When you are too autistic or not autistic enough

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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 **

Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel will interest you!

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.

You can order the book here: Guerrillas order page.

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You can see Chris’s incredible autism advocacy at Autistic Not Weird

If anyone wishes to have the above poster image emailed to them so they can print it, email it to others etc then please send me a private message over at Living with Blooming Autism.

 

 

A letter to my daughter’s school

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.

Eliza’s Mum

**This was a blog I wrote for and was published on the Firefly Blog

10 things I’m looking forward to in the future

  1. 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.
  2. 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.

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    Eliza & Noah, early 2018 and looking like they are mid way through a song!
  3. 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).
  4. 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.
  5. 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!
  6. 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.
  7. 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.
  8. 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 42864303_2086616944936620_879293476095655936_o
  9. 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.
  10. 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

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Interview with the author of Guerrillas – a novel with special needs heroes written by Chris Bonnello

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.

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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.

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Chris Bonnello – Autism Advocate, Writer , Chess Geek… Also known as Captain Quirk!

 

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.

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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.

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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.

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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.

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Ten photo’s I just can’t delete from my phone

This week in ‘Finish the sentence Friday’, the prompt is ‘Share 10 photos from your phone’ so here they are (It took me a while to choose ten as I have hundreds saved on my phone!!). You’ll see there is no theme or pattern, my photo’s are as random as daily life.

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This is Rockingham Castle, about fifteen minutes drive from my house. Small but incredible. I’m a real History geek and I love visiting castles and historic buildings. I visited this one over summer during my 6 days of being child free, when the kids went away with their dad. The weather was incredible and I had the company of a friend I’ve known for more than 25 years.

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These two argue and fight as siblings do but they have a beautiful bond that sometimes I’m lucky enough to capture in a photo. Noah loves sitting with Eliza but even at the age of four, he understand and accepts that she doesn’t always cope with contact and she needs her space. They really do love and understand each other.

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Noah visiting one of our local Country Parks. We’d painted rocks with colourful pictures and uplifting quote on, and hid them for others to find on their walks. I love that time of year, when greenery is starting to show again but there are still crisp leaves on the ground. Warm enough to not need a huge coat but cool enough to get a hot chocolate in the cafe after.

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In June of this year I visited Scotland for the first time in my life. Edinburgh was amazing, I loved the Castle and the historic streets. I visited the cafe where J.K Rowling wrote Harry Potter when she was poor and not famous at all. I walked the streets that were supposedly the inspiration for Diagon Alley. I saw men playing bagpipes in kilts and a guy dressed as William Wallace. One of my favourite photo’s is the one above. It might not look like much but that building you can see in the distance was where Mary, Queen of Scots was kept prisoner many years ago. You can read about it here On the 2 May 1568 Mary, Queen of Scots escaped Lochleven castle. Yep, I love history.

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Eliza is always so happy to see Chris who runs Autistic Not Weird, he’s become a close friend of ours and we are lucky that we get to see him fairly often thanks to him living only one hour away. He is one of our very favourite humans. The frame they are holding was made by me. I love arts & crafts. I made one last year and again this year so I think I started some kind of birthday frame tradition! Eliza is so comfortable with Chris, confident enough to tease him (in a fun way) and she even has her own nicknames for him. He is a friendly, caring and fun guy that advocates so hard for autism awareness and acceptance. He’s also an incredible writer and I have had the privilege of reading most of his work to date. His first novel is going to be published very soon, you can check that out here (Yes shameless plug and no, I don’t care because I LOVE this book) Guerrillas by Chris Bonnello It’s a book full of Characters that are the heroes and they have various special/additional needs including autism, PDA, ADHD, anxiety and down syndrome.

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Back in January, Noah and I went with his nursery on a trip to London. We had an amazing time and visited The Natural History Museum and the Science Museum. A day filled of space rockets, pictures of the moon, dinosaurs, skeletons…. he had a great day. First time on a coach for him as well as first time in big, busy and huge London and he coped really well and wants to go back again another day.

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Back in 2016 I was able to see and walk through the carriages of the Hogwarts Express. I’m a huge Harry Potter fan so this was super exciting for me. It was the first time you could walk in to No.4 Privet drive too (And I did, and I was all emotional!!). I’ve been to the Warner Bros Studio Tours three times now, It’s time I booked visit number four…

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One of my favourite places to visit in London is The British Museum. I’m a Classical Studies student so this is where I get my geek full on lol. I can spend hours in the Roman section but the place you’ll see me the most is where the Ancient Egyptian statues and mummies are. There are so many amazing photo’s I could keep on my phone from the museum, but this is the one that I love. Who is she? She is Hathor and she’s always fascinated me for many years. Twelve years ago I beat anxiety and a fear of large amounts of water to get in a tiny wobbly boat and sail across to the Temple of Philae. Why? Because it’s linked to Hathor. As we touched land I cried (partly the relief that I could get out of the boat, mainly because I was actually standing there at the temple). “Hathor was the golden goddess who helped women to give birth, the dead to be reborn, and the cosmos to be renewed. This complex deity could function as the mother, consort, and daughter of the creator god”.

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This time last year I did a graffiti tour of London with a friend. She needed photographs for her photography degree and she wanted some company. We had a great day and very sore achy feet from covering miles and miles of London. I saw this on a wall next to some other posters and graffiti and just loved it. It speaks for itself really.

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I LOVE THIS PHOTO. Taken on Eliza’s 9th birthday earlier this year and with all three of us being a bit cheeky. I love it because it reminds me no matter how down I feel when depression kicks in, I have these two little humans that are my world. When my anxiety is taking control, I look at photo’s like these. These are my babies. I grew them. I raise them. I keep them safe. They are everything. We’ve been through so much yet look at us all.

 

This week’s prompt is hosted by Finding Ninee and Sporadically Yours


 

 

The time I found myself in a heated discussion about high and low functioning autism

***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).

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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.

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