Being Women

Diary Of A Mother Of An Autistic Child

But I also have my meltdowns and my lowest moments. I often do cry for hours, just wondering what will happen to him. This happens mostly after situations when I feel guilty and I feel I failed as a mother when all my efforts to teach him something end in vain. I have heard my relatives discussing my son’s “sickness”. I have heard my mother-in-law blaming my genes. I saw people looking at my kid and being judgemental.

It is for the first time that I have gathered enough courage to jot down, not just my thoughts, but also many conversations that have remained confined within the walls of my thoughts for years. It has been almost four years since I have been labelled as the mother of an Autistic kid. The term autism has become more common and known to people in recent times, but I was absolutely ignorant about it when I was being informed about the same. And, very naturally, it felt like the end of the world that we had imagined for our kid, a world that was supposed to be beautiful and happy. The most difficult part was that I took too long to understand my own child, his behavioural differences, and the ways he looked at the world. And the sadness is that I have still not been able to get over this struggle.

If you ask me about a few instances, that have made me feel miserable and helpless, the struggle that we faced after putting him in the preschool, automatically comes to my mind. We enrolled him in a school as soon as he was two, with the hope that he will learn a lot of things easily in the company of other kids. We let the school know that he doesn’t speak a single word. The school affirmed to us that this would be taken care of and he would start talking soon. Very soon.

One year passed by. The head of the preschool called me to inform that something was wrong with my child and that he would need extra help to do things that kids his age do on their own. We thought he was talking about his speech, and not anything else, and thus consulted his paediatrician to guide us on the same. We were referred to a specialist and the diagnosis that followed shattered us beyond words can ever express.  ‘He is autistic”, is what we were told, and our world came crashing down.

“Will our child suffer all his life? Will he ever be able to lead a normal life? Will he be able to pursue a career and settle down in life? Will he be able to take care of himself if we aren’t around?” So many questions kept bothering us, without any possible answer or solution. 

In the beginning, whenever we would go for assessments, I was expected to answer a few basic questions that any mother would know by heart. But in my case, I realized that most of my answers were “I don’t know”. Strange, right? How can a mother not know what a three-year-old likes and dislikes, what are the things he can or cannot do. This left me questioning my ability as a mother and doubting my motherly instincts and sincerity. A feeling of guilt crept in. Eventually, I started attending a parent training program that gave me a broad idea about how to handle my kid. But it was just the beginning. Initially, the idea I had was that the program would make me emotionally and physically equipped to handle my child meticulously, and my problem would end in no time. That belief and confidence came from the fact that I wasn’t ready to accept that autism isn’t a disease. Rather it is the truth of my child. I would be embarrassed when he wouldn’t greet people or make eye contact.

Occupational therapy and speech therapy were started, as per the doctor’s advice, along with his preschool. And I wanted to believe that these were enough to treat him and fix the few difficulties he was facing.

It was the end of the Academic Year and the Annual day preparations were going on in full swing. One day, when I went to pick him up, the teacher told me that they won’t be able to make him a part of any activity or performance because he doesn’t follow instructions. It broke my heart into pieces, and I could hardly control my tears. I was allowed to bring him to the event, just for him to enjoy, but not as a part of any team. We went to the event. So many kids were there, all ready to participate in the upcoming activities. But my son was indifferent to everything, nothing could make him happy or interested. He was occupied in his own world, in oblivion. I watched the kids on stage, and sadly, more closely the parents who were so overjoyed to see their kids perform.  I sat in the last row, looking at everyone around, full of hopes and aspirations and dreams, unlike me, who didn’t even know whether her son would be able to lead a healthy and normal life or not.

When he turned four, we decided to stop his pre-school and put him in an intervention centre. Luckily, the centre was quite close to our house. Even during those days, if I happened to meet a neighbour, I 

used to lie to them saying that he was going to school. I didn’t dare to tell them the truth.  And more importantly, I didn’t want to explain things to people, who are hardly keen on knowing about Autism at length.   

Putting him in the intervention centre was a very good decision that we took. Our son showed good progress there. He started writing and tried to read as well. When it just started to get better, covid resurfaced. And things slowed down for him again. But within that span of two years, I had met more parents of autistic kids. I realized that I wasn’t alone. The insecurities, the fears, the embarrassments, nothing was just for me. There are many parents facing more challenges than me. Slowly and steadily, I trained myself to understand his ways, his expressions, and his world. And that’s where my new journey began.

Through these four years, getting to know autism has changed my outlook on life. I have been able to guide him to learn things and I am happy that he will be a part of mainstream schooling very soon. We as parents don’t expect excellence. We just want him to enjoy every step of his childhood (haven’t given much thought to adulthood). Every small step we take brings immense happiness to us. We have learned to accept autism not as a disorder but just as a type of personality.  To date, when he is about to be seven years old, we are still waiting to celebrate the day when he independently calls us “mummy” and “papa”.  

But I also have my meltdowns and my lowest moments. I often do cry for hours, just wondering what will happen to him. This happens mostly after situations when I feel guilty and I feel I failed as a mother when all my efforts to teach him something end in vain. I have heard my relatives discussing my son’s “sickness”. I have heard my mother-in-law blaming my genes. I saw people looking at my kid and being judgemental.  

But at the same time, I have a husband who tells me to tell people directly that our son is autistic. I have parents who stay on the other end of the country and never fail to make video calls to see their beloved grandchild. We as parents can’t be ashamed of our kids. Doing what our child needs are more important than thinking “log kya kahenge”. I am still learning to overcome the fear of telling people that my son is autistic. This is the step I am still working on. And now that I have started, I know I will make progress, soon.  

To all the mothers out there, who can relate to these things, just remember you are not alone. But we have to fight our own battles. Every battle is different and unique and so is every child. One thing that is common for all, is love, though they may not be able to reciprocate the way we expect them to. As parents, all our insecurities are natural. All our emotions, both positive and negative, are normal. We are humans. We have our limitations too, and it’s very important that we accept ourselves the way we are.

A strong woman once told me, “Weakness is strength too”. And this made so much sense to me. Truly, every time we are weak, we get another chance to come out stronger. I believe, the more we work on ourselves, the more we can give to our kids. It’s a long journey. Very slowly but very steadily we will surely make progress. With the hope of reaching out to mothers who are on the same journey as mine, I will continue this Autism diary. Love And Light to everyone.

By Anonymous

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