Thursday, January 28, 2016

Neurodiversity

Dany's emotions
The other day I and was unexpectedly blown away by Dany’s response to his art work on emotions. Dany is an 8 year old and is autistic. His natural inclination is to draw detailed skyscrapers with elevators using lead pencil but upon my directive that day he painted an abstract image depicting his emotions and uttering the following sentences as he applied paint in circular motion to the surface of the paper:

“Emotions need to stick together. Emotions are a team, sadness and anger and happiness and fear make two teams”.

“Anger protects sadness”.
“Seriousness surrounds everything”.
“Emotions must be careful”.
This sort of insight from an  8 years old on the spectrum was mind blowing  indeed! Were his comments a learned response, a coincidence or some superficial knowledge that he had acquired from somewhere?
I found my answer through the astute minds of the following:
Paul Kalinithi, a brilliant neuroscientist with a keen intellect, while reflecting upon his mortality in his memoir ‘When Breath Becomes Air’, underscores the structural and functional intricacy of our cerebral matter, whereas Steve Silberman in ‘Neurotribes. The Legacy of Autism and Future of Neurodiversity’ highlights the diversity of the human brain in his book by recapitulating the history of autism through the past century. However, it is Temple Grandin who provides the most fascinating insight into its extreme complexity in 'The Autistic Brain' from the perspective of a scientist as well as a neurodiverse individual or simply the most famous autistic person alive.
 According to Grandin, “what’s in my autistic brain is not necessarily what is in someone else’s autistic brain”. Yet she adds that individuals with autism are grouped under a cluster of symptoms that are described by specialists who are not on the spectrum themselves. This labelling which has gone through many modifications in the Diagnostic and Statistical Manual of Mental Disorders or DSM, though necessary on many fronts can be conversely detrimental to the individual with autism.
 Labelling is important when the question of accessibility to therapies, insurance claims and statements arises. It loses value when we fail to see the individual as an entity with unique potential. We do this automatically without realising that it can be harmful for the prognosis of the subject in question.
For instance, there have been cases where a mute child is considered profoundly retarded but one day starts typing in sentences or an uncontrollable, tantruming, non-verbal one who ends up writing a book.
So then was Dany like Tito (the boy who Grandin talks about in her book) who experienced his reality in two parts “an acting self” where he was perceived as intellectually disabled because he could not talk and would run around the room flapping his arms or “a thinking self” someone “ filled with learnings and feelings” who published several books after his mother tied a pen to his hand so he could write?
Thanks to the three books that gave me my answers, I learned an important lesson: never to underestimate the potential of the human brain.

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.

Saturday, January 16, 2016

Snippets from my memoir # 1

Hello,
As part of my blog I want to share snippets from my memoir 'Wrapped in Blue' to raise awareness of ASD and destigmatise mental illness.  Hence the following...

... first-time parents sometimes don’t know any better as they do not have older children to compare developmental milestones or behaviours with. Moreover, Amaar and she had never had any interest in reading books related to child development and care; after all raising a kid was no rocket science!
Zaki hardly babbled or cooed in his first year, perhaps he would be a lazy talker. He loved music and showed a preference for certain songs by jumping excitedly to the rhythm or clapping his hands and to his parents this meant that he was engaging with his environment appropriately. His eye contact seemed fine as well and since he was a smiley, happy kid, no one was alerted to anything unusual in his developmental milestones. Thus, happy-go-lucky Zaki turned one and his birthday was celebrated with great festivity in Karachi, for which both sets of grandparents flew in from Lahore and Rawalpindi.
The few people Ammar and Zoya socialized with had older kids, hence, their exposure to toddlers was very limited. Had they been in Lahore surrounded by family and friends perhaps they would have caught on to something faster. Someone may have sounded an alarm bell.
Indeed, during one of Zoya’s trips back to Lahore in Zaki’s second year, Abba circumspectly voiced his concern about Zaki’s lack of speech. He was immediately rebuffed with a barrage of responses, “Boys talk later than girls”, “He is only two years old leave him alone”, and, “Uff taubah (By God!) Kami you are always so negative”. But where Zoya’s maternal instinct had failed, Abba’s grandfatherly instinct had made him sneak away Zaki to a paediatrician.
After Abba returned from the doctors with Zaki in his arms, one could visibly see his relief. The doctor had confirmed that there was nothing wrong with Zaki and he was just a late talker, and that was that.

So much for your paranoia Abba, didn’t we tell you there is nothing wrong with Zaki!

To purchase a copy of Wrapped in Blue click on the following link:

 http://www.amazon.com/-/e/B013BP9Q32 

Saturday, January 9, 2016

What does acceptance really mean?

I remember saying the following sentence very soon after my son was diagnosed with autism "I have accepted that Moeez is autistic and I am going to deal with it to the best of my ability". I was proud of myself for not being in denial even for a short while and wasting no time in strategising and implementing a therapeutic course for my son. Thus, as far the word 'acceptance' in its generic connotations is understood, I had aced the act!

I think that most parents of special needs children will agree that the path of raising their special children is often strewn with extreme emotions.There is celebration on the one end of the emotional spectrum and heartache on the other. With stereotypical children this upheaval is not so emphatic, at least that is how I have experienced it. For instance, where my other two (stereotypical) boys are concerned, I am not easily distressed by the ups and downs in their lives just as I am not overly exuberant of  their success. Therefore, it is not hard for me to accept that Murad, who is a very talented sportsman, has not excelled in any sport due to his lack of passion and neither am I heartbroken that Mikail plays no sports at all considering both my husband and I are quite sporty and very fitness conscious. Am I an awful mother? I don't think so. It's just that the challenges that I have faced with Mo have  turned me into a 'chilled out mom' as far as my other children.

Anyway going back to 'acceptance', as  the years flew by  I realised that the act of 'acceptance' in the context of Mo's lifelong challenges was  a recurrent theme in my life which replayed every now and then following the latter's developmental trajectory.

As Mo grew in years following an uneven path of successes and set backs, I constantly had to toggle the barometer of  'acceptance' with relation to him.

For instance along my journey with Mo I had to 'accept' that:
Mainstream school for Mo was not a suitable option anymore and that he would have to go to a special school.
He would probably stimm through his life and standout in public as odd while doing so.
That Mo would have to opt for a life skills path and not go down the academic route.
That he would never be able to lead a fully independent life.
That Mo would probably never have a friend in the true sense of the word.
 That he would not grow taller than his 5ft height no matter how many stones I turned. so on and so forth.

Thus, whereas during the very first few weeks of Mo's diagnosis,  I was convinced that I had dealt with 'accepting' autism, it kept on piling new challenges on me through the ensuing years to date.  Challenges whose reality I had to learn to accept. 'Acceptance' has definitely become easier with time but I know now that it is a continuous process and not a one time thing. This is just the nature of the unpredictability of autism.