Seema & Nehal

There were ups and downs. It began with a terrible experience. We had enrolled Nehal is a renowned play group and we had shared with them that she doesn’t talk and might run around. One day I noticed something sticky on her legs and arms was shocked to hear from another child that the teachers used to bind Nehal with sticky tape while she was at school. We pulled her out of that playgroup immediately! We found a smaller, simpler playgroup and that really worked well for her.

Primary school was challenging as the staff there was unable to provide the necessary support & accommodations. We were told that our child is spoilt & undisciplined and were asked to stay with her in school. My husband and I again split this responsibility and we used to alternately take ½ day leave from office to be in school.

Nehal then moved to GD Somani school and her upward school journey started there. The staff was supportive and encouraged Nehal to take part in all activities. Shadow teachers also helped a lot. When exams started in Grade 4, she got extra time and a separate place to sit. She was allowed to drop Hindi in 10th grade. As academics got tough, we started helping her with her studies. Sometimes I joke that I have passed 10th and 12th exams along with Nehal. After 10th she went to Gopi Birla School, which is a CBSE school. She got good support from teachers there and scored 76% in her 12th boards.

While considering options for higher education, we were pleasantly surprised to learn that St Xavier’s College in Mumbai had lower cut-offs for students with disabilities, and she secured admission in BSc- IT there.

The only downside in Nehal’s school experience was that she didn’t have any friends. This changed when Nehal went to college. Since it was a mixed group of students who were all new to each other, Nehal was able to be part of a group of friends. She enjoyed her college life and also learnt to travel independently. The college was very inclusive and accommodative, for example, Nehal was allowed to answer in points rather than descriptive answers.

Through FFA, we came to know that Ernst & Young (EY) was looking to hire neurodivergent employees. We helped Nehal prepare for the interview and after several rounds of selection, she got selected to work for EY. Apart from that Nehal also has a special talent in stone painting, which she loves doing and has a small business. She has delivered more than 1000 orders of stone painting and displayed them at exhibitions as well.

When we look back at our journey, we realize what a long way Nehal has travelled to be where she is now, and we really feel blessed about it.

Oh yes! I had complete support from my husband. Anupam & I worked together on all the home programs, we took turns in being shadow teachers for Nehal. We never thought it was one person’s responsibility alone. In fact, our whole family has worked shoulder to shoulder in everything we did to support Nehal. We had our second daughter when Nehal was 6 years old. And Nehal immediately assumed the role of a protective older sister. We saw real love and attachment expressed so openly by her for the first time. And with that, she learnt to express love with others too. Nehal learnt a lot of social skills in interacting with her sibling, Vaidicka, who not only loves her but also respects her.

Yes, I continued working. It helped that I had a government job, so my hours were fixed. I am strongly in favour of both parents being equally involved in supporting the child. When mothers give up their careers to take care of their kids, it often happens that the father then doesn’t get involved, leaving it entirely on the mother to manage. Also, it can get monotonous for both mother and child to only interact with each other and sometimes the learning curve dips. Thirdly, one does need the additional income as therapies etc. are very expensive.

However, I don’t want to judge any mother who chooses to be with their child full time. Everyone takes a decision that is in their child’s and their best interest. But the only thing I will say is, don’t take on everything yourself, you must involve your husband in supporting your child.

I am from Bhopal, and I once organized a meeting there, of parents of children with autism. I sensed that they felt helpless and didn’t see much hope. There was a lack of information & resources and a lot of the mothers expressed that their in-laws don’t understand autism and blamed them for their child’s behaviour. I then realized that most of the information on autism is in English. What was needed was information in Hindi and in simple language that can be read by the whole family. That’s when I decided to write a book on my own journey along with all the lessons I learnt.

My book is titled ‘Sangharsh….Sang Harsh” – ‘sangharsh’ (struggle) toh hai, par ‘sang harsh’ bhi hai (with a lot of joy). It will be available on Amazon by end of the year and all proceeds from the sale will go to Sangati Foundation, who is also publishing the book.

Stay positive and don’t lose hope - Our energy is sensed by our kids. Never talk negatively in front of your child. And never, ever hit the child.

It takes hard work - Parents must get involved as everything cannot be left to the therapist. Professionals can only guide you, ultimately you have to put it to practice yourself.

Set up small goals and keep working towards it. Progress could be slow but don’t give up. Not all the days are same.

Take the whole family with you - Everyone in the near and extended family must be involved in helping the child. Get them to participate in helping
your child achieve a goal.

Maintain records - It helps to maintain detailed records of abilities and progress. This will help you in adding progressive goals.

Don’t try anything other than therapy - You will see many ‘treatments’ ranging from stem cell to homeopathy to diets. Take it from someone who has tried many of them – None of them work. The only thing that works is therapy and a positive mindset!

Seema can be reached at 9869004567 and Nehal’s work can be viewed at https://stonepainting-nehal.com and on Instagram https://instagram.com/stonepainting.mumbai