For parents raising children with learning disabilities or special educational needs, knowing where to begin can be difficult. There are questions about their child’s development, the support they need and what the future may look like. Sometimes, parents are also trying to understand a diagnosis while dealing with their own fear and uncertainty.
Kasthuri Rayan, a SEN educator and author, has spent years of working closely with these children and their families. Through consultations, advocacy and community work, she has seen not only what children need, but also the struggles parents face while trying to understand and support them.
These experiences eventually inspired her to write Beyond Label, a book that gives parents practical guidance while reminding them that they are not alone. More importantly, the book carries a message Kasthuri strongly belives in, “A Diagnosis can help us understand a child’s needs, but it should never become their entire identity”.
Speaking to us, Kasthuri Rayan shared how her journey started, what she has learned from families and why she hopes Beyond Label can change the way we understand children with special needs.
The Journey That Chose Her
Kasthuri never planned to become an SEN educator. Instead, she says the field found her through the connection she naturally developed with children. Over the years, she started paying attention to the different ways children communicate. It was not always through words. Sometimes it was through their eyes, gestures, movements, behaviour or even silence.
Her work also showed her that supporting a child often means supporting the entire family. She met parents who were worried, confused, and exhausted while searching for answers. These experiences made Kasthuri more patient and observant, while teaching her to look beyond a child’s behaviour to understand what they may be trying to communicate.
Q: You have spent years working closely with children with learning disabilities and special educational needs, as well as their families. What first led you into this field, and how has that journey shaped you personally and professionally?
A: “I don’t think I ever consciously chose this field. In many ways, I feel this field chose me.
Being an SEN Educator is not simply about teaching a child skills. It is about understanding the child behind the behavior, empowering the family behind the child, and creating opportunities where that child can feel seen and valued.”
When Parents Don’t Know Where to Begin
While working with families, Kasthuri noticed one of the biggest struggles parents face is simply not knowing what to do first.
When parents realise their child may need additional support, there can be many emotions involved, from fear and confusion to guilt and worry about the future. Some begin comparing their child’s development with other children, while others receive different opinions and advice that can make the situation even more confusing.
Kasthuri believes parents should be given the space to ask questions without feeling judged. They do not need to understand everything immediately or become experts overnight. What matters is their willingness to learn about their child and find the support they need.
Q: Through your work with parents and families, what are some of the struggles or concerns you often see them facing, especially when they are first trying to understand their child’s needs?
A: “You child does not need to become an expert immediately. Your child needs you to be willing to understand them.
My role is not to give parent false hope, nor is it to tell them that everything will be easy. My role is to help them see possibilities and recognise the strengths, abilities, and potential that already exist within their child. For families who may feel lost during this stage, Kasthuri wants them to remember one thing: “You are not alone. Let’s understand your child together”.
Why She Wrote Beyond Label
Years of working with children also made Kasthuri notice how easily a diagnosis could become the first thing people saw. Terms such as autism, ADHD, dyslexia and learning difficulties are important because they can help families understand a child’s needs and get the right support. However, Kasthuri began questioning what happens when the label becomes more noticeable than the child themselves.
Behind every diagnosis, she says, is still a child with their own personality, interest, fears, strengths and dreams. There is also a family learning how to navigate a journey they may never have expected.
Q: What inspired you to write Beyond Label? Was there a particular experience or moment in your work that made you realise there was a need for a book like this?
A: “I started asking myself: What happens when the label becomes bigger than the child?
It is about rejecting labels. It is about reminding us not to stop at the label. Through the book, Kasthuri hopes parents feel understood while educators are encouraged to look at children’s behavior differently.
As she puts it, “Before a child is a diagnosis, they are a child first.”
Giving Parents Guidance without Adding Pressure
For Kasthuri, Beyond Label is not meant to be another book that tells parents everything they are doing or gives them another long list of things they need to do. Instead, she wants parents to finish the book feeling lighter.
The book offers practical guidance on observing a child’s needs, responding to challenges, communicating with educators and making informed decisions about support. At the same time, Kasthuri wants parents to know that difficult days are normal. They do not need to have every answer, and their child’s journey does not need to look like another child’s.
Q: For a parent picking up Beyond Label, what do you hope they will learn or take away from the book? How does it offer practical guidance while also giving parents the reassurance that they are not alone?
A: “I don’t want the book to become another sources of pressure. I want it to remind them that they are already doing something incredible important: they are trying to understand their child.
Don’t spend so much time worrying about the label that you forget to discover the child behind it.
More than the message, the book also gives back to the community. Beyond Label is not focused on commercial profit, with proceed being channeled back to support the special needs community, includes help with household expenses and single mother.”
There is also part of the journey that is very close to Kasthuri’s heart. Whatever she earn from her work as an SEN Educator, together with the sales of her book, she channels back into the community. Right now, she is supporting 17 special needs children and single mothers across Malaysia by helping them with their household groceries.
“It may seem seem like something small, but to me, it is a meaningful way of making sure that the work I do and the things I create can reach beyond my own life and bring some form of support to families who need it”
This is a Varnam Exclusive Feature! Any Reproduction Requires A Credit To Varnam Malaysia.
