“A mother’s love endures through all.” – Washington Irwin
Motherhood is the perfect real-life embodiment of passion, affection, and selfless love all in one. Bringing your own child into this world wakens up the depths of mothers’ inner souls. A child ignites a mother’s life. They love their children wholeheartedly with utmost care and sincerity regardless of the children’s conditions.
In an exclusive interview with the Spectra Team of RACFOSUOC, Mrs. Umara Sinhawansha, who is one of the most celebrated personalities in Sri Lanka, spoke about the challenges and experiences she had to encounter by having a child with autism.
On par with the Autism Awareness day which was dated on 2nd of April, we organized a social media campaign throughout the months of April and May on raising awareness about ASD and now we have reached the final stage of it. And we firmly believe that the best resource we can have in understanding this beautiful spectrum is none other than the strong parents who have experienced ASD firsthand. So Mrs. Umara, we are more than grateful to you for kindly accepting our request on joining us to share your experience!
Nothing in this world can be compared to the love and the exceptional bond a mother and her child share. So first of all I would like to ask how did your life change after having your son, and what kind of magical experience motherhood is?
Having my son was the most wonderful and the best thing, that has ever happened to me and I always say wherever I go that it was the best decision me and my husband ever made; to have a child, and to find out it was a baby boy. It was the most beautiful experience we’ve ever got to enjoy, and we still do. Motherhood is something, that I’ve been blessed to experience and, words cannot describe that amazing feeling.
Being an extremely busy working mom is definitely not a walk in the park. How do you manage to make time for your family amidst your tight schedule?
It is just discipline and I follow a tight schedule. I do not postpone my work; I do my level best or try my level best to finish all my work at that given moment or at the same time. Actually, I don’t postpone anything at all. Well, it’s basically time management. I always make sure I have a tight schedule and it’s prepared properly. I always try my level best to stick to it and I think if we can manage time properly, we can balance everything else within our lives. It is the same with work, my personal work, my lectures, my son’s and my husband’s work, and being a mom, a sister, a daughter, and everything else. You are able to manage all of that once you have mastered the art of time management. And completing my work on the same day is something I really work hard on and yes, it had helped me a lot.
Your son was diagnosed to be Autistic at the age of 2. What were the crucial points that helped you to discover that he was a part of this Spectrum?
Well, it was exactly on his birthday, and the best way I can explain it was like, a switch going off. That’s how I can explain it. My son was an absolutely normal boy. He was talking, muttering words, very intelligent; he used to do all the activities, and choose all 8 colors accurately that we would show him. Everything about him was perfect, running and healthy and, you know, would try to feed him on his own using the spoon and all of that to a sudden switch going off. That’s the best way I can explain it. From climbing up and down the staircase to completely forgetting even to raise his leg up to take the next step forward. Well, then I started thinking that things are not right. He was really agitated when he saw people and started throwing tantrums as well. His entire timetable went upside down, so the best way I could explain it was like a switch going off.
As parents how did you and your husband prepare yourselves to face this situation? And how supportive were your family members in this case?
Of course, we were in denial first. We had heard about autism but we would never expect our child to have autism because he was absolutely a normal kid. He was functioning well, like every other kid. So when his switch went off, surely we were in denial. We initially thought it was a phase our child was going through, he was just growing and these are probably normal things parents go through when kids grow. And then once we couldn’t communicate with him properly, that was when we started reading and researching about what could be the cause. When we read the word autism, we were in denial, but eventually, we had to come to terms and accept the situation, and to see what had to be done to help him was our main goal. We had to keep all of our differences aside and focus on our son.
Talking about our family, they were beyond supportive and of course, all of us were shocked, and yes we all went through a really bad phase as a family, because it was not normal, for a parent to hear that your own child is diagnosed with autism. But yes, everyone else was really supportive and I think that is the strength we still carry with us. Just the fact that we had a family to rely on was an immense strength to us.
Many people misunderstand ASD for numerous other conditions and try to find a cure for this, without having proper knowledge. But ASD certainly cannot be defined likewise. It is yet a blessing in disguise.
What was the procedure that you followed in figuring out where your son stands in this spectrum and how did you help him embrace this condition?
The first thing I did was trying to communicate with my son. And how I could make way through to him In order to communicate with him, to help him out to express himself, was the biggest challenge we faced. More than him embracing the condition, what we realized was, we as parents need to embrace the situation; because without that, we wouldn’t be able to get through to our son. So the first thing we had to do was, for me and my husband to accept the situation, which was really hard. It was a battle for us.
Once we accepted our son’s condition, was when we could actually help him and treat him and get through to him. It wasn’t easy at all. We just took one step at a time and stopped comparing our kids to everyone else’s. That is where we think that things started falling into places and that we realized we need to pay the exact and proper attention to our son. Well, it is what it is. So accepting it was a bit hard, but once we accepted, it was easier for us to embrace the situation and focus on our son and help him to get through. Because what we realized was more than the stress we have as parents, he is going through a lot more as he cannot express himself. So once we did that, we could embrace our son, and it is still in work.
Following that question how important is it for parents to know the accurate proper facts about ASD?
It is very important for parents to know about ASD and do their research, as much as we take our kids to doctors and get advice. As parents, we know what is best for our kids. We need to accept what the doctor says, and what we did for our son was, we sort of molded a certain program for our son because we knew what his needs were and how he would cater to such things.
Simple things like the first thing we did were one of us would go down to his eye level and then act crazy. People still believe I act crazy but nobody truly understood why I act in a certain way because that was the only way we could get through to our son. So for our son to come into where he is right now, we as parents had to play a major role together, not as one person but together as teamwork, not relying on the doctors or nurses in 100% percent. It was us, parents. We needed to step in and help our son because he pays attention to us mostly. So if he would listen to anyone, it would be us. Doing research on ASD has truly helped us a lot and we have come a long way. It’s a daily process where we learn everything. We are learning something every single day, and yes, as parents I believe we should do our research 100%.
I’m sure that your life must have changed a lot ever since. As a mother how did you manage to pull yourself together throughout this rollercoaster of emotions?
It has been a rollercoaster ride. As I said, we have been through the worst but it was again teamwork and understanding between my husband and me. We had to put ourselves and differences aside and, work as a team. Because what we believed was, if both of us are strong, if we are happy, it reflects on our son. If both of us were depressed, or if we are going through a tough tie, that would also reflect on our son. So we made a pact to do whatever we can, to be happy as much as possible. Accept the situation; it is a condition, not a sickness, and have to adjust our lives according to the situation. Once we did that our lives have been amazing and now we are so happy, and that happiness reflects on me and my husband. Obviously, it reflects on our son. So it is again on us, parents. We can choose to be happy, we can choose to be sad, and we can choose to be anything else and it is going to reflect on our son. This is why I always say he is our gift, he is our miracle gift and we are so grateful to have him. He has changed the way we think, our perception of life in a completely different manner. So it is within us. We need to make the change. We need to put some effort and make the change.
Explaining about ASD which is heavy in diversity for a pure innocent young mind is clearly not a simple task. If your son is ever to ask you about the nature of his condition, how would you gently explain it to him?
I would just tell him that he is extra special, and extra special people get a little bit of extra attention because it is true. It is not a sickness. It is a condition and these kids with ASD, are really talented in some extra things. It could be swimming, it could be maths. Actually, they could be geniuses. I would explain it to him and tell people with creative minds, geniuses would always get some extra attention. I think that is the truth.
Through this whole process what kind of an improvement did your son achieve and how did this experience help you improve yourself as a mom?
My son was diagnosed with severe autism but now with a lot of therapy, home therapy, and therapy from school back in Hong Kong, the latest reports said now he has moderate autism. It is a great deal for us. Well, it is the simplest thing. As a mom, you would take your average kid like a normal functioning kid. If a normal kid draws something on a piece of paper, the parent would admire the kid as, “Ah, you are good. That was a good drawing.” But if I and my husband see our son with a pen or a pencil, with a simple scribble on a paper, we’ll just celebrate the entire day. We would bring a cake and celebrate because, for us, it is an achievement for our son. We celebrate every tiny detail about him.
And as a mom, I’ve matured a lot, grown a lot and he teaches me more than I ever thought I had known. I am always constantly learning something from him. Like I said he is my strength, my motivation, my drive, and my happy pill. Just his way of communication is different than an average person, but we are fine with it. I mean he is the best thing that has ever happened to me. I have grown a lot as a person because of my son.
After your encounter with ASD, according to your knowledge, how common is this among kids nowadays?
I am a lecturer and I have a vocal academy based on music. Also, I do music therapy which I learned just because of my son, to help him. And it has helped him a lot. So something I have noticed thanks to my son was, I learned a lot about other kids, other people, and their behavioral factors, and also how to approach them in a way I never imagined. Autism is very common I noticed that a lot. Thanks to my son I recognized such kids even at my academy I try to cater to them musically in a certain manner. Apparently, ASD is very common among boys; 4 times common in boys than girls. ASD can be controlled with a lot of right therapy and proper attention.
As a loving parent what is your message to all the parents out there who are struggling to accept and face the same situation you did?
Please remember we live in a society where we try to please our neighbors, friends, and our family. Well, you need to come out of that little bubble and accept the situation. The more you put an effort to accept the situation of your child, trust me you will find a lot of peace and happiness. That is the only way I can explain it. And when you are happy that reflects on your child. Then your child will grow and show some signs of good development. To me, I personally believe it truly relies on your own happiness. So you need to put in an effort and accept the situation. I understand, it’s the toughest thing to do, but accepting the situation is going to help you grow as a parent and help your child grow. Remember ASD is not a sickness; it is a condition where you will have problems with social interaction, preaching, non-verbal communication, repetitive behaviors, and hardness to express themselves. They have a learning disability, they cannot stay focused. But keep in mind, that your kid is super intelligent. Find out what he is really good at and focus on that. So it relies on you as a mom or a father. If I could do it, you can also do it.
By Rtr. Nishakya Liyanarachchi
Image Credits:
B.M. says
A good read as always 💫❤
Nishakya Liyanarachchi says
Thank you❤️
Beautifully written!
Thanks Hiruni!
A good read💯