Life doesn’t come with an instruction manual, it comes with a mother
A mother shares her story of raising her son with autism, how her own mighty spirit coupled with her husband’s support has helped identify the strengths of her son.
Q. Please introduce yourself and your son to our readers.
My name is Smrithy. I completed my PG in Mathematics and was working as a lecturer in Kerala. After marriage, I shifted to Bangalore with my husband. My younger son Advaith, who is 9 years old now was diagnosed with Autism when he was 2.3 years old. He is studying at Bubbles Center for Autism. I did a course in Special Education in Autism and now work as a Special Educator to assist children with Autism. I have created a Blog (http://smrithyrajesh.blogspot.in/) and a Youtube channel for helping other kids and families touched by Autism (https://www.youtube.com/channel/UCXWlcGOqvwpzmJyiYL8EgZA)
Q. When did you discover that your child has Autism?
Advaith was a good looking chubby boy who enjoyed playing with his brother. All his motor milestones were on time and he started babbling at the age of 9 months. When he was one and a half years old, I noticed a change in his behaviour and he seemed to have lost eye contact and attention. He was not responding to name call and did not bother about people around him. He was engaged in his own way of playing unlike his peers. He played repetitive games like lining up toys and showed specific interest to certain parts of the toys. His speech was not developing and he was communicating using my hand for his needs. But my paediatrician said that there is nothing unusual about him and asked us to send him to a play school. We enrolled him into Euro kids when he was 2 years old. After a month, the school informed us that Advaith is different from other kids and suggested that we take him for an evaluation. At NIMHANS, Advaith was diagnosed with ADHD and AUTISM, when he was 2.3 years old.
Q. What was your perception of Autism at that time? Tell us about how your perception has changed over the years?
When my son was diagnosed with Autism, I felt depressed and found it difficult to accept it. I was not aware of Autism and everyone was pointing to his odd behaviours. Everyone tried to find fault with me, even accusing me of bad parenting and ascribing his behaviour to it. That was the biggest challenge I faced in my life. I myself wasn’t aware of Autism and no one tried to understand me. Comparison to his peers were being constantly made and everyone pointed to the oddity in his behaviours. In the midst of all these negative energies that was thus generated, I suffered from severe depression.
After some counselling sessions from professionals, my husband gave me all the moral support and encouraged me to learn about Autism. I began to slowly accept reality and was able to understand the importance of Early Intervention. I learnt driving and started taking him to therapy sessions. Under the able guidance of Dr. Preeja from Octave, I enrolled myself into a one-year course in Special Education. That really helped me to understand my son and I realised that,” autism is not a disease, it is a disorder”. Prior to this, I was trying to cure Autism and that was a very difficult time in my life. Now I don’t try to “cure” Autism, I accept him and try to identify his strengths. Advaith is excellent in sports like cycling, swimming, horse-riding, basketball and roller skating. Advaith won two gold medals for Roller skating conducted by Karnataka Disability Department in 2016 and in 2017. Advaith participated in the Roller skating Competition conducted by SPECIAL OLYMPICS BHARAT, KARNATAKA and won the silver medal .
Advaith likes to make jewellery and we created a page in Facebook for displaying his products, ”Addu’s Little Creations”.
Advaith is learning data entry programs and other computer skill training programs.
In all the above areas he is showing great interest and social anxiety is a challenge for him. We are working on that step by step with the help of his communication device.
Q. How important are therapy services for your child? Has it helped him and your family?
Parent-professional partnership is very important. I always worked as a co-therapist for my son. Professionals are trained experts, we should take guidance from them, but mothers are the best therapists. A proper Early Intervention programme is very important and we should focus on the communication, imitation, social skills, language skills and prerequisites of learning. Different therapies and therapists helped me and Advaith in this journey and I am always thankful to them.
Q. 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?
My family is my world and we always enjoy our time together with lots of outings, long drives, visits to Resorts, malls, amusement parks, various restaurants and indulging in many outdoor activities. I try to maintain a distance from all the negative people who tried to create lots of problems in my life.
Q. Can you share some strategies or techniques that has helped your son communicate better?
Autism primarily affects a person’s ability to communicate and in the early stages, Advaith was completely nonverbal and was communicating using my hand. We started with sign language, but after a year I realised that not everyone understands his signs and so we moved to PECS and then to an app called AVAZ INDIA. Now Advaith is able to communicate for his needs, initiates interactions and feels more included in society. This has considerably reduced his anxiety levels and we were able to understand more about his strengths and difficulties. Our journey with Advaith has only started, we have a long way to go and now the path is clear. AAC like PECS and AVAZ helped my son with communication. Now he is able to use words meaningfully to communicate. I trained him step by step with PECS at home and created a stimulating environment for communication. Then I moved to an app called AVAZ INDIA and customised it according to his understanding level. Now he is able to communicate for his needs, initiates interactions, is able to work on academics and expresses his feelings using AVAZ.
Q. Can you share one behavioural strategy that has helped reduce his problem behaviours?
Sports activities like cycling, swimming, horse riding, basketball and Roller skating helped him to reduce his hyperactivity. Consistency is the key to success and that’s what I have learnt from my experience.
Q. A fully structured environment and a full day schedule at home helped him to calm down and to reduce problem behaviours.
Also, he became more confident about his skills, when he got appreciation for Roller skating.
Q. What is the best thing about your child you want the others to notice?
Advaith is a sweet child, who loves people unconditionally. He is a gold and silver medalist in Roller skating. He was felicitated by SPECIAL OLYMPICS BHARAT, KARNATAKA for his achievements in Roller skating. He is making jewellery and learning data entry programs and other computer skill training programs. He is excellent in sports like cycling, swimming, horse riding and basketball.
Pictures below (Left to right): Special Olympics felicitation, Silver Medal at State Level, Gold Medal for roller skating competition by Karnataka Disability Dept, 2016 & 2017.
Q. Your advice to other parents who have children with Autism?
Mothers are the best therapists and love is the best method for children with Autism. It is very important to empower ourselves and to advocate for our kids. Please accept these children the way they are. Give them different kinds of exposure and different experiences. Then we can find out their strengths. Each child is different and has his or her own strengths and difficulties. Provide more focus to their strengths and at the same time work step by step on their difficulties too. Work consistently with proper planning. A structured environment will help the child to reduce anxiety and to calm down. Include sensory breaks in their daily schedule and give lots of physical activities. Art, craft and turn taking games are also very important for our kids. Academics is only one part and we need to give equal importance to self-help skills. It is very important to provide tools for communication like AAC, music or art. Both nonverbal and verbal kids with Autism are struggling to communicate and the resultantly show problematic behaviours. So, we should give primary focus to communication skills and then automatically other areas will develop.
We wish your family great success, love and happiness! Thank you for sharing your story with us.
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