FCSN Plays an Integral Part of My Son’s Life

Written and Shared at 2022 FCSN Gala by David Lewis, Parent

In March 2020, Bay Area counties instituted Shelter-in-Place orders due to the arrival of the COVID pandemic, and FCSN was forced to suspend in-person programs. This surely created enormous problems for the staff and volunteers who have been keeping this wonderful organization afloat under what are even in the best of times, challenging circumstances. But it also created a crisis for our son Jon and all of the clients and their families who have been relying on FCSN services.

Our own family perhaps had a bit of a head start in planning for dealing with the pandemic. My field of work is risk assessment of biomedical issues, and it was clear to me by January of 2020 that there was a substantial risk a serious pandemic would reach the Bay Area, and by February it was a matter of not if but when. On December 31, 2019, the Daily Mail published an article describing 27 cases of SARS-like illness in Wuhan, China. As a result of those early reports, a colleague of mine, a leading virus scientist in New York City, immediately bought N95 masks and advised others to do the same. SARS was almost unknown to most Americans at that time, but for people like my wife Irene from Asian countries that were afflicted by the SARS epidemic of twenty years ago, this was something to take very seriously. Even worse, since the new SARS-COVID virus spread more easily and before symptoms were even present, the threat of a world-wide pandemic was soon clear.

By the time the pandemic arrived in California, we were stocked up with masks, gloves, thermometers, oxygen sensors, and air filters, though some were given to others, including local hospitals, when the extent of the shortages of these supplies became clear. We bought an additional freezer to stock up on foods to minimize trips to stores and signed up for a food delivery service. It was the beginning of a period of isolation that went from days, to weeks, to months, to years. The isolation was difficult for the whole family, but for Jon it was particularly challenging, as his days at FCSN were his main connection to the outside world. He missed his friends and teachers and the structure that the program gave to his life.

Shortly after the shelter-in-place order, FCSN had put together an innovative remote program over Zoom. This seemed to work well for many clients, though Jon had difficulty adapting to it. Jon usually participated in the morning Zoom get-together and perhaps one class each week, and then most mornings he and I went out to a place where we could walk around and talk. Jon developed several favorite spots that we would alternate as destinations according to a plan he chose. There was a nearby park, a school (closed for the duration), the grounds of a church, and a second park.

Jon volunteering at Campbell Park

Making the best of a bad situation, we worked hard on developing independent living skills. So Jon could gradually take control over his daily life, making meals, doing laundry, cleaning, making shopping lists, doing COVID tests, and so forth. After the COVID vaccines became available, we started adding trips to grocery stores, bookstores, and libraries.

Last summer, Jon was thrilled when it was decided to reopen the FCSN day program at the South Bay center for two days a week. We continued with our daily outings and life skill practice on the other days. And on May 2 of this year, when FCSN was able to reopen for a full five-day program, Jon was ready to go. Jon couldn’t have been happier to be back with his friends and teachers.

In July, we put all of Jon’s progress to the test when we needed to travel to Taiwan for four weeks, and Jon decided to stay in the family home so he could continue to attend the FCSN day program. While his sister Annie did come to stay at the house with him, Jon took care of his daily routine with only minimal assistance. Jon got up, made his breakfast, got ready and met the VTA van outside, all before his sister was even up for the day. After returning from the program, Jon let himself in the house, made his own dinner, and in the evenings, did his own laundry and entertained himself, watching the evening news, reading books, and watching videos. I did stay in close touch, however, using the video chat features of a device called Alexa Show, checking up with Jon every morning and several times in the afternoon and evening.

Jon having fun at FCSN Picnic Day

This was actually the first time Jon and I had been apart for even a full day in 25 years, so this was both a dramatic leap of faith and a leap forward. I still worry about the future for Jon, but less than before, seeing not only how well he can take care of himself, but also how rewarding it is for him to realize he can take care of himself. Nevertheless, FCSN will be an important and integral part of Jon’s life for the foreseeable future. To make sure FCSN does have a long future, it is important we all support its efforts and ongoing funding needs in every way we can.

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