Tuesday, June 14, 2011

Explanation on the Home Health Aide Thing

In yesterday's episode of Blogzilly, there was a comment left by an Anonymous person in response to my post that said the following:

'I thought you had a home health care aide, so its not solely on your shoulders. I can't get one myself.'

For some reason, this comment really got under my skin. So much so that my response was rather explosive. I've since had some time to cool off a little, and I wanted to go back to it and figure out why I got so heated and also clarify the Home Health Aide situation overall.

After all, this blog should probably be called Dr. Blogzilly, cause this is where I work out all my shit.

First let's deal with why I got so angry. There are a couple of possibilities here, of which all, some or none could be the heart of the matter...I'm just trying to figure it out myself.

There is timing to consider. It was the first thing I looked at in the morning. No coffee had kicked in, and I'm in a terrible mood in the morning under normal circumstances, and circumstances right now are far from normal. Jen and Carter are both gone and I am here, in the house alone, watching Bennett. So everything is 'off' for me. All my patterns, my habits, my biorhythms...everything.

Then there is this House Bill 153 for the 2012-2013 Ohio State Budget that I went on and on about yesterday that has me in a foul, rotten mood. No need to go over that again. I'm pissed off about it, plain and simple.

This all explains my mental state, but not my reaction to the statement.

I believe I reacted to the statement because I felt it suggested that because I had access to a Home Health Care Aide, that I didn't have to worry as much about the things I was expressing in that particular post. That since I had this 'extra help', the implication was that I should, I don't know how to put this exactly, perhaps be less angry about his services being cut because at least I still had help so I didn't have to shoulder as much burden as other people in the same situation might have to who did not have access to a Home Health Care aide would?

Like I said...I'm trying to figure it out myself. Because later on, when I went back to re-read the comment and the post itself, I am not exactly even sure what the commenter was commenting on. Because there are, as my usual tangenty nature just creates, multiple subjects.

So I guess that's why I was pissed, it's as good a theory as I can come up with. I resented the inference, if that's what it was. Not sure that's what it was NOW, with a clear, coffee-filled head and some time away from the initial reading, but what's done is done.

I probably over-reacted to it, but that doesn't mean I do not still think it is a very poorly-conceived comment and one that I guarantee you would NOT have been made by someone using an actual NAME. Anonymity provides people with Internet Kevlar, giving some people a certain sense of freedom to say things they might not normally say to your face or if you know who it is who is doing the talking.

And so...I've simply changed my settings to wipe away the ability for anyone to leave a comment that is not a Registered User. Problem solved. I just hate that shit.

Nut up or shut up.

I'm always one for open discussion, but if you have to hide behind anonymity in order to actually say something to somebody? Not only do I not really want you to comment? I don't want you READING here.

Go away. You don't belong. Period.

I don't have the physical ability to stop you...but our philosophies are so totally opposed as human beings and this blog is SO not your cup of tea, because the truth is I have nothing to offer you...NOTHING. Nothing of value, anyway. In the end, you will only end up feeling like you've wasted you're time. That's cause you ARE wasting it. You are reading the wrong blog.

That being said...let me clarify the Home Health Care Aide thing for the record. And I just want to use the term Home Health Aide, even though it might be incorrect, just cause it's easier to write, easier to say, and it's my fuckin' blog.

I can't even remember when Bennett had his first Home Health Aide, I'd have to go back and dig through the records, but her name was Crystal and she was around for a while. I'm not sure if it was an entire year, but she started at some point in 2009 and I can recall winter months and summer months so I know there was a long stretch of time. She was originally from the Republic of Ghana in West Africa, moved to America at some point with her family and she left this job here to go to Nursing School, too far away to actually remain here working with Bennett so we had to start looking for a new HHA.

I liked Crystal, for the record. She was punctual, she rarely EVER called in sick, she was open to lots of stuff, she was a lot less robotic that what I would eventually learn was 'the norm', and she was very polite. Best of all, she loved...LOVED, my kids and it broke her heart when she had to leave. Did she phone it in a little at the end? Of course, that's human nature. WHO WOULDN'T? I don't really blame her for it at all. She still keeps in touch.

After that, the agency that handled Crystal kept trying to find someone to fill our need. Not an easy task. Here's why. No one really wants the job.

WHAT!?! Why wouldn't someone want to be a Home Health Aide to my sweet little boy?

Because we only really need someone from around 5-10 PM on weeknights or on the weekends. Who the HELL wants hours like that when you are a Home Health Aide? You want to work FULL 8-12 HOUR SHIFTS, and preferably with older people who require a lot less actual work, who tend to maybe like to sit there and watch TV and don't require the...let's say 'effort', that a 3 1/2 year takes.

I totally get it. I understand it.

I don't LIKE it. But I get it.

So finding someone for this particular need hasn't been easy. They send someone over after a while. Much older woman. I believe I told that story in some blog entry. but it was before I started labeling the Home Health Aide blogs, but essentially this woman had no cell phone and was driving a car that had 2 donuts on it and looked like it was going to die any day now. She lived 40 minutes away, showed up 3 hours late the first night because she could not find the house and she simply was not the right fit.

When I asked the agency to call her the next day and ask her not to come back? Guess what? No HOME phone either. The agency asked me to have her call THEM when she got there and they'd tell her to leave. I said 'Um...no. I'm doing that to someone in my home.' So I had to essentially fire her MYSELF as she cried in my kitchen.

Few months later. They find someone else. Younger girl. Probably mid-20's. This one I wrote about as well, and can easily find it cause this is when I started tagging the Home Health Aide entries. Of course, I didn't write all that much about her, since she lasted less than a week.

Since that time, the agency has found NO ONE. Once a week, Jennifer's Mom helps with Bennett in the evening, and we said she should go to the agency, since she is retired, and go through the certification process and get paid to do this. Might as well, since the budget is there and I was told by someone in the government that if I don't USE that money I stand the risk of LOSING the money. Isn't that the most fucked up thing you have ever heard? That reminds me of another very fucked up budgetary thing, but I'll save it for another time. (Though you know me, I'll forget.)

So Bennett's Grandmother, currently, is Bennett's only HHA, once a week. Apparently, since the HHA thing is so VERY fucked up everywhere, I understand this is a very, VERY common occurrence.

A person from Bennett's school approached us about the possibility of working some hours with Bennett at home and taking some of the Home Health Aide responsibility. I was SUPER jazzed about this one. Probably more than anything else in a LONG time. This was like getting GOLD in my Christmas Stocking...a person who utilized ABA, and WORKS with Bennett ALREADY??? Are you kidding?

I thought I'd died and gone to Heaven.

Nope. I'd actually gone to the other place.

This one shit the bed too.

And it was, by far, the biggest let-down of all of them. Because I had the highest expectations. I wanted to LEARN from her. I wanted to use it as an opportunity to gain some insight into how things work in that type of therapy technique. I barely even scratched the surface because the few times she was here I only got to observe maybe twice, the other couple I was too busy and then, like Keyser Söze...WHOOSH...she was gone.

And here is the real rub of it. Twofold. Get ready.

First, Jen goes into Bennett's school the following Monday after that whole Spring Break debacle and the woman just nonchalantly says 'Sorry I couldn't finish out the week, I just got really sick.' I almost hit the ceiling.

But then, THEN she asked when Jen wanted her to come back out. I heard this, I went through the ceiling, up into the atmosphere, exploded into tiny microscopic particles and had to be re-assembled by somebody named Oscar Goldman.

At first I said NOFUCKINWAY, but Jen reminded me that we had nobody else. I said that doesn't mean that we have to accept something inferior. But she was exhausted, I was exhausted, and I could tell she really just needed to believe. I just hated to know that all this was doing was postponing the inevitable and I knew it, I knew it as strongly as I knew ANYTHING.

Jen was simply too tired maybe to see it, I don't know, but Christ I hated having to say 'OK' knowing that eventually my wife was not only going to get bitch-slapped AGAIN by this person who I knew would prove to be un-reliable but that inevitably I would not be able to resist, as much as I love her, and as much as I knew I shouldn't and as much as I wanted so desperately NOT to do it, I knew I would NOT be able to keep the words 'I told you' from coming out of my mouth when the time came.

The time came.

But she gave me permission to say it. So I did. :)

And I still see this woman, even now, dropping Bennett off at school this week. I'm very pleasant to her, she's pleasant to me, and she is still great with Bennett. Personally? I think she just bit off more than she could chew, could not admit it and a piece or two of backbone was missing when it came time to actually stepping up to discussing it with us.

So that's the Home Health Aide situation, in a rather large nutshell. We still don't really have one. Now...Crystal is off of school this summer. She called a while back to check in on Bennett. Was shocked we had no aide. Asked if we wanted her to come work a little.


So the summer will be a little easier. IF she can...word has it that even THAT stuff is being cut, we just don't know by how much yet.

But for the Official Record. Any burdens that are shouldered regarding my son, are shouldered by myself and my wife...alone. We are his parents. That is are responsibility, and we take that responsibility gladly, because we love both of our sons. No one else is responsible for his overall well-being but Jennifer and I.


Do we receive help from time to time? Yes, we do. As does everyone else, with both typical and non-typical children. And everyone, and I do mean EVERYONE, receives different amounts of help, whether it be from family, friends, the government, their local church, or whatever other sources they find to tap into.

You do not begrudge someone for the help that they receive. As a member of the human community, it is your responsibility to offer MORE help, and to reach out for help when you need it. As a species, it is our responsibility to HELP EACH OTHER. Resenting someone for receiving more help than you, for having more money than you, or a bigger car than you...that's all very dangerous territory.

When I used to carry my Catholic card with absolute pride, I would say that it is the most chilling thought to me when I think how much simpler, how much easier, how much better, life on this planet would and should be, if we took a FEW lessons from Christ and tried to practice them in how we treat each other.

[Just a few. Don't get all carried away now, Richard. :)]

When you care about someone, when you take that next step and enter their life, become a part of their world, you should want them to succeed. You should feel good about positive things that happen for them. You should celebrate their victories. You should commiserate with them in their defeats.

You should not suggest that they should perceive their burden as lighter than it is because they have help and then point out that they have something you do not. It just isn't how it is done. ESPECIALLY when the truth is...we really haven't HAD that help for a really, really long time.

OK, I believe my rant is over.

Even for me...this was long.



  1. This comment has been removed by the author.

  2. i usually post anonymous,but i didnt post that one..i am very proud of the way you handle...well what you have to handle..so very proud..and you shouldnt answer to anyone..whoever posted that post just doesnt know.,dont let other people take you out of your character...and i love your blog ..i read every one!!

  3. It was an unfortunate comment, I interpreted it the same way you did. I think ill-willed anonymous commenters deserve a little manhandling. I'm so sorry you didn't have much luck with the home health aids. I'll keep my fingers crossed that Crystal will be able to work with Bennett in the summer.

  4. way too tired to comment, but just wanted you to know that i still luv you. incredible posts, photos and commentary as always. lights out, everyone's home:)

  5. Amen....to what you said about anonymous and anonymous commenter's.....I've had my fair share of dealing with those and getting pissed off....so I know the feeling and it sucks to let an "anonymous" reader get under your skin....but all well said on your part.

    As far as an aid.....don't have much to add...never had an "appointed" one and I'll have to perform a circus act I'm sure, to ever get one....but you already know all my struggles with state crap....so we use whatever resources we can....family....to help on occasion.

    You guys are doing amazing with both boys....but I know how all the pressures can make you feel like your gonna crack....we all feel it as it comes in waves....

    Sorry so long....just sending my support!

    and I am still completely impressed with your single parenting this week.....hey...your surviving! :)

  6. You're so lucky.


    Years ago, I got a certain amount of money from a friend of a friend and was told to spend it on childcare for Sophie and un-reimbursed medical expenses. It was a beautiful thing while it lasted. Nonetheless, when I told a very close relative about it, he said, "Must be nice."

    Anonymous commenters are awful. But watch out because sometimes they "name" themselves. I have a "Dave" that visits quite often.

  7. I'm a BIG believer in moderation. Having had my fair share of spiteful comments sometimes cloaked in anonymity sometimes cloaked in "I have it way worse than you - if only we could all be so lucky as you" self righteousness. Both kinds boil my blood.

    You painted the best picture of what our life is like that I've ever heard with the "sinking boat" comment. I'm still intending to create a post out of. Someday. When I have the energy. How do you fully transfer the knowledge...complete to the core knowledge...of what it means to parent Bennett (or Trevy)? I'm not sure than anything other than full immersion into our life would do the job. Even those that work with our kids at school...or as HHAs...they get to punch out. We don't. And when you have a child that requires 100% attention 100% of the time...


    I like to say that parents only survive the baby years because the babies GROW UP!

    Oh...and we've had our fair share of HHA duds. I finally hired my mom. She HATED the idea of receiving money for something she does because she loves her grandson and daughter. I reminded her that if we don't use the hours we lose the hours. And for now that's working. But our state is in the midst of a budget crisis too. Every day I wonder if this will be the last month. And how the heck will we survive. Some day I'm all brave and think "God gave us to each other...I can totally manage alone". Only to have the full on Trevy weekend roll around and crash me back to reality. :)


    I get ya, hon. xoxo


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  9. Someone at work asked me what time I was free on a Friday. I told them, "I have respite (HHA) from 5 to 10." Another coworker overheard and goes, "Wow. Five hours. I wish I had five hours all to myself." I simply said, "I guess that's one upside to having a kid with special needs." I mean, seriously. SERIOUSLY? Go crawl in a hole, lady.

    In Iowa, and I don't know if this is true in other states, you can choose to take the money that an agency would use to hire someone to work in your home and hire someone yourself. Of course we've seen how well that can work out (Disabled Dad).

  10. mouth
    I have some theories, none of them I like, about who wrote that. But I'm over and done with theorizing.

    No doubts at all about Crystal. Can't wait to have her back in the fold. Should be a nice transition and Carter likes her a lot as well.

    Thanks. I don't know why, but when I read your ID name, I am always reminded of the commercial where they say 'Are you Gellin'?'

    Never apologize for long. Long is good. And thanks for the stuff about this week. It's been a really great experience.

    I'm not worried. I'm ready to bitch-slap anybody who pisses me off. Hiiiiiiyaaahhhhhh!!!!

    I'm glad you liked that analogy on the boat. One of these days I need to actually POST stuff like that instead of writing full-fledged blogs in other people's comments. I always break my own rules.

    Good call on the Mom hire. Exactly what we had to do. I don't know what we'll have available as of July as far as services...but we'll still keep looking. After Crystal returns to school, if we still have HHA services, I have a plan I intend to put into motion to try to solve the problem on my own.

    the other lion
    Next time...you need to just kick that woman square in the vagina. Well, then you'd get fired. On second thought...forget I said that.


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