Thursday, January 06, 2011

Living on the Edge with Disabled Children: When Health Issues Threaten the Family

It may not seem like a big deal, but to this family and others like him, this is a huge issue. Sam Parker is a severely disabled eight year old with cerebral palsy, seizures, on gtube feeds and is blind. He’s also a 75 pound quadriplegic and needs to be carried up to bed every night. When the father had heart surgery for a life threatening condition, the father could no longer carry the 75 pound boy up the stairs. At 75 pounds, the son was too heavy for the mother to carry. After the father’s heart surgery, a request was put out to the local high school and the captain of the high school football team volunteered to help the family out by carrying the boy up the stairs to bed at night. The boy spends his day on a cot outside the family kitchen and Rudy Favard, a high school student stops by three to five nights a week to carry Sam up the stairs. Rudy states that it’s not a “big deal” but to families like the Parkers, issues like this are a big deal and the fact that Rudy stops by to carry Sam up the stairs, enables their family to stay together.

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.

Thanks to people like Rudy Favard, kids like Sam Parker get to stay in their home and they get to make a good friend in the process.


Becca said...

Dream Mom, is there a specific reason you have not pursued a track lift system for Dear Son? It could at the very least go from his bed to the rocker and back - and doesn't take much strength at all compared to a mobile (Hoyer type) hoist.

Track lifts on tall legs are called gantry hoists, I had one for a few years before I got my ceiling track fitted as there was not room in my bedroom to use a wheeled lift safely. Having used both types with a variety of caregivers including 2 who are very petite and once someone with broken ribs (!!!), I can say with confidence that a track lift of any type - on legs, or bolted to the walls or ceiling - is SO MUCH easier and quicker, maybe twice or three times as fast as a transfer with a mobile hoist.

Check it out - it'll change your and Dear Son's life.

Dream Mom said...

I live in an apartment so my options are pretty limited right now. Thanks for the option.

Becca said...

I understand - my home (in the UK) is rented too.

My good buddies at Hill-Rom have some track lifts that are not a permanent modification to the building - I watched one of their guys put one up from scratch in about 10 minutes, once.

Here are the sort of things I mean: Liko/Hill-Rom link. I personally have used the UK versions of the FreeStand and FreeSpan Straight Rail lifts - for your reference, I have a progressive genetic condition and am currently completely reliant on others or technology for all mobility. I can move my arms and legs a little bit but cannot weight bear at all and can only sit partially upright in adaptive seating.

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