The past year and a half has been challenging for so many of us. One of the biggest challenges has been a deep sense of isolation. I’ve heard that from medical workers and other front-line workers, like clerks and cashiers who may be surrounded by co-workers and patients/customers but can’t physically interact or even get too close with most of them. I’ve also heard that from scores of people who experience isolation because they spend almost every minute inside the same four walls of their homes. These include senior citizens who are living alone and are longing for human contact, students who are in virtual classes but longing for a physical game of football or badminton with friends, and parents who are busier than ever trying to juggle work, home, and every demand in-between, but are less able to find a moment to be at peace with their own thoughts and emotions.
There’s another group in the mix, one that some people refer to as an invisible population, and those are our special needs children and families. Many of these people struggled with isolation day in and day out before the pandemic and have continued to deal with that in the past 18 months. In speaking with special needs parents, a group to which I belong, I’ve come to understand that although almost every special needs parent I know has experienced a deep sense of isolation, it is one that few special needs parents speak about. Why? Perhaps because when we’re busy seeing to all the demands in a life that can be overwhelming, we don’t find time to talk about our emotions and frustrations. Perhaps because we need to project an image of strength and competence and admitting our pain goes counter to that image. Or, perhaps because we fear that by opening up about our lived experiences and our struggles we will somehow be betraying our beloved special needs child, as though talking about challenges we face can ever indicate that we are resentful or complaining about our child.
Earlier this year, I started receiving messages from other special needs parents in response to writing and speaking about our special needs family’s journey and some of the techniques we can use to help us shift some painful parts and claim more joy and fulfillment. They’ve said how much relief they experience just because they feel that they are being seen and validated. In the beginning (when I started to write and speak about our experiences, failing, fears, hopes, guilt, longings, and more) I was filled with so much fear, myself, of being harshly judged and vilified. But what I eventually realised was that I was being cut apart from the inside out, because I had been bottling up everything I had been experiencing in the almost 10 years since my daughter was brain-injured and bedridden, and honest expression and daring to reach out to other special needs families and allies was necessary to support my own family and others as well.
Isolation of special needs families happens for a myriad of reasons. These include, but are not limited to, the possible hyperactive senses or compromised immune system of our special needs child so that we must reduce exposure to others, the physical difficulty of moving our child around, the unavailability of facilities to care for our child’s needs (such as diaper changing for my 9-year-old girl), tight finances which reduce possibilities to a bare minimum (many have opened up about no financial freedom to go on a vacation or a date as all they have must go toward household expenses, medical/surgical and therapy appointments, medicine, and equipment to meet their growing child’s needs), and especially the loss of most friends and family members from their circle.
I’ve spoken to parents who have shared about family get-togethers where their family was the only one not invited, of hearing about a wedding a month later when someone mentioned the fun they had in error, and then realising they had been purposely left out because their child would make others uncomfortable. After one of my aunts read my book, she called me and said sorry she has never visited. She explained that she did not know what to say to me and so she stayed away. I think that’s what happened to most of my friends and family because, in my family’s toughest time, when my daughter had lost all of her senses and her ability to suck and swallow and was in a semi-coma, most of the people I thought would be there to hold us up just never showed up. They never visited or made a phone call. And sometimes they would visit people or restaurants just a few corners away from my home but would be too busy to come our way.
This is uncomfortable content to air, but it is absolutely essential to air it. Special needs families live in a high-pressure situations. The stress does not come and go; it is a life situation. Parents are wondering about what’s going to happen to their child after they pass away, they’re wondering how to earn enough money to save for a home to look after their child after that inevitable day comes. They’re concerned about siblings who will never be free-to-play young adults because they will inherit caregiver responsibilities. They’re tired of walking into a clinic and hearing others in the waiting room pronounce what they are doing wrong and why they are not good parents. They’re sad about people who don’t fight hard enough for their child in the medical/therapy field, people who tell them (as I have been told) that they are being irresponsible to ever hope for any recovery of their child. They’re longing to be seen, accepted, embraced, supported – as every human does.
If you have a special needs family in your family, or on your street, or in your community it does not take much to give them a little love. Please be a part of the change by learning more about special needs children and special needs families. A note in their mailbox, a phone call, a smile and chat across the fence, even remembering the name of their special needs child can warm their hearts for days.
Dr. Marcia Nathai-Balkissoon is a Lecturer of Business Strategy and Policy at the University of the West Indies. Her daughter, Emma, was brain injured at age 8 months due to a doctor’s mistake, leaving her severely brain-injured and bedridden with the prognosis of a vegetative state for life. Marcia works with other special needs parents to help them shift from overwhelm into more joy and fulfillment by coping better in all aspects of their lives.
Marcia’s book, Lighting the Path: Leaning into a Hopeful Future as a Special Needs Parent is available at https://www.amazon.com/gp/product/B0949N89C4 and sign up for her newsletter to get access to 2 free chapters.
To receive support resources for overextended special needs parents, subscribe to the MarciaNB YouTube channel, and apply to join the free community, Special Needs Parents Claiming Joy and Fulfillment here: www.facebook.co/groups/joyandfulfillment.
Check out more ways to access resources like the newsletter and follow Marcia on social media at https://www.marcianb.com/biolink.