#but I am autistic and wasn’t accommodated until I actively chose to start doing it for myself at 17

[fredthedemonpartner]

Having dissociation be your main coping mechanism for your entire childhood and knowing that you’ve had many traumatic experiences feels like your memory is a bookshelf that should be full. Each memory is supposed to be a book and your shelves should be full, but at some point you took out every book with the letter Q in the title. But all the books still stand straight despite the gaps and on a good day you can convince yourself that enough are there for it to be fine, everyone has books that get lost or damaged or never make it on the shelf to begin with, until you talk to someone and they say something that reminds of a book you know you had but when you go to pick it off the shelf there’s a gap where it should go. But you know the title didn’t have a Q so why isn’t it there, then you realize that as a kid you couldn’t really tell the difference between Q and O. And looking at the shelf suddenly it’s a lot more bare than you realized, too much to be explained away by your general untidiness and leaving books stacked to the side out of order, at least you can still find those ones if you remember they’re there. You can see the shape and size of the missing books and sometimes you can even guess what they contained based on the bits of titles or authors you vaguely remember, but the poor copies you try to make stand out worse than the original gaps. They’re like folders with what little information you can remember that are far too wide and thin to fit well on the shelf, leaning and sticking out past the spines around them. And your fingers catch on them as you run them along the spines of the books, interrupting and frustrating your browsing occasionally even giving you paper cuts. And now you find yourself shelving new books on the most recent shelf, holding a book with Q in the title, stuck between the urge to get rid of it asap and the fear of losing it forever that makes you want to sit down and read it over and over, annotating the pages and writing a whole separate copy just in case because you’d rather have a thousand paper cuts than look at another shelf with more empty spaces than occupied ones.

[mikeyd1986]

MIKEY’S PERSONAL BLOG 127, October 2018

On Monday morning, Mum and I visited the Bayside Specialist Centre located in Patterson Lakes. It’s hard to explain the source of my nervous energy surrounding my first appointment with consultant psychiatrist Dr. Ricardo Peralta. Personally I do have some rational reasons for getting so worried and worked up about it including the whole new experience of seeking psychiatric treatment for my mental disorders and placing my care into that of a stranger. It’s also difficult to know exactly what to expect during the session. https://www.verywellmind.com/before-your-first-visit-380651

Considering I’ve waited over 5 weeks to see him, I’m making it a big priority of mine to get as mentally prepared as possible. Now I’ve only got one more week to wait until I hopefully get the treatment I need. The good news is that, by doing my research first, I’ve avoided some dodgy psychiatrists who shouldn’t be practicing after the reviews I read about them and also a few that charged fees that were very unreasonable. https://www.yourhealthinmind.org/psychiatry-explained/your-first-appointment

In contrast, Dr. Ricardo Peralta seems pretty reliable, decent and professional so I should be fine. I guess the purpose of today was to have a visual sense of where Dr. Peralta’s private psychiatric clinic is located and also have an idea of where to park my car and to access the centre. It did give me some peace of mind as Patterson Lakes is a lovely coastal town and much quieter than the area which I live in. Plus the centre is very close to the local shops, restaurants and cafes so there are plenty of positives to take away. https://nepeanspecialistgroup.com.au/specialists/dr-ricardo-peralta

On Monday night, I went to a Boxing small group training session at CinFull Fitness in Narre Warren South. Tonight was a challenging class for me on a few different levels. Socially it’ll always be difficult for me to fit in, although I did get recognised by a guy named Andrew and briefly chatted to the others. The problem lies in lack of shared interests and being comfortable enough to open up more. Yep that’s 32 years worth of self awareness right there.

My biggest fears often rise to the surface whenever I’m participating in high intensity physical exercise like a boxing class. Will I be able to handle it? Will I be able to keep on top of my fatigue levels? Will I be able to keep concentrating? I’ve had close calls in the past but never once passed out in a class. I think that would be the ultimate fear for me but thankfully Cinamon Guerin is very mindful about this and my limits when it comes to physical activity.

Tonight we did a combination of boxing drills and cardio exercise which required a lot of mental effort and memorisation of combos. I was partnered up with a girl named Jade who seemed to be a beginner like myself. Of course there was lots of squats, push ups, mountain climbers, Russian twists, star jumps, crab walks and wall holds and I can feel the burn pretty quickly. The most important thing is that I’m constantly trying and never giving up, even when I do struggle and need to take a break.

On Tuesday morning, Mum and I drove down to Mornington to visit Mentis Assist, which is an NDIS service provider specialising in mental health. Honestly I really had no clue what to expect out of “dropping in” to the head office but at this point I was out of ideas. It took a lot of courage and effort to come down to see if they could give me a sense of direction with my NDIS plan. I met with Matt who is the NDIS intake co-ordinator and Tracey who is the NDIS Team Leader. They led us into a small office space to have a discussion. https://mentisassist.org.au/get-in-touch/contact-us

Now the nerves were kicking in fast. Luckily I had my purple display folder filled with notes, information brochures, letters and my official NDIS plan so fall back on if I really struggled to express myself. Thankfully both Matt and Tracey were both friendly, casual and accommodating. They didn’t simply put the pressure on me or ask “What Do You Want?” with impossible expectations on me. It’s difficult when you only have a vague idea yourself.

Instead they asked structured questions about things in my life that I may or may not need some assistance with...social skills, decision making, budgeting, mental health support, counselling, group community activities and life skills development. These were some of the important ones for me and my plan did make some degree of sense to them. https://mentisassist.org.au/what-we-do/our-programs

I signed my first ever service agreement with them and it was a surreal moment for me, that I was finally making some progress and getting myself unstuck from the ditch I was in. Compared to last week, I am feeling a lot more hopeful and optimistic about actually doing something with my NDIS plan and funding and also that I’ve chosen my main provider carefully. https://mentisassist.org.au/ndis

On Tuesday afternoon, I caught up with Tori Norris who is the program co-ordinator for the Men of Doveton group. This was pretty confronting territory for me as I don’t usually open up about my feelings and I felt like I needed to in order to gain closure on this issue. The fact that Tori believed that I deserved to graduate the program was a bit unsettling for me and yet I chose to accept her offer. Her motivations were genuine too. Lately I haven’t had much self-belief and so maybe this was what I needed. To show myself that yeah I do deserve to be successful and have good things happen for me.

On Thursday morning, Mum and I attended the NDIS Plan Implementation information session held inside the private function room at Bunjil Place in Narre Warren. I had a lot of expectations leading up to this info session considering how confused, lost and stressed out I’ve been feeling since receiving my first plan. So it was a relief to hear that other participants and carers were voicing similar concerns and frustrations about their own experiences. No longer did I feel alone in this journey and now my feelings can be validated and heard instead of shoved under the carpet. https://www.ndis.gov.au/participants/understanding-your-plan-and-supports.html

Today’s info session was hosted once again by Sharna from the NDIA. She broke the presentation up in two parts. The first half focused on the different sections of the plan as well as the three types of budgets: Core, Capacity Building and Capital and how the funds are managed. In the second half, she talked about the importance of reading the NDIS Price Guide and turning your plan into supports by connecting to providers, negotiating supports, making a service agreement and then making a service booking. https://www.ndis.gov.au/finding-and-engaging-providers.html

Bringing my Mum along felt like a wise decision so that she could be educated about the NDIS system and just how complex it is to understand and learn. Whilst it was unsettling to hear the negative feedback from several people in the room, it was also justified and made me feel like I wasn’t the only one going through these struggles. It was good to note that more changes and a new plan format will be introduced from mid-November so hopefully improvement is on the way and things will eventually get easier for NDIS participants and carers.

It was also great to see Amanda Stapleton (City of Casey counsellor and ex-mayor) was participating in today’s information session and had some valid questions to ask about her own situation. A man named Bruce from Latrobe Community Health Service was also in attendance and did seem to take all of our feedback today seriously. Whilst I’ve had many frustrations and stumbling blocks in the process so far, I’m trying my hardest to be optimistic about the future as an NDIS participant and actually use my funding for positive change.

On Thursday night, I attended my first group sleep study workshop held at La Trobe University - Psychology Clinic in Bundoora. It’s been a couple of weeks since I started my involvement in the sleep research study for Autistic Adults that I’m participating in and now I’ll be starting to learn ways to hopefully improve my sleep. Driving to Bundoora was honestly a headache mainly because I was in the middle of peak hour traffic and also because I accidentally took the wrong exit off the Eastern Freeway but it’s all learning.

It was just a small group of us: three other participants as well as Dr. Lauren Lawson (Research Fellow), Dr. Eric Morris (La Trobe University Psychology Clinic Director) and Alexis (Provisional Psychologist). Firstly, they briefly explained some concepts about sleep including sleep cycles, the stages of sleep, circadian rhythms and arousal. Next we talked about what is insomnia and the ways many people try to fall asleep.

These “amplifiers” include things like taking sleep vitamins, using lavender spray, playing music, reading, listening to a guided meditation. Whilst they make work occasionally, they’re generally not considered long term solutions. We also talked about the costs of insomnia such as having poor concentration and focus, low energy levels, lack of motivation and drive, feeling more irritable and emotional, impacting on your health and wellbeing, preventing you from doing some daily activities and being a burden on your finances.

This lead into Acceptance and Commitment Therapy or simply Acceptance of things like having worrying thoughts and frustrations about trying to fall asleep, letting go of the struggle and essentially letting go of control. We then discussed the barriers to changing your sleep including fear of change, discomfort, uncertainty, being stuck in current habits, having temptations or resistance.

Lastly, we wrote down a few goals that we wish to achieve relating to sleep including to fall asleep faster and stay asleep longer, have a more regular sleep routine, have less disruptions during the night, have more energy during the day, be able to concentrate and focus better, to be more productive and be able to participate more in daily activities, to lower levels of anxiety and depression.

The good thing about this group is that it’s small, casual and allows anyone to contribute their ideas, thoughts and personal experiences related to sleep and insomnia. Whilst I am quite uncertain about this new approach so far, I’m also open to trying it out. At this point, I’ll literally try anything to help me sleep better. It’s affecting my day to day living, brain function, mood and concentration levels. I’m looking forward to the next workshop.

“What you wanted so had to let it go. Brand new day is coming round the bend. Troubles reaching for the end. If you stray from the path my friend, I will pick you up again.” Alex Lloyd - Brand New Day (2006)

“There's always something taking over my mind. I know I'm crazy and I know you know. I trying harder 'cause I love you so. I want to be special. I want to be good. I want to be happy. I know that I should. Sometimes the truth. Is hard to believe. Some of us stay. And some of us leave.” Alex Lloyd - Special (2008)