Comments on: Lost Privacy

By: Azaera

Azaera — Fri, 04 Dec 2009 23:57:15 +0000

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..

By: Vanessa Infanzon

Vanessa Infanzon — Thu, 03 Dec 2009 16:49:12 +0000

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.

By: Becky Irwin

Becky Irwin — Thu, 03 Dec 2009 15:30:01 +0000

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.

By: Sarah

Sarah — Thu, 03 Dec 2009 14:19:49 +0000

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???

By: Deborah

Deborah — Thu, 03 Dec 2009 14:05:13 +0000

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.

By: Kristy

Kristy — Thu, 03 Dec 2009 11:32:25 +0000

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.

By: Stacy

Stacy — Thu, 03 Dec 2009 05:13:01 +0000

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).

By: Trish

Trish — Thu, 03 Dec 2009 02:43:51 +0000

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.

By: Lisa

Lisa — Thu, 03 Dec 2009 01:26:21 +0000

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.

By: staying afloat

staying afloat — Thu, 03 Dec 2009 00:19:42 +0000

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.