Tuesday, March 15, 2016

Saturday, March 12, 2016

Why fathers are so important!

The other day at the book reading in Singapore, soon after the Q&A session an elderly woman wearing a pastel coloured saree approached me. Making her way purposefully through the crowd, she walked up to me and with a light touch of her hand on my arm, very softly she spoke “you must remember one thing, you could not have done all this without your husband’s support”. By ‘all this’ she was referring to my life story that I have published as ‘Wrapped in blue,’  the reading of which was the purpose of that day’s gathering. In my memoir I describe the ups and downs of my journey with my son Moeez or Mo who has autism. I looked up at the lady  and smiling  outwardly I replied “you are very right, I couldn’t have,” at once inwardly acknowledging the wisdom of her words for I was fully aware of their veracity.

I am confident that not a single person can claim that raising a child with special needs is plain sailing. As a matter of fact, only parents in similar situations can understand the enormity of the task which varies in degrees of difficulty, challenges and successes for each family. However the one thing I can vouch for beyond any doubt is that going the distance alone is far harder than sharing it with a partner. When I say alone, I mean as a single parent and also as a married person albeit with a husband who is either one or all of the following:
In denial
Indifferent
Insensitive
Impatient
Negative
Non-cooperative
Unreliable

None of the above would be categorised as virtues in any given situation let alone a marriage, but when a child with differences is born to a couple the dynamics of the relationship between husband and wife take on an entirely different spin. Suddenly the impending joy of  parenthood is replaced by the prospect of a life time of  uncertainty and constraints. I am mindful that I speak from a very Asian perspective and that my observations certainly do not apply to all couples, but in most cases I have seen that it is the mother who takes upon the role of the helmsman with regards to the special child’s treatment/therapies, simply because she continues to fulfil the role of the primary caregiver which is  her natural disposition. To be fair, the father’s who are the sole breadwinners are shorter on time but where both parents have careers often the mother will try and juggle her time between her child and her work if not give up her vocation entirely. Point being that moms are generally more available than dads and there is nothing wrong with that since someone has to put food on the table.

However, the fact that fathers may not be the main attachment figures in their children’s lives and are busy with work does not absolve them from the responsibility of contributing to the psycho-emotional welfare of their family. In fact I’d say that their role and it’s significance must not diminish due to time and work constraints.

I like to use my own case as an illustration because I have lived it and learned many important lessons from it as well. I was not working when I discovered that Mo had autism whereas Osman, my husband,  was in a full time job in a new country where we had just moved. We jumped onto the therapy bandwagon immediately after Mo’s diagnosis and he became the centre of our existence. Key word here is our! Osman and I became a team. Though  I made most of the decisions regarding Mo’s schools, his doctors and therapists; I made changes in our life style where necessary, introduced new rules in the house if they benefitted Mo, tried out all sorts of scientific and unscientific modes of treatment that I thought would perhaps help Mo, there was one thing that was constant in my life and that was my husband’s complete and unwavering support! Not only did he stand by my choices, he became my co-therapist when he was not at work and during the weekends. Imagine my relief at the end of a week of trying to be a 24/7 therapist with Mo, also by then I had another toddler as well, and knowing that reprieve was just around the corner; that when Osman would come back home from work he would take some of the load off of me; that I could share my ups and downs with him and that he would listen and understand. What if that had not been the case? Would Mo be where he is today? Would I have had the energy to pursue a mid-life education/career?  Would my family be as strong and bonded as it is today? In all probability…no, nein, nada! No matter how strong I think I was as an individual, I would have been half of what I am today if Osman had not been my pillar of strength through the challenges that we faced together these past fifteen years.


Tuesday, March 8, 2016

Wednesday, March 2, 2016

Mama help me!

The word ‘trauma’ calls to mind earth shattering, life changing events such as death, accident, major illnesses, natural disasters and more recently terrorist attacks.  The psychological aftermath of these events manifests itself as panic attacks,  anxiety, depression, dissociation and flashbacks etc. The condition associated with these symptoms is called PTSD or Post Traumatic Stress Disorder. We are all too familiar with this term thanks to Hollywood movies many of which have been based on the life of traumatized war veterans who survived the Vietnam war.

Recent research has broadened the scope of trauma within the context of PTSD. For instance what may seem to be ‘stress invoking’ but not ‘catastrophic’ events in our lives or those of our loved ones, may still have the capacity to cause PTSD depending on the age of the individual undergoing the trauma and the way it was processed at the time of occurrence.

To illustrate my point, I will cite the case of my own 12 year old son Mikail who had a propensity for severe croup attacks since birth. These attacks occurred bi-monthly from his birth to 6 years of age till he outgrew them.  To quote the Mayo Clinic “Croup often begins as a typical cold. If there is enough inflammation and coughing, a child will develop a loud barking cough. This often is worse at night, and is further aggravated by crying and coughing, as well as anxiety and agitation, setting up a cycle of worsening symptoms. Fever and a hoarse voice are common, too. Your child's breathing may be noisy or labored”.

Mikail’s attacks were of an alarming intensity. He often required a panic stricken trip to the hospital emergency wherein he would be administered steroid injections and subsequent nebulisation over the next three to four days. Osman and I have had many a sleepless nights with our boy who would wake up in the middle of the night with a bark like cough, preempting a visit to the hospital where the nebulisation was almost always forced upon him out of necessity.

This routine lasted for many years till Mikail outgrew the croup but the impact it had on him psychologically is evident even today. For instance, Mikail for years was petrified of any kind of harm to his body. A minor cut would invoke a barrage of tears and hysterics so much so that he would beg to be administered medication immediately even if not required. Mikail avoids most activities where there may be a slight chance of bodily harm, therefore, he has always stayed away from competitive sport or rough play. He freaks out at the idea of vomiting and needless to say is a very nervous patient.

I made the connection between Mikail’s childhood illness and ‘state of fear’ a few years back and instead of reprimanding him for fussing too much over nothing, I decided to use calming techniques to help him regulate his emotional outbursts. Of course I did not have an epiphany to go this route, it was only because I started to read research related to trauma that I realised what was happening. The situation has improved since then if not disappeared completely.

The critical thing to remember is that traumatic events are stored in the non-verbal part of the brain as  bodily sensations and feelings. When these sensations are triggered later on in life (smell, touch, sound or taste of something all could be triggers) the trauma reappears as a somatic or bodily reaction. Thus, no amount of logic will lessen the effect of retraumatization because the trauma memory is stored in the limbic system rather than the neocortex which is where higher level cognitive processes take place. So basically you can talk about it all you want but till you involve the body itself in the process of healing, the trauma will remain unintegrated in the brain.

I am sharing this with you just so that as parents when sometimes we fail to understand our children’s irrational behaviours, we need to stop and think before passing judgement on them. It is wise to do a little investigation into why a behaviour has been triggered for it may be related to an event that may have traumatised your child unknowingly to you.

For those interested in further reading on the subject you may like to read the following: