A Special Parent's Journey Called ACCEPTANCE!!!

For children with special needs (CWSN), a lot is discussed about training, skill building and so on. Normally a very little is talked about parent's journey from the moment he/she know about the disability to the point of complete acceptance. It's a very unique journey and no matter how much anyone else advises, every parent has to cross this bridge on his/her own...

I remember distinctly when we came to know about Shlok's diagnosis as a Down’s Syndrome child within few hours of his birth. That moment was rather devastating and even today, it brings up the vivid memory of the excruciating pain and a feeling of being cheated in some way ... I say being cheated because all through the pregnancy we have dreamt of a healthy child and all of sudden Almighty has handed over a child which would require enormous efforts and patience while raising him/her.

In those early days, I remember listening to sad songs like Zindgi Kaisee Ye Pahelee hai...or Jagjit's gazals like Jeevan kya hai and so on. After a decade since Shlok's birth, today I gladly buzz around jingle from Bajrangi Bhaijaan... Tu Jo Mila Lo Ho Gaya Main Kabil...Kyon Ki Tum Dhadakan Main Dil :) And I really feel that way. Not that everything is rosy and dandy; but, the mindset has changed in profound way to accept his limitations, not to fret about things that we can’t control and channelize ours as well as child's energy in doing something constructive.

I was curious on how parents cope up from the early days of shock and denial when parents receive the first intimation. Emotions are practically not present and the reality of the situation has not yet sunk in at that given point in time. Parents somewhat refuse to see the situation for what it is. After the early days of receiving “announcement”, parents go back and forth between anger and depression for months and years together to come to the terms with the reality. Their minds tend to have agony and deep sorrow even though they are taking all necessary precautions, visiting doctors/therapist and special educators round the clock...

Unless parents reach an acceptance at deeper level of mind, there is no escape from the spiral of negative emotional. This entire process is not linear and not everyone goes through every stage. At times, some may be quite angry and then go back to the denial stage. They can bounce back and forth among the different stages for quite some time. Finally, when acceptance sinks in, they are ready to accept the new reality, even though it's not the one they wanted. You may experience improved relationships or notice you have increased compassion for others, or have more appreciation for what you have. And the next logical step is not just staying fully integrated in child’s life but to advocate for his/her condition, talk openly about their learning disorder and continue helping them along the way while helping new parents dealing with their news... 

As I said earlier, every child is different and every parent is different. So the journey of acceptance is quite unique in its own way. For me, it took good nine years (For my wife, perhaps it was lot quicker, perhaps couple of years!). It was particularly long with the fact that Shlok was born in USA and I had access to all the scientific information and more importantly we were in society with greater acceptance for disabilities. Still it took me long to come to a stage where I accepted him from bottom of my heart and with all his kindness & imperfections. This moment is the moment of truth as from this point onwards it just becomes natural to do what requires to be done for your child.

As the song goes in Bajrangi Bhaijaan -

Aashiyana Mera, Saath Tere Hai Na
Dhundte Teri Gali, Mujhko Ghar Mila
Aabodaana Mera, Haath Tere Hai Na
Dhundte Tera Khuda, Mujhko Rab Mila…

Tu Jo Mila, Lo Ho Gaya Main Kaabil
Tu Jo Mila, Toh Ho Gaya Sab Haasil
Mushkil Sahi, Aasan Hui Manzil
Kyunki Tu Dhadkan …Main Dil…

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For Comments & Suggestion, Please Contact - Sachin Jakhotia /C.+91 83088 79900/ sachinjakhotia@gmail.com

A Dad’s Role in Raising a Special Child !!!

Today morning a thought flashed in mind that how one should perceive a dad’s role in raising a child with special needs. I would think it is very much similar to any other father but with some added nuances and subtlety.

Before my marriage, I was in USA and my boss was an American. He used to tease me about Indian arranged marriage system and I used to respond to him that still Indian marriage system has better results compared to western marriages where divorce rates are worse than flipping a coinJ. Albeit, he had suggested me to read a book – Men Are from Mars, Women Are from Venus. From that early read, I got few pointers. But the most important one stuck to me was women are like waves.

From raising a special child point of view, there are quite few instances when a mother goes through emotional upheaval. Sometimes, they tend to sink into a depression when they feel it is time for emotional cleansing and resolution. Such situations prop up all of sudden without much notice. Houston’s George Brown Convention center when he was hardly 2 years old. My wife, Sheetal tried doing every bit to dress him meticulously along with props butter-pot, flute etc. Yet he did nothing on stage and in fact, he kept on crying on the stage. Sheetal’s friend’s child won first prize who was actually a week younger to Shlok. As a father I felt disappointed and though I was still rationalize the result being logical and correct. But somehow Sheetal was crying at least for an hour on our way back to home. I realized it was NOT about the prize, but a feeling of raising special child was slowly sinking in for the mother…

At such times they may become utterly negative in their outlook, dwelling on not only the special child but every little problem which troubles them. They suspend their normal giving natures, demanding the right to express their feelings and not to be left on their own. At this point a father has to put on listening hat for a short while (believe me it’s most difficult thing for men!). If supported and allowed enough time to express and release their negative feelings, they will begin to feel happier again and return to their usual loving selves. So in a nutshell, it a father’s responsibility to handles such delicate moments and maintain emotional balance within the family.  

Other area which requires quite attention is if mother is caring for special child, then father should pay little more attention to normal kids in the family. Ideally, these roles needs to switched though-out day & week so as to maintain decent focus on needs of normal kids as well. There needs to be some special activities that both parents needs to do for the normal kid as eventually that will help in creating good bonding within family over a long period of time. 

Other influence I had early on was 7 Habits of Highly Successful People authored by Dr. Stephen Covey, an all-time best-seller well accepted in western world. Dr. Covey has pointed out apt examples and different mindsets of a manager vs. a leader. In larger context, we can see “special children” are like “products” to be launched in “markets” (society!) and mothers become manager of implementing day-to-day processes at least in the early phase of life.  In that sense, father’s role comes down to supporting the mother for maintaining daily routine and providing some structure for handling the situations efficiently. For examples, as an Engineer, whenever we are faced with Shlok’s stubborn and difficult behavior, I try to address it with making simple check-lists for monitoring his behavior and channelizing his energy towards a meaningful task or activity that he would enjoy.

More importantly, dads should take initiative in establishing long ranging goal, visions for the child in respective developmental phase of the child and follow through with providing necessary structure along the way to achieve these goals in family.  For instance, we have itched out a goal for Shlok few months ago that by 18-20 yrs, he should be working independently at least for 4-5 hours daily in any field of his choice or whatever opportunities market offers for such individuals. Another long-tem goal is to create a Trust or similar mechanism for him over next 12-15 years. So all our thoughts, planning and actions in daily life need to be aligned to the mid and long-term goals.

It is indeed heartening to see super dads like Mr. Aditya Tiwari creating huge difference in spreading awareness about special children in India. It really requires a big heart to adopt a special child while being single and even to go to the extent of leaving job for caring for that child! Yet traditionally, father’s role in Indian society has been very limited. With more nuclear families, it is very prudent that dads take larger role in kid’s development more so for special children!  “One solution fits all” could never be the situation. So every family has to customize role of each parent whether it is 60/40, 70/30; but it surely cannot be 90/10…

We as parents are custodians of our children’s future and we need to continue doing a tad better than yesterday…

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For Comments & Suggestion, Please Contact - Sachin Jakhotia /C.+91 83088 79900/ sachinjakhotia@gmail.com

What does SHLOK mean to me?

Mar 21^st is celebrated as World Down’s Syndrome Day. At first I did not understand how the date is selected. The 21st day of March (the 3rd month of the year) was selected to signify the uniqueness of the triplication (tri-somy) of the 21st chromosome which causes Down syndrome. My son, Shlok is born with Trisomy-21 diagnosis in Houston (USA) back in Aug 2009.

SHLOK - a very meaningful name and truly special person in my life who has brought immense meaning to my life. 

With all the patience and resiliency like any other special family we strive to keep things normal with Shlok and within the family. But at times we falter and then it feels like raising a special child is like eternal Agni-Pariksha for the child and the parents altogether. Trigger can be internal - child, ourselves or external - apathy of medical and government support & policies and so on...As if it's eternal quest for special families to struggle, struggle and keep struggling.

So coming back on what Shlok brought to me. Interestingly enough he has brought S.H.L.O.K itself - Sense of purpose, Hope, Love, Objectivity and Kindness !!! ... Sounds like S.H.I.E.L.D from Avengers :)

Sense of purpose - Before Shlok's birth I was happy-go-lucky chap with aspirations to grow professionally and have a good life. With Shlok's birth in Aug 2009, life has simply turned upside down and he became epicenter of our lives. With God's grace, he did not have much health complications and we chose to move back to India from USA after getting early intervention in first 2.5 yrs. So with Shlok's arrival I started seeing purpose beyond good life. I want to bring meaningful change in special children and their families in some shape and form.

Hope - With delayed milestones, Hope becomes best ally in growth of our children. We as special parents, strive hard to fight for every damn little thing working round the clock bearing the onus of raising a special child with smiling face even at times crying inside. All because we hope that our child will also get equal right to live his life to his potential.

Love - As a parent love is what we expect in return from our children, be it special or normal. I can experience unconditional love from Shlok regardless of any situation. As special children  have limited ability to take in the vastness of pragmatic world, there core remain relatively untouched and what they exhibit is purest love one can find in this world. Perhaps that's what keep us going in longer term.

Objectivity - Not that all is rosy and nice. With Down syndrome’s happy faces comes its share of challenges. By nature, most of the Down syndrome kids are obstinate and impulsiveness. Owing to these characters tics, at times Shlok becomes aggressive and difficult to manage. Those are the times are darkest of the dark and we feel hopeless and helpless.

Another area we have to face challenges day in and day out is lack of supportive government and medical policies. It is absolutely disheartening to go and visit public medical facilities for treatments, assessment or disability certificates. Not that the people working in the system are NOT good. There are multiple aspects like supportive government policies, enough and empowered staff and system-driven execution. This is NOT only limited to special children but really applicable for entire public health system. Not sure if the overhaul would mean partnering with private health care partners at some point. We are fortunate that we can afford private health services for Shlok. There are lot of people seeking help in public hospitals who simply cannot bear this burden. It's absolutely heart-wretching to see their struggle with raising special child while struggling even to meet the ends otherwise.

It seems like handling these situations objectively without getting frustrated is the key on the long winding road of turning our kids into a better person of tomorrow.

Kindness - I believe kindness is Down syndrome person's biggest forte. They are very kind to anybody and everybody without any vested interest. I would say they are rather role-models for kindness and surely a teacher for life.

So the Love and Kindness is what keeps me going through darkest hours ..SHLOK keeps me going through the tough times.

* Sachin Jakhotia / +91- 83088 79900 / sachinjakhotia@gmail.com