Her Arrival

 

When Meghana arrived on a lovely summer day in June 1995, my excitement knew no bounds. I set my eyes on my beautiful baby girl and completely forgot all about the extremely difficult delivery I had had. I felt my prayers answered and my dream come true.

 

The Descent

 

Meghana met all her milestones typical for her age and had all her vaccinations as per the schedule. Slowly, over time, I realized that Meghana was different and something was not quite right. By the time she was three years of age, she would not respond to her name or answer questions posed to her.

We admitted to a very reputed school in Chennai, India where we live. Each day brought new struggles after she started going to school. She never communicated with her teachers and peers unless she was asked the same question several times. Frustrated at her own inability to communicate, she would get into a temper tantrum.

At home, Meghana would lash out or cry and hit out at me or her grand mom. We were her targets when she was unable to get her point across. Her tolerance levels and focus were extremely low. The school was not helpful and compassionate although it was a convent. Her pediatrician advised us to see a therapist. After many visits to various therapists at whose mercy we were, we were told that Meghana is autistic. She was 4 years old when diagnosed. Back in 1999, neither my husband nor I ever knew anything about autism or had heard that such a disorder even existed!

 

The Rock Bottom

 

 

We changed her school on the advice of her therapist and started her on speech and occupation therapy. After a few therapy sessions, she was able to answer a question with a “Yes” and a “No”. However, she was still was not able to tell us when she was hungry but would instead speak about irrelevant things. I had to figure out that this was her way of letting me know that she was hungry or was tired. Since she liked to play with children who were older than her, they were teaching her bad words and she used this at home when she was hungry or could not communicate her feelings. She never liked the school and was scared of the toilets which she’d refer to as “the walls are black” to mean they were dirty.

As working parents, it was difficult to cope as she would give us sleepless nights with her outbursts of tantrums, screams and laughter. She would not respond to her name but would look up and look out if she was in a room when her name was called. Her eye contact was perfect both at school and at home. At the end of the academic year with her second school, my husband and I decided to change schools as the situation was not improving, she was picking up bad language and did not like going to school.

 

The Ascent

 

Meghana was now into her third school – this was a special school and had children with learning disabilities, slow learners and Asperger’s Syndrome and autistic children. The school also provided occupation therapy classes and her speech started to improve to a great extent. She no doubt had her bad days at this school as well. However, she was in the hands of staff that were trained and dedicated to taking care of special needs children in a compassionate but firm manner. The faculty at the school informed us that Meghana had a very high vocabulary and could spell any word given to her. She stood first in spelling (dictation) tests and even did better than a grade 10 student in her spellings!

A further assessment was done by the school and their therapists. We were then informed that Meghana was high functioning on the spectrum of autism. In time, she was able to come home after school and relate events of the day. One day, she told me that her assistant, who I was paying for, was not looking after her and was hitting her. I spoke with the principal who told me Meghana no longer needed assistance.

 

Two Steps Forward, One Step Back

 

Whenever she was improving and everything was great, there used to be a sudden setback. She had lost her eye contact at the age of ten but knew what was happening and always looked down at herself when she spoke. Despite all this – due to her excellent vocabulary and willingness to learn, she was preparing for her high school public exam under the NOIS (National Open Institute Scheme).

However, as her comprehension was still poor, she required a scribe to assist her with her exam. My younger daughter Eisha’s  school assisted in getting Meghana a scribe. She completed her 10^th class exams and stood first in her school with 92.5% in English. She also went on to complete a vocational course in Baking and Confectionery and completed her exams with assistance from a scribe. Meghana did not go on to complete her graduation, but we celebrated these sweet victories thoroughly.

 

The Present

 

 

Motherhood, as I have experienced it, isn’t what I had pictured it to be. I have let go of the past and have come to a place of acceptance for where my life is now. I had made the decision to quit my high profile job at the British Consulate, so I could devote my time and energy to raising my girls.

Meghana is now 22  years and is completely verbal. She communicates with a few of her friends from school on Whatsapp and email. She gets high scores on Angry Birds (even outdoes her sister) and on Colour Switch. Although she does not attend formal school or college, Meghana is occupied through the day with her bead-making and baking. She reads a lot of books on baking and is always on YouTube watching baking videos. She loves shopping and selects her own clothes.

Unlike autistic children, Meghana does not react to change in environment and on the flip side she welcomes and looks forward to it. She stays alone at home when I am away and is independent in taking care of all her personal needs as an adult. Her eye contact is now back and her tolerance levels have improved to a great extent, as my husband and I continue to work on encouraging her and building up her self-esteem and self-confidence, so when the day arrives, she can be independent.

She has not learnt math; however, if given a person’s age, she can tell how old they will be 15 or 20 or 25 years hence. She can also tell the day of the week, if given a date 20 years  in the future or in the past. Meghana remembers names and can put a name to a person. She still remembers Malathy, my friend from college, who visited us when she was 6 years old. We have long conversations on baking, people and events.

 

 

The Gifts of Autism

• Meghana gave me the gift of experiencing true FREEDOM by LETTING GO of expectations and accepting what is real.
• The gift of being her mom is part of MY STORY. As much as I would never have wished for my daughter to have Autism, raising her is a significant piece of my life story, which has strongly impacted who I am today.
• I received the gift of CELEBRATING the littlest things – the first time Meghana answered me “YES” when I asked her if she wanted to have ice-cream.
• I saw the gift of SIMPLICITY in a child with so much complexity. Meghana does not know jealousy, vanity or envy. She lives her life simply, driven by her emotion and instinct
• The gift of her SPIRIT. Witnessing Meghana when she is full of JOY and excitement about little things.
• The most important – the gift of the Autism/Special needs COMMUNITY. I have learnt so much from different autism community groups on the internet and through personal interaction.
• Lastly, the gift of CHOICE. I have the choice of either loving and living my life or allowing grief, stress and anxiety to dominate my every moment. I choose to embrace my life and experience the joy of my daughter and live life to infinite possibilities.

 

In Conclusion…

 

From the lessons I learned in raising a child with Autism, I truly believe I am now happier, more understanding and prepared to assist parents who are new to this disorder and point them in the right direction. Autism has altered my path in ways much deeper than I may have ever found on my own.

Author Bio: Artistic, articulate, and a die-hard champion for the cause of Autistic children, Lesley divides her time between her family and designing her own line of sterling silver and semi precious hand crafted jewelry. View her stunning collection at Mels Jewelry on FaceBook and Instagram.

Do read Janaki Rao’s poem ‘Amma, Are You Angry With Me?’ on our blog.

 

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