The application process….

As I have written before, I’ve been on “sick leave” for over two years now and the next step was to apply for WIA benefits. So that’s what I did on august 27th of 2020, with the help of my therapist since I have trouble understanding some stuff.

It started with the fact that they needed some extra information and they asked my employer for it. Which was a little off since they needed information that only I could give in the detail they needed it in. Uwv took their time responding to our question of what kind of extra information they needed so on oktober 20th 2020 they received the extra information.

On oktober 26th 2020 I received a letter to invite me for a conversation with the Dr. to see if I would qualify for the WIA benefits. Well, this didn’t go according to plan. The weekend before the appointment I got sick. To the point that I had to get a Covid test. I’ll tell more about that in another blog,

So the appointment got rescheduled for november the 24th. It already started when entering the building, I don’t mind wearing a mask but most disinfectant gels make me want to puke. The lady behind the front desk noticed that and told me that the disinfectand was not mandatory… yet the securityguard guided us directly to it.

While my psychologist and I were waiting to be called in, the security on guard on that floor walked over to us and said we shouldn’t be there because we were coughing. Both of us got tested for Covid and were both negative. The appointment started a half our late and the Dr. didn’t do their homework at all. It felt rushed and I noticed that I didn’t get seen at all. This is something that I struggle to notice, but picked up on it straight away. While leaving she told us that she needed about two weeks to finish the report, thereby also suggesting that I would actually receive the report.

Two weeks go by and I didn’t reveive a thing. This brings us to january 7th 2021. I called the Uwv to tell them it wat taking very long. I still didn’t have the report while the Dr. said it would take about two weeks. It turns out that the report was written on december the 21st 2020 and that I would get the report when the decision was made. The lady on the phone would contact the Dr. and tell here that I would like the report sooner then that. If she agreed, I would receive the papers within the next two weeks.

On januari the 14th I got a call. A decision has been made… With no report in sight it was a hard one to prepare for. My psychologist let me do this by my self as long as I would keep in mind that there’s always a possibility to object to the decision.

The day after the decision was told to me by phone and the result’s not what I thought it would be. The WIA benefits were denied. The guy on the phone was an absolute proffesional and made sure I understood everything. He also understood where I was comming from and that’s a huge plus for me.

The day after the decision was told to me, the report was in my mailbox. It turns out that our (psychologist and myself) feeling was right. The report is filled with loads of mistakes and untruths.

So the next step in this process will be to object. We’ve got until the first of march to submit our papers.

Wish me luck!

Skyler

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The holiday’s….

The original plan for this year was to celebrate Christmas at my place for the first time ever. However with covid-19 still in our midst, those plans changed. With the lockdown and the limited amount of visitors allowed, I decided to celebrate at my mums and her boyfriend.

My nerves got the better of me since it’s also the first get together with me being out as Skyler. Don’t get me wrong, I love my family but they’e not the most supportive and understanding kind of people.

I arrived the 244th and with that a lot of deadnaming happend, making Christmas day also not a whole lot of fun. I understand that it is something that takes time getting used to and that old habbits are hard to break. On boxingday the deadnaming continued and irritation poked it’s ugly head around the corner when I did correct them. Luckily cooking the boxingday dinner with my sister provided loads of distraction…

It turns out my sister is extremely stressfull and I picked up on that resulting in loads of body aches and a hard time calming myself down. I still have an extremely full head and the rest of my body hurts too.

The lesson I’m taking from this is that things take time and that there are people in my life who do make the effort and even provide me with ideas to fix the deaadnaming… Next year, I’ll make sure to plan a whole lot better :).

Until next time!

Skyler

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Non-binary…

The non-binary pride flag was created in 2014 by Kye Rowan. Yellow represents people whose gender exists outside the binary, purple represents those whose gender is a mixture of – or between – male and female, black represents people who have no gender, and white represents those who embrace many or all genders. (source https://en.wikipedia.org/wiki/Non-binary_gender#:~:text=The%20non%2Dbinary%20pride%20flag,embrace%20many%20or%20all%20genders. )

In my last post I described that I ran with my “newly” found words. On October 19th I took the first medical hurdle. I made an appointment with my GP. At this point I was a little nerveous because at this point, no one dismissed my feelings or had a negative reaction to my story. Everyone was very supportive of me.

Well, my GP looks like a modern doctor but aparently looks can be deceiving. He is quite oldfashioned and thinks that the body you are born in is the correct one. Yeah, I wasn’t to happy when I found that out. With my autism diagnosis he is a good match but with my gender dysphoria not so much.

In the end I got the referrals that I needed and went looking for information close to home. The practice my GP tought of was not a good match and I filled in an application for a practice that is a part of “Genderteam Zuid-Nederland”.

On November 19th I got an email that as of Oktober 19th I am on their waiting list. It will be at least a year before it is my turn. I’m happy that I’m finaly on my way to living my best life as my true self.

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I am sorry…

Let my start by apologizing to you guys for not posting anything since September 25th. These last few months have been crazy busy and a lot has happend since my last post so let me help you get up to speed.

As I wrote in July 19th’s post, I’ve been on sickleave for a long time, since November 2018 to be exact. For the last year and a half we’ve been working on improving my skills so I can hopefully find a job that is a good match with me. At this moment we’ve not found a new one yet, which means that I have submitted my wia application. This means that I will go through an inspection to see if I am still suitable to work at all. As of now, no decision has been made yet due to Covid-19 restrictions and them working extremely slow…

What did happen tho is that I have decided to build an online platform for those on the autism spectrum, their parents and anyone else who wants more information. Hopefully in the future I can use it to build my network and help people from my own expiernce. Since I’m still building, I will let you know when it goes live.

I have finished my course on “herstellen doe je zelf” by Fameus and I will start on January 13th with “werken met eigen ervaring” by RIBW.

This past Oktobe I’ve finaly found the correct words that I have been looking for all my life. I’ve never been a girly girl and while talking with my best friends I’ve finaly made the discovery (found the right words to use) that I am in fact non-binary and I ran with it.

My name is Skyler, I’m non-binary and use they/them and he/him pronouns.

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communication in a different way…

This is where I want to be…

September 22nd came around, that morning I woke up incredible nerveous. It bothered me more that the previous days. More so because I had a training in the morning and I didn’t know them very well yet.

Before the training began, I explained that I needed a little more clearity and guidance then the previous week. All went well until we got an assigment that I could not wrap my head around. The co-trainer asked if I needed help so she walked over, even then I had a full on meltdown and the trainer took me outside.

The co-trainer and I made an attempt to start, I started with the hardest one (wish I knew beforehand) and we finished half of it, because right then I knew I did not need to push myself any further. Got a good luck this afternoon at the end of the training and went on my way. Even got a hug from one of the students, even tho I really don’t like them.. it is just what I needed.

That afternoon I arrived a little early for the “session” with my coach and therapist. We had some fun and I showed my therapist the drawing I made of him, the first cartoon I drew with hands. I took some notes for another drawing and then it was time for our session…

Apparently I did well, however while I was explaining the drawing I made, I had another meltdown that ended with me sitting on the floor and my therapist sitting right next to me.

How I felt these last few weeks..

I ended with saying that I needed to switch because I really want to keep growing and learning but I do need a stable base for that and someone that will kick my butt every now and then. I also told that I really do not want my toughts to get any darker because I can and will not end up at rock bottom, take things to far.

I am staying with the same practice, just a different therapist. One who has more experience and who knows me a little better because he has treated me before I had my diagnosis. My coach is not a bad guy, right now he’s just unable to keep up with my needs and my eagerness.

Next week my new therapist and I will have a planning session because I need the next few months as predictable as possible and create a stable base.

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Perspective and intuition

I need a minute to explain the backstory, so bare with me please…

This year I’ve had the same coach as last year to help me cope with my autism diagnosis and to give me the tools to live my best possible life. It is also my second year on sick leave and trying to figure out what is next. It’s been a rocky road filled with missed deadlines, miscommunication, agreements that were not kept and a lot of struggeling on my part that my coach missed.

With a promise on his part that I would have enough homework to last me 3 weeks, my coach went on holiday on September 1st. When I had a session that thursday with the substitute for the work related sessions I already finished the first two weeks of homework. As it turns out that session was really important for what I am about to tell you…

During that session a few things happend that put things in motion. When my therapist showed me the letter that my coach was supposed to send to my employer, he noticed something with me and he started to ask questions wich made me spill my beans. Even now I can’t quite remember what he asked, I just know it was the right thing to do. It helped me put in to words what my body (intuition) subconscious already knew. I need a change of therapist.

On September 17th we tried to prepare me for the talk with my coach and the subsitute therapist on September 22nd. At first we tried to write a story that I could use as a guide. It turns out I really do struggle with verbal communication. My therapist however found a really awsome way, he told me to draw and I would use that to explain what is going on.

So that is what I did.

A little lesson that I learned from this. Your body is always telling you a story, you just have to listen.

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Learning how to set boundaries…

My whole life I have struggled with setting boundaries and as a result of that at age 34 I crashed hard. All because I’ve kept going and going and not being able to recharge my battery properly. As it turned out, I’ve never learned to recognise the signals and to top it of I’m also autistic which makes it a little harder.

Here’s where my therapy comes in to place. The first year we dove into what autism exactly is and how it presents itself with me and we’ve discoverd that I am extremely eager to move forward, to the point that I will lose sight of my own boundaries.

These last few months however I have made a huge progress…

Here in The Netherlands you can be sick up to two years with an employer and in that time you go trough a whole process. This is what I’ve been going trough for the last year and a half. As it turns out my job and I are not a good match and because of that I am trying to figure out what does work for me.

With that process we are a little ahead of schedule and I’ve been given permission to find an internship for a few months. A perfect way for that was a summer job..

However I got a ‘surprise’ phonecall, as it turns out you have to file a load of paperwork before your 93 week mark to submit a WIA application. With this and a lot of other dr. visits and the possibility of an internship I choose to set my boundaries and aparently I did it in a very good way.

It shocked my therapist that I made the choise to take my foot of the accelerator and take it easy for a little while. Even tho I really want to keep moving forward, I’ve come to the conclusion that in this case it is a smarter choise to move with caution because I do not want to stress myself out.

This made me relise that I have learned to recognise my boundaries and I am less afraid to set them out for others to see. It has been a slow process but I am getting there in my own time and way and I am proud of it.

Be kind to one and other and make someone smile today!

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The healing power of music

For a lot of you listening to music is a good way to pass time. In my case however, it is not only a way to pass time, it is also a way for me to organise my head.

I use music as a way to process the sensory imput I’ve had during the day and to make sure I don’t go to bed with a head still filled with impressions, because if I do that I will lose sleep and the following day will be a whole lot harder to handle.

There are also a few musicians that can help me calm myself down. I use those with a sensory overload and even a meltdown. I’ve known The Pierce Brothers for a while now and their music can help me for a fact.

You can check their music here –> https://www.youtube.com/user/piercebrothersmusic

Recently I have discoverd The shirtless violinist and his music also has a calming effect on me so I am definitly going to try it if his music will also get me out of a sensory overload or a meltdown.

You can check his music here –> https://www.youtube.com/channel/UCus8m2tLgpp1-yw6Rcpgoew

Take good care of yourself!

See you next time

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That’s a first…

Today something happend that has never happend before…

A little backstory is in order tho. For me working with a daily scheduele and a weekplanner with all my appointments in them works best. It is also something I take pride in. I can make my own appointments and make sure I do turn up in time.

Most of the time I use a digital planner on my phone and an old fashioned paper one. However for today’s appointment with my gp to discuss my medication I did not put the appointmet in my paper planner, I just used the app on my phone and as always set a reminder.

However that specific alarm did not go off this morning and as a result of that I missed the schedueled appointment time. Imagine my shock when my phone rang and my gp was on the other end.

Luckily he was very understanding and sugested we would do the consult by phone. It all turned out for the best and I have learned my lesson big time. Even tho it did turn out for the better I still feel quite embarrassed by all of it.

All my following appointments will be noted in both the app and the paper planner so I never have to experience it again.

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A small experiment

On the 13th of May I descided to post the following on my twitter acount “Hope this will not bite me in the a**.. If you could ask me anything about my autism without judgement from my side, what would you ask me? #autismawareness #autismacceptance “. Because I wanted to see what people would ask me if they got the chance and of course to raise awareness.

I was hoping to get loads of questions but I think a lot of people are afraid of being judged. So far I’ve had one friend asking me a couple of questions combined and today I tried my best to answer them for her.

This is what she asked me:

What was it that led to you reaching out to a professional, which in turn brought about the diagnosis of #Autism. What were the ‘signs’? What made you ‘think’ you were ‘different’? #nojudgement 🙂

Since twitter does have its limitations, I wanted to adress them in my blog as well. I reached out to a professional because with my fysio things were not adding up and they suggested a multi-disciplinary approach. After 11 sessions and not talking about a possible #autism diagnosis I got a new referral letter and had talked about it with my store manager, she pointed out some things, not handeling change very well being one of them. Sorry but I can’t remember the rest of the things she said… I talked to my psychologist and we went from there. As it turns out he had his suspicions from the beginning but since I kept sending mixed signals he wasn’t to sure. He didn’t point them out to me because he didn’t want to throw me off, however once I asked whether or not I would have autism he honestly told me what he suspected from the beginning.

Looking back now I now know that my small social circle and having trouble picking up non-verbal signs, not being able to handle change, loud sounds, strong smells and a whole lot of other things were always a sign of my #autism.

I’ve always had a feeling that I never fit properly in the what I now know is the Neuro Typical world. I know now that it’s because my brain is wired differently and my way of processing information is different than those without autism.

That does not take away that I am in fact a perfectly normal autistic person!

If you do have any more questions, feel free to ask them. I promise I will not bite :).

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