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".
An autistic brother in law entering his senior years. His elderly mother. Our family. This blog chronicles the struggles and joys - and, yes, rants, of life.
Friday, November 24, 2017
Friday, November 17, 2017
Authenticity
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.
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.
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.
Evaulations.
More evaluations.
Meetings.
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.
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.
Evaulations.
More evaluations.
Meetings.
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.
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