Showing posts with label Parenting. Show all posts
Showing posts with label Parenting. Show all posts

Tuesday, 26 February 2019

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.

Tuesday, 29 May 2018

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.

Monday, 4 December 2017

Celebrating new lives and a new life!






One of my dearest friends has recently had her first baby. It is such an exciting yet exhausting time but unfortunately,  as we live in different states it has been really hard to be connected to her in this new journey. I have two other very close friends who are also going to be first time mums soon, both of whom live far away. I have been thinking about the early days with my eldest, and reflecting on how difficult and emotionally draining it was especially in comparison to the second time around when I at least had some clue what to expect. So, with this in mind I thought I would write them a letter.


To my dear and special friends,

Wow! You have entered that ‘magical’ realm that is motherhood – I call it serene anarchy! Congratulations! I am sad that I can’t be right by your side as you navigate these early days so I wanted to write you a letter with some thoughts. Before you worry that I am writing an essay spouting unwanted advice, I just want to say that this is hopefully not going to be that. These are just some of my random musings about little things I wish someone had told me before I had J. Admittedly it still probably would not have made much difference to the way that I struggled but they are things that may have made me giggle or given me a slightly different perspective on things.

1     1.  Your primary job in the first few weeks of your baby’s birth is to stay alive and keep bubby alive. If you have done that, then you are winning on all fronts. If you stay in your pyjamas for more than 24 hours, IT IS OK!  

2.     No matter how many times you are told ‘this too will pass,’ it still feels like forever. Its ok to have moments where you hate what your life has become.

3.     Breastfeeding for many of us is bloody painful and not that natural. It took me weeks to get used to it and not want to swear black and blue each time he latched. It did get easier and I have to say it wasn’t so bad the second time round. In the same vein, it really matters little whether you breast or bottle feed. A fed baby is a good baby.

4.     Many men, (I have surveyed other women on their view on this) have some strange inbuilt ability to not hear crying when they are sleeping. The number of times hubby said to me in the morning ‘ Oh baby had a good night didn’t he? Didn’t hear him wake….. ‘ I won’t tell you what my response was especially when I had been up several times in one night . Needless to say he learnt quickly just to ask how my night was and not make any assumptions.

5.     You will feel guilty. You will feel guilty no matter what you do. You feel guilty if you don’t do it and you feel guilty if you do it. You will feel guilty if you don’t feel guilty. Just learn to live with it, accept it and embrace it. It never stops.

6.     For every intervention that has evidence it is good for your baby there will be equal evidence that it is harmful for your baby. Just depends on what source you take it from. So, take whatever advice sits well with you and ignore the rest.

7.     Even if you are a very socially connected individual there will be times you feel extremely isolated and lonely. Walking your local streets with bub in pram / carrier or having a coffee at a café regularly can help, and it certainly gave me some respite from the loneliness.

8.     Admission to sleep school does not mean you are a failing parent. There seems to be so much stigma attached with needing extra help and guidance. I struggled through the first 6 months with J trying to find my feet with the whole sleep routine. Eventually with a combination of trial and error and also internet sleep advice it sorted itself out. With my second baby though, I knew I was going back to work early and just wanted some support. I spoke to my GP and booked myself into sleep school when S was 6 weeks old. It was fabulous and gave me the confidence to stick to a few techniques which helped all of us get some form of a routine.

9.     If you are a slightly older mum, have a type A personality and a little bit on the OCD side (which sums me up pretty well) then expect the road to be rocky. I am used to working hard but I also expect to get results if I follow all the rules and appropriate directions. Seems obvious now, but at the time I found it hard to accept that my babies wouldn’t do as book A, B or C said they would even after I carefully and diligently followed instructions!

10.  Each day, take a moment to reflect on the amazing creature that is your baby. Sometimes a little conscious mindfulness can really make the difference to your day. I have fond memories of both my bubs cackling and giggling at me with no care in the world whilst I blew raspberries on their tummies.

Finally, good luck my dear friends. Although I can’t physically be there with you I am always only a phone call away if you need a listening ear or a virtual hug. Thank you to you also for being with me and for all your patience whilst I navigated my early days.

Xxx S