A Father's Perspective: An exersize in transparency?

A friend once told me that there was some value in writing a blog about autism; in part, because as a father my voice or experience with raising a child with autism might be 'different' in some way. She told me this 'different', male perspective, might be important to share with other father's and mother's of children with autism. As a father and partner, the process of being 'transparent" with sharing my feelings can be a difficult thing to do, given the expectations within our communities to be strong, private and always in control. The reality of being a parent of a child with autism is that , 'you are never really in control' and you must come to accept this fact as part of your own self-care. Yes, you can and should have a plan, but we as men must accept that our plan for the future of our child with autism and our family is 'forever fluid' and we must be flexible enough to accept change and mistakes as parents as we move along in this journey.

In my opening blog I stated:

A parent's perspective on autism is individually unique. Even a mothers' perspective on autism versus a fathers' perspective on autism can be both similar and different in many ways. Neither gender  is the right or wrong perspective, just 'different.' 'Different' is a word that parents of a child with autism must embrace fully; rather than fear, if they are to not only survive, but flourish.


I do think that men and women process their experience with autism in different ways. Faced with the fears of an uncertain future for our children, men and women cope in very different ways sometimes. As we cannot read the future through crystal balls, it is easy to feel hopeless and helpless about what our child's future may hold. The reality is that as parents of any child with autism, we cannot predict or guarantee what the future may hold for them and that is a very scary reality of parenting.

Faced with the proverbial question of  "who will take care of my child when I am gone; " I , as a father tried to take control of those aspects in her life that I could and, with great difficulty, let go of those aspects of which I had no  or little control. What I could control, in part was to set up a plan to safeguard her financial future. We reviwed the guardianship choices in our will, we reviewed our life insurance coverage and we researched an finally opened an Registered Disability Savings Plan (RDSP) for our daughter to compliment her existing Registered Educational Savings Plan (RESP) to cover our bases in case she did not have the skills to earn a suitable income to lead an independent life as an adult. We are also, now in the process of researching options like Henson Trust accounts as a provision in our will. These steps I could do. These steps gave me some degree of peace of mind and then I checked them off my list.

As a father, I know that I have been socialised to 'take care of my family' and that does not necessarily only mean being the sole bread winner. My job, was and is, to protect my partner and kids from emotional, physical and other harms. This can place immense pressure for a man to move toward this seemingly unattainable goal at times. Autism was an unknown harm that I was not prepared for as a parent, despite my occupational training in this area; a harm that left me spinning out of control as I tried to cope with  and accept that my family life had changed markedly in 2005 when our daughter was diagnosed.

Letting go of those aspects in my life, related to autism, over which I had no control; was ultimately a decision necessary for the survival of my own emotional health and for the health of my relationship with my partner. Today, or at least on most days, I think I am able to do this more effectively. On other days, not so much! My acceptance of those autism aspects in my life over which I have no control does not make me any less of a man or a father.

Talking about my feelings as I am doing so in this blog, does not make me any less of a man or good father either. Talking about my feelings does make me feel more vulnerable to the opinions of others; however,  I cannot rely on my silence as a shield to protect me from the fear, grief and sadness that I sometimes experience. This shield also prevents me from celebrating the joys of my daughters accomplishments fully and savour my hope for the future for her. These are truths that I could not so freely speak about in the past, as I went through thoughts of grief, loss, despair and fear. I still have those feelings from time to time, but they are more balanced of late; with those of happiness, hope and amazement as I learn amazing things about and from my daughter each and every day.

As part of my blog, I have made a special side column entitled: "quotes from our daughter;" some of which are reflective of her concrete thinking, some of which are reflective of her wonderful sense of humor and some of which are reflective of just how far she has come in a short time. At a minimum, her quotes make me laugh and smile; which is vital ingredient for everyone in our self-care diet on each and every day. I would challenge all parents to keep a list of their child's quotes, actions , gestures or triumphs as a way of celebrating your children's exceptionalities and boosting your family's spirits!

In writing this blog, I  have taken the risk of opening up myself to explore and put in balance, all of these feelings and experiences. Starting this blog was just the next step in becoming a more 'transparent' father.
I know that other parents who are reading this blog may be at a different place in their journey with austim. That is okay! I know that each child with autism is a 'differently' unique individual with varing degrees of strengths, challenges and levels of independence. Nonetheless, I think we as parents are all searching for an acceptance of a balance in our life; as we find the 'truths' within ourselves that allows us to take a deep breath, exhale, get out of bed each morning and find some joy in the eyes of our children and our partner, as this gives us hope and purpose. As I have often said in my work as a mental health clinician working with families: "parenting is the toughest and most wonderful job you will ever have in your life!" This is a truth that I believe in, even on the darkest of days.

Raising a child with autism produces considerable stress, as every parent tries to to cope with this experience as best they can. Each partner has a 'different' way of coping with stress, some of which may be based on how we are socialised as men and women in society; and some of which may be based on the baggage we carry from our previous relationships and our family of origin, which reflects how we have been brought up as children ourselves.

I guess what I am saying is that we may have 'different' perspectives for alot of reasons. I believe that the important thing is that we learn to understand why we have a certain perspective on parenting and life and take that into consideration when we make decisions affecting our families. It is also very important for each parent to try to understand the others life experiences and how they shape their parenting style (good and bad) ; before we jump to pass judgements on our partners parenting choices. Each parents parenting style  may have been molded by a 'different' yet equally valid place or experience. The process of keeping our communication open about these parenting differences and a willingness to compromise in building a joint parenting plan, in the best interest of your child, is a challenging goal for every couple to work toward. That is okay too!

These different male-female perspectives can lock parents into conflict,  as they both try to survive emotionally as they try to navigate the autism journey with their family. My partner and I too have struggled with understanding each others perspectives and in building the common ground needed to survive and flourish as a family.

One of my best friends gave me the sage piece of advice as follows:

"all couples fight....it's what you do about it that matters."

I cannot think of a wiser truth about relationships!

A casualty of this clash of perspectives between partners may be the tear in the fragile fabric of their relationship with results; which may lead to, in varying degrees, to a breakdown in their communication, intimacy and connectedness over time. These fractures in the relationship may result in the formation of other 'elephants in the room' which nobody wants to acknowledge or talk about openly; adding to the stresses within the relationship and the family as a whole,  if they are not addressed between the couple. Kids experience all the negative emotions or unspoken tensions that exist between the parents, even if we think that they are too young or developmentally delayed to understand it. Kids of any capacity understand our negative tone of voice, the deathly silences that can choke a room and the awkwardness in our day-to-day interactions.

We as parents must take control of our own self-care and in nurturing the health of our spousal relationships if we hope to provide a safe, consistent and loving home environment, within which our kids can  learn how to to be independent, happy and to love others. This act of self-care is one action item that we do have control over most of the time; and as such, we need to support each other as parents to seize the day, take small breaks, and develop social and recreational opportunities in this regard for ourselves. If you can't take care of yourself, it is very hard to be emotionally and physically present, and able to support, nurture and love our kids each and every day.

This is not to say that there are not health, geographic or financial barriers that make these acts of self-care seem impossible. All I am saying is that we can start with small steps, such as a daily walk, a phone call or an email to a friend as a means of setting daily and attainable goals to make us feel better about ourselves; and to lighten the weight from our shoulders, at least for the moment.  And yes, some days will be easy and some days will continue to be much, much harder.....which will require these 'banks' of energy and patience which we store up through activities of self-care, in order to overcome.

Unfortunately, the reality is that the current divorce rate for parents of children with special needs is very high. I can recall various statistics in the United States and Canada which quote rates of divorce in the 80% range as compared to the norm of 50% for all partnerships. In my opinion, kids with autism and parents of kids with autism, need the support of each other (whether they are living together or apart) in order for each child to have the opportunity to flourish.

That being said, the challenge is to try not to let ourselves become another statistic, where possible; by taking charge of those healthy choices we have some degree of control over such as self-care; and trying to understand each other a little better.

A Parent's Perspective on Autism

A parent's perspective on autism is individually unique. Even a mothers' perspective on autism versus a fathers' perspective on autism can be both similar and different in many ways. Neither gender  is the right or wrong perspective, just 'different.' 'Different' is a word that parents of a child with autism must embrace fully; rather than fear, if they are to not only survive, but flourish.

What is a parent's perspective on autism?

It is born within the heart, mind and spirit and is influenced by much we experience as a family, some joyous and some indeed very challenging. So challenging, in fact, that it tests your very core values and beliefs; as well as your willingness to persist in the face of your fears in maintaining them, as you venture forward with a 'brave' face but with 'fear' churning in your belly, on this very deeply personal journey. This journey is a marathon and not a sprint as there is no easy 'fix', although on the darkest of nights, we wish there was one. This is a journey a family must learn to navigate , without a clear map; on the road to understanding, accepting, embracing and living with all that autism means to your family.

No two families' experience with autism is the same;  just as no two individuals' with an autism spectrum disorder are the same either. As a colleague of mine always serves to remind me, "If you know one person with autism.....you know one person with autism; " a statement which makes me very mindful of each child's individuality and their inherent right to happiness, whatever that may look like.

As a mental health clinician working with families with autism over the past 13 years (a career I knew well before I became a parent of a child with autism) I thought I new a lot about this 'autism experience.' I have come to know that over the 7 years of my daughter's life thus far; I had really known very little of a family's true experience with autism up to that point. With the birth and subsequent diagnosis of our daughter with autism in 2005 our understanding began with fresh eyes .

Over the years with each passing day, our daughter taught me something unique and important about autism, myself, my community and my relationship with others. Over the years I have often joked with mycolleagues at work when I had bought a new toy, a new product or a new learning material for her to try, that I needed to take it home first to my 'tester' to see if it really was of any use. That 'tester' was my daughter. What I had also come to realise was that, ' what worked for her may or may not work for other children that I had worked with and vice vera." Nonetheless, our daughter's experience and feedback has continued to be a valuable ongoing education process for both her and I. In future blogs, I hope to share some of our experiences with you.

Over the course of my life,  I have always believed that 'Information is Power.'

As a parent of a child with autism, wishing to help her to find her way in the world; and to build the skills necessary to be both relatively happy and independent , I have always believed that it was important to seek out new ideas that might help her be more available for learning.  I firmly believe that children with autism can learn. They just learn in a different way. Our responsibility as a society is to match our teaching stryle to their learning style, just as we match a person with a physical disability to the means by which they can gain mobility to access the physical world around them. We must meet each child where they are at! If we do so, they will experience many successes along the way.

The topic of information related to autism is very vast and fairly conroversial at times. I shall explore and comment upon this topic in future blogs. It is important to remember that information comes from many sources ranging from experience to 'Gold Standard" research based on the scientific method. Which is best?We must always be critical about questioning all that we read about autism, rather than accepting all 'information' as fact. Parent's always have a 'critical eye' when it comes to safeguarding their children, and sifting through the clatter of information you can find through the media and internet is another area where we must show some caution.

So, when did my perspective on autism shift? Here is a bit of our story....... about how 'autism' became very personal to our family............ 

I was off work and spending much of my time at home, facing a very different challenge at the time. I was in the midst of what would turn out to be a 2 year battle with cancer. Today I am over 5 years clear of this disease. At the time of my illness, I was often irritable, exhausted and sometimes filled with despair; which was not the optimal time to rely on your instincts about anything. Nonetheless, my partner and I began to notice a few odd things about by daughters lack of typical development in many ways around the age of 12 months. She didn't play with many toys the way other kids her age did. She walked alot on her tippy toes. She stared off into space and seemed as if she didn't hear you because she never seemed to respond to her name. We even had her hearing checked and it was just fine. But ultimately, it was when she did not begin to meet the typical age-range milestones for babbling and even her first spoken words, in combination with these other concerns, that our observations collectivelly grew into greater worry. We knew something was wrong.

Our perspective as parents shifted abruptly, with our first suspicions that our daugher had autism at the age of 12 months to the more concrete and somewhat parralyzing diagnosis of autism at the age of 18 months. And so the journey though autism began for myself, my partner, our extended family and our close friends; a journey that continues to evolve to this day, with some days being hopeful and other days  more fearful.

This journey is truly a tenous balance between hope and fear; a balance which we have found it necessary to manage in order to live life more fully, rather than just merely survive within the vacuum, within which autism can isolate families at times. The stress of trying to manage the stress of this juggling act took its toll on our relationship as friends, partners and parents. Over time, we began to better develop the tools toward greater self-care and moved  to repair our leaky communication patterns that had become a casulty of this journey with autism. 6 years into this journey our relationship has strengthened dispite the many pitfalls. This is a topic that I will explore further in future blogs. It is often a topic that does not get mentioned out loud ; much like  like the proverbial elephant in the living room. Feeling overwhelmed by the thought and reality of living with autism can pull parents in different directions sometimes.

Why did I decide to write this blog?

One day, a friend suggested that I might want to consider writing a blog about autism; as he commented,  in his blunt, back-handed and supportive way, that I always had a lot to say about autism. I assumed he meant that was a good thing? :) I have always been very careful as a professional in supporting families with autism, to provide them with access to the most accurate, reputable information possible on autism. The information offered was based on the current 'best practices'  across many fields of  study, from psychology to education, which support persons with autism. It is always important to keep in mind that opinions differ on what is indeed 'best practice' in the treatment of autism as some treatment methods are more based on anecdotal observation rather than pure 'gold standard' research studies. Nonetheless, I have tried to be careful and selective when offering opinions to others about what may or may not be effective in helping an individual with autism.

As much as anything, I think one of the reasons I decided to finally begin writing a blog about autism was for the benefit of my own self-care; to give me a voice to talk about, think about and discuss issues related to autism and how they have impacted my life and my family. In some ways, writing the blog served to let the 'elephant out of the living room', and maybe to encourage other parents to do the same. Talking about our feelings about autism may be both a bit liberating and empowering, as our voices can now be heard!

In writing this blog, I hope to be able to share some of my experiences as a parent of a daughter with autism. I  hope that my story resonates with some readers, provokes discussion and serves to build a greater capacity within our communities to accept, understand and embrace persons with autism for all they have to offer us .............and they have much to offer us, in my opinion.

"A Father's Perspective on Autism," will be my voice for exploring my experiences, and those of my family; which are related to our ongoing journey with autism. Please join me in this journey and share your voice with me as well.

Please share this blog with others so we can build greater capacity for understanding autism within our communities.

Cheers

Paul