Traversing Through Autism: A Mom’s Musings

Changemakersaathi माँ: Jaya Sudhakar

Hi I am Jaya Sudhakar, mother of Siddhanth. We live in Hyderabad where my husband is posted and Siddhanth is our only son.

Siddhanth was born in Madurai and raised in Mumbai. His early milestones were no different from that of a neurotypical. As a toddler he was cheerful and interactive, often amazing us with his cognitive abilities. He could recognize the alphabet, the written names of magazines in different regional languages and even started spelling words of his own accord around two and a half years of age. We discovered by chance that he knew the number names (spellings of numbers) imbibing them from a book, as it wasn’t taught to him at home or at school. So, everyone around started calling him a ‘gifted child’. His first year at playschool (nursery) was a cakewalk with only orals and play activities.Our concerns emerged after he was four as his speech had not progressed to sentences,though his vocabulary was good.He could communicate his needs in multiple languages using only short phrases of 2-3 words, choosing the right language to use, depending on the individual. Writing the alphabet turned out to be a big challenge for him though I could see him trying sincerely. His inability to communicate how he fell down after coming home from school and his increasing hyperactivity indicated that we had to seek help for him. On the recommendation of our paediatrician, we consulted a developmental paediatrician and at age 5, Siddhanth was formally diagnosed with Asperger’s syndrome (core condition) and ADHD (secondary condition).

Back then in 2000, as with most parents, the term ‘Autism Spectrum Disorder (ASD)’ was new. To both my husband and me, the initial shock on realizing that this would be a life long condition quickly gave way to acceptance and determination to know more about autism and do our best for our child. This could be attributed to the capabilities shown by Siddhanth and also to the fact that we had met one of the finest human beings in the developmental paediatrician, Dr Vibha Krishnamurthy. She gave us a lot of hope pointing to Siddhanth’s strengths and how it could be used to overcome his challenges. Her referrals to Forum For Autism(FFA), a parent support group in Mumbai and to good speech and occupational therapists put us on the right path towards acceptance and empowerment.Through FFA right at the outset, I was fortunate to attend a workshop by Ms Merry Barua of Action for Autism which was an eye opener and gave many valuable insights about autism. The huge collection of books and print material at FFA’s library were also a boon.

Our first emphasis was on ADL. My husband and I realized that we would have to make certain life changing decisions.
Based on the developmental paediatrician’s advice and an assessment done, we started searching for an inclusive school in a mainstream setting with an in-house resource centre.. In those times, when the internet was just making an appearance and the awareness about autism in society was generally very less, I made an informed choice to take voluntary retirement from a promising career in a PSU to focus more on the early intervention and schooling for Siddhanth.

We could find only one such school which was willing to ‘try out for a year’. It was at a distance of around 35 kilometres. So we enrolled Siddhanth there in the first grade.
With my husband’s full support at home, I used to take Siddhanth to school, wait there for 5 hours and bring him back home. The commute included an auto ride, two local train rides and once again an auto ride in each direction. This continued for a year and a half until we could relocate closer to the school. This year was a huge learning experience. It was gratifying that at the end of the first year, the school not only promoted Siddhanth but also admitted about 5 to 6 kids on the spectrum in their KG section.

Our journey has been a roller coaster ride. The challenges kept coming, yet it was always the unconditional love and support from our extended relatives, family friends from FFA, neighbours, Siddhanth’s school Principal, teachers and peers and therapists that kept us moving forward.We tried to use every opportunity to enhance Siddhanth’s social skills by taking him to many functions and outings. It was pointed out by an occupational therapist that Siddhanth’s handwriting issues were due to his weak shoulder muscles and exercises helped us to work on that. The teenage years were challenging not only because of hormone issues but also because of the fact that my husband started getting transfers out of Mumbai. Until then, though he was posted in remote locations, they were in and around Mumbai and daily commute from home was possible. He used to take an active part in teaching Siddhanth his self-help skills, shopping skills and his outdoor play in the park with his friends. Now the PSU where my husband worked was merged with another PSU and transfers to 2 and 3-tier cities were inevitable.So, in his entire teen years which are supposed to be the toughest for an individual with autism, Siddhanth’s father was posted in smaller towns where Siddhanth couldn’t pursue his education, though we tried our best to look for a suitable school for him. We however took it in our stride and carried on, Siddhanth and me staying back in Mumbai to continue his studies and meeting his dad as often as possible – school breaks were always spent with him in his place of posting and he would join us on his official trips to Mumbai. He always kept connected with us in our day to day life through calls. During these twelve long years, my elder sister’s family in Mumbai was a huge support to Siddhanth and me.

It was around this period that Siddhanth started learning to play music on the keyboard and emerging sports facilities for children with special needs ensured regular physical activities and swimming classes. However, I was not successful in training him in independent travelling in public transport in the huge city of Mumbai. Siddhanth would travel by school bus or a van for sports with his friends. Picnics with his group of friends in school and sports centres and outings with his sports teachers who were closer to his age helped him in socializing with peers.

They say that once a child is diagnosed with ASD, the whole family evolves with the child. Nothing can be farther from the truth. My own personal journey evolved and pushed me beyond boundaries in a way that I had never imagined. Autism became an integral part of our family life right from Siddhanth’s diagnosis and one always found oneself getting associated with some or the other community activity to do with autism. Two decades down the line, at the basic day to day level there is always an intrinsic connect with fellow parents both older ones and younger ones. The mutual sharing and caring forms a huge part of our life.

During Siddhanth’s teens, some of us parents from FFA collaborated with the inclusive schools of Mumbai which had students with ASD and with Nair Hospital(one of the prime Municipal Hospitals of Mumbai) to approach the State Education Board of Maharashtra to sensitize about autism and obtain provisions for students with ASD in the Board Exams.The provisions were many for the uneven skills of autism-such as use of computer/scribe to give exams, extra time, choice of vocational subjects, project/viva voce in lieu of practicals, same school as exam centre and so on. As no two children with ASD are similar, a system was formed in the State to assess the students for autism and recommend specific provisions for each child. This took more than 3 years – it is one of the most fulfilling experiences of my life as it led to the State Education Board inviting FFA members to their meetings year after year to represent the cause of autism . Gradually, the provisions for autism were extended to lower grades and to higher studies in the Universities. The grant of provisions was significant because they came rolling in from 2011 onwards, much before the RPWD ACT of 2016.

Siddhanth went on to be the first to get an opinion certificate for Autism in Maharashtra and was in the first batch of neurodivergent students to successfully clear the Xth grade Board Exams scoring 79%. He has given almost all his exams on computer. His computer skills, ability to interpret musical notations or quickly grasp the nuances of software to type in Devanagari script/ Maths symbols / French accents and his calendar calculations made a professional suggest that he could be good in coding So he went on to do his XII grade from NIOS and BCA from YCMOU. He used to simultaneously volunteer for NGOs with typing assignments and PPTs. The upsurge in online classes during the lockdowns have helped him to enhance his skills in employment readiness, Creative Coding and Graphic Designing to name a few, intern for a few organisations and blossom as a freelance graphic designer.

After Siddhanth completed his graduation, we were able to join my husband in Hyderabad in his present place of posting. Thankfully it happened before the outbreak of Covid 19. At Hyderabad, the support group of Nayi Disha has added value to our lives.

Very early on in our journey I read somewhere that God chooses us to be the parents of a special child to bring out the best in him / her. As parents we have discovered that it is through our child with autism that we evolve as better human beings. We learn to be patient and non-judgemental. We are able to take life as it comes with minimal expectations and immense gratitude for our blessings. I became naturally inclined to share inputs with various other Boards- NIOS, AICTE and also to NEP to sensitize about the needs of students on the spectrum.

It has been an enriching and fulfilling journey for us – each small step of progress motivating us, each setback helping us to introspect. There have been lighter moments and poignant ones too – like when in the most unlikeliest of places during an official inspection my husband met a dealer in remote Maharashtra who had a son with autism or when a mother who had just lost her 17- year old with muscular dystrophy and autism as a secondary condition, mentioned that her son loved going to school and he could continue his last two years in school because of the provisions for autism. I think parent support groups are the biggest strength and unifying factors for the fraternity.We have found innumerable lifelong friends and it has been a humbling experience to meet many inspiring persons along the way. Most importantly life has taught us to be grounded, be in the present and appreciate the small joys of life.The dynamics of every family is different and it helps when we take life one step at a time.

Author Jaya Sudhakar

Jaya Sudhakar has done her Masters in Physics and was employed as an Asst.Manager in a PSU. Her son’s diagnosis urged her to seek voluntary retirement from service . She is actively involved with Forum for Autism, Nayi Disha and The Spectrum Autism. Friends, tending to plants, reading, writing, music, movies, travelling and a little bit of spirituality are her perennial energy boosters.

Creative representation for this ChangemakerSaathi story is done by our extremely talented CreativeSaathi associate Morpheus Nag.

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