Friday, December 8, 2017

The Perils of Improving

We have a problem.  Well, we have more than one problem, but...

My autistic brother in law, Bil, will be dropped from his day program.  He no longer fits the criteria - he has improved too much.  He has to go.

This week, my husband (Bil's guardian) and Bil toured a possible new day program.

It's active.  They get the participants out to the YMCA for exercise.  They go bowling.  They play basketball.  They attend exercise classes.  They are out and about.

They asked Bil what he likes to do.  His response was "go shopping".

Hmmm....I have a feeling this is not a good fit.

So we don't know where to go. 

My brother in law, who is close to 60, has never been in any athletic activity.  For years, he worked in a sheltered workshop.  He came home and watched TV.  He went shopping with his mother.  But when his mother bowled with her friends or mall walked (those days are over), he didn't come with her.  She needed her time with friends.  I totally get that.

The day program he is with now broadened his horizons, but it was designed for those with medical issues, and now he will be in with active adults who love to be active.

I feel for Bil. 

He told the placement "he would think about it".  He doesn't have too long to think about it, though.

I hope he will try it.  We can't force it, although we can encourage it.  It is his life, his decision.

If he says no, then what?  Does he go back to sitting at home while his Mom (now almost 90 with multiple health issues) watches the Hallmark Channel, news channels, and cooking shows?

The future awaits.  And people with autism do not like change.

But change is coming.

Friday, December 1, 2017

Eccentric #FridayReflections

Eccentric - "of a person" "unconventional and slightly strange".

Today, instead of blogging about my disabled brother in law, Bil, I want to talk about me.

My father was a bit eccentric.  In modern times, he may well have been diagnosed with OCD.  One of my cousins on my father's side (now deceased) suffered terribly with OCD, and I am told one of my great aunts also exhibited OCD type behavior.

In my Dad's day, though, the behavior was "quirky".  To the teenaged me, growing up with my Dad - just us two, after the untimely death of my mother, it was more of an embarrassment.

As one example, my Dad liked to put dates on things.

For example would buy a box of crackers - he used to love to snack on saltines.  Every time he removed saltines from the box, he would write a record of it - the number and the date - on the side of the box.

He would buy socks. They were always the same style and color. He would date each sock.  And if I, doing the laundry, put two socks of different dates together, it would make him uncomfortable.  Don't get me wrong, he never yelled at me or verbally abused me - never.  But you could tell he wasn't happy.

I have my own little quirks.  When my child was young, he had several sets of Legos.  It wasn't enough for him to put the Legos away.  They had to go into the exact box they came in (so, after getting him to put the toys away, I would redo them, sorting out the Legos into their correct boxes.  If they were in the wrong box, it made me uncomfortable).  I did live my life just fine but there would be that nagging discomfort if I didn't put the Legos in their correct, original box.

Quirk?  Eccentric behavior?  Or something more?

What about you?

Join Sanch Vee and others for #FridayReflections.  Today's prompt:  "Eccentric".

Friday, November 24, 2017

If We Were Having Coffee #FridayReflections

Dear friend, here we are, sitting at the able over our coffees.

I have so much to tell you, but I'm not sure how to begin.

We had a wonderful Thanksgiving with my nearly 90 year old mother in law, and my autistic brother in law, Bil. Bil, I think, had a good time, too.

But change is coming in his life.  His day program can no longer keep him.

Next week, Bil will tour a new program.  And, the week after, he is going to consult with a gastroenterologist.  He should have had a colonoscopy years ago, and his doctor says he needs to have one now.

That's going to be fun and exciting.  The prep for a colonoscopy isn't fun for a person who is not developmentally disabled.  Not a topic for a coffee shop, so I'll have that conversation another time.

His doctor feels Bil should exercise more, as his weight keeps increasing.  He loves to eat, and we'll have to see where that goes, too.

And, dear friend, we almost didn't have that Thanksgiving at all, because my mother in law fell yesterday, leaving her apartment.  Fortunately, it was more of a sliding down her rollator than a true fall, but she couldn't get up and had to call my husband for help. 

So it leaves us again, with worries and unanswered questions, as winter starts to close in on us.

There's something about having coffee that relaxes you and lets conversation flow.  I've spoken enough - what's up with you?

Join Sanch Vee and others for #FridayReflections. 

The prompt:  "If you were having coffee".

Friday, November 17, 2017


Authenticity is the daily practice of letting go of who we think we are supposed to be, and embracing who we are. - Casandra Brené Brown

In 2010 Ms. Brown gave a talk at TEDx Houston.  Her profile says:

"Brené Brown studies human connection -- our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity. A talk to share."

If there is one person in the world who is authentic, it is my brother in law Bil, who is developmentally disabled.  I'm not sure he has ever even thought about who he is supposed to be.  He just is who he is.  In some ways, knowing him is a way of understanding humanity.  He doesn't try to be fake.  He doesn't hide who he is.

Some may call it "being naive".  But, with Bil, what you see is what you get.

This isn't to say that Bil never engages in manipulative behavior.  He isn't a saint.  And, really, we do people with disabilities a disservice when we portray them as long-suffering people that are just a step away from sainthood. And, I would not be authentic myself if I didn't admit that I don't always like him.  He isn't an easy person to know.

But Bil doesn't pretend to be something he is not.  

So, it hurt Bil when he got some bad news this week.  He is no longer eligible for his day program.  And why is that?

Because he has made strides in it, enough that he is no longer impaired enough for them to justify him attending it. But it hurt the program director when she had to tell us.  If things change, she told us, we would take him back in a heartbeat.  We love Bil." And Bil liked the program.

So now, the hunt is on for a different program.

Bil will be Bil, and maybe he will end up thriving in his new program. So again, Bil, who dreads change, will have to face another change in his life.  The Unfamiliar.  But a change that, we hope, ends up being for the better.

Join Sanch Vee and other bloggers at #FridayReflections.  The prompt is at the top of my post.

Friday, November 10, 2017

Heart's Content #FridayReflections

I would love just to be able to laze around.

To read to my heart's content.

To blog to my heart's content.

To take photos of my world.
Yes, to my heart's content, instead of having to go to work when the world is glowing in golden hour light.

But duty calls.  Perhaps an issue that has to be dealt with regarding my developmentally disabled brother in law, Bil.

Yes, because he is not going to be able to stay in his day program very much longer.

I wonder if they've told him yet.

So the contentment of my heart must wait, still again.

Join Sanch Vee and other bloggers every Friday for #FridayReflections.  Today's prompt:  Heart's content.

Friday, November 3, 2017

The Neverending Journey

I spent some time over the weekend cleaning out the binder we store our information for Bil in.  It had been a long time since we had cleaned it out, and there was a lot of out of date paper we got rid of.

That binder holds a lot - nearly 15 years of advocacy, dating back to 2003.  Our work on behalf of my developmentally disabled brother in law, Bil, actually goes back longer than that.

15 years.

Phone calls.  Emails.  Brochures and handouts from meetings.


More evaluations.


More meetings.

Some of the documents from the journey my husband underwent to gain guardianship of Bil.

Much of it obsolete now.  Much of it thrown out.  Others, still valid after all these years.  It makes me weary, just to think of it.

All of that brought us to where we are now.  Still so much up in the air.

Perhaps it will be like that until we are all a distant memory, a blip in the history of the world.

The more things change, the more they remain the same.

Friday, October 27, 2017

The Monster Mash #FridayReflections

He was a graveyard smash.

He's always been attracted to horror.  He didn't know quite why, but there was something exciting about being scared when he was able to control the feeling.

There was so much he couldn't control.  There were the schoolyard bullies when he was young.  Then, when he was trying to find his way through a work world hard to understand, there was the boss that would yell and mock him.  There were the sounds that overwhelmed him.  There were the food textures that were unpleasant.  The tags in the clothing that irritated him.  The facial expressions that made no sense to him.  The unpredictable thunder in thunderstorms that petrified him.

He found so much in the world frightening.  When something became familiar, he clung to it with all his might.  Every change in his world was like an earthquake.

But, the horror stories.  And the horror books.  It was a way of him getting revenge on his tormentors, watching them scream and then be eaten by monsters.

The song "Monster Mash", in particular, made him imagine:  what if he was a famous singer?  No one would make fun of him.  He could do anything he wanted and he could be alone whenever he wanted. 

He would have his revenge at last.

Today's prompt on #FridayReflections:  Turn the radio on to your favorite station. Write a post using the song as your prompt.