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.

It's not just a phone call...

It's not just a phone call or why the unexpected is challenging to adjust to

Today I finally built up the courage to make a couple of phone calls I really need to make. That I have been needing to make for a few weeks. I have big to do list which I am attempting to get through and these phone calls were one of the most important things to do.

Here are two fantastic cartoons by the Oatmeal which articulately illustrates why I dislike making phone calls, in particular phone calls to Customer Service type places where one has to spend most of their time trying to get a robot to understand you, and then wait for eternity listening to irritating music to actually to speak to a human and then finally speak to one. One is a bit crude (warning for those who are easily offended).

10 Reasons to avoid talking on the phone and Why I would rather be punched ... than call Customer services.

So I dialled the number for the first call and waited. I went through all the robot questions and waited, listened to irritating music. I finally got to speak to someone and then they said they had to re-direct me to someone else. So I am waiting on the phone listening to irritating music waiting to speak to an actual person when I start to hear *beep* *beep* and I know what this means. I think 'NOoooooooo!!!' The cordless phone battery is going flat. I have only been on the phone for less than 10 minutes and it is already going flat. I pretty much see red straight away. I am beyond mad and frustrated with the whole situation. I shout, vent, say some choice words and slam the phone down, even though it is a cordless phone and I just need to push the button.

It is not just a phone call. It so much more than that. I put so much effort into getting to a place where I was able to make those important calls. Now that opportunity has been stripped of me and I have no idea when I will be in a place to cope with making them again. These days since my Autistic burnout simple things like a phone call take much more effort. I have to be in the right frame of mind, with enough spoons, and my executive functioning must be at a level where I can cope with talking to a stranger and explaining the things I need to explain. I have regressed. My functioning levels are much lower and my Autistic traits are more severe since my burnout. I have no control over this. I cannot just suck it up and keep trying as I have been told to do in the past. I am too worn out. Day to day living is enough for me to manage, let alone extra things like phone calls.

I have had this big list of things to do written down for awhile and it keeps growing as time goes on. I have had unnecessary stress of family misunderstanding me and doing things which were not helpful or supportive at all. Thankfully we had a family meeting and have mostly sorted this out. However, due this unnecessary stress I have been unable to manage anything barely except looking after myself, as I have spent most of my time in either shutdown or meltdown on and off for the past few weeks because I was forced into stressful situations when I was not able to cope with them. So I just have not had the spoons or executive functioning to even attempt anything on my list. It was all too overwhelming. Thankfully now that my family understand me better, that has taken the pressure off me as they were expecting things of me that I could not realistically do. Not in my current state. I am still incredibly drained from all that has happened the past few weeks but am slowly recovering. The relief of having my family understand me gave me some extra spoons so I felt I was able to manage the phone call. It still took me more than half the day to get to the point of actually making the call. But the cordless phone had other ideas.

I had taken so long to build up the courage to make these calls and then slapped in the face with flat batteries before I even get to talk to a person instead of a robot. Incredibly frustrating and upsetting!

It's not just a phone call. It's so much more than that. It was to be the beginning of me starting to organise myself and get on with the things that need doing. It was many things.

My husband was home so he removed my son while I ranted and raved. I knew I had to burn off some energy to calm down. So I got myself ready for a walk and off I went. I walked for 40 minutes listening to relaxing music. I also stopped at a playground and had a swing for about 10 minutes which was very calming. I returned home a much calmer person. I was still mad but calm enough to think clearly. I was mad enough still that I poked my tongue out the useless flat phone and then I laughed which broke the tension. 

Needless to say we have a non-cordless phone now. I will attempt to make these phone calls next week. I am going to have a very quiet, relaxing weekend and do lots of self-care to regain spoons from all the stress over the past few weeks.

To others it would appear that I am getting extremely upset and having a meltdown over a silly thing but really I am not. They do not understand the background to why it is upsetting and frustrating for me. This happens to me with other things too. It is very hard for me to adjust to unexpected change when I am really counting on something I really do need to do.

So just remember it's just not a phone call... or any number of things. It is more than that.

Riding the intense emotion wave

When I feel an emotion from being triggered by something, it is intense, strong and incredibly overwhelming. I cannot think of anything else. The feeling fills my entire body and my mind. It is hard to focus on anything else, but my feelings. I cannot see a way out feeling that way. My intense feelings consume my entire being. I can easily end up in a downward spiral of catastrophic thinking and depression.

It's partly catastrophic thinking and partly because I feel things so intensely that I feel it will never end. My psychologist has been helping me to understand that emotions are like waves. They reach a peak of intensity and then it slowly eases. I am learning to practice mindfulness where I observe my thoughts, acknowledge them, but don't allow them to take hold. I focus on my breath, my feelings and thoughts. I have started saying to myself 'I love and accept myself unconditionally in this moment.' I have found the moments of intense emotion pass much quicker and I do not spiral into a depressive episode when I do put these things into practice. My psychologist suggested emotion surfing which I have tried and I am still putting into practice. It is a bit of a challenge for me not to react to things said to me. I want to learn to be more in control of my emotions and not hurt others without meaning to.

Prior to this I would fall into a depressed heap unable to get out of the emotional pit I had dug for myself. I would beat myself up for feeling this way, for acting the way I did, for not being able to manage my emotions better like others appeared to. I did not understand how my brain worked so I could not work with myself. Once I began to understand myself better through Autistic eyes I began to feel peace, love and acceptance for myself. The self-hate began to lose it's power over me and I have been able to move forward. I still do not manage my emotions as well as I would like to but I am setting up a strong foundation that in time will help me to do so.

Edit:

I have since been made aware of the fact that what I am learning and practising is called Dialetical Behaviour Therapy (DBT). 

Self-harm and Autism

There are different forms of self-harm. e.g. biting, hitting oneself, cutting, head banging, eye gouging, face or head slapping, skin picking, scratching or pinching, hair pulling, hand or arm biting, cutting.

I used to be ashamed of the fact that I self-harm. I didn't even know there was a word for it until recently. I didn't understand why I did it. I just knew I had to, to cope.

I self-harm by biting my wrists. I am trying to re-direct it. It comes from my childhood when my Father berated, abused and belittled me. I was never taught how to manage my intense and overwhelming emotions. I was expected to behave at all costs, any further emotional outburst was seen as defiance which resulted in further punishment. So to cope with my intense emotions I turned to biting myself to relieve the emotional pressure so I wouldn't get punished. I wrote a blog post about how my Father tried to discipline the Autism out of me and how incredibly detrimental it has been to my mental health. So I am trying to now re-direct years of using self-harm to manage my emotions into a healthier way.

I have also slapped myself in the face (at times, not often) when I am incredibly frustrated with being misunderstood by someone else, usually my husband. It usually comes from a place of already feeling low self-esteem. We will be arguing and I will just slap myself in frustration, repeatedly, because I do not feel heard. I do not get a release from it, it is more about being misunderstood and not being able to get my words out how I need to, in order to get my point across. So I get physical and self-harm. I now realise that I was heading into shutdown which means I lose my ability to speak. I am now more accepting of this shutdown process so I do not force myself to speak when I cannot. I do not feel a need to slap myself in the face very often because I accept this process. I tell the person I am having disagreement with that I need to take break and talk about it later.

I am in the process of setting up a sensory/emotional regulation kit (I will share mine on my blog once it is set up) which includes a bite/chew necklace. I got mine from Ebay. The link I shared is just one place you can buy such a necklace. If you type into google 'Autism Aspergers chew bite necklace' a whole range of websites and online shops will come up. There is plenty of range. I am considering getting this have just bought this chew toy too. I get so much satisfaction from biting something. It is a release of pressure for me.

Further reading:

Self-injurious - From thAutcast

Autism, pain and self-injury

Fantastic Blog post series about self-harm

Anatomy of a meltdown The writer discusses about self-harm as being part of her meltdown and the release she gets from self-harm.

The high cost of censoring or why stimming is a good thing