Part of a comment left on this blog contained this sentiment:
Rude is not giving those who care for your kid little notice about your plans for him. Group homes cannot function well on a parent's indecision and impulsiveness. Sorry if this is harsh, but I call things as I see or read them.
Thank you for the apology for being harsh because it is. My son doesn’t live in a group home; he lives in a 15-bed facility that is operated very differently than a 6-person group home. I specifically chose this setting because of some of the additional safety measures and personnel that come from a facility setting versus a group home setting.
Separating emotion from facts in a situation is always troubling for me. It even takes a physical toll on me. I like the administrator of the facility my son lives in, and I have fostered a relationship with this person and admire her on many levels. But she has made errors in the caring of my son. It is difficult for me to point out some of these errors, but I have to. I am criticizing her judgment and her actions, but I sometimes have knowledge she does not.
One recent example was my telling a nurse that my son’s Mic-Key Button feeding tube apparatus was broken in that the one way valve was no longer only one way but allowed stomach contents to stream out. This was due to wear. They didn’t change it out. I told the administrator, and it still wasn’t changed out. The facility’s policy in regard to the length of use of each button is not that of the manufacturer… the manufacturer says change it out at three months and the facility does it at six months. The administrator was genuinely not aware of the manufacturer’s recommendations.
My son was the only child that left at Christmas. I know this because the nurse couldn’t find a necessary form that had to be signed for my taking his meds and her telling me that no child had left to go home in a long time… except mine. I tell the staff my plans for my child in a timely fashion. I am not rude.
The facility, on the other hand, has told me my son was scheduled for appointments and given me the wrong times and dates for which I showed up. The facility has made medication errors, appointment errors, and the administrator told me that she only had about twenty minutes for my son’s IEP because she had another appointment. We rescheduled the IEP. She had never had another parent come to one and none of the other children at the facility are receiving any special services… she was ignorant as to what happens at a typical IEP.
Rude? How do you not be rude sometimes? How do you not offend people who are honestly trying to do a good job but cannot due to inefficiency or lack of experience?
Rude? How about coming in to see your son and find him wearing some other child’s shirt with a picture of Grumpy from Snow White on it? I didn’t act rudely when I simply changed his shirt and put the other in the laundry bin with nothing said.
Rude? How about finding out your son was kept back from school because they thought he was sick when the school’s automated message tells you he has an unexcused absent? Yes, they are supposed to call when he is ill, and, no, they don’t bother to call the school or teacher when he doesn’t attend.
My point is that the comment left did get to me because I am trying so very hard to find a median of how to do what I have to for my son while maintaining a very good relationship with the facility’s staff, and so far, I have done alright.
Perhaps my complaining on my blog is rude of me. It’s true that many disability blogs frustrate me as they are full of complaints, and mine is among them.
My mom started reading cancer boards online when she was diagnosed with cancer. This was before blogs were out there, and the bulletin boards were more in use. She told me how she was tired of one woman’s constant complaining and told her to stop complaining and toughen up, or something along those lines. The other posters came down hard on my mom for posting her sentiment, and my mom felt conflicted. Had she done wrong hurting the woman’s feelings? Was she right to be involved in the conversation even though her perspective was harsh?
My mom was wrong to hurt the woman’s feelings, and I think my mom knew she was wrong because it bothered her, and she brought it up with me to ask my opinion. On the other hand, she was voicing her own feelings about how her own battle was going on that day, and it wasn’t going all that great, so being strong and not whining was important to her.
Here on my blog, I can write, “I didn’t appreciate what you wrote in your comment, but I am glad you are reading and glad you took the time to respond.”
5 comments:
Hi Kelly, I understand your sentiments here. I am also conflicted, stuck between all sorts of impossible emotions. I also struggle with what my blog is to me, wondering if it isn't a good idea to offer up my words for all to read, especially strangers who have the real capacity to misunderstand and write things that even hurt in their harsh and sometimes unfounded assessments. All to say, please don't let a comment prevent you from telling your story.
Yeah...right...wrong.
In a world full of a shitload of grey, it is hard to know the difference, on either side of the tracks.
Bad judgment on the part of many a commenter happens, that much is certain. But certainly bloggers are guilty of it too. In what we write, reveal, all of it.
But you go with your gut. When you fight for what your son needs, and when you write about how you feel about what someone says. Your gut guides you, and even if you later find that it led you astray, you can't argue that most of the time, especially in our seats, it is usually going to steer you down the right road.
While I probably have a capacity to be rude (though I don't necessarily exercise it)that is a bit beyond the norm, and therefore my perspective may be skewed, from what I've read of your blog you seem extremely polite!
Thoughtful and polite.
I like what Ken had to say. We're all doing the best we can trying to juggle life and all that caring for a severely disabled child entails. It's a shitload, that's for sure.
I will share (cause it's all about me, lol) what got to me this season. My ex-husband, who is habitually late and has adult ADHD, blamed me because he missed both his son's birthday and his daughter's duet at Christmas eve services.
Neither was my fault. He was informed of the times of both occasions, but he says it was inconsiderate of me not to give additional reminders to someone known for having difficulty remembering times, etc.
This man is highly educated. He knows how to jot down a reminder note.
All I can say, is I feel ya, sister. Keep on sharing your story!
Blogging (and commenting on blogs) is a lot like driving.
In our cars we are largely anonymous and people do things to other people that they would never do if we encountered them face to face. I'm referring to obnoxious hand gestures and deliberately refusing to let other drivers into the flow of traffic, among other things.
Anonymity makes people bold. It also makes them rude sometimes. The online community is rife with trolls who delight in their ability to cause trouble without any consquences. I think we shouldn't make comments online that we wouldn't make in person.
Any always think twice before clicking "submit."
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