Stop the botts (Abbott and his cabinet that is)

I am a patriot of Earth and if we ever make contact with aliens, of the Universe. So when I say that at the moment I am ashamed of Australia, don’t accuse me of being non-patriotic.

The Australian public (not me personally) just voted in an ultra-conservative government, that I will refer to as the ‘Abbott Government’ in this blog post. The Abbott Government has an uncompromising ideology almost entirely focused on the economy with little regard to people with lesser privilege and the natural environment that we rely upon to exist.

Sally McManus (Branch Secretary of the Australian Services Union, NSW & ACT) compiled a long list (including sources) of extraordinary decisions and broken promises (even for a politician) made by the Abbott Government since they have been appointed. The list, which is constantly updated, is called ‘Abbotts Wreckage’ and can be found here.

To give you a little taste of Abbotts Wreckage, here are the first 8 of 109 points (as of 24th February 2014):

No. 1 ‘Takes away pay rises from aged care workers’

No. 2 ‘Takes away pay rises for childcare workers’

No. 3 ‘Breaks his promise to spend his first week in office with an Aboriginal community’

No. 4 ‘Abolishes key ministerial positions of climate change and science’

No. 5 ‘Appoints only one woman into his cabinet and blames the women for his decision, saying he appoints “on merit”

No. 6 ‘Appoints himself Minister for Women’

No. 7 ‘Abolishes the Climate Commission’

No. 8 ‘Scraps the Social Inclusion Board, which had been established to guide policy on the reduction of poverty in Australia

Why 8 points? Because I don’t like No. 9 (Breaks his promise to “stop the boats”)

Of great concern to me is the increasing potential for Australia to become a country of the oppressor and the oppressed and it has already started with the ‘Stop-the-boats’ campaign. I feel sick and afraid for the asylum seekers that have arrived by boat (who the government wants us to call “illegals”) who are languishing in pitiful offshore detention centres in mandatory detention for months or years, being told they will never be settled in Australia, treated worse than prisoners with inadequate clothes, shelter, health care, food and even water. Pregnant women, children (some unaccompanied) and newborn babies are among those held in mandatory detention as well. It beggars belief.

How did this happen? An age-old recipe of the power-hungry instilling fear of an enemy and promising to protect us from them. Yes, the Abbott Government convinced the majority of Australians that asylum seekers (the most vulnerable people on the planet) were our enemy, that they would take our jobs, that they were a risk to our security and our way of life and even that they would cause traffic congestion. What is worse is that both the major parties shared the same tactic to gain popularity before the last election.

Refer here for the facts about asylum seekers in Australia as opposed to the government rhetoric.

Up until the last election my interest in politics has been very low. There was a time as an adult when I didn’t even know the name of our prime minister or the ruling party. I don’t notice things unless I really notice things and there has never been a more important time to really notice what the government is doing. Social media opened my eyes to what was happening here and I could no longer ignore politics because if I did I would be part of a silent majority that allowed unconscionable acts to occur by doing and saying nothing.

Recently many asylum seekers were attacked at one of the offshore processing centres and one of those asylum seekers died from his injuries. The immigration minister Chris Morrison, implored the public to wait until reviews were conducted before making judgements, all the while freely using victim-blaming terminology. Morrison stated “This is a tragedy, but this was a very dangerous situation where people decided to protest in a very violent way and to take themselves outside the centre and place themselves at great risk”. Then, after being corrected that the asylum seekers were not in fact outside the centre Morrison said “In a situation where transferees engage in riotous and aggressive behaviour within the centre, this will escalate the risk to those who engage in such behaviour”. The only people injured were asylum seekers so it does not make sense that the asylum seekers were the aggressors. At this stage, the only aggression asylum seekers have shown in detention is in self-harm, including among children, caused by depression as a result of prolonged detention.

So here I sit scrolling through social media links despairing at the latest actions and words of the Abbott Government realising that my time of blissful ignorance has passed and never again will I ignore politics because the cost of ignorance is too high. I can only hope that promoting awareness of the deplorable actions of our government and the public backlash will be enough to end this madness. March in March Australia.

Image obtained from the Asylum Seeker Resource Centre Facebook page

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Ever wondered WHY I am so socially awkward

Imagine being ‘lost for words’ most of the time, when conversation is expected.

Imagine speech being indecipherable among background noise.

Imagine being unable to distinguish between a smile and a grimace.

Imagine constantly being unable to recognise people without the use of context (the environment you expect to see them in, their hair cut and colour or body shape).

Imagine having a poor memory for people, places and events.

Imagine being me.

I didn’t realise for a long time that this was different from other people’s experiences because I didn’t know what it was like to be anyone else.

When I received a diagnosis of autism, I became aware that at the core of this diagnosis was social communication impairment1. There are plenty of social theories about why people with autism experience social communication impairment, often centring on impaired understanding of emotions and the ability to attribute mental states (intentions, knowledge and beliefs) to others but none of them completely explained my experience.

Then I started to read about differences in information processing (refer also to previous blog post on Autism and Sensitivity) such as pragmatic language impairment, prosopagnosia, auditory processing delays and differences in types of memory. That was when I really began to understand the extent of my differences. I will follow with a brief description of each condition and its relationship to autism.

Pragmatic language impairment is strongly associated with the social communication impairments of autism2;3. It refers to difficulties such as recognizing social cues, problems understanding and engaging in ‘small talk’ and giving conversational responses that are socially inappropriate2.

Prosopagnosia is a ‘condition in which one can correctly label objects but cannot distinguish among faces’4. There are similarities in anatomical brain differences that attribute to prosopagnosia in people with autism4. I found this personal account of autism (aspergers) and prosopagnosia that describes it well. Abnormalities in face processing (the way the brain processes information regarding faces) are commonly seen in people with autism and are likely have consequences of difficulties with identity recognition and emotion recognition4.

Auditory processing refers to the way the brain interprets sound (speech and non-speech stimuli). There is extensive evidence for atypical processing of auditory information in people with autism5. These differences include pitch perception, hypersensitivity to loudness and prosody perception5. There is also preliminary evidence for impaired processing of auditory information in background noise in people with autism with many personal accounts of this difficulty5.

Autobiographical memory comprises both personally experienced events and self-related information. Episodic autobiographical memory has been shown to be impaired in autism while other memory systems are typical6.

These were some of the clues that made me realise that I experienced each and every one of the information processing differences listed above:

  • The day I was able to recognise someone I hardly knew by the sound of their voice alone (with their back turned to me, in a quiet room where I didn’t expect to meet them) but at the same time being aware that I am regularly unable to recognize people I know well by their facial features especially in environments that I do not expect to see them.
  • Giving a happy response in a conversation until I realise too late that the person I am with is actually angry or crying.
  • Having to rely on subtitles while watching TV to ‘hear’ what the characters are saying. I love subtitles.
  • Having to constantly ask people to repeat themselves because I haven’t heard what they have said even though all my hearing tests came back normal. Permanently looking confused during conversations in crowded noisy places and often nodding my head in agreement unaware of what I am actually responding too.
  • Often forgetting to ask about key events or shared experiences in people’s lives, due to forgetting about them (either in that moment or permanently).
  • Being completely unable to think of anything appropriate to say in a conversation, even while frantically searching my brain for something relevant, resulting in many prolonged awkward silences.
  • Sometimes desperately filling awkward silences with random pieces of information that were not relevant to what was previously said.
  • Being told by others that I have been referred to as ‘odd’ or being told directly that I am odd.
  • Social anxiety +++ Can you really blame me for that?

There are so many more different things about me and there are reasons why I am different with quantifiable evidence to back it up. Trying hard (which believe me I do) and practising a lot won’t ever make me as talented as you at socialising. Memorizing and retrieving scripts such as ‘How was your weekend?’ or ‘How is your child going at school?’ can only go so far. It’s not my fault, it just is. My strengths lie elsewhere.

Imagine being able to empathise with difference everywhere, to avoid blame and to appreciate things about other people that no one else noticed.

Imagine having an amazing memory for the written word, to read words, to spell words, to pronounce words, to express how I feel in writing better than most.

Imagine being able to focus intensely on topics that interest me, allowing me to become very knowledgeable in those areas.

Imagine being me.

References:

  1. American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Arlington, VA, American Psychiatric Association, 2013.
  2. Reisinger, L.M. Cornish, K.M. Fombonne, E. Diagnostic differentiation of autism spectrum disorders and pragmatic language impairment. Journal of Autism and Developmental Disorders 2011; 41:1694-1704
  3. Gibson, J. Adams, C, Lockton, E. Green, J. Social communication disorder outside autism? A diagnostic classification approach to delineating pragmatic language impairment, high functioning autism and specific language impairment. Journal of Child Psychology and Psychiatry 2013; 54(11):1186-1197
  4. Sasson, N.J. The development of face processing in autism. Journal of Autism and Developmental Disorders 2006; 36(3):381-394
  5.  O’Connor, K. Auditory processing in autism spectrum disorder: A review. Neuroscience and Biobehavioral Reviews 2012; 36:836-854
  6. Crane, L and Goddard, L. Episodic and semantic autobiographical memory in adults with autism spectrum disorders. Journal of Autism and Developmental Disorders 2008; 38:498-506

Advocating for your child

When Damian (my youngest child) was two years old, I decided to enrol both my sons into swimming lessons. In Australia, where we have many beaches and hot summers, many pastimes revolve around water so swimming lessons are a common extracurricular activity and safety consideration.

Damian was initially terrified of swimming pools. Even after he had watched his older brother enjoying his swimming lessons for several weeks as preparation, just putting his toe in the water made him shake like a leaf. After a few weeks of encouragement, praise and playing games that he liked in the water, with people he loved and trusted (my husband and me); he was ready for swimming lessons.

In baby classes, you might notice that some swim teachers’ freely pour water over babies’ heads. The babies can’t talk so they cannot say stop. In this particular class they would blow air in their faces first as a consistent warning that they were about to be dunked. However, Damian was very verbal for his age and repeatedly pleaded in desperation “Please don’t put my head underwater, I don’t want to put my head underwater” so the swim instructors didn’t have the heart to put his head under the water.

To encourage Damian’s confidence in the water I would get into the pool with the boys after their lesson, I would play ‘pool chasey’ with them, ‘splash fights’ with them (they did most of the splashing), throw them into the air and make sure they had as much fun as possible to increase their motivation and confidence in the water to encourage them to come back the next week. They looked forward to playing with me after lessons.

I was one of the few parents who got into the pool with their children and the only mum I saw that played so enthusiastically with them whilst in there (although, I am sure there are others out there). I felt a slight tinge of embarrassment because I looked like a drowned rat and behaved like a child but I was doing it for my boys and in the end that mattered more. A couple of times other people’s children would hang around as if they wanted to join in and that is when I encouraged my boys to play with them, with less direct play input from me.

When Damian was almost three years of age they put him into the next class up, which required him to go in the water without me. There were four kids to a class and they did age-appropriate water activities. Half their lesson was spent on a platform at the deeper end of the pool. I remember he was scared of going between the platform and the edge of the pool because he couldn’t touch his feet on the bottom of the pool. However, within a few months he had grown tall enough to touch the bottom and he was pretty thrilled with that.

Strike One

Damian still hated putting his head underwater but his new instructor would dunk him under from time to time. I could see that he was upset by it and it was affecting his whole mood for the lesson. Damian had stopped verbalising that he didn’t want his head under the water (regression in communication is not uncommon with infants/toddlers with autism) and would express himself through a low-level grizzle throughout the duration of the class some days and occasionally he would refuse to join in when he was too upset. His instructor’s method for dealing with his grizzles and non-compliance was ignoring it.

Damian started trying to refuse to go to lessons and he was having nightmares about putting his head under water. It was clear I was going to have to intervene on his behalf. I wrote a letter to the swim school supervisor, which I have copied word for word (with names blanked for privacy) as follows:

Dear _____,

My sons Jeremy and Damian _____ attend swimming lessons at _____ Swimming with your team and I am very happy with _____ Swimming. Jeremy is thriving at your swim school, he loves to swim. Damian, however is having nightmares about water, constantly talks about not wanting his head under the water and does not like attending swimming lessons. As I have mentioned previously, Damian has Asperger’s Syndrome (an Autism Spectrum Disorder). Although, all children are different, Damian is more different because of his disability. This is the reason I am writing to you today.

Although, Damian has a very good vocabulary for his age and looks no different to other children, there are a couple of stand- out features that affect his experience with swimming. Damian has an intense fear /dislike of putting his head under the water. This dislike could be sensory (children with Autism often have sensory processing difficulties) and/ or psychological fear (Damian has a lot of fears and anxieties, more so than the average child). Damian also has difficulties with communication (all children with Autism have difficulties with communication, it is one of the triad of impairments constitutes the diagnosis of Autism). Because Damian has difficulties with communication he is unable to show people in the usual ways (verbally and body language) of his fear of putting his head under the water. Damian often has a blank expression on his face (doesn’t show the feelings on his face) and communicates his discomfort/ pain/ fear by general grizzling regardless of the intensity of that discomfort. It is possible that Damian tolerates putting his face in the water at some times and not others and this is likely to be completely different to putting his head under the water completely.

What I ask of _____ Swimming is that Damian’s swim instructor (_____) does not put his head under the water at anytime without first asking him specifically and obtaining his consent. I am happy for Damian to never have his head completely submerged in water. Damian needs to be asked on each occasion if the swim instructor wants to put his head under the water and not just one time for the lesson because like most children on the Autism Spectrum, Damian does not like surprises (to the extent that it makes him highly anxious, which may only be clear to those who know him very well). Putting his head under water, when he is not expecting it, would be a doubly disconcerting surprise.

My goal for Damian at swimming lessons is to be able to save himself should he ever fall into the water as a child (or adult), I do not expect stroke development or anything which requires Damian to submerge his head completely underwater. The reason I have chosen to write this letter, is because I am also on the Autism Spectrum and find it difficult to communicate my needs as Damian’s mother (especially in noisy and busy environments).

I would like to reiterate that I am very happy with _____ Swimming and all the swimming instructors including Damian’s instructor, _____. However, should _____ have any difficulty accommodating my request personally, I am happy to change instructors.

Can you please let me know if my request can be accommodated?

Thankyou for your time

Rachel _____

The swim school supervisor told me that they appreciated the letter and said to me that they had organized a staff meeting to discuss the matter and that they would take my advice. I delighted in reassuring Damian that I had both spoken to and written to the staff and that they had agreed that they would not put his head under the water anymore unless he said they could. Damian was pleased too and all the nightmares and lesson refusals stopped.

After some weeks, Damian surprised us all by putting his face in the water by himself while he thought no-one was watching and slowly built on this. In addition, Damian started saying that he wanted to be a swim teacher when he grew up.

After a couple of months, I did actually change swim teachers for Damian. I made an excuse that I needed to change the lesson time when the real reason was that I was not convinced that she was a good fit for him. It wasn’t her fault so that is why I didn’t give the real reason. There were still moments of discomfort and difficulty for Damian and the swim teacher’s way of dealing with children who were upset was to ignore the problem, which may be effective for some children but not with Damian. In addition, she never smiled and didn’t seem to be having fun, which I thought was important for Damian to keep his interest.

The swimming lesson pool was quite large compared to other pools in the area and there were several other pools for laps, therapy and water aerobics nearby. At any time there were about seven swim classes operating next to each other and children swimming in the free play area next to the classes. It was very loud due to the noises of children yelling, music playing (for the aerobics classes) and water splashing. The echo in the large auditorium in which the pools were situated was almost deafening (especially to those of us with sensitive hearing such as Damian and I).

When Damian was not involved directly in an activity (they took turns) he appeared oblivious to what was going on around him and entertained himself by jumping off the platform and back on again. The way Damian jumped up and down off the platform resembled one of those repetitive calming activities that some people with Autism often do that is called stimming.

I did a quick wordpress search to find an explanation for stimming for those readers who may not be familiar with it. I thought that this post by ‘Ask An Aspergirl’ explained it best (click here). Jumping up and down in the water is likely to have been Damian’s way of copying with the chaos around him. He certainly wasn’t doing it to be intentionally ‘naughty’ or to draw attention to himself.

More often than not, it was difficult to get Damian’s attention (most likely due to the noise), and his new swim instructor found it difficult enforcing the rule of staying on the platform. His new swim instructor probably decided it was a battle she didn’t want to take on at that stage, as they were making great progress in some areas with him particularly with back floating.

Damian’s swim instructor had been doing a great job giving him lots of verbal praise and high-fives and Damian was gaining confidence in the pool. Given Damian’s positive response to praise, she started to take it one step further by giving him rewards of certificates and fridge magnets. Unfortunately, the swim school supervisor did not appreciate her efforts.

Strike two

The swim school supervisor watched Damian in the pool one day after being told that the swim instructor wanted to give him a certificate for back floating (an activity he was previously afraid of). He stood there for quite some time watching Damian jumping on and off the platform. After the lesson he proceeded to express his disapproval to me in front of Damian and reprimanded Damian about how he should not be jumping on and off the platform.

The swim school supervisor also said that he wasn’t comfortable giving Damian a certificate because it was “rewarding bad behaviour” but begrudgingly handed it over when I reached for it. Damian had been promised the certificate and was looking forward to receiving it and I thought he deserved it for being so brave to conquer his fear of back floating; I wasn’t going to let the swim school supervisor retract it.

However, it was too little too late. Damian’s facial expression went from excitement knowing that he was going to get a certificate to a complete lack of expression and he stared into the distance away from us for a long time. I can only imagine that Damian was stunned and confused and didn’t know how to process what was being said to him. The supervisor even noticed Damian’s reaction as being strange and asked if he was OK.

I am annoyed that I didn’t advocate fully for Damian then, instead I apologized about Damian’s behaviour on the platform and said I would talk to Damian about it later (and I did). However, later when I started to consider the unfairness of the situation I started to feel upset about it. The swim school supervisor should not have said all that he did in front of Damian; he could have called me to discuss it. He also clearly had no idea how to support a child with autism (refer to my post on communication and behaviour). I chose not to complain about it hoping it was just a once off event.

Not long after that, Damian graduated to the next level of swim class, which did not involve activities on a platform. A new set of expectations were placed on him. There were fewer games and more stroke improvement drills with the teacher standing several metres away from them shouting instructions. Damian started losing interest in swimming and I started offering tokens (refer here for further information about Token Reward Systems) for just participating in the swim lesson as an extra incentive for continuing the swim lessons.

Strike three and you’re out

Damian often couldn’t hear when the swim instructor called out his name from a distance because he was distracted by all the other noises around him. The teacher had stopped giving him rewards (most likely under instructions from the swim school supervisor) and had reduced the amount of praise significantly so the only feedback Damian was getting from her was “Damian you are not listening! You need to listen!”

Eventually Damian burst out crying saying “I can’t do it!” and had a full meltdown. I took him out of the pool and cuddled him for about 20 minutes until he calmed down. He clung to me all that time, sobbing loudly.

I immediately began to search for a different swim school for Damian. I left a message for the swim instructor to call me back to attempt to talk to them about it but it was the receptionist that called me back. I actually felt that they would have been glad to ‘get rid of’ us by then so I told the receptionist not to worry about it because I would sort the problem out myself. I cancelled the swim lessons and booked in somewhere new.

It was the best decision I ever made. Damian is loving his new swim school, which is much more kid-friendly and he has full confidence in his abilities. I wish I had changed swim schools earlier to avoid those bad experiences for Damian. However every experience is a learning experience and advocating is not a perfect process (there is no perfect).

Damian was aware of the steps that I took in that process. He knew I wrote a letter for him, he knew I explained the problem and offered solutions that I gave the swim school a chance and he knew I looked for the best swim school for him when they failed to support him adequately.

My children are going into life having already being aware of the concept of advocating for their needs and the needs of others, trying different things to solve problems, the failures and successes; perhaps that’s not such a bad thing.

My stay in a psychiatric hospital

Now before you think I am confiding a deep dark secret, it is nothing of the sort. To this day, I find myself occasionally mentioning my stay in a psychiatric hospital to a friend or even acquaintance during casual conversation, usually with no warning. Why would I do that? I’m not quite sure. Maybe I find it amusing, maybe I like to shock or maybe I like to challenge preconceived beliefs about psychiatric facilities and the people who attend them. All I know is that I am definitely not ashamed or embarrassed.

My sister recommended the mother-baby unit of the private psychiatric hospital to me because she had a friend with post natal depression who found it very helpful. My family noticed that my anxiety levels were excessively high even for me.

I was able to look after all my baby (Damian) and toddler’s (Jeremy’s) needs. I fed and entertained them. I washed and dried them, their clothes and their cloth nappies but my husband did everything else in the house including feeding me and I was so sleep deprived that I cried about it. I was so anxious that I avoided leaving the house at all for the first few months after my baby was born.

It’s possible the turning point was when one of my sisters saw how hairy my legs were when she came to visit, I remember her look of horror but it only made me want to laugh. However, I recognised that it was about time I tried something different to manage my lifelong difficulties with anxiety and I saw the potential for more sleep with only Damian to take care of in hospital.

I had begged the hospital staff over the phone to admit me as soon as possible, making sure to communicate the extent of my inability to cope and sobbing loudly into the receiver. I distinctly remember a nurse asking me “Do you have any concerns about your baby’s health?” I didn’t and I answered as much but I assumed that it must have been a key question to decide if we needed psychiatric care. That was my first clue about the prejudice that many of us inpatients would be faced with.

The ward looked like any other hospital ward with a nurse’s station near the entrance and patient rooms down the sides of a long corridor interspersed with a communal kitchenette, a lounge room and a couple of small meeting rooms. When I entered the ward for the first time, I remember feeling concerned that one of the psychiatric patients from the other levels of the hospital could easily walk into the rooms and take my baby. Unfortunately, I had been unduly influenced by the media portrayals of people with mental illness, which are not very well-balanced. It makes for better ratings when the media appeals to our worst fears.

Not long afterwards, I was also feeling a little wary when I noticed my unwell-looking room neighbour mumbling to herself angrily as she entered her room but later I realised that she was talking on her mobile and had a bad case of the flu. Now I can say with certainty that she was the loveliest and most trustworthy person I have ever met.

We had a weekly schedule to follow, group meetings/ counselling sessions with the nurses and consultants and meetings with our individual psychiatrists. My psychiatrist prescribed me a low dose of a common anxiety medication and for the first time in my life I felt a blissful calm feeling.

I attended my first group meeting dressed in tracksuit pants and slippers and to my embarrassment I noticed that all the other mothers were well dressed. I didn’t make that mistake again. It seems that even though we were unwell enough to be in hospital we still had to keep up appearances, which was an annoyance to me. No wonder I hadn’t wanted to leave the house. I had very little room for extra effort.

During my first break (when Damian was fast asleep), I ventured into the empty communal lounge and took out my bright red ukulele and some sheet music that I had printed off the internet. I brought it with me intending to learn how to use it while Damian slept. I took a few strums and realised that it was going to be more difficult than I thought to learn an instrument. I also decided that it was probably an abnormal thing to do anyway (even in a psychiatric hospital or especially in a psychiatric hospital, I’m not sure which), so I didn’t bother picking it up again after that. Instead I just read the women’s magazines lying around the place but it was still a luxury.

One of the nurses tried to analyse me after I had divulged half my life story and failed dismally by interrupting and trying to complete my sentences with incorrect assumptions. She was the nurse everyone loved because she was so confident and funny, but she never took to me. It seemed that even in a psychiatric ward I was going to be the most different and least popular person. My interpretations of picture cards and discussions during group sessions often differed to the majority view as well. I didn’t know at that time that I was autistic.

One thing I did well was entertain my baby; I had plenty of practice entertaining my first-born because Jeremy was only ever content as a baby when I entertained him with songs, books, dancing, games and new experiences. It was nice to be given compliments about my interactions with my baby. At least I seemed to be doing something right, even though it was different yet again.

I had trouble sleeping in the ward because of the constant noise, my toilet leaked constantly, the cot rattled, babies cried and to top it all off it was Occupational Health and Safety protocol for the nursing staff to come into your room and shine a torch in your face every two hours at night-time. I protested and complained about the process but none of the other patients seemed to care and the nursing staff just nodded and shook their heads about me behind closed doors. Don’t they know that uninterrupted sleep is important for good mental health?

I started talking about wanting to leave because I was getting less sleep than I had at home, I even resorted to sleeping pills, and my mum and husband weren’t coping very well with Jeremy’s behaviour and sleep patterns. It was then that I found out that I wasn’t allowed to leave until the psychiatrist determined my mental health to be much improved. But what happens when the hospital is bad for your mental health? That was a shock, after all I had entered voluntarily and I didn’t have any suicidal thoughts. Where were my rights? I wasn’t even allowed to go for a walk outside without the psychiatrist signing off with an acceptable date and time, if it was acceptable at all. Didn’t they know that exercise is good for mental health?

The nurses always thought they knew best with regard to our babies. One day, towards the end of my stay, they tried to verbally bully us into waking our babies up one day to go to a supervised outing at the coffee shop across the road but one of the mum’s was more assertive (once they got her medication right) and she told them in no uncertain terms that she was not going to disturb her baby’s sleep for it. Although I wouldn’t have been brave enough to defy their instructions alone, with her beside me there was safety in numbers and so I also refused to wake my baby up to attend. I felt empowered but I’m sure they recorded our non-compliance in our medical histories.

One of the nurses had dared to say to a couple of us that she didn’t believe in reflux and that she believed that it was just a sign of anxiety in the mothers. I told her in a firm voice that was not true and that Gastro-oesophageal Reflux Disease (GORD) was a medically accepted diagnosis, one which my toddler had until he was 18 months of age (facts are something I feel more comfortable asserting myself with). The nurses would try to counsel us out of our concerns about our babies but I believe to this day that the mothers with concerns about their baby’s health were probably very perceptive and would later find those concerns to be validated. Both my sons were later diagnosed with autism.

Ironically, an insignificant event worked in my favour for early release. I had always insisted on carrying a baby monitor around with me so that I could attend to Damian when he woke from his naps. The nursing staff didn’t like baby monitors because they believed it was a sign of excessive anxiety and they said that they would let me know when he woke. But my babies never screamed like the other babies did, they grunted. Their vocalisations were different (autism-related). I knew that they wouldn’t hear Damian when he awoke and that he would be very distressed by the time they attended to him. It was the day I forgot to take my baby monitor to my psychiatrist appointment that the psychiatrist was satisfied enough to say that I was ready to be discharged (because I had forgotten the baby monitor) and sure enough when I got back to the ward there were no nurses at the station and my baby was screaming, no doubt having been awake for a long time unattended.

I did find several things about my stay to be valuable for my mental health, even though I wish I had of learned them through a different process (online preferably):

  • The right medication for anxiety and depression can be really helpful. Other patients’ experiences also showed me that the wrong medication can make things a lot worse
  • Having time alone without children, such as 30 minutes a day can be very beneficial
  • Accepting that even with treatment you will experience anxiety from time to time (and not being afraid of it) was also helpful for me
  • Cloth nappies are not for everyone
  • and last but not least, there should be no place for ignorance in healthcare institutions.

Mental health helpline contact details follow:

Australia: www.aifs.gov.au/cfca/pubs/factsheets/a143428/index.html

US: www.get.gg/helplinesUS.htm

UK: www.get.gg/helplines.htm