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 very little is talked about a parent’s journey from the moment he/she knows 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 a 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 a profound way to accept his limitations, not to fret about things that we can’t control, and channel our as well as child’s energy in doing something constructive.

I was curious about how parents cope with the early days of shock and denial when they 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 “the 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 a deeper level of mind, there is no escape from the spiral of negative emotions. 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 into the 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 a lot quicker, perhaps a 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 a society with greater acceptance for disabilities. Still, it took me a long time 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…

Check out another blog on A Dad’s Role in Raising a Special Child!