Friday, September 29, 2017

Fearing for the Future #FridayReflections

Today, on #FridayReflections, we have 10 minutes of free writing.

No editing.

Walking on the high wire.

Let me tell you about something that happened the other day.  I was in the building where I work, and someone flagged me down.

"I saw you at the XYZ meeting.  Are you doing the Front Door?"

I was taken aback a minute.  But then I remembered what she was asking, after she told me "I was at that meeting, too.  I was sitting in the back, and you were sitting (where I was sitting)."  Funny how that jogged my memory.  And then, I certainly did remember.

What that meeting was about was finding out something about a self determination program.  It may well be that eventually, all people with disabilities in New York State will be funneled through that program.  Instead of having others set up programs, the disabled person is basically given a budget and told to hire their own people.  You need to keep track of hours.  In fact, if you find out that the provider of services is not doing their job properly, and you don't immediately speak out, you (the disabled person, or the advocate) may be committing Medicaid fraud.

Anyway.  She asked if I had signed "Bil", my developmentally disabled brother in law, up for that program.  I said no. 

This is what she told me.  She has two children.  One is not disabled.  The other one has serious medical issues.  And she's been having some trouble getting services.  But she hasn't signed up yet, either.

Sometimes I think the pendulum has swung too far.  At one time, disabled people were treated as second or third class citizens, or even as little children, even if their disability didn't affect their mental functioning.  The "People First" movement has been a blessing to many of those people, who can now manage their affairs, with supports.

But then there are the other people.  The medically fragile.  The intellectually challenged.  Under many of those programs, they still have to make the same decisions as those without cognitive disabilities.  Or, they can be like Bil, in his late 50's, and never having had to take charge of his life before.

You just can't be thrown, if I can use an expression, into the deep end of the pool, with out having had swimming lessons. Good luck with that.

I fear for Bil in the coming years.

What if, one day, he ends up with no family to advocate for him?  The two brothers in his life are both older than him.

One day, we may look back on these days. 

And with that, I finally want to say that I still am not sure what direction I want to take this blog in.  I may blog for the rest of October, although I am participating in several challenges with my main blog.

If I stop publishing, I will let you, my readers, know.

(end of 10 minute free write).

Join Sanch Vee and other bloggers at #FridayReflections.

Friday, September 22, 2017

The Blue Bicycle and the Boy #FridayReflections

Photo Credit:  Sanch Writes
The boy looked out from the motel window.  His family was at the beach, enjoying a rare vacation.

In the distance was a girl's blue bicycle. A beautiful aqua blue, it had a basket, perfect, perhaps to carry a picnic lunch.  It had been left there near the water.  Perhaps the girl who owned it was swimming with the rest of his family.  Or eating.  Or doing something else fun.

His family was on vacation, true, but while his sisters had gone with their mother to the beach, the boy had to stay behind with his Dad.  His Dad tried to distract him, but it didn't work.

"Why do I have to stay behind, Dad?" he thought.  "Why will I never even be able to ride a bicycle? Or swim?"

With an effort, he got out of bed to get a closer look.  The effort in itself winded him.  He paused to catch his breath, while his father looked at him, making sure he didn't need help. 

He knew better than to ask the question.

It was his heart.  He would be confined, for the rest of his life, to bed.  But every moment, with every beat of his damaged heart, he would ask.....why can't I be like everyone else?

* * * *
Writing for #FridayReflections.  Today's prompt - the above picture.
This is not total fiction, but rather, is based on the story of one of Bil's next door neighbors growing up.   The neighbor child, "A", born with a congenital heart defect, died when he was in his early teens.  He died before I met Bil's older brother, my husband.

Bil is in his late 50's and developmentally disabled.  He also has an almost "photographic" memory. 

Perhaps he sometimes thinks of "A", the boy who had to stay in bed for part of his life, and died so many years ago.  

And maybe he thinks "we all deserve the best lives we can have, despite what others call our disabilities".

Friday, September 15, 2017

The Impossible as Possible #FridayReflections

"We are all faced with a series of great opportunities brilliantly disguised as impossible situations" - Charles Swindoll.

So true.

I've been blogging about my brother in law, "Bil", in his late 50's, and autistic.  We are trying to get him "forever" housing as the day his mother can no longer care for him approaches.  Both we and my other brother in law/wife are older than him.  We won't be around forever, either.

We thought an apartment opportunity had opened.

But several days later, unexpectedly, we were told the apartment was no longer available.

Frustration.  Disappointment.  Sometimes, it really does seem impossible.  People with disabilities in the United States have it better than in many other countries, but still.

Bil can no longer find work (I should blog about why).  Bil has a very limited government pension.  His medical coverage is in danger, thanks to the feeble efforts of health care reform in this country.  Why should that even be?

I need to be a better advocate.  But I work full time, and I also have my elderly mother in law to think about.  It's nice to know there are great opportunities out there somewhere, if that quote is true.

So now, the future of this blog is also on my mind.  I have few readers.  I get that.  The subject matter is somewhat specialized.  I also keep myself anonymous for personal reasons (and because I talk sometimes about family), which prevents me from promoting the posts on social media.

I wanted to write a book one day.

Maybe it will all happen.  But right now, it just all seems impossible.  Should I quit?

The prompt I am writing for says "no".

There's always tomorrow, when the impossible may become possible, and another opportunity may open up.

Written for #FridayReflections, hosted by Sanch Vee.

Friday, September 8, 2017

Alone Together #FridayReflections

How can someone be alone, but together?

You can listen to this Fall Out Boy song, "Alone Together".  "We can stay young forever/we'll stay young young young...." the lyrics read.

The problem is, none of us can stay young forever.

One day, the ultimate loneliness will come, especially if a family comes apart.

For my mother in law, it may be today, when she finds out that her autistic son is being offered an apartment.  After years of waiting, "Bil"'s name has reached the top of the waiting list.  They have never lived apart.  My mother in law has made it clear, she doesn't want him to leave.

She never made any arrangements for Bil's future.  She never once sat down with us to share what she hoped we would do for Bil.  I admit to having a lot of anger about that, and anger that her inactions have led to this moment.

If Bil doesn't take the apartment, his housing future is uncertain.  None of us can guarantee what will happen the day his mother can no longer take care of him.

My husband and his younger brother are both older than "Bil".  He needs care for the day we are gone. Chances are, he will outlive all of us.  In fact, he is in better health than any of his older siblings. 

We want very much for Bil to seize this opportunity for independence.  At the age of nearly 60, Bil can start to truly grow up and take on adult responsibilities he has slowly been training for through his day programs.  Everyone feels he has a potential for achieving a lot.  He has been through a lot these last two years since moving up to be closer to us.  So have we.

So, although we are one family, we are split apart.  Mother in law on one side, the two brothers on the other side.

Bil in the middle.

Alone together.

What future will Bil choose?

We will know after today.

Join Sanch Vee and other bloggers at #FridayReflections.

Friday, September 1, 2017

Ephemeral Hopes and Dreams #FridayReflections

Here we were, our hopes popping like a fragile bubble.  It only took one sentence. 

"I don't want to leave my mother".

We were hoping, so hoping, that my developmentally disabled brother in law, "Bil", could find a housing placement before the time (not too distant, we feel) that his mother will no longer be able to care for him.

When you are young, time stretches before you like an endless highway.  Now, in my 60's, it seems like a rapidly revolving roll of toilet paper reaching its end.  Bil is only about six years behind me.

Earlier this week, "Bil" and some of us toured the three types of housing that would be available in our community with someone who has Bil's disabilities.  He has expressed interest in living away from his mother.  In a day program he has been in for two years, he has made strides towards being his own person. 

I feel I should explain a little more about these housing opportunities.

"Supportive" housing actually gives the least support.  Bil would need to be almost fully independent, able to cook and shop for himself.  He is not there yet - he is afraid to use a stove, and has done very little food preparation in the past.  And we have found that he will not do basic chores needed for independent living without prompting.  In this placement, there would be no prompting, and no staff on premises.

"Supervisory" is the next level, and the one that Bil decided he would be the most interested in.  In supervisory housing, there are a couple of full time staff on premises, ready to help with any kind of emergency.  Other than that, the residents are expected to be somewhat independent. Bil would have his own room, share a bathroom, and share a common living room space, all within a large house housing six men and nine women. 

The home we saw was spacious and clean.

Finally, "IRA" or what used to be called group homes, is the most restrictive.  We agreed this was not suitable; that Bil's level of functioning called for a more independent type of housing (but not as independent as the supportive apartment).  In fact, the one we saw seemed to be more of an assisted living facility geared to people with physical frailness.  That is not Bil.

As we toured, Bil said he doesn't want to leave his mother, who is nearly 90.  He is worried about her and her physical decline.  But, that shouldn't be his worry, and we've told him before that her well being is on our "worry plates" not his.
So this is an addition to our "worry plate".

So we asked what would happen if Bil tried the supportive housing.  When I asked "what happens if he doesn't succeed?" it sounded like they were tip toeing around the truth.  Finally, one gentleman said "he might be returned to his mother's apartment".  In truth, if he turns down the placement, he goes to the bottom of the list.  And it is a very long list.

And his mother's reaction to the possibility of Bil living apart from her (although he would be about five minutes away)?

Needless to say, she was not happy.   She does not support him in this.

Her years of independence have also been ephemeral.  Now, she falls constantly (one fall and one slip since June).   She won't let go of Bil.  But if something happens to her - then what happens to Bil?

She has to let go.  She has to make Bil comfortable in his decision so he can keep growing as a person. 

But life is a series of ups and downs.  Perhaps another up is just around the corner.  Perhaps this setback is ephemeral, lasting for a very short time.

Join Sanch and other bloggers in #FridayReflections.