My child made me the person I needed to be

DR RADICA MAHASE

Agatha Christie, English writer, said, "A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path.” This week, in celebration of Mother’s Day, I am sharing an article written by Senator Jayanti Lutchmedial, the proud mother of a beautiful little girl who was diagnosed with autism.

“My name is Jayanti Lutchmedial. I’m an attorney and, for the last two-and-a-half years I’ve been an Opposition Senator. My daughter Zivah, is six years old. When she was around two and a half years old, I realised that she was showing some signs of being on the spectrum. My first clue was her delayed speech.

"When I started doing research, I realised that what I thought was just clumsiness could be difficulty with regulating her body movements and poor proprioception which was also a symptom of autism spectrum disorder, so I decided to take her to a paediatrician to have her assessed.

"At first, being told that she was on the spectrum felt like 1,000 daggers to my heart. I come from a family with a strong emphasis on academics, and I felt like it was expected that she would be the same and follow in my footsteps. I instantly thought that she would not be normal and would never be treated as normal. My entire world felt hopeless and bleak. I went through all the stages typically associated with grief: denial, anger, depression etc.

"For some time, I went through the motions of life and internalised a lot of negative feelings. It was only after hearing a sermon in church about the women in the Bible who were chosen by God, that I started getting it together and doing what I needed to do. I reached the stage of acceptance, but not just accepting that things were different, but rather accepting my role as the one chosen by God to be her mother and give her the best life possible.

"I started taking my daughter to different types of therapy and made a lot of changes in my life to make things work for us. I still struggle at times, emotionally, because there are a lot of sacrifices and I feel hampered at times, particularly in pursuit of my career goals. But those feelings quickly dissipate when I see the way she responds to me. Our relationship is unique and precious.

"She is now in her first year of physical school. She previously did one year of online school. I am very fortunate that there is a private school very near to where we live, that accepted her, and she really loves school.

"One thing that I learnt early on is to celebrate her strengths and work to develop them. She is a good reader and recently she has shown an interest in cricket. She also loves music and is learning theory as well as piano, pan and dholak.

"We still have many challenges, like sensitivity to noise and food textures, but we work through them together, with a lot of support from her grandparents.
"Her fine motor skills, needed for writing, are still by far the most difficult part of school.

"A major challenge we had was trying to navigate covid restrictions, as this interrupted her therapy and she regressed. That was very frustrating.

"She also can’t communicate effectively about how she feels, so I was terrified about her getting sick and not being able to tell me. The isolation made some of her challenges worse. Had it not been for covid and the lockdowns she would have benefited more from therapy, but she did benefit in a way, from having more time with me. We went on a lot of walks during that time, and for the rest of my life I would cherish those memories.

"Before Zivah’s diagnosis, I was a perfectionist with a fixed view on so many issues. But being the mother of a neurodivergent child means you have to be patient, accepting, open and honest about yourself and your child. You have to forget about expectations, norms, opinions and judgments and do whatever brings joy to both yourself and your child.

"All I want for my child is joy and contentment. This, to me, is my role as a mother. To secure her happiness and make every opportunity to thrive, available to her.

"In that process, I’ve learnt to also be patient with myself and explore my own path to happiness.

"Being her mom made me the person I am, the person I needed to be. It opened my eyes to a whole different world where everything is not picture-perfect in the conventional sense but can be your version of perfect. It led me to the path of a decluttered life, where happiness is found in simplicity, experiences, self-care, learning and spiritual growth.

"It has also motivated me to use my best efforts to make our society more accepting towards people who don’t fit the mould and make services more accessible to those who need it.
"Most people find it surprising that I am so open about my daughter’s diagnosis, but I see it as a way to show her I am not ashamed, and also to raise awareness.

"My wish is to see a co-ordinated social, educational and healthcare initiative that would create equal space and opportunity for all children, including those who are neurodivergent.

"My best advice to parents who are blessed with children that need a different approach to navigating life is to be proud that God saw it fit to choose you to be their guide, their love, their support and their companions on this journey.”

Radica Mahase is the founder/director of Support Autism T&T