When Tasha Chance and Carson Holtz were told as children that they had FASD (fetal alcohol spectrum disorder), they didn’t know what it meant.
What they did know was that they seemed to have more difficulty and need more help to do many things that most other children did and they often felt lonely and misunderstood.
What is known is that FASD is caused only by women drinking alcohol at any stage of pregnancy and that it is an invisible, permanent, brain-based physical disability which changes the brain function of those affected. These changes show up differently in each individual and can result in challenges in thinking processes, responses to stimuli, memory problems, and a wide variation between developmental and chronological age.
“I felt other people didn’t understand. I had few friends at school and I related to adults better,” said Chance, 19. “People don’t understand that because I have FASD I can’t do things. I was told that I would never learn to read and write but my foster mother taught me when I was 13. I like to read and I write poetry and stories and I graduated from high school.”
Holtz, 32, said he also had difficulty making friends as a child but now he is outgoing and has lots of friends.
“I’m a people person and I like to help people as much as I can. I speak at my church and I would like to have a chance to tell people more about what it is like to have FASD. I would like to have a group for people with FASD so we could discuss ways we could help ourselves and each other,” he said.
He also writes poetry and plays the guitar, and Chance plays guitar and sings. He lives on his own and Chance lives in a home share. Both have support from Community Living British Columbia as needed.
“The strength I see in both Carson and Tasha is that they are strong self-advocates. They find ways to make things happen for themselves and they realize that they need help with some things,” said Tamina De Montezuma, facilitator/Personalized Supports Initiative, Community Planning and Development, Community Living British Columbia.
Both Holtz and Chance say that they do not blame their birth mothers because they did not understand that drinking during pregnancy would harm their babies. And both want to do everything they can to make people aware of the risks of drinking while pregnant or planning to become pregnant.
“FASD is completely avoidable if you do not drink while pregnant,” said Holtz.
Chance added that while it is not certain that drug use during pregnancy also causes brain disability, she thinks it could and it is better not to use drugs while pregnant.
“I think it is important to let people know that you have FASD and that you need more patience and time and might do things differently but don’t let it stop you doing things. I used to lean on that, that I couldn’t do things as an excuse, but I can do things, I just need encouragement and support,” she said.
“Because FASD is not visible, sometimes people don’t know that you are disabled and think you are just annoying.”
Both felt they were well supported while growing up and that they continue to get what they need to do their best. They are well aware that many people with FASD are at risk for homelessness or trouble with the legal system because they are not properly diagnosed and do not receive the help they need.
“I do landscaping part time and volunteer at CMHA and at my church. I like to be busy and I am at peace in my church,” said Holtz.
A common problem for people with FASD is impulse control.
“I have really bad impulses. I spend and spend without thinking about the consequence. That gets me in trouble sometimes. I know I have to be really careful with money,” said Chance, who works part time at a restaurant.
“I do find I can control my behaviour if I am patient with myself and take the time to try to figure out ways I can handle things better. I have read a lot about it. I do art and talk to people. Writing helps me express my feelings and I have had some of my poetry published. I like swimming to stay active.”
Holtz said, “When I have an impulse, I act and it gets me in trouble sometimes but I work at it. I write poetry, too. And I do free-style rap at the Talk’n Donkey and some things at The Hub. I play hockey. I like to stay active and not get bored.”
Chance and Holtz will be speaking about living with FASD at FASD Day in Polson Park Sept. 9.
“What I want to say is that no one should drink when they are pregnant. And for people who have FASD that you have to work 10 times harder but things are achievable. Don’t give up. Be strong. You can’t take life for granted. Appreciate life every day.”
Chance’s message is, “These labels are put on you that you can’t do things but if the support is there, it is very possible to succeed in life.”
Everyone is invited to the family-oriented FASD Day activities in Polson Park Sept. 9, starting with a short awareness walk at noon. This will be followed by music from The Shags and Kat, and The Valentines, with lunch and speakers and more music.
“We want people to know that drinking alcohol while pregnant can lead to FASD in the child. It is 100 per cent preventable. It’s a choice,” said De Montezuma.
For more information on support for people with FASD see www.communitylivingbc.ca.