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This is the second article of a two-part series on supporting parents of children with special needs. In this article, we look at self-care strategies and how to get support, which will help parents lead fulfilling lives—and help them raise children without feeling overwhelmed
Who can forget the heartwarming 2007 Hindi film Taare Zameen Par, which showed the plight of a dyslexic 8-year-old child, Ishaan? His father believes Ishaan is lazy and naughty, so he packs his son off to a boarding school where the child meets an art teacher, played by Aamir Khan. The teacher realizes that Ishaan has a learning disability, discovers his student’s artistic talent, and helps him bloom.
Like Ishaan’s father, many parents may not suspect dyslexia in their child who is having trouble with reading or writing. When their child is finally diagnosed with a learning disability or some developmental disorder, parents feel devastated and confused.
In an article titled ‘You Are Not Alone,’ published by the National Dissemination Center for Children with Disabilities (NICHCY) in the US, the author Patricia McGill Smith—mother of a child with special needs—explains the various emotions parents may feel on learning that their child faces a challenge. The first emotion may be denial: How can this be happening to me, to my child? What follows may be intense anger triggered by grief. Fear is another common reaction—fear of the unknown and fear of social rejection.
Parents may also feel guilt, believing that they may have somehow caused the problem, writes Smith. They may feel confused if they are bombarded with technical stuff without proper explanation. When parents realize that they cannot change the fact that their child has a disability or disorder, they may feel helpless. Disappointment and rejection of the child are normal reactions, but these could be very detrimental to the child. Smith’s message to parents is simple: All these feelings may flood your minds and hearts at different points of time and you are not alone in feeling them.
Dr Roopa Srinivasan, director of developmental pediatrics and head of clinical services at Ummeed Child Development Center (Mumbai), says, “Most parents, even if they haven’t received a formal diagnosis, have been suspecting that something is different about their child. They might have read up on the internet, so they have their worries and concerns. When they hear the news, their suspicion is confirmed. It’s a very difficult moment for them. The first response I have heard from many parents is that their mind went blank after hearing the diagnosis. They were unable to process any more information.”
A small section of parents said they felt relief when they found out at last what was different about their child and what they could do about it. For professionals, it’s important to remember to check at every stage how the parents are doing and clarify any misperceptions, Dr Srinivasan explains.
Dr Sumithra Prasad, counselor and founder-secretary of DORAI Foundation in Chennai and mother of a child with special needs says, “It’s difficult to cope when you learn that your child has special needs because you’re not prepared for this eventuality. Also, it’s not a temporary issue but something you have to live with for a lifetime. Parents usually feel utterly helpless and clueless as to what has caused this situation and what has to be done. It’s not just the parents who need counseling but also siblings and grandparents. Rehabilitation starts with the family.”
Once a diagnosis has been made, a multidisciplinary team is put together to address the needs of the child. Parents of special children should reach out to other parents in similar situations, either directly or through a support group. This way, they will get authentic information on the challenges they may face while raising their child. No one will understand their emotions and situation better than another parent of a special child.
In addition, parents must not hesitate to reach out to close family members (their own parents and siblings) and friends for support. Needless to say, parents of the child have to support each other at all times. They can seek the help of a counselor themselves if necessary.
“The approach should not be to ‘fix’ the child. The disability is an inherent part of the child’s personality. A child may be in a protective bubble at home and the therapy center. But once they step out into the real world, they may not be accepted. The park, a neighbor’s house, or even their school may not be inclusive. We are advocating that a special child should find a place in a world that appreciates neurodiversity. For this, we need a support system of family, other children who can befriend special children, neighbors, and teachers,” explains Dr Srinivasan.
Dr Prasad says it’s also important to “take a child-centric, holistic, multiple-intelligence approach to the child’s development.”
As the parent of a child with special needs, you too have special needs. Apart from more time, energy, and money, you need to have more patience and resilience. Here are some tips and self-care strategies that will help you take care of yourself and your child:
“My first suggestion would be that if parents get a diagnosis of a developmental delay like autism, as we did, start therapy immediately. When a child is young, the academic pressure is less, so the focus can be on building communication skills. Don’t go doctor-shopping or fall prey to quacks. Be guided by your development pediatrician (whom you should visit once in six months for an assessment of progress) and go only for evidence-based therapies.
Second, I think parents, especially mothers, must take care of their own mental health. Giving up everything for their child may put undue stress on the parent. I’m a medical doctor and I followed a flexible schedule so that I could be there for my children. Try to remain calm, otherwise your child will pick up on your anxiety.
Third, parents should avoid jumping from one therapist to another. Also, ensure that the therapy center is absolutely safe for your child.
Fourth, fight for your child’s rights! Spread awareness about the challenge your child is facing.”
– Dr Ashwini Joshi, mother of two children with special needs
“I’m 20 years old and studying for my BA (Hons) economics degree. I used to go to college but now classes are online. I’m also a keen fashion blogger. My other interests are drawing and cooking, especially trying out new recipes. My parents have always been very loving and supportive. I’m very close to my mom and dad—they are my best friends. I have an elder sister. I enjoyed school. I have lots of friends from school and college. I plan to earn a master’s degree in economics and take up a job thereafter. I’ve been going to Ummeed since 2002. I’m a youth advocate for Ummeed now and speak at conferences on mental health and occupational therapy. Sometimes I become a motivational speaker and tell my story. Of course, I don’t remember the challenges I faced as a little child!”
– Darshana, a young adult with cerebral palsy
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