I wish I was enough

When I was younger I was always the friend that everybody wanted around. I wasn’t rich or anything like that, but I was reliable and trustworthy so friends I had seemed to like me for that. I was the one they came to with their worries and struggles yet rarely were any of them there with time for me if I needed help. When I no longer had any use for them, I’d be dumped from the social group. It took me years of bad experiences to realise that I wasn’t so much the wanted friend, I was actually the usable friend.

It happened again at University, in certain jobs too so I started to avoid friendship circles as much as possible, deciding that my own company was better than being someones friend with an unknown expiry date attached. I wasn’t enough, I didn’t quite fit.

Even now in adult life, it still happens. I seem to attract a lot of people who need me for a certain time whilst I have a use and then they bugger off! For a very long time I stopped trusting people assuming they’d all treat me the same and that this was the pattern that would always happen, the disposable friend that was never enough to be wanted longer term.  Anxiety plays an extra role in this too, telling me constantly that I’m not worthy of people. Because, well, anxiety is a twat! Even the few friends I have that I have great close relationships with, in the back of my mind I’m always ready for them to stop caring for or needing me. Waiting for the day they decide I’m not enough. Because, after years of feeling like this, I still believe I’m not enough.

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This isn’t a pity party post by the way, it’s the thing I thought of at the last minute to write about for this weeks ‘Finish the sentence Friday’ group hosted by the fabulous Finding Ninee

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

 

 

 

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

The day she was born, I changed

There are so many moments in life that define you. Sometimes you don’t even see them until long after the moment has passed. Memories are triggered by certain words, feelings, photographs, smells, tastes, a conversation….. and so many more things and often reflecting on the past can lead to the realisation that ‘Wow, that was a moment that changed my life’. One of those biggest moments for me was the day Eliza was born.

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Here she is, a few hours old.

Eliza is ten this year. She was my first pregnancy and a joy to carry, I was never sick and bloomed throughout the pregnancy. She was a horrendous delivery, one of the scariest days of my life as well of one of the most beautiful. Eliza’s my first born. She entered this world in a dramatic, feisty diva style way and is a beautiful, confident, independent young lady that still retains that feisty diva side but with added pre-teen attitude and a sarcastic tainted sense of humour that she may have inherited from me. Having a baby changes you, of course it does, but sometimes in ways you don’t realise until you actually look back to that moment. There are the obvious physical changes and emotional changes but sometimes random little things too. For example, films or TV shows I used to love and watch before she was born I can’t watch now. It’s like my entire emotional workings has been rewritten and rewired with extra sympathy, empathy, fear and love than before. I feel so much more deeply. That probably sounds bizarre to some of you but I can’t imagine it’s just me that feels this way.

The day Eliza was born has helped create the person I am today. Despite my strange emotional reboot, I am so much stronger and confident. I feel a love that I had never felt before, for her and her younger brother (Yes despite the horrendous delivery, I did eventually go and have another baby and he made her delivery look like a dream! That’s a story for another day). I don’t view the world just through my own eyes anymore, I view it both through them and with them in mind constantly. I’ve tried things I probably would never have done without children. They are my world, my most precious loves.

 

This was written for the prompt ‘The day that changed me was…’ for the ‘Finish the sentence Friday’ group hosted by Finding Ninee and Mardra Sikora

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Ten photo’s I just can’t delete from my phone

This week in ‘Finish the sentence Friday’, the prompt is ‘Share 10 photos from your phone’ so here they are (It took me a while to choose ten as I have hundreds saved on my phone!!). You’ll see there is no theme or pattern, my photo’s are as random as daily life.

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This is Rockingham Castle, about fifteen minutes drive from my house. Small but incredible. I’m a real History geek and I love visiting castles and historic buildings. I visited this one over summer during my 6 days of being child free, when the kids went away with their dad. The weather was incredible and I had the company of a friend I’ve known for more than 25 years.

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These two argue and fight as siblings do but they have a beautiful bond that sometimes I’m lucky enough to capture in a photo. Noah loves sitting with Eliza but even at the age of four, he understand and accepts that she doesn’t always cope with contact and she needs her space. They really do love and understand each other.

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Noah visiting one of our local Country Parks. We’d painted rocks with colourful pictures and uplifting quote on, and hid them for others to find on their walks. I love that time of year, when greenery is starting to show again but there are still crisp leaves on the ground. Warm enough to not need a huge coat but cool enough to get a hot chocolate in the cafe after.

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In June of this year I visited Scotland for the first time in my life. Edinburgh was amazing, I loved the Castle and the historic streets. I visited the cafe where J.K Rowling wrote Harry Potter when she was poor and not famous at all. I walked the streets that were supposedly the inspiration for Diagon Alley. I saw men playing bagpipes in kilts and a guy dressed as William Wallace. One of my favourite photo’s is the one above. It might not look like much but that building you can see in the distance was where Mary, Queen of Scots was kept prisoner many years ago. You can read about it here On the 2 May 1568 Mary, Queen of Scots escaped Lochleven castle. Yep, I love history.

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Eliza is always so happy to see Chris who runs Autistic Not Weird, he’s become a close friend of ours and we are lucky that we get to see him fairly often thanks to him living only one hour away. He is one of our very favourite humans. The frame they are holding was made by me. I love arts & crafts. I made one last year and again this year so I think I started some kind of birthday frame tradition! Eliza is so comfortable with Chris, confident enough to tease him (in a fun way) and she even has her own nicknames for him. He is a friendly, caring and fun guy that advocates so hard for autism awareness and acceptance. He’s also an incredible writer and I have had the privilege of reading most of his work to date. His first novel is going to be published very soon, you can check that out here (Yes shameless plug and no, I don’t care because I LOVE this book) Guerrillas by Chris Bonnello It’s a book full of Characters that are the heroes and they have various special/additional needs including autism, PDA, ADHD, anxiety and down syndrome.

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Back in January, Noah and I went with his nursery on a trip to London. We had an amazing time and visited The Natural History Museum and the Science Museum. A day filled of space rockets, pictures of the moon, dinosaurs, skeletons…. he had a great day. First time on a coach for him as well as first time in big, busy and huge London and he coped really well and wants to go back again another day.

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Back in 2016 I was able to see and walk through the carriages of the Hogwarts Express. I’m a huge Harry Potter fan so this was super exciting for me. It was the first time you could walk in to No.4 Privet drive too (And I did, and I was all emotional!!). I’ve been to the Warner Bros Studio Tours three times now, It’s time I booked visit number four…

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One of my favourite places to visit in London is The British Museum. I’m a Classical Studies student so this is where I get my geek full on lol. I can spend hours in the Roman section but the place you’ll see me the most is where the Ancient Egyptian statues and mummies are. There are so many amazing photo’s I could keep on my phone from the museum, but this is the one that I love. Who is she? She is Hathor and she’s always fascinated me for many years. Twelve years ago I beat anxiety and a fear of large amounts of water to get in a tiny wobbly boat and sail across to the Temple of Philae. Why? Because it’s linked to Hathor. As we touched land I cried (partly the relief that I could get out of the boat, mainly because I was actually standing there at the temple). “Hathor was the golden goddess who helped women to give birth, the dead to be reborn, and the cosmos to be renewed. This complex deity could function as the mother, consort, and daughter of the creator god”.

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This time last year I did a graffiti tour of London with a friend. She needed photographs for her photography degree and she wanted some company. We had a great day and very sore achy feet from covering miles and miles of London. I saw this on a wall next to some other posters and graffiti and just loved it. It speaks for itself really.

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I LOVE THIS PHOTO. Taken on Eliza’s 9th birthday earlier this year and with all three of us being a bit cheeky. I love it because it reminds me no matter how down I feel when depression kicks in, I have these two little humans that are my world. When my anxiety is taking control, I look at photo’s like these. These are my babies. I grew them. I raise them. I keep them safe. They are everything. We’ve been through so much yet look at us all.

 

This week’s prompt is hosted by Finding Ninee and Sporadically Yours