Margaret Willms' Story

Fetal Alcohol Syndrome
by Margaret Willms

It would soon be time to leave Little Grand Rapids. I had already sent in my resignation. Not long ago my sister Helen had visited me and I had expressed an interest in adopting a child. Her suggestion was that I shouldn't wait too long if I was going to do it because I wasn't getting any younger. One day I expressed this interest to the Chief of the Reserve and Gordon, the community health worker. They were both very encouraging, saying there were several children on the Reserve who had experienced neglect.

One day Gordon came to me after work and said, "Margaret, let's see if we can't find a child for you." It was still winter, so we took the Skidoo across the lake to the Reserve. At the first home, the mother wasn't willing to give up her child. 'What parent is ever going to be willing to give up her child?' I thought to myself. However, Gordon insisted on going to the next home. Here was a mother with three children. She said she would think about it. The grandparents were very agreeable to the idea. The next day Gordon came with the signed paper. The mother thought that her youngest, Emily, about 11 months of age, would find it least difficult to adjust.

On the morning of the day I was leaving the community, I went to pick up Emily. After a bath, she slept. The mother came to see us off as we left on the plane. I was prepared to give her back, if the mother changed her mind, so I felt relieved once we were airborne.

The Little Grand Rapids Nursing Station had been my place of work for the previous two and a half years and for this reason Emily's family trusted me to care for her. I am certainly indebted to them for allowing me this experience.

Right from the beginning I decided to dedicate Emily to God, and so I would need to do everything in my power to give her as good a chance at life as possible. This included taking her to church on a regular basis and to Sunday School when she was old enough. I read to her a lot before she started school and helped her to read after she began school. Emily found school-work difficult, so I'd work with her to help her with reading, math and spelling. I wanted to help her keep up with her classmates. She continued to have problems in school, mostly with learning, but whenever I suggested it was okay to let her repeat a grade the teachers felt that wasn't necessary, at least not in elementary school. I didn't want her to give up trying because she couldn't keep up with her peers.

There were some disciplinary problems at home. For instance, I'd instruct her to come home immediately after school and we'd decide then if she could go anywhere after that. However, if a student would ask her to go home with him/her, she would go. No punishment or incentive worked to make her listen. Once she recognised the value of money, she would help herself at any opportunity. I thought I had found a solution. I would deduct from her allowance double what she took from me. But the only thing that worked was to keep my money locked up at all times when I didn't have it with me.

In spite of the problems while in elementary school, I felt they were manageable. Once she started Junior High, problems began to escalate. The most difficult to deal with was her running away from home. At first it happened once in a while, but gradually it became more frequent. When she did get home, she didn't or couldn't tell me why she had run away.

At one point in Junior High she was very unhappy in school. She said she wanted to live in a foster home and go to another school. I was so desperate that I thought if she lived in a foster home and was happier there it would be worth a try. I phoned Social Services and they said they would send out an Intake Worker. The Worker wanted to meet Emily when she came home from school at noon, so I invited her to come for lunch. She wanted to observe my and Emily's interaction. She couldn't come after school because then I would be at work. Her report concluded that living at home was probably the best place for Emily. It was reassuring to a certain extent, but didn't solve my problems.

Gradually the serious incidents escalated even though she was seeing the psychiatrist and a therapist on a regular basis. At a certain point it was so hard to know how to deal with all of her behaviors, that I just didn't know what to do. I decided to call the therapist. I had made a list of the incidents which I read to her. I wasn't even half way through when she interrupted me saying that the psychiatrist, I'll call him Dr. Peters, was leaving shortly and she thought it was necessary to talk to him before he left. When she called back she said Dr. Peters wanted Emily admitted to a group home not far away where she could be assessed and possibly diagnosed. She said she would make the arrangements. Later, Social Services called me to say that the group home had no vacancy but that they had made arrangements to have Emily admitted the following day to a short term intervention home right in the town where we lived so that Emily's schooling would not be interrupted. After school I informed Emily of these plans. She raised no objections. Because Emily's behavior had been so unpredictable I decided to keep Emily home from school that day to help her thoroughly clean her room. In the afternoon the Social Worker came to take Emily and the things she'd packed to her new home. At night I thought of Emily and I was amazed at the tremendous relief I felt in knowing that Emily was safe.

The following day, after I returned from work, Emily called. She wanted to know if she could visit me. I said that she could, providing Rita, the group home mother, gave her permission. Later, Rita arrived with Emily. Emily needed some more clothes so I suggested she get them from her room. She spent more time there than I expected. Upon checking on her I found her crying, "I want to live with you." After a few weeks when a bed became available at McMann group home I took her there. She was happier there.

While at McMann Emily had an appointment with Dr. Peters. I brought her there and waited in the waiting room. Later he spoke to me. Among other things he mentioned that since I was the only person Emily had run away from I was obviously responsible. That was probably the most hurtful statement I heard from him. Generally I was fairly happy with him. In any case, when we returned to the waiting room, Emily wasn't there, she had run away. The doctor did not apologise but it was obvious he realised that this time she hadn't run away from me. In the following months and years she ran away from many others.

After several months at McMann Emily's bed was needed by someone else so she was transferred to the Old Man River group home. This group home was located in a farm setting an hour's drive West of our home. When we arrived Emily said, "I'll stay here, but this is not my home." She enjoyed working with the animals but starting a new school in March was difficult.

Construction of the Old Man River Dam commenced abut the time Emily moved to the group home. After she'd been there for a while I was told that after the dam was complete the water would rise to a little below where the house was standing. The house could not remain where it was due to the level of the water. I was very upset. The powers that be had known that the group home had to be closed. They also knew that they were dealing with adolescents who had serious problems. Changing schools is difficult for any child, so an effort should have been made to transfer them before the beginning of the school year.

Emily was now transferred to a group home in a city an hour and half East of our home. Her school problems escalated and her running away also escalated. Months stretched into years and Emily's behavior did not improve. She was in and out of group homes and even spent a year in a mental hospital. She'd be expelled from one place and then would have to come home until another placement could be found. The difficulty in having her at home was that she was unsupervised when I was at work.

In October 1993 I was able to arrange for her to move into another group home where she would live with two other women and there would be twenty-four hour supervision. This was one of the group homes run by Next Step Agency. She took her mountain bike along which was stolen the first night there. In spite of this she called me the following day, "Mom, guess what, I can't believe I'm living in my own home." It was so good to hear her enthusiasm. For the first while she was not allowed to go on outings by herself. I was amazed at how she adjusted to this. She was told that she should let them know when she was ready, then they would sit down with her and write a contract. This way she would be able to earn privileges so she could take short outings. When she finally earned the privilege she was allowed to go out for fifteen minutes. When she came back on time she would be able to repeat the outing the following day. Sometimes she would lose the privileges but over the years they gradually increased. She was always made to understand why the privileges were either given or taken away.

Emily spent more of her weekends with me and at times she could be very difficult. Kim, the supervisor from the group home, once asked me how the weekends were going. She said that if Emily misbehaved again I should just bring her back to the group home at any time. If Emily should become so upset that I didn't think I could handle her while I was driving, I should call the group home and they would come and pick her up. Once Emily knew the rules her behavior improved tremendously. This was so different than anything I'd ever experienced at any of the other group homes. There I might get a call, "Come right now, we can't handle her."

During Emily's first year with Next Step arrangements were made for her to see a consulting clinical psychologist from Edmonton. The Career Centre that made the arrangements asked me to supply them with Emily's school records and the results of any psychological tests she'd had in the past. When I inquired about some of her school records I was told that they had been sent to Edmonton and sealed and couldn't be accessed for a number of years. I was later informed that they thought the records had been sent away but that the records had in fact not been sent so I had access to them. In the end the people at the Career Centre were amazed at all the records I'd been able to get. I decided that if there was some way I could help Emily I would not let anything stop me from attaining that goal. When the results of the tests were available Emily and I, as well as Nancy, the Social Worker, and Kim, the supervisor, had an appointment with the Doctor. He explained that first he would speak to all of us together and later he would speak more to the others. He had the model of a child's brain. He said that usually injuries occurred on the outside of a brain, but in Emily's case, the injuries had occurred in places inside the brain. This happened before she was born because the birth mother had consumed something harmful that had caused the damage. When the Doctor spoke to the others Emily quietly said," I never want to see my mom again." I put my arm around her shoulder and she put her head on my shoulder. As she repeated the statement several times tears rolled over her cheeks. Later the Doctor said she didn't have to see her mom again if she didn't want to.

After I got home I thought about what it must feel like to be responsible for your child's serious handicap. The child has to live with that handicap for the rest of his/her life. I don't know how I could live with that knowledge. On the other hand Emily's birth mother had never heard of Fetal Alcohol Spectrum Disorder at the time she was pregnant with Emily. I had not even heard of it at the time, nor did I know that a mother's drinking could affect her unborn child. I think we need to work very hard at broadcasting the danger, and supporting pregnant women giving them an alternative to drinking the alcoholic beverages.

It was a number of years earlier that one of my co-workers told me about a television program, known as 20-20, which told about a man who had adopted three children. He had a great deal of trouble with the oldest one. One day, while on an Indian Reservation, he observed some children who reminded him of his oldest son. He was told that they had Fetal Alcohol Syndrome (FAS). Their brains had been damaged due to their mother's drinking during pregnancy. The description of these children had reminded my co-worker of Emily. Later on several more people, who had watched the program, said it had reminded them of Emily. When I mentioned to two different doctors over the years "Could Emily have FAS?" their response was that even if Emily did have FAS their treatment would likely not be any different. These doctors had likely never heard of FAS during their student years.

The diagnosis that Emily had FASD (Fetal Alcohol Spectrum Disorder) confirmed my earlier suspicions. I was also told that with such a diagnosis her place in the program was assured. Earlier, Emily's application for her program had been refused, saying there were too many people with problems similar to Emily's and they couldn't all be accepted. I was also told that I could appeal the decision which I felt I had to do because I didn't know how to manage otherwise. The appeal board listened and eventually the original decision was overturned in Emily's favour. They said I'd tried so many other avenues and felt Emily should have another chance.

In the ten years since then Emily has shown a great deal of improvement thanks, to a great extent, to the very good program. They were very consistent in the way they dealt with each client. All staff were made aware of this. I was aware of Emily's program and supported it.

The fact that there were only three residents in the home contributed to it's manageability. Emily participated in an anger management course which was very helpful. I noticed how much more compassion Emily had towards her roommates, as the other residents were referred to. I kept hearing remarks from others, "Emily is so friendly", "She even looks as though she's doing much better."

Through the years, when Emily was living in different places, she would look for a church to attend on Sunday. I'm sure I encouraged her to do this, but if she hadn't wanted to, she would not have done so. When I visited her on a Sunday morning she wanted to take me to the church she attended. One year, when she was already living with Next Step, she decided to take baptismal preparation classes at our church. The announcement said that interested people were invited to attend the classes but, in attending, were not committing to be baptised. When Emily announced that she wanted to be baptised I had second thoughts about it. Then I remembered how very much I had learned and matured since my baptism so I needed to give Emily opportunity to do the same.

It's been eleven years since Emily moved into the Next Step group home and I'm very grateful for how very well those years have gone. As Emily mentions in her report, for the last four years she's been living with Kim, the former group home supervisor, as well as Kim's husband and their two sons.


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