I had the appointment yesterday with the NDIS provider. It went well. I left home on time, but had trouble finding parking, so I arrived late.
The lady who interviewed me was nice and friendly and she seemed genuinely interested and listened to what I said.
She said she doesn’t know how long the paperwork will take to be approved, but will submit it straight away.
So I’m back to waiting, but I’m closer this time so hopefully I’ll hear from her soon.
(c) ASD and me 2019.
My appointment is tomorrow. I’m so glad it’s finally here, but I’m also nervous. I don’t like strangers asking me personal questions and being intrusive in my life, but I know they need to to know what help I need.
And I really do need it.
It’s at 11am, so its enough time to wake up, have breakfast, then arrive on time. They said the appointment will take about 2 hours.
Hopefully everything will go well and I won’t ended up crying again.
Wish me luck.
(c) ASD and me 2019
The NDIS called me yesterday and said I was accepted.
I have an appointment on the 2nd of July.
They also send me paperwork to fill in and take with me to the appointment.
My head is filled with thoughts, but they are like a hurricane, so it hard to sort through them to write down and record. It sounds like a lot of bees buzzing in a hive.
I just hope they can actually help me recover. I really hate being depressed, anxious, helpless. It has robbed me of most of my life, so hopefully now I can reclaim it and he healthier and happier.
Even if not happier, just not sad would be good.
(c) ASD and me 2019.
ASMR means Autonomous Sensory Meridian Response. It if you listen to it, its meant to give you tingles on your skin and spine. Some people love it, some don’t get the tingling. I have felt tingle a few times and its a very strange sensation, like a feather gentle touching your skin.
This past year, I’ve been trying to record ASMR videos. It has been extremely difficult for me for many reasons.
1. I’m not very “techie”, so it takes me ages to learn new software. I get frustrated easily and have lost my patience, so I usually quit.
2. I now have sometimes very loud tinnitus, so its hard to tell the difference between my tinnitus and white noise on the recording. Turning the volume up just makes it worse.
3. I really have no ideas what I’m doing. I have done loads of research, and found the best equipment is very expensive.
4. My Samsung phone is great to use as a phone, but not as a recording device. Everything sounds tinny and a bit distorted and has lots of white noise and I have no idea how to remove it.
5. Its extremely difficult to find a place that has NO background noise. I even went to a national park, and it has car engine noise from people driving past.
I want to do this to have some purpose to my life, than just shopping and endless house work and waiting for the NDIS to hurry up.
It doesn’t matter what I do, I seem to always struggle. Other people seem to cruise along, yet I’m almost drowning and need a floating life preserver.
(c) ASD and me 2019.
I’m still waiting to hear from the NDIS. I’ve been calling occasionally and every time its the same answer: your application is still processing.
I know there are probably people who are more disabled than me and need help more, but I still really need help.
I don’t want to call too much because i might cry and I hate crying, especially on the phone, also because might get anxious which people usually misinterpret as anger. I know the people who answer the phone are only doing their job and have nothing to do with the processing of forms, so I don’t want to be rude to them. I’ve volunteered in a neighbourhood centre where I answered the phone and sometimes callers were rude and that was hard to ignore.
I only lasted a year.
I guess all I can do is wait and hope they get to me soon and dont lose my paperwork.
(c) ASD and me 2019
I watched The shape of water and I loved it. I identify a lot with the main character, Elsia.
Its not a cheesy B grade monster move, like Creature from the Black Lagoon, its a beautiful love story about being brave, doing what’s right, following your heart, finding happiness, love and your true self.
I think the antagonist is meant to be an alpha male, but I just think he’s an aggressive, abusive jerk. You can’t build yourself up by holding other people down. You may think you’re superior, but really, you’re just dragging yourself down with them.
I think this movie is about accepting peoples differences, and accepting yourself, as a human with flaws. The main character is mute and has felt lacking or defective in some way her whole life. I empathise, since I’ve always felt different and lacking something, I’m clearly different from other people, I don’t understand them and they don’t understand me.
This movie has hidden meanings, it reminds me of the book Who moved my cheese? which on the surface, seems like its about mice looking for cheese in a maze, but its really a metaphor for accepting change in your life.
I’ve seen mixed reviews, but I suggest you watch the movie and make up your own mind.
(c) ASD and me 2019
I saw the ear specialist last Friday. I didn’t like the news. He said I don’t have a brain tumour or an enlarged blood vessel, he was hoping for. Since its not, he doesn’t know why I have tinnitus in only 1 ear.
He thinks it may be my heart beat echoing in my ear. Oh and I have “cerebellar tonsils that are slightly just over 5mm below the foramen magnum which raises the possibility of a Chiari 1 malformation”. What ever it is, its fucking loud sometimes and extremely annoying. But on the bright side, I may be able to get a free hearing aid.
I was tired after waiting for over an hour and didn’t register what he had said. Then he felt my pulse and he wanted me to listen to my ear and see if it synced up with my heart beat. I was distracted because the specialist is very handsome, so I couldn’t concentrate.
He said I don’t need to see him any more but if it gets worse or I become paralysed on my face, go to the emergency with my MRI results immediately. Then shook my hand. his skin was smooth and cool.
Then we left. My partner wanted to get home to avoid traffic, so I have to go back to the city on the train to get my MRI scan results from the radiologist.
I don’t want anything else wrong with me. Its like a bad game show:
A game show I didn’t choose to be on, that I find very boring, tedious, painful, annoying and that I can’t leave.
As for the title, did you know brain had tonsils, do an internet search for “Chiari 1 malformation”, if you want to ruin your day.
(c) ASD and me 2019.
Yesterday my partner said he need some things from the supermarket and asked if I could go. The sky didn’t look grey enough to rain so I went.
I was in Woolies a few minutes when the over head speakers started blasting the supermarket theme song over and over. It was so loud it was distorted. I began to panic a bit. My tinnitus started and I couldn’t think. I forgot where items were I wanted and I thought of leaving.
It was noisier in some isles, so I moved to find a quieter area. I stood near the freezers and used a pen I found on a shelf to cross off the things on my list I already had in my trolley. Then after a few minutes, the volume was turned down and was replaced by the radio.
I was grateful, but now tired and over it. I rushed through, forgot things on my list, accidentally grabbed rocket instead of spinach then went through the checkout. I drove home and was tired for the rest of the day.
This hasn’t happened before and I really hope it was a one time mistake. This is the only supermarket I like and has the food I can eat. We normally buy our groceries online and have them delivered, but there’s a fee and it takes till the next day and we needed food then so we wouldn’t waste money on take away.
So I really need to ask the question, why do shops play music or radio? Who is this for? Obviously its not for me or other ASD sufferers, so who is it for?
Is it for the staff? Is it to encourage people into the store? To trick customers into spending more money? All it does is make me angry, tired, waste my time and make me hate the shop and want to leave.
I’ve had problems in the past with delivery drivers carrying too much at once and breaking things. My partner called Woolies and they apologised, but this makes me not want to trust them. I need food to live, so I can’t just not buy food. So why do shops make it so EXTREMELY difficult to buy from them?
Also, isn’t this a work health and safety risk? Tradesmen who work with power tools have to follow WHS rules and wear protective head gear to protect them from loud noises and hearing damage, so why don’t these shops need to follow the same rules? Their extremely loud music can be as loud, or even louder than a jack hammer trying to cut through concrete.
The noise also affects shops around it. There’s a Kikki K shop I love, but its 2 doors down from an awful constructions site/nightclub/trendy shoe “experience” that I can actually still hear in the Kikki K shop. I thought many times about making a complaint, but I’m tired, mentally exhausted, so the thought of talking to a person who will ask many questions an may make me fill out a form before they get up off their bum to do something, just makes me more anxious and tired. I could buy online, but why should I? Why can’t I go to a shop without being deafened?
I read comments online and I know I’m not the only one. Hopefully shops will wake up and realise they are scaring away money (I mean customers).
(c) ASD and me 2019
I tried to research food that is healthy for ASD or Autism, but I couldn’t find proper results, only blogs speculating on their own ideas.
I can only talk about the food I eat. I try different things, but I have IBS symptoms and some things I can’t eat:
Excessively sweet: This includes almost every food, even things that shouldn’t have sugar as an ingredient, like pasta sauce or cheese. I also can’t eat some sugar substitutes and artificial sweeteners.
Garlic: a tiny amount cooked properly may be okay, but I bought frozen fish in a pouch and it was smothered in rich sauce that was overloaded with garlic. About half an hour later, my throat was on fire. I haven’t had indigestion like that since I had GERD. (Gastroesophageal Reflux Disease. This has the easiest test in the world).
Pepper: I hate pepper. I can’t stand the smell either. I climbs up my nostrils and does a lot of damage.
Horseradish and Wasabi: These are actually two different plants that are related, but taste different. I hate horseradish. I read Wasabi is milder in taste so I would be willing to try some real Wasabi plant. But lets be honest, I’ll probably hate that as well.
Chili: I CAN NOT eat this or even stand the smell. I hate spices and spicy food, but this is another level of hell. I hate when people say “that’s not hot” or “its not spicy” , then I’m guilted or peer pressured into eating some, then I’m sick for hours afterwards. Why can’t people understand I can’t fucking eat it?! I don’t force my tastes on to other people, why do it to me?
(c) ASD and me 2019.
I had an MRI on Monday. It wasn’t as bad as I had catastrophised in my head for months.
We arrived early, sat in the waiting room for a while, which is when I started to get anxious.
Then I was called in.
The Dr introduced himself as Tom. He asked me questions, and took me to a small cubicle to change. Yes, into a crepe paper gown that was black but some how felt transparent.
Then I entered the large room with the giant electronic doughnut, also know as the Magnetic Resonance Imaging machine. He gave me bright yellow ear plugs that were the size of pool noodles and stuck out from my ears a bit. I’ve never liked earplugs, but these, I like.
I laid down on the metal bed part and he gave me the buzzer button, then asked me what music I wanted, I said Classical. It was around this time I cried. The Dr was nice an reassured me it was okay.
I laid down, he put the headphones on me, put a cage thing over my head and put foam bits around my head and neck to stop me from moving.
The MRI is very loud. The earplugs and music don’t block out all the noises, just lower it to a less than deafening volume. It makes jackhammer noises, alarm noises, photographic camera aperture opening and closing noises, which I assume are the photographs of my brain.
The ceiling isn’t as low and I had thought. Its at least 30 cms above my face, possibly more. I was afraid to look up and move my neck.
You’re whole body isn’t in the tube, I’m short so I went in past my waist, but my legs were out. It would be less for a tall person.
Truth is, the MRI is loud. And closed in and not comfortable. Its not painful and things don’t touch you. Even though photographs are being taken, there is no flash or lights. The worst part is the magnetic field created heat and that made my face very hot.
I didn’t want to do the MRI, I did try to avoid it, but, I was worried more about what would happen if I didn’t have it.
Edit: I think a better name would be a “Claustrophobic Disco”.
(c)ASD and me 2019.
ASD and me 
You must be logged in to post a comment.