Monica Venice, left, and Susan Marie Williams meet to renew acquaintances at the Opal Theatre Presentation of Creative Chaos earlier this year.
My wife, Mary Jean, and I, were blessed with the birth of a fine healthy son. Three years later, we were blessed with a healthy baby girl, healthy in all respects but one – she was diagnosed at birth as having Down Syndrome, and also a severely twisted foot.
I bring you this story of the decision this one family made – to keep a special-needs baby.
I”ll start the story by saying the doctor who delivered both children, and his wife-nurse, were personal friends of Jean and me.
Mary Jean, after six months of dating and 49½ years of marriage, passed away from lung disease in 2007.
The doctor and I were close, as we both enjoyed model railroading and photography. I was fortunate enough to have a train set stored in the closet in a box that I had received in 1946. On the other hand, the doctor had a basement full of model railroading. He also had a nice basement darkroom. He and I would develop and print pictures, and run trains, while the ladies visited upstairs.
Our son had good health, mind, and body, as he was early potty-trained, early walker, and was putting sentences together quite early and showed a great deal of mechanical aptitude.
When special-needs daughter came along, Jean had had a particularly hard delivery. At about 5:30 a.m. in the hospital in Everett, while I was in the waiting room, the delivery doctor and family friend motioned me to come into the doctor lounge. He still had his scrubs and head covering on, and I noticed blood down the front of his smock.
I wondered why he was calling me into the lounge – what could have happened to that healthy mother. As I sat down with the doctor, he told me that Jean was fine – still sedated. And that he delivered in many respects a healthy baby girl with the exception of it being first delivery of a Down Syndrome. And after delivering 2,700-plus babies, the first Downs had to be to friends.
That day the doctor talked about our son, as he felt Matthew was exceptional and would have a bright future.
As we talked about Downs, he recommended we put Susan in an institution, and that Jean not see her newborn baby, as he felt – if she once held the baby, she would bond, and the decision of institutionalizing would become much more difficult.
We must remember that social acceptance of special-needs people is more supportive today than it was 57 years ago.
I told him that I could not make that decision, I would have to talk to Jean, and it would be awhile before she would be awake to make rational decisions. He said he had to know if he should allow her milk to come in or to give her a shot to dry up that process. Again, remember, things are different today.
I gave permission to give the shot to stop her milk. I have, after the fact, regretted that decision from day one.
Jean would not hear of our daughter being institutionalized. It was our responsibility, and we would assume that and care for the child. The three of us – the doctor, Jean, and I – had long conversations about the impact Susan might have on Matthew’s social and educational life, and the needs of a special-needs child for Jean and I.
In this conversation, the doctor was thinking about and looking at the social life Jean and I had in the community, with United Way and many other events in the neighborhood and community.
In that conversation the decision was made that we would indeed be the parents and care for a son and a daughter. We were given a list of educational facilities that would help parents of a newborn special needs child in successfully understanding and raising that child. First we were put in contact with Children’s Orthopedic Hospital in Seattle, as it was felt Susan would need casting on her twisted foot. This was done over a long period of time and was very successful. The casting was changed ever so often and braces were added to bring the foot around to normal position in the first 2-3 years of development.
We were immediately put in contact with Clinic 8, which is part of the health and science portion of the School of Medicine, University of Washington. Jean and I went to many classes on the care and psychological understanding of special-needs children. Jean spent many sessions in a study group where students of psychology would view her interaction with daughter behind one-way glass. I don’t recall how long these sessions went on.
Down Syndrome is diagnosed in 3 categories. 95% are classified as Trisomy 21. In this category, the embryo has 3 copies of chromosome 21 instead of the usual 2. A second classification is Translocation. Each cell has part of extra chromosome 21, or an entirely extra one. You either have one or two more than normal. I am unable to recall the 3rd category
I cannot say enough of the splendid care we received at the Children’s Orthopedic Hospital. As many know, the hospital works in conjunction with the School of Medicine at the UofW. As Susan’s teeth started to develop, she required a great deal of gum surgery and dental work. This was all done with intern dentists at Children’s Orthopedic Hospital through the University of Washington School of Medicine, under the supervision of senior dentists. The hospital worked with a local Everett orthopedic surgeon to correct Susan’s twisted ankle over a long period of time with great success.
There was some hesitation in the family accepting Susan. In retrospect, I think this was strictly through lack of knowledge of people not understanding nor having been around special needs children.
In a short time, all the family accepted Susan.
As Matthew and Susan grew, and Matthew’s friends started coming to the house, it was apparent that Matthew had many friends. Starting at about 4 or 5 – swing sets and teeter-totters in the backyard, dogs and cats, and the fenced-yard full of neighborhood playmates. Birthday parties. Holidays and weekends were busy at the Williams household. The significant point here is that Susan was always accepted into the play activities. Of course, she could not participate in checkers and that type of games. I must say that when each new face showed up in the yard or at the front door, Jean would have a one-on-one conversation as to what to expect of Susan. Jean had a way of counseling and getting across the understanding that Susan was different in some ways. One and all – the playmates seemed to understand and accept.
Several of his friends made special efforts to include Susan. Jean and I, in all respects, treated Susan as a normal child. When she became school age, the Everett Washington school system was mainstreaming special needs into the regular classrooms. So she started kindergarten, and the first four grades in Everett.
Jean and I continued classes to further our education and understanding in both Washington, and after we came to Oregon, in regards to the psychological needs of special-needs children.
In moving to Oregon in 1975, they were not mainstreaming special-needs children at that time. Susan was enrolled in Pearl Buck. The clients received special training by special-ed teachers. Colleen Patterson, wife of Pat Patterson, former city council member in CG and retired line chief for PP&L.
For many years, Colleen drove the special-needs school bus from Cottage Grove and Creswell to Pearl Buck. Becky Venice, who has a daughter with Down Syndrome, became friends through the daughters. Becky was president of Special Needs Organization in Cottage Grove. Jean became treasurer, part of the fundraising for Special Needs and Special Olympics.
Monica Venice, in Cottage Grove, has been a close friend of Susan’s for many years. After Susan went to a group home in Santa Clara and later Eugene, Monica and Susan would meet on special occasions, such as the Cottage Theatre Special Olympics banquets, and other get-togethers here in Cottage Grove. Jean and I would have Susan with us for these many events.
In the years preceding Susan’s foster care provider – 1976-1984, Susan remained with Jean and I here at home. Susan accompanied Jean and me to most events. The only exception was at formal settings, where she would become impatient and fussy. Through the years, Susan would accompany us in all the activities Jean and I had in both Everett and Cottage Grove, such as United Way fundraising, Bohemia Mining Days, parades, and a variety of other activities.
Forty-plus years after our arrival in town, I’m approached now and then by acquaintances from the past who ask me about daughter Susan. This is one of the reasons I am writing this story about her.
Here is the story – the reason Jean and I made the decision for group care. In 1983, I was president of the Chamber of Commerce. I was also spokesman for my employer in the community. Jean was very active in several community organizations. For some of the more formal affairs we needed a babysitter for Susan. We had one in Santa Clara who was a foster mother in a group home who also had a daughter, Heather, with Down Syndrome, and who went to Pearl Buck with Susan.
Either Jean or I would transport Susan up to the babysitter so we would be free for formal dinners. This worked for several months. One weekend, we had a Chamber of Commerce banquet on a Friday evening, another Chamber event on Saturday, and a 2 p.m. wedding on Sunday. Jean made arrangements with the care provider (babysitter) that Susan would go Friday morning to Pearl Buck, and at the end of the day go from PB to her care-provider home. This was set up with Colleen, the bus driver, and the Santa Clara bus driver for special needs.
Monday afternoon Jean got a call from Pearl Buck wanting to know if there was a misunderstanding, as Susan had convinced them she was to go back to Santa Clara. Of course, Jean said Susan was to come to Cottage Grove. It set us to thinking – Susan is a very social person, very outgoing, and enjoys people. She was raised with Matthew’s friends and a house full of playmates. When she comes home from Pearl Buck to us, she has her dog and her phonograph, four acres, and elderly neighbors.
When we analyzed this, we realized Susan was happier with several of her peers. About six months after this happened, Heather developed pneumonia and passed away. In late 1984, Heather’s mother, who was the care provider for several clients, called Jean, knowing the discussion Jean and I had had earlier about the possibility of a group home, and made her offer.
Over the years, Jean and I have never regretted that decision for these reasons. We would pick Susan up for many weekends – she was always happy to come home to mom and dad. But she was also very happy Sunday evening to go back to her care provider, and her brothers and sisters. This was true for one-day events, like birthday parties, or 3-week vacations. She was always happy to be with mom and dad, but she was happy to go back to her new brothers and sisters.
With Jean’s passing, I spend much less time with Susan, due to the fact that she needs female supervision for restroom duty. Susan loses track of time. I have to ask perfect strange ladies to go in and get her out of the restroom.
Most Downs children have a good life for the first 30 years. Many do not reach age 57, which is Susan’s age. Those with Downs have smaller organs. The reason for the syndrome is one more or one less syndrome chromosome.
Let me conclude, that in the years Jean and I cared for Susan, we never regretted that decision the day of her birth, of keeping and raising her as a normal child. Jean always had the saying – that Susan was sent to us as a blessing that we were given to care for.