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
