My Journey with Shari by Bob Scott

It was snowing in Anchorage on April 24th when I drove Sue to the hospital around 6:30 to have a baby. Shari was born at 10:30 and looked perfect. She was tiny, only 6 pounds, compared to our son Rob’s 8 pounds four years earlier. Shari also had lots of dark hair and a pretty face with tiny features. Definitely a girl! Even her cry was tiny, compared to Rob’s loud yelling as a newborn.

Earlier that day, I had just been offered a new job with 100% medical coverage through the Alaska Teamsters’ Union. Little did we know how important that financial help would be. We were both 22 and thought our life was almost perfect for our little family in April, 1974.

At first, Sue had some concerns about Shari’s ability to do the normal baby things like suck and swallow. But everyone reassured us that Shari was just fine; she was not Rob and would do things at her own speed. When she was a few months old, Shari could sit up propped on pillows. I would come in to the room and make a deep throat sound, pointing at Shari, and she would startle and fall over laughing. We thought it was a big joke, but the startling was getting more and more frequent. Sue was concerned that Shari’s ability to sit up was getting worse instead of better, and the doctor still thought everything was fine. So Sue talked to me, and I told her she was making mountains out of molehills. If we just didn’t worry about Shari, we could later look back on this as something that had worked out just fine.

Finally, Sue got the name of a developmental pediatrician at Children’s Hospital in Seattle, and asked for a referral from Shari’s pediatrician. At 18 months Shari made her first of many trips from Anchorage to Seattle for appointments at Children’s. We all flew down and visited both sets of grandparents in the Seattle area. Shari had an EEG and saw Dr. Stone, who asked a million questions and was especially interested in the startling and falling over, which turned out to be myoclonic seizures. By then they were occurring 20 to 30 times a day.

We didn’t get the answers we wanted for a long time. Nobody called or let us know that the results of the EEG were disastrous. Actually Dr. Stone wanted a neurologist in Anchorage to see Shari and follow her, since she needed medication for her seizures. But appointments were hard to get, and answers over the phone were impossible to obtain.

After several weeks went by with no answers, Sue bought a book written for parents about epilepsy. It explained all types of seizures in children and said that myoclonic seizures were usually seen in children who would be severely retarded, and most were put into institutions. Sue stayed up and cried all night, but still couldn’t get an answer for another month about whether Shari had myoclonic seizures and what her prognosis was. The diagnosis actually came from the insurance company, on a bill that had a diagnosis of “Questionable myoclonic seizures, questionable mental retardation.”

Of course, those were stressful days for all of us, with Shari on different medications every few months, and her hyper-activity and lack of progress. I wanted to hope everything would blow over and turn out fine, while Sue thought the worst was yet to come. Rob was in school by then and had his friends to play with in our little trailer court. Though he didn’t always get the attention he needed from Mom and Dad he didn’t complain. Sue was staying home and I worked a lot of overtime to make ends meet.

By the time she was three, Shari’s seizures had increased to 30 to 50 a day. She took two to three seizure meds twice a day, and often seemed drunk. But still her hyper-activity continued. She climbed and fell so much she had to wear a helmet. And she twiddled every string she could find. She loved to clump shoelaces together and wave them in front of her face. She was still small for her age, and very pretty. And of course, being the first girl in 50 years on my side of the family, she had all kinds of cute little-girl clothes.

But she didn’t make progress. At four, Shari was still like a one-year-old and sometimes she regressed after her seizures, and hyper-activity increased for a couple of weeks. She was in preschool, but Sue found out that the teacher was keeping Shari tied in a chair most of the time because she would run out of the room, which didn’t have a door. She couldn’t pay attention to any of the classroom activities. She also had lost the few sounds that had begun earlier as words, and only screamed and made a funny throat sound. I didn’t want to hear about all of the problems with Shari, so I stayed glued to the TV or went hunting and fishing with my friends. I often took Rob along. Sue had a lot of friends who did want to hear about Shari, so she relied on them for support. Life went on that way until we decided to leave Alaska in 1979.

During this time there were some funny things that happened in our life. Shari was sitting in a grocery cart at the check out counter when she picked up an egg carton by the lid. The clerk asked Sue if we had any other kids like Shari. When we moved into our new home Shari decided to go visit the neighbors several blocks away. She was very fast on her tiny feet. When we arrived to pick her up, Shari was carrying a box of Ritz crackers the lady had given her and she was very proud of herself.

When Shari went to the hospital to have her seizure meds changed, she had been up all night tearing her room up. The next day the nurse found a clump of rug yarn, a screw and a nail in Shari’s diaper. The nurse saved them for the doctor and our doctor stated that she knew Shari had “a screw loose.” When the nurse showed them to Sue, she said she had been looking for that nail all day. Of course, my 85-year-old Grandma had a different take on Shari. She thought Shari needed a good spanking because she was just spoiled.

I was able to transfer with my company to Seattle where we would be closer to our parents and Shari’s doctors at Children’s. We chose the Bellevue School District because it had a good reputation for special education, and we bought a house there. Soon everything looked like it was working out well. With me working swing shift, Sue had the kids most of the time by herself, and she soon got burned out. She said she wanted to find a home for Shari in early 1980, and I got mad at her. But she had lost her energy and couldn’t keep up with Shari’s hyperactive behavior, seizures, and dangerous antics. Shari would smear her poop on the walls; she ate a light bulb and put her tongue on a hot skillet and would run out into the street if she got out of the front door. Sue cried a lot and didn’t have anyone to talk to, and I was still working a lot of overtime, which was a sort of escape for me.

Rob was not getting much attention and stayed out of the house most of the time. We just wanted our life to be normal, so later that year Shari went to live at Frances Haddon Morgan Center in Bremerton. It was an institution for autistic children, and Shari was given the diagnosis of autistic behavior with mental retardation. She was only six, and we were devastated to let her go away like that. But we saw her two to three times a month, and she made some progress while we lived like a normal family for two years.

Sue went back to school to become an occupational therapist. Sue talked about bringing Shari home again, even though Rob and I had some misgivings. And then, in 1982 Shari became the first person in Washington to have a CAP waiver and come home from an institution with caregivers coming in to help us take care of her. Of course, the DD advocates thought we were some kind of magicians to accomplish that, but it was only good timing. They soon recruited Sue to be involved in changing the state laws so that children would not have to go away to institutions in the first place. It took a lot of time, but I stayed home after work when Sue had meetings.

She took Wednesdays off for going to Olympia to lobby for special education and developmental disabilities programs. Shari had her caregivers until after dinner most evenings, and Bellevue had sent her to the Experimental Education Unit at the University of Washington for school each day for three years. Rob went through middle and high school in Bellevue, and Sue worked in a nearby school district. So we were able to live a normal life, even though Shari’s needs didn’t change. The times were changing and we helped change the times.

Shari has influenced many people over the years, especially our family and close friends. One of her caregivers became a special education teacher and consults on behavior problems. Another one runs recreation programs for people with disabilities. Shari was even a bridesmaid once in the wedding of one of her caregivers. People don’t easily forget her.

After ten years of the hectic Seattle life and a year after Rob graduated, we wanted a simpler quieter life and decided to move again. Rob didn’t want to live in Eastern Washington and stayed behind in Bellevue. We brought Shari with us and continued to have help with her in our home. All we missed after moving to Selah was the traffic and the fast pace, which we didn’t really miss at all! Again, we chose the school district before we bought our house.

When Shari was 16, I went through a hard time because it finally hit me that I wouldn’t be chasing away her boyfriends, and no girlfriends would be staying over for slumber parties. She wouldn’t be asking to borrow the car or playing in sports. It was the first time I felt that kind of a loss. That’s when the loss of expectations really hit me. This was very hard, as I had no one to talk to about my feelings. If the Father’s Network had been available then, I would have liked to talk with other dads. Sue had worked through these feelings long ago, and I just didn’t feel comfortable talking to her about them. Also, this was a turning point for me as I started to get involved in more aspects of Shari’s life. I started to go to doctor’s appointments, IEP meetings, and even sometimes meetings at DDD. Sue and I were able to talk more about Shari’s needs and our dreams for her.

Now Shari is 28 and lives in a house in Yakima with a gentleman similar to her who returned home from Rainier School in Buckley after over 30 years. They both work at Provident Services and they have staff with them 24 hours a day. Shari comes home often. It’s been an incredible journey, and we couldn’t have hoped for a better outcome. Even though Shari still has seizures and can’t talk, we take her everywhere we go when she’s home. To me she is just right the way she is. She taught me what unconditional love is. Shari came into this world to be a teacher and she is very good at it.