“The special needs community are just asking to be properly recognised, not scorned.”
These are the words of a parent of a special needs child who said it has been a difficult journey for her family to get by every day without being judged from the public.
Marcia Nathai-Balkissoon and her family was thrown into the deep end when her newborn baby Emma was born with a condition called tetralogy of Fallot, which affects blood flow through the heart.
You may say that might not be unusual. But at eight months old, when Emma had corrective heart surgery, she suffered brain damage and was left completely paralysed and in a vegetative state for life.
Nathai-Balkissoon told Sunday Newsday her family was devastated, because not only did they have to deal with an incapacitated child, but she was also jobless at the time.
She said there was just one source of income in her household, which came from her husband, Sean, 48, a secondary school teacher.
Meeting the needs of Emma, now nine years old, and her son, Bryan who is now 14, and basic household expenses was overwhelming, she said.
“The medical bills and supplies, the therapy, the additional special foods and drinks was a lot. And of course, we had to ensure that Bry was also taken care of and not neglected.”
“Doctors advised us to remove Em’s feeding tube and let her go, because life would only get harder for her and the family. We were even called irresponsible for hoping for her recovery.”
Nathai-Balkissoon, 46, an industrial engineer, was eventually employed at UWI as a lecturer, which eased their financial burdens but not their emotional and mental stress.
She explained that having to go various specialist doctors and clinics opened her eyes to the treatment meted out to people with special needs and their families.
Nathai-Balkissoon recalled her visit to a clinic where she saw doctors and staff dismiss a woman who was enquiring about the condition of her son.
“Imagine, the doctors didn’t even have the courtesy to explain to the woman what was actually happening to her child. The woman was informed that the child had a heart condition and needed to visit the facility regularly.
“I was disgusted by this. The woman was unaware of what to do or where to seek assistance. I saw the hopelessness in her eyes.”
Nathai-Balkissoon said she also faced continued discrimination from doctors, medical staff and the public, which prompted her to research ways to deal with special needs children and scenarios.
“Every time I take Emma to a clinic or other appointment, every time I go into an online special needs group, I come across other parents who are facing the onslaught of judgment, fear, declining hope and isolation in their journey with their special needs children.
“I found technical books by professionals, but not personal books by others who had walked the path we would be walking. I so longed for that hand-holding.”
She said this was the catalyst for her to write about her behind-the-scenes experiences of taking care of a special needs child.
So Nathai-Balkisoon has become the author of Lighting the Path: Leaning into a Hopeful Future as a Special Needs Parent. The book details the challenges of caring for a special needs child and offers support to parents.
“The book was written to hold the hand of parents whose children are born with special needs or develop special needs following some traumatic event later on in their childhood. It addresses several of the major concerns and pain points that arise for special needs families.”
She explained that there is a high level of stigma in society against special needs people because others do not fully understand the logistics and the amount of work needed to care for them.
“We are often seen as people who want help, or we want money. It is really hard, especially now that the world is dealing with a global pandemic. People are out of jobs.
"Could you imagine the frustration now being faced by parents and special needs people who are in the lower income brackets?
“There is the fear of being perceived as a complainer or pity-seeker or even as being uncaring of our child. Financial limitations do not allow special needs parents to afford help or time away from their pressure-filled lives.”
Nathai-Balkissoon said her family felt like the situation was a hopeless case at times but having support units, having faith in God and self-care were critical for families in such predicaments.
She said the situation overtime has made them stronger and urged families to harness their willpower to overcome the criticisms.
“Caring for a non-disabled child is stressful and leaches energy and time away from a romantic relationship, so the stress can become super-sized when a child has special needs.
“Parents need to also be reminded of their own dreams and to be encouraged not to give up on their own purpose and calling in life as they seek to meet the important needs of their special needs child.”
Lighting the Path has ten chapters which deal with acknowledging the situation and feelings, coping with the situation, feelings of abandonment and isolation, encouraging and achieving dreams, examining and embracing spirituality, planning and intuiting interventions at home, caring for other children in the home, maintaining love relationships, managing health, financial planning, and resilience.
The book is available on Amazon.com. More information about special needs parenting can be accessed at https://marcianb.com/stories/