Why Scare Myself?

Why am I trying to scare myself?


Today I am following a prompt on #FridayReflections:  “Do one thing every day that scares you” – Eleanor Roosevelt. Use this quote in your post or as an inspiration for one.

I grew up considering Eleanor Roosevelt, the wife of United States President Franklin Roosevelt, as one of my early childhood heroines.  In case you are not familiar with the U.S. Presidents, Franklin Roosevelt was the President from 1933 to his death in 1945.  From the time he was first in the public eye, he kept a secret - his legs did not work. In a time when the disabled faced major discrimination, he hid the fact that polio had taken his mobility.

Eleanor, of course, kept his secret.  But she accomplished so much more apart from her role as First Lady.  She was a writer, humanitarian, and diplomat. She had a newspaper column for many years.   She wrote many books, including her autobiography.  She grew up in a time where women were raised to stay silent, and refused to.

It's sobering to realize she didn't even have the right to vote for the first part of her life.

Meantime, I am about as introverted a person as a person can get.  I've rarely spoken out about my political views.  But now, in the present United States climate, I feel I must speak out.

I find myself starting to write somewhat political blog posts.  I have contacted the offices both my United States senators to voice concerns about treatment of the disabled (even doing it by email took courage for me). 

I am thinking of other ways to exit my shell.  It's hard.  But living in a country whose direction is changing to one that frightens me is also hard. 

Additionally, I am seriously thinking of joining the Blogging from A to Z Challenge, which will require 30 posts in 30 days, based on (in order) a letter of the alphabet.  April 1 - A.  And so forth.  I have never done daily posts on this blog and that challenge would really stretch me.  And, yes, scare me.

I even think I might I go all out and try to use these posts to blog a book. I'll be scared for even longer.

But it is necessary to do what scares me, if my brother in law "Bil" is to retain the quality of life he now enjoys.

A daily scare?  Not quite yet.  But, Eleanor, I'll give it serious thought.

Bil's Declaration of Political Independence

I found it so hard to find a good title for this post about "Bil", my 50-something brother in law who has a developmental disability called autism.

Bil spends hours in his room, watching television.  But it isn't all for entertainment or to fight boredom.  Bil enjoys listening to political talk and news shows.  He has enjoyed these shows for years.

But he didn't vote until recent years, because no one really made the decision to find out if he was interested in voting.

When my husband and I moved Bil up here last year, we got him registered to vote.  He registered in the same political party as his mother, whom he has lived with all his life. That was not surprising. In many ways, he never showed much independence from the way she thought.  He watched the networks she watched for news.  He watched the talk programs she watched.

In the New York Presidential primary this April, he voted (we know this, because he told us - not because we asked him, because it is none of our business) for a candidate his mother would have supported.

But, a couple of months ago, he had an annual review at the agency that provides some services for him.  His mother, and my husband (who is Bil's guardian) came also.  By then, it was certain who would be running from each political party.

And there, he made a startling pronouncement, out of nowhere, while everyone discussed his progress.  It was the most surprising off-topic comment of his life.

He was voting for the "other" party's Presidential candidate, for a candidate his mother detested.

The people who work with Bil were pleased.  Very pleased.  Not because of who he was going to vote for, but because he had broken with his mother.  And indeed, according to my husband, Mom shot him a not-to-pleased look.

As he progresses in the program he is in (a topic for another blog post) he is slowly starting to show signs of independence - of trying to find his own way.  Most of us separate from parents as teenagers, finding our own way.  But Bil never did.  In some ways he never fully grew up.

I only think this is going to continue.

This may make it more difficult in some ways once Mom can no longer take care of him - he listens to her in situations where he won't listen to anyone else.  But he has the right to his own political opinions, and, in fact, his own opinions, period.  Opinions he has formed, not opinions handed down from someone else.

And yes, he will vote on election day.

Proudly.

Autism and Medical Coverage

I found this blog post interesting - about the possible effect of the Health Care Law on autism mandates.

In case you are wondering why so many people with disabilities need Medicaid, this is a perfect example.  Health insurers have been slow to "step up" and cover autism.

Meantime, we wait for Bil's Medicaid Service coordinator to finish her research on what we may want to try to do to keep Medicaid coverage for one of Bil's medication - they will no longer pay for the brand name, and it is doubtful right now that they will even pay for a generic.

But on the other hand, people with autism may finally be able to get some health insurance.  In the past, health insurers have refused coverage for non-autism related illnesses - just because the person has autism.  Shall we hope no more?

And now, back to fighting Medicaid formularies.

Voting and Bil

What better day than Election Day to talk about voting and people with autism.

Bil voted for the first time...let's see, it was two years ago, for President. (keep in mind that he is in his 50's). My mother in law has very definite political views and, when she isn't watching the food network, has a network on famous for its political programming. So that is what Bil is exposed to on a daily basis.  Sometimes I am not sure what he is cognitively capable of (he does have a below "normal" IQ, but IQ tests don't test everything) but I can tell you he has picked up on this political programming.  He has definite political views - he, of course, does not discuss anything.  But, in the middle of a totally unrelated conversation he may blurt out something about the President-just as he might blurt out something about the weather or about his other main interest, the NY Mets.  And then, that's it.  If you try to engage him, it's almost impossible.

I don't know who came up with the idea, if it was Bil or if his Medicaid Service Coordinator who urged him to vote but vote he did.  In a way I'm surprised my mother in law never took him to vote but perhaps she assumed that if he didn't ask, it was because he wasn't interested.  At any rate, his MSC was very proud of Bil having voted.

I don't know if he voted today, but will be curious to find out.

The other recent political "interest" I've seen him show was back in July when Bil, my mother in law, my spouse and my sister in law all stayed in a hotel room to attend a wedding.  Around 8 or 8:30 Bil became slightly agitated, seems we didn't have a particular political show on that he enjoys.  We weren't watching any TV at the time-we had just had supper and were all enjoying each other's company.  Since we had rented a suite, knowing Bil would want privacy, we put on the TV in the living room for him and the rest of us retired to the bedroom area so he could watch TV in private.  But this may have simply been a function of Bil seeing this show on every night (I think it is on every weeknight) and, since it was a Friday, it would have been part of the routine.

I guess the moral of the story is:  if someone with autism can vote, we all can vote.  So:  get out there today and vote!

Choose your Political Leaders Well

I do not take political sides in this blog.  However, I do tend to pay extra attention to candidates who pay attention to issues of interest to families who have a family member with autism.

I found an interesting blog on politics and autism recently.  I don't know if I will have time to follow it, but it does claim to be non-partisan and the writer does appear to have the political science "creds".  One thing I wish is that he would have posted (and maybe he did, I just didn't find it) "why" he is interested.

Still, it sounds like a good educated read, to anyone with the time.