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| The boys...Murad and Mo |
The diagnosis of a child with ASD is a traumatic event to
say the least. The ensuing aftermath of the cyclonic event unleashes a barrage
of emotional ups and downs midst frantic efforts to counter the diagnosis . The first few years are often
the most chaotic and unpredictable till the initial frenzy settles down into a
routine that becomes a way of life. Still little glitches here and there continue
to mark the journey but are taken in their stride for they are part and parcel
of the spectrum.
In the cacophony of
the ‘cyclone’ the child with autism is naturally the focal point of
his/her parents. Time and effort are synonymous with a good prognosis and I
remember Mo’s therapists repeatedly telling me soon after his
diagnosis that “we can only do 20% of the work, the rest is up to you”. I also
remember those words becoming my life’s purpose, consequently drawing other
members of my family, my husband Osman and my second son Murad (two years
younger than Mo) into battling Mo’s autism.
Murad who was a developmentally advanced child adopted the
role of Mo’s elder brother from his toddler years. He carried the role to
perfection; I can safely say he contributed as much to Mo’s progress as Osman
and I. Murad was our star child but Mo our universe and that is how the boys
grew up as friends and brothers.
Osman and I always tried to maintain a balance of attention,
love and nurturance between Mo and Murad and it was not too hard since both
brothers bonded well around some common interests such as cricket and Pokemon
games and we improvised most activities around these interests involving both
children. Naturally Mo required much more one to one attention, which he duly received, but I don’t think Murad lacked too much in that either for Osman and I were
conscious that he too was just a child, granted a very self-sufficient one and
mature beyond his years. A few years later Mo and Murad were blessed with a
third brother Mikail, who was and perhaps will always remain the baby of the
family.
However, it only struck me
recently that because Murad never gave us any cause to worry at home or in
school, Osman and I may have neglected to pay attention to a significant aspect of his emotional development i.e. the need to process and express his confusion/frustration or even grief about his brother’s uniqueness and it’s correlated affect on the entire family. Preoccupied
as we were with so many of Mo’s problems, possibly we took Murad’s role as Mo’s
protector and helper for granted. Perhaps unconsciously he had to bear the
brunt of the 'perfect' son throughout his childhood!
When he was just 5 or 6 years old, I recall talking to Murad about Mo and autism. I also recall
breaking down in front of him at times when I was overwhelmed with stress and sadness. Murad always listened to me attentively, whether he wanted to or
not, possibly internalising my anguish and pain as well as his own.
The realisation that Murad may have some unresolved,
unexpressed emotional baggage only came to me when he refused to read my memoir
‘Wrapped in blue’ about raising Mo. Not only does he not want to read it, he
doesn’t want to hear about it so much so that when I bring up any discussion regarding
the book I can sense his discomfort.
Consequently, I have all these unanswered questions. I want to ask Murad if all this time
he has been holding my emotional baggage as well as his own? Has he ever resented Mo for taking up his parents
attention? Did he ever wish that Mo was not his brother? I want Murad to know that it is ok to have felt angry, frustrated, embarrassed and so many other emotions that a stimming, tantrumming, rigid and simply very very different sibling can cause.
For now I am willing to let go…let these questions lie low. Also
I will not ask Murad to read my book anymore. It is not fair of me to make him
vulnerable to feelings that he may not be ready to express.
Thus, I have been
thinking, what could I have done differently so that today Murad did not have
to struggle with acknowledging/expressing his feelings towards his brother, the
diagnosis that affected the entire course of his family’s life? In retrospect I wish I had done something to help him when
he was younger. Perhaps I could have put him in therapy group for children with
siblings of special needs children. Bringing together siblings in similar
circumstances, possibly struggling with the same issues and questions would
have helped. Such groups provide a safe space for children to talk about their
families, share difficult emotions without feeling a sense of guilt, tell stories, exchange ideas and draw support from
each other.
Addressing the psycho-emotional needs of
siblings of special needs children alongside everything else that we are doing
for our special kids is equally important. It may be detrimental to ignore this aspect of our
typical children for after all they too are affected in every way by the
presence of an atypical sibling.
I may have missed the boat for my son but for some of
you it may still not be too late.
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