Speaking out for People with
 Intellectual and Developmental Disabilities

All about Anne Golden

Submitted by Sam Golden
 
Anne was the third of our four children. The first two were Daniel and Jonathan, born, respectively inh 1951 and 1954. She was born on April 7, 1956, so she is now fifty years old. Our first two children were boys and, after our experiences with Anne we decided to have another child and our daughter Miriam came along in 1960.
 
We lived in two different apartments in Hyde Park, on the south side of Chicago, when our boys were born. With Anne we acquired a small house in a development further south in Chicago. Anne had problems from the start. She was very small and she developed severe seizures early on.
 
We took her to our pediatrician and he recommended a pediatric neurologist. This turned out badly- they performed a procedure on her (pneumoencephologram) which caused more seizures and arrested her development further. Thereafter we vowed not to go for any faddish procedures but take Anne as she was and do our best.
 
We were advised by another pediatric neurologist who practiced at the University fo Chicago to place her in as normal a situation as possible so she could have contact with other children. Thus when she was 4 years old we were able to place her in a regular nursery school run by some most dedicated and understanding people. She stayed there for 6 years, during which time she lived at home.  We had a wonderful woman who started as a full-time housemaid and took care of her - and was the confidant of our other children as well. All our children loved her but Anne was especially devoted to her and still talks about her years after her death. This maid, Dorothy, was a black woman who had come up from Mississippi. She was the oldest of about ten children and had cared for her siblings like a mother. So she was well prepared to take care of our brood.
 
Anne did well in the nursery school but by age ten it was obvious that she needed something else, and it was becoming difficult to take care of her and give adequate attention to her siblings. The nursery school operators operated a summer camp for retarded children. That way they knew of a woman named Irene Klingberg who operated a day school in the basement of the Lutheran church where her husband was the minister. She had recently purchased a house and grounds near Wauconda, Illinois, to for a residential school for retarded children. She constructed other buildings there. She ran the school well, and brought her adult sons in to the business (she was by then a widow). One son was also a minister. The younger son took charge of the school and it was a good place for Anne from the age of 10 until 24. Unfortunately the school came into hard times. Funding from the state was not reliable, and the son who was the operator fought the state over this. The battle was not successful and the school went bankrupt. The State got another operator in.
 
However Anne was too old to be in a school and needed to be living in a residential facility for adults. Through the good offices of the State, Anne and about seven other women were admitted to the Mt. St. Joseph Home for Women, not far away, in Lake Zurich. The Daughters of St. Mary of Providence, a Catholic order based in Rome, operates that facility and several others in the United States. It is a beautiful facility on a very large tract of land which is partly farmed. The Nuns who run it are inspired, dedicated and truly do a wonderful job. They have many lay staff assisting them
 
Most of the residents are severely or profoundly retarded, many with other handicaps as well. The 24/7 care, with a full staff of nurses and a doctor on call see that the residents are well cared for. Almost all the residents have outside activities, either in a workshop or, as in the case of Anne, in an activity center. When Anne entered the home, the administrator had heard that I was active in the parents group for the Klingberg School and asked me to serve on the Board of the Mount St. Joseph Association, made up mainly of parents and siblings of residents. I was made Vice President of the Group and when the President, Marty Pratt, resigned in a huff I found myself, a new parent in the group- and Jewish at that- as President of the Association. The Sisters and the Board always made me and Paula comfortable and have been wonderful to work with.
 
Anne is said to have an IQ of 20 and to function on the level of a 1 1/2 or 2 year old child. She is very short, 4'5", and weighs about 80 pounds.  But she is a darling person. She is friendly to everyone, greets everyone who passes by- and knows no guile. She is very good natured- laughs a lot, often at her own jokes. She loves music and sings along -in tune and rhythm- with songs and when her parents play music. She has her own limited language. I once compiled a lexicon of her words which we call "Anneglish". Some of her words are recognizable but you have to be in on the know to understand much of what she says. She will put two or three words together to make a sentence. Like "Calla (her word for Momma) fixit". Meaning anything from helping her dress, make the bed, wash the dishes or do whatever task needs to be done around the house.  "Eat Taisam" means she wants to go to a restaurant ("Tai Sam" was the name of the Chinese restaurant we used to go to in the neighborhood long ago).
 
Anne lives a full life according to her limitations. In addition to going to a daily activity program, the home takes the residents on outings. Once a year they will go for a period of weeks to a camp owned by the Order in Indiana. Anne comes home every month for a weekend, 2-5 days. There she often gets to visit with her siblings and five nephews, all of whom she adores. She likes to go to the grocery store with us, and loves our Temple. In religious services she participates as long as there is music and it is lively. At the Home she is a good Catholic, going to Mass, and at home she is Jewish and participates in home and Temple services.
One recent weekend, as an example, we picked her up on Friday and took her to Temple to hear a half-hour concert by a young harpist, followed by a service. Then she accompanied us to the performance of the local school of ballet. The next morning we again went to Temple for Sabbath services. In the evening we went to a concert of the Grant Park Symphony outside in Millennium Park, downtown Chicago. It was a two and a half hour concert and she enjoyed it very much. It was then late and we hadn't had dinner so we went to dinner at our current favorite Chinese restaurant. Sunday we took her back to the Home. Not exactly a reclusive life!
 
Anne is on a number of medicines, including one to control seizures. She is partly paralyzed on her left side. We have to get very special shoes made for her- her left foot is deformed and weak. Otherwise Anne has remained in good health and the nurses at the Home monitor her physical condition carefully.
 
Yet all depends on her continued life at the Home. With her limitations, she would not have a good life in a small group home- the limited staff could not care for her or involve her in the kinds of activities she new engages in. At best she would be confined to a small home or apartment. She certainly cannot go anywhere without total supervision.
 
What of the future? We are now over 80. Our hope is that after we die she can continue to live in the Mt. St. Joseph Home indefinitely. Her siblings will look after her needs, but they could not take her into their homes. And a group home would not suit her- what kind of assurance can you have that a group home will stay around, retain good staff, and not result in abuses such as have been reported in Washington DC, California and elsewhere? Group homes serve an important purpose for the mildly or moderately retarded who can function on their own with limited supervision. They are highly problematic for the severely, profoundly and multiply-handicapped people.
 
When Marty Pratt quit the presidency of the Mount St. Joseph Assn. he was deeply involved in organizing the VOR. He persuaded me to get on the VOR Board in 1983 and I just retired from the Board in 2008. Marty was an inspired leader. With little background in legislative matters, he learned what to do and helped organize a strong campaign to stop the Chafee bills which would have frozen Medicaid funding of institutions, thereby causing them all to die. I admired Marty greatly and tried to help him in ways that I could.