The Other Side of the Coin

There are always two sides to every story. It has always fascinated me how a particular narrative can change so vastly depending on one’s perspective, personality and life experiences. Our family journey navigating ASD is no different. My husband’s approach to diagnosis and ongoing issues is often extremely pragmatic and somewhat clinical. Some might even call it typically male. Over the years we continue to learn and try and accept each other’s differing approach, whilst recognising that our joint cooperation is essential navigating all our challenges. 

On a number of occasions I have spoken to friends who have had children diagnosed with ASD and a common theme was always the differing ways in which their partners were coming to terms with the situation. Some refused to talk about it, some refused to accept it as a problem, others would not engage in therapies. When I vaguely suggested to my husband that it would be lovely to have a blog post written from his point of view, I fully expected him to say no. To my surprise he said he’d have a think about it and he would probably do it at some time when he was ready. Several months later he said he thought he was ready to write something, and so here is his story.

I remember my wife coming back from mothers' group meetings often disappointed with the experience. She would relate how our first born wouldn’t want to play with any of the other kids, didn’t say much to anyone, and generally kept to himself. When he started to go to day care it was a similar situation. He never disturbed anyone but equally didn’t engage with anyone else either. He was never in the newsletter photos because he wasn’t often doing activities with the group. He was happy playing by himself. That was alright with me because I could relate. I like my personal space. I’m anti-social in crowds. I keep to myself. No big deal. 

In my head, his slow progress with fine motor and gross motor skills was counterbalanced by his ability to teach himself to read, his perfect pitch, and his memory recall (at least of things he wanted to remember!). He wasn’t going to be an athlete but that was alright as well. Eventually he would learn the benefits of physical activity. 

It may have seemed at the time that I was a little un-emotional and detached. That certainly wasn’t so. I was getting frustrated I couldn’t use my rational brain to reach my son’s rational brain. I struggled with and continue to struggle with the fact that we speak a different language. 

When it became more obvious to my wife that some things weren’t quite right, some things weren’t getting better, and that certain patterns began to persist she pushed for his assessment……. I followed her lead. I’ve learned to accept over the years that there is something vaguely resembling women’s intuition, as illogical as that may be. Once we had a diagnosis of ASD and had met good professionals in the field, we had more clarity in what we had to work on with our son, and we were encouraged that our own educated attempts to help him were on the right path. As each period of time passed, we would encounter a new challenge, or a new manifestation of a trait or behaviour, and we would work on that issue or seek help to address it. We both embraced it as a kind of challenge. It was never a case of trying to hide or cover for any of his struggles. 

Still, I never saw the process we went through as a need to find a diagnosis – although that certainly helps when dealing with the healthcare system. I saw each stage as an opportunity to gain more insight. I needed more tools and strategies and seeking help was for that purpose. It didn’t matter to me the label he was given. It mattered that I could find a way to better prepare him for his now and his future, for when he was on his own. In that sense it wasn’t a process for me to get emotional about. It was matter of fact. It needed to be done. Get it done. So…… maybe I was a little unemotional. 

One insight that became clear is to me is how differently we all respond to adversity. And how strong an influence those differences might have on outcomes. Reflecting on our own dynamic, my wife would actively seek out help when confronted with a problem. She researches (sometimes with Dr Google) and gathers as much information as possible and generally needs to act immediately. Particularly when it comes to our children, she often thinks the worst but not necessarily hope for the best. Much to her frustration, I tend to ruminate and allow time for thoughts and ideas to form. I take time to assess the options and weigh up the appropriate course of action. No doubt I feel my method usually lends to 

a more measured response (if I say so myself). I would say she acts too hastily while she wonders how many times I’ve missed the boat (on a side note…. I did manage to get on the right boat all those years ago). 

What we have been through is nowhere near as challenging as what so many others have had to deal with in their lives. We are extremely fortunate in so many ways and count ourselves exceedingly lucky to have the support we have around us. But like everyone we also have our hurdles to encounter. Our son’s ASD is just one of them. We definitely do things differently. We argue plenty. We question any real method in each other’s madness. Nevertheless, I think it is an alignment of purpose that stops these disparities from derailing us. That’s what helps us find common ground. I think I’m fortunate that I am with someone who shares the same desires for ourselves and for our children. Not just whether they will be smart or play Bach or can tackle front on. But the desire to be good grounded human beings, to live a full and engaged life. We value family. We value our time with our children, and our time without them(!). Most of all we value what each of us brings to the relationship. We will work it out…... whatever comes.

Myanmar

Shwedagon Pagoda

One of the reasons I was always interested in doing medicine as I was growing up was because I had this idealistic concept that I wanted to be involved in some kind of altruistic endeavour. I never believed I would save the world but I was always brought up with an acute awareness of how lucky I was and wanted to be able to contribute in some way back to society.

As a medical student, I remember thinking how incredibly courageous some of my friends were when they went and did interesting electives in developing countries. One of my friends went to Nepal, and some of the surgical situations she had to assist in were things we would have never seen at home and this filled me with terror. In my head, I was just a medical student and really had no idea about anything. I was the kind of intern who freaked out on day 1 about how much oral potassium I could safely prescribe. I convinced myself that there was no way I would be good enough as I just didn’t feel like I had knowledge or the skills to be useful. 

I kept expecting this sense of inadequacy to magically dissipate at different times throughout my career.  First, when I actually graduated from medical school, then after completing my internship, then after completing my residency. When this feeling was still there after starting my anaesthesia training I reconciled myself to the fact that maybe it would only be after I finished all my training and became a consultant before I would attain this elusive sense of adequacy. 

I am sure you know how this story ends. When I did finally finish my anaesthetic training, 6 years and 2 sets of exams later, I still felt inadequate. I didn’t feel like I had the self-assurance that many of my colleagues possessed and even though I was confident in my own abilities, working in an environment where there was equipment I was not familiar with, diseases I knew little about and a distinct shortage of medication and resources that I was so used to, petrified me. When I ran out of legitimate excuses like pregnancy, breast feeding and new born mothering, I knew I had to bite the bullet and do something otherwise I would never do it.

When the opportunity came up to go to Myanmar with a plastic surgery team in association with Interplast in 2014, I knew I had to take it. I left with a team of 3 nurses, 3 plastic surgeons and another anaesthetist for what was truly an eye-opening experience. The team has been visiting since 2001 and the program has evolved over the years to address the shortage of trained local plastic surgeons. Interplast’s main role in association with the University of Medicine 1, has been to establish and deliver the country’s first local postgraduate training program in reconstructive plastic surgery. 3 times a year these mentoring / training visits occur to support local trainees with the intention to make ourselves redundant in the near future.

In writing this particular blog entry, I have had to take myself back to my very first trip to relive the emotions of seeing some of these things for the first time. It is really difficult to capture all my thoughts and feelings about these trips, but I hope to give you a  little glimpse into what it has been like.

 Although I had been somewhat prepared with regards to what resources were available, the reality of the disparities between the health system in Australia and in Myanmar were quite confronting. Myanmar has a population of over 53 million people. It has approximately 250 anaesthetists for the entire country as compared to Australia that has over 4000 anaesthetists for a population of 24 million. Access to adequate healthcare is particularly difficult for those from rural communities, and basic health education in some isolated areas is still scarce.

Yangon General Hospital is a strikingly beautiful colonial style building built in the early 1900s. It has a whopping 2000 beds and caters for a range of surgical/medical specialities. Located opposite this beautiful but run-down hospital, (across a one way street of about 5 lanes), is a small white dilapidated 3 storey building which is the home of the department of Plastics, Maxillofacial & Oral Surgery.On the outside of this hospital, there is a hive of activity with people setting up stores selling food, betel nuts, (ironically something that causes oral cancers!) and general goods that might be necessary for hospital patients including dressings, catheters, blankets and cushions. There are often stray dogs loitering around the hospital grounds and often long lines of patients waiting to be seen in various clinics.

Yangon General Hospital

Nurses are scarce, particularly at night time and families are responsible for most of the nursing care of patients. This includes jobs such as personal hygiene, emptying catheter bags, buying prescribed medicine, and even recording fluid balance. There is usually one dedicated family member selected to do this. I remember a particularly diligent wife who used a 10ml syringe to carefully measure out urine she emptied from a 2 litre catheter bag, and despite us telling her that an approximation was adequate, she still documented every millilitre of urine on the chart. 

Power outages mid surgery are common and I soon became accustomed to taking out my iphone light in the middle of an operation.  Having a back-up plan with regards to my anaesthetic if the backup generator failed or if the battery on my anaesthetic machine ran out became vital. 

What I was not prepared for was how much I would gain from the experience both professionally and personally. Professionally, I have definitely learnt to be a lot more flexible. I am much more aware and conscious of using resources carefully. Here in Australia much of our equipment is one time use only with much packaging and we are almost flippant the way we use disposables. This not only has cost issues but environmental ones. I have learnt to be much more careful about the way I use even simple things like syringes.

Available medication in the hospital environment is dependent on what happens to be cheaper at that particular time. As a more junior anaesthetist, sometimes I feel the way we are trained can make us a little rigid in our approach to clinical scenarios and I’ve definitely learnt to become a bit more adaptable in different environments. I’ve had to use whatever is available and just try to make it work. It is also not uncommon for a single vial of medication to be divided into a few aliquots to avoid wastage. Post-operatively patients are expected to pay for many of their medications and consumables so it is important to take these factors into account when prescribing medications for the ward. Patients even have to pay for their own anaesthetic gas, something I have never ever had to even think about!

In writing this entry, I’ve realised that over my past four trips to Myanmar, I have become less surprised by what I see and certainly less frightened. More importantly, we are slowly seeing amazing changes in the hospital where we work. The surgical trainees are far less reliant on our surgeons for guidance. They are operating independently doing bigger and more complicated cases. Personally, I have developed close relationships with a few of the local anaesthetists and surgeons which has been wonderful. On some level, I feel guilty because what I get from each of these trips far outweighs what I am able to give back. Each time we return, there are new developments and improvements yet the familiarity is somewhat comforting. It will be sad in a sense when we do achieve our now truly tangible goal of becoming dispensible.

Evolving Perspectives

It is a cliché, but becoming a parent has definitely changed my perspective on many aspects of life. The many challenges you face raising irrational tempermental children, coupled with having a type A personality creates a sense of constant angst that needs to be reigned in. My desire for control has certainly been moderated.  Honestly, who can argue with a 3 year old’s hysterical tantrums?

This need for control has also been tempered by going through the whole ASD diagnosis. There is so little I can control and so every time we have a problem a little more sorted we await the next challenge to present itself. One the other hand though, I feel that I have become a much more empathic person and see the world in many more shades of grey than I used to. This in turn I hope has made me more compassionate in my professional life.

Not long ago, I had a young adult patient who was severely intellectually handicapped requiring a general anaesthetic for a surgical procedure. He had been an emergency add on case so had been brought into the pre- anaesthetic bay in somewhat of a hurry. I distinctly remember seeing a young man with ruffled unwieldly hair, curled up in his sterile hospital bed looking confused and anxiously gripping two square pieces of duplo. His mother came in close behind him. She must have been in her sixties and was dressed in black slacks and a plain jersey top covered by a white short sleeve hospital gown. Her hair was pulled into a loose bun and she was gripping a black handbag with both hands. She looked absolutely exhausted and once the hospital trolley was parked she rushed to her son’s side to hold his hand.

After some brief introductions she explained to me that her son was mostly bed bound, he could respond to her commands, and could understand most things but was not verbal and sometimes if frustrated could be quite violent. She was at lengths to explain how he needed turning often so as to avoid pressure sores, however when doing so you had to explain to him what you were about to do. It soon transpired that she and her elderly husband were the primary carers for him and she had had little respite in the past 20 years. I asked her what things would calm her son down if anxious and she said it was generally her presence and holding onto his precious pieces of duplo.

During our conversation, I found myself completely overcome with an overwhelming sense of sadness for her and her family. Although it was nothing that I had experienced, her daily struggles as a mother felt so tangible to me. I could imagine that her day revolved around taking care of him and worrying about his future especially now she was growing older. I started to talk to her son and gently explained the process of what was about to happen. I could see him grip his duplo tighter, and told him his mum would be in with him until he went to sleep and he seemed to relax a little. The relief of mum’s face when I told her she could be with her son until he fell asleep was palpable. I watched this devoted and dedicated woman stroke her son’s hand whilst I put a cannula into him and then comfort him as he drifted off to sleep.

I promised her as she was escorted out the operating room that I would be with her son the entire operation and that I would take care of him. I felt so privileged that she had entrusted me with her precious and extremely loved son. I made her promise to go and have a coffee, lunch and have a break whilst the operation was underway. She seemed so grateful to be given permission to provide herself with some basic self-care that I almost cried in front of her. I wondered, who looks after her? Did she have anyone who made sure that she was ok?  Who will love her son in the selfless way she does if anything happens to her or her husband?

It was one of many experiences that have made me so conscious of my own situation and thankful/grateful for all that I have. At that moment, I made a promise to myself to always try and remember this feeling, particularly when dealing with difficult patients and their families.

Sensory Concert Coming to Melbourne!

                                                                                                      
                                                                                                 Grace Kim (David Hill, Deep Hill Media)
                                                                                                   

SENSORY CONCERT COMING TO MELBOURNE!

The benefits of music education have been extensively researched. Some of these benefits include

- improved language

- increased emotional resilience

- increased attention span and concentration

- increased empathy

A very interesting article that I read provides an over view of the neuroscience behind the benefits of music was published by the Royal Conservatory of Music in Canada can be found here https://www.rcmusic.com/sites/default/files/files/RCM_MusicEducationBenefits.pdf

For children on the autistic spectrum, music education can also be particularly therapeutic. Last year an old friend of mine Grace Kim, who is a professional musician living in the Blue Mountains developed and produced a series of ‘Sensory Concerts’, particularly designed for children/adults with sensory needs. It seemed like such a wonderful initiative that I have been eager to bring the concept to Melbourne and Grace has kindly agreed to assist with this project. Our plan is to run two concerts in Melbourne on July 15th. (More details to follow.)

I recently asked Grace some questions to explain the project.

1) What is a sensory concert and what is the philosophy behind them?

Sensory Concerts is a series of high quality classical music concerts for families with sensory needs. People with sensory needs are easily overwhelmed by crowds, noise, light, smell, and touch. Everyone has some sort of sensitivity to a degree - some people can’t stand others chewing loudly, or their eyes hurt when it’s too bright. For most people, it doesn’t impact their everyday functioning. But for some, they feel everything so intensely and find it too overwhelming - so much so that they cannot attend public events such as concerts. Many people on the Autism spectrum, for instance, experience this. Young children are especially sensitive to their surroundings, and tend to react in certain ways (eg. moving, making noise) to cope. That’s why families with children tend to shy away from traditional concerts in fear of disrupting others. We all know that music is one of the best things for the brain development, and these families miss out on the crucial time when their brain are developing.  In many cases, with their heightened sensory perception, they may even appreciate the experience more intensely than their peers, if given the right environment! 

2) How is it different from a normal classical music concert?

Sensory Concerts differs from the traditional concert expectations, a more relaxed atmosphere, giving the audience opportunities to self regulate - with small numbers, various seating options, retreat space, and on-site Occupational Therapist/ Psychologist support.

3) What was your motivation behind starting these concerts?

As a classical pianist, I have performed around the world, for various people of all ages culture. All my performing life, I have derived great joy from sharing the wonders of classical music with as many people as possible.  

I’m also a mother of two young children, one of whom has Asperger’s Syndrome, I am a passionate advocate for high quality music education and am constantly creating and presenting family-friendly performances for diverse audiences. I wanted to create something I could take my own children to, without compromising on the quality.

4) What sort of feedback have you had from families who have attended your concerts?

We’ve had such positive response from those who attended, including our Federal MP Susan Templeman. This project has also been endorsed by Tony Attwood, the leading expert in Asperger’s Syndrome. Below are some of their testimonials.

From Susan Templeman MP:

"I’m the daughter of a high school music teacher who also did a lot of work in the disability

sector, so I strongly believe that everyone deserves access to quality classical music.

It’s hard enough keeping young children without special needs settled during

performances, so what was really impressive about the concert was to see an environment

where parents were able to relax and their children were able to respond to the music in

their own way. It was an inclusive environment, with beautiful violin, cello and piano performances. I would certainly love to see more of this happen in the Mountains.”

From Dr. Tony Attwood, a leading expert in Aspergers Syndrome:

"Your Sensory Concert project is an excellent idea and may be extraordinarily well

received by those with an Autism Spectrum Disorder. Certainly, I would like to endorse

your project as I think it is based on sound clinical experience and new research in this

area, in terms of sensory sensitivity and sensory overload."

From the general public:

Absolutely fantastic! Thank you for organising this for our special kids and sharing your

considerable talents! The calibre if the performance was well noted thank you. The

sensory seating was also wonderful for our kids

"Thank you for putting on such an enjoyable concert for not only the little ones, but the

adults as well. It was fantastic having the crash mats all around, and a relaxing non judgemental

atmosphere where our kids could just be themselves and enjoy it in their own

way. I also absolutely enjoyed it myself, was just magical to listen to. Will definitely be there for

the next one.”

"I am so grateful for this experience I normally wouldn't take my kids to a classical concert

for the fear of them being disruptive. But the music was so beautiful that they were

amazing and transfixed by the music. It was absolutely beautiful, thank you.”

5) Who are the musicians that play at these concerts?

I have a network of wonderful musician friends and colleagues who perform all around the world. So far, we’ve had Rebecca Chan (Assistant Concertmaster of London Philharmonia Orchestra), Elizabeth Neville (cellist, Sydney Symphony Orchestra), Matthew Ockenden (Associate Principal bassoon, Opera Australia Orchestra), Teije Hylkema (Principal Cellist, Opera Australia Orchestra), and this upcoming concert in April will feature flautist Lisa Osmailowski (currently playing with Sydney Symphony), Melbourne violinist Erica Kennedy (Orchestra Victoria) and myself, at the piano. In Melbourne we will have violinist Yi Wang (Opera Victoria) joining us. These musicians all share the values of this project and keen to contribute their talent and time. You normally have to pay a lot of money to see them at the concert halls.

6) Are these concerts only for children with sensory issues? 

Though the concerts are designed with sensory/special needs in mind, all walks of life: young and old, neurodiverse, physically or intellectually challenged, are welcome to access and enjoy world class live performances! We’ve seen such diversity amongst our audiences, and is very heartening to see how they experience and respond to our concerts.


In the next few weeks I will be holding a raffle fundraiser to try and raise funds to get the first sensory concert in Melbourne underway. More details will follow on both this blog and Facebook page.