An Open Letter to Those That Walked Out of Our Lives After My Daughter’s Diagnosis

 

Dear Friends,

Well, I say friends but that’s no longer the case is it? There are still times I think about what used to be, all the amazing times we had and the memories that we made. The excitement of my pregnancy, the tears of joy and happiness when my daughter was born. How we used to love meeting up with you all, we all had babies around the same age. The first couple of years were amazing. We shared some great times. As our babies turned two it was becoming more obvious that my daughter, Eliza, was different somehow. You were all supportive and encouraging. “She’ll talk when she’s ready”, “Maybe she’s just shy” and similar phrases were offered as comfort and reassurance. Our twice weekly meetups continued as well as attending the same baby and toddler groups.

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Here she is, a few hours old.

Eliza failed her two-year check that is completed by the Health Visitor to make sure children are reaching the milestones for their expected age range. It was no surprise to me or all of you. Life carried on just fine until the day we all met at the park and I told you that Eliza had been referred to a Paediatrician and that autism had been mentioned as a possible diagnosis. Looking back, the silence and the looks were the start of what happened next but as I felt vulnerable and overwhelmed, I’d assumed you were all surprised by what I’d said. A few days later I tried to arrange a meetup in the park, the sun was out and it was a beautiful day. But you were all busy. I get it, life’s busy. After a few days I noticed the lack of phone calls or texts that used to happen frequently. Again, I tried to set up some play day fun, nobody replied.

One day, on walking home from town, I bumped in to two of you separately. You two changed our lives that day. Friend ‘A’, you asked if we were well as you’d not seen us at a couple of coffee mornings at ‘B’s house and would we be going to so and so’s party at the weekend. It was clear to me that we’d not been invited to a few things. In some ways I didn’t mind, I never expect to be invited to everything. But something about the way you looked at me suggested you knew more than you’d let out so far. As I walked home with a sleepy Eliza in her buggy I bumped in to you. Let’s call you friend ‘C’. You were the one full of sympathy. You were the one telling me how sorry you were that my child wasn’t normal. You did the head tilt to one side accompanied with the “awwww but she looks so normal doesn’t she”. I tried to explain that Eliza was normal thank you very much and that she was just different. Then you said the words that I’ve never forgotten to this day. With your hand on my shoulder, sympathetic eyes staring at me you said “Why don’t you adopt her out and get on with your life….. you can always have another baby”. I never replied to you. I didn’t know how. I felt like my heart stopped beating for a few moments, my breathing slowed as I tried to process your words. My daughter hadn’t even been diagnosed and people were leaving us and telling me to give her away. I remember just walking away from you and looking down at my beautiful child, wondering how anyone could even suggest what you did. After that day pretty much all invitations to meetups stopped coming. Eliza was no longer invited to birthday parties.

I’m going to Fast Forward seven years now and tell you a little of what you’ve missed out on.

  • Eliza is very academically able and excels in computers, English and Maths.
  • At 9 years old she reads at age 11-12 years.
  • She’s learnt to play a brass horn and piano recently and took part in a small concert in assembly.
  • At 9 years old, she was asked to be an ambassador for a clothing range that promotes Autism Awareness & Acceptance.
  • She can swim, run, ride a bike, roll down a hill and all the things your kids can do most likely.
  • Eliza has friends. She loves parties, going to the cinema and theatre. Despite anxiety and living in a judgemental world, she’s finding her place and loving life.
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Eliza age 9

There is so much more you’ve all missed out on and all because you were frightened by a word. Autism. It really isn’t a word to be feared you know. Eliza might be different to your children in some ways but she’s not less of a person because of her diagnosis. If you’d stuck around you’d see the incredible, intelligent, beautiful girl she is. You’d hear her terrible jokes and fall prey to her slightly sarcastic tainted sense of humour. She’d infect you with her big cheesy grin and giggles and she gives the best hugs ever. You’ve missed so much, and you hurt us deeply. I really hope since then that you’ve thought about it and explained what autism is to your children because the likeliness is there will be autistic kids in their classes at school. We’re living a great life without you. It’s just a shame you didn’t stick around to enjoy it with us. I used to feel so much pain when thinking back on those days. But that’s just wasted time in my mind and you don’t deserve to occupy that space any more.

From the friend you deserted & and her awesome daughter

 

***This blog was originally written for the Firefly Website and can be seen here: The letter on Firefly

 

 

 

My fears for the future for my autistic daughter

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Every parent has fears about the future, it’s natural to worry about the unknown because we want to protect, guide and support our children as much as possible and for as long as possible and the future cannot be predicted. I have the same worries as most parents – finding the right schools, finding out she’s being bullied and a whole bunch of other things. When you have an autistic child, a whole new bunch of fears come in to the picture.

Eliza likes to chat about the future, she loves to be involved and it helps her anxiety if she can openly talk about things. We’ve already been talking that she’ll go to a new School one day as she outgrows her Primary setting. She’s ten this year so we’re talking High Schools as this coming September when it is EHCP review time, we’ll also start planning for the changes to come when she’s in her final year. Now we all know there are not enough schools, let alone schools that will be able to meet her needs. Hence, we’ve already been in contact with some and are hopeful they have space for her when transition time starts but it’s a worry that there won’t be one for her.

Every week I hear of services and therapies being cut back due to lack of money. Eliza’s current school provide pretty much all she needs including speech therapy, occupational therapy and they even helped us get on the SEN dentist treatment list. But it won’t always be this easy. What will be available for her when she’s ready to leave school? What services will still exist? We already know about the fight to move from DLA to PIP, they certainly don’t make it easy that’s for sure. I want Eliza to be as independent as possible, she has already told me she doesn’t want to live at home forever and she’d like to live in some kind of supported living arrangement. Again, there are nowhere near enough of these places. I’m hopeful that more will exist, or a suitable alternative.

My biggest fear is knowing that I’m not going to be here forever. I’m not immortal, I will die one day, and I want to make sure she’s had as much guidance, love and support as she can to help her take on this crazy world as an adult. She is strong, confident and intuitive but also vulnerable. Vulnerable to those that could take advantage of her kind nature. Vulnerable to those that could manipulate or bully her. Vulnerable to her own feelings, she’s an empath and feels extremely deeply so we often talk about this and come up with ways for her to help her control the strong emotions she feels, how to process and filter through them and most importantly, how to take a step back and allow her own well being and mental health time for calm and recovery.

She’s only ten this year, but Eliza’s already overcome so much and she’s aware of how much we have to fight for services, therapies, school placements, EHCP’s. She’s a confident and very academically able child, she understands more than most people assume. I will never stop encouraging her to have her own opinion and to stand up for what she believes in because one day she’ll be doing this without me.

 

*** This was written for the Firefly blog which can be found here: Fears for the future

Interview with the author of ‘UNDERDOGS’ – a novel with special needs heroes written by Chris Bonnello

For those that may not know you, tell us about yourself.

My name’s Chris, and I’m the writer behind Autistic Not Weird (http://autisticnotweird.com), diagnosed with Asperger Syndrome at the age of 25. After I left primary school teaching I launched my website to talk both personally and professionally about autism, and it’s taken off a bit better than expected! Three years on I’ve won three awards for my advocacy and given over fifty autism talks, some internationally (including at Sydney Opera House!). I’m also a special needs tutor, a Boys’ Brigade captain, an enormous chess geek and a soon-to-be-published novelist.

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Chris Bonnello

Can you explain why the title has been changed from Guerrillas to Underdogs?

It was a joint decision between myself and the publisher, because it’s far more suited to the themes of the book and its characters. Whereas Guerrillas simply means “we pick up guns and shoot them”, Underdogs alludes to the war their fighting (with odds ridiculously against them), the size and age of their army, and the characters themselves who have grown up being made to believe they’re inferior. And besides, who doesn’t love a good underdog story?

 

When did you start writing Underdogs and what inspired you to write it?

Underdogs has gone through a bunch of incarnations, but the very, very first draft was in 2010, back when it was named Guerrillas. I wanted to write the ultimate underdog story: a novel series where the good guys were almost mathematically certain to lose, but would fight anyway. Hilariously, writing the book was also a coping mechanism for my unemployment at the time, giving me something to do with my days. It was clearly never going to get published, but that wasn’t the point of it. And now it’s literally being published, with over 400 copies sold already.

 

Some of the characters are from Special Education. What made you decide to go with this amazing idea?

In 2014 I was working at a special school, and looked at Underdogs again. The thought of having the main characters being teenagers from a special school crossed my mind, and the more I thought about it the more I felt it absolutely had to happen. Not only would it be a unique idea in the dystopia field, but also there’d be major opportunities to discuss important topics. Underdogs would become a novel that would actually have something to say.

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There are some powerful messages/life lessons in the story. What do you hope readers will take away from the book?

I don’t want Underdogs to be too preachy: underneath everything else, it’s an intense action novel filled with loveable characters, and as a novel it should be seen that way. With that said, there are massive opportunities to be taken (and a lot of responsibility on my part) to make sure the reader is richer from the experience of reading. I want neurodiverse readers to experience a novel where they can identify with the main characters, and see people similar to them who go through massive challenges due to their conditions but do incredible things anyway. I want neurotypical readers to leave the book with a better understanding of teenagers with special needs: not just what makes them different, but also the largely unspoken common ground they have with other teenagers.

Finally, I want all the book’s readers to gain a little more insight into what happens when those defined by their weaknesses get a chance to play to their strengths.

 

What themes/genres does Underdogs fit?

Aside from the obvious young adult/dystopia genres, there’s an up and coming genre called “disability-lit”, which Underdogs is perhaps around the edges of.

As for themes… I’d say the big ones are the difficulties of being an underdog (both in the war sense and in the special needs sense, these characters have been raised to believe they’re “inferior” to those they’re fighting to save), and trying to be the best you can be when the world is not on your side.

 

Is there a certain age range the book is more suitable for?

I’d say “12+”, which obviously is an age range that includes adults. It has that Harry Potter/Hunger Games cross-age-range appeal, written for teenagers but adults are likely to love it just as much. Among its dozen or so beta readers, both teenagers and adults have been equally enthusiastic.

 

Underdogs is available in paperback and eBook once published. Is there any possibility of an audiobook version?

A lot of people have asked this. Unbound Publishing have told me that it’s rare that they do audiobooks, but they will if the book’s wildly successful and proves that there’s a level of demand for it!

 

Who is your favourite character in Underdogs and why?

I’d say it’s a tie between Jack, a 17-year-old lad with Asperger’s who understands computers better than people, and Dr McCormick who leads the Underdogs as a calm, guiding force who loves building people. Jack is a loyal, honest (sometimes too honest) young man who helps his friends put things into perspective, and a nice dry sense of humour. McCormick is like Dumbledore and Uncle Iroh from Avatar: The Last Airbender rolled into one, except a mathematics lecturer.

Kate comes close behind though. She suffers massively from anxiety but makes a point of confronting absolutely everything that makes her nervous. She is by far the bravest character in the whole Underdogs universe.

 

Will there be more Underdogs books to follow?

Oh yes. I’m on book three already! Obviously, the reception to book one will determine whether the publisher will except book two, but going by Underdogs’ performance so far I think we can afford to be optimistic.

 

As the author, tell everyone why you think the world needs a book like Underdogs.

Because representation matters. Meaningful, accurate representation of neurodiversity in fiction is so rare, and most neurodiverse characters in novels (or movies) are either tokenistic or based on stereotypes. Underdogs, if it performs well, may be a key part in the battle for representation as well as being a heart-pounding action novel in its own right.

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There are some incredible rewards with the purchase of the book including having your name printed in the book and meeting the author himself. Underdogs can be ordered here: Underdogs

Another New Year

How did 2019 arrive so fast? In the blink of an eye it is here and everything is back to ‘normal’ after a very festive period. The first week of January was stolen from us by the winter sickness bug, both children as its victims. Eliza coped really well considering she hates feeling and being sick. In fact, she’s got the patient thing perfected by really playing on it to her advantage. “Mummy, can you bring me a teddy…… can you get me a drink please……. I need ice cream…… because I’m poorly”. Each request met with a cheeky grin when she felt a little better. I’m glad the bug has gone away. I’m very glad it never grabbed me as well! A day of cleaning every single surface and floor made me feel a whole lot better after a week of germs.

School has been back for one week already. Just like that, a brand new term started. Eliza came home today with two awards. One for excellent reading and the other for completing 10 metres front crawl in swimming. She’s had a great first week back although the first few early mornings were a struggle and she actually napped on the journey to school. She has homework to do this weekend, write an essay about her Christmas holidays. Eliza is not a fan of written work, her fine motor skills are poor so she struggles but she loves Christmas, I mean REALLY LOVES it, so she’s happy to write all about it. We might be in January, we might have taken the tree down and all decorations, but she’s still singing Christmas songs and watching Christmas films and asking how many sleeps until Santa comes again. Once we get to the summer holidays (wow they seem so far away in July and August) she knows her favourite times are about to start – Halloween, Bonfire Night & the whole run up to Christmas. First though, she has a birthday to look forward to. In March she enters the double figures…… 10!!! She’s so ready, I’m so not! How is she growing up so fast?

2019 will be whatever it is. I’ve entered it with a fresh mind, no expectations or demands but a hopeful and positive attitude. This time last year I was in a dark place, needing therapy and medication to help me get through everything. A year later and for the first time in years I actually feel like me and I’m remembering who I am. It’s refreshing so I’m taking that with me this year. Working on me a bit more as I’m an expert at neglecting my own needs and putting other first. I have some amazing friends and family behind me so feeling very loved and lucky.

Enjoy your year, whatever it brings you. The past is called the past for a reason, don’t waste too much time pondering what should be left behind. No matter what the years brings, chase it and embrace it. Forward is the way, always forward.

This has been a blog prompt from the great ‘Finish the sentence Friday’ group based around ‘OMG, It’s January!’ and hosted by the fabulous Finding Ninee and Undiagnosed but okay

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How I help prepare my autistic child for the Christmas period

Christmas is a wonderful time of year for us, I absolutely love the Christmas holidays and so do both of my children. Not everyone feels the same though, and it can be a very stressful and distressing time of year for some. As much as Eliza adores Christmas and everything to do with it, she can become quite overwhelmed by all the lights, music and decorations because pretty much everywhere changes – home, school, shops, town, café’s…. Her love of the holidays clashes with the visual and emotional need for sameness and routine. She becomes quite hyper and struggles to concentrate because her surroundings, no matter where she goes, are different. Eliza copes well at this time of year thanks to a lot of planning, taking things at her pace and incorporating her needs in to everything that happens during the holidays.

When decorating the house, it’s done in stages. Little and often so she has time to adjust to the change in layout of furniture, the sudden Christmassy smells and lights. Advents are always out first ready for the start of December and she sees this as a reminder that decorations will soon follow. The tree is always last, as we get a real tree, and she knows that when the tree is up and decorated, that’s it. So again, she uses this as a reminder that all is done decoration wise. She’s never really been bothered about helping with decorating the tree, but I always offer so she has the choice. She likes to arrange the nativity scene and hang up the stockings, keeping her included with some things she enjoys. We always have a countdown board, so she knows how many sleeps are left until Christmas morning, and this takes away so much frustration and anxiety. Because she can see the numbers, she finds the whole period much more relaxing and enjoyable. When she was younger, we used picture visuals and social stories, so she could work out what was going to happen next but these days she’s very aware of Christmas and the countdown board works great.

Having a quiet safe space is really important to Eliza. At home, it is her bedroom. She will tell me she needs some time alone and she’ll go watch a film in her room or read a book. In such a busy period, she needs time to relax with little or zero social interaction. Her room remains as it usually does with all her cuddly toys, blankets and fidgets. She can go up and escape Christmas and all decorations and music in the safety of her own room. When out of the house it’s harder as almost everywhere is decorated and busy so if needed, we head back to the car and sit listening and singing along to the radio or sometimes just chatting. For Eliza, she can refocus, relax and feel safe. Planning is priority when going out at such a busy time. I like to have a few locations saved in my head for any emergency rest/chill moments that may be needed. I struggle with anxiety myself (so does Eliza) so I’m always aware of places we can ‘escape’ to if needed. Even though they are most likely decorated for the festive season, libraries offer a calm and quiet atmosphere and there is always room in the swimming pool café (The added bonus is that Eliza finds watching water very soothing and calming).

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Presents can be a time of sensory overload and extreme anxiety. We have friends who do not wrap the gifts because their child just cannot cope with the anxiety caused by the unexpected surprises that gifts offer. Eliza copes well with not knowing what she has, it’s more the volume of gifts that can make her overwhelmed. So, like the decorating, little and often is the approach for us. She likes to have all her gifts in a pile, so she can work through them as and when she chooses to. Sometimes she asks to open gifts on Christmas Eve and sometimes she still has gifts to open on New Year’s Eve, her choice. Having that sense of control helps her relax and enjoy Christmas on her terms. Family and friends are very understanding regarding gifts, they want Eliza to enjoy herself, so they are happy to go by her lead.

Food is the final thing to plan for. Eliza’s dietary intake is quite rigid, and I never expect her to eat a Christmas roast dinner just because it’s Christmas. It doesn’t upset or offend me that she’ll ask for pasta and sausages, and that is exactly what I will cook. I always offer her Christmas dinner despite knowing she’ll politely decline, but it includes her in the moment (plus you never know when she’ll change her mind and want to try something new). I’ve read on social media in past years that people have become upset that their family were disgusted because the child asked for chips and sausages for dinner rather than turkey……Why? It’s just food! It’s a beautiful memory of an amazing day regardless of whether it has turkey in it, chips or a take away! If food of your choice is forced on a child, it’s going to lead to upset and distress. So, I’ve always cooked whatever Eliza wanted and she’ll join us at the table on Christmas day with her cheesy pasta and countless pigs in blankets (a festive favorite of hers) and she loves being part of the Christmas day meal.

Christmas is a beautiful time of year and if planned for, can be a calm and relaxed event. Being together makes it a perfect time, not the decorations or the gifts or even the food. Time spent with those you love, that is the important thing and it’s finding a balance to keep everyone happy and include everyone and their needs, which is why I help Eliza enjoy it on her terms and with her needs always taken in to account.

 

***  This was a blog I did for Firefly. You can read it here  ***

 

Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel will interest you!

I recently did an interview with the fabulous Chris Bonnello who runs the popular website and Facebook page ‘Autistic Not Weird’. You can read that interview here: Chris’s Interview. The Pre-Order phase for the novel is still running until the second week of December so if you wanted to not only order the book, but grab some of the amazing rewards, (including having your name printed in the book or meeting the author) then now is the time to do it. If you know someone who may love a book like this that features heroes from special education with conditions including PDA, Autism and ADHD, please tell them about the book too. Thank you.

You can order the book here: Guerrillas order page.

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You can see Chris’s incredible autism advocacy at Autistic Not Weird

If anyone wishes to have the above poster image emailed to them so they can print it, email it to others etc then please send me a private message over at Living with Blooming Autism.

 

 

Interview with the author of Guerrillas – a novel with special needs heroes written by Chris Bonnello

I recently had the pleasure of interviewing Chris Bonnello who runs the very popular Facebook page Autistic Not Weird. Chris is a very close friend of mine, we met via our Facebook pages and he kindly added Eliza as one of the 150 children in his book What We Love Most About Life and now he’s about to become a published author of the novel ‘Guerrillas’. I’ve had the pleasure of reading the book already and it really is incredible. Action scenes that had me on the edge of my seat, some great humor and inspiring messages inside the story. Oh and at one point I swore at Chris for a certain scene that literally made my pulse race with anticipation! Don’t worry, no spoilers. Guerrillas is a book where the heroes are from Special Education with Autism, Anxiety, ADHD, Down Syndrome and PDA. I’ll add the link to where you can pre-order Guerrillas at the end of the interview.

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For those that may not know you, tell us about yourself.

My name’s Chris, and I’m the writer behind Autistic Not Weird (http://autisticnotweird.com), diagnosed with Asperger Syndrome at the age of 25. After I left primary school teaching I launched my website to talk both personally and professionally about autism, and it’s taken off a bit better than expected! Three years on I’ve won three awards for my advocacy and given over fifty autism talks, some internationally (including at Sydney Opera House!). I’m also a special needs tutor, a Boys’ Brigade captain, an enormous chess geek and a soon-to-be-published novelist.

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Chris Bonnello – Autism Advocate, Writer , Chess Geek… Also known as Captain Quirk!

 

When did you start writing Guerrillas and what inspired you to write it?

Guerrillas has gone through a bunch of incarnations, but the very, very first draft was in 2010. I wanted to write the ultimate underdog story: a novel series where the good guys were almost mathematically certain to lose, but would fight anyway. Hilariously, writing the book was also a coping mechanism for my unemployment at the time, giving me something to do with my days. It was clearly never going to get published, but that wasn’t the point of it. And now it’s literally being published, with over 350 copies sold already and we’re not even halfway through the pre-order phase!

Some of the characters are from Special Education. What made you decide to go with this amazing idea?

In 2014 I was working at a special school, and looked at Guerrillas again. The thought of having the main characters being teenagers from a special school crossed my mind, and the more I thought about it the more I felt it absolutely had to happen. Not only would it be a unique idea in the dystopia field, but also there’d be major opportunities to discuss important topics. Guerrillas would become a novel that would actually have something to say.

There are some powerful messages/life lessons in the story. What do you hope readers will take away from the book?

I don’t want Guerrillas to be too preachy: underneath everything else, it’s an intense action novel filled with loveable characters, and as a novel it should be seen that way. With that said, there are massive opportunities to be taken (and a lot of responsibility on my part) to make sure the reader is richer from the experience of reading. I want neurodiverse readers to experience a novel where they can identify with the main characters, and see people similar to them who go through massive challenges due to their conditions but do incredible things anyway. I want neurotypical readers to leave the book with a better understanding of teenagers with special needs: not just what makes them different, but also the largely unspoken common ground they have with other teenagers.

Finally, I want all the book’s readers to gain a little more insight into what happens when those defined by their weaknesses get a chance to play to their strengths.

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What themes/genres does Guerrillas fit?

Aside from the obvious young adult/dystopia genres, there’s an up and coming genre called “disability-lit”, which Guerrillas is perhaps around the edges of.

As for themes… I’d say the big ones are the difficulties of being an underdog (both in the war sense and in the special needs sense – these characters have been raised to believe they’re “inferior” to those they’re fighting to save), and trying to be the best you can be when the world is not on your side.

Is there a certain age range the book is more suitable for?

I’d say “12+”, which obviously is an age range that includes adults. It has that Harry Potter/Hunger Games cross-age-range appeal, written for teenagers but adults are likely to love it just as much. Among its dozen or so beta readers, both teenagers and adults have been equally enthusiastic.

Guerrillas is available in paperback and eBook once published. Is there any possibility of an audiobook version?

A lot of people have asked this. Unbound Publishing have told me that it’s rare that they do audiobooks, but they will if the book’s wildly successful and proves that there’s a level of demand for it!

Who is your favorite character in Guerrillas and why?

I’d say it’s a tie between Jack, a 17-year-old lad with Asperger’s who understands computers better than people, and Dr McCormick who leads the Guerrillas as a calm, guiding force who loves building people. Jack is a loyal, honest (sometimes too honest) young man who helps his friends put things into perspective, and a nice dry sense of humour. McCormick is like Dumbledore and Uncle Iroh from Avatar: The Last Airbender rolled into one, except a mathematics lecturer.

Kate comes close behind though. She suffers massively from anxiety but makes a point of confronting absolutely everything that makes her nervous. She is by far the bravest character in the whole Guerrillas universe.

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Will there be more Guerrillas books to follow?

Oh yes. I’m on book three already! Obviously, the reception to book one will determine whether the publisher will accept book two, but going by Guerrillas’ performance so far I think we can afford to be optimistic.

As the author, tell everyone why you think the world needs a book like Guerrillas.

Because representation matters. Meaningful, accurate representation of neurodiversity in fiction is so rare, and most neurodiverse characters in novels (or movies) are either tokenistic or based on stereotypes. Guerrillas, if it performs well, may be a key part in the battle for representation as well as being a heart-pounding action novel in its own right.

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If you want to, you can Pre-order Guerrillas here (It’s already over 100% funded but please don’t let that put you off, it can still be ordered).

***The first chapter of Guerrillas is available to read on the pre-order page too ***

There are a variety of order options available with exclusive rewards linked to the pre-orders including the chance to have your name (or someone else of your choice) in the book as a patron. We have a few copies coming, I’m putting one away for Eliza for when she’s ready in a couple of years time. She’s super excited that Chris is publishing a book. To those of you that order, I really hope you enjoy it as much as I did.

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