Mo's Angels

The other day I read a comment in the Straits Times made by the veteran diplomat Mr Tommy Koh that Singapore is a "first-world country with a third world people". His comment was based on the perception that is shared by many that Singaporeans are unkind, selfish and impolite in general.  Mr Koh added, "I love Singapore. I would die for Singapore. But are we perfect people? We are not,". But then, are any people perfect? I would think not!

Raising a differently-abled child anywhere in the world is the litmus test for gauging the civility and compassion of a nation. My intention is not to debate the third worldliness of Singaporeans rather it is to share my two sides of the story in relation to Mo, my 22-year-old son with autism.

Mo is a Universal Studios and Orchard Road regular, meaning his two days off from work are spent either browsing/hanging out on Orchard or riding roller coasters on repeat in Universal Studios. On occasion, he has come across shopkeepers who have threatened him with calling security because he was staring at some expensive merchandise for too long or for instance when once he was trying out too many pairs of glasses, he was reprimanded and asked to leave. Unable to comprehend the reaction of people towards his naïve behaviours, Mo returned home perturbed, questioning his actions and why they were perceived as inappropriate. Despite my endless explanations, understanding the intricacies of appropriate vs inappropriate social behaviour continues to be a struggle for Mo. I suppose life will teach him through trial and error some of its complexities, as he continues to navigate its ups and downs. However, the reason for my writing today is not to highlight the not so pleasant encounters that Mo has had in his life, rather it is to acknowledge the angels that he has come across this past year.

Mo landed a job in McDonald’s last year thanks to Yahya the ex-manager at McDonald's Alocassia Serviced Apartments. Yahya received Mo with open arms and trained him patiently despite his very busy schedule and lack of resources. Mo was given the job of drive-thru cashier where at

the beginning he made mistakes sometimes resulting in a cash deficit but the staff at Mc. Donald’s supported him and were instrumental in the completion of a successful and happy one year at work (thank you Adila, Clarence and Mohan among others). When recently, Mo left Mc. Donald’s, because according to Mo “I enjoyed working in Mc. Donald’s but I have to upgrade my skills” his managers contacted me to express their affection for Mo and regret at his leaving. My heart swelled with pride and gratitude.

 

Once again two more angels have appeared in Mo’s life at his new job at Starbucks. Royston who is the manager of Starbucks in the CBD picked up Mo’s enquiry and offered to train him. When I met him and Mon (the other manager who Mo will be working under) I felt that I was entrusting Mo into safe hands. Both managers welcomed Mo onboard with extreme warmth and encouragement. Mo is super excited to work at Starbucks and not just because he gets to have his favourite caramel Frappuccino every day. As for me, I am beginning to believe that Mo’s dream of opening his own café one day will really come true thanks to some very first world people in this first world country.

The regressive mindset.

I couldn’t be prouder of Mo who has a 3-9 pm job at McDonald's as their drive-thru cashier. Mo is fulfilling a dream that began when he was 11 years old and was actualized at 21 years after loads of hard work coupled with immense anxiety and self-doubt brought about by his autism. “You did it!” I tell Mo, but it does not end there because Mo's dream is already growing bigger as he continues to dream of more.

However, this is not what I really want to talk about here. It is what my second born Murad, who is 19 years old, said to me the other day. He shared that his supervisor at a local concern here in Singapore asked him how he felt about having an older brother with special needs and how he (Murad) was surprised, almost offended that such a question would even be asked. “As if people with special needs are not like you or me!” Murad stated. Quite honestly, had I been asked the same question about having a child with special needs, I don’t think I would have shared Murad's reaction, in fact, I would have expected the question and then gone on to talk about my journey and so on. Nevertheless, Murad is a child who, by virtue of being raised in a home where differences are not labelled as ‘inferior’ or considered an ‘affliction’, rather as challenges that must be dealt with and overcome, has grown up without prejudice against people who are differently able. I was delighted by Murad's comment that day and felt reassured that my husband and I had managed to raise our children without the preconceptions that he and I had grown up with.

Ready to go to work!

I am in no way downplaying the hard work and the struggles of caregivers of differently abled children and for that matter the carryover of the challenges to the siblings, but it is the perception of these challenges that precipitate stigma, discrimination and bias. This perception is mediated through language, beliefs, attitudes, government policies and so on.

As an example take our everyday language through which we might be unsuspectingly passing on messages that can have long-term ramifications for future generations. With regards to how we refer to differently abled individuals, I found an interesting blog that talks about whether to call a person with autism 'autistic' or 'someone with autism' https://www.parents.com/health/special-needs-now/should-we-say-with-autism-or-autistic-heres-why-it-matters/. Though this may not come across as a critical debate, it begs consideration and mindfulness about how we may be influencing people around us.

Back in Pakistan, I continue to hear words like ‘retarded’ and ‘pagal’ or ‘mad’ referring to individuals with special needs or mental health issues and it irks me immensely. Whereas earlier I would reprimand the use of such discriminatory language, I have changed my stance to bringing awareness to the sources of these deep-rooted biases and taboos that have nurtured centuries of regressive mindsets and dispositions.

I believe that firstly, the change needs to come from the very families and homes of differently abled individuals or those with mental health issues. As caregivers, siblings and friends, stand with your loved ones, speak for them and love them for who they are. Don't hold them back by not taking them to parks, malls, family gatherings and events just in case they might draw attention or censure. If you encounter offensive language or behaviour, take issue by educating and then advocating.

When Mo tells me that he cannot count money fast enough at the drive-thru and sometimes the customers complain, I draw his attention to the fact that in his first month in the job a customer wrote a wonderful note to McDonald's congratulating them on employing such a pleasant and polite worker. The charmer that Mo is, he often responds, "Thank you for raising me so well mama". However, for the future, I am preparing Mo to seek the understanding of dissatisfied customers by communicating his challenges to them so that he can stand up for himself. 

The paradox in raising a child with special needs

Mo bought a pair of sunglasses yesterday and he is loving his new look. I can tell they make him feel all grown up and super cool. Today, when his dad and I accompanied him on the bus, in order to familiarize him with the new route he has to take for his social skills group, Mo sat behind me, sunglasses and all, smiling broadly. Then, I heard him break into a song and suddenly my antennas went up. Who was he sitting next to? Would they think he was strange singing to himself? Would they judge or label him and so on and so forth? At once I turned around and whispered to Mo “you don’t sing in the bus” and the very next moment I chided myself silently “You’ve done it again Huma! So what if Mo is singing? So what if this is not the norm? Mo is happy, let him be, this is who he is. If the guy next to him finds him strange then that is his problem, not Mo’s’”!

Yet truly, is it really that simple? The fact is, it’s not just the guy sitting next to Mo’s problem, it’s mine too. I don’t want anyone, absolutely anyone to look at my son any differently than they look at me or you. I will simply not stand for anyone who will put my son down for being different and in case you are wondering what I will do faced with a scenario where such an occasion may arise, I have hidden fangs and claws that I will use to protect my precious offspring.

Then again, while I claim to celebrate Mo’s differences, I am also subconsciously and consciously trying to make him fit in with the ‘others’ or the stereotypical and therein lies the paradox and today’s incident, in the bus, made me reflect upon this conundrum. Is it because I myself am not comfortable with Mo being different or is it that I don’t want Mo to get hurt by others? I am going to go with the latter conclusion for truly it is Mo’s differences that make him the adorable bundle of love, simplicity, honesty and purity that he is. I am grateful for the joy as well as the challenges he has brought into my life and my family’s, for he has kept us grounded and thankful and honest. But Mo’s ego is fragile and he is vulnerable. He wants to be like his brothers and cousins and he does not want to be treated any differently. Yet he is different! So then, is there a solution to this paradox?

Indeed, there is and quite simply it is to embrace and accept differences so that they become the norm; so that parents such as myself feel safe in the knowledge that our special children will not be stared at, taken advantage of or thought of as any less than others.

It is Mo’s first day as a drive-thru cashier in McDonald’s tomorrow and I am nervous for him. He is so excited and stressed because working at McDee ’s, as he calls it, was Mo’s dream. Mo’s dream is about to come true but if he fumbles and falters will his dream turn into a nightmare? Will impatient customers be patient and respectful, and will his managers and colleagues treat him with understanding and kindness?

I am sending Mo off tomorrow with the counsel that mistakes are a precursor to learning, hence not to be afraid to make them. But my child is fragile and afraid as he is excited and hopeful. Thus, my counsel will be accompanied by constant prayers for this new stage in Mo’s life that could be a blueprint for his future.

For appointments with Huma for art therapy: go to www.colouredcanvas.net

Anything is possible!

It's been a while since I updated you about Mo but I think this news deserves to be shared for three reasons: firstly, because Mo has taken the first step towards achieving his dream (owning a restaurant); secondly, it has renewed my faith in humanity and finally, it gives me the opportunity to say one that, 'anything is possible'!!!! 

Mo returned to Jakarta in October 2016 after finishing school in England and we had about 8 months before we moved to Singapore in June 2017.  I was panicking about how I would keep him occupied constructively in the interim and Mo too was extremely stressed about his immediate and long term future. In fact there were many 'volcanic eruptions' soon after he bid school in England goodbye  and immediately after his return to Indonesia. Though I was very happy to have him back, I was certainly not happy to be the target of his outbursts.

That is when I had an epiphany and decided to deal with the situation head on. Mo's dream is to work and eventually own a restaurant, so why should he have to wait? Especially, since the past two and a half years in England, this is what we had been preparing him for and the natural progression would be for him to start working towards that.

Consequently, I decided to contact Alex (pseudonym), the owner of a popular resturant in Jakarta, to request an internship for Mo as a waiter. Alex, whom I did not know personally, responded to my email immediately and asked to meet with Mo. At the meeting he agreed to give Mo a chance because he believed that everyone deserves one and, mirroring my thoughts exactly, he added that "anything is possible".

Ready for first day at work

 It has been two months since Mo's been working at the restaurant and loving it. Initially, he was very nervous and totally stressed out that he would fail to perform and be asked to leave, but that is in the past. Now for the first time in his life, Mo wakes up on his own, gets ready for work without reminders (shave and hair gel and all) and is off to the restaurant on the dot. Also, for the first time he has (to my utter delight) started asking for pocket money so that he has something in his wallet in case he wants to buy a snack on the way back from work. He returns from work brimming with confidence and a sense of achievement. What more could I have asked for!

Alex says that Mo is improving everyday and slowly he is beginning to give him more work. Alex is Mo's angel in Jakarta and I hoping there will be others waiting for him in Singapore. 

I have said it twice and I will say it again 'ANYTHING IS POSSIBLE"! 

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.