Shilpa Shroff is a trained Ayurvedic doctor, public health professional and the mother of an eight-year-old son with hypotonia and sensory processing disorder. She spoke to Sexuality and Disability about raising her son, and navigating disabling structures.
How old is your son? What does he do?
My son is eight years old and he is in the third grade.
After he was born, he was diagnosed with hypotonia, a condition in which the body has low muscle tone. This means that all of the baby’s milestones are delayed, so the child sits up late, walks late, etc. To add to this, he had some issues with his balance, so he would fall and was afraid to come down from heights.
For the first five years of his life, he had rigorous physiotherapy, which helped him overcome a lot of his physical limitations. But he was always behind his peers, and will always remain so.
As a doctor, you do understand the reasons for the medical condition but you (can) never understand the prognosis of it, like how long your child will need to recover, if he will recover at all, or what sort of support he will need.
He also has sensory processing disorder, a condition in which the brain has trouble receiving and responding to information that comes in through the senses. Some people with this condition are hypersensitive to certain stimuli in the environment.
How do you think our environment becomes disabling, and obstructs access to education and social circles for children with disabilities?
My child’s disability is not visible and that’s tricky. So when you go to schools and tell them that he has an issue, they find it difficult to accept. They feel he is just like any other child, and are reluctant to support him, until and unless his case is supported by medical certificates. They are not bad people, but they just do not understand that support is needed for him to take that second step. Very few schools in Bombay do that. I was fortunate that my son’s school showed him that support.
Due to his sensory processing issue, he is very slow in copying things from blackboard in his class and used to get scolded by his teacher. He needed extra time for which finally I had to get a certificate to give to the school. But the good part is that the school cooperated and agreed to give him that extra time. And today at the end of one academic year I see that has helped him to improve in his schoolwork.
When your disability is categorised as less than five percent or less, even though it is not easy to prove your limitations, you still do need a lot of assistance in a lot of spheres to navigate that disability.
My son was in playgroup when he asked me, ‘Why do I have to go to physiotherapy when all the children go home from school?’ I had to explain to him that he needs special assistance, which he took very positively. Disability has probably made him into a more positive and confident person because he knows he has to struggle and overcome. But at the same time you need a conducive environment, support from your friends, teachers, bus attendants, etc. To make everyone aware is quite a tedious task, because there is still a lack of acceptance.
The process through which parents have to go through to make the people understand is at times heartbreaking because not everyone is helpful. Teachers also need to understand that (students with) different disabilities have different needs. Moreover, sometimes my son’s responses are slow, he gets distracted when he stays behind the class. He is at times labelled as anti-social. But it is just that he doesn’t understand how to cooperate.
Also, there is a lot of bullying and teasing amongst peers. I have to deal with this on different levels, as my child suppresses a lot of emotions. At home, he has a conducive environment, but when he goes out into the world, he finds it difficult to adjust socially.
Do you sit with him and talk to him about the issues he faces with his peers?
I talk to him regularly and at length whenever it is needed. Whenever he has an issue with people in school or during his bus ride, I need to talk with him on that day itself. Right now, he is at the age where he understands things like an adult but is not able to frame his thoughts like one, so there should be a place he can be himself, where he can feel what he feels.
It’s important to not judge children even though they may be wrong. For example, he is very sensitive towards animals so if anybody says anything against animals, he becomes very angry, which is when I have to tell him to ignore people who are not willing to listen, and also make him understand the perspective of his friend. I have to explain that he will eventually find people who will listen to him. It’s difficult because a nine-year-old doesn’t understand all this.
And how do you counter the stigma and prejudices around your child’s disability?
I read a lot. Parents need to have knowledge about the disability so that they can counter any prejudiced comment. Many people understand, but since they have never encountered anybody like my child, for them it is black and white. If I tell them, they are willing to understand. His school has counsellors for children so they talk to them.
How has your journey been as a parent? What was your initial reaction when you came to know about his disability?
He was eight months old when I started realising that his milestones are delayed and (knowing that) I was depressed. For the first two months, when I knew there was an issue but it could not be diagnosed until the child started to respond and this wait nearly kills you. The first few years were very frustrating and depressing until he started taking his first steps with assistance when he was about 19-20 months old which is pretty late. He had special shoes and foot support using which he started walking.
But people, even strangers, have an exceptional ability to ask what’s ‘wrong’ with the child, so everyone would ask why the kid is wearing those (shoes) because he looks healthy. Since he was a chubby kid, my family members also felt that’s the reason he cannot walk, because (they thought) his body could not manage his heavy weight. I had to explain that it was other way round, he isn’t able to use his physical strength to be able to walk. After physiotherapy, I started seeing the changes in him. Though they were very slow, I was hopeful.
It has not been easy because you tend to slip into the bitter path (and ask questions) like why me? Why is this happening to my child? The thoughts are all negative and it’s a chain but there is a better path. Probably because I was a doctor, I started reading about his disability issues quite early. But there isn’t a lot of awareness on sensory processing issues and hypotonia in India and all the literature comes from the West, where people have a different approach to dealing with these kids, which even the physiotherapists in India lack.
It was a difficult decision for me to make on how long to give the physiotherapy and when to let it go. But then I had to take the decision to enrol him in activities that other kids do. What happens to special kids is that they spend a lot of time in treatment therapy and lose out on other important parts of growing up such as playing with their peers and learning from socialising. This just doesn’t happen in physiotherapy. Fortunately, my son had another child growing with him in our locality. They became good friends and used to play together, and he learned a lot from that.
What kind of support have you received from your family and friends?
I have received very good support from my family. Initially, I didn’t get it as they used to consider me a ‘hyper-mom’ (who was) investigating too much into a ‘normal’ child. You are undermined, but you need to convince them that our child needs assistance and therapy. And it is not unreasonable to go for therapy!
Now, my child is receiving occupational therapy for handwriting and other issues, so people ridicule me saying, ‘Can’t you buy handwriting books and sit and ask him to write?’ But I say no, because these children need special commands that require special teaching techniques and patience, which parents may not always have. When somebody else is helping you with handwriting, there is no harm. So, when my friends ask me, I say it is fine motor coordination that he is developing.
As a parent, how do you ensure that your child has the support he needs?
Long ago I accepted that his needs are special. After acceptance, then I had to work on it as a parent on how to be a guide and a support to him for a lifetime. My husband is very supportive and caring. But when our child was small, it was difficult for my husband to provide physical care as he was not comfortable, rather, scared to care for our baby, who used to lose balance frequently. But now I travel a lot for work and my husband is the one who looks after the child and his needs.
What would you wish to convey to the parents of children with disabilities? Also, what concrete structural changes would you want to see to support children with disabilities?
Very few help and support groups are available for mothers in India and very few parents are aware of these issues. A support group doesn’t require money and can be useful for parents across socio-economic backgrounds. For instance, at the occupational therapy centre where my child goes, I talk one-on-one with mothers who are anxious about their kids, and it helps.
To other parents, I would say don’t lose hope. Don’t compare your child with other children. Appreciate their smallest achievements, like their first drawing. My child drew something which to me didn’t look like a butterfly but in his mind, it was a butterfly. Encourage that, and try to see how it can be made better. But don’t go on correcting – why would you want to make the child look through your eyes? Everyone has different abilities. The most important thing is to love your children the way they are!
Photo courtesy: Shilpa Shroff