MEET NANCY AND HER FAMILY
Nancy Golin is a young, beautiful, happy, lovable autistic 39 year old adult who lived with her devoted parents until she was 31 years old, in November 2001. She is gentle and outgoing, spunky and clever, with a real sense of humor, and the most positive personality one could hope to find in a person. She is very sociable and friendly, and never had any psychiatric problems. When she was 22 she began having grand mal seizures, her doctors believed were a delayed result of a traumatic head injury she suffered in a state program for the developmentally disabled when she was a youngster. She was generally welcomed in the local community, in and around the Silicon Valley South Bay area near San Francisco, and enjoyed being well treated like everyone else. Nancy has never been able to speak more than a very few words, that with difficulty, or write, but communicates well through gestures and actions. It is easy for someone that tries to understand to tell what she wants. When pleased she displays a bright, charming smile that lights up the room.
Nancy was diagnosed with atypical autism when she was only 2. In 1972, a Stanford doctor took her parents aside and told them that the kindest thing he could tell them was to just put Nancy in an institution, forget about her, and have other children. He said his brother had a child like this and it ruined their family, that "children like this get older but they don't get better". But that was not going to happen to Nancy. Her mother, who is very well read, educated and cultured, knew that California State institutions are deplorable. Mrs. Golin imagined herself being put in Nancy’s place (see Mother’s history), and staunchly determined no matter what she just couldn’t do that to another person, certainly not her own daughter.
Until Recently, the parents believed that the best theory for Nancy’s autism was the thimoseral mercury poisoning in her childhood vaccinations, because she showed all the typical development and syndrome after her 18 month DPT vaccinations. The true cause is still unknown and former hot theories are scientifically disputed. Up to that point her development was normal. But at that time this was not known. Autism is not a curable condition and very few doctors specialize in that area, leaving caregivers somewhat to fend on their own, but there are a few options for therapy that parents can try, and a few work. They sought out the best specialists and supports for her care, including available conventional and alternative medicine. They found some nutritional and diet regimes, for example, that had a remarkable effect. In the 70's these regimes were still considered controversial and investigational, but now they are more mainstream. The point was that they worked. They had to adapt their lifestyles and living quarters for her needs. They abstained from having more children in order to have enough time to concentrate on helping Nancy. Mrs. Golin, whose family includes a majority of doctors and dentists, tirelessly read all the latest available resources and research on the subject, finding that there were some studies showing that nutritional supports helped, and worked with medical specialists. No state agency could have come close to matching her parents’ efforts. Gradually she improved. It was hard but the rewards proved it worthwhile because it made Nancy happy and well-balanced.
Nancy's parents found the most difficult challenge to be finding educational programs for her. The local state agencies and SARC’s highly paid "professionals" (social workers) that are required to provide care, refused to provide Nancy the needed programs for her at the critical times in her development, despite years of efforts to pursue them, even after her parents were able to show at their own expense that she could benefit from them. They flatly stated that Nancy was too stupid to learn. This did not daunt Mrs. Golin. This went on for a couple of years, with Nancy being denied speech therapy for example, even though Mrs. Golin was able to show Nancy made progress one-on-one in speech therapy, at her own expense. So Mrs. Golin set up her own one pupil school in a room donated by a church and found a volunteer teacher to work one-on-one with Nancy every day. This did not sit well with these state vendors, who thought that with their degrees and education they felt they were supposed to know more than Mrs. Golin possibly could about such things, but they did not relent and provide needed services, even though Mrs. Golin got an attorney to help her seek them more effectively. They only harassed Mrs. Golin and the teacher. One reason might have been that the state agencies do not get money for children that are not in their programs or living at home. But they still would not provide useful resources for her.
When Mrs. Golin read about all the handicapped children who were dying or being injured and abused in state care in California at the hands of the local Regional Center due to neglect and mistreatment, she became a sharp critic of her local San Andreas Regional Center, and voiced that criticism at every opportunity. Her voice was not alone. While she tried their programs with hope rekindled again and again, SARC never seemed to be able to provide anything helpful to Nancy, because an autistic like Nancy benefits most from one-on-one tutoring. In groups, they tend to mistakenly copy destructive behaviors from one another that they take home and soon become impossible to integrate into the community, and then institutionalization remains the only option. Almost all the other children in Nancy’s first day program soon ended up in state institutions. Not Nancy. Whenever her mother found that Nancy was copying maladaptive behaviors or was getting hurt, she would remove her from that program and seek a better one. In the community, autistics learn from normal role models, always a better mix.
Nancy loves to travel around with her parents who take her everywhere with them, and she loves to hike and shop. She had the best food, medical care and exposure to stimulating experiences possible. Her mother learned everything she could about Nancy’s condition, what worked and what didn’t work. The goal was to give Nancy a life she could enjoy without stifling her interests. They would go on camping trips, to museums and arts and crafts shows, hiking, duck and whale watching, and on a cross-country train trip in 2000 back to Chicago. Her mother dressed her stylishly so that she would be accepted in public and not discriminated against, and so that society could see people like Nancy as belonging in the community. Strangers would walk up to her parents in public and praise them for what they were doing. They talk to her the way they would anyone else, even though she cannot reply. When Nancy on rare occasions wandered away to walk around in the neighborhood as many autistic people sometimes do, the local police would help the family find her and bring her home to safety, Nancy grinning impishly. To limit the number of times this occurred to a minimum, the parents locked themselves into their apartment whenever they were home, never left the house without her, and closely monitored Nancy when she was awake, in shifts. Housing was always difficult for them because of housing discrimination against the handicapped, but the parents managed to maintain a stable residence nevertheless. Monitoring Nancy is never easy because she is so active, as the state has found out, but the parents' performance has so far been unmatched, and they never subjected her to physical or chemical restraints.
Nancy loved watching her father and mother work in their workshop, when Mr. & Mrs. Golin started the family’s neon sign and lighting business in 1990 to afford more time and flexibility to be together as a family. Elsie proved herself a natural neon artist with an unfailing gift for commercial style, and Jeff taught himself the art of bending neon glass by hand, processing tubes, and installing and repairing signs and cove lights. They operated the business themselves rarely ever needing employees. They were widely appreciated for their colorful, tasteful and creative art signs, which at one point graced the length of Mountain View’s downtown Castro St. helping to spark a revitalization of the central district in the 1990’s, and can still be seen over the Bay Area. Mr. Golin had a long career as a research physicist and engineer, inventor and marketing executive in Silicon Valley, with an MS in Physics with honors from MIT. He holds a patent in 1978 on a sealing method for lighting tubes, enabling a method now used for mass production of cold cathode tubes. He also participated in a 1996 UL code panel submission that resulted in a revision to the Section 600 neon lighting National Electrical Code (NEC) affording a in significant reliability improvement to neon lighting installations. Elsie has an amazing talent singing and playing her tenor guitar, with an almost endless repertoire of ballads, folksongs and amusing kid songs that she plays almost effortlessly for Nancy. Mr. Golin has now studied the law on his own for the past five years, filing his own pro se motions, doing his own legal research, writing petitions and briefs in state and federal court, and in the US Supreme Court, on behalf of his daughter, his wife and himself, and assisting his attorneys. Her parents recently celebrated their 47th wedding anniversary, and are now both 68, in good health and semi-retired on a Social Security pension. Mr. Golin has been employed for the past two years doing legal research under contract with the supervision of an attorney, and entered law school in Fall of 2009 (see also, “Court Documents” tab on this web page).
Whenever Nancy had a bout of seizures or suffered an accident or cold, everything in the Golin family stopped and Nancy was immediately rushed to a hospital or clinic for treatment. Mrs. Golin never left her side and one of the Golins was always there to consult with her doctors for her. There was never any hesitation or lack of care. Nancy had MediCal and could go any time it was necessary. The Golins could never be too cautious because Nancy could not complain if she had an ache or pain and could not describe her symptoms or medical history to a doctor. If a condition appeared chronic they insisted on getting to the bottom of it. They sought out the best board certified neurologists available. To make sure there was never any confusion between the two parents, Mrs. Golin handled her medications exclusively, and always followed her doctors instructions to the letter. They took her to the Stanford Sleep Clinic in 2000 and found that Nancy had sleep apnea that kept her from getting enough oxygen at night, which could precipitate seizures, so the Golins kept oxygen handy at home for emergencies, with a doctor's prescription. In spite of this, as any experienced neurologist knows, anti-seizure medications are highly individual-specific, and breakthrough seizures (ones that happen despite proper medication) still will occur, especially during a cold or flu, and at any time the metabolism of the drugs in the liver varies for any reason.
The very idea that Nancy could be regarded some day by a judge as having suffered "a long history of neglect and abuse", forcing the parents to have supervised visits with Nancy and forcing her to live in a group home for the rest of her life would have appeared almost insane to most people, the furthest thing from anyone's mind. Certainly the Golins' friends didn’t believe so and told Judge Martin that during the probate conservatorship trial. All those years went by and the Golins proved repeatedly that they were caring more than adequately for her. Suddenly, when Nancy is 31, they are supposedly child abusers? Yet that, incredibly, is what Adult Protective Services and the State’s San Andreas Regional Center were able to trump up against the parents building up a false record and conspiring with the State of California in order to get Nancy taken from them and placed in state custody, saying they were protecting her, in November of 2001!
Web design and most photos by Jeffrey Golin, page last updated February 11, 2010