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 ***
Eliza was diagnosed with autism and moderate-severe learning difficulties when she was three years old. She attends a special education school in which she is thriving in and she is a very academically able child if the correct environment and support is in place for her and her needs. The fact she doesn’t attend mainstream raises a few eyebrows sometimes and usually accompanied by “Oh, well she looks so normal” or “She doesn’t ‘look’ autistic” or similar statements. Invisible disabilities/difficulties can cause so much frustration and stress to us as a family because of how others see them (or clearly don’t).
Autism is a fairly invisible condition especially to those that have no previous knowledge or experience with it. For some children it can be quite disabling, depending where on the spectrum you ‘sit’ as such. Eliza’s biggest giveaway is her stimming that she does when she’s happy and excited. Her arms and legs shake, she hums a certain noise and she jumps up and down. Although to many they’d still not realize she was autistic because of this, they may just see a very happy child. Invisible conditions can leave you in quite a grey area when it comes to support and services. For Eliza, in half of this grey area is the diagnosis. To some, they assume that being autistic automatically makes Eliza unable to do things. Diagnosis can bring support, information and access to certain therapies etc. But it can also bring a lot of misunderstandings, myths, assumptions, judgements, ignorance… the list goes on but you get the idea. People talk over her and ask me “Does she like…. Would she prefer to….” without considering that my now 9-year-old daughter can actually answer for herself. Then there is the talking in front of her “Oh, so sorry to hear she has autism” …. Firstly, she’s awesome and just different, not broken. Secondly, she’s not deaf! We’ve been in scenarios in the past where adults have decided to not let her try certain games or tasks because they don’t think she’s capable. They didn’t even let her try. They used her diagnosis as a reason to refuse things and as an excuse to not let her try. It’s frustrating and certainly not inclusive.
The other half of the grey area is that Eliza looks ‘normal’ so she’s not disabled/autistic enough! Yes, we’ve heard these actual words many times and they don’t get any less annoying each new time either. Claiming DLA or PIP is a nightmare to so many families. Not only is the process long, overwhelming and stressful there are always a handful of people you’ll meet that tell you that, because she’s not physically impaired or disabled, she shouldn’t qualify for help or that based on how young she is and that she doesn’t deserve money to help her with her needs. Family have even had issues with the fact Eliza gets DLA. They don’t agree with children getting financial help because they are ‘just children’. Yet they don’t ask why she needs the money. They don’t understand the cost of sensory lights, black out dens, sensory toys and clothing (Especially when a super sensitive sensory child will only wear certain materials). They don’t realize that childcare in the form of a 1-1 with the correct experience can start at ten pound an hour upwards. Because she can walk and talk, she’d judged by many as to what they feel she should be entitled to (or not).
So you find yourselves being passed from ‘not autistic enough’ to ‘are you sure she’s capable, being autistic and all’ scenarios. That’s why we do our best to raise awareness and understanding of autism. Thankfully we have some incredible friends and family that support us and accept Eliza for the wonderful child she is. No judgements, no assumptions. Just love and understanding.
** This blog was originally done for Firefly click 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.
It’s hard sometimes to put in to words just how grateful I am to you all for the care and support you show Eliza. When she started with you, she was a bit ‘broken’. She’d been the victim of a bully who emotionally and physically hurt her. She was angry because the bully always got away with it. I was angry that nobody seemed to care about our concerns. She was wary of other children because she was unsure if they’d lash out at her based on her awful experiences. Anxiety was starting to creep back in her life. Eliza was also very misunderstood be some people in her past who saw her as a diagnosis and nothing more. They didn’t know how to support her because they didn’t understand her or her needs. Instead of progressing, she was losing valuable skills and not being challenged academically. Worst of all, they sometimes didn’t even let her try new things. They had decided that because she was autistic, she was unable to learn, and her diagnosis was used as an excuse sometimes. They were wrong. So very wrong.
I cried the day the letter arrived offering her a place at your school. I’d had quite a fight on my hands with the local authority to get it. From the day we looked around, I knew you would be the school that would see her for the bright, loving and amazing person she is. I knew your school was where she needed to be. I think we can all agree it was the right choice! Eliza loves going to school now, she always comes home with a smile on her face and she’s made some lovely friends. So quickly, you noticed how academically able she is and how she needs to be challenged with her work, it’s how she progresses so well. She is thriving with you, she really is. You’ve given her a huge boost in her confidence and helped her recognize her own potential and you’ve made her feel welcome and cared for. You’ve made her feel safe. She’s trying so many new things because of your amazing support – playing musical instruments, performing in concerts and assemblies, taking part in sports day and so much more. Most of all, you’ve allowed her to be Eliza. Not just a diagnosis. You fully accept and understand Eliza for who she is. You acknowledge her difficulties and help her with them in any ways you can. In return, she’s becoming more comfortable and confident in helping her classmates when they are struggling. The support you give her (and us) is priceless.
Thank You just doesn’t seem enough for such a wonderful school.
**This was a blog I wrote for and was published on the Firefly Blog
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.