It’s been 365 days before, 365 days, we waited patiently in front of the doctor’s room with him! We were literally sweating because of getting out after the quarantine and was not ready to leave Canadian winter behind! He became increasingly irritated in waiting. After 15 minutes with the doctor, he became agitated. My husband went out taking him and here I am. Facing the verdict. After a year of this journey, time pushed us until that day to accept the fact and face it. Our son’s one-year-long doctor visits, his speech therapy, all pointed to one thing: he is different. While waiting for the lift to reach the doctors’ room, a huge board displayed different symptoms of autism. As we read that together, we exchanged glances. It is what has always been, it is what we already know. For a moment, my life crumbled when the doctor told me my son was diagnosed with Autism spectrum disorder. Despite knowing without knowing for so long, we were not yet ready to accept the fact that our son is autistic. The 31st of January 2021 may have been a day that ushered in a new chapter in our lives that we never expected. The day we ran his blood tests, he sobbed uncontrollably. As they pulled out four vials of blood, he was crying as he always did. But what was I doing? I was also crying. Thinking of all the challenges my little one has to face. Those were moments when I doubted my ability to face them. I can’t remember how many times I cried that day! Fortunately, my husband was calmer that day than I was. He held it together nicely. As for me, I was struggling in vain even when he tried to console me. It was vague, it was blank, and it was heartbreaking. When we slept next to my son that night, we silently promised never to let him go. We promised never to disappoint him and to be the best parents we could be. Me and my husband hushed at night about the things that were coming our way. There are tough days, there are rough days, there are disappointments, there is the wait, the time that has to pass. In this journey, we swore never to get tired or to give up! We both hadn’t slept that night while our son slept soundly. We both listened to our favourite songs while staring at the empty ceiling. A year passed in a blink of an eye!
It is not easy to be a parent. Especially when you have a special child. It can sometimes be overwhelming. The decision to have an autistic child wasn’t ours, but he was made for us. When he regressed after one and a half years of normal growth, we thought it was normal until we were referred to a developmental paediatrician by his paediatrician. We weren’t prepared to do that. Weekly doctor’s appointments, neurologists, speech therapists, assessments, online therapies, in-person therapies. It was all new to us back then. As time went on, however, we were able to adapt to those hectic routines. Then we came to India and encountered more challenges. Daily therapy sessions, MRI scans, routine blood tests, explaining to family and friends, being judged in a common space. After literally 4 months of juggling work and therapy sessions, I’ve turned the hospital corridor into my workplace.
It is different to have a special child. Everything we planned about parenting has to be rethought. To learn how to remove his sandals, Daniyal took 20 days. And it took him 15 days to learn how to put them back on. We have reached the point where counting the days and achieving milestones is pointless. Now we don’t worry about it. We choose to live fulfilling lives despite our circumstances. There were certainly tough days! He was rejected by daycares and playschools, we were forced to walk out of salons without cutting his hair, and so many places treated him differently. So many people looked at him strangely in public places. But that is alright. People live in a world where they are either considered normal or they are not. We receive sympathy and parenting advice for nothing.
This journey, which we are on with our three and a half-year-old, is always a roller coaster ride. Some days are blue, some days are bright, but most of the days are confusing. However, we got into the rhythm. Eventually, we learned how to be kind and patient. We learned to wait for the right moment. We learned to push ourselves hard. We learned to handle hard times. Our days were made happier by staying calm and not complaining about the rough path we took. After knowing that he could turn our entire trip upside down with one tantrum, we still travelled anyway. And we met people we treasure. We ate the food we love. And we felt amazing!
After all, life is to feel amazing!
If you are reading this and you are a parent of a special child,
Dear parent, maybe your child has been diagnosed recently or maybe you have been in this for a long time. Be it ASD, ADHD, LD, you are doing great. Sometimes you may question your abilities, there may be days you’re overwhelmed and pass out, there may be days you want to cry when you get home at night, there may be days you’re confused and don’t know what to do, there may be days you don’t want to get up, but you must. But don’t worry, it will pass. We will look back on those days and smile at what is to come. The struggle is real, but that one moment when our kids reach a milestone, whether it is throwing a ball or brushing their teeth on their own, uttering a familiar word; that is when life begins. At that moment, happiness lies. Take good care of yourself. Don’t stress too much. Take a break, go for a ride, and capture as many moments as you can.
My regret is that Daniyal started calling Mumma, Baba when he was a year old, but we did not capture it properly thinking he would call that later as well. After a few days, he stopped talking and we were back to square one. I had forgotten how his voice sounded. I had forgotten how he talked. Some of the precious moments in our lives have slipped my memory. Capture every moment you can.
We are grateful to many people who have helped us through this process! Those close to us who accepted the truth and treated our son as he is. Those wonderful doctors Dr A Castgania, Dr Shawn, Dr Dicunha Rabello, Speech and language pathologist Lisa Tomilson, Dr Neena Shilen, Occupational therapist Dr Athullya Jayakrishnan, Speech and language pathologist Dr Anju and her team. Our Auto driver who takes him to the hospital every day, Dr Adhil from his therapy room’s next door who loves him like his own, that group of interns, the bunch of nurses and hospital staff helped us through these daily sessions. Thank you to all the kind souls who smiled at us in the malls, in the lifts, in the hospitals, in the metro, everywhere. Your kindness brightened our day.
Lastly, I’m grateful for my husband, who is such a good partner. Without him, I wouldn’t have made it this far. Together is a better place to be. He has evolved from being an impatient guy to a patient and charming father over time. In an instant, I saw him dodging judgements and sympathies and smiling at them. I have seen him getting ready to face anything with me and our little one. From those little assurances to you being my first go-to person even over a long distance, I made it to today and I am grateful that we are in this together!
4 responses to “365 days of being that parent!”
Daniyal is special, yes. He’s one of us. He’s ours 🥰 He’s on the right path. And reading how you both evolved as humans and parents is so wonderful to know. This world needs more kind and beautiful people like you 🥰 We love you, Nimi, Femees, and Our Dany boy 😍
Thank you dear! Thank you for sending positivity and love always! ❤
Love your positivity Nimmi!! You both are doing great. Reading this journey would have evolved you and made you more humble. And thankful for the small things in life. Hats off to your spirit.lots of love, strength to you both our Dany boy. Strength to handle the world 🙂
Thank you Piku! Your words means alot to me always! ❤