Since her son was diagnosed with autism at the age of four, life has not been the same for Kulsuma Parvaiz, who in quest of treatment for the child ended up starting an autism centre herself.
Farmaan, now 15, is living with Autism Spectrum Disorder (ASD). However, for the first two years since he started showing symptoms like losing thinking, showing regression in speech, crying aloud and showing loud giggles, Kulsuma could not understand what was going on with her child.
“After failing to find any treatment in the Valley, I left my job as Vice Principal at a private school and shifted to Delhi where a doctor in a child development centre detected my son with autism,” Kulsuma, 42, who hails from Bemina area of Srinagar, told the Greater Kashmir. “The doctor suggested that I undergo some crash course on autism so as to deal with the child at home. This included occupational therapy, speech therapy, special education, etc.”
For the next six years, Kulsuma said, she had to frequently visit Delhi and Gurugram for the better treatment of her son and during this period she also completed the courses on autism. “I did all this to find a solution to reduce the difficulties and challenges my son faced. Attending workshops on autism, learning disability, intellectual disability, etc. and working voluntarily at the autism centres like Sunshine Special Centre, Sankalp Special Centre and Mom’s Belief Soch in Gurugram added to my experience,” she said.
On returning to Kashmir, Kulsuma, who has become the “first mother of a special child in J&K” to undergo the courses on autism, started a school for special children ‘Exceptional Minds – Centre for Autism & Early Intervention’ in 2019 at Bemina Housing Colony where 20 children are enrolled among whom four are from Below Poverty Line (BPL) families who are not charged any fee.
“Among these, 6 are autistic while the rest of the children have other neurological and physical conditions like Childhood Disintegrative Disorder, Attention Deficit Hyperactivity Disorder (ADHD) and Attention Deficit Disorder (ADD),” she said, adding, “The revenue generated from the monthly fee of the children is being spent on paying rent of the centre, salary of employees and upgrading the school. I have made it haraam (forbidden) for myself to spend a single penny from office income. I have pledged before God to dedicate my life for this noble cause – serving the special children. My husband manages the financial affairs of our home and all other expenses related to me and our son.”
At ‘Exceptional Minds’, the children are given Behavioural Modification Therapy, Occupational Therapy, Speech & Language Therapy, Oral Placement Therapy, Special Education, Physiotherapy, Physical Therapy, ADL/ Life Skills (Activity of Daily Living which focuses on being able to perform basic self-care tasks such as bathing, dressing, transferring from bed to chair, toileting, grooming, and feeding oneself), Music & Art Therapy, and are also involved in sports and activities that improve mental health.
The centre also offers rehabilitation psychological assessment, mental health counselling and treatment to anxiety, PTSD (Post Traumatic Stress Disorder) depression, OCD (Obsessive Compulsive Disorder) and stress.
With lockdown imposed by government in the wake of the second wave of COVID-19, the centre imparts online sessions for children and is organising webinars with the renowned national and international occupational therapists and special educators.
A lifelong member of Autism Society of India, Kulsuma said that 99 percent of the initiatives on starting autism centres or special schools across India are taken by mothers. “The reason is obvious. A mother cannot bear any difficulty or suffering of her child; so many start the centres as they have empathy with other special children,” she said.
The ‘Exceptional Minds’ founder said her dream is to set up a special home for children as well as adults as “today they are children; tomorrow they will be adults”.
In Kashmir, Kulsooma said, there have been several cases where parents have left their children with autism or any other disability at the mercy of the situation and many among these special children have been adopted by grandparents or later enrolled in any special home.
“In one such case, a child with autism was even adopted by uncle. This is a matter of concern predicting where our society is heading towards,” she said. “There is a need for creating awareness in this regard so that these children are not ostracised but accepted by the society. After all, they are God’s special children.”