Last Updated on January 18, 2024 by Neelam Singh
Siddharth is a 21-year-old handsome boy. His signs of autism were classified as severe as he grew older. Today, he is a lot more settled than ever. Siddharth has walked a long journey in which he has been wholeheartedly assisted by his parents. His mother, Priti Vadakkath, is an artist but she couldn’t pursue it professionally as Siddharth had become her priority. From one therapy to another, round-the-clock monitoring and spending time with Siddharth consumed all her time. When her husband returned from work, he took over and that’s when she occasionally painted. Her son also had a sleep disorder. He would wake up at 12:30-1am and start crying. He is non-verbal so that made things more difficult. It was exhausting and emotionally draining. “My husband encouraged me to paint as that was the only thing I did for myself. It was therapeutic and initially my work revolved around children, childhood and my own memories of childhood. Honestly, I couldn’t have raised our son without my husband’s support,” Priti shares.
Her husband was in the Indian Navy and posted in Kerala. For Siddharth, he took a posting to Bangalore where interventional therapies are better. He used to come back from work early to help me out and finally took voluntary retirement,” says Priti, who now exhibits her art widely.
A special motherhood
Autism spectrum disorder is a neurodevelopmental condition. Those afflicted by it may exhibit distinct behaviours, modes of communication, interactive patterns. While some may be non-verbal, others may possess sophisticated conversational skills. Some require extensive support in their everyday life, others are able to work and lead normal lives with little to no assistance. Some struggle with confined or repetitive behaviours or interests, as well as social communication and interaction.
Caring for differently-abled children presents unique challenges for mothers, encompassing emotional, physical, and societal aspects. The emotional toll can be profound as mothers grapple with the stress of managing their child’s special needs, navigating a complex healthcare system, and confronting societal stigmas. The constant worry about their child’s future and the potential lack of understanding from others can contribute to feelings of isolation.
A study of a differently abled child’s mother in relation to quality of life published on Researchgate in 2019 was undertaken with the purpose of comparing the quality of life between mothers of children with intellectual disabilities and mothers of normal children.
150 mothers with kids between the ages of 6 and 14 took part in the study. Mothers from Uttarakhand were recruited into two groups: fifty mothers of children with intellectual disabilities and one hundred mothers of normal children. The mothers completed the World Health Organisation Quality of Life-Brief (WHOQOL-BREF) in Hindi in order to collect data. There was a noticeable distinction between the two groups. Compared to mothers of typical children, mothers of children with intellectual disabilities demonstrated a lower quality of life.
Challenges are different
Women from different strata of society experience different challenges. Some may deal with financial, physical and social, while others grapple with psychological issues. They experience denial, depression, unacceptance, and self-blame.
Cleft lip is not a disability but a deformity for sure and a doctor whose NGO provides treatment to children born with cleft lip in rural Karnataka reveals that he comes across mothers who think they are to blame for their child’s condition. “There is so much pain and sadness in their eyes. They feel it is because of them,” says the doctor, who doesn’t wish to be named.
Pratima Bajpai wanted to become a professional social worker and holds a master’s degree in the field. She was 27 when she gave birth to a boy who had Autism spectrum disorder (ASD). His 27 year-old son Ishaan is non-verbal and communicates through limited words and sign language. Initially, she found it difficult to accept but soon immersed herself in caring for him along with her husband. “From 8 in the morning till 7 pm, I was out for therapies, counselling sessions, school, and sports activities. Where was the time for myself? It was difficult to take him out to a public park if he was not in a good mood so we were really cut off from the world for a long time. We didn’t attend family functions, or social gatherings. I was exhausted but there was no time to even think about it,” recalls Mumbai-based Bajpai.
What helped her was bonding with the mothers of other autistic children. “We formed great relationships. We started learning with each other and drew strength from one another. It became my support system and it really helped me,” she adds. Today, Bajpai runs her own school for children with special needs.
For 34 year-old beauty therapist and make-up artist Tanya Bernadette Lincoln, having an autistic child was nothing less than shocking because her first child, a girl, was absolutely normal. “There were times I had a melt-down taking care of him because I wouldn’t get the desired results. I couldn’t step out, as he needed constant care. I kept faith in the Lord and believed that he would get better.” Today Shayden is 7 and much better. When Lincoln goes away to work, her daughter or her husband look after him.
Determined to change the society
Mothers of differently-abled children often find themselves advocating tirelessly for their child’s rights and inclusion, which can be emotionally exhausting. Priyaja Madhu, mother of a daughter who has cerebral palsy. A native of Thrissur, Kerala, has initiated a project aimed at providing emotional support to mothers who are navigating the challenges of raising children with disabilities.
Fourteen years old Aman Nishad has Angelman syndrome, a hereditary condition affecting mainly the nerve system. The illness is characterised by delayed development, speech and balance issues, intellectual incapacity, and occasionally convulsions. Those who have this condition frequently laugh and smile. “It was Salma who handled and consoled me. I would have break-downs but she stood rock solid,” says Salma’s husband Nishad on her behalf. Salma, who is conversant in Malayalam, communicates with us through her husband. Like every mother, she had her share of disappointment, sadness and emotional duress, but she overcame them. “I was in Saudi Arabia and I would shuttle between India and Saudi so it was she who had a big role in raising the child. My in-laws also supported her. In this case, it was more tough as Aman has balancing problems. He can walk inside the house but not outside without support. When he was small, she would carry him for long hours and she would get back pain afterwards,” shares Nishad.
He adds that society had a negative approach towards their child. “He wasn’t treated with warmth. At family functions, social events, he was given unkind looks but Salma persisted. She said she didn’t care. Society needs to accept Aman, which will only happen if we take him out. Things have changed now. People now try to strike up conversations with him. He is always smiling.”
In the face of these challenges, mothers demonstrate remarkable strength and adaptability, acknowledging the significance of their emotional well-being in providing the best possible care for their differently-abled children. Through mutual support and understanding between spouses and families, they navigate this intricate path, fostering not only the growth of their children but also their own resilience and strength.
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