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
First written on 4th August 2015 & transferred from old blog site
It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.
We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.
I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.
Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.
Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.
There are four of us living in this house. I used to say three of us as we are the ‘physical’ ones but we seem to have an extra one here a lot of the time. Yes, there is myself, Eliza (9), Noah (4) and anxiety (the uninvited and invisible guest that randomly becomes visible, usually at times when you wish it would just bugger off). This year has been a bit rocky, my own anxiety took control over me earlier in the year for a while but I’m starting to feel like me again and that I’m now back in control. Eliza’s anxiety is usually around social situations, especially in unfamiliar environments but there are random times it just consumes her as if it’s just reminding her it exists. For nine years of age, she handles her emotions pretty well and refuses to crumble when it makes an appearance. It can be tricky in our house, Eliza and I can either bounce off each others anxiety and get by or we can feed off each others anxiety and have a day where we need a little space from each other or more structured days where we both have the same agenda as much as possible.
Eliza wasn’t always anxious, she was quite an independent, feisty and confident child. Until regression dropped by (another uninvited but slightly more visible guest) and took away her speech, some of her fine motor skills and reversed a lot of her skills in general. She had to relearn how to hold a spoon, how to hold a pen and draw but most of all she had to learn to be Eliza again but without her words and that made her extremely angry and frustrated. We relied on Makaton sign language for communication and through this she started to make sounds with certain words that she signed and she’d often sit in the corner of the room with her cuddly toys, whispering the noises or letters she could say as if she was practising what she had gained back speech wise. It took a few years for her speech to return enough for the pediatrician and speech therapist to stop documenting her as a ‘non-verbal’ child. I can remember on a few occasions that if she pronounced a word slightly wrong it really made her anxious. She’d be very cross with herself and get upset. A year ago she watched a video of herself when she was younger. She was signing animal names and making the noises that they make. Back then she had around 10 spoken words. She looked happy to watch it but anxious and then she told me that she is scared her words will go away again. Sadly nobody has a crystal ball to see whether regression will strike again or something else but she’s doing amazingly well for a girl who had to wait a long time for those words and skills to return.
At the time her speech started to return, her anxiety suddenly rocketed. Everyone assumed that as she began talking again, her anxiety would decrease but it did the opposite. We became quite housebound for over the next year or so outside of school hours. Supermarkets were an absolute no go area, she just couldn’t cope with people, noises, busy places, sounds, smells…. complete sensory overload! Suddenly she couldn’t even face the cinema, soft play, parks, restaurants….. anxiety was taking control. I often used to think that it stemmed from the speech returning, the fear that she’d lose the speech again so she was shutting herself away from the world and guarding what she had taken back from regression. Now she is old enough to talk about it (when she wants to) she was able to give me her own thoughts…. “I didn’t like busy noise…….. too many people……. my words get messy…. they might laugh at me because my words don’t always work…”
That fear and anxiety that people would notice how she said things, how she struggled to pronounce some words. How she needed processing time to answer questions and they might think she’s ignoring them. How she sometimes doesn’t know how to answer so you get a scripted reply from a TV show or a plain yes or no. How they look at her and see a child that is of certain age but her language ability is that of a younger child’s. That pressure to be what other people expected was already taking up space in her mind. Eliza is an extremely intelligent child with a wonderful and adventurous personality but in the past she has often been told she can’t do things by teachers, pediatricians etc. It’s not that she can’t actually do things, it’s that they assume she can’t and therefore don’t even bother giving her a chance. But they tell her she can’t do stuff and that impacts her anxiety and her confidence partly as she’s unsure whether they are correct but also because she feels wronged by their decision. She may well not be able to do whatever it is she wants to try but at least let her try, that’s all she wants. Anxiety and her autism diagnosis were used on more than one occasion by certain people as an excuse to why they made decisions for her instead of with her. Eliza was also bullied for a while, both emotional and physical attacks. Her bully was a huge factor to her increase in anxiety to the point she’d have a panic attack in the car and couldn’t breathe if we even drove near where he was. (And sadly her being bullied was not taken very seriously by school at that time and was pretty much ignored).
Despite anxiety taking control of Eliza a lot of the time, she was still able to do ballet lessons, street dance, trampoline club, Rainbows (part of guides/brownies but for younger girls), after school cooking class and sports group and, possibly the best thing she ever did, equine therapy. So many people wrote her off, used her anxiety and her autism diagnosis as an excuse or simply went ahead and made decisions for her so we found a bunch of people/activities that welcomed her (and her anxiety) and allowed her to be herself and through them she gained confidence, pushed her own social boundaries and comfort zones, learnt social skills and improved her speech. Eliza was changing and finding her place in the world and she was starting to take control of her anxiety.
We moved house a couple of years ago to a different County which meant new area, new people and places, new school…. Lots of preparation went in to the move and she’s really changed since living here. We are lucky to live in an area that is close to a forest so we see lots of wildlife and have plenty of open spaces but we are less than fifteen minutes away from shops and town by car. Her School is amazing and she is thriving there. Reading at age 10-11 years, working hard in all lessons, learning to play a brass horn and the piano, taking part in sporting events and art shows. They just ‘get’ her completely. They support her greatly but they also allow her the independence she needs and most of all, they allow her to be Eliza. She still has anxiety at school although nowhere near as often as she did but she can get past it quicker with their support and understanding, she’s happy and comfortable enough to show them she is anxious but also able to take back control.
The last twelve to eighteen months has held a lot of changes for Eliza. Anxiety remains but rarely gets to show itself as she’s so used to it now, she’s able to distract herself or go have quiet time somewhere. Even on the rare occasion that anxiety starts to control her and she gets quite loud, tearful and stompy, she battles through it and attends whatever it was she was going to anyway. She won’t let anxiety beat her. She’s enjoying trips to the cinema again as well as the theatre for shows and plays. She’s loving being outdoors and has a huge list of places we can go, the boating lake is one of her favourites (which is crazily one of my least favourite places because, well, I just hate boats and lakes/rivers/seas/oceans….. but we go because she likes it there and she’s yet to ask to go on a boat lol). When anxiety does start to niggle at her, you’ll find her at the top of a hill, top of a climbing frame or the highest floor of a building where possible. This is how she copes. She likes the space and the height so she can look at her surroundings and calm down whilst deciding on her next move. Even shopping is back in play although she absolutely detests a couple of places that have very narrow and highly stocked aisles, she has a few she enjoys visiting.
As for me, my anxiety is fairly under control. I still have days where it seems to have a date with depression and they come along in tag team style and kick my arse for a while but I keep going. Therapy has helped and I remain on medication for the time being. I talk to a select couple of close friends about it which helps. I won’t go in to the long story of personal details of what caused my anxiety but I’ll share how it felt. Earlier in the year anxiety took complete control. I was having panic attacks, couldn’t walk in my own town without feeling that my legs were on fire and my vision blurring. I felt sick leaving the house and even going to a friend’s house made my legs shake. Even walking my son in to nursery, I felt like I’d pass out. A heavy-set feeling sat constantly on and in my chest and my heart was racing. I denied it for a while but it persists until it thinks it’s winning. Anxiety, oh how I hate you!
Self care is important, it really is and it’s something I have ignored for far too many years. I’m a masker. I hide behind a smile that is believable but fake. But I got away with it for so long it became the ‘norm’ and I forgot to actually look after myself. Instead, I filed everything in my brain to be sorted another day. But I never sorted it, I just added to it…. and added to it…. and added to it until my brain was full of things that I either didn’t want to think about or didn’t give/have time to think about. I couldn’t hold it in anymore and it was making daily life incredibly difficult. After reading some inspiring words that a friend had written about their past with anxiety, I made myself an appointment with the GP and got the help I needed and had avoided getting for so long. I didn’t want to notice my anxiety, I didn’t want to let it in. But there it was, that uninvited guest booking itself a room in my head. Anxiety wants to win. But I’m not going to let it.
Nowadays it’s a tug of war relationship, some days anxiety slightly leads until I pull it back over the line again. The way I get through it – I keep that hot tingly burning feeling in my feet as much as possible. When my legs start to burn I know anxiety has picked up the tug of war rope and fancies a test of strength. This is when I distract myself and find something to do (walking or rock painting are winners here). If the burning feeling gets above my waist level, it’s time to go home because anxiety is pretty much setting fire to the rope at this point and I’m losing my grip. Sometimes I just need to be home and have that safe ‘made it’ feeling and have a cup of tea. Sometimes I need short nap to regain my energy for the next test and have a cup of tea (Hey, I’m British. It’s what we do. Tea is the answer to everything!).
***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.