Work

Today is a furloughed day, our second one this year. The organization I work for has tried to make it easier on us by spreading the days over two pay periods, so we won't be 'hit' really badly when we receive our next paycheck. But no matter how hard they try to make all these reductions easier on us, we definitely feel them. Like so many others all over the country, I have made changes in my lifestyle, which wasn't extravagant to begin with. In the office we bring lunch to work, instead of buying something. The positive side of this is that we share some wonderful meals. Much of the office talk revolves around food, and recipe sharing. My latte consumption has reduced drastically, and when I do buy a latte it is from MacDonalds!!! This was my first purchase ever at a MacDonalds. I went to the one closest to our office, in San Pablo. I ordered at the drive through and drove up to pay. The young woman at the window was all smiles. "Hola," she smiled, and continued in spanish "don't you recognize me?" But I did. I had worked with her son about three years previously. She told me they are all well and said she is expecting her third child in a few weeks', that is why she looks so fat, she said.

"Come and visit" she said, as I drove off.

Pleasant little surprises like this highlight my days, which are definitely becoming increasingly difficult. It is hard for children to qualify for services. Some services, like feeding specialists, have to be supplied, or denied by the child's insurance. If they are denied, then maybe Regional Center will cover them. I am working with a little boy whom I saw last year. At that time he also had a feeding specialist and a physical therapist (PT) in the home. We all came once a week to work with him, and instruct his family who were wonderful in following through. As a result, he progressed so well that he began attending our program for three hours a day. He obviously loved coming to 'school,'(his 'escuela') waiting for the bus everyday, waving goodbye to his parents who wiped their tears, and happily participating in the activities, playing on the gym and in the go-cars. He began eating by mouth (he is on a g-tube) and drinking from his bottle. Unfortunately, after some really good months, he became very ill with the RSV virus and was hospitalized for almost a month. They had to put him into a medically induced coma and he was placed on a ventilator. He came back home, but sadly he has totally regressed. I can see him until he turns three, and the physical therapist can come, but the feeding specialist can no longer come to his home. His mother can take him to see a specialist at Childrens Hospital once a month, to get some advice. This child needs to be worked with constantly, and the fact that his mother has to take him out of the house and into a hospital environment only puts him at increasing risk of being exposed.

Another little fellow I work with has quadriplegic cerebral palsy and recquires a specially adapted headrest for his wheelchair, which is on order. However, this is not covered by insurance and his parents really cannot some up with $160.

Another boy who has profound hearing loss in one ear, and some loss in his other ear would benefit from a conductive hearing aid. He would hear, and learn to speak, however, this device is considered "cosmetic." It costs $6,000. Everyone is busy finding out about where the parents can find devices, or used equipment, which is not readily available, if at all.

These things are making work more trying, so furloughed days are, in a way, welcome, if only they didn't impose severe limitations on us as well.