Saturday, January 23, 2016

Acknowledging the emotional needs of siblings of a special needs child!

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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