Thursday, September 23, 2010

Do Not Disturb

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.


  1. The almost complete loss of privacy is, I think, one of the hardest parts of having a child with complex needs. We watch what we leave out around the house. We have had issues about how (and whether) we celebrate certain religious holidays.
    My toddler's teacher wanted details of his birth (a very early emergency c-section), along with details of his treatment in those first few weeks....even though she had no medical knowledge, no NICU knowledge, and no real understanding of the impact of any of this.
    One thing I worry about is that my child has no privacy either. Every detail of this is recorded in his file at school and in dozens of doctors offices. His nurses go to doctors appointments, and hear every detail. When he's older, will he care? I don't know....but I guess we'll find out, because there's been no other option.

  2. You are not alone in this feeling of an invasion of privacy, although I can't say it's bothered me if the people that used to come in our home (a parade of therapists/case managers) were people I was friend with - if we connected some how, even in a small way, or I personally liked them, it really didn't bother me.
    That said, our life is an open book and a necessary evil in the life we have of raising two kids who need a lot of help.

  3. Very well said. I feel exactly the same. I am sick of people constantly in my house.

  4. Ditto! Just for the record, the fact that I have people folding a lot of our laundry, I make it a habit to buy myself new underwear at least every 6 months! :) The silver lining in the invasion of privacy.

  5. I share your concerns but have no answers. If anyone has creative solutions to offer, I'm interested in hearing them. Though I've been blessed with wonderful help in the past, at this point I'm taking care of my severely handicapped daughter alone, full time, and it's of course quite untenable and very tiring, and can be oppressive and depressing-----and yet there is also a sense of privacy, peace and flexibility (even a form of freedom, in the midst of total lack of freedom) that is a relief.

  6. We live in autism world, and I can't describe the relief I felt when I realised in-home ABA therapy was not going to work for my son.
    I NEED some control, and my home and privacy give me that.
    I am seriously impressed with your ability to have your underwear handled by anyone other than your spouse or mother. My underwear is so not worthy.

  7. This sucks. It really does. I am not part of your world, but in the world of cancer, we struggle with similar issues as we have in-home care for ourselves, and kind friends and family members stopping by to help out. I appreciate it, I really do -- but I'm not even happy about my mother-in-law washing and folding my underwear!
    So yes, it sucks. I hear you, and I can only imagine how difficult it must be to have so many people coming through your house to help.
    Good luck --
    Susan (friend of @stimey)

  8. As an OT in early intervention, I deliver all of my services in the "natural environment" as mandated. I've been around long enough (26 years working with children) to see the changes from clinic based to home based. There is a part of me that loves the home based. I get a better idea of the general environment of the home in which the child lives. I don't judge, but it's good to know that I shouldn't be suggesting sitting down at the table to eat a meal if the family doesn't have a table, and doesn't feel the need to have one. I feel like it helps me provide a more realistic approach to therapy. While I try to be respectful and not be one of the offenders mentioned in the post-- I do realize, that my mere presence is a total invasion to your home and life. Depending upon the child's abilities, your concerns and the outcomes for the child, "natural environments" could be anywhere. I have met with families for their OT session at the zoo, playgrounds, museums, Walmart, McDonald's, doctor's waiting rooms (when another family member had an appointment) and in a family court waiting room. (Okay, I had a REALLY good relationship with the last two families). Maybe some of you could look at therapy in other places, even if it were every now and then. I know that may not be feasible for everyone, but it's an idea.

  9. Thank you - that was very well written and so true. It is a double edged sword. I have come almost into full acceptance of my daughter and all of her needs, but I haven't fully accepted all of the people that help her. I know that's what I need to do to be at peace with it, but sometimes I just want to be alone, and not have my every move watched by someone else. Someone who is not in my family, but whom I need for my family to function.

  10. If you don't want someone folding your laundry, ask them not to do it. There are ways to discuss these items with people that work with our children. Let them know that you only wish for them to be in the rooms with your child, have things laid out for them to use daily or make a special place in the home for them to access the items and materials used with your child; such as a closet, cabinet, or even a drawer . If it is too difficult to have them in various places in your home, set boundaries. However be prepared that you must take on certain tasks to eliminate that privacy issue.
    All parents have to deal with this issue by having even a babysitter in your home or someone more significant such as a caregiver or a nurse, (typically a teenage babysitter would invade your personal space more than a professional). I am more comfortable having someone in my home that helps me with the laundry and can laugh when the day was so crazy that I left a bed unmade or breakfast dishes in the sink than someone that I feel I need to be on "pins and needles" with based on typical household chores.
    I feel that having in home care and support is a blessing. The individuals that are willing to not only take on a task and guidelines set by the job itself but to also take on the "rules" of your home, are amazing people. We should be thankful for having someone willing and able to help us raise our children, especially if an agency or waver maybe signing their paychecks.
    I do not want this to be harsh or seem as though I am not understanding, but it is reality and one readers opinion.