Special needs children – Mom: AAA+ -With a positive outlook

#inspiringwomen: She Never Lost Hope – Through Life’s Toughest Challenges

In a crisp saree, ramrod straight back, not a hair out of place and a graceful smile. That’s Ruby, easily the smartest lady in our office. Born and married into a defense family, she is a living example of the values of the armed forces – strength and integrity. Without these, perhaps, it would have been difficult for her to handle the challenges life threw her way.

Youngest of seven siblings, Ruby was born in a post partition India, twelve years after her parents crossed the border from Pakistan. She tells me that her mother was in a petticoat and the youngest child stark naked when they arrived in India. Her family, along with other Hindu/ Sikh families, managed to survive because their Muslim friends safeguarded their houses and helped them escape when the time was right.

Born in Lucknow and raised across the country, Ruby grew up as a happy go lucky girl, interested in sports and taking life as it came. Married in her 20s, she moved to Jabalpur with Harjinder, her husband. The couple was soon expecting their first baby and excitement was palpable in the air. Everyone wanted a girl as the family had all boys. Her mother in law got busy making frocks. And girl it was! On January 21, 1980, Prabhdeep was born.

While her pregnancy was uneventful, Ruby’s labour was over a day long. In the labour room, it had been a busy night and the doctors had birthed 9-10 babies already. By the time Prabdeep (lovingly known as Chhotu) was born, both Ruby and the doctors were exhausted. When the baby finally pushed her way out, lights went out. In the ensuing confusion, combined with a weary team of doctors, they forgot to make the baby cry. THEY FORGOT! Medical profession is one such profession where a normal human error can have a huge cost. In this case, it cost Chhotu her first breath and consequently damaged her brain. Permanently. Irreversibly.

But Ruby didn’t know. Nor did the doctors.

What’s wrong with my baby?

As months passed, it became evident that all was not well. Chhotu wouldn’t cry. Pediatricians told them crying was important for her lung development. They asked Ruby to slap her and make her cry. She did. Chhotu cried. Sequence repeated. Endlessly.

But even now no one suspected brain damage despite the tell-tale signs. This was the 1980s and perhaps knowledge of brain injuries was limited. Not only limited, I would say there were prejudices as well as denial. When Chhotu was 11 months old, they had an army doctor couple as neighbors who had a same age girl. Sensing Chhotu was “not normal”, they wouldn’t let their girl play with her. This, coming from a doctor couple. When Ruby consulted another pediatrician, he refused to believe anything was wrong with Chhotu and instead referred Ruby to a psychiatrist. Apparently Ruby was “imagining things”!

But Ruby refused to believe them. She knew something was wrong. On her way from Jalandhar to Bhatinda, Ruby took Chhotu to Christian Medical College in Ludhiana where they had been referred by a friend. The intern who examined her there immediately suspected cerebral palsy and sent her to a physiotherapist.

Finally, Ruby had a diagnosis. And understood the reason why. But bigger and more important challenges lay ahead. Helping Chhotu develop. Become independent. Making her financially secure. A long journey lay ahead.

The road ahead

I asked Ruby how she felt at that time. After all, a diagnosis such as this is not easy on any parent. I know. I am parent to a special needs child too. But she says they had no time to feel anything. Going from one day to the next, handling daily pressures, left them no time to grieve. Her husband took a posting in Delhi on compassionate grounds so that they could get her the best treatment from AIIMS. Husband and wife took turns to take care of Chhotu on a daily basis. Harjinder would come home by 1.30 and give Ruby a break. And soon a routine was established. It is commendable is how both of them took the entire responsibility of care-giving for Chhotu – feeding, bathing, changing and still do. They never relied on any outside help.

When Chhotu was four, they admitted her to a school. Lady Irwin college – home science, Child Development department ran nursery classes for children including those with special needs. The school was a blessing for them. Chhotu was taught basic etiquettes, painting, playing and there was a lot of integration with ‘normal’, neurotypical children. Chhotu thrived there, slept well, ate well and was happy. Ruby remembers the first day she dropped Chhotu at school. She wanted to go in with her, worried how she would react, away from her mom for the first time. Not allowed to go in, Ruby sat on the pavement outside the school for three hours, waiting for Chhotu to come out. She need not have worried, Chhotu was happy and had had a great day!

A series of horrors

By the time Chhotu was six, she had outgrown the nursery school and her parents started looking at options. And then began a series of horrors. Chhotu was sent to a famous school for special needs children. Started by someone with a special needs child herself. The school had good facilities, but teachers lacked compassion. They seemed to focus on children who showed faster improvement. And sort of ignored those who lagged! Ruby recounts, “once when I went to pick Chhotu, the teacher told me she has been punished for not counting from 1 -10. And what was the punishment? She wasn’t allowed to eat her tiffin and the little child remained hungry from 6.30 a.m. till 1 p.m.” “I just couldn’t send Chhotu there anymore.”, says Ruby.

At another charity institution where Ruby sent Chhotu, she found out they were in the habit of hitting kids – Chhotu would come back with cane marks on her legs. And at yet another school, a Chinese Checkers peg that Chhotu stuffed up her nose went undiscovered for two days, till Ruby noticed her discomfort.

By this time, her parents also realized that while Chhotu was growing physically, development in other areas was slow. There was no speech till age 4 and even today at 39 years her speech is not very clear. Till age 7 she wore plastic panties and was still not fully toilet trained at 13. A bigger issue came when she hit puberty at 12 and had to be taught how to manage her periods. The last was perhaps the most difficult to manage. She had fibroids and would bleed heavily and more often. The doctor suggested hysterectomy. But Chhotu’s father would not hear of it. He took it as his personal task to help her manage. However, he had to give in when he realized that it was physically taking a huge toll on her. She would droop from the strain and pain of it. The family took a tough decision and decided to go for the operation. Chhotu took it in her stride and was up on her feet the day after the operation.

By this time, Ruby and Harjinder were sure their daughter needed greater support to become more independent and were unable to find it in Delhi. After much research they found out about Swayamkrushi based in Secunderabad, an institution for children and adults with special needs that aims to make them independent and become part of the mainstream society.

At age 14, Chhotu went to Swayamkrushi, to live away from her parents. Another tough decision was taken.

Today Chhotu is a happy young woman

Swayamkrushi was a blessing for Chhotu. She adjusted very well there and has made some very good friends. Today she is a happy and very loving person. Her smile is infectious and you cannot help but smile in her company. And like every young woman, she loves to dress up, shop and is interested in men!

At Swayamkrushi she was trained to take care of herself. Soon after joining Chhotu became toilet trained. She was able to do small things for herself. Now when she is at her house, she helps lay the table, put dirty dishes for washing and clothes in the washing machine. She also goes to a special school where she helps lay the table for children and gets to interact with them at a personal level.

Ruby believes that peer learning, interaction and peer pressure helped Chhotu develop the most. And she has Swayamkrushi to thank for this. To see the work Swayamkrushi does, please see the coverage they received from NDTV, where Ruby also talks about the positive impact this institution had on their lives.

Building a financially secure future for Chhotu

Early on, Ruby and Harjinder realized that it was important for Chhotu to be financially independent after they were gone. They were also clear that this couldn’t be done only on Harjinder’s income. So she started with small, temporary jobs. She was once selling cards made by special needs children at embassy when she was told about a temporary job at the World Bank. She approached them and got the position. She started with a two week job, which quickly became a month and soon she was filling in for anyone who was on leave. Slowly she got a 6 month tenure and then a one year and then another. By 1992, she had a full time job. And she never looked back after that.

The hard work paid. They managed to build a house; move from a scooter to two cars and then to another house in Secunderabad. Ruby has also heavily insured herself in case of any eventuality and both Harjinder and she have prepared their wills. Chhotu is also a member of the national trust and two of her cousins (one from each side) are her guardians.

These days, Ruby is putting together a trust for Chhotu with 5 trustees – 2 cousins, a bank manager and a teacher from her school. This trust will ensure Chhotu has a regular income stream and funds available in case on unexpected needs.

Soldiered on like a true warrier – Hats Off

As Ruby and I spoke in length about her life, she revisited areas of her past buried deeply within her. She told me there was a second baby too. Chhotu was around six at the time and was very excited at the prospect of a little baby. Harjinder was posted at Kargil at the time. Her baby boy was born at 37 weeks with a punctured trachea that caused edema in his wind pipe. The child was kept on ventilation. His left cheek had a droop and he was unable to swallow. Even in this situation, the gynecologists and pediatricians were embroiled in a petty battle. Ruby’s gynecologist wanted to keep her in the hospital, but the pediatrician saw no need for it as she wasn’t feeding the baby. On the 10^th day she was discharged.

That same evening when they came to see the baby, the incubator was empty. They went across to the pediatric ward to speak with the attending doctor, when they enquired about the baby – he said that the baby had passed away. We wanted to know where the baby was – he said – “aur kahan hoga…. Mortuary mein” (“where else – in the mortuary”)………..

As she relives this horror, her tears flow for the first time. I am speechless. And at the same time in awe of this woman who has gone through so much, has weathered so much and still exudes so much positivity.

Her advice, “take each day as it comes, and let things happen at their own pace.”

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I hope you found Ruby’s story as inspiring as I did. Please do share – it may give courage to someone else who needs it. #thesewomendeserveit.

My Special Needs Baby – My Inspiration

If you have been following my blog or know me personally, then you will know that my littlest baby Anvay has special needs. What this means is that his pace of growth is much slower than the typical child and we also don’t know yet how independent will he become. Needless to say, any parent would be devastated to hear that their child has special needs. So was I. One year ago, we found out about his condition, and since then I have come a long way. I wrote about my grief earlier this year. You read it and you sent your support. And I realized that lessened my pain. It helped me deal with my feelings. It helped me accept and acceptance helped me focus on the future. The future of my baby. So thank you for your support and your wishes.

Today, about a year after the diagnosis, I am glad that I am a better person, a stronger person and a somewhat happier person. And in that mental transformation, my baby has been my inspiration. He has helped me face one of my worst fears and has shown me that faith and hope are an essential ingredient to leading one’s life. I have also learnt from his sheer grit, his patience and his ability to smile in pain. Today I want to share some of what I have learnt with you.

Aside from losing a loved one, the greatest fear I had was having a baby with special needs. I thought I would never be able to handle it either emotionally or physically. I felt I was not strong enough. But I have realized now that the strength to handle anything is within us. When faced with a situation, we need to look deep within us, and we will find that we are already armed. I learnt that when you face your biggest fear and look it in the eye – it diminishes and gives way.

Once I accepted Anvay’s condition, I found hope and faith to be my best allies. In his condition, there is no cure but through regular therapy many babies start functioning normally as they grow up. But no doctor or therapist could tell us what to expect as Anvay grows up. Will he be able to walk? Maybe. Will he be intellectually disabled? We don’t know yet. What about his eyesight? Might improve. When there are no clear answers, Faith is the only thing that makes you go on. The faith that my baby will also progress and become independent and perhaps read this blog one day. And Hope is faith’s best friend in this journey.

One of the conditions that Anvay has due to his brain injury is spasticity. It basically means that his muscles tend to pull back inwards and his limbs remain tight. Diapering him is not always easy because his legs don’t open up properly. For many months after he was born, his fists were often clenched. This is due to his spasticity. And spasticity can be painful. If you try moving around with clenched arms and legs you would know what I mean. He used to cry a lot during his early days and we realized after his diagnosis that a large part of this must be due to the spasticity. Through therapy he has improved now, but it still hurts him and he cries. And each time I hold him, console him, he smiles. He smiles despite his pain and tries to stop crying. He is just 20 months old and he teaches me to smile through my pain and move on. By the way he has a sunshine smile and any advertisers out there should seriously consider him for their shoots! (P.S. it will also help you spread awareness about special needs children)

And with that smile come his grit and his patience. The part of his brain that was injured transmits the messages from the body to the brain. The reason he is not able to sit up is because his brain is unable to tell his body to get up. But he tries. And he keeps trying. These days he is trying to lift himself up on his fours. He pushes himself single mindedly till he is tired. He fails and he fails again and then he pushes himself once more. And he screams with the effort. Think of a weightlifter lifting a heavy load and his grunts from effort and pain. I feel ashamed at how easily I sometimes give up after a dose of failure.

But the more difficult something is, greater is the happiness in its achievement. Every bit of the progress Anvay makes, brings us ten times the happiness. It reminds us of the effort that went in. It also reminds me to not take anything for granted. I cannot take for granted the fact that I can think and walk and talk. But for a few seconds of lack of oxygen, Anvay would have been like us. Those few seconds of oxygen, is what we should all perhaps be grateful for.

I mentioned above that the communication pathways in Anvay’s brain have been damaged. So how is he overcoming that problem? When I understood how, I found two important lessons – both philosophical and scientific. Through therapy and his own efforts, Anvay’s brain is trying to rewire itself. In science this is known as neuroplasticity – the ability of the brain to change throughout its life by forming new connections. This has a lot of significance for all of us. It means that even as the brain ages, we can continue to learn and the more we use these connections, the sharper our brains become.

At a different level – what this means is that – when one route closes, we need to find another way. It will be tough, it will be challenging, but we should be sure that another way exists. If it doesn’t we can forge our own path. When a door closes on us, we know there will be many others to choose from – if only we stay focused and look hard.

Finally and perhaps the most important lesson I have learnt is that we all live at our own pace. I will be honest and say that it pains me to see the increasing gap between Abeer’s and Anvay’s abilities. But I am learning to ignore that gap. I am learning to compare Anvay’s progress only against himself. I believe he will make his own way, with whatever he gets or does not in life. His life will have meaning and we will find it. I will consciously avoid comparing him with how a typical kid would grow. I also try to stop feeling cheated about the deal Anvay got. This is what we have and this is what we will live. In the best way possible. And ultimately, all we need to be is happy. That is the one single goal we need to strive for – whatever our pace.

Lastly, for those who would like to know – Anvay has been improving – slowly but steadily. He is able to roll over – he sits up without support for a few minutes, he is focusing better, he is able to creep a little and also pull himself up with some support. So please add him in your prayers and send us your love – from wherever you are. And I will keep updating with our progress.

Grieving the Loss of the Perfect Child

From the time a baby is conceived, parents and close family start weaving their dreams around it. How would it look like, a girl or a boy, what kind of a person will she grow into and so on. We all have our image of a perfect baby, the perfect child. He is an embodiment of our dreams and aspirations.

When we found out we were having twins, we were ecstatic. Images of fun filled laughter, two little babies gamboling together, two pairs of little feet running around the house, filled our minds. We loved watching twin videos on YouTube, tickled with the thought that this fun would soon be ours. When Abeer and Anvay were born – we talked often about how they would turn out when they grow. Abeer, the attitude kid, looked set to become a Rockstar and Anvay, with his perfectly proportioned body was going to be our super model. We imagined the two boys and their same aged cousin, in their early twenties at Arnav’s wedding. Three lanky young boys, having the time of their lives.

But now I am not so sure if these images would ever become reality. Because unknown to us, while we celebrated the birth of our twins, Anvay had sustained brain damage. Anvay, the healthier of the two, who was not even a likely candidate, had sustained brain damage. I have no clue, what happened between the two minutes between the time they both came out, that led to this. Their birth was apparently normal. The doctors did not find any anomaly. In fact, they did not even do an MRI when Anvay was discharged (which they did on Abeer) from the hospital – I am assuming because nobody expected what had happened.

The news that your baby is damaged is devastating to any parent. Devastating is actually putting it very lightly. It rocks the world of the parents. All the dreams, hopes and desires come crashing down. The process of grieving begins. Yes, it is grieving. You grieve for what could have been, what should have been and why it isn’t what should have been. The parent grieves for the loss of the perfect child, the imagined child. A parent will typically go through all the stages of grieving – denial, anger, bargaining, grief, and eventual acceptance. I recently read a blog from a parent who writes about grieving for a child she has not lost.

I like to believe I am stoic. And I am, to the extent of being able to control my emotions outwardly. I took the news as normally as possible – showing concern, but able to hide the panic. Reading pages after pages on his condition and internalising all the good and bad scenarios. I managed to harden myself to the extent of being able to talk about it without losing composure. I told a few friends/colleagues – but I opened my mouth only when the instinct to break down had been pushed down to the depths of my stomach. I can proudly say that I managed to explain his condition as objectively as possible. The discussions with the neurologist were kept as matter of fact as possible – even humourous.

But grief has a way of coming out. You hold it tightly at one end, it will slip out from another. I remember watching Dunkirk and realized I was crying – it had nothing to do with the movie. Sometime on a plane – watching Hello Zindagi, I discovered my face was all teared up. I can’t remember the number of times I have cried sitting in the backseat of my car, safe in the knowledge that my driver doesn’t have eyes in his head. But I learnt to let the tears flow. They needed to come out, for us to be able to move ahead and plan for Anvay’s recovery, with a clear head.

Anvay was 6 months old (corrected age 4 months), when his pediatrician said that his muscle tone is high. It made no sense to me. He then went on to say something about spasticity – which rang a bell in my mind. Spastic? Does that not mean mentally retarded? (it does not) I was immediately horrified and the image of a helpless, mentally retarded child went through my mind. And laughably, one of my thoughts was whether he would ‘look’ normal. That, really is the least of my concerns.

Once we got the MRI done, we got a confirmed diagnosis of PVL – a form of white matter damage in the brain. Our pediatrician (he is a great guy) told us not to worry. He had seen many cases, where children with PVL after initial years of struggle went on to lead perfectly normal lives. Though he was concerned about his CVI – which is a visual impairment where the eyes can see but the brain cannot perceive. But when we found out that Anvay was also having seizures, also known as infantile spasms, he sounded pessimistic for the first time. And that I think also finally sagged my spirits.

However, there is hope. His spasms seem to have been mild and were treated within one month. They have not recurred since and we have our fingers crossed till he turns two. He is improving – albeit slowly – but that is expected. He is rolling now, holding things in his hand and the other day, he ate a biscuit on his own. Every little step he takes is a cause for great happiness. He is a very happy baby and has the loveliest smile – it makes our day when he smiles at us. His naughty little personality has also started to shine through!

I talked about our dreams crashing. But I had also started the new year with a new hope. We are rebuilding our dreams. I believe in the human spirit – that it can rise up to any challenge and overcome it. I am sure Anvay and we will find a way. If one door closes, there are many others waiting to open – we just need to be willing to look for them…

Anvay IS my perfect child – as different and as unique as my other two….