In my last post, I talked about the extended village that the family of a special needs child requires. And this village will not be complete without a battery of physiotherapists, speech therapists, occupational therapists, behavioral specialists etc. that become an integral part of our lives.
Soon after the diagnosis, while you are still coming to terms with the life changing prognosis, you have to start looking for the right therapists for your child. Usually, your neurologist will suggest some therapists or your hospital will have a therapy wing attached to it, but I think it is still a hit and trial till you find the right therapists. And slowly build your tribe.
The beginning….
I remember those early days ….and months… Anvay was just 8 or 9 months old, on heavy steroids because, on top of everything else, we had also discovered he was having seizures. Seizures that, if left uncontrolled, could make his condition worse.
And, in that fragile state, he had to endure therapy. It’s not easy on a child – or even an adult. When tight, spastic muscles are pulled and straightened, it hurts. Every joint, every limb is stretched and moved—by strangers, no less. And my tiny infant had to go through it all.
For days he cried and screamed in pain…. Almost through the hour….and so did I… my tears just flowed. All I wanted to do was to hug him and run away somewhere far. Seeing your baby cry and not being able to do anything about it – nothing can be more gut wrenching than that. We played nursery rhymes on loop to distract him… kept water and biscuits at hand… nothing helped. For days, just the sound of nursery rhymes made me nauseous.
I think I was saved by my work. Therapy sessions were usually in the morning, and I had to be at work. So, my mum and Kapil would take Anvay. And my dad took care of Abeer at home along with our house help.
Search continues…
While we had found some therapy options for Anvay, I kept searching—never quite sure if we were doing enough or doing the right thing for him. With brain damage came a host of other conditions, like vision impairment. And the internet? It opened the floodgates to a dizzying array of therapies—occupational therapy, neurodevelopmental therapy, the Anat Baniel method, the Glenn Doman method, vision therapy, hydrotherapy, hippotherapy… it was overwhelming. Every work break turned into a research mission—reading about different approaches, searching for organisations in India that offered them, comparing, hoping.
In December 2017, about five months after Anvay’s diagnosis, we went to Bombay to spend New Year’s with my sister. I had a list of therapists ready to visit. One organisation I found on Facebook—its name escapes me now—finally explained CVI (cortical visual impairment) clearly and taught us some exercises. Another therapist I found through FB showed us simple home routines using a doll.
I had other visits planned across the country for early 2018. But then, in February, everything stopped. My dad passed away. That day, my mum had taken Anvay to therapy, and my dad was home with Abeer when he suffered a stroke—and never recovered.
And yet, with grief in our hearts, we continued our search. We had already booked appointments in Vijayawada and Vellore for late February – so we went. A fellow parent I’d connected with on Facebook told me about a doctor at LVPEI Vijayawada, an expert in CVI. My internet deep dives had also revealed that CMC Vellore had a department focused on vision therapy. CVI is still poorly understood, even in Western countries, so finding the right specialists felt critical.
Around the same time, I discovered the Glenn Doman method online and bought his book. Their approach was fascinating and results absolutely amazing. I soon found out about a couple in Chandigarh who had opened a centre based on Doman’s principles, and in May 2018, we all traveled there.
Then came Amazon’s nudge—recommending Anat Baniel’s book, knowing I had purchased Doman’s. I bought it and got hooked. Anat Baniel had developed her own methodology in San Francisco, with stories of incredible success. Coincidentally, my mother-in-law was visiting San Francisco at the time, so I asked her to check it out. She did—and came back with surprising news: two therapists in India had just been certified in the method.
Building our tribe…
This is what our first year after Anvay’s diagnosis looked like—trying to understand his conditions, figuring out how to support him at home, and searching for the right therapists.
Over the past seven years, we’ve slowly built our tribe—across cities and even countries. We are a bit of a nomadic family (if you’ve been reading my blogs, you’ll know!), so it has been crucial to find the right support for Anvay, wherever we go.
Back home in Noida, we finally settled on a wonderful therapy centre called ‘Tickles’, run by Arzu and her amazing team. Anvay had his favorite didis there and would only do his sessions with them.
In Bombay, we found Arti Deo, one of the first two Anat Baniel practitioners in India. Her gentle touch worked magic—Anvay has never once cried with her. We saw some of his earliest breakthroughs under her care. His vision improved noticeably, and by the end of 2018, he was pulling himself up to sit. Around the same time, my mom discovered hydrotherapy during a stay in Bombay, leading us to Aarosh, where Anvay now does water sessions with Deepti and occupational therapy with yet another group of didis! (click on the insta link to see his joy!!)
In 2021, when Anvay joined us in Almaty, we found a therapy centre where Anvay attended full-day sessions—from occupational and sensory therapies to hippotherapy. Later, when my physiotherapist brought in an occupational therapist, we switched to working with them. Nurgul, his therapist reached out to him despite the language barrier.
And now, in Istanbul, we’ve found a wonderful physiotherapist, Fatih, who comes home. He has built a great rapport with Anvay, and they get along beautifully. Still, we’re hoping to find a clinic that offers multiple services and specialized equipment.
These centres have never been just treatment spaces for Anvay—they are his world. His social circle. Unlike most children his age, Anvay doesn’t go to school, doesn’t have classmates to share his days with, or neighborhood kids to run around with. His playmates are his brothers and cousins, but on a daily basis, it’s his therapists—his didis—who are his constant companions.
They are the ones who greet him with wide smiles, who cheer him on when he tries something new, who patiently coax him through tough sessions, and who share in his laughter and his small, hard-won triumphs. For Anvay, his therapists are much more than that—they are his circle of love.
It’s not only about stretches, sensory play, or fine motor skills—it’s about building trust and relationships. It’s about creating a space where a child like Anvay feels seen, accepted, and celebrated. Where routines become rituals, strangers become family, and therapy rooms become playgrounds of belonging.
So while we continue to search for the next right place in Istanbul, I carry this truth with me: wherever we go, as long as Anvay finds people who look at him with kindness, who laugh with him and cheer for him, we will have found more than a therapy centre—we will have found a second home.
March is Cerebral Palsy Awareness Month and this is my second post on the topic this month. Please read my posts on disability and inclusion here.
This blog post is part of ‘Blogaberry Dazzle’
hosted by Cindy D’Silva and Noor Anand Chawla.
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Regards, Sakshi aka tripleamommy
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