my brain

My Brain Review

my brain
What Depression Looks Like in the Brain

I received my brain over 46 years ago. I think I was given a prototype that hadn’t yet had the glitches ironed out. A gift nonetheless. Repairing the glitches and disarming the many self destruct buttons has been my job.

Incorrectly placed, faulty circuit breakers between my brain’s communication ports have seen some erratic and extreme behaviours and thought patterns over my lifetime to date.

My brain first showed signs of irregularity when I was little. Miss Minnie became my alter ego when I got into trouble. She had a purple elephant and drove a mini (if I remember the story correctly) and was quite eccentric, but perfect. This brain of mine holds some strange memories and visions from under the age of 8. I am so certain of them, they are still so clear, yet I have always questioned their reality.

From my teenage years my brain has struggled with addiction, with the effects of multiple traumas, depression, anxiety, self confidence, my weaknesses, my strengths, and the inconsistencies and seeming polarities of who I am.

I have a brain that is intelligent, stupid, knowledgeable, naive, empathetic, judgemental. It is childlike, old, inquisitive, bored. It can be so happy but then so dark. It’s assured yet insecure. It trusts, but has no trust. It can love so deeply yet be so bitter. This brain can be my best friend and my own worst enemy.

But, it has given me the life that I have. And a rich life it’s been. Without this faulty brain of mine I wouldn’t be who I am today. I have a long way to go. But because my brain has my back way more often than not these days, I’m rating it a 3 out 5. There are many glitches I’m still working on. I’ll review in another 5 years and see how the repairs are going.

my brain

What would your brain review look like?

Submissions being welcomed  at https://mindfump.com/2017/02/11/submissions-wanted/

cares

Who Cares for the Carer?

caresWho cares for the carer? It’s a good question. Raising children with mental health issues, it’s not often something we think about. All our efforts go into parenting and dealing with the daily issues or stresses associated with mental health conditions. We are usually the last person we think about, if we consider ourselves at all.

Why is that? Do you tell yourself you don’t have the time or the money? Does it make you feel guilty doing something positive for yourself while your child is struggling? Whatever the reason, it’s a faulty way of thinking that we can change.

We are the rock for our kids, we need to be the strongest we can be. At some carespoint that rock is going to crack without regular self care. When I first began learning to take time for myself amidst the chaos of daily life, it was suggested I make a Safety Plan. It’s simply a list of things to do when life is not going so well and I’m feeling really stressed with Jessie.

When the brain is acutely stressed we can’t think clearly. The idea of the safety plan is to give some written direction and respite in those occasions of extreme crisis. It takes you away from the potentially unsafe situation and allows you time out to calm down. In turn it is hoped that the risk of harm to yourself or others (physically, emotionally or mentally) is greatly reduced.

My daughter read my articles last week  about her early onset bipolar. She told me how she was glad that she went through that really violent time when she was younger. Her reasoning was that she is only getting bigger and could have really hurt someone if she was an older teen or an adult.  Even at 12 her strength in her rages was overpowering. De-escalation before it gets to that point is a skill Jessie now has and uses. As we use our Safety Plans and learn to de-escalate, it eventually starts to have a flow on effect.

caresThe simplicity of the Plan is what makes it so effective. If you are no calmer after the doing the first thing on your list, you go to the next, etc, etc. If you get to the end of your list and you’re still feeling wound up, start from the top and work your way down your list again. Do this as many times as you need.

Make your Plan personal for you. Remember it is NOT for goal setting, Don’t add going for a jog if it’s something you think you should do, but never do. Don’t leave out having a cigarette if you’re a smoker. This is about indulgence! Anything that could cause us to feel like we’ve failed at something is categorically forbidden!!

Include activities that are practical and doable in any moment. Add between 10-15 activities. Choose things to do that you enjoy and that will have a calming effect. Keep it on the fridge or somewhere where you can’t miss it as a chaotic mind is likely to forget you even have it. This I know from experience!

As time moves forward you can alter your plan to add new hobbies or delete old caresones. My Safety Plan is still in use, although I now call it my Self-Care Plan as I feel safer now with less volatile and distressing times. I have so much more confidence in myself as a parent than I’ve had in preceding years. I must admit it could do with an update. You will find that the more you use your plan, it will become second nature and will not require as much consultation. Still, it’s a handy tool to always have.

To give an idea of what a Safety Plan can look like, this is my original list;

  • sit on my balcony and have a cigarette
  • make a cup of tea, sit outside and be grateful for my garden
  • do some work in my garden
  • smile and think of things I’m grateful for
  • sit on my bed and do a quick meditation
  • read over my Tuning Into Teens course books
  • call Mum
  • play HayDay
  • write in my journal
  • contact a friend
  • call Parenting Line  1300 1300 52
  • call Lifeline 13 11 14

Smiling and feeling grateful has an amazing effect on mood. It really does make you feel more positive. Try it, and if your mood doesn’t lift, smile for longer, be grateful for something smaller (could be as simple as being grateful the sun is shining).

So, who cares for the carer? The answer is you.

 

cares

language

Giving Kids Language Around Emotions

Language is the most powerful tool we have. 

 Language gives us the means to:

• communicate our thoughtslanguage
express our feelings
ask for what we need
negotiate
• learn
• teach
• understand
• belong

Take a long, deep breath in through your nose…and slowly exhale.

Imagine you are in a tiny space, about the size of….you. There are no windows and it’s dark and usually stormy. The door seems to be stuck closed and you can’t get out. The thunder is so sudden and deafening. The lightning strikes so bright and frightening. The air is becoming thick and clammy. Fear starts taking over. Then you start fearing the fear. Claustrophobia starts to set in…

This is too much, you need to get out! You NEED to get out!! You can hear people out there. Your breathing is fast and feeling laboured. You think you are pleading with them for help, but all they can hear is the storm. You are begging, crying. You just need someone to open the door, even just a bit. But all they hear is the thunder. All they see is the lightning. There’s only one way you’re getting out of there – and that’s to explode. With that comes collateral damage, but at the time there doesn’t seem to be any other option.

Now imagine you have language and are simply able to say, “The storm’s getting too much in here. Could someone please open the door for me? It seems to be stuck and I can’t open it on my own today.”

languageThat’s my analogy on what it’s like for kids who have mood disorders before they learn language around it. Jessie grew up with me reminding her to use her words, but she didn’t ever have the intensity of emotion she grew to have. When emotions hit the red zone for Jessie, she used to become extremely abusive and aggressive. Those feelings can be consuming, confusing and frightening for adults. Children can find them even more so as they simply don’t have the maturity or understanding to handle it.

As parents, with the right tools, we can empower our kids with positive language skills.

We started off with a sealed jar of water with coloured glitter in it. It’s purpose was to encourage Jessie to recognise when she was escalating. It then gave her a means to communicate that to me in a more positive manner. The jar sat on the kitchen bench. She would go to it and furiously shake the jar and say through gritted teeth, “my glitter is all over the place!!”. The colourful glitter would flutter around in the water, taking her focus off the blackness of her mood. Jessie used that until the glitter had no more colour. It was well used and very effective.

We then had an emotion chart that I put on the fridge. It was for both of us, so we could let each other know where we were at. We had a magnet each and would place it in the relevant quadrangle. Jessie used this willingly as well. Kids want to have a better outlet, just as much as they need it.

self harm

There are so many emotion charts to choose from online. Click here for some examples on Google. They are a fabulous teaching tool, because it requires the kids to read through the emotion names to choose the relevant feeling. Without them even realising, they are learning language to help them express themselves constructively.

A favourite of Jessie’s, used during our admission at Coral Tree Family Services, were St Luke’s Innovative Bear Cards. From the picture you can see why children are drawn to these.

coral tree

Talking to our kids about the cards or emotions they have chosen is an important part of their learning (or re-learning) process. It gives us insight into how they are thinking. It also gives us the opportunity to emotion coach.

With language around her feelings, and the confidence she has gained in communicating with me, Jessie has a much better handle on things. 2 years on she will still have low scale outbursts, yell, swear and slam doors. However she de-escalates very quickly now, and without fail comes and apologises and we talk about what’s upsetting her.

Being able to recognise and name emotions, makes kids feel more in control. The more in control they feel, the less out of control they will behave.

language

 

volatile

Our Volatile Years After Bipolar Diagnosis

volatileAs I read and learn more and more about bipolar disorder, I realise that Jessie has been textbook. The volatile behaviour in children with bipolar is extreme and common. Physical violence and verbal abuse is not short lived as it is with ADHD. Whereas rages in ADHD children usually last 30-40 minutes, they can last for hours with bipolar kids.

Jessie was typical in that she experienced the rage and aggression, and rarely the euphoria or elation. Discipline was fought, and she couldn’t deal with disappointment at all. She would fly into violent rages, smashing my things. Foul language and screaming abuse at the top of her lungs became Jessie’s way of communicating. I used to wonder if she’d just become a spoilt brat. Her behaviour was so out of character, and so extreme. In fact, she was actually behaving as kids with bipolar do. And understandably so – kids don’t have the understanding or maturity to cope with emotions bigger than themselves.

volatile

I was parenting the way I always had, but Jessie stood up to all discipline and raged at any disappointment. Life was incredibly tumultuous in our house, and at that time I felt like I was between a rock and a hard place. Any parts of me left exposed were being squished between other rocks and hard places!

The abuse and destruction were what I found the hardest to cope with. I don’t stay in abusive relationships. But, you can’t leave your child. And she was no more than a child – she was just triggering things in me. Therefore I was hearing her as if I was listening to an adult. I had no control though and there’s nowhere to escape to to get away. Jessie would relentlessly follow me around the house, wherever I went – literally! She’d be in a rage, calling me every name under the sun, throwing things, smashing things and damaging my things. She was a baby the last time she saw her father, but I couldn’t get over their behavioural similarities and ways of thinking.

volatileBeing on a first name basis with many of our local police was just how it was for a couple of years. Jessie’s experiences were undoubtedly traumatic for a 10-11 year old. Calling 000 became a necessary safety measure for us both. It came to the point where I’d ask for an ambulance and the police would turn up. Every time. I only just realised why as I’m writing this – maybe only the police can section someone under the Mental Health Act, not paramedics? Police drove Jessie to hospital a couple of times, but due to self harm or talk of suicide, she usually travelled by ambulance. This could happen up to 3 times a week.

On two of those occasions she went against her will – carried out by police with wrists and ankles cuffed with the plastic tie-like cuffs they sometimes use. I’ll never forget it. At 11 she was carried out this way after being put down on the lounge with a knee pinning her head down until she settled enough to cuff her. Jessie was spitting at the officer, trying to bite her, fighting to free herself and swearing at and abusing the officer. The officer tried to get Jessie to settle, but she was out of control. She had got to that point where the brain flips and reason can no longer be seen. It was so distressing, I was in tears. And by the end so was Jessie. volatile

Police applied for an AVO for me against Jessie when she was just 11.  She’d chased me with a big knife, but fortunately my bedroom door came between us! It still has 8-10 stab marks in it. Police would arrive to what looked like the aftermath of a cyclone! Jessie had destroyed so many of my things, and the unit was being damaged. With the strength that comes with such rage, Jessie was a danger to herself and to me.  We’d had the Sergeant come a few times to say something had to change. Well no shit sherlock, but an AVO wasn’t the answer! Thankfully the court agreed. Jessie needed help. Psychiatric care was what she needed, but her aggression and volatility, along with her young age,  made her ineligible for any of the many programs we applied to.

It was such a horrible time. And there was no respite. Our caseworker, Stella, from The Benevolent Society was truly our saving grace. There were times when I said to her that I couldn’t do this anymore. I’d had enough, Jessie needed to go into care where she could have good parents. For so long I seemed to get more wrong than I did right with Jessie. Consequently my confidence in parenting plummeted. I didn’t know this young person. How to deal with her was something that actually felt impossible at times.

volatile
Jessie decided my wardrobe’s face needed rearranging…

Stella would remain calm and talk to me. Not once did she accept my parenting resignation, neither did she ever actually refuse my request for a better home for Jessie. She didn’t need to. She listened, she heard me and acknowledged where I was at and why. During  our conversation she would teach me about Jessie’s behaviour, and remind me that I’m a good mum. By the end she would ask me if I still wanted her to make some calls. Of course not! I always felt empowered and determined after these visits where my frame of mind was so defeatist at the start.

I completed the Circle of Security parenting course with Stella. Doing one on one I was able to do that one in a lot of depth,  relating it to specific situations I encountered. It’s a BRILLIANT course that every expectant parent would benefit from. It gives parents the opportunity to learn what babies need emotionally to grow into confident, resilient, well balanced people. The principles apply to children of all ages though, and I found it invaluable. It is all about positive, calm engagement, and recognising, understanding and attending to children’s emotional needs and behaviours. This is the parents’ manual we all wish we had!! It should be way more widely promoted!

Another brilliant course is the Triple P Positive Parenting course for parents of teens. The principles are very similar as Circle of Security, but you learn about the teenage brain and what changes it is going through. Positive communication skills are also taught along with practical example responses. There is a Triple P parenting course for parents with kids aged 3-8 as well, for anyone who is interested.

It’s been 3 years since I’ve needed to call 000 and home life is very different now. We have other challenges we are currently faced with, but the highly volatile days are in the past. These days Jessie apologises to me if she speaks to me in an angry tone, or storms off slamming her bedroom door. She’ll then talk to me about what upset her and why. Our bond is strong and has proven to be enduring which I really love.

volatile

Remain calm.

Listen to hear.

Respond to acknowledge.

 

 

christmas

The Christmas Boycott of 2016

christmasChristmas Day felt so strange. The whole lead up to Christmas has felt ‘dishevelled’ to me. It’s always been a time of great excitement and enthusiasm, with the tree and decorations put up on December 1. But not in 2016.

christmasMy daughter Jessie had told her Nanna 6 weeks or so ago that she didn’t want anything for Christmas. Not only that she did not even want to celebrate the occasion this year. She remained adamant about that, insisting there was nothing she wanted. But how can we celebrate Christmas and not have anything for the only child/grandchild/niece in the family? It just doesn’t sit right! So, as Mum, I put a couple of things on her wish list.

Initially I suggested the rest of us volunteer on the day, and not do presents. Dad wasn’t keen on that idea! He wanted presents! My reaction was that I  didn’t want to celebrate without Jessie. I wanted to boycott too! So Mum did all the research, and we decided on our charity, The Exodus Foundation. They are a fantastic organisation who provide support for the homeless and disadvantaged. Certificates for working with children were required so we put our applications in. Mine took over a fortnight to be approved. Consequently, by that time we’d missed out on positions that didn’t require specific qualifications.  A working with hazardous materials certificate was even required to be a volunteer cleaner! With knowledge, we’ll be better prepared if it looks like Chrissie is a no-goer again with Jessie in 2017.

christmasGoing full circle, we decided we would have our family lunch after all, and celebrate with gifts. I continued to hope Jessie would change her mind, but it wasn’t to be.

It was a little sad leaving for Christmas lunch at my parents’ place. Jessie was asleep, and tired when I woke her, so I left her present on the end of her bed. I missed the joy and anticipation of previous years. I really had to suck it up, and not let myself get upset.

The psychology behind Jessie’s choice I don’t understand, so I cannot shed any light as to how a teenager could refuse Christmas. I have read many articles on what can make this time of year difficult for bipolar adults. Reasons include over-indulgence, finances, relatives and stress – understandable for adults at this time of year! In researching the issue in kids or teens, I have been unsuccessful.

Although we don’t understand, my family have been so supportive of Jessie which I am incredibly grateful for.

It can be difficult not to take Jessie’s ‘rejection’ personally. Surely if she loved the family she would want to see them – right? It’s not that cut and dry with bipolar or with Jessie. This is about her, not about any of us. Jessie is finding the outside world too confronting. People scare her – they can really hurt her, and she feels safest in her room. Still, it does affect us all. my family misses her, and we all worry about her.

christmas

 

 

psychosis

Psychosis and What It Looks Like for Jessie

psychosis

Finally Jessie agreed she needed to see her mental health care team, and we had our appointment this morning. Her psychosis has been getting worse over the last 6 months, with the last 8 weeks being the worst. She’s had a couple of quite frightening experiences. Hence my relief Jessie attended the appointment.

I was so proud of her. She talked openly and honestly for the best part of 45 minutes before clamming up and wanting to leave. They’re not experiences she likes talking about twice. For them to stop is what she’d like. Jessie’s psychiatrist is concerned – I had a phone call an hour later asking us to come back in. An appointment has been made for just after we return from  our annual pilgrimage up north.

psychosisJessie has aural and visual hallucinations, or the feeling of being in a distorted reality. She hears people talking around her, although they’re not actually talking to her. The voices don’t tell her to hurt herself or do bad things, which is apparently a differentiating factor from schizophrenia. Tapping, high pitched beeping or buzzing, and scratching noises are other things she hears. She often asks me if I can hear the sounds too, but there are no sounds.

Figures moving quickly in her peripheral vision, faces appearing in front of her, a woman dressed in early 20th century outfits walking into my room, and a little boy are all apparitions she see’s. Nightmares had been haunting her, and lingering until the afternoon. Jessie has salt next to her bed, and I was given a small bag of white sage last week. I put some in her pillowcase and she hasn’t had a nightmare since. Either it works in warding off bad spirits, or it’s psychosomatic, deep in that curious and amazing brain of hers.

Less recently were  delusions of magical abilities, although they may have gone underground! Her fire controlling ability wasn’t working the day she and a friend decided to try and control burning wax and tissues in a baking tray in her room. My initial reaction was, naturally “WHAT THE FUCK ARE YOU DOING??!!!”! It just came yelling out of my mouth – hence the word ‘reaction’! It’s pretty hard to backtrack from that, but with Jessie now freaking out, holding this tray with liquid wax ablaze and unstable in her trembling hands, I had to  goddamn try!! First thing – DEEP breath. Second thing – solution. Suffice to say it ended safely with the only victim being my baking tray. Easily replaceable!

Jessie has called me into her room on a couple of occasions. She has been lying psychosisthere motionless, frightened, and feeling strange. My voice was too loud, she needed quiet. She couldn’t handle being touched, she just needed me to be with her until it passed. Afterwards she has no clear memory of it. Being epileptic myself, those symptoms are very familiar, so we need to find out what’s going on.

A visit to our lovely GP is the next step. Jessie’s psychiatrist has already spoken with him and faxed a 2 page letter bringing him up to speed. She needs a full medical to rule out environmental factors, which includes a blood test. A few negative experiences having bloods done has lead to her fearing and so refusing them. Now’s the time she needs to be proactive and push through her anxiety. I’ve bought Emla patches which will anaesthetise the area, and I’ll get her to listen to her music. We’ll see if that helps.

We need to get referrals to have an EEG and and MRI done to look at brain activity. I don’t think any of us believe she has epilepsy, but best to cover all bases.

Another possibility is that she can see and hear the spirits around us. Not that I can say that to medical and psychological professions! Whatever the reason, she’s too young to deal with this yet. She needs to be a teenager.

So what for now, dealing with psychosis?

Jessie will be put back on an antipsychotic medication in January With any luck that will minimise or stop her symptoms either way. She just wants it all to stop, so hopefully she’ll continue to do what she needs to do to help herself, as we all want to help her. Until our appointment next month, we keep dealing with it like we have been. Jessie’s a trooper!

psychosis

 

 

manic depression

Manic Depression and its Evolution to Bipolar.

manic depressionManic depression was the name previously given to the mood disorder, bipolar. Back in the late 1800’s the work of Jean-Pierre Falret, a French psychiatrist, led to the term Manic-depressive psychosis becoming the initial name for this mental illness. He identified the “folie circulaire”, the circular insanity of manic and melancholic episodes, interspersed with periods of balanced emotions. It’s interesting how the word psychosis has been dropped. Variations on the bipolar spectrum are now taken into account.

German psychiatrist, Emil Kraepelin,  was the next to officially define and classify psychosis. In 1902 he differentiated two main types of psychosis – mood and thought. Consequently, ‘manic depression’ he used to describe mental illnesses that centred around emotion and mood. ‘Schizophrenia’ (then called manic depression‘Dementia praecox’ meaning premature madness), he classified as mental illnesses to do with thought or problematic cognitive function.

History saw another important step in the evolutionary ladder to the distinction of manic depression. In the early 1950’s. German psychiatrist Karl Leonhard first introduced the term bipolar. He did this to differentiate unipolar depression (major depressive disorder) and bipolar depression.

1980 heralded the year the term manic depression was officially changed in the classification system to bipolar disorder. This came about with the third publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM).

So Why Change the Name Entirely?

  • The main reason seems to stem from the stigma attached to the word ‘manic’. Especially relevant, it denotes crazy, out of control connotations which psychiatrists wanted to steer away from.
  • Bipolar sounds like more of a clinical term and less of an ’emotional’ term. As such, it was another way psychiatrists thought would help reduce stigma.

Well that was the theory anyway. Having a daughter who is bipolar, that term is just as emotionally charged these days, at least in the teenage world. The term is used flippantly to describe a change in emotions or a change of mind. It is used just as flippantly as a derogatory name given to someone who has had a change in emotions or thoughts.

  • With the classifications becoming more defined, bipolar would include and exclude mania dependent on the type of bipolar. Manic depressive stereotype excludes by definition those types of mood disorders without manic episodes.

There are four types of Bipolar disorder recognised in the DSM-5. They are:

  • Bipolar I disorder. This type has manic or mixed episodes lasting at least a week. Manic symptoms need to be severe enough to require hospitalisation. Depressive episodes are often present as well.
  • Bipolar II disorder. Hypomanic, or depressive episodes are present, however no manic episodes.
  • Cyclothymic disorder or Cyclothymia. This a milder form of bipolar with both hypomanic and milder depressive episodes for at least two years.
  • Bipolar Disorder not otherwise specified (BP-NOS). There are symptoms of bipolar present but the criteria for any of the above three types are not met. This type is diagnosed when the symptoms are not normal behaviour for the person.

manic depression

depression

Depression: It Is An Illness I Have, It Does Not Define Me

depressionDepression is one of the most common mental illness in our society. In fact 1 in 6 women and 1 in 8 men will experience depression at some stage in their lives. It is not racist, sexist, or age discriminatory. Depression is a brain illness that impairs cognitive function to varying degrees depending on the severity. A depressive state can last weeks, months and sometimes even years.

A lot of research has been done and huge progress made in the understanding of the brain function and what affects the neurotransmitters and hormones. Direct causal links have been made between these and other biological functions and the development of depression. Despite this, there are so many who still think it is a choice.

depression

depression

Depression is not simply feeling down or sad, it is an illness that can have serious effects on the body as well as the brain. Loss of appetite, erratic sleep patterns, chronic fatigue, muscle aches and pains, headaches, lack of energy, poor concentration and feelings of guilt and low self esteem are all symptoms that can affect day to day life.

depressionAccording to the Australian Bureau of Statistics, 2015 saw suicide the 13th leading cause of death in Australia. 33.9% of deaths amongst those aged between 15-24 was due to suicide. 27.7% of deaths were due to suicide in the age bracket of 25-35, and 16.9% attributed to suicide for those between aged between 35-44. Sadly 3,027 people took their own lives in 2015 in Australia. One of those was a girl in my daughter’s year at high school. If attitudes and resources were better I  wonder how many of those people would still be here?

I was first diagnosed with depression many years ago and have since been diagnosed with a major depressive disorder. They sound like they must be two different types of depression, but it’s simply newer terminology. I’m most susceptible to negative, hurtful words and actions against me. The level of understanding I have as to why I’m being treated like that, combined with how much it hurts, seems to determine how bad each depressive episode is.

depressionMy appetite is affected first, but general anxiety does that too. I got down to 37kgs in my last bout. I couldn’t sleep for more than 4 hours no matter how tired I was. As soon as I’d stir my brain switched on and thoughts started swirling. I didn’t want to sleep because I dreaded waking up to that. Some days breathing hurt, and as overly dramatic as that sounds I know those who’ve been through it will understand. It took huge effort to move from one room to another. My goal each day was to at least shower, and if I did that I felt I’d achieved something that day. It’s like living in a heavy black cloud. Each day is too long to have to be with my thoughts. It’s such a huge effort trying to talk myself around, there are too many tears to cry, and it’s so lonely.

My EMDR treatment is working, healing one issue at a time. I have a lot to deal with, some self inflicted due to foolish choices, others beyond my control. I’m sensitive as well so it’s a learning process accepting that and embracing my strengths. My psychologist left me with something to think about last week. She suggested to me that I don’t have depression. What if it’s just that I’ve had trouble coping with the string of really challenging life experiences I’ve had? It’s a concept I’m open to! I actually currently believe that as the EMDR takes the memory out of the body, my depression will go away as well.

depressionMy proactive choice is to continue to learn how to learn from life. Experiences can make us stronger – if we know how.

hikikomori

Hikikomori – Could Jessie Be Part of This Anti-social Society?

Can you imagine a life confined to your bedroom?

hikikiomoriHikikomori is the term for what was traditionally considered a Japanese phenomenon of social isolation. I’ve done a lot of reading about it after Jessie’s psychiatrist put it forward as a possible explanation for Jessie’s withdrawal from life. Hikikomori describes the occurrence itself as well as those who isolate themselves.

The term Hikikomori was first created by Japanese psychologist, Tamaki Saito*. He is considered around the world as the leading Hikikomori expert. 20 odd years ago he defined hikikomori as “a state that has become a problem by the late twenties, that involves cooping oneself up in one’s own home and not participating in society for six months or longer, but that does not seem to have another psychological problem as its principal source.” *(previous link)

20% of Japan’s males are believed to be hikikomori. Interestingly though, with Japan having a very high suicide rate amongst young men, the suicide rate in hikikomori is low. Maybe allowing them to live within their own boundaries, no matter how strange they may seem, takes the unbearable pressures away. Usually coming from middle class families, parents can afford to support their children through these times. Some people are stuck in it for decades and reaching their 30’s. This group call themselves NEET – Not in Education, Employment or Training. Oddly this term comes from England, so it seems to be borrowed terminology. Or is it simply that it has been seen in other countries with the same or similar variables?

I remember reading that distance education programs were setup in Japan in an attempt to accommodate those NEET. We are so lucky in Australia to have such a fantastic distance education scheme. Support is given to all it’s students.

In more recent times, researchers have come up with six affects required to diagnose hikikomori.

These are:

  • spending most of nearly every day confined to home,
  • noticeable and ongoing avoidance of social situations,
  • symptoms interfere significantly with the normal routine, work or school, or social activities and relationships,
  • perceiving the withdrawal as egosyntonic,
  • duration of six months or more,
  • no other mental disorder that accounts for the social isolation and avoidance.

The causes are not well known, but what seems to me contradictory to the last identifying factor of hikikomori, is that it is hypothesised to be on the autism and Asperger’s spectrum. Similarities have also been drawn to PTSD, avoidance personality disorder, schizoid personality disorder or social anxiety disorder.

Other hypothesised causes are social stresses, bullying and parental pressure for scholastic or financial success. In Japan these expectations are placed heavily on the shoulders of the first born son or the only child.

hikikomori

I’ve been unable to locate reliable statistics for recorded numbers of hikikomori in Australia. However I did come across this recent article by Bren Carruthers, member of the UMSU. He talks to an Australian reformed hikikomori and provides thought provoking content, well worth a read. I’d also be curious to hear about a longer term recluse and find out what helped them reform.

Jessie has been confined to her room for nearly 12 months, apart from our trips up north. Occasionally I can get her to come shopping with me, although she is usually in her room. She won’t come to her grandparent’s or uncle’s to visit, and hasn’t done all year.  Her love for them hasn’t changed, Jessie just doesn’t want to be too far from the darkness of her room. Even the things she used to love, like the pool and the beach, cannot entice her out.

She really has isolated from most everything that requires personal interaction. Jessie is lucky in that she has one friend with which she communicates daily. Most of all they are very close and very supportive of each other. They catch up for a sleepover here whenever they can. Jessie has her two subject lessons per day to complete.  However she also researches her bipolar and has an incredible awareness now of what’s going on with her. Some days she watches movies or her favourite TV series.  She also writes a lot, and has a good following on tumblr apparently. Her mind isn’t idle!

The signs are there for hikikomori. However Jessie’s pre-existing conditions could be linked to her societal isolation. Thankfully she hasn’t cut off from me and I hope she never will. We communicate openly which makes a strong bond. And if Nanna needs help with her website Jessie will come out to sit and help. Her self imposed isolation is quite extreme though, and sadly she doesn’t even want to celebrate Christmas this year. As a result it’s not going to feel the same without her.

These teenage years are difficult ones with many changes occurring in the brain. Consequently I can only hope for Jessie that as time goes on she will find enough peace to re-engage with society.

hikikomori

Each day is a new day, in which anything can happen!

 

education

The Clash Between Mental Health & Education

education

Education and Jessie’s mental health have not gone well together well for us. The education system isn’t setup for kids like mine. Teachers simply don’t have the training needed to help these kids successfully get through. It’s a very rigid and structured system that cannot accommodate kids who simply don’t fit into square holes.

I received my first letter from Dept of Education when Jessie was in Year 5. Threats of court and an $11 000 fine for not sending my child to school. It’s pretty intimidating, especially when the times I did drag Jessie to school, I was asked to take her home again. When she didn’t want to be there, nobody could settle her.

Finally in the second half of Year 6, the school was granted funding for resources for Jessie. I was told that they would be employing an aide 5 days per week for 3 hours daily. I was to stay with them until Jessie was happy to stay on her own. As it turned out they employed a lovely lady, but she could only do 3 days as she worked in other positions within the school. She then moved overseas, so Jessie hung around with another teacher’s aide when she wasn’t busy. That fizzled out pretty quickly and I was asked to keep her home. I have no school photos or school reports for Year 6, and sadly Jessie missed the graduation celebrations.

educationShe transitioned really well into Year 7 to everyone’s surprise. She had a few issues but a plan was put in place for her, which worked really well once the teachers understood. Jessie can’t stand a big fuss when she’s not coping so I suggested that when she puts her head on the desk, that she be left alone, and the teacher just continue on with the class. This worked perfectly, and her teachers reported she was able to regulate and get back involved with the class quite quickly.

Her peers were her greatest problem. She used to get bullied because of her emotional outbursts. She’d tell the girls her diagnosis I think in an attempt to ask for mercy, but naturally it only gave the girls more ammunition. She still can’t understand that that’s just the way it works with bullies.

Year 8 started well. Jessie didn’t miss a day all first term. Then it all started going downhill. She had some clashes with a couple of her teachers and the usual problems with friends. At the parent teacher night I realised that none of her teachers were aware of Jessie’s issues, or the de-escalation plan for her. She had been getting into trouble for putting her head on the desk. When I raised this with Jessie’s year advisor, I was told that I was incorrect and that all of her teachers had been informed. Strange that they would all forget such a big thing about one of their students. That was one of many important discrepancies I battled to remedy with the school last year. Very different to Year 7.education

 

Jessie started refusing to get up on time, so was late nearly every day. Homework was not being completed and she was doing the bare minimum in class. Seemingly she has no interest in her education. She was given after school detention for kicking over a garbage bin and refusing to pick up the rubbish, and seemed to get herself lunchtime detentions regularly for back chatting teachers, challenging their instruction and authority.

At the end of October of that year, after contacting her father she decided she wanted to meet him for the first time. That meeting didn’t make her feel the way she hoped it would, and she had her first two full weeks off school after he left. The rest of the year didn’t see regular school attendance, and that was when I first discussed distance education with Jessie’s psychiatrist and counsellor. education

We are currently (July) waiting to hear the outcome of an application for distance education for Jessie who is now in Year 9. It’s where we’ve ended up after nearly 6 years of very rocky schooling. It’s been very challenging, incredibly frustrating, and it’s not over yet.

I was waiting for the outcome of the hearing in week 8 of second term. By the Friday of that week I rang the school counsellor to see if they had heard anything. Jessie was ready, I’d put a lot of work in sweetening this up so she would take the opportunity. The counsellor had no idea what I was talking about. He couldn’t see anything on Jessie’s file, and he told me he’d have to have a look into it. I felt sick in the stomach, my eyes were stinging. I was so angry and upset we’d been let down yet again by the school. Jessie’s education didn’t seem something her school was particularly concerned with!

I rang Jessie’s counsellor from CYMHS when I’d calmed down. She was as unimpressed as I was, and was going to call the school. No more than 30 minutes later I had the deputy principal from school call me, asking me to come down straight away and sign the application. (I’ve learned to use my resources when needed!)

It was the last day of second term. No apology. I was just told that the counsellor who had initiated the application had left and it was still sitting in the system. The school had two counsellors. Bryan works three days , Colleen (who left), worked two days each week. I’ve dealt with both counsellors since Jessie started, and Bryan I’d met a couple of times previously in regards to Jessie’s transition into high school after having missed basically all of Year 6. Why there was no communication between them I have no idea. Jessie was meant to be on their radar.

Despite our previous dealings with Dept of Education and the local home school liaison officer, and Jessie only attending the first two Monday’s of the year (sports days), somehow we are going into week 4 of term 3 with no outcome. I  was assured that the forms would be sent in as a priority application and we would not have to wait until the usual 4 week hearing dates.

The application has now been received. The deputy principal rang me a couple of weeks ago asking me to provide a letter from my doctor stating whether or not educationhe thought I was capable of overseeing Jessie’s work. A letter had been provided by Jenni, Jessie’s counsellor, but I was told that they required more. It seemed strange as our doctor sees us for physical medical reasons,  not mental health reasons. He’s aware of Jessie’s issues as she has stormed out of his surgery, foul mouthed, after being called out on an imaginary injury a couple of years ago!

The next day the deputy rang me back to advise me I didn’t need the letter from the doctor after all. They found the letter from Jenni that provided what they needed. The whole thing has been like watching a kindergarten play where none of the kids have any idea what’s going on!

Meanwhile I’m sent a text every day in case I’ve forgotten that Jessie isn’t at school. I’m required to respond with a reason for her absence otherwise they are recorded as Unjustified.

I’m so bewildered and frustrated with the incompetence of the people who are in charge of educating our kids. And I find it even more frustrating that nobody ever apologises. I am just given excuses – and lame ones at that. It also leaves me feeling like they just don’t give a shit about Jessie. Jessie feels the same, and I’m worried that it’ll change her attitude towards the work, as it has before. She’s 14 and doesn’t get that she’s only hurting herself by rebelling in that way. It’s up to the adults to get it right.

I’d had a meeting at the school at the beginning of 2016. In attendance were Jessie’s counsellor, the school counsellor, the year advisor, and Kay, the home school liaison officer. I had dealt with Kay whilst Jessie was at primary school. She was very familiar with our situation.

educationAt the meeting, because of Jessie’s self imposed isolation and refusal to attend school, it was decided that trying to get her back there was off the table. Kay gave me info about a course for Jessie called Links to Learning. It was held locally one day per week, starting in May 2016 and running until the end of term 3. The school was also to have class work for Jessie to collect from school each Tuesday and return each Friday.

The following Tuesday morning we went in to get the schoolwork. The year advisor had assured me it would be left at the front office for collection. 45 minutes later we left with a pile of maths (her most hated subject) and a history assignment. There was no learning material, as not a single teacher had prepared anything. I couldn’t believe it. I managed to get my daughter there, which no-one expected. As I expected after the wait, I wasn’t able to get Jessie there again though. They didn’t keep their side of the agreement and for Jessie that’s a deal breaker. She can be so unforgiving! And that was the end of that.

Links to Learning was refused by Jessie as well. After missing so much of Years 4 and 5 and the majority of Year 6, Year 9 is quickly slipping by too. I continue to be told that Jessie’s really smart and will catch up. How can she catch up when she continues to miss so much?

My faith in the Department of Education is lost. I rang today, and I will continue to call and leave messages until I get a result. Education should be considered a priority for every child, no matter what their circumstances.

education

 

(Redraft of article first published on 9 August 2016)

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