RISING THROUGH DOWN'S

What follows is an interview I conducted with my Aunt and Uncle who kindly shared their experience of having Ravi, their son with Down’s Syndrome, whom they
“wouldn’t change for the world!”

An Eclipse at Dawn

My cousin Ravi has a Sanskrit name which means “the Sun” and his smile brightens up a room. However, with the shocking revelation of Ravi’s diagnosis of Down’s syndrome immediately at his birth, you could certainly say it more than clouded this joyful moment for his parents.

His parents, Ashok and Neela are my maternal uncle and aunt, whom I dutifully call Mama and Mami. Mami recalled her memories from that period of her life, “like any parent, we were happy and excited and looking forward to the baby… but, I must say, it was a shock, a real shock.” Neela spoke with a mature and accepting tone of the events that were some thirty years old now. The pace and tempo of her voice slowed as she became more thoughtful “it was kind of sad… we were afraid, anxious, worried… all these things together.” She then began to reflect on the questions she had at the time, “how is our baby going to grow up, will we have the energy or the knowledge and even the capability to bring him up?”

Mama interjected,

“not knowing was frightening.”

He seemed to relive the moment sharply and slowly nodded his head. In the short but powerful silence there was the acknowledgement that I would never truly comprehend the fear that manifested, nor their feelings of uncertainty for them and their newborn son. Mami gently broke the silence and continued to reveal her thoughts, “at the beginning we didn’t have a clue, we were quite naive and ignorant ourselves.”

However, what Mama and Mami didn’t know, was that the haziness was soon to be superseded by an eclipse. The darkness was brought forth by the highly insensitive words of a paediatrician. The exact words have been omitted on the request of this lovely couple due to their compassion, but suffice to say, in today’s world it would have involved disciplinary action.  What he proceeded to do was to write off Ravi’s life as essentially worthless and useless and his subsequent future, quintessentially hopeless.

Both Neela’s voice and lower lip quivered as she apologised for losing her composure. She wiped her tears carefully and found her voice again “he was just negative, negative negative… there was enough time, I didn’t need to know half as much as what he started to tell us and I thought ‘how can you say such things about our son, no child should be spoken of in this way.’”

Their vulnerability, lack of knowledge and need for support, mixed with this unprofessional medical professional’s opinion made for a dangerous polarising imbalance of power. This left them feeling abandoned and isolated. My mami said,

“I just felt…blank.”

Instead of describing the problems as potentials, the paediatrician, seemingly unskilled in empathy, tactlessly gave Neela and Ashok a list of complications they had to accept as inevitable. “He said he would have hearing problems, heart defects, he would lose his hair…  his speech…like…he said he wouldn’t be able to communicate. I mean, sometimes he’s a little misunderstood, but not like how that paediatrician told us.  In fact his words were…” my aunt again stumbled in her speech and paused, softly whispering, “sorry.” With a choked voice she said “what he said was horrendous and it still rings in my head so clearly thirty years on.” 

My uncle rescued her, illustrating the dismissive words of the paediatrician, “no learning, no writing, no painting.” My uncle, normally quiet and contained, added an emotional account to amplify the gravity and effect of the doctor’s words. However, despite his emotion he still added rational words that reflected the empathy within him, “he was just old school, if the babies had special needs back then, they were just left on their own and if they weren’t given the right kind of help, then they would turn out like how the paediatrician portrayed it.” I pondered on whether I would’ve been quite as magnanimous as my uncle in the same situation.

My aunt, clearly upset by the injustice of his words portrayed the misrepresentation over and over for me to understand, “he told us so many things that just didn’t come true… he said he wouldn’t speak, that didn’t come true. Thank God he hasn’t got hearing problems, that also didn’t come true… I just wonder why was he in such a rush to tell us all these things and in the way he did… I hope they have better paediatricians now.”

As our conversation deepened, I became more aware of the darkness they were in back then. I was completely unaware of this before. There seemed to be at least three layers to the darkness of their suffering. Firstly, the unexpected complication of Ravi’s Down’s Syndrome, secondly, the harsh and insensitive words of a paediatrician that should have helped them and now, finally, the journey home. A journey marred with feelings of inadequacy, dread and confusion.  They took that journey home from the hospital with the question,

“can we cope?”

Finding their way in the dark and THE rays of hope.

Being a natural people person, I knew Mami would have been clearly affected by the potential stigma that their new circumstances would bring. She recounted, “elders in the community would ask insensitive awkward questions.”  Fortunately, she felt supported by her husband “your uncle would say ‘he is our baby and we’ll do whatever we can for him and we don’t really care what people say about Ravi… your uncle has always been really positive and that really helped me.”

Mama squinted his eyes in reflective thought and revealed why he could see a shining glimmer of hope despite the bleak darkness, “I was in a slightly different position because I had a friend who had a Down’s boy and I could see what he was capable of achieving, he was able to eat, walk, talk, sleep, drink… he wasn’t severely d…” He stumbled through the last part of this sentence and paused to choose his words carefully. I realised, in that moment, the sensitivity my uncle had when speaking about this topic. He seemed aware of the power of words and the connotation they bring and the importance of context. He rearranged his sentence and spoke with more purpose, “the special needs for him were not so severe.”

I started to see that my uncle, due to his perspective and experience was able to doubt the words of the paediatrician and give some hope to his wife who was emotionally delicate and isolated.  My aunt elaborated on the first few months of bringing Ravi home, “initially, especially the first six weeks, I was quite resistant to any help but after about three months, I felt ready, a homeschool teacher came and was very helpful, she said to me,

‘stimulate him…the more input you give him, the more you get out of him’… so she was a great help.”

One day, another ray of hope came in the form of a stranger who was sent by their local Doctor. This unknown lady had the empathy required for Neela’s situation, she also had the right words, “don’t waste your tears, honestly, my son is so lovely, you won’t realise this now because yours is only a little baby, but when he grows up, like my Paul, he’ll be so loving and just adorable.” My aunt’s eyes opened wide and her expression and mood brightened as she seemed to visualise that day, “she left me this message and it rang in my ears.” My aunt became more animated and expressive and exclaimed,

“I thought… ‘I must start thinking like that.. not just sit and cry and worry.’”

This highlighted to me the importance of community or common-unity. This compassionate stranger came to deliver a message of hope.  I could see from my aunt’s face that these words had a deep impact, they had somehow begun to override her feelings of fear.

Mami, despite being anxious about presenting Ravi to her work colleagues, was pleasantly surprised by their responses calling him “gorgeous” and some repeated the same message “he’ll give you so much love!”

Mami recounted, “then, when he was about three months old he started to smile and clap, he was just a little bit behind other children, but it made me really happy.” I could notice the sense of relief and hope this brought to her.

There seemed to be many tears involved over the years but when probed on summarising what they had learnt and how Ravi had evolved them, they spoke with clear and realised words, like wise sages. Their answers were impactful to me and relevant to any parent.

They both proclaimed in unison,

“you have to have patience!” 

They chuckled and looked at each other. Mami added lovingly “we had this toy tea set and we used to encourage him to match the colours, you know yellow cup, yellow saucer, yellow spoon. Eventually he understood ‘oh! Mummy wants them to be matching!’ and he would get it right… so we gathered that he’s going to be slow…

…but he WILL be able to learn.” 

She burst into more laughter recounting her years of frustration trying to improve Ravi’s writing,“I ask him so many times to write on the line and I even question myself ‘can he see the line?’ and after multiple attempts, my Suraj (her younger son) says ‘I think you should leave it now Mum.’” 

They both laughed following this account and then Mami controlled her laughter, became suddenly grave and gently advised,

“don’t even expect anything unrealistic… whatever he can achieve, he will achieve, if he is happy then we are happy”.

She had a gentle and serious expression and stated, “we don’t compare Ravi with with anyone, as it serves no one...we just accept Ravi for who he is and what he is.”

I was so in awe of the next statement that I wrote down the minutes and seconds from the voice recorder on my desk to ensure I imbibed it into my own parenting,

“with acceptance, support and the right stimulation, the child will simply flourish”

The Bright Golden ‘Son’ in the Beautiful Blue Sky

It strikes me as incredible how poetic this family’s names are. Neela means ‘blue’ like the sky, their sons, Ravi and Suraj, have sanskrit names of the Sun and Ashok means the ‘effulgent rays of auspiciousness.’  I wondered, “was this designed by providence? or was it the foresight of a sagacious elder?”

This article is not complete without mentioning Ravi’s qualities values and wishes.

Ravi is incredibly appreciative and often repeats, with his charming lovable lisp, “grandad says ‘always be thankful’.” His father describes him as “self-satisfied…he’s simply happy with everything he has…he’s never demanding and shows no greed...he cannot comprehend the idea of holding a grudge against someone or causing them pain. He has an incredible amount of empathy and generosity.” Ravi’s mother added, “when my father died, he put his arm around me and said ‘don’t worry, I am here and I love you.’” 

As they revealed the reality of Ravi’s nature, I could not help but notice that this was the actualisation of that compassionate strangers words from thirty years ago.

Ravi is CHEEKY!
I personally remember, when we were younger, he used to say he was going to “put me in the bin” and now he tells his neighbour that he is going to “put her onto the Christmas tree” as an ongoing joke. His memory is emotional and may even be photographic,

he will remind you of small profundities from decades ago, leaving you speechless and sometimes even tearful.

If you were to ask Ravi what he wants to do in life he would innocently say, “look after God and help old people.”  He values friendship, socialising and honesty. He volunteers at a cafe and at an old people’s home, where he brings joy to others and expresses his service attitude.

Neela’s sister lovingly expressed to them that, “i feel like Ravi has come to the right home,” which noticeably melted Neela’s heart as she recalled the comment.

When requested to advise any parent with Down’s syndrome, my uncle responded succinctly,
“Don’t be frightened of the unknown, take things as they are, as they happen and take the guidance, give the guidance and be the guardian.  Then you will see that the child will just achieve what they’re capable of achieving. You just have to help them progress in their own way and at their own pace. Then they’ll be happy and you’ll be happy.”

Ravi’s mother finished with a final thought,
“I feel like Ravi has enriched our lives, he’s made us humble, he brings an innocence and joy, taking pleasure in the little things. Other people might miss them, but we don’t because he highlights them for us regularly.”

What started as a pencil sketch of the Sun has manifested into a vivid oil painting that brings warmth and joy when you take the time to admire it.

It is credit to Neela and Ashok’s dedication that their son is semi-independent and they “would not change him for the world!”

Their love and support has meant he has a voice to express and qualities that inspire, giving rays of hope and thus fulfilling the purport of his name.
Ravi.

ASHOK AND NEELA ARE HAPPY TO HAVE DIALOGUE WITH ANYONE WHO WISHES TO, THE EMAIL ADDRESS IS:
Ashok.m@virgin.net

#INKSTAINSFORYOURBRAIN

Ravi and suraj

SURAJ, ASHOK, NEELA AND RAVI AT A family wedding

The family enjoying turkIsh sunshine ☀️