthier to have 8 hours of sleep (I hear it a lot from my wife), but if I can get by with less, I get more done. So I sacrifice 2 of those 8 hours, use the time to create something which will last forever, and hope that I don’t get woken up by kids or cats in the night!

Now the 3 reasons in more detail:

Yes, Elijah can say Practice Makes Perfect in German – you’ll hear it on some of our videos when Elijah is demonstrating his language skills! It started when I thought I would see if he could remember another language. I had studied languages at university, so I believed that if Elijah could learn to speak English, he should be able to speak a second language. I wanted to test my belief because I did not know if having a learning disability would cause some ‘switching languages link’ in the brain to be missing (no, you don’t get any correct medical terminology from a languages graduate!)

Hear Elijah speaking German and Welsh!

Well, he was happy saying the phrase and then, days later when I asked him, he remembered it. In case you are now intrigued, it’s ‘Ubung macht den Meister’ (no umlauts (two dots) as I don’t have a German keyboard) which literally translates as ‘Practice makes the Master’. This became Elijah’s amazing memory party piece and opened the door to bigger goals.

And so it is with our YouTube video journey. In the picture you can see our early videos. I took the advice from a ‘How to get started on YouTube’ video … and we just started. We put the hours in (Elijah for the filming hour and me for the other 6 hours of editing) and pushed out videos from 4 September 2018, reaching 70 before the year was out. Then another push to make sure we had over 100 before we got on Channel Nine’s The Today Show. I went from zero experience on video editing using Adobe Premier Pro to ‘not bad’ (according to Thomas, our other son) so I’ll take that as a compliment! Trial and error, frustration with forgetting how to fix the problem I fixed last time it happened, losing all my work because I forgot to save and the blasted thing crashes … all of these. But over time, my speed improved and I got back some sleep. Perfec!

Nice segway – if you have watched our earlier videos, you will have seen the sign on the wall behind us saying ‘Practice Makes Perfec’ . The idea of the sign came from watching other YouTubers, with their inspirational quotes on the walls behind. Originally it said the correct ‘Practice Makes Perfect’, but one day I printed it off with an error to have fun with Elijah, to see if he spotted it. In the video you see he does, so it made for good filming.

Practice Makes Perfec sign (go to 2 min 10)

But then the phrase took on another meaning, as in most things, we aim for perfection, but never really get there. That could be work, relationships, our garden, hobby or meal. There is always room for improvement, so the missing ‘t’ symbolises just that. We need to be happy just getting to where we get to, with what we have achieved through our hard work, not worried about what we have not done.

The idea then spread to the world we entered when Elijah joined us – the world of disability. We experienced first hand the challenges that are present in society, which is unfortunately still struggling to get past the ‘f’ on its journey to being ‘Perfec’. The thought that ‘nobody is perfect’ is secondary in most marketing and advertising strategies. It’s all about the perfect life, perfect house, perfect physical and mental health (although thankfully we are finally more open about mental health issues). To be accepted and valued with a disability, what does that look like? How does society value people it considers ‘not perfect’? It’s a debate unto itself which I will undoubtedly discuss further in later blogs. For now, keep practising at whatever you are doing and Elijah, what’s Practice makes Perfect in German? (Elijah:) “Ubung macht den Meister!” Thanks for joining us 🙂 Rob