'My kids have gone through hell and back'

The Ottawa Citizen 

Sunday, August 06, 2006

Progress around awareness of FASD may be growing very slowly but a few encouraging stories are starting to emerge. Carol (not her real name) and her family are a good example. Carol and her husband are currently fostering four FASD-affected siblings and have just begun to foster the siblings' natural cousin. Carol has two natural children but they were no longer living at home when she started fostering.

"When I got the kids, I had no idea they were FASD-affected. It wasn't obvious to look at them and I had never heard of FAS or FAE.

"I took five kids at once. All are females, except for the youngest. At the time, they were 14, 13, 9, 7 and 4. I wanted them to stay together so I took three children at first and took two more within the next four months.

"I knew before they came that they were all mentally challenged. But after they were with us for awhile, I started to think there was something more going on.

"There were things that they did that seemed really odd. For example, they didn't make a mess. They would play with only one thing at a time.

"And they didn't 'see' things that were in cupboards the way the rest of us do. They would be with us putting away the groceries in the cupboards, and they could see that the groceries and the snacks were going into the cupboards. It struck me that they were the only kids I knew who never asked for snacks. On the other hand, if I were eating cookies, then they would ask for cookies. As far as they were concerned, once the cupboard doors were closed, the snacks were gone -- or once the pop was in the fridge and the door was closed, it didn't exist.

"They also don't have normal social fears. If we were playing in a park, and one had to go to the bathroom, the child would think nothing of walking up to a house, knocking on the door and asking to use the bathroom.

"The concept of ownership is also totally alien. If an object was there, it was 'mine.' It wasn't stealing -- it was just if it's there, it's mine.

"I couldn't figure out what was wrong with them. I had been around other children that are mentally challenged, and I was reasonably knowledgeable about the types and degrees of different disabilities. But this was a mystery. I kept asking people what they thought was wrong. Everyone said they just seemed weird."

Carol took the children to her family doctor, who didn't have any answers. In school, the children were experiencing all kinds of problems and again, the teachers couldn't pinpoint why.

"None of the kids were working at their appropriate grade levels, and everyone said that, because they are mentally challenged, I shouldn't expect them to ever do anything. They weren't even teaching the seven-year old. She pretty much sat in a corner and did nothing. And Jose (not her real name), the one who is going to college this fall, was constantly being taken out of class for all kinds of things."

It was a friend visiting from Manitoba who finally directed Carol to some answers. A casual comment from her friend, a teacher -- "My goodness, the middle one almost looks like she is FAS. She kind of has the features" -- sent Carol to the Internet in search of information.

The FASD features weren't prominent but a website on FASD confirmed what her friend had observed. "There was a questionnaire with 25 questions and I answered yes to more than 22 every time for all five kids," says Carol.

"This just blew me away. I was really excited -- not that the kids are fetal alcohol-affected, of course -- but that I had finally figured out what was wrong."

The information triggered an action plan that moved Carol's foster children into a new world of possibilities. She began working with the teachers. "I knew these children could be taught, we just had to find the right way." At this point, the seven-year-old could neither read or write, or manage even the most basic math.

"Jose was in Grade 5 but she wasn't working anywhere near that level. We wanted to keep her back in Grade 5 but she was really upset at repeating the grade. She had always been in the same school, even before she came to live with us, and the other kids were making fun of her because of things that had happened in her previous home. We switched schools, changed her name and adapted her programming to fit her needs and abilities."

Jose also told everyone she was adopted when she changed schools.

"We looked at adoption. We really would have loved to have adopted all of the kids but it just wasn't financially feasible." So Carol and her husband proposed giving the children long-term foster care.

"As far as we're concerned they are our kids. We make all of the major decisions in their lives, and the government helps with the financial end of it. We wouldn't be receiving financial assistance if they were adopted."

Carol credits two teachers at Jose's last primary school for kick-starting her success. They took Jose under their wings and now, at 20, Jose is doing well at community college.

"Because she can only concentrate on one thing at a time, Jose made a choice not to have much of a social life," says Carol. "She realizes it takes all of her attention to do one thing well and that friends might interfere with her schooling."

Laura (not her real name), the oldest of Carol's fostered children, is at the other end of the spectrum. But Carol thinks that Laura is also a success story.

"Laura's been working in a local fast-food restaurant for over three years and she is their longest serving employee. It wasn't always a bed of roses -- I had to advocate regularly on her behalf when she first started working. But she's proven her dependability and she just got a promotion."

Laura no longer lives with her parents and is beginning to experience problems keeping organized.

Then there is Charlie (not his real name).

"He has a big, big heart but he is also one of the most annoying people you'll ever meet," Carol says. "You have to love Charlie -- he's a hard worker, and he'd do anything for anyone -- but he's in your face all the time. He'll ask the same question 50 times over because he forgets the answer.

"He also has oppositional defiant disorder, so it's always 'no' when you ask him to do something. On the other hand, his persistence pays off. For Charlie a rule is a rule, period -- that is until someone manages to convince him the rule is stupid, which happens occasionally."

Carol's realistic attitude extends to the possibility of her foster children marrying and having families of their own. Her frank opinion: "I wouldn't want it for any of them. It's too much responsibility. To be successful, they will always need structure in their lives. If they're on their own, let alone trying to raise kids, there's a good chance they will have a very difficult time keeping their lives organized."

Carol hopes to expand her work with FASD children. "I know how much work and energy it takes to take care of these kids and I also know what incredible humans they are," she says.

"My kids have gone through hell and back -- and we've been able to give them a life and a family and a feeling of self-worth. I want to help other people who are trying to do the same thing."

Carol plans to offer respite care for families with FASD children. She says she knows how much families sometimes need a day, a weekend or a week off. She says she's seen parents split up from the strain . She also plans to offer parenting courses.

"It's important that these children have firm boundaries immediately. It's really hard to start pulling back on the reins later on. And when you do, you're going to face a lot of rebellion."

Source:

http://www.canada.com/ottawacitizen/news/story.html?id=c82316ac-5eb4-4760-babb-daa1ec5ff264

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