Seeing it’s Autism Awareness month it seems like a good time to talk about my experience as a carer for someone with it. Though it’s not Carers Month, granted, and we should be listening to people with autism rather than me. But autism affects whole families and communities.
In case you don’t get to the end of this rather long piece, the take away message is: don’t stare/chastise/advise. If you can, offer help.
I don’t tend to write much about my personal experience of autism because it feels like an invasion of Rohan’s privacy and a lot of it is just plain hard and unpleasant. And Rohan is adorable, as well as being hard work.
In my personal house style I’m not using a capital for autism unless I refer to the medical diagnosis. To me, a capital makes autism feel more stigmatising and powerful, while I’d prefer that the differences autism creates were accommodated and accepted as normal. So I guess I’m looking at it as like, “I have indigestion”. Rohan has autism.
Rohan has an atypical representation of Autistic Spectrum Disorder. One of his kindy teachers once said, “He breaks a lot of rules,” and I didn’t really know how to reply. I felt acutely apologetic for his behaviour as a preschooler (while wishing his differences were respected), and yeah, he breaks rules like a rockstar! He actually escaped from Special Needs kindy one day, and that place is high security with a carer ratio of 1000:1.
Anyway, Miss Michelle followed up with, “He breaks a lot of rules…”
[Blank look from me]
“…of the diagnosis.”
Right! She didn’t mean around preschool, she meant the guidelines of diagnosis. Which just goes to show what a wide ranging thing autism is. Rohan is often friendly, social, loves to engage with people he knows, can express himself very well about things he likes. He can seem very bright but is very slow to learn.
In some areas he has severe autistic tendencies. When he tries to form letters it’s beautiful and heartbreaking. It takes so much effort for him, while many other kids have held pens effortlessly since they were two. He’s been trying for that long, but still struggles with the motor control.
This was our morning:
(And keep in mind, Rohan is seven and half, not two.)
I was half awake when Rohan started screaming and shrieking. Not for any identifiable reason, just to let us know he’s awake, I guess. And maybe he likes the sound or feel of it. Maybe he’s too tired or can’t get his brain into gear to say, “I’m awake! Come and get me,” or to walk out of his room and find us. (We should start modelling that phrase, actually.)
Brian got him up and took off his night-time nappy, and Rohan kept intermittently shrieking, perhaps because he likes the sound. This is really painful when you’re dressing him and he screams/shouts in your face.
He was also throwing around his favourite weird words like slammanmabot and dockabicky. (These can be quite entertaining when your ears aren’t aching.) Stepworm is another.
Brian took him to his study and Rohan kept intermittently shrieking. Brian started to get annoyed, “Stop it, Rohan.” so I called Rohan to the bedroom, and he came eventually, which was great. (He comes when you call him about half the time. It takes a while!)
We had a nice hug (with some more shrieking). I tried to get him to talk about Stradbroke Island and got a few answers out of him.
“Did you like the lake?”
“I liked the lake.”
“Did you like swimming?”
“I liked swimming.”
Eventually I brought him to the kitchen and gave him his medicine. Medication has saved us, really. Right now he’s on Vyvanse and it’s a miracle. When he switched to it last year we saw an instant improvement in his language comprehension and fine and gross motor skills.
Ro ate some toast and tomato, yay! He’d lost weight last time the paed weighed him, as Vyvanse decreases his appetite and makes his tastes more sensitive. He watched Youtube as he ate breakfast.
I finally got to sit down and have my coffee (which should happen before all this!). I try to get up early for peace and quiet before anyone else wakes.
Then I heard tinkle-tinkle in the sink and went to investigate. Rohan’s pjs had fallen down around his ankles and he was doing something with water and lots of margarine in a bowl in the sink. Sigh. I cleaned up the margarine on the cupboards and bench and he asked to go to the toilet.
He always likes company but is almost independent on the toilet (except for bottom wiping) and hasn’t put his feet in the bowl for a few years, so I went off to get his clothes from his bedroom. I came back to him dancing in the lounge room half naked and the smell of poo. He had a few smears on his body and the toilet seat, so obviously he’d tried to wipe his own butt, which is great. But he needed a shower, so I put him in the shower and gave him a good wash, and cleaned up the poo on the toilet seat and put on another load of washing.
I am so grateful we’ve passed toilet training. 2013 was my year of poo. Lol. Not sure when he’ll master bottom wiping.
I laid out his clothes and he dressed almost independently, though needed me to point out his pants were going on backwards, and he asked for help with his zip and press-stud.
Now he’s playing iPad on the lounge.
I guess what I want people to take from this is that being a carer for Rohan is hard. It takes a lot of time, effort and patience, and when I imagine what it would be like to have a seven year old who simply wakes up, comes in to my room, says hi, gets a drink, goes to the toilet, can ride a bike around a quiet street with other friends… does all those usually easy things…I wish that was us.
But you know, just last Tuesday I was stopped at the lights with both kids in the back of the car, and I thought, I feel like I’m coping. I can cope with this now. I felt that way because both kids had been great that day. They’d come to Writers Activation with me, played their iPads. We’d had lunch and Ro hadn’t screamed too much at Sushi Train. No one had glared at me and blamed me for his behaviour or advised me how I could parent better.
A lot more goes into making me feel that I can cope, too.
My partner is amazingly supportive and great with Rohan, though Rohan’s challenging behaviours fray our tempers and sometimes we argue about how to handle them. He encourages me to chase my writing and OCR obsessions which give me the intellectual, community and physical stimulation I need. We have wonderful babysitters who understand and are patient with Rohan. My dad has been really helpful, lately, looking after Rohan for whole days while I’ve worked on stuff for Contact, the S.F. convention. My partner’s parents have helped out, too. Rohan’s school is also great. He attends a mainstream public school and I can’t think of how it could be better. The teachers and children are amazing. When a kid with Downs does a cartwheel she gets twice the applause of a kid without special needs.
The kids get it.
And Rohan is a lovely child. When he’s not shrieking or hitting he is great to hang out with and talk with. He loves exploring, walking and going on boats, and he is very huggy, he’s totally into Macklemore (god help me when he starts to repeat the lyrics). He enjoyed the Colour Run at school, and smiled, holding his assistant’s hand while the parents carefully sprayed him in colour. He registered it when his schoolmates wouldn’t talk to him one day (because he’d been shrieking and hitting the day before — thankfully he doesn’t do too much of that at school), which is great because it’s peer pressure encouraging him to behave appropriately.
Interestingly, he hasn’t gone through the gender obsession many kids go through. He still struggles to get pronouns right. Maybe he’s advanced on that one and gender categories aren’t so important. But he does have problems perceiving patterns, so possibly hasn’t picked up on the typical gender cues.
He’s asking me for more toast, so I better go do that…
Toast is cooking.
Let’s not forget Jasmine, the nine year old big sister. Imagine how hard all this is on her. I’m not sure that her teacher understands that sometimes she’s up until 11 or so because Rohan won’t stop shrieking, and it’s hard for her to concentrate on her homework if he’s playing up. She misses out on a lot of my attention which he absorbs, which is really fucking sad.
Things could be worse.
If you want to help carers of people with autism, do. The best way to do that, when I think about it, is to spend some time with the person with autism, and/or the siblings, and give the carers a break. Find out what the person with autism is into and do that with them. I’m really grateful when parents from Jasmine’s school take her along to events. While most younger siblings can go along to shows/events, this is really difficult for us because we don’t know if Rohan will be quiet, and most audiences won’t tolerate a shrieking audience member. Hostile glares hurt.
Accept our differences. Rohan is really scared of birds, cats and dogs, and while you might laugh at that, Rohan has tried to run on the road several times to get away from a dog, and some people with dogs huff and/or roll their eyes. And I think, “If you find my son’s reaction unpleasant, how do you think this is for us? We cope with this everyday. We plan for it and accommodate it. And it’s just one of his challenges.”
Don’t shun or stare at people (and their families) who are misbehaving. Forgive us when we’re grumpy or our hair is all over the place. Don’t buy us more toys or give us advice or tell us about what you read, or saw on TV, or about this great new treatment for autism — unless it’s scientifically tested and proven. Gah, I didn’t want to do the don’t list.
But it’s worth mentioning that if we know a person with autism, we’re probably the expert on how to help that person, and most of us have done 300 hours of therapy with professional speech therapists, OTs and psychs. Not to mention our own reading and thinking.
So we know a lot, and we’re also possibly full (like a cup is full) of information on autism. We live with autism every day. We’d probably rather read science fiction or romance or some weird combination of both.
Even if we’re just starting out on our journey of discovering our kid has autism, we might not want to hear about what you just read/saw about it. Those early months of diagnosis were heart wrenching. I spent a lot of time following Rohan around parks and at home, stopping him eating rubbish or wrecking and breaking things, while crying and wondering how (if) I’d survive autism.
Again, what would have helped most would have been breaks away, to process what was happening with us, and to think about something else. To feel that my life wasn’t going to be swallowed by autism, and that I might write an okay book and look hot in a bikini again one day.
Anyway. Life for people with autism, and their families, is what we all make it. Include us if you can, get to know us, and help us have a break.
Thanks for loving us, and for your patience when we can’t do what others can.
If you have any thoughts, feel free to comment respectfully, especially if you’re a carer of a child with autism who has different views to mine. Or a person with autism. I want to hear your voices.
Thanks for reading.
I was touched this morning to receive a handwritten rejection from Marcus at Gollancz. This is really encouraging feedback! And good timing too, as I might have the chance to pitch Spliced at Contact. Spliced still needs a little work but some parts of the puzzle are right!
Of course rejections make me a bit sad but this one is tempered by an acceptance from Apex Magazine! They accepted “Uncontainable” for publication. It’s a story inspired by Autism and creepy long coats.
This is my first international professional sale and doesn’t quite seem real yet. Big thanks to Rohan who occasionally says amazing things, and my friends who critiqued the story and bounced ideas around.
It’s only a little over a week until Contact, the national SF con in Brisbane. If you’re local grab a membership and come check it out! Memberships start at $60.
I can’t wait to see most of the awesome writers, critique buddies and editors I work with. Looking forward to meeting some online friends in real life for the first time, too. Yay!
There might be spoilers in here, depending on what you call a spoiler.
I saw 10 Cloverfield Lane last night on the recommendation of a friend who said it was being called one of the best science fiction movies to come out in recent years.
It was great, but I wouldn’t say it was science fiction. What I did find interesting about the movie is that it sits comfortably across a few genres, including thriller and teen horror, and a smidgen of science fiction. It reminded me of movies like Cabin in the Woods, Saw, Ruins and Wolf Creek.
This fluidity across genres was one of the strengths of the film. It kept me guessing, like Michelle, the main character, what was real in the film’s world and what was not.
It had me on the edge of my seat in a way I didn’t like at first. In the early scenes I thought I might soon be walking out of the cinema, and I had to check the synopsis on IMDb for an idea of what this movie was actually about. What I read reassured me and I settled in and enjoyed the movie, feeling pretty sure it wouldn’t take a direction I wouldn’t like.
I guess it’s about genre markers…I know what to expect from certain genres, and usually I feel safe watching science fiction films. And this didn’t feel like a science fiction film, apart from a few small potent doses.
I like horror and some level of gore, but I don’t like torturey movies. And, yay! there wasn’t any significant torture that I recall.
I liked the way I didn’t know what to believe, and how what I believed kept changing. I loved the characters, especially Michelle, the kick-arse main character.
So, yeah, it’s a really good and interesting film. I barely remember the original Cloverfield, but have a vague sense that I didn’t like it, but I loved Monsters which I saw around the same time.
Although it really isn’t very science fiction, I highly recommend 10 Cloverfield Lane.
It’s March already, how did that happen?
That means that Contact2016 is just a few weeks away! Contact is this year’s national science fiction convention, in Brisbane over Easter. If you’d like to know more about it, or me, check out this link to a profile I wrote for Contact. Take a peek at the other info on the site, like the program and memberships/day rates.
If you live in South East Queensland or Northern NSW and are serious about writing fantasy or any kind of weird stuff, I highly recommend attending all or some of this event.
Natcon comes to Brisbane about once a decade, and it’s an event unlike any other. There’ll be a range of creators and fans there at all levels of their journey, from those just starting out to professional writers, agents and publishers.
This year has been full of interviews for me! I’ve interviewed local playwrights on stage at the Arts Centre Gold Coast, and hosted a kaffeeklatsch with Gabrielle Tozer at REaD Cafe for Somerset Celebration of Literature.
On the Gold Coast, Writers Activation is still hosting workshops and supporting local authors. Australia Fair has kindly extended our lease, and we’re building a warm community of writers. It’s great to showcase local books and writing events in our windows, and offer advice to writers who are starting out.
This morning I attended Somerset Celebration of Literature and a workshop with David Burton, which was lots of fun. Few things are more fun than getting together to talk about stories!
If you’re looking for something good to read, check out these books by Ben Aaronovich one of the guests of honour for Conact. And here’s a book review…
Last year brought many wonderful things to me, the best of which was some free time because this little fellow went to school.
I used that time to pursue local creative opportunities to extend and enrich the local writing community through Writers Activation.
There is heaps happening on the Gold Coast for writers and creatives at the moment. It’s an exciting place to be!
If you’d like to see the full text of this temporary street piece (twice written and twice washed away by the high-pressure hoser) head to YouTube.
I was thrilled to receive a Ditmar Award for Best New Talent in Australian Speculative Fiction. I also finished another novel… this one is called Spliced and I’d love to see it published one day. It’s in the editing phase.
It was great to have time to ramp up my fitness and tackle four obstacle course races (some in fancy dress) and enjoy some lovely bush walks and explore local parks.
I was delighted to to sell this article on obstacle course racing to More Gold Coast.
It was great to see my school friends at my 20 year reunion, omg!
Thanks and love to my family…
Thanks to my friends for their love, support, and the laughs and stories we’ve shared.
In 2016 I’m looking forward to doing Spartan, Tough Mudder and taking Jasmine along for Raw, her first obstacle course.
I’m also looking forward to creating some digital poetry art workshops in partnership with the Gold Coast media lab and delivering Contact, which is just 12 weeks away.
All the best for 2016!
Be kind to your alpaca.
Welcome to the NAFF race for 2016. The National Australian Fan Fund (NAFF) was created to assist fans to travel across Australia to attend the National Science Fiction Convention (Natcon). NAFF assists fans to travel to the Natcon and covers the costs of airfares and accommodation. The Natcon donates a convention membership. This year’s NAFF race is to the 55th Australian Natcon, Contact, which will be held in Brisbane during Easter, 25– 28 March 2016. It is expected that the winner will produce a report of their trip, engage in fundraising to support future NAFF races, and to help administer the NAFF race for the following two years. All Australian fans are eligible to vote.
The voting process contributes to the fundraising so each vote costs $5. You are more than welcome to donate more than this amount! Votes are being collected by: Tehani Wessely and the candidates. For more…
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Kate Foster is a fabulous writer, editor, publisher and friend, and it’s my pleasure to host her as part of her blog tour.
Happy Christmas from Kate and Winell Road!
When Winell Road: Beneath the Surface was released back in April, Kate didn’t embark on a great deal of promotion. Because of a lot of ‘things’. So, to make up for that and to kick off the festivities for her favourite time of year – Christmas! – she’s taken Winell Road on a little tour, hoping to spread the word and introduce lots of new young readers to, what she believes is, a great big dollop of sci-fi fun and adventure.
Here’s a little info…
Twelve-year old Jack Mills lives at 5 Winell Road and has probably the world’s weirdest neighbours. Like freakishly weird. And to top it off, he lives with Mum: nosy, interfering, a hideous cook, and Dad: unsuccessful inventor of the Camera Belt and Self-Closing Window. All in all, it’s a boring, embarrassing, dead-end place to live.
So when Jack arrives home from school one day, a close shave with a UFO is the last thing he expects. But the fact it doesn’t abduct him, and that no one else, not even Mum, sees the gigantic flying saucer hovering over the street, adds a whole new layer of strange.
Soon after, an alien encounter threatens Jack’s life and he becomes embroiled in a galaxy-saving mission. With the assistance of his new neighbour, frighteningly tall Roxy Fox, he discovers Winell Road is hiding secrets—secrets Jack might wish he’d never uncovered.
If you’re still not sure, here’s a couple of reviews…
‘Winell Road: Beneath the Surface is a fast-paced middle-grade adventure story with the feel of Men in Black. Jack is a smart, resourceful boy with more abilities than he’s ever dreamed off, and he finds out that the world is a far stranger place than he imagined. The action is non-stop and will keep readers riveted.’ examiner.com
‘This book will work wonderfully read aloud in class. There are enough cliff-hanger chapter endings to keep them begging for more. It will also promote discussion about making snap judgments while providing plenty of scope for related art projects.’ Buzz Words Magazine
Go to Goodreads to see a few more.
Kate is an Englishwoman on the Gold Coast in Australia. A middle grade writer, freelance editor, the editorial director at Lakewater Press and all around lover of the written word, she is ruled by her three sons, husband and spoodle pup. Not one to have a quiet day, she spends her free time mentoring new writers in contests like Nest Pitch and Pitch Wars, judging writing contests and helping out at Writers Activation on the Gold Coast. Other than that, she likes laying in bed or by the pool with a book!
It would make a great stocking filler for children. BUT, if you’re feeling particularly lucky, she’s giving away three signed copies just in time for Christmas! Yippee!
GO BUY IT!
If you don’t win, then the book is available all over the virtual world.