Opening doors with kindness

I remember the day authorrsquos daughter Jayanthi was diagnosed with autism Just two years old she sat next to me in the car We were on our way to Ummeed Child Development Centre My heart was thumping I could barely focus when the driver asked me where we were to go I just wanted to get to Ummeed and convince them that the strange sounds that Jayanthi made the way she lifted her hands to her face to stare at her fingers her complete focus on herself her lack of response to her name were not of any significanceI felt a wave of embarrassment as the driver turned to look at Jayanthi due to the sounds she was making and I tried to get her to stopThis was my first step into autism parenting The beginning is traumatic socially debilitating and takes a toll on every relationship The parent cringes when his child is the painfully odd one out at a party When the parent canrsquot make a simple introduction to his friends ldquoThis is my son Gauravrdquo because he knows Gaurav will be looking on blankly At a family wedding his child is the only one who does not mingle with his cousins He uses the bathroom with the door open even at other peoplersquos homes Every awkward behaviour every strange sound every anomaly grates on the feelings of a new autism parentThe embarrassment is acute the hurt deep and the smile plastic Parties are endured rather than enjoyed as the parent deals with a child who through his behaviour announces to the world I am not the same as youWith the passage of time the parentrsquos hurt is washed away by the childrsquos innocence Her despondence is converted to courage when she sees her child slowly learning Rays of hope fill her heart as she sees her child draw or paint or dance or singA new resolve strengthens her shoulders as she starts reading about autism attending workshops and learning ways to decode her childThe same parent calmly tells Jayanthi as she hums loudly in an elevator full of people ldquoJayanthi quiet timerdquoShe stands outside the washroom in a mall with no discomfort at all and clearly instructs Jayanthi ldquoPlease lock the door Do you need helprdquoShe smilingly approaches her host at a party ldquoJayanthi and I will sit in that quiet corner Is that okayrdquoThe same parent firmly tells Gaurav as he decides to masturbate in a mall ldquoGaurav please go to the bathroom not hererdquo and waits for him to stop and escorts him to the bathroomShe uses all her understanding and reflexes when Gaurav starts weeping at a family wedding and wants to go home that very moment She calmly apologises and leaves with her sonShe goes home helps her child unwind makes herself a drink of cocoa or Thums Up or wine before hitting the bed Yet again before her head touches the pillow she makes her way to her sleeping child who is no longer a child Looks at his wan face puts her hand over his locks of hair presses her lips to his forehead sheds quiet tears for their shared journey that is sometimes full of hope and sometimes undetermined sometimes charged with achievement and sometimes confused and irresoluteAnother day begins the next morning She picks up her phone and starts typing on her parent WhatsApp group ldquoI had a problem with Rahul at a party last nightrdquo She sends an email to her childrsquos therapist ldquoRahul needs helprdquo She calls up Forum for Autism ldquoI am an autism parent Can I get a counsellor I need to talkrdquoExcerpted with permission from Whatever It Takes Autism Parenting and A Dream by Sangeetha Chakrapani Westland BooksApril 2Is observed as World Autism Awareness DayDo you remember that moment in school when you could not give the right answer immediately Before you could try one more time the teacher patted you kindly on the shoulder ldquoNever mind next time okayrdquoThe frustration I needed only one minute longerThis is what happens frequently to many people with autism and their familiesA family is out with their son Rohit who has autism They meet a good friendldquoWow What a surprise to see all of you hererdquoA big round of hellos followsMom ldquoRohit look whorsquos here SheenardquoSheena ldquoHi RohitrdquoMom ldquoRohit say hello to SheenardquoSheena ldquoHi Rohit hirdquoDad ldquoRohit Sheena is saying hi to yourdquoSheena ldquoItrsquos okayrdquoSheena pats Rohit on head or shoulder or some other available body partA big round of byes followsIn this melee of conversation Rohit did not get a chance to say hello and Sheena did not get a chance to connect with RohitSituation 2ldquoWow Imagine meeting you hererdquoldquoHello Hi How are you doingrdquoSheena ldquoHello RohitrdquoPauseMom ldquoRohit letrsquos say hi to SheenardquoSheena ldquoI also like talking with you RohitrdquoPausePausePausePause for a few precious secondsThe sweetest of smiles breaks out on Rohitrsquos face the equivalent of a hundred hellosOr Rohit extends a hand tentativelyOr Rohit says a ldquohirdquo that is just about audible but sounds like Mozartrsquos Symphony No 40 in G Minor K 550 to the motherOr Rohit looks deep into the Milky Way but says a loud ldquohirdquoOr Rohit looks straight into Sheenarsquos eyes and says a crisp ldquohirdquoOr Rohit just glances at Sheena mdash one more way of saying ldquohirdquoThis simple exchange of greetings is so important for people with autism To be given the time and the opportunity to1 Process that somebody known to them has suddenly come up2 Process the identity of that person3 Process the greeting that person is making4 Process the suggestion made by the mother5 Convert the suggestion into an actionIt is not kind to shush a person with autism when he is trying to say or signal somethingIt is not kind to pat him on the head and move awayIt is not kind to expect him to respond instantaneouslyIt is not kind to bombard him with multiple instructions such as ldquoSay hirdquo ldquoCome onrdquo ldquoQuickly say hirdquo ldquoChalo hi bol dordquoBeing kind is when you make an effort to look into Rohitrsquos eyes greet him and give him a few seconds of quiet time to acknowledge youBe that person in Rohitrsquos life who opens gateways of communication with him by gifting him a few seconds of your time and your acceptance