Saturday, December 19, 2015

Mo's boxes!

Ventnor, Isle of Wight
And there I was once again in beautiful Ventnor, tranquil and pristine, cozily perched on a cliff facing Ventnor Bay, cloaked in the wintry hues of blue and grey. According to Charles Dickens “the prettiest place I ever saw in my life”.

It has been almost four months since I last met Mo, so I could hardly wait to see him upon reaching the Isle of Wight. Once in Ventnor I quickly deposited my luggage at the B&B where I was staying  for the night and and rushed off to St. Catherine's to meet my boy.

The steep climb up Grove Road that leads to Mo’s school building is flooded with emotionally charged memories for me. The first time I walked up that road was when Mo spent two nights at the school as a trial leading up to his admission.The next memorable walk up the slope was when I dropped him off to school as a new student. You can only imagine what that was like! Thereupon followed numerous picks and drops during half-term and term breaks. Today was another such trip, this time to bring back Mo to London before Christmas.

I was let into Mo’s boarding house by his classmate and walked into the common area where he was sitting with his care staff wrapping Christmas presents for us, his family. Mo stood up when he saw me enter, his expression changing imperceptibly, hinting at a mix of happiness and excitement that he was probably feeling. Before he could say or do anything I gave him a hug. Only, Mo was not hugging me back, in fact he seemed to want to get over the act as quickly as possible. I immediately picked up on his discomfort and let him go. That instance, Mo’s classmate Nikki entered the room and excitedly began introducing herself to me. Extremely enthusiastic at seeing a visitor at school Nikki offered to show me her room and I simply did not have the heart to say no. I went along with Nikki whilst Mo quietly slipped away to a sofa on one side of the room where I found him sitting on my return.

Just to make it clear, I was not in any way offended by Mo’s distant behaviour. “Oh my god he doesn’t love me any more, Mo has forgotten me!” were not my thoughts at all J. For Mo’s reaction did not come as a surprise to me. It just confirmed my hypothesis about Mo and his ‘boxes’.

Mo’s ‘boxes’ live inside his head. They help Mo organise his environment into neat little categories which assist him in figuring out the world outside his head. Following are a few of the ‘boxes’ that I have managed to figure out so far:

The Family box
For Mo family consists of his  brothers his father and me his mother.  Every one else can go fly a kite! Well not exactly. Grandparents and cousins were in some other category for a long long time till  years of insistence and long winded explanations by ‘ ‘Mo’s family’ finally bore fruit and the latter were allowed the privilege of entry into the family box. At least outwardly Mo agreed to let them in perhaps just to get the rest of us off his back.

The School box
Mo’school is in a very exclusive box. The fact that Mo was not entirely comfortable to see me in St. Catherine’s was because I did not belong in that box. I had crossed the boundaries of the family box into the school box and that had disturbed the balance of the boxes in Mo’s head. Hence, throughout my stay at the school, I could sense the poor chap wanting me to leave. Alas I had not travelled 10,000 miles for nothing. I had meetings with the staff at school and I was adamant to have them. Anyway, once Mo and I left the school for London, he was back to his usual self “Mama I adore you”… I had returned to my little box and restored the balance.

Likewise, it is inconceivable for Mo to think of Murad or Mikail, his younger brothers, as his friends as well as a brothers though Murad at least has played the role of one since forever. But Mo will not allow the possibility of mixing the two relationships and I have left it at that.

Nationality and Religion boxes
This box is a funny one. Hence if you are Pakistani, you have to be a Muslim and if you are Australian or Italian (basically white) you can only be Christian. There is simply no choice in the matter! Since Mo has spent most of his life in Singapore this box could potentially present a huge dilemma for him due to the multi- cultural aspect of the city. However, Mo’s figured it all out. Thus, there are only Indians in Little India and Chinese in China town and you can hit your head against the thickest wall and turn yourself black and blue but this will not change!  In Little India, Singapore, the following conversation was overheard x100.
Mo: “There are only Indian’s in Little India!”
Murad pointing to someone:  “Look, look Moeez,  there is a white person there, look!”
Mo shaking his head firmly: “No, there can only be Indians in Little India,” very conveniently ignoring the many other non Indian faces in the crowd.
Murad almost about to tear his hair out: “MOOOOOOOOEEEZ!”

Have I told you before that Mo is one of a kind?

Saturday, December 12, 2015

The Emotion Cups

A common misconception that existed not so long ago, about individuals on the autism spectrum, was that they were not capable of feeling emotions. In time that assumption, which was to a large degree due to the way individuals on the spectrum process emotions, was proven to be incorrect. Current research continues to be ambivalent about the subject. Below is a link for those of you who are interested in further reading (a bit academic but I thought it was quite comprehensive).

I have written about an occurrence in my book ‘Wrapped in Blue’ where Mo aka. Zaki makes a connection between his tears and the emotion of ‘missing someone’ which occurs when his mother Zoya aka. moi is dropping him back to school.

“Oh my god, I think I am about to cry. I am really going to miss you mama” says  Zaki who is 17 years of age at the time. He has used the phrase “I miss you” many times before in his life possibly without understanding its pragmatic significance. Therefore, the latter incident is a milestone in Zaki’s emotional development and stands out poignantly in his mother’s mind.

Linked to the subject of emotions and ASD, just recently I had the occasion to work with an 8-year-old boy Dany* who had autism, whose mother brought him for art therapy so that he could develop insight into himself, let go and learn to express himself through art. I could relate to her completely as I too wonder often about what goes on in Mo’s head. What is he thinking and feeling at a particular point in time? How does he perceive certain situations?

Anyway, Dany is an extremely bright and articulate boy who struggles with pragmatic language skills. My goal was to gauge where he stood in terms of recognition of emotions in general and also within a personal context. Hence, I want to share with you the following activity which was based around that objective. I thought it was fun for Dany and quite powerful too.

The emotion Cups
I placed 4 ‘emotion cups’ (as Dany named them) with faces depicting happy, sad, afraid and angry emotions drawn on them. Dany was asked to choose a colour for each of the emotions (we had previously done another activity on identifying colours with emotions) and paint pieces of macaroni with the colours of each emotion. He was then asked to put macaroni pieces in the cups corresponding to the emotion he felt/associated with most of the time. Thus, more macaroni in the happiness cup relative to the sadness cup meant that he was more happy than sad and so on and so forth with all four emotions. Dany started the activity only to stop after a few seconds and asked me to add another cup. “I am none of these cups most of the time,” he said. “I want you to make a cup that looks like this” and then he made a straight line across his lips. I said, “you mean serious?” “Yes”,  declared Dany “I am serious most of the time!” Taken by surprise I added the ‘serious’ cup and Dany completed the activity. After he had filled up all the ‘emotion cups’ and lined them up, starting with the most to the least emotion he felt, we discussed each one in relation to Dany’s life. The session finished with another activity around generalising emotions and so on. Subsequent sessions will focus on further exploration about the same, encouraging Dany to experiment with his emotions through colour and form.

Dany’s mother was surprised to learn that he had so much self-awareness. Hopefully, Dany will continue to explore/express himself through his artwork and enjoy the process of discovery. 

Sunday, December 6, 2015

What did I do to deserve this child?

I often ask myself, “what did I do to deserve Mo? Why me? Why?” Now before you jump to random conclusions about my questions and just in case you are thinking, “OMG how can she talk like that about her son, what a #@*%^%$#”, please bite your tongue! Now read the questions again, this time with positive connotations and then proceed to read my answer below:

 Ans: “Frankly I don’t know what I did to deserve Mo but what I do know is that God really loves me for He gave Mo to me”.

Still the skeptics amongst you may continue to think “Oh , she is just saying it to fool herself. After all what is the blessing in having a special needs child, a child who will never outgrow his autism, perhaps never be able to live independently? Surely she is still in denial, tsk, tsk”!

Dear skeptics, below are just a few reasons why I am so blessed to be Mo’s mother and I want to talk about them because sometimes, like today, I have this overwhelming need to share my gratitude with others. Hence, the following:

Blessing # 1: Through Mo I have learned to look at the glass as half full rather than half empty; to be grateful for the blessings that but for him I probably would have taken for granted such as: the act of spontaneous breathing, deep and unhindered; the ability to tie my shoe laces without thinking; the ease with which I read, write and remember things; the way I can tell instinctively what the other person is thinking or feeling and so much more.

#2: Because of Mo I continue to experience immense joy in the simplest of things such as: a song sung completely off key, a joke repeated a dozen times with recurrent delight, a cricket ball pitched straight at the batsman, a word used for the first time in a sentence and much much more.

# 3: Thanks to Mo every time I come across someone with a disability or a difference I feel love and respect, a warmth  that comes from a vicarious connection that transcends ordinary bonds.

# 4: By means of Mo I have found the purpose of my life through my work. He has taught me how to give without asking, be patient in adversity, believe in miracles and persevere tirelessly.

So when the question that I asked at the beginning begs for attention I simply repeat the answer that makes the most sense to me “God loves me for He gave me Mo”!

Monday, November 30, 2015

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!

Friday, November 27, 2015

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.