A Glimpse of What Used to Be
By: Janet M. Krumm

With all the talk about block grants, cutting services and eliminating benefits, The Challenge thought it would be important to give our readers a taste of what life was like for families before all those services, benefits and laws we take for granted were around. Vera Hill's daughter Sally was born in such a time. 

"You live in the times where you are and you do the things that are necessary for that particular time of life," Vera Hill explained as she recounted the story of her daughter Sally. "We did what was necessary."

What was necessary back in the 1940's seems almost unimaginable today, with the legal protections accorded to people with disabilities under the Americans with Disabilities Act, the Rehabilitation Act, and the Individuals with Disabilities Education Act. None of that existed when Sally was born in 1943.

It was wartime. Sally's father, George Hill, was in the navy when Vera, who was pregnant with her second child, began the search for reasons why Sally's development was suspiciously slow.

There weren't many doctors, Vera recalled, because of the war and the doctors who were available were so overworked that they didn't spend much time with their patients. Even so, Vera was not prepared for the reaction of her doctor when she raised concerns about Sally's development. "He laughed at me," Vera remembered. He called her a "worrisome parent" and attributed Vera's concern to the overanxiousness of a new mother. Vera never returned to him.

She found another, more sympathetic doctor, Dr. Albert Barcomb, and when Sally started having seizures, this doctor succeeded in getting Sally admitted as an inpatient at The Children's Hospital in Boston for an evaluation. This was no easy accomplishment. Coupled with the scarcity of doctors was the polio epidemic, which was at its height, and the hospitals were filled with polio patients.

So Vera, who had no car, whose husband was somewhere in the South Pacific, who had returned to New Hampshire from Harrisburg, Pennsylvania when her husband was sent overseas, and who was in her third trimester of pregnancy, went to Boston. By this time, Sally's seizures were so frequent that Vera padded her playpen to prevent her from being injured.

Vera called the Red Cross to contact her husband about the situation, but was told he could not be located. Meanwhile, after exhaustive tests, Sally was diagnosed with brain damage and epilepsy. She had been a "blue baby" at birth. "If she had been given oxygen, she would have been okay," Vera remembered being told.

Her lifeline was her husband's mother and father, Harry and Eva Hill, who provided the emotional and practical support her absent husband could not. Hospital rules were very strict then. The only visitors allowed were birth parents. The Hills willingly drove Vera to Boston and waited patiently while she visited with Sally. Vera, however, successfully talked the nurses into allowing her in-laws in to visit. She credits her advanced state of pregnancy as the determining factor in that change of heart.

The focus of the medical community in those war years was on the soldiers who were coming home with injuries. Because of the increasing numbers of men with head injuries and resulting brain damamge and epilepsy, there was more demand for new and effective treatments for epilepsy. Dr. William Lennox, of The Children's Hospital at Boston, was testing a new medication for epilepsy, and Sally benefitted from this research by becoming one of his first patients. Sally was discharged with a prescription for this new medication.

At first, there seemed to be no improvement, and not long after, she had a reaction to the medication. But the doctor advised Vera to continue, believing the setback represented an adjustment to the medication. Eventually, the medication started to work, and Sally started to improve. "But she never did things like she was supposed to," remembered Vera.

In the midst of dealing with this, Vera was scheduled for a Cesarean operation. She was apprehensive and worried that her second baby would be born needing immediate attention, as did Sally. Her doctor assured her that whatever attention the baby might need, he would make sure it was given. And, indeed, there were medical personnel waiting, particularly in case the baby needed oxygen. Fortunately, Michael was born healthy, with no complications. But Vera will always remember the sensitivity of this doctor to her concerns.

About two weeks after Michael's birth, George came home. He had received no news since being informed about Sally's seizures. "He didn't know whether Sally had died or come home from the hospital," Vera recounted. He didn't even know that his son had been born.

Now the family was reunited, and George and Vera began their search for whatever could help their daughter.

The resources in the area were few. Vera remembers having to take Sally to Boston for blood tests once a month to measure the levels of the new medication in her system.

There were clinics in the area, Vera remembered, and a rehab center in Portsmouth, but these were outpatient departments that did mostly evaluation and some therapy. "I took Sally to every clinic and every doctor there was to have her tested and find out what we could do with her," Vera recalled. "I don't know how many places we had her for evaluation."

Their search eventually took them beyond the borders of New Hampshire to the Naval Hospital in Philadelphia, a doctor in Baltimore (whom they continued to see for about three years), and even to a program in Kansas.

They tried every program that offered any hint of help for their daughter. The doctor in Baltimore, who specialized in working with people with cerebral palsy and mental retardation, focused on setting the dominance in the brain. "We had to test her over so many weeks," explained Vera, " and keep records of which hand she used picking up objects." The doctor decided that the right side of her brain was dominant. "I made little sleeves (in her clothes) to slip over her right hand so that she would have to use her left hand," Vera recalled. The day Sally pulled herself up in her playpen seemed like a day of victory.

The Hills held no expectations that Sally would be allowed to enter school in Dover, where they lived. "There was no school available for children (with disabilities)," Vera stated simply. But they wanted to help Sally learn how to talk. Through an ad in a magazine, they learned about a place called the Institute of Logopedics in Kansas, and made an appointment for their daughter.

It was the middle of winter when Vera boarded a propellor plane with Sally to fly to Kansas. During the flight, they hit a snow storm and were forced to land in Chicago. Since flying was out of the question, Vera and Sally boarded a train for the rest of the journey.

Vera and her three year old daughter finally arrived in Kansas for their appointment. After the evaluation, Vera learned that the program Sally would be accepted into was a part-time program. Vera and Sally would have to live in a hotel and Vera would have to take her in for treatment every day. Michael, then one year old, was back in New Hampshire with his father and grandparents. "I couldn't do it," Vera stated flatly.

This experience forced Vera and George to look at what they were doing and what exactly they were accomplishing. "You get to a point," Vera reflected, "where you realize you're not really accomplishing anything."

Back at home in New Hampshire, the Hills began to hear about a couple in Durham, the Stalworthys, who had a son with Down syndrome, who were starting a parent group. They joined with them, and soon were joined by others. This group became the Great Bay Association for Retarded Children.

Since their children were not allowed into the schools, these parents decided to create educational opportunities for their children themselves. They started a fund drive and raised a little over $900, which they used to hire a part-time teacher. They were given space in the basement of St. Thomas Church in Dover for a classroom. This was the beginning of the Great Bay School and Training Center, which is presently located in Newington.

Vera and George worked hard to get this project going, but Sally never attended the classes. "Sally never could go," remembered Vera. "She never fit in." But Vera holds no bitterness about that. "We did it because there were others who could go."

Then the Hills heard about a school at Cape Cod that was founded by the Kennedys and they set off to see it. When they arrived, they were told that Sally was too young for this school, but were referred to a school in Brighton that accepted children Sally's age. So, on the way home, they decided to take a detour to Brighton.

Vera remembers sitting in the car with George across the street from the building and both of them thinking: "They'll never take Sally. It was Catholic...we're not Catholic." Vera recalls George suggesting that they go have a look anyway, and they climbed out of the car and went up to the front door.

"It was wonderful!" remembered Vera. "They showed us all around. It was new; it hadn't been open very long. They took Sally and showed her around."

The Hills were told by the Mother Superior that Sally was the type of child eligible for the school, but that the decision was made by the Board. Excited and hopeful, the Hills had to wait three weeks before they received word that Sally was accepted. They were ecstatic.

Sally was six years old then, still not talking or even feeding herself. She had never been away from home before. Her attendance at the Kennedy Memorial School required her to live away from home. "It was terrible to leave her," remembered Vera. "She couldn't talk....it was very bad." They were told to wait a couple of weeks before visiting to give Sally a chance to adjust.

Sally attended the Kennedy school for two years, at a cost to the Hills of $25 a week. What was so exciting for Vera and George about this school was that Sally actually attended classes. She was learning. "She didn't feed herself when she went in at the end of summer," recalled Vera. "But when we had her home for Thanksgiving, she was feeding herself."

Vera and George visited Sally every other week and each time they visited, a Sister would say: "Sally, show your mom what's on your desk." Vera remembers that Sally would go directly to her desk and eagerly point out her latest creation or accomplishment. "They (the Sisters) taught Sally many things," Vera reminisced.

It came as a surprise, then, and a great disappointment when the Sisters informed the Hills that Sally would have to leave after two years. "They said she had reached her fullest potential," Vera recalled sadly. Though Vera did not agree with their assessment, she had no recourse. "I cried a lot about it when they let her go," Vera admitted.

Sally, who was now eight, came back home to live once again. There were no resources for the Hills, no school, no programs in the community to help their daughter. There was only one place that offered any help at all - Laconia State School. It was there, that after a year, the Hills took Sally.

Getting Sally into Laconia was not an easy task. An admission form had to be signed by two or three doctors, it then had to go through the courts, and finally, Sally could be committed to the school. "There were "committal" papers," Vera recalled. "Such a hateful word!"

Sally's admission to Laconia coincided with two other major events in the Hills' lives: the death of George's mother and Michael's entrance into elementary school. The days were empty with Sally, Michael and Eva not around. "It was terrible," admitted Vera. "It was a hard thing to do. The only reason people did it was because you didn't know what would happen to your children if something happened to you."

Acknowledging that conditions at Laconia State School were less than ideal, Vera emphasizes that Sally was always treated well. "They were good to her."

Sally was admitted to Laconia State School at the time Richard Hungerford was Superintendent. It was a time of reform. Hungerford was on the cutting edge of best practices at the time, encouraging parents to come to the institution and get involved. He emphasized education for those considered able to benefit, and worked hard to improve conditions at the institution.

It was with his encouragement that parents became more organized and eventually lobbied the Legislature for money to improve conditions and the passage of a law to include children with mental retardation in public education. The legislation was watered down to "allow" school districts, rather than mandate them, to provide an education to children with cognitive disabilities.

The Hills turned their attention and energy to the Laconia State School Association of Retarded Children, becoming very involved. George also became President of the NH Council of Retarded Children, while Vera served as Secretary.

George and Vera both got jobs at the school, George as Supervisor of Food Services, and Vera as Secretary to Richard Hungerford. "He was soft-spoken, very quiet and gentle, and very intelligent," recalled Vera. "He had a lot of empathy for people. He was wonderful to work for."

At first, Hungerford enjoyed the support of the elected officials. The governor at the time was Wesley Powell, and according to Vera, he "was very good to Laconia. He used to come quite a lot to the school and we got a lot of improvements.

"John MacIntyre was Senator at the time," Vera added. "They both got involved and knew the school."

The attitude among most officials, however, was different. "You were supposed to put your child in Laconia and forget him or her," recalled Vera. "It was the end of life, really, or so they thought."

Vera remembered an incident at a legislative hearing that she has never forgotten. The parents were lobbying for money to put in new toilets in the buildings at Laconia to replace those that were cracked and leaking. During the hearing, one of the legislators said plainly: "What's the point in getting all these new bathrooms? They won't know how to operate them anyhow."

Hungerford soon lost his popularity with the Legislature. "All the parents were behind him," remembered Vera. "All he did was for your children." Despite the support of the parents, however, Hungerford was forced to resign in 1960.

Sally continued to live at Laconia until its closing. George died in 1974. Vera sold the secretarial business she founded and went back to school when she was in her sixties to get a Bachelor's degree in Social Work. "I always wanted to do that," she answered when asked why.

At the present, Sally lives in Barrington with Cindy, John, Jake and Dawnelle, a family who is "wonderful" according to Vera. She visits Vera at her home every other week, and is happy. She never did learn how to talk, but communicates her needs effectively with gestures and expressions.

Vera admits to being less involved as she gets older. As long as Sally is happy and well taken care of, Vera is content. Her only worry, albeit a major one, is for Sally's future. Despite the conditions, Laconia State School represented security for Vera. She had placed Sally there, believing that there would always be a place for Sally and people to take care of her. Now, that certainty is gone. "It's lost. I have no security now," Vera laments.

Vera does not see herself as a leader, nor as someone who did anything extraordinary. "We all did what we had to do," she stated simply. "You had your children. You wanted more for them, you worked for it. There was nobody to tell you how to do it."

She pointed out the lack of information for families when Sally was young. Richard Hungerford had come to New Hampshire from New York. "We didn't know what was going on in New York," Vera explained. "There was no media, no communication." It was difficult to get information of any kind. She scoured magazines for ads or any hint of programs that might help Sally.

She sees no point in painting her efforts as remarkable, and demands no debt of gratitude from parents of today. "I don't think you owe us any great debt," she stated, "because most parents would have done the same thing."

But she does acknowledge that times today are different. "Society has changed. The whole picture has changed," Vera continued. "The approach is different; people's attitudes are different. If nothing else has been gained, there is more of an acceptance of the handicapped."

She does not, however, believe that all is rosy. "There's still so far to go," Vera admitted. "You hesitate to say there's more acceptance.

"That is what is so frustrating."