Mo would like an easy job please!

It's been a while since I have blogged. I seem to be running out of topics and also I am not sure what you like to read about since you hardly ever comment. Anyway today I just have to share these gems with you, these jewels that Mo left me with before he went back to school in England. Like I have said a million times before, I am perpetually amazed by the beautiful minds that our children have, so innocent, so unique. So here goes:

Gem # 1

Me: Mo do you want to get married in future?
Mo: Maybe...(after some thought) yes.
Me: But you don't really talk to any of the girls in school so then how will you talk to your wife?
Mo: Well I will need a supervisor to help me communicate and teach me how to talk to my wife.
Me: Ummm okaaay...we'll see what we can do.

Gem # 2

Mo: When I was young, I used to think God was cruel.
Me: Why?
Mo: Because he gave me difficulties.
Me: But Mo he gave you so many strengths as well.
Mo: Yea. But I am over that part of my life.
Me: Which part?
Mo: I have grown out of autism; I am not autistic anymore.
Me: But there is nothing wrong with ... (cut off by Mo abruptly)
Mo: I said I am not, so I am not... OKAY!

Gem # 3

Mo: Mama when I come back to Singapore I want to do a job, an easy job (repeat x10)
Me: Okay Mo we will find you an easy job
Mo: But what if I can't do it? What if i get kicked out? I am stressed!  (repeat x10 agitated x100)
Me: Mo we will figure out something...
Mo: Noooooo you want me to be a couch potato and beg my brothers for money....I want a job BUT I DON'T WANT IT TO BE HARD!

Dear Singapore,

Mo is coming back to you next year. You better have an EASY job ready for him AND a wife with a supervisor in tow!

Sincerely,

Mo's mom.

Identity formation in children with ASD: are you a cat or a horse?

Today’s blog is in answer to a query received by me regarding how to facilitate identity formation in a 13 year old with autism.The teenager in question, lets call her Penny, has severe challenges with theory of mind i.e. relating to/understanding another persons state of mind and responding to it appropriately. Hence Penny frequently misreads tonal variations in others speech, such as when she says to me, “ Ms. Huma why are you screaming” and/ or “don’t make fun of me”, when I am only trying to explain something to her in a deliberate tone. Another example of Penny’s struggle with appropriate social skills is when she made a loud comment about a child’s oversized teeth and called him ‘bugs bunny’ on his face, not realising how he would feel. On being told that her comment had been hurtful she insisted that she was only telling the truth. This is also referred to as ‘mind blindness' and is typical feature of the Autism Spectrum Disorders found in varying degrees in individuals with autism.

Penny goes to a mainstream school where owing to her brash and self-focused attitude, forming friendships with other children is a struggle. She has expressed her loneliness in school and helplessness in relating to others through her artwork in the art therapy sessions that she comes to me for once a week. Judging by my communication with her, it is evident that just as Penny lacks insight into others, she has very limited awareness of herself as well. 

Penny is at the cusp of what Erik Erikson, in his theory of psychosocial development,  calls the stage of ‘identity vs role confusion’. According to Erikson’s lifespan theory of development this stage lasts from 12-18 years of age (adolescence) and is crucial for identity formtaion. During this time, youngsters are trying to gain independence, relationships with peers become very important, and fitting in with others are the main goals of this period.

But in Penny’s case, her diagnoses of autism puts her in a very precarious situation where  her chances of achieving success in the aforementioned psychosocial stage of her life are hugely challenged by her condition. Failure to develop a healthy sense of identity may put Penny in danger of developing a low-self esteem and lack of confidence which can lead to a sense of failure, isolation and perhaps even depression.

So how to help Penny develop: self-awareness (who am I?), acceptance of the self (I have challenges that many others don’t) and goals for her future (I also have many strengths that I can build on).

Below are a few ideas that I would like to share with you. As an *art therapist I would incorporate the following in my sessions but the idea behind each directive can be adapted to other modes of interaction such as  games, social stories and role playing etc.

•       Draw yourself as an animal/animals. What qualities or weaknesses within the animal/s do you associate with?

•       Divide a paper in quarters. Draw yourself as a child in one1/4, as you are now in the next,  how you see yourself after 10 years and then 25 and so on.
• 
  
•       Draw a self portrait of yourself on one side of the paper and on the other how you think others see you.

•       Draw yourself as an animal, plant or object in an environment.
• 
  
•       Draw all the things you like about yourself in a circle and the ones that you don’t like outside the circle. Now transform one of the things that you don’t like into something that you like.

 The above directives could help Penny gain some insight into herself by tapping into her subconscious through her artwork and then analysing it with her to help her with self-awareness. Frankly, these exercises could work for anyone, you and me including but especially for Penny who may be more visual than auditory as most children on the spectrum are.

All stages of life are interdependent and we hope that all our children pass through each successfully, but as parents of special needs children, we know that the effort that we need to put in is significantly more at each stage. Hence, educate yourself  in order to empower yourself and your child to conquer each and every stage. Penny or your child or mine may never fit in with others or have friends to hang out with,  but  they can face all of these difficulties if they are proud of and believe in who they are . Instead of changing them to become ‘us’ let’s celebrate their differences. Yes, we must equip them with skills that we all humans need to live in society but let’s love them for who they are right now and not what we want them to become.

*Art therapy can only be conducted by a qualified art therapist.

"It's a long story..."

Osman and I have decided that Mo will come back home to Singapore next year after he finishes school in England. I apprised him of this plan during his May holidays. Mo on the other hand, wants to go to college in England as according to him his classmates are going to go. However, I told him that we, his parents, felt strongly it was in his best interest to return to Singapore, find a job and settle down. The idea of a job  in Singapore was the carrot that I dangled knowing full well that Mo would acquiesce fairly easily  to the plan. And he did, so much so that he declared with pride, "my friends at school are going to be so jealous because I will have a job". When I reminded him that they too would eventually find jobs he declared "yes I suppose so, but first they will go to college. I can't go to college because I am more special needs than they are". Taken aback by his comment I probed Mo for an explanation to which he replied, "it is a long story", meaning I had reached a dead end and was not going to get my answer. That same day he told me,"I am tired of being surrounded by autistic people, I want to be around normal people". This is not the first time he has said that. In fact a couple of days ago he saw two blind people in the London underground and declared, " I don't like seeing people with disabilities, they give me the creeps"!

Mo's attitude pained me immensely. I began to question myself and my upbringing of my children. I, who claimed to be an advocate of special needs individuals, could I possibly have passed down the 'wrong' ideals to Mo? If not consciously then sub-consciously had I or Osman  encouraged a dichotomy between 'normal' vs' 'abnormal' in his mind? Looking for answers, I rewound my memory over the past 15 years and all I could remember telling my kids was that there is no such thing as 'normal'. Everyone is 'different' and we all have our challenges. Differences must be celebrated and not scorned. So then what had gone wrong and where?!

As I teetered between reflection and hypothesis I came to a possible conclusion. Although Mo gives the impression that he has a significant degree of awareness about his diagnosis of autism, he openly says that he is autistic,  I don't think he sees himself as any different from stereotypical's. He acknowledges that he has difficulties  but as far as his self concept is concerned he believes that he is no different from his brothers. Does it mean that he is in self denial? Or is it that he is not able to perceive himself from another's point of view? Whatever the case should it be viewed as a good thing or not such a good thing? Also could this be a contributory factor to his attitude towards people with disabilities?

Here are my thoughts on the above. Given that Mo is autistic, there is a very high probability that he lacks self awareness and by default is in denial. His teachers are working on his self concept but it is a goal in progress. I believe it is critical for him to accept that he is different, embrace the difference and celebrate it. Once he is able to do that he may become more accepting of others who are different from the norm by virtue of association or empathy.

I believe that Mo's early schooling has a big role to play in his perception of himself and others. Till grade 6 he was in mainstream school where he was pretty much the only special needs child in his class. Inclusion benefitted him in many ways but the lack of exposure to kids similar to him probably created a template of what is normal and not normal in his mind. Henceforth he began to categorise people into normal and abnormal categories based on that template. Had he mixed with both stereotypical and special kids in his primary years this distinction may not have been so black and white. He may have grown up accepting the differences as a norm rather than having to label them.

It boils down to the fact that exposure and integration are key elements to an inclusive society for individual with special needs. If our children grow up amongst individuals who are different physically or mentally, they will embrace the differences and not shun them. Then labels for mental illnesses and disabilities will perhaps only be use to define  symptoms and not a be viewed as a stigma. Just my thoughts on the subject...

More powerful than the bully!

Tia was a 13-year-old girl and Leo an 8-year-old boy. Both had autism and came together once a week for art therapy. Their relationship had come a long way in that they were able to work together on the same piece of paper in their own distinctive styles which was not the case when they first began. Eventually, they completed each others' work, crossed boundaries that were at first rigid and guarded, exchanging comments and sharing stories.

Slowly the dynamics of this little art therapy dyad managed to open up the fiercely protected emotional world of Tia and Leo whose artwork began to shift from the literal to the metaphorical. Individuals with ASD find it difficult to express emotions due to the abstract nature of feelings. Masters of literal representation, when it comes to symbolic expression, they can be extremely challenged.

In one particular session, both Tia and Leo were given a directive to draw each other. The goal was to encourage thinking about the other, beyond the self. After they completed their artwork, both children were asked to talk about their images. The conversation led to individual likes and dislikes and Tia shared that she hated was being bullied in school. She explained that she was pushed around by boys in her class who called her 'lazy'. Spurred on by Tia's sharing, Leo, who was usually very defensive and emotionally reserved, declared that he too disliked being bullied in school and spoke about his experiences. 

Tia and Leo's artwork

The above disclosure from both children led to the golden opportunity to express and address a fear-inducing occurrence in their lives. At times even though circumstances may not change, our perception of the circumstances, how we internalise and assimilate them in our memories can change. Hence, Tia and Leo were asked to draw the bullies, giving them a tangible form within the safety of the art therapy room. Both children made images of their respective bullies (see figure) and were then asked to contain the bullies within boundaries. The idea was to literally and symbolically imprison the bullies within the boundaries and take away their power. As the image shows, Tia and Leo drew substantial walls around their bullies, pointing out to each other where the walls needed reinforcement. 

The session was a wonderful illustration of how joint art therapy sessions encourage open sharing and mutual support between children. The artwork acts as a buffer to process difficult and threatening emotional content while the therapist provides the containment and direction required for transformation and growth. 

The Lion King of Ventnor!

A couple of days ago I received an email from Mo’s care staff about an ‘unfortunate’ incident that happened over the weekend in Ventnor, the tiny coastal town on the Isle of Wight where Mo goes to school.  Mo has now earned ‘Level 2’ independence meaning that he can go into town by himself unaccompanied or shadowed by his care staff. This feat was highly anticipated over the past year and once surmounted was hailed as a huge stepping stone, a feather in Mo’s cap up until two days ago when it was threatened by a couple of hooligans who happened to be on High Street Ventnor the same time as Mo.

Mo had gone shopping for his toiletries to Tesco and in his words “mama there were these hooligans on the street; one was riding a motorbike and tried to hit the other on his face. They were making a lot of noise and then one of them called me a midget”. Apprehensively I asked Mo “what did you do, were you scared?” to which he replied, yes I was scared but I went into Tesco, bought my body soap and when I came out they were still there but I just walked back to school”. Infuriated at the goons behaviour and hurt for my son I asked Mo whether he would like to be shadowed again into town. Quite honestly I was hoping he would say exactly what he did which was, “ Not at all!” Suddenly the hooligans became transformed into pathetic little mice and my Mo became the lion king of Ventnor!

The point of sharing the above anecdote is this: when you raise your children to be proud, self- respecting individuals mindful of their weaknesses and cognizant of their strengths, you are in fact empowering them with the confidence that you have passed onto them as loving and validating parents. Despite Mo’s enormous challenges, he has the spirit of an angel and the will of a fighter. Had he been sidelined, pitied and underestimated would he have coped so well with the aforementioned event? By all measures he should at least have been somewhat shaken! But when I spoke to Mo the day after the incident it was as if he didn’t give a hoot. In fact I was told by his staff that he had been singing through the weekend. Bravo Mo, keep on believing in yourself, we are with you!

                        “It is not the strength of the body that counts, but the strength of the spirit.” 
                         ― J.R.R. Tolkien

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!