This story however is one that is repeated all throughout the country. It’s no secret that when kids get too large for parents and caregivers to care for, often they are put into homes. While that may be a viable solution, it’s really sad to think that because you are disabled, you are at risk for this. Yes, there are certainly alternatives, such as a hoyer lift however that too takes a fair amount of muscle. I know moving Dear Son can be exhausting, especially when I am tired. And while I call Dear Son a child, he is in fact, a nineteen year old six foot plus man that weighs a little under 200 pounds. That can be hard to maneuver some days.
In 2007, I needed back surgery for some long standing back issues that had rendered me unable to walk more than 20 feet. I was in severe pain most of the time and unable to lie down to sleep. As it turns out, in addition to my longstanding back issues, I had also suffered three herniated disks from lifting my Dear Son. Back then, my 16 year old son was only 165 pounds or so and I was lifting him all day. In order to have my back surgery, I needed to put him into a home for two weeks, so they could take care of him. Luckily, I lived only a three blocks or so from the only respite/hospital care facility in the state for disabled children. They take only a few children at a time, say 10 or so, so I was lucky. It’s located in a large ranch home on a few acres and is about as close to utopia that you get for these children. Still, I worried going into the surgery about the “what ifs”…what if the surgery doesn’t work and I can’t take care of him. I was sick to death with worry. I visited Dear Son the day after my surgery, walking very slowly. Within a few days or so, I tried transitioning him from the wheelchair to the rocker, just days after my surgery. I wanted to make sure I could still do it; if I couldn’t I was afraid some agency would remove him from our house. It made recovery tough. I couldn’t pick up anything off the floor and yet in two weeks I needed to be able to lift his hips and turn him over at night, put the sling underneath his body and lift him up with the hoyer lift. Luckily, my surgery was a success and I can move him from point A to point B with the hoyer lift.
As the mother of a severely disabled child, it’s really wonderful to hear about such stories. Just recently, I received a newsletter with the results from my state regarding disabled children that are in need of services. What was most striking to me was the sheer number of disabled chldren who had caregivers that needed help or were at risk to go into a home because the family couldn't care for them any longer or the lone caregiver didn't want to care for them any longer (they didn't state why). Caring for children like Dear Son or Sam Parker is really hard. I worry every day that something may happen where I can no longer care for Dear Son so this story was really exciting to read. It is often hard to ask for help and what seems like a simple task to some, like for the football captain to carry the young child upstairs, is such a huge deal for families like the Parker's since it allows them to keep their family unit intact.