Ty Carter, five, starts to put on his shoes to go out with the family. Then he sees a favourite toy and heads out after it. His mother tells him again to put on his shoes. Then the dog walks past and Ty wants to play. His mother tells him to put on his shoes. Today, he just can’t do it. Yesterday, he could do it. Tomorrow, he might do it with no difficulty.
That’s what everything is like for Ty and will be for everything he tries to learn for the rest of his life. He has Fetal Alcohol Spectrum Disorder caused by his birth mother drinking when she was pregnant with him.
“He’s a lovable little boy. He’s a great kid, always busy and eager to please but it can be frustrating for him and for caregivers and siblings. Sometimes he just can’t remember. There is short-term memory loss,” said Angeline Carter, who with her husband, Joe, adopted Ty when he was three. He’s the youngest of seven adopted children from five to 17. The Lumby couple also has three adult children.
“Ty is looking forward to kindergarten. He loved pre-school. He liked the structure of it. Structure is very important for FASD children and they find transitions difficult. We also have to have routine at home,” said Carter.
She is hoping to get his formal assessment completed before he starts school because having a definitive diagnosis of FASD will make it easier for Ty to get the help he needs in school. The diagnosis is free for people up to age 19 but adults can sometimes get benefits with a diagnosis. However, adults must pay $5,200 for a diagnosis, a deterrent for most people with FASD who may not be able to keep a job. People with FASD do not usually have an IQ of less then 70 so they are not eligible for the same services as people who are mentally challenged.
While there are a variety of services available for children with FASD and their families, adults without supportive families can find themselves unemployed, homeless or with mental illness.
“The only cause of FASD is the mother drinking when she is pregnant. When and how much she drinks makes the difference to how the child will be affected, physically or with brain damage. FASD is totally preventable. Women who are planning to get pregnant or are pregnant, should not drink alcohol at all. There is no safe amount to drink,” said Lorraine Donald, FASD and CCY (Complex Children and Youth) key worker at NONA.
The mother’s drug use also affects the child in the womb. There is no information available about how the father’s alcohol or drug use before conception affects a child.
A diagnosis usually starts with the family doctor, then an assessment by a pediatrician. There are certain characteristic facial changes, with most of the behaviour issues being due to brain damage. Psychologists and speech therapists also help with diagnosis, which is made more difficult if it is not known if the mother drank alcohol during pregnancy or if she denies drinking if she did.
Children who have FASD are sometimes small for their age and their unsettled behaviour may seem more acceptable while they are younger.
“Ty has limited motor skills so it will be difficult for him to learn to write and read but he can follow two-step instructions. The speech therapist has worked miracles. We can understand everything he says now. When we ask him what he is thinking about, he always says food and video games. He is impulsive and doesn’t understand consequences,” said Carter.
Donald explained that children with FASD will often take on the role of the comic as they get older.
“It is sometimes too hard to stop and think and understand what is going on, so they respond by acting silly and distracting attention from what is going on,” she said.
“They can also be very good at story telling, even believing their stories themselves.”
Parents have to be thinking all the time.
“There’s a lot of second guessing,” said Carter. “As I meet more FASD teens and young adults, I see that they have difficulty managing their time and money and can be easily led into things that get them into trouble.”
Children who are born to parents who themselves have FASD may not get any help because the parents do not see the need for it. Teen girls with FASD sometimes have children with FASD and their foster families find themselves caring for the teens and the babies.
Carter said that she and her husband have found the area to very good with awareness, education and services for families with children with FASD. They are confident that with the right supports, Ty will be able to live a good life to the best of his abilities.
“We are talking about adopting again. We do it because we love to. It’s really rewarding,” she said.
Friday is International FASD Awareness Day which will be marked with the FASD Awareness Walk starting at noon at the NONA Child Development Centre (2802-34 St.) and ending at The First Nations Friendship Centre (2902-29 Ave). Lunch (by donation) will be served at the centre from noon until 1:30 p.m. For more information, call Donald at 250-549-1281.
