Living with autism in TT

DR RADICA MAHASE

MEET Kai Vance. He is seven years old. He was diagnosed with autism when he was three years old. Vance lives in Fullerton Village, Cedros, with his mother, elder brother and sister and extended family. Like most kids his age, Vance loves technology – tablets, smart phones, smart TV and computers. He also loves construction vehicles and he knows all the different types and their uses.

He could tell you about natural disasters – tornadoes, hurricanes, earthquakes and tsunamis. He knows all the bridges around the world and he is fascinated by the Titanic ship. He loves to research ships that have sunk and he does all the research on his own on his tablet.

In addition to autism, Vance was diagnosed with development delay, swallowing incoordination, chronic constipation and speech and language delay. He has a feeding tube which has only brought him pain and discomfort since it was inserted. The doctor ordered the feeding tube for a balanced diet as well as a high-fibre diet to deal with the chronic constipation and general nutrition for his development. However, the tube keeps coming out and at his age it’s very difficult for him to manage it.

At his young age he has spent so much time in and out of the hospital. He goes to clinic in Mt Hope, surgical clinic in San Fernando, developmental clinic in Point Fortin and dietician clinic in the Cedros Health Centre. He can't bear the pain and cries all the time. He is traumatised by being in the hospital.

In fact, he breaks down every time he has to be admitted to the hospital. He hates the manual evacuation and wash outs. His family is convinced that the feeding tube has done more harm than good and they have been trying to raise funds to take him abroad for another opinion/treatment.

Presently, Vance is not receiving a formal education. He was enrolled in a primary school in his village and he attended for a few days for a couple of hours so that he would get acquainted with a school environment and being around children his age. His mom, Summer Gajadhar said, “He was a bit excited. He traced for his teacher and he knew certain charts.

However, another student pulled on his feeding tube so he was hospitalised for 13 days after. After that he was hospitalised again, for chronic constipation where he had to be sedated to do manual evacuation and wash outs. So I never took him back to school.”

His mother wants him to continue school but she was told that she had to get a teaching aide. She said, “I got a letter from the developmental doctor and dropped it in the school but it wasn’t sent to the relevant persons. I was told that the government don't hire people like those again, meaning the aide.

I got another letter which I took to the Ministry of Education in San Fernando. Student Support Services called and I am hoping to meet with them soon to see what can be arranged for Kai.”

Raising a child with autism and medical complications is very difficult for Gajadhar as well as Vance’s siblings and extended family. His mother noted that it is getting harder to calm him down. The feeding tube is painful and uncomfortable and it has reached the point where he sits up and sleep and he has difficulties breathing.

Every time there is blood in his stool she has to rush him to the hospital. The doctor said that the amount of paraffin oil that he has been prescribed could make him aspirate.

Financially, it is very rough for the single mother who had to give up working so she can care for him. His daily needs go beyond food and clothing – feeding tubes, syringes. Sterilise gauze, micropore plaster, PediaSure as well as medication such cost a lot of money. The grant that she receives from the Ministry of Social Development and Family Services is just not close enough to help in any significant way.

Emotionally is it difficult for the entire family – the constant trips to the hospitals and the emotional trauma of just seeing your child in pain, the struggles to make his life a better one with limited resources. Gajadhar said that she’s exhausted and depressed and just wants a better life for her son. Anyone interested in helping Vance can contact Gajadhar at 794-5070 or 289-5299.

Dr Radica Mahase is founder/director, Support Autism T&T