Social Inclusion - A Parent's Wish This Christmas

As a parent, nothing hurts more than watching your child/children suffering. Social exclusion is one of the most painful situations to both witness and experience. This is sadly such a common narrative for those with special needs particularly in children with ASD who are constantly struggling to read and interpret social cues and already find it difficult to fit in with their peers.

We have been so very lucky in our experiences so far. J has such a nurturing class whom he has been with since kindergarden and I am beyond grateful for his dear and accepting friends and their warm loving families. Many others however are not so lucky. Children can be very unkind and cruel in their treatment of other children who don’t fit their social norms. I firmly believe it is up to us as parents to teach our children the importance of valuing all members of society and the fundamental right for social inclusion.

Recently, a fellow medical mum wrote a letter about her son’s distressing experience and I think it perfectly expresses her anguish and why we need to be having these conversations with our families. I am sure there are many of you who will relate to this story and Debra has kindly allowed me to share this important letter in my blog. My heartfelt thanks to you Debra, and I hope the new year brings you and your son much more kindness and inclusivity.

A Call for Families to Embrace Social Inclusion this Christmas.

A look of sadness and confusion washed over my eight year old son's face as he recounted the story to me yesterday.  He had just come back from the local shopping centre where he had encountered the majority of his class celebrating another birthday party, but as usual he had not been invited.

"I just don't understand mum" he said his eyes welling up with tears "*Blake is one of my best friends."

I struggle to explain it to him.  You see the problem is not with the kids, it's with the parents.

My son has autism.  In prep he struggled with emotional regulation - sadly for all concerned he had several violet outbursts - but that was more than two years ago.  The children have long since forgiven him, the parents not so much.

In his small school, my son continues to be excluded from everything from play dates to sporting teams to social gatherings.  Each year he invites twenty children (the whole class) to his party, and each year he is lucky if he receives one or two invitations in return.

This is far from an isolated problem.  I was speaking about this with the mother of another special needs child at the school.  She said "Oh, I know, *Theo is the pariah of our year".

It's not just autism, children face exclusion for many reasons - the new kid, the physically disabled kid, the overweight kid...

There are strong links between social isolation (particularly in childhood) and poor mental health.  Surely it's up to parents and schools to teach inclusion, not to perpetuate social isolation?

In out household you can have a tiny party with a handful of best friends, or you can invite the entire class.  You can't invite nineteen children out of twenty, even if you "hate" someone.

Social exclusion is recognized as a form of bullying.  Not only that, there is evidence that social inclusion benefits everyone.  Researchers won a "nobel prize" for economics by proving that organisational diversity promotes business success.  It makes sense.  If you surround yourself with people who are exactly like you, you will never benefit from innovative ideas.

The list of famous people who struggled socially and did not fit in to a conventional box is endless including Albert Einstein and more recently Bill Gates, Mark Zukerberg,  Steve Jobs...

Some people set out to be exclusive, to dominate the social order, others are just passive enablers.  They are happy to go along with the crowd so long as it's not their child who is being excluded.

So, what is the answer?  Can I challenge you to be more inclusive in 2020?  Arranged a play date with a child who doesn't seem to have many friends, invite the whole class to your child's party - yes, even the "weird" child.  It might be the only invitation they get all year, and their parents will be very greatful.

My son himself came up with a beautiful example of what inclusion looks like.  He was telling me how the boys at school had formed a club.  I thought "Oh no, I know where this is heading" but the story took a very surprising turn.  He had been invited to join the club, but he had turned them down.  He said "mum, I don't want to be part of their club if my other friends can't join."

If you know the same child is consistently being excluded, perhaps you could quietly ask "Is everyone invited?" If the answer is no, if one child is constantly the one child excluded, perhaps you could politely decline the invitation? 

As for us, we will not be returning to the same school next year.  We are embarking on a fresh start.  We approach this new school with hope for a different experience and fear of history repeating itself.  Ultimately for my child's sake we have to try something different.  Surely every child deserves the chance to belong?

Self Care - A Necessary Indulgence

Last year I celebrated a big birthday….. I turned the big 4 0 ! Two of my oldest friends whom I have known since I was 12, also celebrated their 40^th. For a long time in the lead up to this event we all discussed various ways we could celebrate this milestone together. We all have children and lead busy working lives so we decided what better way to celebrate than to go on a week long trip together sans husbands / children. Thus began a long and exciting search for an appropriate destination that would have the right amount of R and R, be affordable and yet not too far away as one of us was in New Zealand, another in Sydney and me in Melbourne. 

We ended up booking close to a year in advance but finally settled on a womens’ only retreat in Caangu called Escape Haven which recently was voted the best wellness retreat in the world at the ‘World Luxury Hotel’ awards. We impatiently awaited the much anticipated holiday, even starting a WhatsApp group called Bali countdown, and finally last week the big day arrived! We were certainly not disappointed, and we have just returned from one of the most nurturing and nourishing experiences that we could have ever imagined. 

I thought I’d write two separate posts on my Escape Haven experience, this first one on the practicalities of the actual retreat and the next one on some of the self care aims I have taken away from the experience.

Escape Haven is the brain child of New Zealander Janine Hall. Her concept was beautiful . She wanted to create a place where women could ‘step outside their busy lives, put down the labels, the roles, the masks, the multi-tasking that as women, we are so good at doing . And just be.’

Escape Haven in Canggu is located in a hip, surfer and yogi beach town of Echo Beach …. A bit like a Balinese Byron Bay. It’s quite a diachotomy to see the tranquil rice fields laced with hippy yoga shops and then vegan/vegetarian specialty restaurants.

When we stepped into the retreat and were greeted by our retreat leaders, they made it clear that this was meant to be a week where the emphasis was on self care. We were instructed to feel no guilt if we didn’t want to attend any activity, equally we were encouraged to try as many things as we felt comfortable doing. We each had a meeting with our retreat leader to discuss our aims for the week, what we hoped to get out of the retreat and most importantly to make sure we booked in all our spa treatments. They went to great lengths to ensure we were happy with the weeks timetable. With a maximum of 14 guests per retreat and over 40 staff, they are really able to individualise everyone’s week and ensure a guest satisfaction in a way that is impossible to do at larger resorts.

EH have 4 main packages that you can choose from, a surf/yoga program, a yoga program, a fitness program and an aruveyda healing treatment program. All programs are very flexible and can be tailored to your needs and include unlimited spa treatments (YES I SAID UNLIMITED SPA TREATMENTS!!!)  and also a daily yoga session. When I told my friends I was keen to do the surf package they laughed at me. For a start none of us had ever surfed in our lives, secondly I was/am the most unfit of the three of us and this would definitely not be a ‘relaxing’ endeavour. I was convinced however, that this was the year for us to try. If we didn’t give it a go now then we would never do it. We also reasoned that if we really didn’t like it we could just swap to the yoga program. 

The main retreat in Canguu offers 5 one bedroom villas, a two bed room pool villa, a 3 bed room pool villa, and another 3 bed room pool villa which is about a 10 min walk away from the main retreat. We stayed at this slightly off site villa which was beautiful. 

We arrived a day before the start of the retreat and were able to stay an extra night on a bnb basis. Some of the guests from the previous week's retreat were still leaving when we arrived but we were greeted by the ever smiling face of one of the lovely retreat staff Kadek. We were presented with a cool welcome drink and a beautiful frangipani necklace. Kadek drove us down to our villa in a buggy and showed each of us to our rooms. He, and all the staff for that matter make such a point of knowing every guest’s name, you feel at home straight away and it really is amazing how they do it week after week. Kadek knew we would be tired after our journeys and promptly brought us some takeaway menus and arranged for our dinners to be delivered to the villa.

Each bedroom was beautifully appointed and we each had an outdoor shower/bath and toilet. I personally am not so taken by the whole outdoor bathroom concept …… the thought of mosquitos coming to bite me while I was on the toilet..not so pleasant 😂….. but I’ll agree it does look stunning.

In our villa we had our own living room, kitchen (not that we used this at all) and pool which was also really lovely. We each received our own compendiums with information about what to expect at the retreat, our individual timetables with spa treatment times and a list of all the different treatments on offer. There was also information about the local area and we soon realised that there were also many local shops to explore and wondered where we would fit in time to do this.

Since we were doing the surf program we had an early start every day, beginning with an amazing breakfast served at 6.30am before we left at 7am. We were served fresh mango or banana pancakes together with a fruit smoothie bowl to ensure we had plenty of energy for our adventure. Having never surfed before I was somewhat nervous about my ability to get through the week. Although it was something I wanted to do, I carried a heavy load of self doubt and angst to the first lesson. One of my aims of the trip had been to do something outside comfort zone and this was certainly one of those things. 

On the first day our wonderfully supportive and patient instructors explained to us the basic concept of how we would be able to get up on a board. We were given quite big long boards that made the whole process easier, but having said that it was still a process to work out how I would get from a lying down position to ‘popping’ up into standing. By shear luck I managed to get up standing in a rather frumpy fashion on day 1, but to be honest I hadn’t really grappled with where my body should be in space at any given time. My instructors kept telling me to 'relax , relax, relax,' so I’d lie on my board, take big deep yogic breaths and try and just be. All of a sudden, whilst I was trying to find this ‘zen’ they’d  push me out on a wave and start yelling ‘Go go go go go!’. In a fit of panic I would suddenly forget anything I had been told and hurtle myself up into an upright position. Needless to say I kept ending up off my board and into the water! 

                         

 By the 2^nd day, I had begun to panic and midway through the lesson my negative self started to talk to me. 'I wasn’t having fun. What was I doing? Everyone else was managing it but I was not. The best thing to do would be to quit and stop this nonsense.' I’m ashamed to admit I did have a moment where I nearly cried. I didn’t like to feel like I had failed but equally I felt like I was meant to be on holidays so why be miserable?. I kept trying to remember why I had wanted to do it in the first place..…. I wanted to push myself to attempt something outside my comfort zone. I started to just try and enjoy being out there on the water. Putu, one of the instructors came up to me and said ‘Just breathe and have fun.’ Somehow it triggered a more positive thought process and I decided to try and slow down and just do what I could do. I started to move much more slowly and suddenly I realised you didn’t have to jump up with one quick move. Before I knew it, I was consistently standing and starting to catch some waves! This was one of those moments that highlighted again to me the power of our own mind games. In the end all three of us managed to surf.

                                                         

    

The rest of the week’s surfing lessons were much more fun because somehow I had overcome that mental barrier of ‘I can’t’ to ‘I’ll just have fun and do what I can do’. I stopped putting pressure on myself to ‘achieve’ and just tried to enjoy every moment for what it was. 

On the third day we were taken out by boat to a place called Sanur, where we did reef surfing which was pretty special. The current was really strong and I spent most of my energy trying not to go backwards.

Noah 

Thankfully, one of our instructors Noah, (who I think looks like what I would imagine a caucasian Jesus to look like) came to my rescue several times and hauled me back out to sea. The shift division team (the surfing instructors) were such genuinely lovely and patient people who believed in all of us and encouraged us endlessly. They really made the experience incredible. Each day after our surfing we were treated to a fresh coconut drink and some snacks prepared by the retreat whilst we sat on the beach and just took everything in.

 On the drive back, Noah would pull out a laptop and show us all the photos taken by Janu, the incredible photographer who sat ashore each morning with his massive long lens taking photos of all of us. He would give us suggestions on how we could do things better and it really was great to be able to see our improvement over the 5 days. At the end of the week we were even given a USB with all these photos so we had proof to show our loved ones!

Each day we would arrive back to retreat in time for a beautiful freshly prepared healthy and delicious lunch. We’d share stories with the other guests who were doing other programs about their morning and it was genuinely a lovely and relaxing atmosphere. 

One of the highlights of the retreat is the unlimited spa treatments. We were each allocated a 90 min time slot per day where we could choose to have whatever treatment we desired. They ranged from Balinese massages to reflexology to facials to body treatments. You could add more treatments if your timetable allowed and the therapists were all excellent. One of my favourite treatments was the crème bath where you head/hair/shoulders/neck was continually massaged using a thick moisturising crème, it felt so nurturing and calming. My only regret was that there was not enough time for more!

The food on the retreat was wholesome, fresh and healthy, yet extremely tasty. You never felt hungry and it was a reminder again about how to achieve a sustainable healthy eating lifestyle. Each meal we were treated to something different and the variety was exceptional. My sugar and processed food intake was nearly negligent during the week and I could certainly feel the benefits of that. At the end of the week we were all emailed the recipes for us to try at home. As my friends and I were celebrating a birthday the staff even made a beautiful almond chocolate cake for the group to share which was so thoughtful and much appreciated.

                

Another highlight of the week was the so called ‘Indulge and Ignite’ day. This was a day in the middle of the week where you could choose a special outing/activity. The choices included a Thai cooking class / silver jewellery making /eco cycling tour in Ubud or a day at a beach club in Uluwatu . This day gives you the opportunity to do something a little bit different and explore a bit more of Bali. My friends chose the eco cycling tour and described it as a gentle downhill ride taking in some of Bali’s most beautiful sites. I chose to do the silver jewellery class and had a wonderful and creative time designing and then making two rings – a silver one for my husband and a brass ring with a citrine stone for myself. The class was a lot of fun and a little break from the physical activity of surfing.

Melting down silver

My Citrine Brass Ring

Eco Cycling Tour Ubud

This week away was certainly much more than just a holiday. All of us have families and a busy work life. This time away from our home lives felt like an extravagance especially when we were planning the logistics, but we were all fortunate enough to have supportive partners/families to make it possible. We have now all returned home refreshed, renewed and invigorated. We talked, laughed, cried and more importantly regained our sense of self. The experience has also made me re-evaluate the importance of self care and explore ways I can make sustainable changes to my everyday life that can support this, and I am truly grateful and thankful that I was able to do this with two of my dearest friends! 

Closing Ceremony

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.