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Submitted by PatientsEngage on 2 July 2017

Janaki Balakrishnan is not just a parent whose son has multiple disabilities, but also a Special educator and an active member of parent support organisations. She shares her observations of parents who are in similar situations and what they should ideally avoid for stress-free caregiving roles

I am a parent of a young adult with special needs and live in Chennai. My 22 year old son (only child), is deaf and mute and has multiple issues such as cerebral palsy, seizures, profound mental retardation and autism spectrum disorder. These are the tags that I have gathered from his various medical and psycho-educational records. Broadly, they all come under one umbrella “Intellectual and Developmental Disabilities”.

Finding a vocation

In his early years (from 10 months old), I used to take him to an early intervention centre, where parents are trained to stimulate or train their young children to develop skills. Reeling from shock and fear as well as being burdened with the thought of having nowhere to go, this place was a jump start for most mothers of young children with disabilities. It was a half-day programme, very regimented and result oriented. They also handpicked young mothers who could potentially become a special education teacher by offering them training in the school itself. The mothers were also encouraged to start a special school themselves if they were up to recruiting. I got picked up and so began my journey of becoming a teacher in this field. I started as a classroom special education teacher and with further research, I became a documentation associate. My international teaching stint in USA also helped me become a faculty in special education and psychology. Additionally, I also became a member of a parent association based in Chennai and now, a member trustee in two Chennai based organisations that provide special education services and vocational rehabilitation for individuals with intellectual disabilities. It is about 17 years now that I have been exposed to various roles in the service of intellectual disabilities.

When Parents become better Caregivers

I do believe that my professional development and experience has helped enrich my role as a caregiver to my son and am very thankful to all those who made this possible. This was, as it were, almost an opportunity for my own personal growth and development, and I would like other parents in similar situations to get thus inspired. Parents of children with conditions go through intense stress. My involvement with teaching as well as being a member of parent associations helped me deal with stress in a big way. The overriding motto, I feel, is “Get in, Get on and do Not Think of Getting Over”.

Often, it is the all-pervasive concern for an uncertain future which inhibits parents from taking peoper care of their children. If you are a parent of a child with disabilities, you need to think about the present as much as plan meticulously for the future. There is never a quick remedy for either. For a parent, constant support (at varying degrees) and planning much ahead for your child is essential.

Understanding your child’s strengths

My years with my son has taught me to always look for his strengths instead of weaknesses and not to push him over the edge. High expectations and overworking are two major issues that can escalate problems beyond control when dealing with your child. It would, instead, be wiser to find your child’s comfort zone and develop on that. It is better to take baby steps with him at every juncture, and discover and develop what works best for him.

A life-long task

Yet another pertinent point in this regard would be that families or parents cannot be taken for granted to always assume the role of a caregiver for a child with special needs. It is a long, hard and enduring act of patience, effort, acceptance, resilience and resourcefulness. Unlike typical parenting where the role gets less arduous as the child grows into an adult, this is lifelong parenting. The child will need to be taken care of -- fed and, kept clean and safe and healthy throughout his life, together with specialised training and supervision. But parents grow weaker and older with time, and dependent children are likely to be more of a burden with every passing year. Being a parent, I tell myself, “Brace yourself and build your support” as there is no other way around it.

Points for Parents to keep in mind

It has been painful for me to often come across young parents who have developed chronic illnesses like heart ailments because of parenting a special child.

The problems are usually manifold:

  • parents may have poor mental or physical health,
  • constraint of time or resources,
  • lack of social support or even suffer from family or marital discord.

The worst part is dealing with lack of awareness, stigma and misconceptions about the child’s condition. In some cases, extended family members can be demoralising and can make parents feel guilty of their situation. There could be others with wrong advice.

In many cases, parents keep their child with special needs as priority in their life and in the process deprive themselves of opportunities, recreation or social activities and even personal space. This could not only be detrimental to their own well-being but also for the child with special needs with respect to long term care and management.

A fulfilling family life is very crucial to keeping all the pieces together for both the child and the parents. For parents, the burden could become more bearable if they join parent support groups and share and exchange ideas and problems. In the long run, it has been seen to be beneficial with long term effects.