A newborn baby is like a miracle of perfection, a bundle of joy, that overwhelms us with love, and gives us a feeling that we have met our reason to live. Our baby like other babies is born with 10 fingers and 10 toes, cries when hungry, and sleeps regularly. Grows from an infant to a toddler, learns to speak, learns the alphabet, learns to hold the spoon, sits, walks, crawls, smiles when you smile, imitates you, hugs you, and so on and so forth, and these behaviors continue to stay for 2 or 3 years.
However, one out of every fifty, what happens?
You notice the child exhibiting unusual behaviors, like not responding to his name, stops smiling, stops interacting, avoids eye contact, repeats words or phrases over and over, getting easily disturbed by some lights, sound, or touch, being emotionally detached, gets rigid with routines, and many many more such irregular behaviors. You see a bubble start growing around him and you find that the child is slowly creeping into a shell. You are shattered, heartbroken, vulnerable, and baffled. It isn’t easy to see that someone you love is having a serious developmental condition. You immediately consult your primary caregiver or your pediatrician. After a couple of rounds with doctors and experts, the baby is diagnosed with autism, a condition maybe you have never heard of before.
This could leave you with a question, “Why Me and Why my Baby”?
A similar story happened with Mrs. Fatima sheikh from Mumbai. Her son Usaid was diagnosed with autism spectrum disorder at the age of three and a half years. It was her first encounter with the reality of accepting the fact that her child has autism. It was very hard for the parents to realize that their child is having a lifelong condition that is going to limit his socialization and also his ability to succeed in life.
But then what helped them was to not look at it as a PROBLEM but as a SITUATION. When you start seeing problems as situations, you start thinking in terms of possibilities. It then becomes easy to find a solution to every situation that comes up in life.
Mrs. Fatima Sheikh did exactly that, she took hold of the situation, and to give her 100%, she decided to quit her career immediately. She took the steering wheel in her hands and was all set to help Usaid live with his challenge and come to par with the world. She started to learn from therapists and professionals, and she started exploring, understanding and reading.
She never burdened her autistic son with any aspirations for him. She would set a distant goal but never looked beyond the next milestone. With total belief in his competency, she always allowed him to take the lead in whatever he loved doing and was happy with it, be it music, performing arts, or visual arts. She says that she got full support from her husband, friends, and her close family, and this collective effort and support from close family and friends made life easier for them. Relatives who were nasty about Usiads diagnosis were kept away from Usaid.
To help him grow and develop, they tried all programs and supports, including speech therapy, occupational therapy, music, swimming, drumming, dance, and even lots of outdoor and sports activities. Usaid was exposed to every opportunity, and if they found him interested in any activity, the mother would immediately knock door to find a suitable mentor to train him for it.
After a lot of experimenting, they decided to specifically work on his strengths and weaknesses. His special interest in arts was detected when at the age of 4, Usaid faced difficulty communicating with words and he instead communicated with them by drawing and sketching in stick figures of what happened in school, at home, and on outings. So they started using art to communicate with him and entered his world. Gradually Usaid started responding, opening up, and started connecting with them.
Usaid showed a love for music and they hired a good music teacher. This de-stressed Usaid and increased his sitting tolerance and focus.
When his passion for dance got noticed, he got all the training required for it. Usaid performed on stage for Shiamak Davar’s winter funk in 2016 and that was transformational for Usaid, a big leap in his self-confidence. They saw him as a completely changed person who came alive on stage, and the overload of light, sound, and chaos did not bother him at all. Dancing improved his resilience, self-regulation, planning, and executive functions. He happily traveled long distances for practice, for shows, and on stage, like any other normal person, he knew his entry, exit, and his position, and moreover took cues from his group and remained totally coordinated with them. Every show is a new exposure and experience for him!
A few of the proud moments for Usaids parents are:
When he scored a 91% in his 10th board, and it was covered in the Times of India.
When he was appointed as a junior editor for Mccann world group in Mumbai, after 6 months of internship with them.
When he gave a presentation at Stanford neurodiversity Summit in 2021 on his experience at the workplace.
A proud student of the Shiamak Davar Dance Company.
Amazing, isn’t it? Even a normal child sometimes fails to get so many achievements in life. Credit goes to the parents who walked their son to success with Love and Patience.
Mrs Fatima sheikh says that if we wish to connect with an autistic child, enter into the bubble formed around him, and when he is ready help bring him out into this world. She says, give your autistic child an opportunity to prove himself by believing in him, by accepting him with his neurodiversity.
So next time when we see a person with a difference, we should not forget that he may have difficulty expressing himself, but he has the same emotions and aspirations as all of us. Let us all pledge to accept them with their specialties with open arms, and help them live their life with dignity and confidence.
For
MARHAM INDIA
allyourtomorrows 