Matru Devo Bhava: A Maa’s Role in Shaping Special Child’s Life!!!

In Indian culture, a mother has been revered as first and foremost GURU in one’s life. It is absolutely crucial how this potter shapes the child in early days of a child. But perhaps it is more so for a special child…

Just few days back I got a call and WhatsApp message from Nayi Disha that they are planning to compile a unique video capturing expression of various parents for following set of questions – 

• Remember the first time your saw your child

• Think about the first time you heard them laugh

• Recall the first time they called you Ma or Pa

• Look at them and think about what they mean to you

• Think about your favorite memory with them

When I was talking about this message with Shlok’s mom, two things happened. Sheetal was already off to her vivid memory lane thinking about those situations a decade back when Shlok was born in USA. On the other hand, I was able to remember the factual/medical aspects but hardly could recollect emotional cues. Perhaps it’s a guy thing.😊 Jokes apart, we went on to make a video clip capturing Sheetal’s expressions for those memories and now the video clip itself has become a nice memory for the times to come… ( here is the link for Nayi Disha’s compiled video!!!)

I was stunned to read about a recent study on Boston University’s website which mentioned that mothers of special individuals had levels of stress hormones comparable to soldiers in combat. Finances are often a source of stress as well. Usually the mother, sacrifices her career to attend to the child’s needs. The emotional impact is enormous and may include:

• Fear and worry about:

• The child’s pain and suffering

• The child’s future

• The question of whether you are doing enough or doing the right things to help the child

• Guilt over:

• The limits of your ability to protect the child

• The loss of attention toward other children, spouse, and aging parents

• Your jealousy and resentment of those with “normal” children

• Feelings of isolation because you:

• Miss out on many family-oriented activities because of child’s disability prevents her/him from successfully participating

• Encounter criticism and judgment of your parenting from others who don’t understand your child’s disability

• Feel like an outsider around parents of typically developing children

• Grief over:

• The loss of hopes and dreams you had for the child

• Not having the parenting experience you’d imagined

• Recurrent reminders of what your child misses out on leading to chronic sorrow

I often mention that we were lucky to have Shlok born is USA as we could get benefit of home-based early intervention as well as more practical approach to handling a special child. But more importantly, Sheetal has always stood strong and tall for Shlok for most part.. Unlike me, she is doer rather than a thinker! Her approach is simple. Just do what requires to be done and enjoy life!!! Another interesting aspect is Shlok learns by doing things by hand (I guess, kinesthetic mode is predominant for down’s syndrome kids). Another important aspect is Shlok does relatively well-behaved if he has a set routine. So she keeps herself occupied with various activities for Shlok and try to maintain orderly daily routine for him. There has been interesting incidence lately that shows power of forming good habits. During Covid-19, we had to train him to use mask and Amsarveda Mouth Sanitizer just for 2-3 weeks. He likes the bitter-sweet taste of turmeric-licorice spray. Now at times we forget, but he would always remind us to do follow the regimen!!!

As Sheetal puts it rightly, every special child is different, and every family’s circumstances are different. So, one solution that fits all is surely not possible. But she made sure NOT to pamper Shlok out of undue sympathy and treated him more so like a normal child. Yet she has been meticulous to maintain good habits with healthy food, good sleep, and personal care. She makes sure that Shlok can explore things on his own and not to get into the trap of being overly instructive to him.

Parents of children with special needs are often exhausted and frequently become depressed. To be sustained through the marathon of caring for a child with special needs, it is essential that parents attend to their own needs. I have seen Sheetal’s efforts to balance out her passion as a make-up artist and a special mom. And it has actually helped he to become better person. Now she is at budding stage to pursue a career as a freelance make-up artist. The pursuit that keeps her happy is actually the engine for happiness for rest of the family…

P.S. Also visit my blogspot to read more articles on https://shlokabiity.blogspot.com/

 

Sachin Jakhotia, Bavdhan, Pune

I would love to hear your comments and suggestions. Please contact on 8308879900 / shlok.ability@gmail.com

How to PARENT a KID with Difficult Behavior!!!

As a parent of a special child, there are various challenges at different points of time. But the most challenging aspect on daily basis that I struggle with Shlok is handling his difficult behaviors. Most of the times, he is happy and manageable. But there is perhaps an instance or two on daily basis when he turns defiant and difficult for short while say for 15-20 minutes…

Most folks would think-‘kids are kids’ and by the very nature they are bound to exhibit difficult behavior at times. At times Shlok turns defiant and mischievous like any other growing kid; but perhaps the degree and frequency of his misbehavior tends to be more. But the most remarkable attribute of his nature is he does NOT hold anything against anyone and always be kind and sensitive to everyone’s pain around him. I am listing some of the situations/areas where we have a recurring history and he will continue to exhibit in the foreseeable future until we address it in cohesive manner to fade out eventually. Some of these traits may or may not be common to other developmental disabilities.

Wandering or sneak away in crowded places

Spitting to show his resistance to a situation

In case of disagreement, sometimes he would turn physically and verbally aggressive.

Mood swings

Compulsive behaviors to hold car keys or sit in any vehicle of known or unknown individual, wearing wrist-watch even though it is not allowed in his school etc.

A child with a Trisomy 21 diagnosis -- Down syndrome -- often has a variety of health issues that may lead to behavioral problems. As the research by the University of Maryland Medical Center suggested, we have to give due consideration to -

Developmental vs. Chronological age – In Shlok’s case, chronologically he is 10 but having a developmental quotient (DQ) of about 65, his mental developments appears to  be around 6-7 years.

Common behavioral issues of a Down’s syndrome child such as a short attention span, impulsive behavior, slow learning and poor judgment

Communication and Learning - Children with Down syndrome may exhibit speech and language delays. Sometimes such kids may display temper tantrums as they get older, often arising from anger and frustration with difficulty in communicating.

Over the period, I have realized that as parents of special children, we tend to be more instructive, protective and many a times stressed out while dealing with our kids. Child’s bad behavior is an indication that perhaps we first need to introspect on our own mindset and whether we are approaching child’s upbringing in constructive yet fun manner. To me a parent’s role could be perceived as -

Patiently – This is most important quality. Normally mothers are more patient.

Assure – There will lot of situations where kids will doubt themselves. So we must dispel the doubts and try to assure our kids along the way.  

Revitalize – I am suggesting revitalize instead of rehabilitate since that kind of positivity is required whether your child is special or normal.

Envision- We must envision a better tomorrow for our kids and we must genuinely believe into it. (Recently watched a documentary film on Netflix “Crip Camp: A Disability Revolution” focuses on campers who turned themselves into activists for the disability rights movement and fought for accessibility legislation in USA)

Nurture – As the dictionary meaning goes, we need to take care of, protect and develop.  

Train – Being a special individual, there are many obstacles even in routine activities that everyone else takes granted for. So we need to identify and train our kids so as to be prepared to face the challenges of tomorrow.

Out of all these things we have intentions to address all but the first aspect which is patience. Mind you, only patience would not suffice as many a time parents of special children feel helpless and victimized. In Sanskrit there is precise word for it – Titiksha. The closest we can get to Titiksha is Endurance. If we take care of patience then everything else should fall in place eventually!

Over the period, I have developed a thumb rule for myself – 10-20-30!!! In every situation I will offer 10 seconds of patience to my child for every minor misbehavior; 20 minutes once in a day for recurring defiant behavior and 30 days to observe a deeply rooted bad habit. The whole point is we should have a better understanding and accordingly maneuver our path through the woods in focused yet fun manner. Now this is what seems to be working for me. There could be other variations that others may want to try out whether it is 10-10-10 or 20-20-20 or so on or so forth… I would love to hear out what works for you. I can be reached at shlok.ability@gmail.com

Vocational Training for Children with Different Needs – How and When to Start?

It was good eyewash to attend yesterday’s webinar organized by Nayi Disha and presented by Dr. Nina Vaidya, a very apt person for the job! Dr. Vaidya is pediatrician from Navsari(Gujarat) and mom of a special 27 yrs daughter, Palak who she has successfully trained to work in clinical environment !!!

Of course it is difficult journey for a parent to accept his/her child in first few years after the diagnosis. However the real battle begins on how we approach this question of at least partially main-streaming the child with society through various means including meaningful vocational activity. Every parent would unanimously agree on the benefits of vocational training during teenage years. However, Dr. Vaidya pointed the pre-vocational skills is an important area where lot of special parents fall short of.  

Dr. Vaidya shared a comprehensive check-list or pre-vocational skills that every special parent has to pay attention. It includes various aspects of how independent our child is to face the uncertain and maneuver through the dynamic world at large. Some of the key points are – 

• Child’s understanding of private vs public and acceptable vs un-acceptable behavioral norms in society at large

• Ability to comprehend time, modes of measurements and directions, maps & traffic signals.

• Understand importance of money, safety of money and some sense of daily requirements in terms of expenses. 

• Appropriate communication skills to handle situations in workplace and social circles. 

• How to seek help at the time of crisis and to some extent develop understanding about situations that jeopardize personal safety

• Learn to adapt own behavior with the requirements at workplace and also some sense of flexibility and prioritizing in given environment. 

Dr. Vaidya had given one example of her daughter, Palak when she started to work at her clinic between 9 am to 1 pm. Generally, special children tend to be very methodic and tend to be bound to their routines meticulously. As Palak was working as assistant at front desk and cash collections, she would leave exactly at 1 pm regardless of patients waiting at the clinic. Later on Dr. Vaidya had to train her for few weeks for her to understand and develop flexibility. This is a very simple example; but gives a sense of how every smaller aspect needs our attention and patience to work through. 

For developing required sense, vision and resolve she posed few questions that we as special parent need find our own answers and accordingly make a sustainable financial plan. 

• Why do we want to impart vocational training to our child?

• What portion of his/her expected expenses that child could earn on his/her own?

• How to we plan to address the shortfall in the expense. In other words, do we have a financial plan in place? In a way, it is a better question to grapple with instead of worrying about “what happens after us?”

For a special parent all this seems rather daunting. Obviously there are lot of merits to train our kids vocationally whether keeping them involved meaningfully or improving their self esteem & confidence.   But the point is it’s a very gradual process; so we have to commit to it from the get-go. Obviously first 8-10 years would be spent mainly to get the child settled in age and IQ-appropriate educational set up. However as Stephen Covey, the famous author of “7 Habits of Highly Successful People” suggests, one needs to begin with the end in mind. So it would be ideal if parents could devote themselves to develop pre-vocational skills in child as early as 9-10 years of age. We have to involve our kids in various day to day activities, give them lot of exposure to various situations and slowly but surely nurture them to become responsible individual regardless of the types of job skills they could delve into. 

Finally, lot of parents fret about choosing right vocation. Children with developmental disabilities tend to do well with manual and repetitive tasks which require hands-on activities. There could be many potential vocations that would serve well whether it is in hotels, food industry, house-keeping / cleaning industry and so on. One of the key personality traits these individuals exhibit is they like to work diligently with lot of instructions without getting impatient. This makes them suitable to work as assistant or helper in any hands-on activity!

Personally I have visited a factory in Pune area where the owner, Mr. Subhash Chuttar has trained more than 50 special individuals to work in the factory as machine operators and they are working full time making automobile parts for MNC companies like Bosch and that too with zero rejection (Zero PPM). Unbelievable, right!!! All credit goes to Mr. Chuttar and his patience to work through all the hurdles in training them which takes rather long time. He gleams with smile and adds “Once trained, these guys are most dependable and will never put you down”  

One of the very well known special educators in Pune, Mrs. Sunita Lele once pointed out to me that special parents often talk about their right to have work opportunities for special children; but is it NOT our responsibility to make our kids more employable first. We were talking about Lemon Tree hotel in Mumbai employing special adults for house-keeping work. 

Along the same line, Dr. Vaidya suggested that it is ok to keep searching for the vocation our child would enjoy and be interested in. But we should always try to balance out with availability and safety in addition to more practical aspects such as remuneration, distance and working hours. She added, “It’s even more important to create correct mindset and attitude of children so that they become employable and productive citizens of tomorrow no matter how miniscule their contributions seems!!!”

-- Sachin Jakhotia / Bavdhan, Pune

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I would love to hear your comments and suggestions. Please contact on 8308879900 / shlok.ability@gmail.com

A Musical Journey to Acceptance of a Special Child !!!

Just around “Down’s Syndrome Day” last month, I had penned an article about acceptance of a special child. Now that we are in the middle of a nation-wide lock down for last 3 weeks, there is lot of anxiety and restlessness in society at large. When things are rather somber, music and humor or for that matter any form of art could provide us with much needed fresh air and positivity.  With that context, I just thought of compiling a play-list of song that could give a good sense of up and downs that a parent goes through while raising a special child!!!

For any parent it is most devastating while receiving the news about child’s diagnosis and lot of pain strangles our mind with why me? Or why us ? questions. In those days, the songs that I listened most frequently was a song by Jagjit Singh and the lyrics were so close to my heart that later on I listened lot of songs by the lyricist, Nida Fazli 

Jeevan kya hai....
Chalta phirta ek khilona hai
Do aankhon me ek se hasna ek se rona hai

Jo jee chahe woh mil jaaye kab aisa hota hai
Har jeevan jeevan jeene ka samjhouta hota hai

In those early days of shock and denial, lot of sad songs of Kishor Da or Rafi sahib automatically got added to my playlist  

• Yeh Jeevan Hai Is Jeevan Ka Yehi Hai - Yehi Hai Yehi Hai Rungroop Thode Ghum Hain Thodi Khushiyan Yehi Hai Yehi Hai Yehi Hai Chaon Dhoop

• Zindgi Kaisi Hai Paheli Haye, Kabhi Toh Hasaye, Kabhi Yeh Rulaye

• Zindagi ka safar, hai ye kaisa safar… Koi samajha nahin, koi jaana nahin… Hai ye kaisi dagar, chalate hain sab magar …Koi samajha nahin, Koi jaana nahin

• Raahi manava dukh ki chinta kyon sataati hai dukh to apana saathi hai

• Kabhi Khud Pe Kabhi Haalaat Pe Rona Aaya

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 this stage, parents start subscribing to both positive and negative emotions and songs too –

• Chalte Chalte Mere Yeh Geet Yad Rakhna..Kabhi Alvida na kehna

• Aanewala pal, jaanewala hai

• Ruk jaana nahin tu kahin haar ke …Kaanton pe chal ke, milenge saaye bahaar ke…. O raahi, o raahi

• Git gaata hun main, gunagunaata hun main Maine hasane ka waada kiya tha kabhi Isalie ab sada muskuraata hun main

• Zindagi Ki Yehi Reet Hai Har K Baad Hi Jeet Hai ..  Thode Aansu Hain Thodi Hansi Aaj Gam Hai To Kal Hai Kushi

One of the new age songs at this point was – 

• Har ghadi badal rahi hai rup zindagi Chhaanw hai kabhi, kabhi hai dhup zindagi Har pal yahaan ji bhar jiyo Jo hai samaan, kal ho na ho

Finally, when acceptance sinks in, parents are ready to accept the new reality, even though it's not the one they wanted. At this point, emotion remains positive for most part. 

• Thoda hai thode kee jarurat hai …Jindagee phir bhee yaha khubsurat hai

• Main Zindagi Ka Saath Nibhata Chala Gaya …Har Fikar Ko Dhuen Mein Udata Chala Gaya

• Kitne bhi tu kar le sitam, has haske sahenge hum…Yeh pyaar na hoga kam,  Sanam teri kasam

And my most favorite these days has been – 

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…

I am sure when the child grows up, he/she will have own sets of experiences and emotions, the song that will come back and we better be prepared to 

Main Aisa Kyun Hoon ..Main Aisa Kyun Hoon …Main Jaisa Hoon Main Waisa Kyun Hoon

Karna Hai Kya Mujhko Ye Maine Kab Hai Jaana..

Finally, raising a special child is life-long journey and one has to keep things in context. For that matter, I would end this article with one of my most favorite peom from “ Zindgi na Milegee Dobara” – 

Jab jab dard ka badal chaya,  Jab gham ka saya lehraya,

 Jab aasu palko taq aaya,  Jab yeh tanha dil ghabraya,

 Humne dil ko ye samzaya dil aakhir tu kyu rota hai,

 Duniya me yu hi hota hai.

 Yeh jo dard k sannate hai, wakht ne sabko hi bate hai,

 Thoda gham hai sabka kissa,  Thodi dhup hai sab ka hissa,

 Aankh teri bekar hi nam hai,  Har pal ek naya mausam hai,

 Kyu tu aaise pal khota hai,  Dil aakhir tu kyu rota hai. 

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I would love to hear your comments and suggestions. Please contact on 8308879900 / shlok.ability@gmail.com

P.S. I have created playlist of above songs on Gaana.com. Feel free to listen to this playlist. 

https://gaana.com/playlist/sachinjakhotia-amusicaljourneyofraisingspecialchild-k3yjyvn5wr

Making the best of ISOLATION during CORONA outbreak!!!

Lately Corona (Covid-19) virus has wrecked havoc on entire world affecting more than 2 billion people. No wonder social distancing has become new NORM and like never before, ISOLATION is providing unique opportunity to interact closely within family to bring about different perspective towards life.

As anyone dealing with stock markets could relate with the wide-spread retracement in stock prices and experts are suggesting reviewing and rebalancing investments. Along the same lines, perhaps this is the time to take stock of abilities and behavioral peculiarities of our kids on one hand and looking critically to our own temperaments and biases on the other. For that matter long-term investing could very well be a good analogy to raising kids so as to bet on tomorrow’s winners!!!  

During a recent program at Phoenix school, Dr. Suneel Godbole had made interesting comment that children with sub-par mental abilities tend to do well with the activities requiring touch, smell and taste senses as compared to white-collar jobs which require extensive use of visual and auditory skills. We all know that our kids require multi-modal teaching/training techniques. For Shlok, we observed he likes to do hands-on activities such as helping in kitchen, home chores, serving at dinner table etc. So his dominant learning mode seems to be kinesthetic.

In line with that we are encouraging him to play mechanic set wherein he can make various car models with nut-bolts, screw-driver and spanners. In general, I observed ebbing of interest after few weeks whether it is dance, music or even sports class. So far Shlok has always responded with enthusiasm for mechanics of the mechanical objects. So surely this would be one focus area to work with him in long term. Other aspect, we need to be conscious of is what is age-appropriate attention span. For Shlok, we observed he responds well when we do any specific activity for 10-15 minutes. We believe every 6-12 months we can slowly extend his attention span by few minutes…

To be able to work independently in outside world one has to attune to social expectations at large. So behavioral peculiarities is another prominent area to pay attention. I am calling it peculiarities because often it seems to be attention-seeking misbehavior on Shlok’s part. Shlok exhibit multiple of such behaviors – Spitting when angry, mischief with friends/siblings/cousines or even sometimes sneaking away in crowded public places within a blink of eye.  Just yesterday he sneaked away in our neighborhood while we have been searching for him all over. After 8-10 minutes I got call from a gentleman couple of lanes down informing that Shlok is with him. We felt relieved. But the point is we need to be vigilant and prepared for such situations. To my surprise Shlok had informed his name and also shown his locket to the stranger. Knowing Shlok, we always keep one plastic key-chain as locket with him (my mobile number and Shlok’s UID/Aadhar number written in there). When-ever we go in crowded places or weddings etc, we make him wear a watch with SIM card so either he calls us or we could reach him.

These kinds of instances are very difficult to keep calm as opposed to scolding him. I was able to keep a neutral temperament and after couple of hours when everything was settled, I praised Shlok for his good behavior of showing phone number to the stranger. Later in the day when he was happy and more receptive, I told him a social story on why he should not go out without informing. We are also trying him to memorize critical information as phone number, address etc. Of course, there is no alternate to being more vigilant in first place but we still need to have strategies in place as fall back option.

As per Indian culture a day is divided into eight praharas (of three hours each) or thirty muhurtas (of 48 minutes each). So while I am working from home, our focus is there should be at least 10-15 minutes of an activity every 3 hours so we remain in sync with the child. It is even better if we can use at least 2-3 instances every day to form a positive/healthy habit. With our kids forming any new habit is bit difficult. But if we persist long enough, we would be rewarded richly as the kids themselves remind us to do those activities. For example, I am teaching sun-salutations for last 10 days and I need to take extra efforts for him to follow. But for last couple of months, Shlok has been reciting Hanuman Chalisa in the evenings with his mother and chanting Om prior to going to bed. Now that he has gotten used to it, he only reminds us. Another fun activity Shlok likes to do on my laptop is drawing shapes and coloring in “paint”. He is now doing a lot of it independently.

As I always feel, we as parents are custodians of our children’s future. We gotta do whatever it takes to move forward an inch at a time!!!

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