Different, but more than able

Paul Pierre and his son Jo in a session at Therapy Works. Photography by Mark Lyndersay.

Originally published in the Trinidad Express , February 19, 2018

The sound of pain which echoed in the small space we were allowed to dwell and the smell of industrial disinfectant caused my heart to race. In my mind I wished for a quick delivery, a healthy baby and a strong and happy mom. That waiting time travelled over 35 minutes, then suddenly a blanket of silence covered us as my son was finally unveiled.

His screams filled the delivery room with new sounds. The ripples of his sound calmed my mental and emotional storms because finally my son was awakening to a new reality, a bigger space, a new world to explore.

Then the whispers of the nurses and attending pediatric doctors caused some concern. Jo was different. They were not sure what to tell us, he was beautiful yet he seemed different. I was concerned, angry, disappointed and scared all at the same time. Finally the whispers changed to voiced concerns from the medical staff.

Jo’s attending pediatrician asked us to get him tested as his physical development seemed to indicate that he had Down Syndrome. The thought of what living with Down Syndrome implied, scared me. I was not sure if Jo could have a full normal life nor if we could have a deeper connection or conversations, like I currently have with my older daughter.

Words like mental and physical retardation were new and painful, as my brain scanned the full implications of what this could mean based on my limited understanding of the condition. I started to see him as a drain on his sister’s life and potential. I was now angry, but that beautiful baby sleeping in my arms was innocent.

Ignorance can cause pain, conflict and misunderstanding. Thus the need to understand what his condition was about started a conversation with the hospital staff and whilst I am grateful for their kind words to us, their knowledge of what Down syndrome meant remains in the realm of book theory and that short chapter in some medical course. The senior pediatrician maintained a cold distance and silence.

To move beyond that, we as a family accepted him and started learning what being a child with Down Syndrome meant. I personally needed clarity so research on the internet for and about Down syndrome was done. There was plenty info and plenty reading. At this point I started looking at ways to help our family adjust to Jo.

I tried to understand the challenges that lay ahead for us and looked for ways to help him lead the best quality of life that we could provide. Our personal pediatrician Dr. Bratt was very instrumental in getting us to accept what we needed to do. He provided us with the right kind of advice and support.

Trinidad social and cultural norms can be a hindrance to kids like Jo today. We as parents are called upon to educate our peers, family and communities to make room for kids and people that are differently-abled. At this time our kids are in a difficult fight to get the acceptance required for a healthy normal life.

Our schools don’t have the necessary resources both physical and emotional to deal with differently-abled children. The needed teaching style and support are just not there nor is it deemed important. Thankfully there exists a small but growing number of professional Occupational and Speech therapists that are doing their best to help.

These professionals aid parents like us try to provide the fundamentals of communication and physical skills to our kids. Their wealth of training has given Jo the tools to communicate, improve his motor skills and self-confidence. Today at three Jo has developed the ability to be as independent as any child within his age group.

While he still has some ways to go, he is able to communicate well enough to ensure his will, wants and desires are known to us and those that care for him in our absence.

My experience has been one of growth and understanding. While my previous preference was not for a child with Down Syndrome, I am happy and honored to be the father of Jo, his warmth and love is just unbelievable. I can no longer think of a time before him nor a world in which he does not exist.

He has shown me time and time again that there is no limit to what determination can do, never allowing for anyone’s preconceived notions of what they think he can and cannot do. Thanks Jo for all the wonderful moments thus far and I am looking forward to many more. I love you son.

The production of the Lions segment of the Lioness Project series, highlighting the experiences of ten men in the disability field, is supported by the Cause an Effect Organisation, the Massy Foundation, Therapy Works and A Very Special Disabilities Forum.