Monday, November 10, 2008

Do Not Disturb

Today’s post is dedicated to Lynnette. She knows why…

I really had no idea how my life was going to be turned upside down when I adopted a child with significant disabilities. I thought I did, but I was wrong.

When I first brought Ashley home, my only parenting experience had come from raising my birth son as a single parent for 5 years. And, he was a pretty easy child to raise. He had some medical issues, but absolutely nothing to compare to Ashley’s medical issues. And, he was typically developing, if not advanced. My interactions with school were typical – my interactions with medical folks were typical – my battles with insurance were few – and my life was my own. All that changed the day I brought Ashley home.

As parents of a child with significant disabilities, our lives become very open books. Doctors and nurses ask very personal questions, and they ask them over and over again. School systems demand answers and test results and access to medical records. Even our friends, at least those brazen enough, ask very personal questions about our children and about our feelings and belief systems. We usually expect those things to some degree. What isn’t usually expected, or known in the beginning, is how we will lose all semblance of privacy in our own homes.

Almost all of us of who have children with significant issues will have to have in-home help at some point. That help may come in the form of nurses and/or personal care aides, and along with those people come the managers – the service facilitators who must visit periodically to ‘check up’ on things. And since all those service providers are seldom paid what they are worth, there is a lot of turnover. And that turnover means there is a constant stream of strangers into our homes.

These strangers hear our phone answering machine messages; they know when we leave dirty dishes in the sink; they hear us yell at our other children; they put away medical supplies and in the process, see that our closets and drawers are not always neat; while working in our kitchens, they see the beer in the refrigerator or the vodka in the cabinet; they know if we haven’t folded the laundry in the dryer, and in an effort to help, they fold not just our child’s clothes, but our clothes also. Just for the record, I don’t want other people folding my underwear.

They know what kind of books and magazines we read. They know the types of movies we rent. They know our tastes in food, and may even inadvertently uncover the hidden stash of candy. They may accept packages delivered for us, and in an attempt to be helpful, may open them and view the contents. They may bring our mail into the house, seeing just how many and what types of bills we receive.

In short, they are privy to almost every single aspect of our lives – not just the life of our child they are hired to assist. And I wonder, does it have to be this way? Do we have to give up our privacy just for our children to receive the services they need? Am I out in left field here, or do others have similar concerns? I would love to hear your thoughts.


Anonymous said...

We have never qualified in our state for any type of in home care or any help period. We have had to hire any help on our own.

I used to be someone who worked in peoples homes doing respite care and caring for children with various disabilities. I saw the other side of it. Parents or caregivers trying to balance constant turn over and endless meetings and red tape for funing and qualifying.

I liked my job but I think it made me feel okay about not having the agencies help in our home. I hated the idea of the red tape and after going through the adoption process I was ready to have a more private home life.

I saw what families went through when I had to move on and it was never easy. I could not imagine having to go through that with M. So, I can imagine at least that it is very helpful and in some cases families would be in major trouble without the help and yet very difficult and possibly invasive at times.

Stacy said...

I work in early intervention (and do habilitation and respite), so I'm on the other side of your dilemma, but I do feel the same way. I try to be respectful of the fact that I'm in someone else's house getting a glimpse of their life, but there are times when I can tell people are uncomfortable with me there.