Noah had his first School photo taken this week. I can’t wait to see what it looks like. It could go either way really. Total cuteness overload or crazy happy boy with goofy face pulling. I’ve had all sorts from Eliza in the past so I’m ready lol. Either way, I’m so excited.
Winter. I love winter. The kids look forward to Sunday afternoons where we often do a quick trip to the local park, head home for hot chocolate, popcorn and watch a film together. If it snows, we’re the first ones out with the sledges! We have snowball fights and create random snow sculptures.
Taking the kids to see ‘The Grinch’ at the cinema. Eliza has been waiting months for this film. She loves The Grinch and pretty much anything Dr. Seuss wise. I’ll be doing my best to listen to the voice of The Grinch and not look up expecting to see Sherlock Holmes (Benedict Cumberbatch is the voice).
My birthday. It falls between Christmas and New Year and often forgotten by many because it’s such a busy time, but I look forward to it because the children do. They know Mummy has a cake and they get to assist with the blowing out of candles and then the eating of said cake. I get a few balloons and we order in take away food. I’ve always hated my birthday. It sucks to have it at that time of year but now I have children, it’s made it a bit more special because they insist we celebrate it.
Seeing my dad this month. He turns 80! Wow, I feel old! It’s a huge milestone to reach, especially when cancer keeps trying to shorten his years. I’ve no idea what to get him of course. He’s going to be 80, he has everything! Eliza’s priority for her Grandad – cake, candles and balloons!
The day that cuts to services and therapies ends for SEN children and adults. It seriously can’t continue the way it’s heading. Cutbacks for schools is appalling too and needs to stop. It frightens me what the future may hold for both children, but especially Eliza who will need supporting as an adult.
The New Year. I’m not one for resolutions as such but I do enjoy closing the door on the year gone by and the feeling of a brand new year or fresh start being offered.
A close friend of mine is about to have his first novel published! I’ve ordered our copies and I can’t wait to have them here in the house. It’s a story where the heroes are from Special Education with Autism, ADHD, PDA, Dyslexia, Down Syndrome and anxiety. It is an incredible story and I’ve had the privilege of reading it already as it was being created. I’ve laughed, I’ve cried, I’ve sat on the edge of my seat for parts of it. At one point I swore at my friend because the scene he had written was so tense and emotional that my Fitbit was losing the plot with my pulse rate lol. Basically, a great book! I’m shamelessly going to leave the link here – Guerrillas by Chris Bonnello
My children’s birthdays next year. Noah will be 5 and after all he’s been through with his illness and surgeries, the further away he gets from that time of his life, the better. As for Eliza. She will be 10. Ten. TEN!!!!! Double figures. I’m not ready for double figures. She is, she tells me how grown up she is and how she is excited to turn 10. They are both growing up so fast and in to amazing people.
The future. No matter what happens I look forward to the future because it’s unknown and despite being a little daunting at times, it’s also exciting. There will be times of joy and laughter but also times of despair and uncertainty. But we have some incredible people around us to spend time with so we get through the good and the bad together. To my dad and my friend who are fighting cancer – You got this. Keep going and kick it’s arse. It’s not welcome and it has no right to be in your lives. Love you both.
This was a promt for ’10 things I’m looking forward to’ from the ‘Finish the Sentence Friday’ group I am part of. Hosted by Finding Ninee and Sporadically Yours
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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…
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”.
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.
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 started as a Facebook post here but a few people messaged and asked for it as a blog so here it is***
Recently I ended up in a rather heated discussion in an online parenting support group about autism. In particular the difference between high and low functioning. Now first of all, I’m not a fan of the word ‘functioning’, I detest it but as this quote fit what I was trying to explain at the time (plus some of Eliza’s own paperwork describes her as ‘low functioning’) I’ll use it just to explain my point. The photo below is of Eliza and Chris from Autistic Not Weird. Beautiful photo isn’t it? Eliza’s diagnosis on paper is written as “Autism Spectrum Disorder and moderate-severe learning difficulties”. On more than one report she’s also described as ‘low functioning’. Chris has a diagnosis of Asperger’s (And yes, I have his permission to post this photo etc).
The heated discussion I ended up in was a post about varying levels of autism, where people ‘sit’ on the spectrum as such but a small bunch of individuals were harping on about if you are high functioning you should lose the diagnosis label as you don’t deserve it. One lady in particular, I argued with at great length after she announced on the post that any child or adult that was considered severe autism or low functioning should be institutionalised so the Country could save the “wasted money given to the retards who don’t know what to do with it anyway” (Her words!). I was so angry with the whole conversation. The use of the R word alone was down right degrading and disgusting but to suggest those that are lower functioning should be locked away? And those that are high functioning should no longer be considered autistic?
Every single individual is different. Every single one! But high functioning does not mean that person doesn’t struggle. It does not mean they need no help or support and often they carry on unsupported because they are expected to which is damaging. Have you any idea how hard it is to be pressured in to being ‘normal’ because you are high functioning and that means society assumes you have no troubles or issues? And should you dare to have any issues, it’s assumed that you either need no help or that you are faking it or ‘not that bad’….. Let’s flip to the other side. Low functioning. This does not mean lack of intelligence, lack of understanding or that these children and adults are less than others. Eliza reads older than her years, is learning piano and brass horn, makes hilarious jokes and is very academically able with the correct support in place. But according to that person in the group, we should lock her away because she was discussed in a report as ‘low functioning’?
I’ll stop here because reliving that argument is making me angry and ranty! As much as I detest the word ‘functioning’, this quote sums up what I was trying to get across in that group. But I’ll just add that by no means is Eliza ‘low functioning’. It was a term used by certain individuals who chose to write her off at a young age rather than wait and see exactly what she was capable of.
When Eliza was diagnosed with autism, it was a relief. A relief because I knew she was autistic anyway but that single piece of paper with her diagnosis on was a key, a key to open the way to the specialist education, therapies and interventions that she needed. She was only 3 years old but early intervention is so important although not always available and the sadness and reality these days is that support services are being cut daily and budgets slashed so many children are now being forced to wait years for an appointment let alone a diagnosis. I know she was diagnosed at the ‘right’ time both personally and when all the services she needed were at our disposal. We were some of the lucky ones before the SEND crisis started spiralling out of control. The reality these days is that children and adults are being failed. They are left to wait, made to fit in, expected to adapt without support and this is damaging.
When Eliza was diagnosed, she had already been using Makaton sign language and began using PECS (Picture Exchange Communication System) to aid her communication. Her favourite word was ‘no’ which she could speak and sign perfectly! But when out in public, strangers would often stop and chat in the supermarket queue and many quickly judged Eliza for not replying to them, assuming she was rude. Often when I explained that she had very limited speech and was autistic and needed time to process things, we’d get replies including “She’s just trying it on, she’s fooling you”, “Oh but she’s a girl, she can’t be autistic” and “I’d not put up with that, I’d have her talking by the end of the day….”. Often Eliza would reach for the PECS cards I carried in my pocket or on her bag and point to pictures of what she wanted or what she’d seen. She was communicating yet the sight of these picture cards used to make people turn away and whisper, some would just stare at her and loudly ask “Can’t she speak then?” which would then send a lot of eyes towards our direction and often lots of sympathetic head shakes. The reality is that a lot of people do not understand autism, communication aids and or anything that they don’t see as the ‘norm’ and when they see a child or adult that is different, attitudes are usually ignorance or pity.
When Eliza was diagnosed, we lost contact with a lot of friends and even some family over the following couple of years. The child that had been attending parties and play dates was suddenly left out, despite the fact she’d never been anyone or anything different to the beautiful and funny girl she always had been. But diagnosis somehow made a difference. Suddenly Eliza wasn’t Eliza anymore to them. She was ‘the different one’ or ‘the autistic one’. Whether through ignorance or lack of understanding we were excluded. Eliza was excluded. Some family didn’t understand (some didn’t want to try to either) and we were given the “She’ll grow out of it, you’ll see” and “You read about this in the papers, parents getting their children labelled so they can claim extra money”. YES THAT ACTUALLY WAS SAID TO US! Family seems to assume that as they are family, they can say whatever they like without repercussions. Just because we are related doesn’t give you any right to be rude, ignorant and judgemental. The reality is that everyone has their own expectations of what is ‘normal’ yet many don’t wish to understand or at least try to realise that, actually, Eliza is perfectly normal thank you very much. She’s just different in the way her mind works. A diagnosis opened some doors for her regarding therapy and school but it also closed some with friendships and relationships.
When Eliza was diagnosed, it didn’t stop her doing any of the following –
Making friends and maintaining those friendships.
Learning to swim.
Reading at a level 2 years above her own age.
Taking control of her own anxiety and facing her fears of being in theatres, cinemas and restaurants.
Learning to play a brass horn and also learning piano.
Telling awful made up jokes about farts and burps.
Becoming an Ambassador for an Autism Awareness & Acceptance clothing line Just Ausome
Being asked by Chewigem to review and share feedback about their products.
Why do people leave us? Eliza asked me that question recently after watching a film that involved a friendship breaking up and people going their own ways as such. We chatted about how life can be different for everyone, how we can change, people move away, people die…. Eliza was comforted by the in-depth discussion we had that covered a lot of reasons. She likes logic and she also likes truth. She listens and processes the information in her own way and she moves on, happy with her knowledge that she gained. This doesn’t mean she isn’t sad or that she isn’t affected by what we talked about. Eliza shows a lot of empathy and understanding but she is able to move on with life knowing she’s saved the information for a day she might need to use it. As I sat thinking about the conversation she’d prompted, it reminded me certain memories, of how we lost certain people from our own lives.
Death. One of the main reasons people leave us. I’ll never forget the last time we took Eliza to see her Great Grandmother in hospital. I knew it would be the last time but little toddler Eliza was unaware and went about her business of waving at nurses and smiling at people. As we were leaving, Great Grandma hugged Eliza and whispered in her ear “promise me you’ll never grow old” and gave her a kiss. An emotional moment that has stayed in my memories and makes me tearful just writing about it. Because she was an incredible woman. Because I knew that was the last time we’d likely see her. Because it’s a promise none of us can make. Death will come for us all.
Distance. Some of my closest family members are not close distance wise. Oh how we miss them dearly. Family and friends move away for various reasons and you keep in touch as much as possible but it still feels like they left you or you left them. These days the internet helps so much with social networking sites, Skype and various online messenger chat boxes to use. It makes it easier to stay in touch but there is still that sense of loss that lingers.
Destruction of friendships. As a young girl it was a common thing shouted in the playground “I’m not your friend anymore” as children fell out with each other. It wasn’t long until they were best friends again of course. As an adult, friendships break for other reasons. One of the biggest things I wasn’t prepared for was how an autism diagnosis would cost us over seventy five percent of our friends. When Eliza was diagnosed at age 3 it was a time we all needed understanding, love and support. Instead we watched people leave our lives because they didn’t understand or didn’t want to. Our lives didn’t sync with theirs, we had very different priorities. Friends I’d known for over ten years simply walked away. Some family too. Still, it filtered out the ones that would stay no matter what. The ones that said “I’m here” and meant it. We’ve also gained some amazing friends through online support groups and Facebook pages. Our internet family (and a few we have met face to face and are now much loved and very important people in our lives) We are so thankful to have them. I know who will always be there for us. I know who won’t leave.
There’s more I could write but my time is up. This was a prompt for ‘Finish the sentence Friday’ and this weeks subject was to do a 5-minute stream-of-consciousness using the prompt “Leave”. Hosted by Finding Ninee and Sporadically Yours
The summer holidays have ended and a new term has started at school. Where did 7 weeks of summer go? I seem to have blinked and missed it! We have had some fun though. We met up with some friends, had a few play days, trips to the cinema and various parks. Eliza had her dental surgery too, her first anaesthetic and she did really well and coped amazingly. They removed six baby teeth in total, all refusing to come out on their own and two of them so worn that the nerve endings were becoming an issue and stopping her eating. As soon as these teeth were removed, the new teeth were already showing. Oh it is such a joy to see Eliza eating and drinking again. The teeth have been an issue for a few months as we waited for her operation date. She’d lost 8lbs in weight in that time and now the teeth are sorted she’s already gained 4lbs back and is loving her food again. Eliza did extremely well in hospital although a few times she was angry that she couldn’t have something to eat or drink, she’d been nil by mouth from the night before. Even as she went under the anaesthetic, her eyes closing, she whispered “I want sausages and chips…..”. The first thing she said as she woke up afterwards was “Why are we not in the cafe yet?”. She did so well and she was so grown up about the whole thing. She’s really coping with her anxiety a lot more these days. And yes, on the way home from hospital we collected sausages and chips!
Last week she was back at School on Thursday and Friday. She was calm and relaxed and rather excited. Her School is pretty amazing, they really ‘get her’ and have helped her to grow in confidence as well as acknowledging what an academically able child she really is with the correct support in place. It was great to see her return to school so happy and fairly anxiety free. Later that morning on the Thursday, a memory came up on my timeline app on my phone. A photo of Eliza returning to school last September. I was so shocked at how much she’s changed. She’s lost the last of those baby face features, gotten so much taller and just suddenly looks so grown up!! Here, see for yourselves….
A few years ago I used to carry her in to school crying and anxious. Often I’d collect her at the end of the school day anxious and quiet. The last year at that school was just awful. Wrong class, wrong teacher and a bully that made her life miserable for months (verbal and physical attacks). Her academic ability was not understood and she was so bored and frustrated. Within weeks of being at the school she’s at now, she was already calmer and happier. It was clear her academic levels were so much higher than the previous school thought and Eliza made incredible progress fast. She loves her lessons and has recently shown an interest in music. She learnt to play a brass horn instrument and after only 8 weeks took part in a concert at school for the parents to watch. More recently she has been learning piano and really enjoying it. Her teacher tells me Eliza can read music.
Eliza going back to school so calmly and happily shows how much she really loves being there. The school is amazing and every time she returns to it I know she’s going to be happy and well supported. In 2 years time she’ll start high school but let’s not go there yet! Seriously though, I can’t get over how much she’s grown!!