Death of the soul!

“Silence=Death” was the slogan used by early campaigners for AIDS awareness. Silence about trauma also leads to death-the death of the soul” (Bessel Van Der Kolk).

I tried to visualise these powerful words and the images that appeared to me were of bodies contorted with pain, soul less eyes hankering for answers, minds twisted and fearful, sealed lips longing to give voice to the anguish that knows no boundaries between time, space and matter.

These images are personifications of ‘trauma’ that is neglected, untreated and unresolved… in short swept under the rug! I have written briefly about the etiology of trauma in one of my earlier blogs (What is trauma and what arttherapy can do for you), however I was once again reminded of the criticality of giving voice to the often suppressed severe mental or physical pain that may be caused by an event, whether done to you or done by you that would qualify as 'trauma' 

 What reminded me of the importance of communicating and validating ones emotions through external expression, be it words,  imagery or other creative means of communication, was my friends post on Facebook where she shared her 16 year old daughter Zoya's blog. In her blog Zoya writes openly about her debilitating illness, called Complex Regional Pain Syndrome or CRPS, from she has been suffering for the past three years. The brave teenager has done what many of us may never be able to do i.e. to talk unabashedly and honestly about her pain and suffering not only to help herself but also to help others in similar situations. I do not know how Zoya reached this amazing level of maturity and insight, what her process of dealing with her illness has been like, but what I do know is that at such a young age she has learnt the wisdom that evades many of us for our entire life span.  To read Zoya's blog go to: crpsgirlblog.wordpress.com

Reasons for trauma can vary from something as common as bullying and neglect to abuse and rape, war, accident, disease, death and so on.  Life is full of traumas and everyday events that may be physically or mentally painful do not require specialist treatment. Resilient individuals can even cope with bigger traumas with the support of family and friends. However, when a trauma results in symptoms such as flashbacks, dissociation, numbing, relational difficulties and so on, then intervention is necessary. Last but not least, successful recovery from any kind of trauma is highly dependent upon support from relationships within family and/or friends.

A call to parents of children with special needs!

It’s not the first time I have felt apologetic, almost embarrassed in front of  parents of special needs children who have very limited or almost no access to expert therapists and therapeutic resources in their countries, whether due to lack of provision or affordability, whereas I have had easy access and the means to both for my son Moeez who was diagnosed with autism at the age of three.  Mo is lucky to have been treated by top therapists in Singapore, where I moved to from Pakistan, just before he was diagnosed. He is now studying in a specialist school in England. God has been kind and munificent beyond words and I can not thank him enough!

However, when I go around extolling the virtues of one intervention over the other, emphasising urgency and consistency, I wonder at the utility of my words when a parent turns around and asks me helplessly, “what do I when there are barely any resources available in my country to diagnose and treat my child? What little is available is so expensive that it is out of the reach of most except a privileged few. Where do I go? How can I help  my child?

I often find myself grappling with advise for the justifiably frustrated parent, who is battling an ignorant and discompassionate society,  schools that cater to only ‘normal’ children, a severe dearth if not abscense of  experts to treat and diagnose most developmental issues and special needs. Really… what does one say to a parent whose child is suffering in the ‘here and now’ and does not have the luxury of time to wait for the day that things will change and the situation will get better?

This April during my visit to Lahore, Pakistan, a country lacking severly in resources for special needs individuals,  once again I encountered this dilemma. What could I tell parents who were not as lucky as I was to move to Singapore just as my son was diagnosed with autism? Reflecting upon the situation I put together my thoughts in the following ideas which may be of some help to struggling families:

Expose and disclose

In my opinion the biggest disrevice that we can do to our special children is to isolate them from society. Not only do we deprive them from opportunities to learn from others, we also contribute to the ignorance of people from all sorts of special needs be it dyslexia or Down’s syndrome or autism and so on. Hence:

·      Take your child everywhere that you would your regular children.

·      Do not make excuses for your child’s different behaviour instead explain to others why he/she behaves or not in a certain way. Stop hiding yourself and your children!

·      Form social skills groups with siblings of special needs children.

·      Invite a special need child to play with your regular child and vice versa.

Educate and advocate

There is no moving ahead if we do not understand what it is that we are dealing with. Therefore, thoroughly research your child’s condition. Most of us have access to the internet if not to actual physical resources. Read and research treatments, therapies, latest developments and more importantly share this information with others. Not just with other parents in similar situations but with your family and beyond. Also make presentations in mainstream schools and do talks in social gatherings. Make others listen!

Learn and train

·      Take online courses to educate yourself and others.

·      Connect to international experts and try to get them to conduct workshops in your country.

·      Create a forum  to collect funds for training yourself and other dedicated individuals.

Most autism resource centres are created and run by a groups of concerned parents and are excellent resources for others.

This is just a start of course but it is critical because a few very significant things will happen. You would have created a united front with others in a similar situation. You will learn from others and draw inspiration from each other. Not only will you push each other to action for change but also provide emotional and perhaps financial support that you or the other individual may need.

This April, in Lahore, I held a book reading in a centre that provides therapy to special children. I read from my memoir ‘Wrapped in Blue’ where I talked about my son, his autism and our journey together. Of the 70 plus guests at the talk,  barely any parents of the children who avail services at the centre came to the talk.

I was told by Mo’s therapist once, “we can only do 20% of the work for your child, the rest is up to you”! Ladies and gentlemen, the choice is yours!