Huma's blog: reflections on autism, art therapy, parenting, mental health issues and all about Mo!

Tuesday, January 15, 2019

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' 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. 

Sunday, July 22, 2018

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.

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Tuesday, May 15, 2018

The 'M' word nobody wants to talk about

I had the pleasure of meeting with an old colleague today, after many years. While we were catching up on times past, we happened to chance upon a topic about which we both share very similar views.  The question I am referring to is one that most people are either shy to discuss or wish did not exist. However, the fact is that the reality of the ‘M' word or dare I elaborate…the phenomenon of MASTURBATION within the context of children with different needs, cannot be ignored. The reason why I have capitalized the word is not to cause outrage or evoke disgust but to emphasize that it is an act that most males (at least) indulge in (please note that I said most not all) and that it is NORMAL to do so. I am not aiming for a religious or philosophical debate here, simply stating what is factual. Then why is it that when it comes to our children with differences, developmental or physical, we expect forced abstinence, denial and shame the subject? Why do we stigmatize a natural drive that is considered normal for neurotypicals but unacceptable for the neurodiverse?

I will not deny that when our children with different abilities are going through puberty, masturbation can pose many challenges. For obvious reasons, it is an act that calls for extreme privacy, and without question, no parent wants to witness their child engage in it or exhibit it. Unfortunately, with our special children a lot of times the discretion that we ideally desire, is not possible but that does not mean that the event cannot be handled sensibly. 

Instead of getting rid of the so-called problem (which it is not because it is normal) there are workable solutions to the issue. I found a solution that worked for my son, and I am confident that with the help of empathetic professionals and supportive parenting so can others who are facing the same dilemma.

In my case, I set specific boundaries around the act for my son who was allowed to indulge in it in a specified room beyond which there were consequences. With a few hiccups initially, he began to understand his limits, and we found a resolution to the problem.

Imagine the child whose sexual drive is suppressed continuously and finds no means of satisfaction? It is highly likely that the frustration will manifest in inappropriate sexual behaviours and/or acts of anger and aggression.

There may not be such a thing as a perfect solution, but there is always a way of handling what may seem like an insurmountable problem provided there is acceptance accompanied by perseverance and compassion.

Suggested reading:

Wednesday, March 7, 2018

Let your child's art do the talking!

When I tell people that I am an art therapist, more often than not I get a puzzled look followed by the now familiar question “What does that mean? Do you teach art?”. By now I should be miffed by this recurrent inquiry, but I am not because I get another opportunity to talk about my favourite subject. Moreover, every time I talk about it, I realize what an amazing thing it is to be able to achieve mental well-being through art making even if you have no artistic skills. That is why art therapy is for everyone from a child who can make marks on paper to an elderly person who may not be able to do so due to old age or illness.

All individuals with any level of ability, emotional or mental need or desire for mental well-being can do art therapy. It can be done individually, as a family and in groups. The only prerequisite is the will to discover, heal and learn with a trained art therapist who is there to guide you through the process of art-making and healing.

I work with children and adolescents with diverse needs. Some may have developmental differences, some are experiencing emotional ups and downs, others may have familial problems, issues at school or in some cases serious mental health concerns. An art therapist can address the individual needs of each child by tailoring the session specifically to them.

When I work with a child with autism, I am not only concerned with their emotional well- being, but I am also aware of their sensory needs. It is not possible to focus on the mental health of a child who is not well regulated. Therefore, I use art materials to induce sensory modulation alongside the emotional work that is required. Engaging with art materials allows the child an opportunity to achieve sensory regulation as well as provides them with an opening for communication and expression. For a non-verbal child or one who has difficulty communicating this can often be a liberating experience.

Sometimes I get a defiant teenager who is aggressive at home and unhappy at school. The parents are at a loss because their child will not talk to the school counsellor or the talk therapist. They come for art therapy as their last resort. I tell them “the good news is, that your child does not necessarily have to talk in the session”. All they need to do is be present and the rest usually follows. The child who may be reluctant to make art, in the beginning, is usually drawn to art materials and will eventually start engaging with them and the therapist. Sometimes, if there are familial issues, the parents or parent will be asked to join in the sessions. Once again, a conversation may not be necessary as the artwork can do the talking.

It is the process of art making that lies at the core of the art therapy approach. The art product is not judged for aesthetic quality; there is no right or wrong you can do. The art therapist provides the safety and containment needed to confront difficult and sometimes very painful emotions. Art making can tap into the innermost aspects of the psyche that words may not have access to. Children especially, cannot be expected to know why they are feeling depressed or angry or defiant. However, the images they make can tell us pretty much what is going on.