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
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).
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 ***
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.
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.