Want to connect with other special needs families? Come join the conversation at December 2, 2009
Lost Privacy
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.
Deborah can be found writing here at 5MFSN every Wednesday, and can also be found at Pipecleaner Dreams.
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Comments on Lost Privacy »
staying afloat @ 8:19 pm
I don't have a home health aide, but we had to get five-day-a-week cleaning help to keep up with my autistic son's mess and my lack of time or energy to keep up. She was everywhere, all the time. She watched how I parented all my kids, and judged me on my son, who she never quite understood.
Example: She noticed he'd been pulling the couch covers off regularly and she had to put them back on. So she told me it wasn't good and I should tell him to stop. Yeah, I'll try that. Because that's not why you're here or anything. And mostly I hated having her there when I just wanted to be by myself. But I needed her. So yeah, I sort of get it.
Lisa @ 9:26 pm
I have two home workers that spit 16hrs between them. yes..there is a significant loss of privacy..however..our worker..our rock..http://mylifemommytoalot.blogspot.com/2009/12/two-for-twos-day-why-i-love-elissa.html
is so awesome.
..
now that being said I have had a few terrible workers.(for another child who is no longer with us).who like the above commenter were critical..telling me what I should do. Young workers who couldn't handle our former foster child. Lazy workers..who did NOTHING.
It's tough.
Trish @ 10:43 pm
I always appreciated how careful the therapists from Early Intervention were to not even go past the living room without my okay.
I do have to say I am glad his TSS only has school hours now though, as I was a bit tired of someone being in the house so often. I'm thankful that we don't deal with that need on the medical side of things as well.
Stacy @ 1:13 am
As someone on the other side of this relationship (I work in Early Intervention and do respite/habilitation on the side), the privacy issue is something I try to be very mindful of whenever I work with a family. I've had more than one parent tell me that having extra people in and out of their house and life is one of the most difficult parts of having a child with special needs. I try to keep in mind that I'm a guest in their house, and to act accordingly, while also trying to put parents at ease and let them know I'm not judging their dishes or clutter (heaven knows I have enough of both at my house).
Kristy @ 7:32 am
It's true that when you have a special needs child your life becomes a open book for others, those who might like you and those who don't.
Many years ago someone unknown reported me with child abuse saying our handicapped son was not eating well or sleeping well.
They were lies as he has never had a eating or sleeping problem.
His doctor said I, as well as other moms of special needs children needed a medal of honor, not a visit from DSS.
Anyway, thought I would share this with you.
I hope none of you have been falsely accused of child abuse simply because you have a special needs child.
Deborah @ 10:05 am
Thank you all for your comments. Stacy, I wish more home workers were like you! I do have one aide who is like a part of the family, and I have no issues with privacy loss and her. But, there have been workers in the past who made me wonder what they did when I left the house.
And Trish, I know just what you mean. Sometimes I just want alone time, but it is hard to come by when you need in-home support. I have taken days off from work while my children were in school just so I could be alone in my house for a few hours.
And Kristy, been there with you. I, too, was falsely accused and had the dreaded visit from DSS. You would think that the folks who worked as aides for our children would understand issues relating to their special needs. But wait, that would mean they were well-trained – something that from time to time has been an issue for me.
Sarah @ 10:19 am
Geez you reminded me of 19 years ago when I had a set of premature babies on oxygen. The home health nurse would come every week to check them and I felt obsessed to pick up and make things look neat although I was totally exhausted. What was I thinking???
Becky Irwin @ 11:30 am
I so agree with all your comments. I am mom of 16 yr old with Cerebral Palsy. Feel the same way. But when you do get that "one" special care provider it is heaven.
Vanessa Infanzon @ 12:49 pm
You were right on with this post. I look forward to the summers when the providers see my son at camp – that's my break from making sure everything is at least picked up – nothing I can do about those darn dishes though. Glad to know others feel the same way I do.
Azaera @ 7:57 pm
As of yet we only have Skyler's OT who comes to our home and she is just wonderful. I would take her over anyone anyday. When she visits she always assures us that her house is worse when we say we have a mess to tidy. She doesn't go anywhere but the living room unless we invite her to another area. She asks if it's okay to hold Skyler, even though she knows I have no problem with her picking him up. She is just fabulous. But personally I think she is a very special kind of person and we are so lucky to have her. I am not looking forward to meeting the people who have little training and are judgmental about the way I raise my son or keep my home. I hope I never have to deal with anyone like that. Though I wouldn't count on it..