As the norm goes, the focus is always the “child”. It is no different in case of the special needs child as well. Everyone is always concerned about how the child is doing? How is he recovering? Is he walking or talking yet? Nobody ever thinks about the mental health of parents of these children. Very often the child doesn’t realise what’s going around him. It’s the parents who are the real people struggling with the diagnosis. Worries and concern haunt them right from the time the child is showing delay in attaining his milestones. After doing a detailed Google research the parents who somewhat know the diagnosis, get it validated after visiting the pediatrician or development specialist. That’s when the reality jolts their entire universe. Going through the stages of denial, seeking 2nd, 3rd, 4th mutiple opinions with a hope of some doctor differing the diagnosis. The couple goes through stages of why me?”,”why my child’, “what wrong did I do during the pregnancy”, at times being held responsible by others and ownself for the child’s condition in case of mothers. They also undergo a loss of imagined parenthood , what they had imagined to do with their child. Here , it’s a path completely untravelled and unknown.
Then starts the other struggle of finding the right therapies, therapist, and the time slots. It takes a lot for parents to juggle their working hours from offices, manage household responsibilities, at times managing school and study schedule of the other child. Very often one of the parents is forced to take a sabbatical in order to be consistent for these therapies and find time to follow the home program for the child.It is easier said than done to give up a fulfilling career and also to mentally be ready to depend on your spouse’s earnings. This is often the reason for a marital discourse and a feeling of inadequacy.
The constant worries like will my child ever recover? Will he ever talk? Will he ever be able to go to a normal school? Will he have friends? Will he complete his formal education? Will he have a degree? Will he be able to win his own bread? Will be able to get married and have his own family? What will happen after us? These concerns pre occupy the minds of parents with special needs children causing insomnia and a feeling of hopelessness.
Most times some parents even end up getting anxiety disorder or clinical depression with these realistic and constant worries. Their day begins and ends with these uncertain chain of thoughts. Some times , a few couples undergo marital discord due to poor coping skill, feelings of guilt, blaming each other, not be able to spend quality time with each other , one of them who has to take a backseat on the workfront, misunderstandings sprouting from being financially dependent on your spouse.
Couples also go through social isolation from their families and friends as their priorities change. These parents start distancing themselves from others due to social stigma of their child’s diagnosis, feeling awkward in social situations due to child’s sensory and behaviour issues, knowing the side effects of disturbing child’s sleep cycle and to avoid socially embarassing questions and looks of other people. This further adds on to the feelings of sadness and loneliness in the parents. In some cases,mothers stop visiting their native place for similar reasons further distancing herself from her own parents and family.
But to help another, one must first be able to take care of his own self. It takes a lot of determination and dedication to be in a good state of mind to help your child. Seeking help for your own self first will empower you to deliver towards your child’s well being. Parental counselling sessions to be equipped to handle your child’s behaviours and further modify them is beneficial. Marital counselling is also helpful for parents to save their marriage . Practising stress management and relaxation techniques will go a long way in the entire family’s well being. Don’t hesitate to ask for help from family members if available. Doing and practising some form of aerobic exercise or yoga will help to release neurotransmitters in the brain to ward off the daily life stress. Finding out time for yourself will rejuvenate you to manage your daily chores and schedule. Planning your finances keeping in mind the long term requirements of child will help to secure his future.
Views of the author are personal and do not necessarily represent the website’s views.
Dr Isha Soni is Senior Occupational Therapist, Co founder and Centre Head, Lexicon Rainbow Therapy and Child Development Centre, Pune.
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The CSR Journal Team