– Shireen Joanna is a US-based mother of a special needs child and founder of a Facebook page which “helps parents of neurodiverse children build love, trust and understanding in days”

As a parent of a special needs child, I struggled for four years to find ways to bond with him and teach him right from wrong, socially acceptable behaviour, and honestly, to also get time for myself. Until one day, it dawned on me that none of the experts we had consulted with knew what to do either! The experts had great information on how to manage his symptoms and regulate behaviour. But when it came to practical application and tailored advice for a specific situation and unique child, they fell short.

This is because experts don’t have what parents have — time with the child. When I realized this, I decided to use time as a force multiplier, to enable my nine-year-old son Jacob to realise his full potential. And as I began to use our daily time together to observe and learn, I discovered the following strategies helped me build a bridge across bafflement and chaos, and bond with my son.

Convert time into experiences. In a child with multiple diagnoses, only the parent/primary caregiver knows which diagnosis has the upper hand at a moment in time. On a recent trip to Bangalore, India, I discovered that the flamboyant yet humble Indian auto rickshaw helped me understand my son better. Although autism is his primary diagnosis, he also has ADHD (attention-deficit/hyperactivity disorder). His desperate need for stimulation and constant movement was satisfied, time and again, by an auto rickshaw ride and he began to seek out such rides, at any cost. This goal overrode the tendency of his autism diagnosis to avoid overstimulation. The ADHD in him effectively pushed the autism aside, in favor of thrill seeking. It was fascinating to see the conflicting interplay of two different diagnoses and how the secondary one took over. As you spend time with your child, look for off-the-beaten-path clues (such as the autorickshaw, in my case), that could reveal more about the dynamics of your child’s personality and how these dynamics play out in their behaviour and desires.

Think bold and act on it. Jacob struggles with socially appropriate behavior and social interaction. And yet, he thrived and was exuberant and content in the teeming crowds and blaring horns and chaotic traffic of Bangalore, each time we visited from the US where he was born. I asked myself: why isn’t he in sensory overload? Why is he not overwhelmed? After two month-long visits, I discovered several beautiful truths — he thrives in the bustle of a large city and the energy of teeming crowds of strangers, and the constant casual interaction that cannot be avoided in a populous city. The sheer crowds and noise and traffic simultaneously satisfied his innate desire for social interaction, while absolving him from the pressures of direct, one-on-one social interaction that he struggles with. Had I only heeded the experts, I would not have travelled beyond my neighborhood park with him. But we did travel, because I had what the experts did not have — time with my child. You too know things about your challenged child that may defy diagnoses and convention. Don’t be afraid to act on that knowledge. Do your research. And then add the gold dust that research can’t replace — your instinct. You can then use this knowledge to introduce your child to beautiful and abundantly satisfying experiences that will leapfrog his learning and coping skills.

Look for hidden clues to your child’s personality. It dawned on me recently that Jacob uses several tricks of the mind, as it were, to experiment with capabilities he currently lacks. For example, he always urges me to make friends with random people, especially at church or in a park. I’ve made many great friends this way, but I used to find his request a bit odd, until I understood that he was asking me to exercise a skill that he didn’t possess but eagerly wanted to see in action and learn the skill of making friends. And so, he watches as I make a new friend and is delighted when the new friend and I start talking. He runs around us, playing with a ball, on his own, but looking at us out of the corner of his eye and smiling. When I discovered that he uses these experiences to observe and learn, I was fascinated by his self-awareness, strategic use of my strengths, observations of the gaps in his social skills, and desire to see someone else model this skill, and learn from it. Wow! I would never have paid such close attention to all of this, had I not invested in the boring hours of daily life with him, in varied and diverse experiences (and not only at home).

Encourage and reward creativity. My special needs son made up a character, Covin, some years ago. Covin was a boy who had many adventures with his “Mama” and as Covin navigated his life of adventure, he encountered many “Others” who always “bothered” him and “chased” him. And always, Covin’s “Mama” came to the rescue. The others however, always refused to comply and continued to follow Covin, jumping over his backyard fence, barging into his home, or tapping on his window sill — in an effort to either play with him or take away his toys. I have learned more about Jacob, from the Covin Stories, than I could have from a therapist, a school, or from direct conversations with him. However strange and socially awkward your child’s unique creative ways may be, encourage and reward his creativity. It sends their brains a direct, powerful, and long-lasting message that you validate and believe in them. And this creativity can set the stage for stunning success later on in life.

Embrace reality and be honest. I recently had an honest talk with Jacob about an autistic brain and how it’s different from an allistic brain. He listened and then seemed very relieved that he was just a cool kid with different brain wiring. Be real with your special needs child. Don’t coddle or pity them or hide facts from them. First, face and embrace the reality yourself. On a recent long-haul flight from America to Bengaluru, I saw a father carry his son piggyback and walk up and down the aisle for almost the entire 13 flying hours. The son seemed around 10, a year older than my son, and he presented as autistic, just like my son. As I was trying to manage my own son, it struck me how ‘normal’ he was. He neither grumbled nor showed signs of tiredness nor was he self-conscious or inviting compassion. He was carrying out his parental duties. This father lived within his reality and this helped him conserve his life energy and not waste it on the types of mental comparisons we all fall prey to, from time to time. 

Manage difficult moments with calm. If you embrace the reality of life with your special needs child, you will be prepared for difficult moments. If your special needs child has a meltdown in public or is undergoing a difficult moment, don’t panic or fret. If you panic, you have no authority. Use a calm but firm tone and don’t run after the child if he is trying to run away, unless it’s a safety issue. Above all, don’t lecture, scold, blame, admonish, talk down to, or shame. Keep up a conversation, validate the emotional struggle of the moment, talk with urgency, and direct the child’s attention to something else. Don’t hug or touch if the child doesn’t want it at the moment. Talk later about coping skills. Not when the meltdown is ongoing. Show real empathy, not fake. Wait it out but ensure that the child doesn’t hurt himself. When it has all passed, talk to your child about healthy coping mechanisms to tide over those difficult moments.

Create a consistent flow to help your child learn. You can create ‘flow’ in your special needs child by using the momentum of any present moment of joy and building on it consistently, over time.  Children live in the present by default. If we, as parents and primary caregivers, are present for them and spend enough daily time with them, the momentum of the present will teach us what piques the child’s curiosity and what dampens it. As you spend time doing enjoyable activities with your child, you can begin to lean into what works for him. Repeat these things and you will discover that it initiates ‘flow’ in your child. When you have established this ‘flow’, you can use it as a springboard or launchpad to teach your child valuable coping skills.