Autism – Challenge Accepted

A Heartfelt Note during Autism Awareness Month

Diagnosis and the journey thereafter

It has been nine years since my son was diagnosed with autism. He is a non-verbal autistic child on the higher end of the spectrum, and life has never been the same since then.

When my son started school at 2.5 years old, he was not speaking. We thought that the challenges of living abroad without extended family support and the demands of our daily routines were causing a speech delay, which is a common phenomenon in children. We hoped that he would develop new social contacts and skills that would encourage him to communicate more explicitly, but a few months passed, and there was no change. He couldn’t mingle with other children and was always sitting alone in one corner of the room while other kids played in groups.

Concerned about my child’s development, I sought expert advice. Before getting an appointment with the child development and psychological department of the hospital (which involved a long wait), I did some online research and discovered that my son had all the classic symptoms of autism, including delayed speech, little to no socialization, arranging toys in a linear pattern, flipping hands, no response to his name, no eye contact, high sensitivity to people, noises, and lights, etc.

I knew it was time to seek professional help to have a clear picture, but I still hoped I would be proven wrong. Unfortunately, the diagnosis confirmed my intuition, and it broke my heart despite my preparedness for the worst possible outcome.

https://www.autism.org.au/what-is-autism/?gclid=CjwKCAjw6IiiBhAOEiwALNqncT5m92FjCsp1AMYfkCZztgBB5qQsLwe2KyaF7kROXP72KaGyfeI4sRoCqUwQAvD_BwE

We faced a challenge by fate, and we had no other option but to catch it. A shortage of schools catering to special needs kids is common in Brussels, and our son’s first disappointment after being diagnosed was the rejection of his place in a regular school because the teachers were not trained in the special needs care required of autistic children. We had to pull him out of the school immediately, and we couldn’t blame the teachers for their honesty.

Fortunately, my son got a place in a day hospital that functioned like a daycare or a school for kids with different needs or issues. Autism was one of them, and before my son started his next school in 2016, he continued in the day hospital for two years. That was a great help indeed. By the time he got a place in the special school, he was toilet trained, understood how to use pictures for communication (PECS – Picture Exchange Communication System), and could use a word or two to communicate his needs.

https://nationalautismresources.com/the-picture-exchange-communication-system-pecs/

In 2016, he got a place in a primary school founded specifically for kids with Autism Spectrum Disorder. It’s been nine years since then, and the journey continues. We are still battling his agony of being unable to explain inner frustrations, high sensitivity to loud noises, and inability to concentrate for long periods on any particular activity (which impairs his learning abilities to read and write). There have been numerous occasions when his pent-up frustration would turn into a  meltdown, and he would end up shouting, crying, and hitting himself. At that moment the only thought that crosses my mind is “I wish I could understand your unsaid words”.

But it doesn’t mean that there has been no progress at all. He called me “mom” when he was eight years old, one of the happiest moments of my life. He is becoming more autonomous every day (can make a simple sandwich for himself when hungry), and more accepting of the changes proposed to him. He uses single word communication for stating what he needs. He has developed an interest in cooking which we would love to develop further.

Stigma Associated

Our journey with autism so far has been full of ups and downs. But I am happy that we didn’t shy away from seeking help and accepted the diagnosis and requisite guidance positively. That reminds me of an incident that dates back to 2004-2005. I used to teach kindergarten kids. I had a student who had similar issues like my son. But since I was not aware of the reason behind such traits (read lack of awareness then), I couldn’t specify clearly to the parents. I suggested parents see a child psychologist to understand the reason. Parents took it otherwise. His mother asked me upfront “Do you think my son is mad? All he needs is the teacher’s attention.”

Being a parent myself now, I accredit that mother’s response to a lack of awareness and an attached sense of embarrassment in such cases (especially in societies of the Indian sub-continent). The unfortunate thing is even after so many years, autism awareness is by and large still a bookish concept. Except for a few experts in the medical fraternity, psychologists, and the special education faculty autism isn’t a much-known concept among the masses. 

Even in 2023, when I told someone about autism, they had a blank expression and declined to know anything about it. What’s more worrying about the scenario is people consider autism to be some sort of disease that can be cured with medicines. My brother’s neighbour suggested that I must see a doctor as his nephew in a similar condition had a considerable improvement after the doctor’s intervention. I clearly don’t know what has transpired or what was the situation they dealt with but my stance was clear “Autism is not an illness”. Sadly a certain level of stigma is still associated with neurodevelopmental disorders that people don’t want to talk or accept about them openly. 

 A kid diagonised with autism needs therapies to enable him/her develop skills for daily life, communicate better (though every autistic is different when it comes to communication skills) and improvise the social interaction/behaviour. People with autism or any other neurodevelopmental issue deserve comprehension and compassion, period!

https://www.kennedykrieger.org/stories/myths-facts-about-autism-spectrum-disorder#:~:text=MYTH%3A%20People%20with%20autism%20cannot,friends%2C%20spouses%2C%20and%20children.

You can always share with me!

After I shared about my son’s diagnosis, a friend of mine called me and said she wanted to share something. She opened up about her son who was also diagnosed with autism spectrum. She poured out her heart about her struggles as an autism parent. She chose me to confide in, and I consider myself fortunate. Recently, another friend of mine shared her doubts about her child being on the spectrum. I understand how nervous that point can be to be at. 

 Being an autism parent isn’t easy (for that matter parenting comes with its own set of challenges). Constant efforts to provide better opportunities to enable their kids to learn and lead a life at par with any other person coupled with anxiety about “what after us” defines the lives of autism parents. 

I have had my fair share of struggles and still continuing to deal with them but would be happy to lend my heartfelt support to parents with autistic kids. I don’t have any professional training but have the heart at the right place to hear you out and understand your position. I think we deserve such support.

An Important Mention

Whatever my journey has been, I consider myself to be lucky enough to have found helping people and dependable organizations to smooth out the bumps in our ride. Since the diagnosis SUSA and FAMISOL (NGOs in Brussels, Belgium) have been constantly on our side, helping us to plan activities for my kid, seeking government aid/benefits, searching for a place in school, etc. My son’s school “Ecole AstronAutes” has been a great asset to us in this journey so far. Expertise alone can’t set things right, it’s love and care that work wonders. I am privy to this. 

In India, I came across a wonderful organization “ASHA HAI” which literally translates to There’s hope. True to its name, the organization with its well-trained faculty is putting in a lot of effort to turn around and make lives easy for kids with autism spectrum and other special needs.

Asha Hai – Aiming inclusivity & empowering young minds

Final words

Don’t let the definition of autism define or limit your love for your child or the dreams and aspirations of your kid. They have a different prism to look at things, perhaps not only different but beautiful as well than how we perceive the world around us.

The Moral Of The Story…..

Yet another page from the mother-daughter diary

Mom, please tell me a story and put me to sleep,” my daughter requested a routine part of our evening ritual. Sometimes, I read folk tales from books, while other times, I resort to YouTube bedtime stories (especially when my to-do list is long and anxiety creeps in). But occasionally, she craves fresh stories, complete with specific characters, names, and habits of her choosing. Her imagination knows no bounds, and she presents me with the juiciest story ingredients from the land of make-believe. Once she hands me these ingredients, the onus falls squarely on my shoulders to conjure up an enjoyable tale, always with a moral tucked within.

This time, she asked for a jungle story with a baby elephant named Daisy as the central character. Crafting instant stories can be challenging, but parenthood equips you with unique skills—either you become a multitasking pro or figure things out on the fly. I belong to the latter category, so let me dive straight into the story. Don’t worry; I won’t put you to sleep (that’s the purpose of a bedtime story), and I’ll keep it short.

The story:

Daisy had recently relocated to a new jungle colony where monkeys thrived. She was eager to make new friends. While her companions spent their days climbing tall trees, Daisy explored every nook and cranny of the jungle. Her mother, however, was displeased with Daisy’s seemingly unproductive days compared to her friends. “Why don’t you learn something from your friends?” her mother would lament. “At least give tree-climbing a try. You’re causing me a lot of anxiety,” her mother’s lectures would drone on. Daisy’s mother even persuaded her to participate in the annual monkey race. Daisy’s failure in the race left her with a bitter taste of disappointment and sparked a sense of resentment.

One day, Daisy’s parents had to leave for a nearby colony and entrusted her to the care of their neighbours. As everyone gathered on the ground, engaged in casual conversation, a rabbit named Bonny arrived in a panic. “Folks, I overheard hunters in the nearby fields; they’re planning to attack our colony,” Bonny shared, visibly distressed. A sombre mood settled over the assembly. While Bonny continued to speak, a gunshot shattered the tranquillity, setting off chaos. Monkeys scrambled to find cover, with a few perched high in the treetops, attempting to locate the hunters. Amid the chaos, Daisy realised she possessed the strength to make a difference and help others. She used her power to create obstacles for the hunters, uprooting trees and hurling them as a diversion to buy time for everyone to escape. A coordinated effort led by Daisy ensured the safe escape of her friends from the hunters’ clutches.

Upon their return, Daisy’s parents learned of the harrowing ordeal and were immensely proud of her bravery. Her mother patted her back with her trunk and whispered, “I’m so proud of you, my dear.” Daisy smiled and responded, “Mom, I couldn’t climb trees like you wanted.” Her mother left with a thoughtful expression, pondering her past behaviour of constantly comparing her daughter to others.

As soon as I finished the story, my daughter quickly remarked. “Daisy’s mother is just like you, Mom. You sometimes compare me to my cousins.”

When I created this story, I knew my clever daughter would likely identify real-life parallels, even though I struggled to be creative. I occasionally replace fish with elephants. As much as I pride myself on being a modern Gen X parent, I must admit to moments of anxiety and overenthusiasm. I’m not ashamed to admit that I sometimes compare my children to others. When I repeatedly notice my daughter making the same calculation mistake, paranoia sets in. I envision a matrix of future scenarios, each with its permutations and combinations. I end up citing examples of her cousins, who face a more extensive syllabus and a rigid educational system.

However, looking back, I realise that I, like many children of the ’80s and ’90s in India, grew up in an environment where parents often resorted to comparisons, especially in academics. They aimed to secure a comfortable future for their children, but the impact ranged from stress to agony. My mother, not highly educated herself, believed that tracking our grades and comparing them to our friends was the right approach. Whenever I performed poorly on an exam, nervousness overwhelmed me. I was worried about conveying my dismal results and the impending consequences. I confided in my brother, who had a simple solution: “Just tell Mom you did well, and when the results are out, you can face her wrath then. Why double your trouble?” Fortunately, things changed when I began my college education. My mother stopped comparing our results and began to value the learning process, emphasising understanding concepts. More importantly, she believed in me and my responsibility for my studies. It was a breath of fresh air, and I am proud to say I lived up to her trust.

But can you blame me for occasionally slipping into the “look at them” behaviour? (Ideally, you can; I am guilty and have no qualms about accepting it.) I have firsthand experience of this environment, which sometimes seeps into my thought process.

Returning to my current situation, I continuously train my brain not to succumb to the temptation of making comparisons of any kind. However, as a flawed individual, I do stumble at times. I find myself comparing my achievements to those of other successful women (though the definition of success is debatable). Each of us has our own set of problems, and those I compare myself to have their own stories. However, everything appears obscured to me, and I often turn a blind eye to the obvious. This is where self-doubt takes hold of my senses and abilities. I must mention the role my husband plays here. He never compares our children to others, as he went through a similar experience as a child. He believes that comparisons lead to pain and misery and erode confidence. He firmly stated, “I wouldn’t mind if our daughter chose to work in garbage collection as long as she is happy and honest.” (When she was younger, she expressed interest in becoming a garbage collector; her preferred career paths have since changed.) His priorities are well-defined, and I can learn much from him.

Let’s broaden our perspective:

Is comparison inherently evil? Or can it serve as a tool to drive improved performance? The impact of comparison on our lives hinges on how we employ it. We cannot entirely eliminate comparison from our lives, as it permeates both micro and macro levels, especially when dealing with quantifiable aspects. It is woven into our social fabric, manifesting among us at some point. If used as a tool for introspection, comparison can pave the way for crafting a concrete action plan to reach our goals. It becomes a means to leverage self-improvement. Comparison is a valuable tool for introspection when we are willing to acknowledge our weaknesses, identify our strengths, and chart a unique path toward our objectives. Customisation is critical because each individual employing comparison must consider their unique circumstances. Every journey, destination, and path is distinct. However, what if the element of customisation (an understanding of our own circumstances) is missing? You either end up idealising or criticising someone in a better position, all while neglecting your own life. In my native language, Telugu, there’s a saying that translates to: “A fox burned its skin to acquire the appearance (stripes) of a tiger.” It signifies the futility of trying to imitate someone else. Such attempts only lead to pain. If comparing oneself is to attain acceptance and conform to certain notions and standards, relentlessly pursuing these can result in irreversible losses. For instance, fashion influencers frequently indulge in fashion hauls, showcasing their brand-new purchases to garner attention online. Their vanity often rubs off on their young audience, who feel compelled to mimic them. The comparison cycle begins: “I must acquire the same clothing.” “I need to shop from the same brands.” “My wardrobe must rival the influencer’s.” These actions, undertaken without considering one’s needs and circumstances, can have severe mental, financial, and environmental consequences.

In conclusion (the moral of the story):

In a jungle colony like Daisy’s, comparison serves no purpose. However, for humans, comparison can be a valuable tool or a frivolous pursuit. Its impact depends on our acceptance of our circumstances, enjoyment of the learning process, and ability to carve a unique path toward our goals. The aim of comparison should always be self-improvement, never belittlement or self-misery.

Lastly, I shouldn’t deliver this profound speech to my 7-year-old daughter. Instead, I should refrain from comparing her to others, recognising her unique abilities and potential. My default mode should be mindfulness. As for myself, I should focus on my own path, embracing customisation.

Kindness – A Value Inherited

I, as an individual hold “generosity” in high regard of all values a human must possess.  Because that is what makes a human “A Human”.  If your heart is unmoved and untouched by others’ misery then you are just any other specie born on earth, scientifically called Homo sapiens, and just a link to this ecosystem.  Nothing great to brag about, right?

And my very idea of being a human was shaped by my father and in due course of my life, I have met many people (some in my contact list and some unknown) who made me hold on to this value very dearly.

Talking about my inspiration, my father I would like to quote one thing best describes his outlook

“Exhibiting a value you believe in needs no audience and no appreciation in reciprocation “

Yes, this is how he was. I would like to mention one incident from his life that would suit the quote mentioned above perfectly:

We were having dinner when there was a knock at the door.  “Who it could be” was our question and when the door was opened my father found a neighbor of one of our acquaintances in that area standing in front of him. “Yes, what happened he enquired.  They seemed to be in a hurry to finish matters “Woh jo aapki bhasha bolte hain na unki tabiyat bahut kharaab hai aur ghar pe koi nahi.  Aakar dekh lijiye” (the one who speaks the same language as you is seriously ill and no one is around, come and check upon him) and left. It would be surely a waste of space discussing such shallow minds here so I skip to the situation. When my father reached there the situation was worse than what he thought. That person was suffering all alone with dire cholera, lying in a pool of his own puke and feces. That was a gross scenario to recreate. My father took him to the hospital immediately singlehandedly. Meanwhile, he was drenched as that man puked on my father as well but that didn’t deter him from exhibiting the value he believes in. He served him wholeheartedly and took care of him in hospital for two days at the expense of his own comfort till his family was back. But in the end, that man for some reason which my father had no knowledge of wrote off everything and uttered really mean stuff against my father. But as a real gentleman he was, he didn’t hold any grudge against him. When poked at being so generous always he said “neither his misery was planned by him nor my help was sought so why to make an issue of an intentional act on my part. I was not expecting any accolades for what I did. And anyways we must not keep a count of our good deeds at least, someone else is already doing it”.

I have always seen him in this light. No complications whatsoever when reacting as a human to the other’s pain.

Coming back to the question “whether values can be passed as inheritance or not?”  Frankly, I am clueless. But surely to keep the values alive they need to be drilled in the day in and day out. Since children imitate well it’s only through the practice of values we care for, that we can pass on to them the legacy, period! Had I not seen my father as a generous soul, doing his bit relentlessly how would I believe in such values?

In The Quest Of…

Just another day, another page from the mother-daughter diaries: A few days back, I had our usual “before bedtime” conversation with my daughter. She, as always, was brimming with questions. From her treasury of “Why, Who, What, When, and How,” she pulled out a gem that left me in contemplation when I couldn’t provide her with a convincing answer. Although she drifted off to sleep before I could respond, her question lingered in my mind, prompting introspection. She asked, “What is the most important thing in this world?”

The world seems to be caught in a never-ending loop—needs are supplanted by wants, and even wants, once fulfilled, drive us to seek more, explore further, and acquire more. This cycle of desire has driven advancements throughout human history, whether through territorial conquests of empires or the technological progress we currently enjoy. Lives, or perhaps more accurately, lifestyles, have undoubtedly improved. To illustrate this concept, consider a metaphor: envision the world as an aircraft powered by desires and dreams, constantly ascending to new heights of success. But what happens if the coolant is lacking, if the fuel is tainted with impurities, or if there’s no place to land? The fire initially meant to provide elevation could consume the entire structure. In this analogy, the coolant represents contentment and satiation, while impurities symbolise greed, which can obstruct progress when mixed with the fuel of dreams and desires. In this context, peace is the runway that allows the flight to safely land, employing the shock absorbers of realisation, enlightenment, and wisdom.

Let’s delve into historical examples:

Before King Ashoka of the Mauryan Empire became “Ashoka the Great” and adopted Buddhism, spreading the message of peace, he was much like any other ambitious king, driven by conquest and power accumulation. The Kalinga War, a brutal conflict caused by his army, shook him to the core. He renounced his old ways and embraced Buddhism, choosing the path of peace.

Before England existed as a unified nation, the land was marred by bloodshed and conflict. Alfred the Great, King of the West Saxons from 871 to c. 886, envisioned uniting this war-torn territory to foster prosperity. Despite the bloodshed along the way, his dream eventually became a reality when Athelstan, his grandson, became the first king of a unified land called England.

In modern history, the European Union is a testament to nations setting aside bitter rivalries for the greater good. The EU was born from a desire to end the frequent and devastating wars between neighbouring countries, particularly after the Second World War. The Schuman Declaration, which advocated the creation of the European Coal and Steel Community, laid the foundation for the modern European Union.

These historical examples underscore the world’s recurring need to embrace peace for the long-term well-being of humanity.

But is this peace absolute, or is it merely an agreement? The ground for peace has often been purchased at the steep cost of sacrifices, treaties, and mutual respect for territories and boundaries. The fear of breach sometimes leads to a show of military strength to maintain the status quo. Recent Indo-China border tensions are a stark reminder of the price nations pay to maintain peace. In hindsight, it appears more like an agreement, a strategic order strengthened to prevent chaos and discord. The bliss of absolute peace remains elusive.

The Anchors of Peace that we need are compassion, contentment, righteous actions, and enlightenment. While these principles may seem clichéd, they hold a truth we often overlook. Consider a simple example: casual body-shaming or mockery, disguised as harmless humour, can profoundly impact a person’s self-esteem and mental well-being. We recoil from crimes punishable under written laws but often neglect the unwritten rules of nature that call us to embrace our differences. Where is the peace in a world where souls are oppressed, raging, and in conflict?

Throughout the night, I contemplated whether my answer, peace, was the world’s most critical need today. In the morning, I asked my daughter if she had an answer to her question from the previous night. She smiled and said, “Yes, I know the most important thing in this world – ‘You & Me’.” Her words kept me pondering once again…

BEING A FOREIGNER

Candles Online

“Je parle Anglais?” which translates to “I speak English” but the question here is why there is a question mark if this is a plain statement. Well, to answer that I must take a few steps back into the past when I was a newcomer to the city of Brussels and the French language was more alien to me than my relationship with it now.

It all began in the year 2009. Thanks to the extremely busy schedules of my husband back in those days (there were times when he used to leave home at 7:45 AM and won’t see it back till 3 AM the next morning, I was left at the mercy of television and internet connection to spend my days. But for how long. Slowly I started despising my loneliness, the damp and gloomy weather of the city where the sun won’t greet…

View original post 676 more words

Investments

Goin' the extra..aaamile

There was a time I heard people saying “invest in shares”to be followed by “invest in mutual funds”and then a few years later I heard a few say,“invest in property”, and nowadays what I hear is – “invest in people & relationships”

The kind of life I lead, I would like most of all to invest in myself as much as possible. You will definitely not find me idling my time dining at a restaurant or partying with fake people and alcohol. I would rather be at home doing things that make me happy, be it watching a movie on Netflix, playing an online game, writing on my blog, or keeping myself busy with a hobby – if nothing else you’ll find me reading a book or listening to music, or if I am out of home, you will simply find me on a walk away…

View original post 277 more words

Investments

Goin' the extra..aaamile

There was a time I heard people saying “invest in shares”to be followed by “invest in mutual funds”and then a few years later I heard a few say,“invest in property”, and nowadays what I hear is – “invest in people & relationships”

The kind of life I lead, I would like most of all to invest in myself as much as possible. You will definitely not find me idling my time dining at a restaurant or partying with fake people and alcohol. I would rather be at home doing things that make me happy, be it watching a movie on Netflix, playing an online game, writing on my blog, or keeping myself busy with a hobby – if nothing else you’ll find me reading a book or listening to music, or if I am out of home, you will simply find me on a walk away…

View original post 277 more words

WHEN OUR PATHS CROSSED

Candles Online

After eight years of marriage, Saanvi visited Delhi which once was her turf. She grew up there. That city for her is a bundle of memories – good, bad, enjoyable, precious, sad, unbearable – quite a complex concoction that she treasured. After her marriage, she moved away from the city so does her family.

Now after eight years an unusual business brought her back to the city. As she landed in the city, she was caught by the whip of air of the city, “how much I missed you” she sighed and headed for the hotel. As the taxi traversed through the lanes of the city, her thoughts wandered along with the wheels. Her eyes feasted on the street food, her senses were bamboozled by the color and fervor of the city, the ears were enjoying the concert of the noise of all-around. With all the sensory overloads…

View original post 714 more words

STRENGTH CONCEALED WITHIN

vini678

It was a big day for us as a family, my daughter was getting married. She looked angelic in her bridal attire. A sight to behold and cherish. But there was something else that caught my attention beyond the veil of her beautiful face, it was a nervous girl. My princess was nervous and confused.She needed some one to confide in .And if as a mother I can’t be that shoulder to lean on then who else can?And who else will?

“Come sit here .What happened? You seem to be wary.Is there anything that is bothering you?”I tried to calm her down and when she started speaking, my doubts dispelled. She had the nervousness that every bride experiences before walking taking those sacred vows. She opened up “Mom, I don’t know what is this feeling. It feels I am going to break down. Till now everything seemed to be fine.But…

View original post 718 more words

CAUGHT IN A GHOST CASTLE

Candles Online

Based on a true story:

A group of 8 young explorers, me among them, entered a house that was surrounded by not only darkness but rumors of being haunted. The air was eerie and the silence so thick that even a pin drop could set hearts race. I got a chance to enter with seven others, I was excited to prove. It was my chance to prove a few nay-sayers that I am not boring and when I mean adventure it isn’t about millennial pranks. I meant serious business and what can be a better option to set the adrenaline rush going than a haunted house. I would be dishonest if I say fear wasn’t on my side along with the seven others.

We together stepped inside the house that smelt pungent and we thought “let the helper at our house take off for a while and our houses won’t…

View original post 368 more words