I can no longer remember how many times I’ve heard the words “She doesn’t look disabled”.
Don’t even get me started on “She doesn’t look autistic”, what exactly do they think an autistic person looks like.
I’ve sometimes thrown that question back at people and they stand there, stunned and can’t answer.
As far as the disabled comment goes, it really bothers me.
My daughter walks. She doesn’t need a wheelchair, so people automatically assume she’s not really entitled to her blue badge and they stare and whisper or make ignorant and judgemental comments.
No, she’s not in a wheelchair, sorry about that. But she has some mobility issues, a lot of safety issues and she’s a child that has a condition that affects her emotions, thought and the space around her.
She’s autistic with moderate learning difficulties and these difficulties can impact her life greatly.
She’s easily lost without guidance and when sensory overload kicks in or anxiety, the ‘fight or flight’ often ends in flight regardless of surroundings, traffic, roads.
When her anxiety is in full swing, she often becomes limited with speech too and resists support and help.
So yeah, for those reasons and a few more, she has a blue badge. But for many members of the public, they visually expect to see a physical disability.
A total lack of awareness and understanding for autism and for all invisible conditions.
I’m quite a tolerant person but there are days I want to laminate copies of her DLA entitlement, risk assessments and her Occupational Therapy report and stick them in our car windows so before we get the “Well, she doesn’t look disabled” and “Well, there is clearly nothing wrong with her” comments, the public can read and educate themselves!
A lot of people don’t realise that you can apply for a blue badge for hidden disabilities and conditions, it’s a fairly new thing.
In some ways I understand why people react as they do when they see my daughter walking and looking very able.
It doesn’t mean their behavior and comments are acceptable mind, just that I can see why they think the way they do.
It’s frustrating that society can be so judgemental before knowing the facts.
The final thing I’ll add here is that to get a blue badge you have to provide a lot of reports, evidence, reasons.
You have to jump through hoops and go through a system that doesn’t always play fair and you have to prove how that invisible condition impacts daily life.
To the members of the public with their whispers, looks and judgey pants on – I promise you they don’t hand out blue badges or DLA easily.
We have to fight for everything! So please, try and learn more about invisible conditions and disabilities rather than looking at us as if we’re playing the system or faking it!
My daughter, Eliza, is autistic, diagnosed at age 3.
She’s struggled with various things during her life so far, one of the main ones being continence.
She was in pull ups until she was 7 because she just didn’t recognise the need or urge to go and use a toilet.
There were also added issues with her not liking small spaces (and let’s face it, toilet areas can be small, especially public ones) as well as fearing sitting on what she visually saw as ‘a hole’.
It just didn’t make sense to her and it caused anxiety.
We read books together, created social stories and she had apps on her iPad about toileting, but it still took a lot of patience, support and understanding and not pushing her too hard, allowing her to process things and go at her own pace.
So how did we do it? Other than the books and apps we had, I also used her favourite dolls and teddies and sat them on the toilet and potty to show her how it all worked.
I had a syringe full of water hidden up my sleeve which I squirted in to the loo so it looked like the doll had done a wee! She thought it was hilarious and it took away some of the anxiety as she could see that nothing scary happened, it was just a wee.
Eliza was getting closer to being confident to use the toilet and her understanding about it all was great, but I chose the time wisely to give her that last gentle nudge.
Christmas! She loves Christmas.
After speaking to our local children’s continence team and telling them my idea, I just went with it and hoped I knew my child as well as I thought I did.
I wrote Eliza a letter from Santa who told her that his wife, Mrs Claus, would be sending Eliza a special package this year.
She was so excited. I purchased a variety of underwear choices in her size, a pink padded toilet seat and put them in a box, added a letter from Mrs Claus that praised Eliza for learning about using the toilet and how Eliza was growing up so fast and that she’d sent Eliza this special delivery to help her with the final step.
Eliza thought this was wonderful and she tried her underwear straight away and has been dry ever since!
A lot of parents seem to panic when their child doesn’t use the toilet by age 3!
Why? Let them develop at their own pace and find their confidence to do these things.
The more pressure you add, the harder it will be.
Remember that some children might have hidden fears of small spaces and other things – lighting, ventilation noises, hand dryers.
And for autistic children, go at their pace and offer as much support and patience as possible.
Allow processing time. Allow mishaps and accidents and don’t get upset by them but give them encouragement and support.
Let them ask questions, watch apps, social stories – whatever works. Not all children will become continent, I’m aware of a lot of friend’s children that are still wearing adult nappies as teenagers and adults.
One of the saddest parts of this is the ignorance, mocking and stares from other people who don’t understand why someone isn’t ‘toilet trained’.
Because they don’t see hidden conditions or invisible disabilities, they simply judge.
Another issue I’ll highlight here comes from a friends Facebook status that I saw today.
Her adult son is autistic and needs care/supervision 24/7. They were out for lunch and she needed the toilet herself.
The disabled toilet was out of action (which she normally uses so she has him with her at all times) so she had no choice but to take him in to the ladies’ toilets with her as he can’t be left alone.
And yes it may not be ideal and you may think it’s inappropriate, but sometimes there really is no choice and we have to keep our children safe, even when we need a wee!!
It took me a while to start writing this blog, I had to really stop and think what I do regarding self-care!
When you have a busy life with work, children, studying, there is little time to do something that is fun and just for you.
It doesn’t have to be something big like going to a spa for the day (Oh a whole day in a spa, that sounds amazing), it could be something like reading a book.
Alone. In peace and quiet. For ten minutes.
One of my biggest flaws as an adult is not looking after myself when it comes to self-care. I’m the first one up in the morning, I get the crazy school run sorted for two children and often haven’t even had breakfast or a drink by 10am.
When I do remember to make a coffee, I drink it cold an hour later after getting lost in laundry piles or hoovering. I used to think that when both children were in school, I’d have so much time on my hands.
How naive I was, I seem to have less time and I have no idea how that works!
As parents, we are so busy doing things for other people that we forget to do anything for ourselves.
And sometimes, by the time we have some free time, we’re exhausted, and we get stuck in the same of cycle of events. It’s important to take time for yourself and you can start off small. I have a 5 year old and a 10 year old.
One of them is autistic and has a very random sleep pattern. Often she is awake till quite late at night meaning I am never really alone at any time.
But as she is 10 and happy to watch a film or play a game, I will go and have a quick bath.
It’s rushed and not overly relaxing but it’s ten minutes where nobody needs me, nobody is talking to and at me and I can just enjoy the silence for the brief time I have.
I try and read in the evenings when I go to bed, if I am not too tired.
It may only be a page a night but it’s my time and my hobby.
When my children are at school I am usually cleaning, shopping or studying but I have recently made myself try new things so that I actually leave the house, see other human beings, have adult conversation and do something fun!
It’s not easy finding things that fit in school hours, as a parent and carer I am often house bound in the evenings, so I feel very lucky with the things I now do.
I start my week with attending a carers music club. We sing, play instruments and have a laugh.
I get to meet other carers and not feel so isolated. And it’s in school hours, bonus.
I end my week doing a local yoga class. It’s helped my anxiety and stress levels so much and I feel so refreshed after each session (and then a little stiff the day after because, well, I’m lacking in fitness and getting older!).
And again it’s in school hours, another bonus.
In between these two events I am so busy with life but having these things to do that are mine, that get me out of the house away from my assignments (mainly away from the ever growing laundry pile) is great.
They help me get through the hectic times and give me things to look forward to as well as pushing my boundaries, giving me confidence and reminding me that I can do self-care and for me, yoga and carers club are the forms my self-care take right now.
As a child, I loved going on holidays in the car and every summer we spent the last two weeks of the school holidays in either Norfolk or Lincolnshire at the seaside. My dad drove as mum never learnt to drive, my mum attempted to navigate the map book (back in the no Sat Nav days) and myself and my younger brother would be in the back of the car asleep, listening to music or asking “are we there yet?” after being woken up at 5am for a 6am start to the destination.
Even though we went to almost the same holiday homes every year, the journey was still so exciting. I loved, and still love, looking out at the different views, seeing different towns and cities and observing the different traffic and wondering where their destinations were for that day. I’d always have a notebook in the car and I loved writing down number plates or cars, lorries, buses. I had pages and pages of them. It kept me busy and away from boredom. I’d also carry with me my Walkman cassette player and listen to the few cassettes I owned – T’Pau, Tiffany, New Kids on The Block, The Carpenters…. and often I’d borrow my dad’s country music tapes too (Any youngsters reading this may need to go Google what they are. There was no such thing as an iPod back then). In some ways, the travelling was such a wonderful part of the holiday for me. There was of course the odd occasion where we’d get lost (Once, my dad had followed a car for so many miles that he decided it must be going to the same place we were. So we kept following it…… down a small road…. in to a cemetery….. for someones funeral! We still talk about that story now. In fact we told it in my Dad’s eulogy earlier this month because we all knew it so well and it always makes us smile). Later this month I’m taking Eliza and Noah to Norfolk at half term for a few days away. We have my dad’s ashes to scatter and a few family favourite places to visit.
As an adult, I’m not a great fan of travelling. Anxiety is usually lurking and ready to pounce and any sign of nerves. I can drive, but I prefer not to. Driving is not something I enjoy at all, it’s a huge anxiety trigger for me. But driving means I can take the kids on holiday, to parties, to family visits and various other places. There are times, I feel OK about driving and my confidence is growing. I’d happily say I like and tolerate it at times but it’s very much a love-hate relationship. Although I recently purchased a newer car and for the first time it has lots of techy stuff in that I never ever had before – automatic windscreen wipers, automatic lights, removable and washable seat covers, built in Sat Nav and a rear parking camera! I have to admit, these techy extras have made driving a lot more tolerable and dare I say it, easier.
Both of my children seem to love being in the car as much as I did when I was a child. At ages 5 and 10, it must seem exciting still. Noah likes to look out at the views and he loves seeing various trucks go by. He’ll tell me all about the bridges we cross and what’s under them whether water or more roads. He finds buildings fascinating too. Eliza likes the views but she’d rather occupy herself with a book or an iPad. Or a snooze! If they start to get fidgety or bored or start the “are we there yet?” repetitive question, then we play a game. I ask them “who can find ………. first?” and it might be a red car, an ambulance or even a pigeon that they are looking for. Usually this ends in lots of laughing as if they can’t find whatever we are looking for, they make something up.
Our car is not just a car. It’s a safe space that we’ve often used. When Eliza was anxious or in a meltdown stage, I’d always say to her “Let’s go sit in the car” as it’s lockable, safe, our space. It could be as quiet or as noisy as she wanted it to be. It had her seat, her books, her blanket. It was a place she could calm and recover. She’s always remembered this as recently I received the phone call to say that my dad was dying and that I needed to go see him asap. We were outside a huge supermarket, having just been evacuated for a fire alarm test. I was shaking and numb, couldn’t find the words to speak to the children and attempting to formulate a plan from the hundreds of thoughts whizzing around my brain at that moment. At just 10 years old Eliza stood and watched me for a few seconds and said “Mummy, I think we should go sit in the car”. She knew it was my turn for a safe space and I’m so incredibly proud of and thankful for those words at that moment. Despite my love-hate relationship with driving, my car offers us safety.
Thank you for reading. This was a prompt for our ‘Finish the sentence Friday’ group with ‘Road Tripping’ hosted by the fabulous Kristi from https://findingninee.com/
I recently wrote in a blog that I call my anxiety, depression and PTSD, the ‘trio of doom’. Because that is what they generally bring when they stop by, a sense of impending doom! Between them I live in a constant whirlwind of emotions as depression wants me to sleep all day and ignore the world but anxiety makes me feel bad about the stuff I should be doing and need to be doing. As for PTSD, it drops by when it feels like it and leaves a wave of panic attack feelings behind and a fair few sleepless nights.
My daughter, Eliza, is ten years old and struggles greatly with anxiety although she’s finding her own ways to take control of it and she pushes her own comfort zones and constantly tests her own bravery levels! She is amazing! For her, she feels ‘naughty butterflies’ in her tummy. That is how she describes her anxiety. And often after a bad anxiety time, her tummy is the thing that hurts her physically – uncomfortable anxiety related pain. She’s able to tell me when she gets that feeling now and on the days she can’t (because anxiety is winning) I’m able to tell by the look on her face and the tone in her voice. And we work through it together.
Anxiety, the biggest liar of all, makes me feel inadequate, worthless and tense. It keeps me awake, makes me pace, makes me overthink and double guess everything. It is bloody exhausting! Depression makes me tired. Simple as that. I struggle to get my backside out of bed some days because it tricks me in to thinking I need to stay there. PTSD – working on it as it’s not as predictable as the other two. I’m finding my own ways to get rid of these uncomfortable feelings, these uninvited ‘guests’ that feed on my happiness and calm.
Art has been an incredible outlet for me. Sketching, painting, digital art. I made a friend a book of sketches about characters and other things from his book. They’re rubbish really but they kept me busy and allowed me to use imagination in my art from one of my favourite novels. I joined an art class that I attend weekly in term time. This was really pushing my own comfort zones knowing I knew nobody there, questioning my skill levels and not to mention the 40 minute drive each way. But I did it and I love it. I start my third set of art classes in September. Painting and sketching allows me to escape the trio of doom as well as releasing my creative side. They offer a chance to focus, to calm and to breath through it all. When my heart starts to beat faster, my palms start to sweat and I’m losing control – I paint!
Despite the struggles with the annoying trio, I’m glad they exist in a way. I keep going. I don’t let them win (often) and they’ve rekindled my long standing love of art and design (to the point I’m doing a degree from October in Design & Innovation). As hard as it is to watch Eliza struggle with anxiety, it’s also made her the strong willed and brave little soul she is today. Sometimes the things that make us incredibly uncomfortable can also make us realise our strength and determination too.
This was a post from ‘Finish the sentence Friday’ group on ‘Uncomfortable’ hosted by the fabulous Kristi from https://findingninee.com/
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.
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.
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!
***NOTE TO ADD – AUDIOBOOK IS IN PROGRESS ***
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.
Underdogs book 1 is available for purchase from Amazon (UK) inc kindle version. Also available on Waterstones website and Book Depository (Worldwide postage).
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.
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.
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