Few years ago after the diagnosis of my daughter, when I was still seeking the answers of some questions and learning to deal with the new place I was in, I met this wonderful parent of a teenage girl with Down syndrome. I asked him how he has managed all these years whereas I even get upset with the glances. I complained how cruel the world is and how I feel scared that my innocent child will have to deal with so many insensitive people around. I also asked him, how does he manage to be so full of life and jovial. He smiled and told me something that was so profound and life changing that it not only helped me gain a better perspective towards the world but also embrace my new situation whole heartedly.
He said that we all parents of special need children should learn from Tom Sawyer. I couldn’t understand what he meant because though I had read Adventures of Tom Sawyer, I didn’t know what possibly we special need parents can learn from a story character.
He told me that while the Advocacy groups, Down syndrome communities, and other online forums on disabilities, are doing a great service but there is a huge gap, the problem is that “We all are trying to convert the already converted!!” First I couldn’t understand but then I realized that he was indeed telling the truth. Yes, the communities are getting bigger and the groups’ larger but most of the time we are not reaching the typical population who are, though not directly connected to special needs yet, are the ones our kids might be travelling, studying or working with in a bigger picture.
He also described how it is our duty as a parent to sensitize everybody around us and reach out to not just other parents but also general population as that is how we can achieve the greater goal of sensitization. And the best way he suggested for us parents to do that? He said we all will have to learn to be like Tom Sawyer in the fence story. For those who haven’t read his story. Let me quickly write it in brief.
Tom Sawyer is a character written by Mark Twain. He is a mischievous boy of 9-10 and in this particular story he is given the task of painting a fence. When he goes out to paint, he sees his friends playing with their toys and boasting about playing and going to swimming. Suddenly he thinks of an idea! He starts to paint the fence with such tranquillity that all the children feel as if painting the fence is the best play in the world. So much so that they all offer him toys if he would let them paint. End of the story, all the kids are painting and Tom is playing with the toys:)
Now I couldn’t precisely understand how we parents could get inspired from Tom Sawyer. But after this parent connected the dots, I could definitely see his point, and agree too! He said, the typical population, who don’t have anybody with special needs in their immediate family, do not have much idea about our journey and think that our kids are a burden and they only bring pain to us. Also a lot of times special needs families stop being an active participant in the social gatherings because of obvious reasons. So, the people at large feel that our children are mere responsibility and we are raising these kids because we don’t have a choice. The truth is that they cannot possibly fathom what they truly mean to us, parents and it is our duty to spread the word about the joy and love we get from our kids. Not only to other parents ( they obviously know) but to other parents who wouldn’t know much.
I totally got sold on to the idea of us parents learning to be like Tom Sawyer and expressing that it is as much fun bringing up a special need child as it is a “typical” one and the joys of parenthood are not changed because of a child’s diagnosis. Only once we share, people would get sensitized.
He said he feared that while we all are doing our bit, but sometimes it gets lost within the community and we forget that there is larger world which needs to be shown the other side of our parenting experiences. We as a community need to take our children out, in to the parks, movies, weddings, places of worship, friends’ houses and every place where a child can go and not make him/her only home bound. We need to talk about our kids and not reserve the discussions only for our community. Tell the world the ups and downs, the wonderful feelings, things and experiences. Stop being embarrassed. and also educate the ones who are ignorant, biased and may be insensitive.
The truth is when we parents proudly embrace and feel “normal” about our child; others tend to do the same. So if we don’t start reaching out to our typical friends, work colleagues or neighbours, and tell them about our fulfilling journey, we will keep converting the already converted.
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Oh MY! So true and speaks to what I learned this last week, too. I asked bloggers "outside" the community to share my "awareness piece" and was surprised myself at how delighted I became that they would share with their audience, their community, a glimpse from mine. More so, however, I decided to read that piece outloud to an audience of other writers and readers in the literary community, not the Down syndrome community. I was not as calm and cool as Tom Sawyer - I can tell you that :) But I hope it opened a window. That is all we can do, right? Sorry to write a book in your comments. Short version - You're right. Let's do this!
Thanks a ton Marda for writing and I am so glad you did what you did. I truly believe that it is very important for us to reach out to those who are not directly connected to down syndrome or disability in general and try change their perceptions and prejudices.
You did a great thing! Glad you wrote here.
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Deepa