My Spectacular breakdown: The Acceptance

After I had stopped taking the antidepressants and felt so great. I started getting back into Facebook and connecting with people. It was like my mind finally felt ready to socialise somewhat. I finally felt ready to get involved on Facebook again. I started chatting to a few close friends online. One in particular. This friend has been incredibly helpful in my journey of acceptance, processing and moving forward to becoming the person I am meant to be. She listened to my many rants, vents and emotional brain dumps as I processed so many BIG things in my head. You are awesome, my dear friend! Thank you!

As I started to get back into Facebook I read many helpful articles on Autism which really helped me to understand myself better and I started to shed off the layers of coping mechanisms I had. I also started thinking differently about myself, being more accepting of my Autism and how my brain works. Instead of beating myself up and practising self-hate. I began to accept myself in the moment for who I was and what was going on. I did not try to fight it and get upset because I was not coping how I thought I should cope. Somehow this positive mind shift came about.

I strongly believe it is from the almost 12 weeks of me saying a positive script 50 times daily. My Mum is a counselor and last year she suggested I try this new therapy she had been trained in. The basic idea works on the notion that your subconscious is like a child and believes anything and everything you tell it (yourself) so if you say more positive things to yourself and about yourself eventually your brain will form new neural pathways for more positive thinking. It is called brain re-wiring therapy. It is based on the something written in the book 'The brain that changes itself.' I had a few sessions with my Mum and we came up with a script. I started saying this script 50 times a day and went for almost 12 weeks of saying it 50 times daily. I was only meant to go for 6 weeks but I went for longer. Using my Autistic determination to keep saying it. I gave up after I went into Autistic burnout as it was too stressful for me. I still remember it now and say at times when I start to feel myself get stressed. I find myself calming down faster upon saying it. My Mum told me that the effects of saying this script 50 times a day for 6 weeks still worked more than 6 months later. Powerful stuff!

I had been seeing my Psychologist fairly regularly in this time. It was about 8 -10 or so weeks since my breakdown. My psychologist was helping me to manage my emotions better, and to recognise when I was getting close to shutdown or meltdown. She talked to me about emotion surfing and that I did not need to react to things when they happened. She sent me a link about it. I started trying to practise it when I felt my emotions become intense and overwhelming. It really helped me to just start letting things go. I started saying to myself 'I love and accept myself unconditionally in this moment.' When things around me were chaotic, stressful, upsetting, when I felt overwhelmed. I said that statement. It really helped me to just accept things as they were instead of fighting them. I also started saying my brain re-wire script again.

After a week or so of practicing this my husband got a $500 fine from the Police. I was not in the best place when I received the news. It was around 9:30am and I was trying to change Possum's nappy. Possum was home from daycare because he was sick once again. Atrus texted me and I just lost it. I went into a crying hysterical meltdown. I vented about it on the AS Mothers' group. I was so mad and frustrated. I did not know how we would pay for it. Everything felt so hopeless. I did a lot of catastrophic thinking. I spent the day in shutdown, rocking in the rocking chair. My Mum came and took Possum to look after him as I was not in a state to manage.

However, I did not try to fight how I was feeling. I did not beat myself up and get mad at myself for being this way. I did not give myself a talking to about how much of a child I was acting like. I just let. it. happen. I accepted it as a process that I had to go through. I knew it would pass. I knew in time things would get better. It took me about 8 days to recover from the horrific meltdown during which time I had mild depressive episode but it passed. I did not allow myself to get into a vicious downward spiral of self-hate or negative thinking. I kept thinking to myself 'this will pass. In time I will feel better.' I did not judge myself for how I behaved or what I was thinking. I just accepted that this was where I was right now and that I was ok, that it was ok. I practised mindfulness and also repeated the phrase 'I love and accept myself unconditionally in this moment.'

It was after my horrific meltdown that I changed my name to having Âû at the end. I shared a little about my story on the Au Facebook page. They welcomed me and cheered me on in my acceptance journey. I felt relief, I felt free. That I was finally coming home and accepting who I was and able to start the journey of discovering myself. I felt a part of a community. I no longer felt I had to fight who I was, to beat myself up for my neurology. It was a defining moment for me. I finally felt at peace. I realised I was ready for the Âû name change. So I changed it. Since then it is a constant reminder for me of the Âû family I belong to and advocacy I feel intensely called to do.

Since I started accepting myself, practicing mindfulness when I have meltdowns or shutdowns, I find I recover faster from them. I don't sink into a big depressed heap and take weeks to recover. I accept where I am at, don't let my negative thoughts take hold, notice them and let them move on. I am much kinder to myself and accept that this is where I am at (mostly). I do struggle with days where I just seem to do nothing but recover from a shutdown. Those days are the hardest to accept but I am slowly getting there.

When I first had my breakdown February my DASS test was 10/10/19 (depression/anxiety/stress). I did another DASS test a few days ago and it was 4/11/19. I am not depressed. I am severely anxious and stressed though. I see this as a result of trying to live a life that was not suited to me. I pushed myself way way too hard to manage everything that was expected of me and I spectacularly fell apart.

I am in the process of appealing my disability pension because I can clearly explain myself now. I understand myself now and what is going on. Prior to my breakdown, I was clueless, I didn't know how to verbalise what I needed to for my application. I know that I will meet the criteria this time. My Psychologist, Doctor and Early Intervention Specialist are all writing letters of appeal explaining my situation and how I meet the criteria. They also explained that I did not actually understand what was going on for me at the time that I applied so that was why it was not clear to them how bad I was. I am also going to ask Atrus and my Mum to write a letter explaining things from their perspective. I will also write a letter. Once we have got all that together I will send it off and wait in anticipation.

I am trying to learn my limits, signs of doing too much and my triggers for shutdown/meltdown before they happen and then do self-care. My self-care currently is exercising daily, listening to a relaxation exercise and mindfulness. I am in the process of putting together a sensory/emotional regulation kit for myself which I will take everywhere I go. It will include cue cards with instructions of what to do to calm down or what to do to deal with anger. It will also include a protein snack so that if I am caught somewhere waiting and get hungry I won't go into a sugar low and then shutdown. Once I have put it together I will share a photo of it and what is in it to inspire others.

The Early Intervention Specialist has really been helping me with mindfulness, relaxation and trauma. He is trained in all three and will help me learn more about each one. He is also going to help me heal from my childhood trauma which is really good. I need to heal from my past traumas. I am so grateful that I found out about him. He is really open to learning about Aspergers too. He went to a Tony Attwood seminar a last week. He told me he is seeing Aspies everywhere now. I had to laugh.

I am finally in a place where I accept myself as I am. I feel so much peace and joy in who I am. I am broken, fragile yet I am strong. I am healing, I am improving. It will take time. I do not know how long. Tiny steps forward and acceptance of the process is the key. My poem Resplendent explains the the process I have been through and am going through.

I pushed myself for so long and tried to maintain a level of function that was well beyond my level of coping because it was expected of me to cope by my family, Atrus, and society.  I have regressed. I am more severely Autistic now. My coping levels are low, very low. I get overwhelmed, overstimulated, stressed, and frustrated easily. It is a sign of pushing myself for too long and not having any idea that I needed to pace myself and be kinder to myself.

Things that I used to find easy to manage are now quite challenging for me. I find myself going into shutdown easily, in the middle of trying to do something and then I can't think clearly and forget what I need to do next. So I start flapping in frustration and speak repetitively in a weird shaky voice because the words just stop being able to come out of my mouth. I have no control over this.

I have been remembering childhood stims. Flapping is one I remember doing. I flap when I am happy and flip my hands when I am stressed, anxious and overstimulated.

If I am not too overloaded and close to shutdown and there's not too much noise I can articulate quite well to Atrus what is going on for me. I was not always able to do this as mentioned earlier. I know now what is going on for me. I understand myself so much better.

My brain feels frazzled. Like it is unraveling constantly. I often spend so much time and energy trying to remember the process of what to do for an activity that I get overstimulated and tired. It is very frustrating. I forget the process of how to do things. I often stand lost in the middle of a room wondering what I was meant to be doing. I find myself going in circles around a room until I remember what I'm doing and what to do. This means that everything takes me a long time to do. I really need extra help to do things, to work out the steps involved of how to do things. My delayed processing is very slow which means it takes me awhile to work out the steps involved and what to do next. This happens to me when there is too much going on and being demanded of me. I very quickly go into this state. My shutdown threshold is rather low.

I find myself constantly losing track of time and everything taking a long time because I am so overloaded that I find myself needing to almost constantly stim or withdraw (shutdown) or desperately needing to write. This makes doing anything incredibly challenging to do and small easy tasks are hard and take me a long time to complete. It is very frustrating because I feel I can never get on top of things. There is so much to do and I can't manage it all any longer. So I don't. I accept that this is where I am at right now and don't let myself worry about what I should be doing.

When Atrus and Possum are home there is a lot of noise, busyness and things to do. I often go non-verbal and into shutdown in these times. I feel very confused and overstimulated too. I feel lost because I don't know what to do next or how to, because of all the busyness and noise. I feel I need to keep going and continue what I was trying to do but I often can't. I usually leave the room if possible to stim, and calm down.

I can manage quite easily writing, advocacy and networking, but other busy, sensory overloading things are more difficult for me. It is all online and written communication so it is easy for me to do. I don't know how to manage being a Mother and wife in this state. It takes a lot out of me. The times Atrus and Possum are home I tire easily and often need to withdraw. Earlier on I have been made to feel guilty by others for being this way. That I am being selfish. I am not! I don't have much more to give. My spoons get drained so easily by the small amount of responsibility I do have. I have let go of the guilt now. I have to, in order to heal.

Ideally Atrus would be at home and be my full time carer because right now that is what I really need. We are trying to work towards that. Atrus would like to work from home part time. He is a Graphic Designer so it is doable for him to work from home. We are quite interested in unjobbing. That is our goal. To completely change the way we live and really slow down our lifestyle. I am hoping I can get disability pension as that will really help us transition get out of this massive stress filled vicious cycle hole we are in. Atrus isn't in a very good state either. He has mirror depression, anxiety and is very stressed. We desperately need to change our lifestyle sooner, rather than later.

In time everything will improve. I know it will.

Introducing the main characters

In my writing I share my stories. I have in the past referred to my husband as DH. Well he decided he wanted to be called Atrus from the Myst games. My son is referred to as Possum. So if you wonder who I am writing about, now you know. Atrus and Possum are my family!

Family Meeting with my Psychologist

The meeting with my family, Psychologist and myself was today. It went very well. Much better than I thought it would go. My Psychologist handled the meeting very well, I thought. We recorded the session so that I can listen to it later. I think it will be very helpful for me to do this. So much was said that it was all a bit of a blur. Everyone got to have their say and voice their opinions. My psychologist explained very well about Autism and how it affects my life to my family. In particular about meltdowns, Sensory processing disorder, delayed processing disorder. My family get it now. Yay! I don't feel so alone and misunderstood in this journey of understanding myself better. It sure helps to feel understood. 

My Psychologist wrote up a plan for me to do and for my family to do, so that we can work together better.

Here is my plan that she wrote for me:

1. Brainstorm different scenarios for different variations of things that could happen and write a social story/visual plan of how I will cope with various unexpected changes.
2. Create a visual timetable - using a whiteboard or velcro board
3. Calm inside (body)
   Calm inside (home) - environment
4. Appeal Disability pension.
5. Back-up meals in the freezer and activity schedule for my son.
6. Buy or make a board for the visual time table.
7. Possibly anxiety medication?
8. Create a Code for my emotions to communicate with my family, e.g. Angry - red and then tell them on a scale from 1-10 where I am. If I am really angry, I will say I am a red 10 and they will know to leave me alone to calm down. The other emotions are: Happy, Sad, Stressed/anxious, and meltdown. I need to choose colours for the rest.
9. Develop a crisis plan that works for helping me to calm down from meltdowns.
10. Buy a CAT kit

I added the last one as I think it will be very helpful to me. My Psych showed me her CAT kit at the end of the session. I could clearly see how much of a HUGE help it will be for me and how much I need something like this. She said she has used the CAT kit for children and adults on the Spectrum that she has worked with. It is not cheap though.

I am very drained. It has been a big day. I don't have the spoons to write much more. I still need to process a lot of what has been said and figure out how to actually do this, to make it happen. Inertia often gets in the way of things happening. Life is incredibly overwhelming for me right now. I am very much a hermit and do not feel up to doing much at the moment. I need to rest and regain spoons to cope with life better.

On the positive side I have found a visual timer for myself to stop myself from hyperfocusing and getting so absorbed that I completely lose track of time and then do nothing else. It is ridiculous how easy it is for my to hyperfocus lately and how hard it is to stop. I will share a photo of it soon. I was planning to buy one from here, but DH reminded me of one we already had from MIL.

Video about the CAT kit.

I am off to do some colouring in. Yay! I am in the process my own colouring book out of free colouring pages, special paper, coloured paper and raffia.

My chew/bite necklace has arrived! I have used it. Great to use. My son likes it and has had a bite too. I have bought him his own chew/bite toy.

Hope, understanding and a new path in my family

I added one of my siblings and parent to a group called 'Ask me, I'm Autistic' on Facebook in an effort to help them understand me better and bridge the gap of misunderstanding.

My sibling asked this question:

"I am wondering as a family member who is trying to support and understand her sister better, I am wondering what ways to go about this? It seems what I say is always the wrong thing and I hate that because I very much want to support my sister and it breaks my heart to see her so upset and overwhelmed. My sister is an adult who has just recently been diagnosed with Aspergers. I also struggle with being at the end of her venting or outbursts. So what I'm asking is how can I be more supportive and understanding?"

Some of the responses were powerful and incredibly helpful. Tania Melnyczuk, who responded offered much insight into meltdowns.

Here are her responses

"The venting or outbursts are probably meltdowns. It is important to understand the difference between an autistic meltdown and the controlled actions of someone who is behaving badly deliberately. Most aspies don't even know what happens in their own brains during a meltdown, they don't see it coming and they don't know how to prevent one. By understanding how it works in the brain, we can deal with meltdowns more effectively. Sensory overload is also often (but not always a factor). It is a vicious cycle. If you reduce the sensory stress, meltdowns are less likely to occur. Exercise and sleep are important in improving sensory tolerance and meltdown resistance. The way things happen in the brain make it impossible for any normal autistic person to regain self-control in the middle of a meltdown. That is why YOU need to be the calm one, because a person who is having a meltdown cannot just snap out of it. You need to be GENUINELY calm, because an autistic person can sense your tension, and it makes the meltdown worse if they know they are upsetting you because they panic about your reaction, knowing they have no way of stopping."

My sibling then responded with this:

"Thank you. It has definitely helped. My sister often says we don't understand her which I know we don't so this has helped to give a little insight. I understand the meltdowns but what I don't get is: is it ok to excuse the behaviour because of a meltdown or vent? So it's ok for them to carry on and abuse you because they are having a meltdown/vent? It's a good idea to remain calm, sometimes thought its over text messages. What do you suggest I do then? Ignore it until she calms down?"

Tania responded with this:

"I am going to give you a partial answer and at this stage it is still overly simplistic. I will answer in a more nuanced way later because it is not a simple matter. What works well for one does not work exactly the same for the other but here is a general rule: Do not fight back. Be calm and caring as though she were not being nasty towards you but crying in your arms about something which is not related to you. She is not in control of what she is doing and her IQ in that moment is very low. She is in that moment a mentally handicapped intellectually disabled person whose brain has gone into an anxious crazy spin, telling her she is being attacked and causing her to respond in a crazy way with university vocabulary which she learned before she got this temporary brain damage. She desperately needs to know that you have what it takes to not be afraid, not be offended, not be unsympathetic.

To respond in the manner that she is behaving would most likely be an act of will on your part. You can choose your own words and actions. She cannot choose to stop. She is out of control. Her responsibility is to learn how to prevent meltdowns, how to see them coming, how to apologise afterwards, and mostly, how to become a morally exquisite person, the kind of person who is so good and so holy that even if her brain is scrambled and the fight and flight response has been triggered, she will be unable to behave in any manner other than that of a saint. That is the only way she will be able to improve this.

Normal people can get away with moral mediocrity because they have control. People who cannot control themselves have no choice but to fill themselves up with love and righteousness and goodness, because it is the only way to ensure that what comes out of them when they are not in control is godly. 'Good enough' can't carry you where you need to go if you're autistic. I know that it probably sounds like I am being sarcastic, but it is actually just a pragmatic reality. Until she has developed that saintlike character, you are just gonna have to love and forgive her when she acts that way because she does not do it on purpose. A day or so later if she is not in a constant state of anxiety, you can check with her how much of it she actually meant or how she really meant it. If she is able to respond calmly and if you are able to distance yourself from the hurt that you feel. My best friend has been through what you go through when she does that and the emotional strain has been immense for him because he feels attacked and blamed."

My sibling responded with this:

"Thank you, that is just beautiful how you put it! As I was reading it I pictured my sister being the one crying in my arms. I really like the picture you painted because that is exactly what needs to happen. So thank you! I am going to pass some of these comments onto my other family members I feel that these comments have been beneficial and I can try and put them into action."

My sibling has emailed out these two statements to my husband and other members of my family. I think they are starting to understand me. I cannot describe the joy I feel inside after reading this. But...there is more to the story. Which brings tears to my eyes everytime I read it.
Just this evening my sibling and I were texting each other regarding the horrific tragedy regarding Alex Spourdalakis which I am in the process of blogging about.

This is some of our conversation because it did turn into a discussion about Autism Advocacy and how strongly I feel about standing up for those who are different and disabled. Those who do not have a voice. 

It is as follows.

Me:

I'm glad that Tania has been able to help you understand. I am also incredibly grateful about the fact that you are willing to learn and understand me better. Thank you! I really appreciate it. It means a lot. I love you.

Sibling:

I do want to understand you. All of us have been misunderstanding you your whole life and didn't know how to reach u and thought we were trying to do the right things. I'm sorry for all the other times that I have been misunderstanding to you. I know that it just made the situations worse! I know we still have a lot to learn but I am hoping I can apply some of these things that Tania spoke about the article you gave me.

Me:
Thank you. Reading that makes me smile. Yes everyone has misunderstood me my whole life and it is only now that I am starting to understand myself. Which has made it very hard to explain why I am the way I am to others.

Sibling:
I just feel bad for all the times I got upset with you and yelled at you when we were both frustrated. So I'm sorry and I hope you can forgive me pls?

Me:
It's ok. I forgave you long ago. Every time.

Neither of us understood each other

Sibling:

I'm sure it would have been even more difficult for you. I always felt for you when ppl were being mean but I didn't know what to do or say.

Thanks I appreciate that! I have forgiven you too!!

Me:
We all did our best with what we knew.

It's the past. I'm not going to get upset over it. We are starting a new journey of understanding as a family now so things will be different.

Sibling:

Yes we are, of building bridges and mending hurts from the past!