Thursday, September 30, 2010

Flood Fascination

I didn't call my mother in law tonight, but I can just imagine what Bil is going through right now.  His fascination with the weather on TV mixed with his fear of extreme weather "in person".  His area didn't get the torrential rains we got today (my son put out a 6 inch gauge and it was overflowing by late afternoon) but they will be hit later tonight.  I know Bil will be following the weather up here closely, giving my mother in law frequent updates. 

I hope they don't have thunderstorms. We didn't but we had a very strong wind gust and I guess I'll find out on the news later how much damage that did.

Jim Cantore has been reporting on this storm all day.  Jim isn't Bil's most favorite Weather Channel's personality (he is partial to any blond female, and that has nothing to do with the weather) but is probably his favorite of the men.

Unfortunately, where mil and Bil lives, they are prone to losing power (knock on wood we are not) so I hope my mil is charging her cell phone.

Hopefully he rides the storm out OK, and his area doesn't flood.

Sunday, September 26, 2010

Here We Go Again Part 1,849

I know, I haven't posted in a while.  Things have been a bit hectic in another part of my life, with some associated deadlines.  But here I am again.

Our visit last week with Bil and Mil went OK.  But in one way I'm still....not seething, but rather, seeking to find a way around this.

The day Mil dies (or has a major stroke or other sudden event-and she's had one small stroke again) we are going to be in a lot of trouble.  We do have HIPAA releases (my spouse does, anyway, which is all that matters) signed so Bil's primary care doctor can speak to us.  But we don't have anything else.  We can't help him with other medical matters, we have no releases to help him with checking, banking, paying bills or anything else.  His MSC (Medicaid Service Coordinator) has been seriously ill, and we suspect she has missed visits, with no one else at the organization he is a client of taking up the slack. We have no guardianship papers on Bil, no representative payee and I am not even sure which way we should be going or who we should be asking.  We don't want to spend more money on lawyers.

My Mil basically does what she wants.  She's asked me to research things at times then does what she wants to do anyway.  I feel like I am not going to research anything else for her.

But that day that Bil is alone in the world without her:  THEN WHAT?

I don't know that guardianship is what he needs.  But the latest thing that had me a bit upset is that she has a financial advisor and has given him almost everything Bil has, moneywise, to invest.  The advisor is quite willing to speak to us, which is good.  What it came down to is that there is no way to have us look at Bil's accounts online because my spouse is not a trustee of the trust.  We are a bit gunshy about his investing because in a previous investment she received bad advise on (NOT from this advisor) Bil lost a bit of money.  And then the next financial advisor rolled this bad investment into another bad investment.  So he lost even more money.

She has his money in the stock market, for Pete's sakes, someone who works part time in a sheltered workshop. And she doesn't understand the stock market.  That's what I am really concerned about.  I don't know if she is getting bad advice AGAIN.  And if that is serving Bil at all.

I wish we could convince her we are not "after" anything.  She is quite willing, more and more, to ask our help on her own affairs. But mention Bil, and the Great Wall goes up.

Meantime, we'll have no legal ability to help him when "The Big One" hits.

How do you find this kind of stuff out?  I should know but I am pulled in so many different directions right now, it is like my mind has turned to mush.

Sunday, September 19, 2010

The Newspaper and Advocacy

This isn't a post about Bil "per se" but has to do with advocacy.

We've learned (I hope we have anyway) some tricks in the years of having to advocate for Bil and another family member, and hope the skills we learned make the below have a good outcome.  So thank you, Bil, for indirectly helping your mother.

I've written before about my mother in law, Bil's mother and caretaker.  She is in her 80's and suffers some mobility problems from some falls, and from a minor stroke she had almost three years ago (minor, in comparison to what might have been.) 

One thing my mother in law enjoys is her morning paper. But this has become an ordeal for her.  She has been having Bil go out and get it for her.  But finding the paper for Bil is like a daily scavenger hunt.  Will it be in the bushes?  On the driveway? Wet and unreadable? During the winter, will it be in a snowbank?  Or will it be somewhere mysterious, to be found weeks later?  He really wasn't up to the task, she sure wasn't and...for a dying industry to treat a 40 year subscriber that way,  to me was Just Plain Wrong.

My mother in law is a strong woman but more and more appreciates help.    She called the 800 number (this sure implies their customer service is outsourced somewhere doesn't it) and was assured, and assured, and assured, that the paper would be delivered properly.  All my mother in law wanted was for the paper to be put on a shelf under the mailbox, which would have been quite reachable by any deliveryperson without leaving the comfort of their vehicle.  Anyway, this 800 number gave no resolution.  I sure would like to know where she was calling?  Was it even in the U.S.?

Anyway, this Friday we visited and for whatever reason I decided I needed to do something so she could enjoy her paper.  I went to the paper (she said it was picked up by Bil that morning but the date was from over two weeks before!), got a feel for what the email addresses were like, and decided (although they didn't give his email address) to email the publisher and the VP of Sales.  I stated my case simply, just the facts, without any anger (this, we've learned, is the most effective way) and told them what I wanted the resolution to be-daily delivery onto that shelf.  And, I gave my full name, address and phone number also as the daughter in law who wanted to be advised of the resolution.

It was about 5:30 pm when I emailed.

I guessed their email addresses right.  The emails didn't bounce back.  I went and ate supper.

Within an hour the publisher emailed me back and copied several people.  Within the next few hours I got two other emails.  Then Saturday a rep called my mother in law and spoke to her, apologized, said the paper would be delivered per our request, on the shelf under the mailbox.  When I got home yesterday there was a phone message from the same woman, and an email from one of the earlier people (I had answered each email, thanking them kindly for their help).

It sure stirred up a little hornets nest, didn't it.  And if the papers keep coming in the bushes and in winter snowbanks, guess who will get a followup.

I do hope no other of their elderly subscribers are going through what my mother in law did.

So, again, some of the ways of advocacy we have learned came through.
Keep your temper (so hard to do sometimes!), be objective.
Be Prepared with the Facts
State them simply, do not show anger, do not ever be sarcastic.  Remember you are dealing with people (as hard as that can be sometimes especially when people get carried away with being bureaucrats.)
State the resolution you want
If you get results, always thank the people involved who help.

To the newpaper I would say this:
Dear publisher, I appreciate you working to get this resolved.  I hope it is resolved, and that your folks carry through on what they have promised my mother in law.  She deserves service.  She's been a loyal customer for over 40 years! And it is too bad someone had to go to the "head honcho" to get that service.
I appreciate you responding to me so promptly.  But it is obvious you are outsourcing services.  If you are doing it to save money, I'd like to suggest that you take a good look at what you are doing.  You may not be saving money if your service is driving customers away.
Those customers won't be back.  My young adult son wouldn't pick up a paper to read it if he was dying of boredom.  So you really need to keep the customer base you have.

I hope you do.

Sunday, September 12, 2010

Social Interaction

You don't have to have autism to feel, sometimes, that social interaction is like a gigantic minefield.

I sometimes feel like that-a lot.  I'm introverted, and sometimes I would just rather be by myself.

Bil, though, takes it to an extreme.  I guess that goes without saying for anyone with autism.

Recently, though, I read a blog post that seems to say it all.  With funny pictures.  If you explore her blog, it will be time well spent.

I do keep thinking of the last time we were together with Bil (almost a month ago! time flies-but we will be seeing him again in about a week, everyone's schedules willing) and he actually came out and stayed apart from us, but close enough to observe us, when our family was all together on a porch, visiting.  That's the first time I've ever seen that happen.  We didn't encourage him at all, he did this on his own.

It may have helped that he was not at home.

I do wonder though, if my mil does need to have surgery, if he will come out any more from his shell if he ends up having to spend time up here with his two brothers.

I'll probably have more to write about after our next visit.

Tuesday, September 7, 2010

The Life More Restricted

This is not an autism post.  Rather it is a book review that I happened to stumble upon.  You could call it the life most restricted by circumstances-in this case, polio.

I've written about polio before.  I know at least one person who had it as a child.

Polio.  It struck terror into our hearts as very young children.  I was young enough to be just entering school when the Salk vaccine came out.  I remember lining up in the basement of my elementary school to get my shots.

Life in an iron lung would have seemed like a death sentence.  But not to the author of this book.

Makes me feel in a way strange when I think of Bil.  Is he happy within the circumstances of his life?

At least the woman in the iron lung was able to write her memoirs.  If Bil wrote his, what would he say?

And, would I want to know?

Monday, September 6, 2010

Surgery for Bil's Mother?

It looks like my mother in law is serious about pursuing surgery for her knee.  One of her nieces (in her 60's) is going to have some arthroscopic surgery and Mil is talking about seeing the niece's doctor-about an hour from where Mil lives.

I can't blame her.  It is putting her ability to live independently in some jeopardy.  Independence is extremely important to my mil.  I mean to say, it is important to us all but to her and others of her generation, I suspect it is important to a degree we baby boomers can not imagine.  The "rugged individualist", she is a very devoted Republican.  (I only mention that to give an idea of some of her mindsets.)

So I spoke to my husband today.  In my point of view, he tends to procrastinate over anything to do with Bil's housing situation.  But now he is going to have to face the fact that if she goes ahead with the surgery she may have to spend some time in rehab, and Bil can not live alone.  He will need some kind of in-house care, or someone looking in after him. 

We live 150 miles away.  The nearest sib is about a 20 minute drive away and works an afternoon/early evening shift at her job.  I don't know, in all honesty, how she would approach being "the one".  (This also gets a little into the book about daughters and daughters in law expected to do the caretaking that I mentioned in another blog entry.)  Bil works part time, two days a week (and I know they have been cutting his hours), and would need someone there to meet him when he gets off the ARC bus, and to make sure he is fed-among other things.

I know my husband will face this head on and full speed ahead when it is upon him-where we tend to differ is that my tendency is to be proactive and his is not.  Guess only time will tell who is right, but as a daughter in guessed it, tag I will also be "it"!

(and we haven't even faced the colonoscopy his doctor wants Bil to have.....)

Sunday, September 5, 2010

OMRDD vs. OPWDD or, What's in a Name?

Don't you love the names of these government agencies.

What's an OMRDD?  and why should it have been renamed OPWDD?

Just as the "Associated for Retarded Children" morphed into the "Associated for Retarded Citizens" (when many of its clients were actually living into adulthood-one small leap for its time) and then "ARC" with local chapters such as ours getting rid of the "ARC" intials has the NYS Office responsible for those with developmental disabilities decided to join modern times.

The word 'retard', once quite acceptable and descriptive (way beyond its narrow meaning as a technical term) is now one of those names that we recognize as a put down of those it tries to describe.  How can a "retard" show progress?  How can a "retard" be equal to you or me?

That's why our local "ARC" now calls itself....ACHIEVE.   How fitting.

A while back, the "OMRDD" in New York State recognized this same thing - since, yes, that's what the "R" in OMRDD stood for.  So years after the "R" word became a mind set to avoid, our NYS bureacracy was still serving its "retarded" citizens.

Not any more.  We were the 49th state to drop the "R" word but the important thing was that the preson who signed this legislation into law was himself disabled.  Not "retarded" but visually impaired. (some would say more about our governor but-that is treating him on terms of performance, not disability.)

So now people like Bil have to deal with the "Office for People with Developmental Disabilities".  Make no mistake, still the old bureaucracy.  (and, I hate to say it, but it's going to take a long time to remove OMRDD from my vocabulary.  I'm still trying, hence this post.)

All we can strive for is the day when "disabilities" is a word to be removed from the vocabulary, too.  Because the blunt truth is, these offices do not serve our disabled citizens.  In my point of view, the government programs that assist serve more (from what I've seen) to keep them down, in poverty, and dependent on government.  But I digress.

We have a long way to go, in basics such as liveable wages and housing for our "disabled."  I may write more about that in my next post, as far as Bil.

Friday, September 3, 2010

Mr. Bil and the Hurricane

Was Bil disappointed with Hurricane Earl?

I can see him now, tracking every moment of it.  I know he's pretty relieved, actually, that it went to the east and didn't hit where he lives.

Weather on TV?  Enjoyable.

Weather in "real life"?  That's a whole other story.

As a child (and even now) Bil was terrified of thunder.  He isn't even that thrilled about rain.  When my son was injured in a car accident, Bil was eager to get his mom up here (well, not that he could drive her) until the forecast on the chosen day was rain.

He stayed home.

Weather has always been Bil's special interest though.  He loves the Weather Channel and Jim Cantore.  (Also any blonde woman who happens to show up).  I wish there was some way he could tour the Weather Channel one day, but getting him down to Atlanta would be a whole other challenge.

A challenge about as challenging as braving a hurricane.