By Ashima Mittal and Punya Srivatsava
Being a parent to a special needs child is an onerous journey, the one which comes with a unique set of challenges and surprises. Ashima Mittal and Punya Srivastava try to find out ways in which such parents can take care of themselves amidst a plethora of responsibilities
Parenting, on any given day, is a challenging task that comes without any instruction manual. One can come up with a thousand platitudes about parenting in a fraction of second _ parenting is one of the most profound form of commitments, parents nurture a child to become an individual, they shape the way a child responds to his or her physical and emotional environment. Yet, there is something that escapes these platitudes; parenting more often than not is a negotiation where parents try to balance between the expectations society has from them, with their own expectations from their children.
Add to it the onus of parenting a child with special needs and you get a cauldron brimming with back-breaking efforts, rejections, failures, denials, glimmers of hope, courage, perseverance, and plenty of love and lessons. These parents have to confront their own biases as well as battle the societal norms to create an environment of support and acceptance for their child. They go through a journey of inner transformation that allows them to not only learn to be sensitive towards their child but others too around them. A peek into the world of parents raising a special child reveals a journey fraught with unlearning, and learning afresh of what it means to be a parent.
These parents stitch their everyday life piece by piece to create a new normal for their family. Their stories are emblematic of the hope, joy and support they found in their challenging lives. A glimpse into their lives teaches us how adversities can usher in lasting spiritual transformation and the way they can change our perspective towards life for the better.
Making a different life
It is traumatic to see your child battle with a condition that will accompany him for the rest of his life. Needless to say, as primary caregivers, parents in these cases have many roles to play and many additional responsibilities to fulfil. Each day brings a new challenge to them with regards to their child’s special needs. This further gets compounded by the task of finishing daily chores, arranging for special classes and therapy sessions, maintaining round-the-clock vigilance over them, performing social duties, and maintaining relationships. In short, these parents get the rough edge of the stick from life.
Consequently, most of them are always stressed out and forget to lead their own life. Doctors, medicines and therapies form a vicious cycle and many a time, the joy of parenting escapes them. Dr Mahalakshmi Rajagopal, a Delhi based alternative therapy practitioner and director of Sahayam Intervention Centre, reflecting on her experience with healing parents of special needs children, observes, “Parents with special needs children are special as well, and, hence, need to take care of themselves first, so as to take care of their children better. The emotional baggage of parents in these cases seldom gets addressed.” In such a scenario, maintaining emotional wellbeing of parents is essential so that they feel motivated and can preserve their sang-froid relentless in difficult situations.
Houston (USA) based Joydip has found an emotional outlet in blogging about his son, Aditya’s autism. He says he does so in order to find and form a community of kindred souls with whom he can barter experiential learnings. He shares how arranging for a support system inside and outside of the family tremendously helps the child and the parents alike. “The selfless attention and care that parents and grandparents give to children, sacrificing personal life and sometimes even professions and careers; encouraging joint family environments, significantly help autistic children,” he writes.
Merry Barua, director of Action for Autism, drawing from her experience with her son, says, “Parenting a child with special needs is not just about reworking the relationship between the parent and the child; instead it is a way of life.” Recounting an experience with her son, she says, “There was a time when Neeraj went through a serious regression at the age of 18 and I had to start working from scratch with him. Whenever I felt angry or frustrated with him, I told myself that his actions are a form of communication and he is acting this way only because he wants to convey something. The moment I adapted this attitude, I realised that I needed to understand him and through understanding before reacting, I was able to make my way out of the situation.”
This helped Merry in not only dealing with her son but also with people who would often ask her what was wrong with him. “I realised this attitude is simply because of lack of awareness. And I cannot say that I have accomplished this learning.It’s an everyday process. I remind myself to be empathetic to others and myself each day. Neeraj has really taught me to do all this and that has really been the driving force behind starting Action for Autism. My intention was to equip younger parents with the right kind of training to help their children. I have learnt that things don’t always go as we plan them to, and each incident in life however unplanned has a purpose to fulfil.”
Another parent, Aarti Khurana, a Delhi based teacher, on sharing her journey with her daughter, says, “When I learnt that my daughter was autistic, I didn’t even fully understand the term. It was only after rigorous self-education that I learnt what it entailed; giving Amrit (her daughter) a sense of security was something I felt was very important from the very beginning and it also gave me confidence in dealing with people who didn't understand her.”
She further adds, “I see a lot of parents feeling embarrassed about their child. However, I feel that once we accept our children for who they are, it becomes easier to deal with society. Even while Amrit was growing up, there were times when I had difficulty in managing her behaviour, but I told myself, I have to give her time and everything will fall in place. That helped. Also, maintaining a good support system around themselves is something is the utmost favour the parents can do to themselves.”
Finding avenues for self-preservation
Priya S. is a mother of two out of whom one is an eight year old boy with congenital deformity in his right leg. She shares how journeying with her son has been a tremendous learning experience for her, although one fraught with heartbreaks and tears. “But it has also been a time when I have made conscious effort to break free from the web of despair and helplessness. While the support of loved ones is truly a blessing, tackling the inner demons is a quest that has to be overcome individually. Keep away from self-pity. Coping with the harsh truth is a necessity and the sooner you come to terms with it, the better it is for you. Be aware of your strengths, muster physical and financial support, and work towards improving the situation,” she says.
Gopika Kapoor, author of Spiritual Parenting and Spiritual Pregnancy, who has a 12 year old autistic son, shares how she sees her inclination towards Vedanta as a gift from the universe to help her deal with her son’s condition. “There have been times when I had been down in the dumps but thankfully, each and every time words from Vedanta helped me snap out of those situations rather quickly.”
She further states, “As a parent you realise that parenting is hard work. However, that realisation doesn’t stop me from living my life.” She makes it a point to be as socially involved as possible; the whole family goes out every once in a while and celebrate occasions together. She also gives due credit to both the sides of her family for rallying around her and her son and forming a safety net around them where they all can just be.
She emphasises upon being open about the child’s condition. According to her, encouraging queries from people around is any day a better option than hiding the child because of the fear of ignominy. This releases parents from carrying the unnecessary burden of shame and embarrassment, and also relieves the child of social anxiety on behalf of his parents.
The experience of raising a special needs kid comes with an added pressure of putting everything on the backburner for the sake of the child. But this ought not be the case. Every other relationship in the family also needs parents’ time and effort in order to sustain; especially those between the parents and other siblings. “If there is a normal sibling at home, it is important that parents make that child understand the situation,” says Priya.
In a family with a special needs kid, it might happen that the other sibling feels left out or overlooked as parents’ energy and attention is mostly directed towards the special child. It is likely that this child may face a lot of turmoil. “It is up to the parents to explain the challenges to the child. This is necessary because, in case the normal child is an older sibling, the time spent with him or her earlier as well as the nature of activities indulged with them change after the arrival of the differently-abled child. This may create animosity between the siblings and the only way out is to involve the normal child in taking care of the sibling. When the children are older and are more aware of reality, he or she may deal with the situation better,” Priya adds.
As another step towards self-preservation, Gopika suggests parents, especially mothers, to take out time for themselves. “Have something beside your child; have your ‘me time’ every now and then,” she exhorts. Gopika shares an instance from her work (she is associated with Umeed, an autism intervention initiative in Mumbai) where she met a family with a severely autistic child. The mother told her how religiously going to the temple was her ‘me time’ amidst the duty filled routine in her life, and that which gave her strength to relax and then gather herself together.
“A holistic approach to parenting is very important in these cases,” explains Dr Rajagopal. She recounts a case that she encountered in her practice. One of her patients whose son had been diagnosed with ADHD and below normal IQ was having a lot of difficulties in coming to terms with the situation. After the mother decided to take a few sessions of EFT (Emotional Freedom Technique), she was able to slowly unlock her flow of energy. “EFT is a form of psychological acupressure where we tap on certain energy meridians on the body. It gave her the emotional strength to look out for what’s best for her son. And luckily, they were able to figure out their child’s interest in tennis. I have observed that things start moving once the parents get the right psychological support.”
Another parent, Vadodara based Ritu Rassay, shares her journey with autism and the transformation she went through thanks to the condition. Her only child, Akshat, was diagnosed with autism at the age of two. “There were times when the whole day I kept crying but now I am thinking positive. Doubts still assail my mind, but days are different now.” After the initial period of denial and grief, Ritu decided to actively do something about his condition, and underwent mother-child training programmes which helped her learn about various therapies. “After these trainings, my son responded much better than before. I am also a changed mom now. My thinking has totally changed. It is very much logical and scientific now. It’s like autism has shown me a path to see life in a different way.”
Joydip writes about his life, his son and his son’s autism in his blog: “I am trying. I find myself becoming more tolerant, more open minded, more respectful of diversity and more aware that my view of life may be the common one but not the only one. He makes me a better person every day and influences me positively!”
As Gopika puts it succinctly, “parenting a special needs child is not a sprint, it is a marathon. You have to brace yourself accordingly.”
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