Now And Then: What I Know About Autism
I met my husband at my neighbourhood watering hole, “The Warbler.” I was between flights, as part of the cabin crew for Gulf Air. Who would have guessed that two years later, we would be married.
Five years later, we’d embark on the biggest adventure of all.
Like most couples, we wanted to have a child. Unfortunately, we had to visit more than a few fertility clinics to achieve that. One move back to the Netherlands (my husband is Dutch) and two IVF treatments later, we were pregnant. We were overjoyed.
It was the winter of 2008 when my son was born. There was a blanket of snow all around, and the canals outside our home were so frozen, people skated on the ice. Christmas lights twinkled through the windows of every home. It was into this world that we welcomed our beautiful baby boy, Tristan, on 9 December. He was the best early Christmas gift. Our “snow globe home” was decorated to welcome our new arrival and we listened to carols that sang of the gift of a child. My mum had come to stay with us, and, with Tristan in my arms, I finally began to understand the unconditional love she always had for me.
But we soon realized our winter wonderland wasn’t as picture-perfect as we thought. Tristan’s Apgar score at birth was good, but we noticed right from the start that he was very sensitive to light; he took a long time to open his eyes. When he was 16 months old, he wasn’t pointing, as expected, and all of the babbling he had been doing suddenly stopped. My sweet baby grew silent, and my husband noticed Tristan had begun to spin every toy or object he could find.
There was more. Tristan wouldn’t respond to his name and fussed when we washed hair. He also wouldn’t sleep through the night, waking at the slightest noise. We were all moody and sleep-deprived. My husband kept feeling that there was something wrong; our happy, smiling baby wasn’t making enough eye contact, he said.
In search of answers, my husband did an M-CHAT-R questionnaire (Modified Checklist For Autism in Toddlers, Revised) and encouraged me to do it, too. The more I read, the more my heart sank.
I recognized my child.
I felt anger – anger at God, anger at my husband for his insistence and “insight.” And I felt guilt, because I, his mother, had not recognized anything wrong. I was also in denial. This couldn’t be happening to us, not after everything we had been through to have our baby. Tristan was perfect – we were just worrying and getting stressed over nothing like most new parents . But when the initial shock, anger and denial wore off, I realized that this – Tristan’s Autism – was much bigger than all of these emotions. Grief swept over us, then, as we mourned the child we dreamed of and the person we had hoped he would grow to be. We rationalized that these expectations were a movie in our minds, but logic didn’t help. I felt helpless and powerless because I knew that life was going to be that much harder for my child. I knew, too, that I was not yet fully aware of how much this was going to impact us as a family. All I knew then was that we needed help, advice and direction.
I know so much more, now, because, thankfully, we got it.
Many parents are afraid to turn to one another or to say anything when they suspect a child has autism. In India, there are so many close-knit families that mean well, but may not understand autism. We tend to listen to our elders out of respect and love, and when they say there is nothing different about our child, we want so much to believe them. But the sad fact is that while we delay the diagnosis process in order to avoid the stigma of a label, the child only suffers.
The earlier we help a child, the better a family learns to communicate with him and the more therapy the child can undergo in order to optimize his autism. In the Netherlands, where I live, I was able to reach out to the Centre of Autism, which sent Early Intervention representatives to my home to spend time with Tristan and advise us on how best to help him. While I missed having my support system of friends and family around me, we were fortunate that our home has a network of autism support and communities dedicated to helping families cope and manage autism.
That level of support and guidance can be found in my motherland, though much less easily. We visited Ummeed Child Development Centre in Mumbai, and its specialists examined Tristan and confirmed what their Dutch counterparts had already told us: Our fears were not unfounded. We were commended for realizing something wasn’t quite right at such a young age and for trusting our instincts and were very fortunate to have acted immediately.
Friends and family supported us and created a soft place for me to fall. With their support, I didn’t have to be strong all the time – but I did have to have the courage to get up and figure out not only autism, but also what was best for my child. My Indian roots have given me a solid foundation of hope, belief and love. I never needed that more than I did then, and I am eternally grateful.
When Tristan got his final diagnosis at age two-and-a-half, I was presented with a piece of paper that stated in print: “DSM-4; Classical Autism.” Everything and nothing changed in that instant – everything, because my beautiful boy had autism and we didn’t know how he would develop, and nothing, because he was our love-on-two-feet and we loved him unconditionally. I didn’t know anything about autism then; I know so much more now. And if your child has been diagnosed with autism, that’s the only thing you need to know upfront: That you’ll learn and can navigate autism as a family. It’s not easy, but it is that simple. My son is nearly 7 years old, now, and we have come a long way. We are on an au-some journey, filled with unique obstacles and challenges, but I know this is the single most important role in my life. My au-some mum avatar is multifaceted; I am his mum, his advocate, his guide and his cheerleader. And sometimes, I’m his student. Our roles are often interchangeable – and always awesome.
I didn’t know anything then. All I knew was that if this what fate had dealt us, my mission was to turn this into a winning hand. I’ll be writing more, here, sharing my experiences, knowledge and resources, to help you do the same.
Looking forward to hearing about your adventures, mother courage. Thanks for sharing
So proud of how well you have managed to capture our story. I hope it will inspire parents to accept, act and embrace
A heartfelt & moving story; you’ve captured the essence of the initial reaction & the acceptance journey of one blessed with an autistic child.I hope you continue, with your articles, to shed light & “hold the hand” of other people with au-some loved ones in their lives.
It was a great article, amiga. Hopefully the first one of many to come. T is fortunate with you both. You’re giving him your 200%, and you are growing in your souls. Besides writing so beautifully, you are also changing people’s mindset about autism education and awareness. Many soul callings at the same time. Keep up the good work.
Love the honesty and warmth that you exude through this article. I am sure it will help many parents.
Such and amazing story and so well written. Shalini you will be an inspiration and hope to a lot of families in similar situations. Keep writing and inspiring others.
Shalini your piece was heartwarming and inspirational . I read it about four times and enjoyed it more every time
“Love-on-two-feet “indeed. Love your writing , very moving ♥️