“For me, it’s good to know how other people interact with these kids and learn from them – sharing our stories makes me feel like I’m not the only one feeling this way.”
Alex DiCurzio is a 20-year-old second year education student at the University of Winnipeg. She spends most of her day in a classroom, as a student or teacher, and at night teaches dance classes at local studio, Monica’s Danz Gym.
The rest of her time is spent working with a 14-year-old teenager who has Fetal Alcohol Syndrome (FAS) and Attention Deficit Hyperactivity Disorder (ADHD). Three months ago DiCurzio met the youth, who cannot be named for privacy reasons, as part of her work with a local organization dedicated to providing opportunities for those living with disabilities.
DiCurzio is new to the respite community and finds common ground with others during the story sharing meetings her organization hosts each month.
Her primary task is to act as a parental figure to the teen who lives alone with rotating caregivers throughout the day.
“I go by and cook for him and he has his own chores like doing laundry,” explained DiCurzio, who also reminds the youth when to shower, dress and to not put on already-worn clothes.
“He is very good with matching – some people living with FAS don’t know what to wear in certain weather, like wearing shorts in winter,” said DiCurzio, who spends weekend days and some weeknights providing care. “But he always knows what to wear.”
FAS is part of Fetal Alcohol Spectrum Disorder (FASD) and is caused by the consumption of alcohol during pregnancy. Children born with FAS can have any range of mental or physical deficiencies that will be with them their whole life.
DiCurzio said at first she didn’t know much about FAS and was unsure when she started her new line of work.
“At first I was really nervous because it was one-on-one and I didn’t know what to expect,” DiCurzio said. “But now I like it because I know him, I know what he likes and doesn’t like – we now go on car rides and he plugs in his iPod so we can listen to his music.”
The two have come to understand each other, and DiCurzio said her favourite part of the budding relationship is that “he opens up to me about absolutely everything.”
Recently, the two enjoyed the warm weather at the Forks, an experience that stands out fondly for DiCurzio.
“We got mini donuts and then went to the bridge and got burgers at the Salisbury House,” she said.
DiCurzio’s time with the youth has propelled her to research the needs of students living with FAS as part of her studies as an early years’ educator. She said the most important thing she can do is teach others – both students and teachers – how to help people affected by FAS; a challenge when paired with traditional teaching methods.
“Even when [people living with FAS] do understand you, and learn something new, the next day they might not remember and act as though they never learned it,” said DiCurzio, who experiences this sometimes when she visits with them. “It can be hard because you say, ‘but you learned this yesterday’ and they get agitated.”
DiCurzio said the most important role she has is to facilitate inclusion. – making sure the person feels “more positive” about himself and empowering him to be part of the community.
“You have to get to know them as an individual and not just look at the disability, but rather how you can help them as a person,” she said.
Sharing stories is powerful. Write about someone or something that moves you to make a difference in the community.