“Someone recently asked how my life would differ had I not had a child with a disability. I can tell you honestly, undoubtedly and genuinely, it would be way less exciting, less interesting, and less fulfilling.” Preeti Savur’s story ends with this final post sharing her thoughts on that one person who made her life this exciting.
Ayush Bhambhani is an amazing artist and the picture below is more than enough to prove that. For him, art isn’t just a form of expression or something that keeps him busy, it’s a form of therapy.
“Art has many benefits for children with autism. It brings joy in expressing their ideas and teaches them how to be creative.” Preeti says, “My son enjoys doing all sorts of art in school from cutting, pasting, colouring, painting, moulding, and sketching. These help him develop his fine motors skills by strengthening his hand muscles. It also teaches him to think and organize his ideas through creative thinking.”
Art Therapy, according to her, is an effective method of expressing a child’s feelings through images and colours which can’t be expressed through words.
She uses colours to understand her son, “According to colour psychology, bright red or scarlet indicates enthusiasm and love of life, while orange means optimism that radiates warmth and happiness and gives us strength in difficult times. I can see and feel that my son is a friendly, enthusiastic and happy person through the choice of vibrant colours that he uses in his art.”
Preeti explains that art therapy helps children with autism stay calm by refocusing their attention through drawing. “When things around him overwhelm him, he tends to get nervous. This could be too exhausting for him. Drawing, colouring and painting help him divert his attention. It is a good therapy for his sensory issues.”
For Ayush, art therapy is a form of recreational activity that keeps him busy for a period of time. “It helps him concentrate on completing a particular task which helps in improving his concentration and attention.”
His accomplishments are an example of how people with special needs can be successful and make a difference in this world, and yet even today most people (even the highly educated ones) have doubts about the futures of such children.
To them, our supermom says, “autism does not diminish a person as a human being. Autism awareness can’t stop with a list of things that make people with autism different. Because what is essential is the constant awareness of what makes us the same. All of us are created equal, regardless of our differences, and simply by virtue of our shared humanity, are created equal.”
She adds, “That word ‘all’ includes people with autism.”
Raising a child is a journey on its own. For Preeti, it is a life full of presents, “Our journey with autism helped shift our perspective and come to a place of happiness and contentment, we are today truly able to identify and appreciate the gifts of raising a child with autism.”
For both parents, the gifts are:
- The gift of experiencing true freedom by letting go of expectations and completely accepting what is real.
- The gift of being his parents. As much as I would never have wished for Ayush to have autism, raising him is a significant piece of our life story, which has strongly impacted who we are today and what we have to offer to the world.
- The gift of true friendship. There is so much love, support, and understanding in this diverse group of people we call our friends.
- The gift of celebrating the littlest things like the first time Ayush rode a cycle, or the first time we went for a movie and sat right till the end, or the first time we sat down to a family lunch/dinner in a restaurant without any incidents or the first time when I took him for a haircut and he sat in the chair for ten minutes and actually got a haircut. The list is endless.
- The gift of choice. I have a choice in loving our life and living our lives or allowing grief, stress and anxiety to cloud our every moment. We choose to embrace life to the fullest, to experience joy, and to be open to infinite possibilities.
- The gift of simplicity in a child with so much complexity. Ayush may never know greed, vanity or jealousy. He lives his life simply, driven by his emotions.
- The gift of his spirit. Witnessing Ayush’s pure full body uninhibited joy is one of the most beautiful energies I have ever known.
Unabashedly Ayush is a book about Ayush’s journey, so far. In a world full of possibilities and opportunities, children like Ayush can accomplish the impossible and extraordinary. All they need is the space to dream, explore, and just be themselves…Unabashed.
These days, it’s easy to do a simple Google search on the word autism and read whatever links the search results show. Most would assume that just because they know the disorder, they understand the challenges faced by families like Preeti’s. She sheds some light on a few important lessons she learnt over the years. (Lessons you might not find on Google).
“Ayush has taught me countless things over the past 16 years by just being Ayush…
If you can’t handle the truth, don’t ask. One of the unique things about Ayush is his innocence and innate honesty. He means no harm but has no filter. Lying is not something he is capable of, and that has gotten him in hot water more times than I can count. More than a few times I have heard, “Ayush, are you excited to see me?” quickly followed by, “No.” I always laugh, thinking what kind of world it would be if everyone spoke their mind freely.”
“Not every struggle is visible. You don’t have to bleed to be hurt. Autism is an invisible disability – even if you catch my son flapping his arms or murmuring to himself, it’s unlikely you would know what was going on.”
For her, this is a blessing as well as a curse, “To be honest, sometimes I selfishly wish my son had a disability you could see like you just looked at him and you knew. People are more accommodating, more patient, and more understanding when they know someone needs extra attention or leeway.”
“People look at my son and see a 6-foot-tall, handsome 19-year-old, and then his subsequent behaviour is ‘unruly’ and ‘weird,’ and his lack of eye contact is ‘rude and disrespectful.’ You set certain expectations for someone the second you look at them, and when they fail to meet those expectations, you make judgments. I have learned that you never know what is going on in someone’s life and to go into each situation with an open mind. Disability or not, give them the benefit of the doubt. You don’t have to see it for it to exist.” Imagine living in a world where every person thinks like that.
We grieve when we lose someone, but for her, grieving wasn’t about losing someone, it was about losing the life she had imagined for herself and her family. “I once told a journalist that receiving an autism diagnosis is similar to hearing that your best friend has died. Needless to say, they were speechless. Is it harsh to compare an autism diagnosis to death?”
She answers, “Maybe, maybe not. But you are grieving, and you are grieving a death, the death of the life you had imagined for yourself and your family. I was in denial, I was mad, I was upset… don’t feel guilty for feeling those things. It’s important. I still grieve. I grieve all the time. I grieve for the life my son could have had, but I’ve cut it down to about a three-second cycle because being sad and angry doesn’t do much good for anyone.”
You can’t control everything. “I am a planner. I make no less than ten to-do lists a week, half of my salary goes to post-its (Ok, exaggeration), point being, I like control, I like having a plan, I thrive off of organization. With someone with a disability, you often lose that.”
She explains, “You don’t know what milestones your child will hit, regardless of how much time and money you invest; you don’t know if your Sunday morning errand run will be interrupted by a meltdown.”
And finally, she says that it never hurts to simply say, ‘Hello’.
Let’s talk about this one annoying habit us Indians have. We don’t know how to behave or conduct ourselves around a differently-abled person. To this, Preeti says, “Differently-abled or able-bodied, we all have the power and responsibility to make society more inclusive for everyone.”
From her own experiences and her time with the differently abled community, she shares some ways we can make our world more accepting of people with special needs:
- Employ people who are differently abled.
- Increase differently abled representation in the political setting.
- Integrate differently abled history in school curriculums
- Promote social inclusion in schools
- Employ more actors who are differently-abled in our mainstream media.
- Provide college scholarships to the differently-abled and also to differently-abled athletes.
- Make air travel universally accessible.
- Realize that people with disabilities are humans too. Be respectful, above all else.
- Never talk down to someone with a disability.
- Don’t use labels or offensive terms, especially in a casual way. Labels and derogatory names are not appropriate and should be avoided in a conversation with someone who is differently abled.
- Speak directly to the person, not to an aide or translator or caregiver.
- Be patient and ask questions, if necessary.
- Don’t be afraid of asking about a person’s disability.
- Recognize that some disabilities are not visible.
Since we are on the subject of autism awareness in India, there is another question that needs to be answered, Are Indian schools equipped to care for children with special needs?
Preeti begins her answer with just a simple estimate about our schools, “Some estimates say that India has 12 million children living with disabilities. Only 1% of them have access to schools.”
She adds, “Teachers are not trained and schools don’t have the infrastructure to deal with children with disabilities. People, in general, are unaware because until very recently, our children were only confined to homes. Without knowing better, people get awkward in their presence. Especially at public places they would either stare at our kids blatantly or look through them as if they are invisible.”
“I know, we can’t brush everybody with the same paint and one does come across wonderful people who look beyond the disability, but they are few and far between.”
For parents like her, “People’s attitude is not the only thing parents have to fight with. There are other things like early intervention and therapies too. As far as the therapies go, they are available, but one has to pay (trust me they are not cheap) for them to have at home or private centres catering to these therapies and we all know how convenient it is for us parents of special needs children. This is one of the reasons why most of the children don’t get any therapy at all.”
Times have changed, our schools have changed, but we still need to improve the system, “With new laws and amendments, schools cannot say “no” to our kids but schools flout it openly. They will take kids who are wheelchair bound or are deaf over kids with intellectual disabilities. So either you go fight and waste all the time and energy that you have got left after caring for your child, or your child goes to some unknown smaller school with no special educators or needed set up.”
She also says that there are schools that are sensitive to such cases and work hard with the children, “It all comes down to how you as a parent are ready to fight for your child’s rights.”
She agrees that things are changing gradually. Parents are more demanding, they know what is happening around the world, Preeti adds, “they are asking questions, they are sending their kids to schools and hobby classes and dreaming for a better future for them. They are sensitizing people. I know it will take time but we will get there. We are at a better place than where we were 10 or even 5 years ago, and I am certain the future of our kids holds much more promise than it ever did“.
We have said this before, Preeti found inspiration in her children, but how did it happen?
“When I became a parent, I became a better person. From the moment I first held my son in my arms, I recognized the unfathomable responsibility and honour with which I had been entrusted.
She writes, “From the perspective of a loving parent, seeing the beauty in each of them has helped me see the beauty in others. They have made me a better person.
Seeing my children discover their special talents reminded me of my own passions and showed me what I might do. My son’s gift for art and daughter’s gift for dance inspired me. I am proud of my children’s achievements.”
Her children are her life’s most precious gifts, “I have been enriched by the love they have inspired in me. This above all else has made my life richer and fuller than it otherwise would have been.”
Despite the challenges of motherhood, the challenges of raising a child with autism, Preeti says she is happier and more fulfilled than she would have ever been. “I have also realized that it is my true passion and purpose to help others to live their best lives, which led me to become who I am today. I owe it all to my son, I am what I am today because of him…
When he looks into my eyes, it’s a feeling I’ve never had with another human being. It’s as if his soul sees my soul.”
Finding out about her son changed her, made her a better person, “I began to see each person as overcoming his or her own struggles and handicaps, and it made me love freely.”
She concludes with one final thought about her son, “Whatever the reasons, sometimes I feel his autism is front and centre, but his accomplishments take backstage, and I do not want it to be like that.”
“I burst into giggles like a schoolgirl when my son hits a new milestone. I think he is incredible, and I love every single thing about him. I know that I am blessed to have him, and I would not change one thing about who he is.”
There’s so much to learn from this story about a mother, her family and her son. Reading or writing about such people not only gives us hope, it shows that there can be some happiness in this world. We just have to look for it.