New Year, New Me?

As the year comes to an end I always tend to realise how much happens over the course of 12 months, even if my sense of time makes it feel like a whirlwind. This year has been one of constant change, much to the dismay of my Aspie self. So to recap the year, I want to talk about change, growth and most importantly recovery.

Let’s start with changes. One of the biggest was, of course, moving house. I moved from a suburb I had been in for 13 years to one that I hadn’t been to before. To a different train line, a different gym, a different pool (Ah!), and to a whole different council. I was justifiably terrified, but the new house meant a working shower and toilet as well as no stairs, which was a significant bonus.

The other major change was in my education, I’ve talked about this before, but I changed from going to a mainstream high school to doing my schooling via distance education. This change was huge, it meant leaving friends, learning how to set my own class schedule and remembering to eat regularly on my own.

Both of these changes ended up changing my life for the better and giving me communities that I never would have had before. The move allowed me to change gyms, a change that ended up landing me a job, as well as putting me in the right council for a local lgbtq+ youth group that has given me opportunities that I couldn’t have gotten on my own. Leaving school allowed me to recover and rehabilitate myself from the daily masking, falls and general strain that came with attending school, enough so that I will be attending a physical school again next year.

Next is medical and disability stuff, however, in this paragraph, it is specifically NDIS and physiotherapy related. The NDIS, as we all know, is a pain in the ass; a helpful pain in the ass but a pain none the less. This February I made an Instagram post talking about my NDIS renewal meeting, and then later on I talked about how a change in reviewers lead to my plan being gutted to almost nothing. The plan was changed early, my routine went from having support workers to help me work on independent living skills and twice weekly physiotherapy to having almost nothing. For months my social interaction was limited to appointments, my mum and the small monthly excursions I could cope with. My only friends being the people I play DnD with (more on them anon though). I was fairly isolated, only going to Pilates and the gym once per week each as we now had to pay more of the fees out of pocket. I would like to thank Watsonia Physiotherapy, Podiatry and Myotherapy for helping me (and my family) so much over the years, but even more so in this one, as they worked around everything and were super considerate all year to make sure I stayed on my feet and functional. The NDIS, after 6 full months of bargaining, came through with help. A functional fitness assessment proved I needed assistance and the new plan got me funding for a support worker to help me get home from work and OT to help me further develop strategies to cope with the world.

As I mentioned in the beginning, this year for me has been one of growth and recovery. I worked through a whole lot of internalised trauma that I had been holding onto; a big part being the fear that my disabilities were all that I could be and I would continue to lose pieces of my life as they progressed. Disability and chronic pain as a young person is hard to deal with. Comments and slurs get thrown around a lot and the schoolyard is no exception to that, but I have been learning not to hide my conditions for the sake of others. Being autistic has always been the largest point of internalised ableism for me, and I mask well enough that sometimes other people can forget it’s a part of me, but it is and I have to accept that. All of my immediate family is autistic, my parents and sister, so I knew my feelings of unease with being didn’t come from any lack of acceptance there (they are wonderful) so being able to take the time to unpack it is a luxury I am thankful for.

Being isolated, although hard, gave me the space to consider that the issues I had with me being Autistic aren’t actually based on my views of Autism, but on how the people at school had been talking about it. I worked on removing the idea that somehow being Autistic made me lesser or stupid by using condition first language, which is the same strategy I ended up using when accepting my other conditions. I started saying to people “I am autistic” when asked about myself, without hiding or looking away in shame, because it isn’t something that I ever should have been ashamed of. I still say I have BJHS rather than I am it, because it is separate to me as a person; I did start saying “I am disabled”, because contrary to common belief, disabled is not a dirty word.

One of the most helpful things with the process of acceptance for me has been actively putting related positivity into my social media feeds. Online creators such as Megan Jayne Crabbe (bodiposipanda), Jessica Kelgren Fozard, Annika Victoria, and DislocatingFairy have been a big part me accepting myself. Hearing similar experiences to mine from young people in similar situations, having what I feel seen and validated, all from someone who I look up to (because who wouldn’t look up to disabled lesbians in 50’s fashion) has been a great way of reminding myself I am not alone in my experiences, and I never have been. Body positivity has been a great tool for accepting a body that doesn’t always work, and tags like #babewithamobilityaid and surrounding yourself with body positive influences is where I started. Surrounding yourself with supportive people isn’t just online either, my DnD group who I mentioned earlier are some of the most supportive friends I have had, which is super important when you are working on accepting yourself. And of course to top it all off, Cyra Noavek from the Carve The Mark series, she’s so cool.

Now, to conclude this (far too long) post, I would like to remind you to take care of yourself. Progress takes time, the contents of this post occurred throughout the year and wasn’t easy by any means. Self love and discovery takes more effort than anyone is truly willing to admit so don’t be afraid to ask for help along the way. Happy holidays and early New Year.

– Darrell

Deciding to Learn from Home

So 2019 is holding some big new things, the biggest of them all being that I have left mainstream school. This is, as change tends to be, terrifying to me – and it certainly doesn’t help that I have no clue what my classes are.

There are so many reasons I could give for this decision but I’m not going to bother explaining that too much- instead I’m going to explain how I decided to do distance education.

Step one was realising that I wasn’t happy at school. I already knew that it was getting harder to motivate myself to get to school but it took me a while to even consider that it wasn’t just that my anxiety was getting worse. (Context: I came off of my anxiety meds in January 2018 after almost 7 years of being on them.) So I spent some time just using as many coping stategies as possible just to get through the day- this was roughly mid year.

Once I realized I wasn’t happy step two began- trying to find solutions. We talked to teachers, we asked for extension work, the whole shebang. This is where we got stuck for a while, we’d had meetings in previous years with the same issues and we always got the same answer “It will be better next year,” By the fourth meeting of 2018 I was so sick of hearing that phrase that I genuinely wanted to scream every time I heard it.

Step 3 was the worst part- looking at new schools. Mum and I spent a month or two researching schools. The one I prefered was too far away for us so we went and toured one locally with my dad. This is where it got hard, I was fine on the car ride in but for almost the whole tour I was either holding back tears or trying to cry as quietly as I could while dad tried to calm me down. It sucked, I felt so vulnerable and distressed and I didn’t have the right words to describe what was going through my head- I still don’t. But I knew that going to another school wasn’t the way to go. Thankfully one of my favourite cafes was nearby so we dropped dad off at the train station then got coffee and sandwiches (because coffee fixes everything.)

We took a break from looking for solutions for a bit after that, it was just too much to think about. It took about two or three weeks before I was ready to talk about school again.

Step four was figuring out if distance ed was right for me. We talked to our psychologist, psychiatrist, other doctors, family members. It was a lot. My sister had done distance ed for a year and had found it difficult so mum was a bit hesitant at first. I almost completely rejected the idea until we talked it through with the psychiatrist. But eventually we decided that it was best that I studied from home.

Step five, paperwork. So, so much paperwork. We had to get letters from so many people for me to even be allowed to do distance ed. I took a while to do my part of the paperwork. It felt very final. Like I was giving up on something and just leaving it behind. This quickly changed when I started doing work experience instead of going to school, I was significantly happier when I wasn’t at school and so I decided that it was time to finish the paperwork.

Step six was telling people. This was hard because they started to change once I said I was leaving. They were nicer to me and treated me as if they hadn’t been my friends for years already. I told as many people as I could either in person or over voice chat, it was harder than announcing it online but it felt like the more respectful thing to do.

I finished school on an ok note. I didn’t bother with a proper in person goodbye to my friends- I hadn’t been at school for a few weeks anyway. I sent them cards wishing them a happy holidays and thanked them for being there for me while I was at school but that was it. I was done with school and I was happy to move on.

Holidays are almost over now and it feels weird knowing that I’m not going back to school, at least not a physical school, and I still don’t know what my classes are. But I do know one thing; I can finally study Japanese after 3 years of asking to and I’m super excited. That and that I definitely made the right decision.

I’d also like to thank my mum for being there for me throughout this whole thing. I know that I was a pain in the butt for a lot of this process and I’m so glad we stuck with it.

Sleeping Bendy

Mum says I “sleep bendy,” I’m not entirely sure what that means but it makes sense. I think “sleeping bendy” translates to a few things that people don’t realize about BJHS.

I sleep bendy so I need more pillows to avoid injury in my sleep.

When I fall asleep in chairs I curl around them.

When I sleep wrong it means more pain for a few days.

I sleep bendy and it means that I am an excellent cuddle partner (who needs to worry about space when I can curl up into *the* tiniest ball ever.)

Sleeping bendy can hurt, it can mean paying extra for more pillows, it can mean using people as pillows when necessary (sorry mum), sleeping bendy means being tired because you couldn’t sleep because you were too bendy sometimes.

To all those sleeping bendy, it’s okay, keep doing your best. Sleeping bendy is better than no sleep at all.

Sensory Stuff

Autism does weird stuff when you’re overwhelmed.

I love swimming, it’s why we are travelling for the commonwealth games but when you’re autistic the things you love can get overwhelming.

I had forgotten to pack my swimmers, mistake number one, so I had to get new ones. The ones I got were in a style I don’t usually wear and I had to get shorts to wear over them, another new thing. I usually swim in indoor, chlorinated pools or the ocean and I was in an outdoor, salt water pool.

The water was cold and too shallow for me to swim in properly, I tried backstroke but the new swimmers plus the hot/cold contrast from the air and water started to cause sensory overwhelm. I couldn’t swim and I was desperate for the familiar feeling of the water, not a good time. I (thankfully) was able to verbalise the overwhelm and mum found an amazing alternative, the spa!

It was warm, chlorinated, under cover and deep enough to cover my whole body. Definite win. I spent a long time in the spa and by the time i got out the overwhelm from earlier and the anxiety of being in an unfamiliar place had passed.

Autism is funny sometimes, in the way that it makes little things, like the lack of chlorine in the pool, feel distressing.

So next time you see a person with autism trying a new thing, think about all the smaller new things inside it, you never know how much energy it’s taking them just to try.

Flying with BJHS

BJHS (Benign Joint Hypermobility Syndrome) is a pain in the everything to fly with.

I woke up at 3am for the flight and everything was okay, no joint pain. And then came the sitting in the taxi, and in the airport, and in the plane, and on the bus. Sitting down hurts because of the pressure on my back, cushions help but there weren’t any to use at the time so that would hurt by itself, add in that I hadn’t had my anti-inflamatory medication for a week and you’ve got a recipe for disaster.

Once off the bus breakfast and anti-inflamatories were my top priority, however medication can only do so much. So my next step was buying heatpacks, this took longer than expected (3 frickin hours) and the pain was making it hard to walk.

^ My nutritious breakfast ^

Once we got home I spent about two hours lying like this:

(Those things on my back are heatpacks. Aka: Life Saving Magic Bags)

^ The heatpacks are only $9 each! ^

In conclusion:

Heat packs = Yes

Hard chairs = No

Flying with Crohns

Our flight left at 6am.

This meant waking up at 3am, taxi pick up at 3.30am and we were at the airport by 4am for check in. Waaaaay too much early morning.

Last time Darrell flew interstate our anxiety was so high, they almost missed their flight. They did miss luggage check in and had to fly without their suitcase. It was awful, so stressful. Do not recommend.

So we were both very anxious about this flight. Of course when you are stressed, it makes Crohns disease flare up even more. In the week prior to leaving, I was spending a lot of time racing to the toilet with explosive diarrhea. It was awful and certainly didn’t help my anxiety.

On the morning of the flight I had my usual low residue breakfast, toasted English breakfast muffin with a slice of ham, but only half portion. I also took 2 Imodium (yummy), just in case, and no coffee :: sadness :: .

Arriving 2 hours early at the airport meant not only did we have heaps of time to check in, but also use the toilets without rushing.

We got an in-flight snack of a tasty croissant. Thanks to my Imodium it stayed put without drama, but I couldn’t risk the coffee. My book was bigger than the tray table!

Post 2 hour flight we had a one hour bus ride to our final destination. It was long and by this stage I was getting very nauseous. It was 7 hours with only a muffin and small croissant, I should have had more water to drink.

Happily the Imodium and small portions of low residue worked. My gut held firm (hahaha literally, Crohns humour is toilet humour).

We had arrived on the Gold Coast for the Commonwealth Games. 😊


About Us

We are a neurodivergent mother and child, with chronic illnesses.

Marita – mum, she/her pronouns. diagnosed with active Crohns disease when at 17. Currently unmedicated*, on a low residue diet. Studying to become a librarian.

*once I finish getting all my vaccines up to date I will be started steroids and immune suppressants.

Darrell – Teen, they/them pronouns.

Diagnosed with benign joint hypermobility at 13. Currently on anti-inflammatory medication and trying my best not to injure myself. In high school.