Adults with FASD share their stories

Living With FASD

We recently had the chance to meet four remarkable individuals who are attending a special pre-employment and educational upgrading program for adults, prenatally exposed to alcohol. They wanted to share their stories. From their experiences we can learn better ways that communities can nurture and support families living with FASD.

Lucy’s Story: 32 years old, has 3 children, is presently living in a relationship.

Living with FASD takes a whole community to raise a child because they need a lot of tender loving care. They need people that have lots of patience and time. A child in school has a difficult time learning if the teachers don't understand the disability of FASD. A child that lives with FASD may be judged or called names like dumb or stupid.

I never finished my schooling: it was a struggle in school because I didn't understand what I was to do and to found it hard to get things done on time.

Since I've been attending the Focus class I've improved 100% because I have good teachers like Linda and Barb who were there for me when I needed them. I get to work at my own pace in this class.

I have three daughters who are 12, 9 and 6. I've been working as homemaker. Every two weeks I pay bills such as hydro, natural gas, phone, and cable. I went back to school at our local college for about three years, and then I took up traditional life skills such as beading and drum making. Now I'm back in Focus.

Sincerely
Lucille

Val’s Story: 32 years old, has 5 children, is presently living on her own.

I had a difficult life during my younger days, living with my parents when they were alive. They weren't very good memories because they drank lots. I didn't like any of that happening in our home. It was very frightening at times. My sister and I went through lots by ourselves. She took good care of me when I was a little girl.

When we were with my parents they did their best to take care of us. They had there bad days, they drank and took care of us at the same time, but that's probably how they grew up. That cycle has to break and that's what I'm working on. Drinking isn't the answer when you have a problem, it just gets worse.

During my school days, when I was in grade 1-3 and before moving here, I had a hard time. I was put back in grade one, I think, but I always wanted to be with my original class. I was so mad when I was put back. I started crying because I wasn't smart enough to be with them. During math, which I didn't like very much at all, I couldn't do the work well and I wasn't patient at all. I would get frustrated and start to cry. I couldn't concentrate. I just hated math. I still do today but I have to learn to like it to get through in life.

As I got older things seemed to get harder. For instance, things like budgeting and things to do with numbers. Not memorizing numbers, that wasn't really one of my weaknesses. I'm good at memorizing,at least 10-12 numbers and phone numbers.

I volunteer at the daycare for a couple days a week. I've done this for a few months now. During my job there I have a list of things to do so I don't get lost or wonder what else to do. I had a hard time dealing with kids who don't know me so I just tell them that's ok I don 't feel offended. I really enjoy working with kids at the daycare. Some days I can't make it because of my children being sick. I have to be with them as I am a single mother of five. Sometimes I'm sick as well as my kids so I have to take care of them as well as myself. I seem to manage. I do have support from Healthier Babies. They are people who help mothers who are expecting babies. They help them through their pregnancies and as their babies get older.

It would be hard for me to have a full time job because of not being organized. That is one of my weaknesses. So I also have problems when my kids have homework; both when the work is hard to understand and when they don't want to do their homework

Being a good role model was hard to do because you can 't drink or do drugs. It took me about two years to get back on track when my kids moved back in with me after they were in foster care. My goal was to break the cycle of being a person who drinks every day. I'd rather be a sober person. My kids are happier and I'd rather be happier. I drank because of anger, peer pressure and because I saw my parents doing it when I was young. So I thought it was ok. Now I know that drinking is not the answer. It just makes things worse.

I'm happier the way I am, my kids are happier too and that is my goal.

Barb’s Story: 24 years old, is presently living on her own.

Education:
In the elementary school years, it was very hard for me to grasp things. I had a hard time remembering what I needed to learn. I needed time, patience, and understanding at that time in my life. And it wasn't easy because the people I was around had no clue I had FASD. Because of all the facts and things I had to learn, I didn't enjoy school. So all the good I got out of school was the recess time.

Growing Up:
When I was growing up, people never thought of me as anything much. I didn't get the encouragement I needed. Their favourite term for me was `mentally retarded'. It was always, "She'll never do this or that. She'll never be normal." I was teased and, a lot of times, people put me down. Everyone believed I'd amount to nothing. I went through a lot of pain and hurt. I was lonely and I, basically, had no self-esteem in me. I never felt confident. I had no clue why I felt the way I did. I wasn't young and happy. I was young and troubled. I was always thought of as different and dumb. As a young child I felt confused and afraid. I felt hopeless and I felt very sad. I shed many tears at night praying and hoping the next day would be good and that I'd feel better. When I look back on this time, I realize people didn't know I had FASD - and neither did I. I felt very lost and for me the world felt big and mean.

Life Skills:
I have a hard time keeping track of my belongings...like my bankcard and my keys and even my beloved walkman.

· When I picked up my prescription from the drugstore, I left my walkman and coke. The manager called me and asked if I had forgotten them.
· On coffee break from work I left my keys at the 7-11. Next time I went in, the 7-11 had my keys for me.
· One day I went to the bank and left my bankcard. The next time I went back, they had my bankcard for me.

It's good to live in a small town. If I were to live in a big city, my belongings would have been gone.
I find I can get very frustrated easily. That happens to me when there's too much going on in my life. When things change, I don't like it at all. For example, the Focus class just moved and I'm finding the new classroom is hard to get used to. If people are upset or hurting, I get upset, too. I'm very, very sensitive. Often I don't know why I feel the way I do or why I am the way I am. I have no answers as to why I do what I do. I can get very impatient. Often I can't express myself very good. I can't say what's going on. How people present themselves is a big thing for me.

The things I like to do to feel better are listening to music and talking to people about what is wrong or what happened.

Employment:
I found it hard to find a job suited to me. With my job, one of the things I find hard is getting up and getting there on time. And something I find very helpful is for my boss to write down how things are to be done. For example, she has the telephone instructions written down. The best thing is to have a good understanding boss who knows about FASD.
I've had a lot of help from Anne at my Supported Work Placement in helping me find my job.
Focus Class:
The Focus class is a very special class with VERY SPECIAL people in it. We are very close and it's because we are surviving life together as people with FASD. It is very hard for all of us to live with it 24/7. We help each other out and we give each other support. We have formed a very strong bond. But our lives have been helped for the better by coming to the Focus class. We've learned lots of things on how to cope with FASD. The teachers help us to understand about FASD, about behaviours and characteristics. We've learned to help ourselves so it's easier for us. The Focus class has taught me how to be committed and dedicated to the class and to my work.

How it was for me when I found out I had FASD.
When I found out I had FASD, I felt sad and was wishing that my brain was in good working order. Sometimes I feel like I'm a scratched-up CD or a messed-up tape or like a guitar out of tune. I feel like a singer trying to sing but the drummer is not in time with me. I'm OK but the drummer isn't OK. It's not me, but it's him. I'm OK but my brain is not OK.

We are normal and can still do lots of things. We want to be treated nice and not that we are nothing or that we are no counts. We are real people with a real heart and real feelings. More programs and more support are needed for people with FASD.
After my elementary years, I lived with my family for a while. Then I lived with some friends and later I lived on my own. Then I lived in proprietary care. That is when caregivers help out adults in their homes. Now I live on my own.
I like living on my own because I can do what I want. I have my own money and I can visit more easily. I can have my own life. That is very important to me. I like to decide where I am going and what I will be doing. I can decide for myself.

But I can get lonely too. My schedule can get mixed up and I might not eat or sleep. I also have a hard time doing my laundry and I have lots of problems managing my money. These are things I deal with daily.

Senses:
I am very sensitive to noise, light, smells and the way things feel for me.
· When someone taps on the table it sounds like boom, boom, boom…
· When sunlight comes through the window, it is extremely bright for me
· When someone wears strong perfume it bothers me
· If a chair has wheels, I feel dizzy and sick
· When I use slippery sheets on my bed I feel seasick

Barb

Orville’s Story: 20 years old, is presently living with his mother.
Sometimes the disorder of FASD is not good. But you always know within you that it is not your fault.

I love the fact that at my school people understand what I am going through and so far the first couple of days have been excellent here at the new improved building. It's a good workspace with lots of support. Adult Basic Education and Focus are really unique programs. If you don't do well the first time don't be afraid to ask for help.

I used to have a problem with lack of understanding. Teachers don't realize that FAS is a hidden disability and some teachers didn't know I needed extra help. Our teachers are more aware of students with FASD. The doctors told me I had hypertension disorder while I was a kid but I always thought I would grow out of it. Sometimes I still get confused and bored.

I am very proud and honoured that there is a lot of medical attention on birth defects. What I love here in Canada is we still take care of the young and old who suffer from disorders with communities working together in this day
and age to help reduce the problem. I know I am changing my ways for the better. FASD makes me get mad a lot of times. FASD makes it hard to budget your money. It's difficult to keep track of your bank account because planning never works out.

Keeping jobs is hard. I was flagging and it was difficult communicating on the radio. I'd let the traffic go and they'd get mad at me. This year I'm hoping to find part time work through the. Focus program.

Last year I attended the Focus program full time. It was helpful in preparing me for Access Program. I have to take time to do my work and I some times need things repeated. I learned about FASD in the Focus class last year and got a better understanding of this common disorder.

With support I'm looking forward to the challenges that lay ahead. I have the potential to do my schoolwork with teacher support and some guidance. I feel comfortable asking questions. The future looks much brighter for me and we'll see where we go from here.

Orville