Growing Up With Advaith by Smrithy Rajesh

    Having to raise a child with a serious disability is something few parents are prepared for. Confusion, anxiety and frustration are their constant companions. But intelligence, courage, persistence and determination can change things for the better. Here is the heart-warming story of how a young mother sought out the best for her son, whether it was from institutions, technology, professionals or just her common sense. 

 

“I am Smrithi. I grew up and studied in a school in Thrissur district.  After completing M.Sc in Maths, I was working as a lecturer.  After marriage, I settled in Bangalore with my husband. We have two children: two boys. Adithya who is thirteen years now, studies in eighth standard. Advaith is ten years old. Advaith is diagnosed with having autism. As a baby, Advaith did not face any developmental delay. It was between one and a half and two years that he started crying for everything. He would not respond and would go into a world of his own. We took him for diagnosis and he was diagnosed with having autism, ADHD and SPD (Sensory Processing Disorder). He was 2.3 years old then. The first thing they told me was that when a mother is working with the child, one can see the improvement very fast. So, from the beginning I worked as a co-therapist for him.

We first tried ABA -  Applied Behaviour Analysis - with him. I would sit in the class with him and observe what the therapist did. I would train him at home in a similar way. He was severely affected then. We started sign language with him. We started using sign language for communication at home too. He responded well to ABA very fast and picked up sign language. We were happy to see his improvements and felt motivated. In about six months, he started vocalizing. Then, the therapist told me to focus more on speech rather than using sign language. But that created a lot of stress in him because he had apraxia. He did not cooperate with the therapist and cried all the time. However, he worked well with me at home. Then we decided to do the home program rather than going to the therapy centre. I did the home program, took videos and shared with the therapist. And they suggested corrections. I did this for six months.

At the same time, I had to give my other son equal care and satisfy the responsibilities at home. I could not balance all this together. It was really a hard time. Then I realized that I could not go on like this. I needed a support system. I began seeking advice. One Dr. Brinda told me that Advaith was having a high level of anxiety. He needed a structured environment. eTheShe also told me that a mother should know what has to be done. We should not solely depend on a therapist. She also gave me the message that similar issues may come up at other points in life too. That is how we went to Bubbles: Centre for Autism. There were problems with Bubbles too. It was a long way from home. Advaith’s timings would not match with my older son’s timings. There was no one else or any support. I had to manage on my own. I had to somehow work this out. I learned to drive and started driving on my own. Some good friends also helped us. They helped us to pick up my older son from school. Thus, we brought Advaith to Bubbles.

In the same year, I joined a course in special education. It was a one year course mainly on autism. I did practicals at Bubbles from Monday to Friday. On Saturday, I attended theory classes and my husband took care of the children. Thus, me, my husband and our older son worked it out. It was at Bubbles that I understood that Advaith was communicating in sign language though no one understood it. Then I understood that if he practised sign language, only those trained in sign language would understand. In addition, children with autism are taught only easy signs because they have motor co-ordination issues. So I understood that another mode of communication is necessary. Thus, we switched to a Picture Exchange Communication System – PECS. I too started doing PECS at home, step by step. Therefore, he also picked up PECS. He got to Phase 4 of PECS and his communication skills improved. He had certain limitations. Sometimes some cards would go missing and he would become frustrated. Many pictures were needed. In addition, I understood that he should generalize pictures.

Bubbles organized a workshop. I usually do not miss any workshops and thus I attended a workshop on an app called Avaz. Avaz focused mainly on communication disorder in children. Autism is primarily a communication disorder. These children can make best use of Avaz. If I learn anything new, I would try it out with Advaith on the same day. I never keep it for the next day.I tried Avaz with Advaith on the very same day. The difference between Avaz and PECS is that Avaz uses voice along with pictures. He was very happy because now he had a voice. He has apraxia and hence joining sounds was very difficult for him. He used to try a lot, but no sound would come. I could see the happiness in his eyes when he could get a voice on Avaz. And so I determined that this is the direction to proceed.

I am writing a blog, I have a YouTube channel and a Facebook page to share the progress of Addu with other parents. My message is that even the most severe communication disorders can be solved. I shared my experience in the social media to convey the message that any change can be made with children with communication disorders at some stage. I went to Bubbles because I required a structured training method. Advaith was very hyperactive then. He could not sit down in one place and focus on something. Even when the kid is using Avaz, s/he needs to have some focus and care. I observed how children responded to the Structured Teaching Method. I saw children doing things independently in the structured environment. I introduced daily schedule, physical structure & work system to Advaith. I started with object schedule, but Advaith could not pay attention, even to pictures. Advaith finally reached the written schedule. There are 3 schedules: object schedule, picture schedule and written schedule. Structured Teaching Method helped him become independent. He would not leave until a work assigned to him was completed. His restlessness came down.

The structured method needs many activities throughout the day. We tried to do different activities with Advaith and thus found out his strengths. Many parents have asked me how we identified Advaith’s strengths. For that, we must try out various activities. It is pointless to say, “My child does not like that activity,” without trying that out. Only if we try a certain activity for one or two weeks can we understand whether the child likes swimming or music. Because they have sensory issues, they will have problems in the first few days.  

We tried Avaz. It is an app. We customized it. I can understand all of my son’s actions. What was on my mind was, if I were not around, how would he communicate? This bothered me a lot. Therefore, I wanted a communication system. I wanted to teach him to communicate. Therefore, I tried Avaz. His favorite items were introduced first. These are the steps that I followed – we started with food items, his favorite activities like swimming & horse riding, his favorite places, and expressions like happy & sad. We introduced expressions in real situations. We told him, “Now Addu is happy” & “Now Addu is sad.” Thus, he began to understand. When he had problems, he would express. All parents fear that their child may not be able to give information about their names & phone numbers if they are lost or stranded.  I always keep the iPad with him. He was taught to use Avaz on iPad & communicate. Children like Advaith are not included because they are non-verbal & do not know many words. I thought he should not be left out – hence I made him frame birthday & anniversary messages for friends & family. They would also send him messages. Thus, he became more active in our friends and family circles. After that, I tried Avaz in academics also. Avaz became his voice. We worked on adjectives, prepositions, comprehensions, numbers & money concepts. Even then, he was limited in communication. I wanted to move into a generalized form called Type & Communicate. He was given activities in typing. We progressed from words to sentences. At present, Advaith can use Avaz for all his needs. Now he initiates interactions. It has taken him a while to reach here.

At 8 years, he was finding it difficult to hold the pencil. He had started using the pencil at 4 years, and had not made much improvement until 8 years. We thought we would stop trying to make him write and focus on typing instead. However, he couldn’t identify even a single letter from the keyboard. I understood that he found it extremely difficult to scan. But I was not ready to give up. Therefore, I wrote 6 letters on an A4 paper & started teaching him to point letters on it. Slowly I increased the number of letters and when he became comfortable, we brought him to the laptop. Even then, he had problems. We would stick certain letters on to the keyboard, but this was ineffective – so we bought him an adaptive keyboard: Clevy keyboard. It is colourful with big letters & easier for Advaith to use. I did not ask him to simply copy words. Instead, I made proper worksheets with pictures. Advaith had to find out the words for the pictures and type them down. It was a meaningful activity in language & comprehension. Typing skills were also involved. In 1.5 years, Advaith learned to use all types of keyboards, including touch screen keyboard. When he started out, he could not even identify a letter. Now he can do data entry in full speed. To teach him mouse skills, we joined Prayas Daksh online program. He has completed the first year and is now in the second year. He is learning to prepare materials and is now learning to do meaningful tasks.

From early childhood, Advaith would do stimming with a long thread. I understood that it is not possible for him to stop this habit, but it can be turned into a meaningful activity. I had the understanding that it was his need. That is how jewellery making came into my mind. I thought, he could do stimming as he put the beads on the threads. We started jewellery making last September to gift bracelets to teachers on Teacher’s Day. Everyone encouraged us. On sharing pictures, others asked us to make something for them also. We started out with bracelets and then moved on to make necklaces, earrings & anklets. I created a page named ‘Addus’s little creations’ on Facebook to display the jewellery that he made. Many encouraged us and asked us to start an online store. I had begun the activity as part of skill training for Addu, and had not really thought about a store. However, with the high demand for the products made by Advaith, we opened an online store with a proper account for him. Now people from different places, including US & Canada, come asking him for products. He would go to the post office & mail items through speed post and communicate with his customers using Avaz. Thus he became more connected. Now Advaith has two types of collections of jewellery: ethnic collections and adhunik collections.

As I have said earlier, Advaith was very hyperactive. I had two options before me. One was to do a lot of physical activity, the other was to try medication. I opted for physical activity. We prepared a schedule and made it very structured. On the schedule, I put physical activities and sitting activities alternatively. After each physical activity, when he would sit down, he would focus better. Sensory issues were reduced, focus improved, concentration improved, and learning happened. We introduced cycling, roller skating, swimming, basketball dribbling and shooting, and horse riding. We did all these activities consistently. When roller skating was introduced he learnt it quickly. Around that time Karnataka Disability Department conducted a competition. We took Advaith to the competition. He participated and won the gold medal in roller-skating. Everyone was very happy. Advaith took his gold medal to school. It was then that we understood that children like Advaith are so connected. When they are appreciated, they become so confident. From then he became very confident in everything. He showed better results in academics too. I registered for Special Olympics Bharath. Advaith was called for a state level competition in 2016. He won the silver medal. They conducted a felicitation program. He participated as a special athlete with other similar children. This motivated us a lot.  Advaith learnt swimming, roller skating, cycling and horse riding. If you will ask Advaith what his favourite hobby is, he will say horse riding.

Advaith was not accepted by most of the intervention centres because he had several issues. Only Bubbles accepted him. I also understood that as parents we should work alongside. In addition, I understood that Autism is a state of being, and not a disease. In the initial days I tried to cure Advaith and make him normal. Those were the most difficult days. When I accepted him, the other family members also accepted him. We learnt to accept him as he was. We focused more on his strengths ignoring the weaknesses. Instead of looking at hyperactivity as a problem, I used it to teach him sports skills. Instead of looking at stimming as a problem, I used it to teach him jewellery making.

My message for other parents is that professionals are trained experts. When they guide us, we must try out what they advise us to do. Do not think that this will not work out. I believe that the mother is the best therapist and love is the best method. In addition, parent professional partnership is very important. As mothers, we should know what must be done, how one must progress. We know the child’s needs better than anyone else.

From my experience, I understood that parent implemented autism intervention works. Also, Advaith is only ten years old. We have identified his strengths and reached here. We still have a long way to go. But now I know what must be done.

We have finally reached this stage. Many professionals have helped us. I got many ideas when I did practicals at Bubbles. When I introduced Structured Teaching Method and physical activities, I could resolve many problems related to autism and hyperactivity.

We never force him. We respect his feelings. Just one person in the house cannot do this. Myself, my husband, and our older son plan things together. Today I am here. They have a clear plan of what is to be done at home. I am also comfortable here. I know that Advaith will be able to communicate his needs. Advaith is not dependent on me. Even when we began at a point where everyone said that nothing is possible we could make many changes. This is the positive message that I have to share with you. However severe the condition is we will be able to make changes.

Thank you.