HAVE YOU EVER LOVED SOMEONE so much that if they hurt, you hurt? That unconditional love, that depth of emotion emanates from Tracey Knight-Lloyd when she speaks about her son, Ade, who was diagnosed with autism when he was a toddler.
As Barbados joins the world this month in trying to create a greater awareness of autism, she shared her story with EASY magazine of discovery and coping with her son’s diagnosis.
“I first had an inkling . . . you can call it a mother’s intuition that something was different about Ade. I hadn’t been around any other children or babies but when I read the books he wasn’t meeting his milestones in terms of talking and walking.
“But he was the perfect baby. He had lots of toys but he really wasn’t into them. He preferred to play with egg cups and he preferred to spin those cups; anything that he could spin he would. The first thing that really threw me off was before mealtime he would get very excited and he would flap and that day, when I saw the flapping I knew it was a sign of something, an unusual behaviour,” she reflected.
During the interview in her Haggatt Hall, St Michael office, the vice president of customer experience at Sagicor General Insurance said a visit by a cousin’s son whom she said trashed the room, brought home to her that her baby boy was not actively engaging in his environment.
“The first time I got a diagnosis Ade was 17 months and at that time I enrolled him in a special needs day nursery. Eventually everybody came on board and realised that ‘yes, Ade is autistic’ and it is something that we’re going to have to deal with,” she said.
After the diagnosis Tracey said she stayed home from work the next day and cried. Then she researched autism online, read some depressing information and ordered books.
“Luckily for Ade and for me I was never in denial. I might procrastinate in other areas of my life but that’s one of the areas I’m proud of. When I got the diagnosis I got moving and I got things done.”
The African proverb – it takes a village to raise a child – applies to her adorable fashion-forward son.
“Being a mother of a child with autism is not easy and I’m not saying that to garner any sympathy or anything. It is not easy. It is tough but it is doable. You have to have a real family structure that includes friends around you. You really can’t do it alone. I tell people a village helps me raise Ade.
“They’re so many people involved in Ade’s life because I really can’t do it alone with a demanding job. I just can’t. I have the support of my mum, my dad, my sister and brother-in-law, my cousins, my aunts, my uncles, my friends. He has amazing therapists. His bus shuttle driver has to be on board, his barber Jerry. I don’t think people understand how wide the network is . . . . You meet a lot of great people along the way and I have been blessed to have a lot of good people in Ade’s journey.”
Tracey believes that God prepares “us for what we’re going to get in life”. In her early days working at Life of Barbados, the founder Cecil deCaires made substantial donations to every disabled charity. She was responsible for overseeing those donations before Ade came along.
“So when this happened to me I wasn’t starting from scratch. I had enough background to know this is what this journey is likely to be. This is who I can reach out to, but still it is tough,” Tracey said.
“Sometimes children with autism change . . . they are picky eaters and sometimes you do get to the point where you are overwhelmed because you don’t know what is happening next. You may see a behaviour and wonder did he eat something that he shouldn’t have? Is this an emotional reaction? You have to eliminate and figure out.
“Some children have issues with speech. Ade didn’t speak until he was five, and that is a battle in itself. Sometimes you would go out and people would be saying ‘hello’ . . . . Now when they say hello I say “You wait”. He’s going to respond because they take longer to process information, then he would respond. Autism is a complex thing to live with,” she said.
Tracey is driven in her quest for greater awareness and the need for early intervention.
“Had I not been persistent, had I not been able to be surrounded by the right professionals I could have easily fallen into the trap of saying he’ll grow out of it. I could have gone into denial which is a state that a lot of parents find themselves in and the early therapies and the early treatments Ade would have needed, he would have missed out on.”
Her hopes for Ade are the same as any parent.
“That he will grow and he will find work that he loves and he enjoys; that he will have a family . . . ,” Tracey said, smiling confidently. (Green Bananas Media)