Double the challenge, doubly special

Jacqueline Scott-O’Brien photographed at her home in Four Roads, Diego Martin. Make-up by Shenelle Escayg, photography by Mark Lyndersay.

Originally published in Express Woman, November 20, 2016

My name is Jacqueline and I am the mother of twins with special needs, Keegan and Cassie, who are now about to turn 24.

My children ask for and need very little to keep them happy. They are loved and continue to teach us all that life is not only about going to University or material success. It is about inclusion, love and deepening our understanding of what it means to belong to the human race. We are all special. We all deserve love and respect. The more aware we become, the more we look inside, the closer we are to each other and to the Divine that created us.

I remember the day the doctor told me I was having twins. I wept! I was already fearful about my ability to take care of one baby, far more two. I didn’t have that natural maternal instinct and had never changed a pamper!

When Cassie and Keegan were born, I fell in love instantly. The first couple of months were a blur of feeding, changing diapers and not sleeping. While challenging, they were beautiful days. The days started turning into months and my children were not meeting their milestones. I worried.

I read books about twins, I visited many doctors and the consensus was generally the same. Twins sometimes take longer to reach those oh-so-talked about milestones of turning over, sitting up, cooing and holding up the head. However I knew in my gut something was not right.

I continued to visit doctors and specialists. The most widely respected Pediatric Specialist in the Caribbean at the time, wrote my gynecologist stating that I was an over anxious mother who did not properly know how to stimulate her babies and that they were just fine. I continued to worry.

We travelled to Miami to conduct tests on our twins. Developmentally delayed, Cerebral Palsy…test after test after test all came to naught and we ended up with a diagnosis that meant nothing really. I remember the day before we left Miami a well-meaning Doctor took me aside and said, “You have to realize as their mother, everything rests on you.”

“You are not allowed to fall apart. For the sake of your children and your marriage, you must never fall apart.”

Tough words for a young mother to absorb and internalise, especially when you are dealing with a host of emotions that you don’t know how to process. It was crazy!

I went through periods of depression, constantly feeling that I was not up to the task at hand, fearing I was not stimulating my children enough. At times I hated myself, I had a helper, I had a husband who provided for us.

Thanks to our helpers Valerie Pierre who saved my life and was like a second mother to my children; I do not know what I would have done without her, and to Gillian Jules who love and care for our children with a selfless heart.

I was obviously just spoilt and selfish, which would propel me deeper under the covers in the afternoon or into a flurry of helping others who I felt had a much better reason to complain or voice fear than I did, because they were poor.

Morning would come and the feeding, bathing, getting to school, traffic…I felt so tired all the time. I felt guilty that I wasn’t doing my life better, wasn’t cheery and ready to entertain them when they came from school. I would lock my door and leave them to Valerie’s care.

I wanted to do something. Something to make it better for Cassie and Keegan and for other children with special needs. I enquired into projects abroad, looked at prototypes of family-type homes, to see if I could start something up in Trinidad, a place that my children could go, be with others with special needs but where they could be stimulated for more hours in the day, where they could learn to do more for themselves and so build self confidence and feel proud…

Life and its challenges took its toll and I had to accept the reality. I simply could not take care of them both, even with a helper anymore. I was worn out.
My marriage eventually fell apart and we separated. Cassie and Keegan were 16.

We were all at a family gathering in the US when a guest said to me that he didn’t understand why children like Cassie and Keegan should be allowed to live. He felt that they were a huge burden on society, contributed nothing, will never attend University and that if he had a child with special needs he would “put it down at birth.”

Whenever I repeat this story people are horrified and ask me how I reacted. I always say the same thing. This gentleman did not say these words to be unkind, he truly believed what he was saying. I have come to realize over the years, that even though people do not say it, they do feel this way. They feel that persons with special needs contribute nothing and only cast a burden all round. Through the years with my children, I have come to see how untrue this is.

My children change lives, upset apple carts, force people to face themselves, they engender kindness and beauty. They ARE special, not because of what they cannot do but what they do every day, giving love unconditionally, never seeing race, gender, class or religion. Smiling and hugging everyone they meet, they can light up an entire country with their specialness. If only the whole country would open their eyes and hearts.

The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum.