Raising a Daniel - Trudy-Ann's story about her 'special' needs child
Erica Virtue, Senior Gleaner Writer
Trudy-Ann Young has welcomed the Disabilities Act of 2014, hailing it as an important step in the right direction for any country that claims to be progressive.
As mother to a child with special needs, she is well aware of the needs of those who will be impacted by the legislation.
Daniel is six years old and a genius at disassembling and reassembling electronic gadgets, breaking electronic codes and is hooked on computer games. He taught himself to swim and conquers the swimming pool like a general in the army.
He is autistic, with attention deficit hyperactivity disorder (ADHD) and, in basic activities, is unable to function at his chronological age.
Arriving after eight prior miscarriages and with her having only one functioning ovary as a result of an ectopic pregnancy, Trudy-Ann says Daniel has brought immense joy to her life.
She considers it a blessing to be his mother despite the daily challenges.
She was in no rush to know the sex of the child she was carrying, nor did she care. She was more concerned about carrying the pregnancy to term. But when her water broke at four months she lost so much amniotic fluid that doctors advised her to terminate the pregnancy.
"They were sure the level of damage would have been too great for him to survive," she recalled.
She shot down the suggestion immediately, telling her caregivers 'no way'.
Trudy-Ann would spend the next two months in a hospital bed at Andrews Memorial in St Andrew. It was while she was there that she was "instructed" to name her child 'Daniel'.
"A woman came to pray for the other patient with whom I shared the room. During the prayer she turned to me and said 'you are carrying a son, and you should name him Daniel because he is going to have to fight for his life'," she recounted.
At that time, she did not know the sex of the child she was carrying. The fetus was too small and too young for its gender to be discerned.
Looking back to that day in the hospital, she said: "If ever there was a revelation, that was it."
Trudy-Ann added: "All the medical experts said he would be a vegetable, considering that I lost nearly all of the amniotic fluid at four months."
She believes Daniel's fight began in utero.
"This little boy clung to the little fluid that was left, and when doctors delivered him at six months he was born with collapsed lungs, pneumonia, and he actually died for 45 minutes. His haemoglobin went from 11 to five for no apparent reason and he was not bleeding from anywhere," she recalled.
She said doctors attempted to resuscitate him for what seemed like an eternity and, when there was no response, "one later told me he didn't know how to break the news".
But after one final attempt, the baby responded.
Last week, Trudy-Ann's face was flushed with joy and love as she watched Daniel dart across the living room from the desk he was sitting at, tossing cushions from one sofa to the floor as he landed in the corner of another sofa.
When The Sunday Gleaner visited their home, Daniel was focused on the computer game he was playing.
Not even a hand blocking the computer screen stopped him.
"He continues to grow and improve in every aspect of his life. He dresses himself and takes great pride in doing so. He likes to go out. He feeds himself and cleans up after. He is able to help himself in the kitchen and will ask for help if he needs to, but he is unwilling to share what he makes," the child's mother said proudly.
With or without the hot climes, "Daniel likes juice, lots of it, ice cream and warm milk".
When they moved to the apartment two years ago after he turned four, "Daniel knew nothing about swimming".
Said Trudy-Ann: "He was unable to even help himself in the water. Now he is swimming the length of the pool with just one hand. He also dives to the bottom, which is nine and a half feet deep."
A special bond with Dad
While Trudy-Ann spends more time with him and his sister, Daniel also has a special bond with his dad, Donovan.
"He is a replica of his dad, and from the moment daddy put his little finger in the palm of his hand, that bond has not been broken," she said.
Donovan works islandwide but makes his way to Kingston on weekends to be with his family. On many of those visits he would watch Daniel sleep for hours.
But with all that is right in their lives, Trudy-Ann has one regret.
She wishes there were more educational institutions with a strong, vibrant curriculum in Jamaica for children like Daniel.
"I am sure there are scores of other persons with special-needs children and who care about them passionately.
"There were no institutions in Mandeville to take him, and that's why we moved to Kingston. Not everyone can afford that," she bemoaned.
- Institutions providing for special-needs children
Erica Virtue, Senior Gleaner Writer
Several public and private educational institutions provide for special-needs children in Jamaica.
Early this year, the Govern-ment announced that seven special-needs institutions would receive educational equipment valued at $33 million under the e-Learning High School Project in the Ministry of Science, Technology, Energy and Mining.
The schools listed were the Salvation Army School for the Blind; Lister Mair Gilby School for the Deaf; Woodlawn Special School; Randolph Lopez Special School; Carberry Court Special School; Llandilo Special School: and the Danny Williams School for the Deaf.
The benefit is a joint venture and will be carried out in collaboration with the University of the West Indies Centre for Disability Studies.
The e-Learning High School Project includes 203 educational institutions - 166 public high schools, six public special schools, 10 teachers' colleges, five community colleges, and 16 independent high schools.
The contract will allow for the provision of specialised software for the visually impaired; Braille machines; special Braille keyboards; equipment and software for the deaf, among others.
Telecoms provider Digicel has also indicated that five special-needs institutions would be added to the list of schools already benefiting from a $100-million Digicel Foundation disbursement for special-needs projects.
The schools include STEP (School for Therapy Education and Parenting of children with multiple disabilities) Centre, Naz Children's Centre, Genesis Academy, Early Stimulation Plus, and Liberty Academy.
Concerns have been raised, however, that while teachers in the privately run institutions are trained, they are not trained in special education.