Originally published in the Trinidad Express , March 05, 2018
I got into the business of special children almost by mistake. In 1975 I was in the middle of paediatric training in Baltimore, Maryland. As one of the paediatric residents at Baltimore City Hospitals, I had to periodically cover the Maryland State Hospital that took care of indigent children with disabilities. It was a tough assignment and no one enjoyed it.
Most of the children had multiple physical problems or had been abandoned and there was little money available to care for them. The hospital itself had been built around the turn of the century, the physical structure was falling down, it was a dark, gloomy and depressing place.
One of the children was a fat, grotesquely ugly child who seemed to live in a wheelchair. She was paralyzed from the waist down because of spina bifida which had also resulted in hydrocephalus, so you had a hugely obese 10 year old with this enormous head which she had difficulty in supporting, had chronic kidney disease, who lived with a urinary catheter in place and always smelt of faeces. She was shy and spoke little and it was assumed she was “slow”.
Apart from the necessary, I paid her little attention until one day I noticed her drawing, asked to see it and was shocked to discover the most exquisite of drawings of a young girl in a wheelchair. “Yes Doc,” a nurse said, “she draws well. Look, we all have portraits she’s done of us.”
So it was. So I too had my portrait done, began to bring sweets for her at each visit and then, like all the residents after a year, left. What happened to her? Dunno.
But I did learn to look a little beyond the physical facade to trust patients and their hidden gifts and what they can do if given the opportunity.
Back home in T&T, office at home, busy, and in walked a young couple with their six year old son, brain damaged from birth, unable to walk, talk or feed himself. The mother said, “the doctors say he’ll never be able to do anything for himself and we should put him in a home but he is my son and I am not going to do that. Is there any chance he will ever be able to care for himself?”
The child gave me the answer by rolling over and struggling to sit up by himself and looking at me with such assurance that I blurted out, yes, he’ll be able to walk whereupon they left and returned a year later, child walking. “What did you do? Who helped?” “Nobody said the mother.” “Well maybe Mrs. So and So,” said the father, “she encouraged us but is really you. You gave us strength to believe we could help him.”
So I learned to trust mothers and the power of a doctor’s words and expressions.
So if it’s one thing I want parents of children with disabilities or special children to know, is that it not easy, you on your own, nobody is going to help you with your “retarded” popo or your “handicapped” baby.
Don’t look to government or private enterprise or teachers or the medical profession for help. Above all, you cannot afford to believe in politicians who will ride you and your child into oblivion and when they get into power forget you so quickly your head will spin.
You have to believe in yourself or you are not going to be able to help your child. You cannot afford to give up because your child will suffer. You have to look around for like-minded people, form a group and keep joining up with other like-minded groups to put pressure on the people who run T&T to do the right thing. They not going to so it by themselves.
Like all of us they run from problems like your child. You, who live with those problems, hour by hour, day by day, month by month, no time for yourself, no progress for your child until the years have suddenly gone by and you are old and your child is still no better, you have to help your child.
Trust yourself. You can help your child. It’s going to be hard work. You are going to despair. But your child, like Rosie in the wheelchair above and Danny struggling to sit up, has hidden strengths. It is for you to go on the journey to discover those gifts and bring them out.
In so doing you will also discover things about yourself that you never knew you had. It’s going to be exhausting work but exciting. To see how far you and your child can reach. That may be something as distant as walking or talking or simply chewing and swallowing but whatever it is, it will be because of you together.
Because never forget, in a third class country, is you and your child to ketch!
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 and A Very Special Disabilities Forum.