Raising a Child with Special Needs

Last month, I met a couple who had an autistic child. They had just come to seek blessings. Autism is very close to my heart. In 2012, I had created a video to depict the life of an autistic child based on an award-winning story by Poornima Ram Kiran, a noble person. You can watch it here. I can’t exactly say that I fully understand the challenges of the parents and siblings of autistic children because I don’t really have any first-hand experience in bringing up children with special needs. But, prior to renunciation, I’d been closely involved with many autistic kids. Each day is a new day. Somewhere, we all have experienced the burden of “fitting in” when we don’t want to. Well, that’s only one of the pressures an autistic person faces on a daily basis depending on where they are on the autism spectrum.

The parents I met recently were telling me how even today, with all the media and awareness, a significant portion of society doesn’t appreciate, much less understand, their challenges. She said:

I know everyone is busy and they have enough stresses of their own. I’m not expecting them to know what I go through on most days or to pretend that all is normal. Honestly speaking, sometimes I get tired too. And I don’t know how to cope with it. Even he [her husband] goes to work and gets a break, but I’m the one at home looking after our son. I’m not complaining, I know my son is special. But, tell me Swami, will I ever get a break? I know my son can’t match their pace. And why should he? Will they ever understand what it’s like to be in his shoes or how challenging it is for me as a parent?

I listened to her quietly. I knew where she was coming from. Our society is quick to categorize people based on common stereotypes. If you don’t fit in, it will not accommodate you. Sometimes, that can be a good thing, though, because once you fit in a certain way, you are expected to remain that way. Changes in you can make them uncomfortable. We love consistency, constancy and predictability in all aspects of our lives. The less faith we have in the divine play, the less confidence we have in the mysterious forces of mother nature and the more stressed we will be. When we lose touch with the source, we place on ourselves an enormous strain to fix everything. Then, we want to plan everything, know everything, have everything figured out, we want to remain in control at all times.

Going back to my interaction with the parents, when the mother asked me these questions, I got reminded of a beautiful allegory by Emily Perl Kingsley. Here:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

One of the most important phrases in this write-up is ‘the loss of that dream’. We all have dreams. Dreams about how my life will turn out to be, dreams of what all I’ll have, who all I’ll know, dreams about who I will be, about how I’ll love and be loved back and so forth. We often equate our happiness with the fulfillment of our dreams. The truth, however, is that nature does not dream nor does it care much about our dreams. Simply because we have too many of them. Our dreams are our desires we wish to see fulfilled. They are never-ending. We want to see them fulfilled repeatedly, we want to live them every day.

It is perfectly fine to dream. It is only human to feel sad when our dreams are seized by others, or when they are shattered by adversities, or when they are lost to reality. You are entitled to feel low, to mourn your loss. Life, however, is not going to change because we don’t like what we have been served. The only way to be happy is to adjust our tastes or cook our own meals.

Not everyone can have an easy job in an organization. Someone has to do the difficult ones too. Similarly, in the Universal Organization, Nature picks the strong ones to handle challenging tasks. Maybe, it has confidence in your strength and patience that it chose you to bring up a child with special needs. And trust me, when you are destined to fulfill a certain cause of Nature, it will take the intended work from you regardless of your preferences. You may resist with all your might, it will pay no attention to your cries. The moment you accept it, you’re blessed with great capacity and power. You become bigger than your challenges.

Besides, not all days are sunny in winter. When it’s warm and bright, step out. When foggy and chilly, grab a hot drink and enjoy the freshness only cold can offer. In the endless race of chasing our dreams, we forget to see what a beautiful dream life is. Holland or Italy, it matters little so long as you live with a sense of gratitude. Having said that, parents of children with special needs are special themselves in every sense of the word for their immense courage and patience. Unlike a ‘normal person’ they don’t give up even when they know they’ll start all over again when they wake up tomorrow. They deserve every support we may possibly extend them. I salute them.

Our world is one big family and if, as a matter of principle, we take care of the person next to us, more than half of the world’s problems will disappear, most of us will sleep in peace. It’s possible. It’s doable.

Peace.
Swami