“The thing about autism I found most challenging, is the great unknown.” Preeti Savur’s story continues with the second post giving you a glimpse of the lives of people working patiently behind the scenes. Ayush Bhambhani’s continuing journey was and has been full of obstacles, but he was never alone in it. Preeti Savur also explains how routines can improve the level of communication between children and their parents.
In case you missed the first part of this story, click here.
Her first quote about the ‘great unknown’ can be explained through the questions that filled her mind the beginning, “Will he ever talk? Will he ever be able to go to a traditional school? Will he ever be able to make friends? Will he be able to go to a college? Will he ever be able to live on his own?”
She explains, “When you are faced with big questions and uncertainty every day, you really learn to appreciate the little moments and the small victories. The truth is, you may not ever have the big victories you once dreamed of. There’s no crystal ball …”
“So yes, we clap and cheer for just about everything from first request by sign language, to first day at preschool without mom and dad by his side, to first words at age 3, to the first day of kindergarten in a traditional classroom in a public school, to the first time using the restroom independently, the first movie show, the first restaurant meal, to swimming effortlessly with an ear-to-ear grin even though it was just a dog paddle.”
“That’s okay. Small victories can be big victories. And so far, all of those big questions have had a common answer: Yes!” says Preeti.
The support for Preeti and Ayush came from the people around them: people who helped them achieve these small victories. One of them was her daughter Aahana. Preeti says, “If you want to know how to treat a child with autism…look to their sibling, they will show you.”
“Some of the most caring, some of the most compassionate, some of the most thoughtful people walking the face of this planet are brothers and sisters of people with special needs. My daughter, Aahana is one such sibling.” She says the reason they are such marvelous people is that they had to struggle with some really tough issues. Issues that help them grow in life.
Siblings help you grow, develop as a person, but more than that, they push you into becoming a better version of yourself. “She is her brother’s superhero and the epitome of tolerance and compassion for us. She has been a rock throughout, always smiling, always laughing. We have witnessed her grow first-hand through the difficulties we faced every day and are very glad that she accepted Ayush for who he is. We are often left speechless seeing how far she goes to challenge and push Ayush to do things he wouldn’t otherwise.”
All of us have to deal with different problems in life. The degrees of those problems depend on how we perceive them. Aahana doesn’t only deal with just her own life, “It takes a strong person to do what she does. I know that she wakes up every morning unsure of how the day is going to go. Will today be a good behavior day? Or will it be filled with tantrums, breakdowns, impulsive actions and tears? Lots and lots of tears.”
Most siblings tend to be over-protective, in Aahana’s case, it’s justified, “I know that she spends most of her days with that fire in her belly, ready to pounce on anyone that looks at her sibling funny. If anyone tries to make her sibling feel different or discourage them from being his true self, she is out for blood, and Lord help anyone who makes fun of her brother. I know she has fought many battles on his behalf and I know she will spend the rest of her life fighting for him.” Let’s accept this truth, most Indians don’t know how to conduct themselves around a differently abled person. So, don’t get offended if you start acting funny around one and their sibling punches you in the face.
Preeti adds, “As a younger sister of an amazing nineteen-year-old boy with autism, I know the challenges faced on a daily basis. And quite frankly, she doesn’t always get the Ayush on the back she deserves. As an autism sibling, she took on the role of a caretaker and protector of her sibling.”
“She has been hard on herself. She knows that he can’t help being the way he is but she also knows that she is human and she has her limits. I know that sometimes she feels embarrassed when she is out in public and people stare, and I know the guilt that follows, that feeling is almost unbearable.”
All of this isn’t written for you to take pity on them. It’s meant to help you understand the lives of people who supported and groomed a budding artist.
“I also know that she loves her brother more than anything in the world. I know that he has taught her a lot, and she has taught him even more. She would do anything for him. She is doing the best she can, sometimes even more than that and we see it. Nothing she does ever goes unnoticed.”
Her son and daughter had different needs and as a mother, she had to ensure all of them were met. “I ensured that I was always there for them irrespective of the circumstances, disregarding my health, disregarding time and space….my kids needed something it would be done and still is. I ensure that neither ever feels neglected.”
They did everything as a family, “We ensured that our daughter got quality time with me and was able to do her thing – sleep overs, movies with friends, mall hopping. I am their emotional, physical and psychological anchor. To ensure that I was hands on, I worked/ work in the night shift, sustain on 4-5 hours of sleep. If I could not do something for some reason, I would fall back for help on my parents and husband, but ensured that things were done for them. However they were never spoilt.”
All that affection and hard work finally paid off, her son is an accomplished zentangle artist, an avid gamer and a computer whiz. Her daughter has excelled in academics, dance and theatre. And they are just starting out.
Communication plays a crucial role in every relationship. So how does one maintain a relationship where the person close to them has trouble expressing himself like you and me? “Communicating with an autistic child can pose many challenges. Children with autism often withdraw within themselves and have trouble interacting with the world around them.”
According to her, every case of autism is a little different. Some children can communicate verbally, while others struggle with all kinds of communication including non-verbal hand gestures or facial expressions. How was it for Ayush?
“Once we began to understand the signs and conditions of Ayush’s autism, we started working a plan for communicating with him. Communicating with an autistic child has very few ‘one size fits all’ solutions and, in many cases and Ayush’s too, it took a lot of trial and error and patience in order to find successful strategies for communicating. However, the trials and patience that went into finding a way to communicate only made a communication breakthrough more rewarding.”
Preeti talks about the power of daily routines and how they help children in developing language and social skills, “An enormous amount of learning can take place when children are involved in daily routines such as bathing, feeding, changing and riding in a car – things that parents do with their children every day. These daily events are so important because they provide opportunities for repetitive learning in a natural, enjoyable yet structured way.”
How do routines help children?
“Think of all the things parents do with their children on any given day. They dress and feed them, bathe them and help them brush their teeth. It is within the context of such daily routines that a young child begins to make sense of his or her world.”
“Since there are goals in all routines, it is clear to the child what has to be done. For example, the goal of getting dressed is for the child to end up wearing his shirt, pants, socks and shoes. The goal of riding in a car is to be seated and buckled up for the ride. Each routine consists of a series of small steps, such as opening the car door, climbing into or being put into the seat, sitting on the seat and then being buckled. Some routines have special language that goes along with them – Time to get dressed or Let’s go for a ride.”
“The easy way isn’t always the better way. It is often easier and faster for the parent to lead the child through routines. If, however, the parent always directs – giving the child juice before he asks for it, turning on the water or putting on the child’s pants when he can start to learn to do it himself, the child doesn’t feel that he has much impact on his world. On the other hand, if the parent waits for the child to initiate, such as letting the child try to turn on the water or squeeze toothpaste onto the toothbrush, the child begins to understand what his role as an initiator can be.” She says this is a powerful experience in helping a child understand that he can take another person’s role or perspective, an important part of every effective social interaction.
She adds, “If the child sees that there is a reward for following the steps of the routine, he’ll be more likely to comply.
Be creative – routines can be made out of anything that a parent and the child do together regularly. Routines can be created around planting or watering plants, changing a bandage, feeding the cat or baking cookies. The best learning opportunities are the ones that are the most interactive and the most fun.”
Finally, she concludes that we need to be consistent in our communication with an autistic child, “they understand things as black n white, good or bad… there is nothing grey or abstract in their lives. Everything has to be concrete.”
For someone who may not understand the abstract aspects of life, he surely knows how to express his emotions through colour, and one organisation helped him nurture that talent.
In 2014, Preeti enrolled her son in Sense Kaleidoscope. She talks about how Ayush wouldn’t have come this far, if it weren’t for Akshayee and her team, and to them she says, “Know that you have given me a break when I needed it the most. Know that you have given peace of mind about one aspect of our day to a parent who has to worry about so many other things. Know that your love and acceptance of my child is a welcome change from the rejection and isolation we so often face. Know that every success our children will go on to have is the result of a foundation you helped lay. Know that every struggle and every accomplishment in your classroom are stepping-stones to a future they couldn’t have had without you.”
“I know you wonder if you make a difference. You do.”
She also appreciates the help she got from her family and all the special educators who helped Ayush Bhambhani reach his true potential.
The next and the final part of this story discusses the problems of being autistic in this current ‘modern’ India and our supermom shares a very important lesson for parents everywhere.
If you made it this far and actually read what this exceptional mother had to say, thank you for spending some time on this story. The posts can be long but in this day and age, it is important to realise that superstars don’t exist in our films or matches. There are people like you and me who face their problems head on, make a difference in this world and go unnoticed. We need to know about these people, understand their lives and get inspired.