In conversation with MO!

For those of you who have read ‘Wrapped in Blue’, my book about raising Mo, you already know that he is in a boarding school in England since last year. And to those of you who have not read it as yet…please do so J. Anyway, as part of this blog, I want to share with you what I am learning through Mo as he grows up in an environment that is providing him the kind of support that  I hope will help him achieve his potential. Of course all individuals on the spectrum are unique and different from each other and will have their own trajectory in terms of progress and growth, but we can learn from each and everyone of them.  Through our sharing about our kids we can gain further insight into this perplexing cluster of symptoms that constitutes ASD.

Being Mo’s mother I am always looking out for progress and signs of change especially since he is abroad. I continue to learn so much about autism through him, through the once a week Facetime that I manage to squeeze into his busy schedule.

Mo who is now 18 years old will soon be an adult and as such these are the years of his life that will determine to a fair extent his future, the path he will choose to follow in terms of his vocation and how he will achieve the goals that he has set for himself.

Below is a transcript of my yesterday’s conversation Mo:

Mo :“Mama why are we not going to Pakistan this winter?”

Me:  “Moeez because since you can’t travel by yourself we have to be with you in London and the holidays are not long enough for me to do a pick and drop to Pakistan. Do you think by next year you will be able to travel alone?”

Mo:” No I don’t think so”.

Me: “Not ever?”

Mo: “No I don’t think so”.

After a while:

Me: “ So how is it going with the visits to the town centre, are you able to go by yourself?”

Mo: “ No not yet. I am still being followed by Richard (his carestaff)”.

Me: : “Ok, a year and a half left before you graduate and then you will come back and live wih us.

Mo, freaking out, “ No no no I want to live here for ever”.

Me, a bit offended, “Mo you have to come back you know”!

Mo, resigning himself to the inevitable, “Okay, but please make sure I have a job. Okay mama promise I will have a job, okay?!”

Me: “Of course you will my darling”.

What really took me by surprise in all of this was that Mo has developed enough insight into himself to realise that independent travel may never be an option for him and my questioning him about it repeatedly did not upset him which is quite contrary to our past  exchanges. He is maturing into an individual who is comfortable with his weaknesses and cognizant of his strengths and though I am no one to put a cap on what he will or will not be able to do in future, his self awareness is essential for his self esteem and confidence. Before he left for England Mo was in denial of his diagnosis. The ‘I am not autistic” and “you’re embarrassing me by calling me autistic” phase began around his fourteenth year and quite honestly I was at  loss to deal with it. I wanted him to be proud of who he was because I knew that sooner or later he would have to face the fact that he is different from neurotypicals. But now I can sense Mo getting comfortable with his diagnosis and my last conversation with him is an indication of that.

During this very same conversation I asked Mo if he would like to write for my blog. The usually reply is a straightaway refusal. This time he has promised to think about it J

I am so proud of you Mo and I hope you continue to grow from strength to strength. My one of a kind, amazing son!

Listening to and validating your child

Have you come across a mother who laughingly reminisces about her son, “oh Mickey had such a bad temper when he was a child, he would kick doors when he got angry and throw huge tantrums; he was so naughty!” she says, inwardly gloating at her now grownup son who is married and has kids of his own? After all, kicking doors, knocking around a few punches and torturing the neighbourhood cats was no big deal really since ‘boys were going to be boys’. Usually after such episodes, Mickey would be reprimanded and told to go do his homework or focus on his studies. Eventually Mickey stopped misbehaving at home. Apparently he had outgrown his tantrums.

And what about  Tania who as a child would often tell her mother that she found it hard to breathe at times but mummy insisted that it was just psychological especially since the family doctor also confirmed that it was all in her head? After complaining to mummy a few times Tania decided there was no point in repeating herself, instead she began to avoid social gatherings as it was amongst people that her symptoms got worse.

Well  Mickey grew up into this very eligible bachelor, married a wonderful girl and they lived …. ever after? Only quite often little things make Mickey fly into a rage and when that happens he looses a bit of self control and may become abusive towards his wife. Of course he apologises after, only the poor girl doesn’t know what instigated the neurosis in the first place.

And Tania is now a mother and teaches at the neighbourhood school. She suffers from frequent palpitations, her chest constricts and she begins to feel dizzy till she pops a relaxant and the horrid feeling passes. She read somewhere that this awful experience is known as anxiety.

Now if only Mickey’s parents knew that when he was a kid he was angry because he was being bullied in school and kicking the doors at home helped lessen his frustration. And if only Tania’s mother had realised that her daughter was struggling to breathe because she could not keep up with her reading comprehension in school due to poor short term memory, perhaps life would have been easier for Tania and Mickey’s wife!

So is every angry boy a Mickey and every gasping girl Tania? Certainly not! Do parents have to be constantly on the look out for odd behaviours in their children? Definitely no! Paranoia breeds itself  and overly suspicious parents breed anxious children. But indifference to recurring aberrant or unusual behaviour can be harmful and procrastination to address it is neglectful.

There are many adults who fall into the category of individuals who have suffered from minor to major traumas in their childhood which were left unaddressed by their parents/caregivers knowingly or unknowingly. At times what is required is a little intervention which can have long term benefits.

It’s frustrating though to come across obtuse parents who procrastinate getting help for their children due to ignorance, denial or simply cultural taboos.The relatively soft approaches such as play therapy, drama therapy and  art therapy can be used for children in a non-confrontational way. As for those who may not have access to therapists, a communicative and understanding parent is by himself/herself a blessing. Listening to your children and validating their feelings is key to a happy healthy child.

What is trauma and what art therapy can do for you

 I am constantly inspired by the power of image-making. It never ceases to amaze me how creative expression has the capacity to tap into the innermost human experience that may be inaccessible to verbal expression. Therefore, the role that art therapy can play in the processing of and healing from trauma is hugely significant.

In the above context, I would like to talk about a client that I worked with a few years ago. 

I started working with Tasha (pseudonym) when she was 5 years old. At 3 years of age Tasha had suffered from horrendous sexual abuse at the hands of her father. Tasha who was now living with her aunt (the abuse had been reported and the father incarcerated) was brought for art therapy because she was unable to settle down and form an attachment to the latter. Tasha had no conscious memory of the abuse she had suffered many times, hence when asked who her favourite person was, she would reply, “my father”.

You may ask, what good could it have done poor Tasha to dig up her abusive past through therapy? Why not let the trauma remain hidden? To better understand why Tasha was brought for art therapy to process her trauma and how it helped her, let's take a deeper look at the aetiology of trauma.

Tasha's artwork

Trauma is a psychological phenomenon caused by a distressing and/or life-threatening event that can cause chronic anxiety or Post Traumatic Stress Disorder (PTSD) in the sufferer. Trauma can occur due to various reasons, the most common being: illness, accident, abuse, war, divorce, loss and so on.

Post-trauma the victim goes through various phases such as denial, anger, bargaining, depression and finally acceptance. This is also called processing the trauma or finding a resolution for it.  However, in cases such as Tasha’s, the trauma occurred in early childhood and was so severe that it became repressed or was wiped out from her conscious memory.

Unprocessed trauma can have long-term negative consequences, ranging from insecurity, emotional numbing, anger/aggression, addiction, self-harm and nightmares etc.  No matter what the intensity of the trauma or it’s cause it is advisable not to ignore its occurrence.

Research shows that when trauma occurs in childhood, its memories are stored in the right hemisphere of the brain that is pre-verbal and not accessible through language. Therefore, verbalizing the trauma is not possible just as happened in Tasha’s case.  In order to gain access to Tasha’s  memory  of her abuse it became necessary to tap into a part of her brain that was non-verbal where the trauma could be accessed without re-traumatising her. Hence she was referred for art therapy. In order for her to heal and to come to terms with what she had gone through, the traumatic memories had to be reviewed at a non-verbal level first so that eventually, they could be transformed into non-traumatic memories or contextualised in a way that would enable her to accept what had happened.

The time to process trauma depends upon its severity and it would have required many years of therapy for Tasha to come to terms with her abuse but at least coming for art therapy was a start. I was able to see Tasha for a few months before I moved on to another placement but I hope she continued on the journey that she had begun.

It is advisable to be vigilant around our families and children and attend to signs of anxiety and/or stress without brushing them aside. With children especially, it is critical to equip them with the knowledge of abuse/molestation and to inculcate in them trust and confidence to talk about these issues if and when they occur. Even though some of us may not have access to therapy or therapists, sometimes just opening up to a loved one and talking through things can be liberating and therapeutic.

To stimm or not to stimm

Silently he walks up to the lazyboy and fits himself snuggly into it’s seat in a foetal position. The pencil that a moment ago was just a thing to be held at all times suddenly takes on a new life. Mo lifts it up to his face and starts to flick it to and fro in close proximity to his eyes with both thumbs and forefingers deftly controlling it’s momentum. Suddenly he seems to enter a state of bewitchment. As he reaches a certain point in his repertoire his features contort to match the intensity of the movement.

“Stop it Moeez You are stimming too much!”  he hears a familiar voice rudely interrupting his ritual. Sometimes he stops for a few seconds to pacify the interloper, at others he has been heard saying “You tell me I am autistic. Autistic people stimm. Then let me stimm!”

Stimming or self-stimulatory behaviour to the on looker presents itself as a repetition of physical movement, sounds or objects. Common examples of stimming are hand flapping, rocking, head banging, squealing and so on.

 To the person with autism it is a self-regulatory mechanism that calms them down, makes them feel good by blocking out external stimuli which may be overwhelming to them and indeed free up some of their neural space to focus on other cognitive tasks.

The fact is that its not only individuals on the spectrum that stimm. You and I stimm as well! What do you think you are doing when you are tapping your feet incessantly during an interview or flicking your toes at night under your comforters to lull yourself into slumber? Us neurotypicals simply get away with our stimms because they don’t look odd or are not socially inappropriate.

I am all for teaching autistic children socially acceptable behaviour and of course one cannot allow their stimming rituals to compromise their safety and health but before we label them as ‘abnormal’ and ‘retarded’ (yes these words are still in use) let us try and enter their world for a few minutes where the texture of a shirt may perpetually feel like sand paper rubbing against the skin, the sound of the fan  comparable to a running chain close to the ears  or the movement of a swing seem like a roller coaster ride. Would one not be forced to engage in all sorts of ‘stimms”?

According to the Center for Disease Control and Prevention (CDC)  the prevalence of autistic children is 1 in 68 in the USA. That is a lot of autistic individuals amongst us. So last year, in response to my nagging him about his stimming, when Mo told me, “ Mama, stimming is a part of who I am,” instead of reprimanding him, I felt a huge pride in my son who had asserted his right to be who he was meant to be. In my eyes, that day my 5 foot 1 inch 17 year old stood a foot taller than me. 

Tribute to a best friend

From right to left: Moeez, Maahir, Murad and Mikail

The day Maahir called up Moeez and told him that he  was his best friend Moeez was over the moon. Now if If you ask Moeez who is his best friend he will say “Maahir”.

Reality is that Maahir is Moeez’s younger brother Murad’s close friend. Moeez who is older to both boys by two years (he is 18 yrs) is my eldest son and is on the spectrum.He like most children with autism has great difficulty in forging relationships with his peers. According to him, “I want to make friends but I just don’t know how”. Despite years of social skills training he still suffers from extreme challenges in this area. According to Moeez, Murad falls under the category of a sibling, therefore he cannot be a friend. Then how come Maahir fit the bill?

Maahir is a close family friend’s son who has grown up with my boys. He is a sensitive and loving child and as far back as I can remenber has gone the extra mile to show Moeez genuine affection and sensitivity. Moeez has been a part of almost every playdate between Maahir and Murad without any objection from either boy. In fact at times, Moeez is the one who has to be compelled to join in as according to Maahir, “It’s not the same without him”.

The truth is that during the playdates Moeez rarely initiates an activity. He will engage with the boys at will and withdraw from them similarly. There have been days that he has shown complete lack of interest and has to be coaxed to be a part of a game or a conversation. However, his erratic behaviour has never had an impact on Moeez’s relationship with Maahir who is as caring and embracing as always.

My wish is that for every child with special needs, there is a Maahir out there as his/her best friend and a Murad as his/her brother.