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 lifetime 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 its 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. The keyword here is ours!
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 lifestyle 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, but he also 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.
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