Walk a mile in my shoes
See what i see
Hear what i hear
Feel what i feel
Maybe then you will understand
Why i do what i do
Parenting a child with special needs is an intense and a significant experience. ‘Spectrum Of Hope’ is a new feature on our blog through which we want to incorporate parents’ voices and as the title suggests bring a spectrum of hope into the lives of families with children who are differently abled.
This parent interview series begins with Mr. Arun Shakya and Mrs. Purnima I’ve known for many years. Their son Siddhartha who is on the autism spectrum is a lovely boy who wears his heart on his sleeve !
In this interview, Mr. Arun describes the challenging yet rewarding journey of diagnosis, treatment, skills and strategies that they have navigated their son through to support his communication and other areas of development.
1. Please introduce yourself and your son to our readers.
Hello Everybody. I am Arun Shakya. I work in IT field. My wife Purnima is a homemaker. Our son, Siddhartha is 10 years old. We live in Bangalore currently. Siddhartha is diagnosed with Autism and ADHD. He goes to a small school which has resource room set up. He likes it there with school teachers, staff and other children. Currently, in school, he does Grade 1 level studies. He is fun loving child, lives in the moment and always tries to bring smile on everyone else’s face.
2. When did you discover that your child has Autism?
Our story is no different than a typical story of any autistic child and his/her parents. Siddhartha was our first child and he was apple of the eye for everyone especially his grandparents and his aunt. He was healthy and a happy child, growing and keeping up to the milestones as per his paediatrician. He was born in Bangalore in 2007 and in 2010 we moved to Indore due to my job change. We put him to nursery school there at the age of 3 and half. He used to like going to school and we didn’t hear of any issue initially. But around 6 months later, school informed us about his situation. He was not playing with other children. He was not talking to others. He was not following teachers’ instructions. He was not speaking and communicating with anybody in school. Suddenly we realised that he was not social with other children at park play at our apartment. We got little worried and consulted our parents but we were told that boys take longer time to speak compared to girls. School complaints kept coming which prompted us to consult our paediatrician and he, for the first time referred Siddhartha could have AUTISM. So, that was the start of the whole journey then. Panic, denial, trying to ignore, spending hours on Internet to know what it is. I remember, taking a small test to determine if your child is autistic or not. It had 6 -7 questions and around 5 answers to that matched the criteria. It is still overwhelming to recall that day. I went over those questions multiple times, trying to make different meaning so that my answers don’t match. But to no avail.
3. What was your perception of Autism at that time? Tell us about how your perception has changed over the years?
Well, any parent of Autistic child who have been through this whirlpool can write a book on what they went through. It’s not easy at all, even as I type it out now, it’s not easy to control my meltdowns, my emotional turmoil.
One day GOD will have to kneel down in front of me and answer me for “Why me?” and “What did I do wrong? He owes this to each any every parent like me on this planet.
The age of denial was not so difficult, if I see it now. Once we heard of the informal diagnosis of Siddhartha, my wife got into internet, started talking to people and finding out what can be done. And I was not ready to accept that. I was trying to find out other doctors, specialists to consult and more than that hoping to hear something like what our parents had told us and everything is going to be fine. With very limited information from Internet and not knowing where to seek support, I believed that it was temporary disease which would be treated with medicines over a defined time period. I was not in a hurry, not knowing the impact. School also complained but were not pushy on this as Sid was a happy child, not harming himself or others. I was just going through an illustrious career point and happy family, what more could I have asked for? So, it all seemed like this can’t happen to me.
Brutality of the destiny is such that it took nearly 2 years for me to get into some form of acceptance of the situation and ready to explore what best to do for my son. Well it was a phase then when I accepted Autism as part of my life. But somewhere inside me I had this utmost faint hope that someday I wake up to hear and see my son is cured of Autism. We shifted to Bangalore for formal diagnosis, searching schools and therapies and help for our son. It was frustrating to the core when we went around knocking school doors and denied by them every time. Some schools literally didn’t allow us to come inside the school gate also. It was heart-breaking when I used to look at my son and spell out my helplessness to get him admitted to a school and he would just give a glimpse and make me feel” It’s alright” with his smile.
It’s been a rollercoaster ride. Four years since then, it feels like I have graduated now. In the past, Autism for me was something which requires meticulous therapies, all sorts of. I went on hunting for therapies and activities which said, “For Autistic and Special needs children”. Autism was something which needed technical approach to solve. But over time, I learnt, it is not so. Today, I stand to say Autism is a label. All along when I noticed, my son never said he needed help or he was in a dire situation. It was me running around, thinking he needed to be fixed. He used to stay happy and live in the moment; he is doing so now and will be doing so. I have learnt to understand him better and thereby segregate his core problems which require help and those which are his inherent characteristics which we should never try to fix. So when we say Autism, we tend to mix up so much of issues today.
I see hope today in my child. I see him as an individual who has certain challenges, who has certain capabilities, certain likes and dislikes. Through therapies and so called intervention today, I try to help him slowly overcome challenges in his areas of motor skills, balancing, concentration, sensory overloads, muscle toning, and strength in his body. Those are no way related to Autism label for me. Then there are some inherent challenges he has like generalisation, conversation, socialisation, writing, focusing. Now, these are due to his brain wired differently. I feel every individual has these issues to varying degree and my son has it to greater degree. And he needs different approach from people to help him cope with it. They are smarter than the neuro-typicals to understand your body language and approach. So, when you can keep him in absolute ease, win his trust and be patient no matter what, then the channel of communication is established and then it’s up to us to transact over this channel to teach the child. I believe this is the key in reaching to the world of his and then show him the way. You need to reach his world first. Don’t try to drag him out of there. You never can!!
4. How important are therapy services for your child? Has it helped him and your family?
Like I mentioned above, therapies are to address the distinct challenges identified in the child. I really do not like to term therapies are done to address Autism. For me Autism is that overall condition which in our world we say is a life-long condition. But if we are able to see to it, you can actually harness it to develop your child on his core skills and areas of interest. So, when your child is diagnosed, leaving the label apart, it’s important to know the key issues he/she is facing. If your child has sensory issues, then yes sensory integration therapies will help. Speech issues, hyperactivity, balancing, motor skills etc, -therapies will certainly help overcome. And these therapies need time. Parents need to be patient enough to take their child through these therapies and religiously practice the same at home. An hour of speech therapy with therapist a day, isn’t going to help the child. We need to work with the child at home also to help him sustain his learning and expand on that. I like to highlight that, earlier the better. We need to have therapies given to the child as early in childhood, after diagnosis as possible. It certainly helps.
For my son, it has certainly helped. He is lot more calm with Occupational Therapy (OT). We did OT for him since he was 6 years old till now. Initially OT was to get his hyperactivity down. It was intensive with everyday sessions. Now he is going to couple of days in a week, more for his attention and focus and also to develop functional skills with his therapist. He went through speech therapy for nearly 3 years and he is done. Today he doesn’t need one. He is learning to construct his sentences on his own and in school now. The basics of speech, speaking was set right in during his speech therapies. His OT therapist only is doing part of sensory exercises for him to overcome his sensory issue to smell, sound, and touch. He is also doing yoga. Yoga has helped him keep his body fit and flexible. Yoga also improved his sitting tolerance and focus.
5. Tell us about some of the positive lifestyle changes you have made that has helped your family cope with the challenges of bringing up a child with Autism?
Well, our story is nothing new. As special needs parents, stress levels, challenges are all time high. Talk of it and we have done it. I would say still we are trying to find ways to relax and de-stress ourselves. As of now, focus is on providing for our son and helping him out in every way possible.
But yes, if we compare situation 4 years back and now, there is a sea of change. Honestly, the measure of success is something so true and beautiful one now. Professional triumph and rise is something which is so insignificant as it’s never an absolute thing, there is always someone who is better than you.
We found the ultimate happiness in our son’s happiness. We took him to zoo and he was thrilled, never was so satisfying to see him enjoy the day and hug me back in acknowledgement. We have started travelling to places. We take him to adventure camps, resorts. We travel by train and bus. Basically, giving him varieties of experiences, which he loves and learning something from it. It’s so fulfilling. Today, we take him to every place we go, malls, shops, friends place, seminars we attend. Much of our stress was on false hope of cure for Autism and what will he do with his life. When we just shrug off that load of expectations, life is so lighter and we learnt to live with glorious hope and joy ahead. When you look at your child as an individual and nothing else then everything falls in place. I don’t know, if you want to call that as Acceptance. For me acceptance is a big term, we loosely use. So, one and only one change in our life is we turned our head to look at our son as a lovely naughty little mischievous boy and not as a sick and problem child. We changed our perspective and life is beautiful, there is joy and we are actually enjoying this moment of happiness given by God, which otherwise we could simply choose to waste it by mourning on our condition and fate. This change of our perspective, we could by healings we have undergone at Aashwasaan Foundation. It offers healing services which helps to connect you to your soul and guide your soul to lead your mind and body.
6. Tell us about some areas where your child has made progress over the years?
Siddhartha has progressed over multiple areas over the years. There are multiple factors that have attributed to his progress over time. He has been helped by therapies for his issues in speech, sensory, motor skills, hyperactivity, and homeopathy medication for his immunity and gut stabilisation, supplements for his brain development and special education for his academic progress.
Today, he is in school, learning grade I level academics. He has started learning science, social studies also with his special educator.
He has learnt swimming, playing billiards (though not fully following rules of the game). He is able to cycle independently. He is able to speak clearly, express his needs and tries to construct the sentence to express his thoughts and observations. He loves to be on stage. He has done few ramp walks as child fashion show model. He loves to sing. He is undergoing training with music teacher at home. He is learning Yoga with teacher. He loves to visit places, do adventure sport activities of zip lines, climbing, rope walks etc.
Siddhartha performing on the stage & decked out in the best looks for the Fashion Show!
Siddhartha with his special educator in the picture below
He has started showing interest in people and wants to play and be with them. He is showing interest is geography now, wanting to learn about places, flags, oceans etc. The idea is to allow him to exploreanything he wants and not to restrict him.
7. Can you share some strategies or techniques that have helped your son communicate better?
I feel we need to clear that communication is different than speaking. Our children have speech issues but not communication issues. We the neuro-typicals miss out on their communication. It’s very easy to say, I am his parent, I know my child best. But when it comes to really understanding his communication, we miserably fail and that is when the child gets frustrated.
My son fell hard on the ground, when he was knocked down accidentally by a bigger boy in basketball court, couple of years ago. He was literally flung in the air and landed hard on the concrete floor. I saw that and rushed to pick him up. I started asking, if he is hurt. He was prompt in replying no he is not… he is fine and within seconds wanted to get back on feet and started playing his basketball. I couldn’t understand that time but later deciphered that he was rather concerned about his father observing his play, applauding and cheering his perfect throws. He went on to ignore his pain and wanted to continue his performance.
Communication could be as subtle, as this which we need to understand from our children. I failed that time. But today, I try to listen to his every talk. I bond with him like a friend. He calls me ‘baba’ but treatment is now like a friend. I praise him for his success and failures also. My voice is never different while talking to him. This keeps him at peace and comfort. We joke, we talk about places, we talk about his plans, and we talk about funny video clips we saw in internet, we talk about people. And when I say we talk, it’s all in his sentence structures, tense and his frame of understanding. I get myself up to his frame of understanding of this world and everything he says makes perfect sense and I am able to engage in a conversation with him. I am able to put my point of view across. It’s always my eyes are at his eye level for a meaningful communication not the other way.
8. Can you share one behavioural strategy that has helped reduce his problem behaviours?
Your child is at his worst of tantrums and hyperactivity in public place and bunch of crowd gathered to see what’s happening or lot of people staring at your child or you and passing by, nobody willing to help or some with looks of pity, sympathy, curiosity, guesswork and what not !!
So, most of the time, in such a scene, the focus is on the embarrassment the parents undergo, the disturbance which child has created in the mall or shop or that place, the inconvenience caused to public there. And seriously, we miss to see that focus was to be child who is undergoing his tantrums or hyperactivity. The poor thing is experiencing sensory overloads which he is unable to handle and yet no one tries to help him out and rather we try to drag him out, scold him and handle him physically.
I have been through that scene multiple times and did that mistake also numerous times. But over time, with my learning and getting to know my child, my focus is on my child now. When my son is experiencing his sensory overloads and resulting into tantrums and behaviours, I simply let him be close, hold to me, regardless of the people seeing us. At times, I hug him, keep him in my lap on the mall floor and slowly talk to him, pat him on his back. This gives him a reassurance that I am not mad at him, I am always there for him and he can hold on to me and tell what is bothering him. This works!
Next, I have few readymade cards with instructions in bold for him. At times, my verbal command and speech is also disturbing for him. So, I simply show him the card. He reads and knows he has to follow them. For e.g: When he goes to others’ birthday party, he is tensed if they have balloons as decorations, he is tempted so much to open the gifts the birthday child has received. He starts to sleep on the floor, cry if not allowed to. That time, I simple show him the card (mentioning, no problems with balloons, no crying and lying on the floor, and no touching the gifts) before starting for the party, on the way and at the party venue. It helps him to remember his boundaries. So, without giving him the load of processing my verbal commands and my facial expressions when his brain is already overloaded, I try to get his attention out of that situation with minimal load on him. What I have learned is, in such situation of tantrums, if child see our serious unhappy face or gets our scolding and anger voice, its actually adding more stress to his brain and giving him a sense of he/she is not good enough and parents are unhappy about him.
9. What is the best thing about your child you want the others to notice?
Well… there are so many!! And over time, having undergone change myself, I have learnt not to compare. We actually have been taking the healings from the organisation called Aashwasaan Foundation here in Bangalore like I mentioned in above section. The healing is for entire family. It’s through these healings, which has helped to connect myself with my son at deeper level and helped to understand him much better. So, here I learnt Hope and beauty in everybody which Mother Nature has created. So, everything about my son is beautiful. We rejoice and celebrate his presence. He is a child who always tries to bring smile to others. He is happy when people around him are happy. He lives in the present. I would really not want to count the skills and hobbies part to differentiate him. Those don’t really define my son.
Moment we try to differentiate, we are somehow not promoting inclusion. When we say something is best, it is relative, comparing with things which are not best enough. Our children defy such logic of comparison and relativity. So, I prefer to see equality and oneness which my son has taught me. That’s what I vividly see as veil of purity in every special needs child which Mother Nature has bestowed onto them.
10. Your advice to other parents who have children with Autism?
- Your child is your special one, gifted by God. The day you start seeing him as an individual, unwrapped from the cover of your expectations, things will begin to fall in place.
- Don’t push your expectation on your child. First, you shed off your expectations from your child, come down to his level and be his friend. Then you will learn to develop true expectations and also know how to help your child achieve it. That time he will make you happy and enable you to live with HOPE.
- Acceptance is never easy in the beginning but once you are on it, your journey is so beautiful and lively with your child.
- Learn to isolate the core issues which require help like physical issues, gut issues, speech issues. Put him to intensive therapies as those problems can be resolved and will help your child.
- Don’t try to fix Autism in your child. Only Autism which can be fixed is the one within us in parents. Our notions, our expectations and our unrealistic plans, our behaviour and actions which actually hurt, mislead the child. Sooner, we fix these; the child gets better help and is able to cope better in outside world.
- Focus on helping your child develop functional skills. Make him a confident human being.
- Academics is such a waste of effort. Teach him basics and then vocational subjects. Equip them with skills.
- Swimming is really good thing to teach our children. It’s a therapy by itself. Teach them swimming.
- Take them out. Don’t think what people will say or think. The more you put your child in a social situation, more he will learn. Isn’t that a way how everybody learns? Why not give same opportunity to our children?
- There is HOPE, if we are ready to look at it through our child’s eyes. There is light in the smile and there is life, if you can touch your child’s heart with yours.
We (www.1specialplace.com) thank you for your frank and insightful answers and wish you & Siddhartha all the success !