Friday, January 12, 2018

Taking A Break

I've decided to put this blog on hold for a hiatus while I think about the direction I want to take it in.

I had thought about blogging a book based on my experiences with my autistic brother in law, "Bil", but I never got very far with it.

I am facing my mother in law's declining health, and other issues.

She was hospitalized earlier in December with a lung issue and put on oxygen.  We had additional difficulties with her this week.

I have to admit that watching her decline has stirred emotions in me - strong emotions - that I could barely believe I was experiencing.  I had a couple of day that were emotionally rocky for me.

I have a handful of of steady readers, and I am so grateful to them for sticking with me.  Thank you thank you thank you. 

If you have read my blog, thank you so much. I will be back.  I just don't know when. 
Farewell for now.

Friday, January 5, 2018

Our Own Independence

Welcome to the wonderful world of having a disabled sibling or in law. It's a journey that you either get or you don't get.

Next week, we are going to be attending an annual planning meeting where the Individual Service Plan for my autistic brother in law, "Bil", will be developed.

And, I have to face some uncomfortable truths.

The world for people with autism has changed dramatically since he was born almost 60 years ago.  And, Bil is finding it difficult to keep up.

He's gone from a world where people with disabilities were expected not to speak with their voice, and, instead, go along passively with decisions made by others.

He's gone from a world where people "like him" sometimes ended up in institutions with little hope and worse living conditions, to a world where people want him to be independent.

That word - independence.  People working with him are saying, that for Bil's long term good, he needs to live in an apartment where he would be expected to do most everything for himself.  He would need to provide his own transportation (his feet) or learn to use mass transit.

Other people with disabilities do that, but Bil has been waited on hand and foot by his mother for almost all of his life.  And he still expects things to be done for him by her, or by us (his siblings and in laws). He's never expressed a desire to learn mass transit, for example, and under the "People First" philosophy they can't give him that training unless he asks for it.

No, instead, he waits around until he knows someone is going to visit, and then he wants someone to take him somewhere.

Bil does need help.  But, at the same time, we deserve our own lives and our own freedom, when it comes to things Bil is capable of.

Bill is capable of walking - he has no physical disabilities.

He's capable of learning a lot, given the right training.  We've already seen glimmers of this in a day program he goes to twice a week (although, early this year, he will have to be removed from it, because of his "improvement".

But he has to ask to be trained for the skills of independence. We could say the system is stacked against him, and we can feel sorry for ourselves and yield to it.

We had a family meeting last weekend, and we aren't yielding.  To either the system or to Bil.

We may have to find our way differently.

Friday, December 29, 2017

Looking Back on 2017 #FridayReflections

2017 has come and gone in the blink of an eye.  That is what happens when you age - the years spin by faster and faster, like an unraveling roll of toilet paper.

Right now, I feel about as strong as toilet paper.

On this, the last Friday of 2017, I look back on a year that, for my autistic brother in law, has been one step forward and one step back.  And we look ahead to 2018 with some trepidation.

Kind of a cha-cha-cha dance for people with disabilities, including my brother in law, "Bil".

On the bright side:
Bil has made progress in his day program.
Bil is (apparently) at the top of the housing list, although that is because of the declining health of his mother.

On the not so bright side:
He is being pressured to take a housing placement that may not be suitable for him - a somewhat independent situation, for someone who is almost 60 and has never lived on his own for a day of his life.  For much of that life, his mother waited on him "hand and foot" as we say. Funny I should use idiomatic speech as it is something Bil has a lot of trouble understanding.

We are being pressured to accept something called "self determination", which could have some benefits, but would a lot more of our time and effort - I work full time, and all of Bil's siblings have health or physical problems.  And two of them are senior citizens, older than Bil.  I am a senior citizen too.

And, as I mentioned, his mother's health fails, something not unexpected in this, her 90th year.

In a way, I dread what is coming next.

I wonder how Bil feels?

A look back at 2017, for the last #Friday Reflections.

Yes, I dread the new year.

Friday, December 22, 2017

Dear Santa #FridayReflections

Dear Santa:

Oh, if only you were real.  I would have so much to ask you for.

I would ask that we humans treat each other fairly and with dignity.

I would ask that our health system be fixed.  Last week, I saw firsthand how dysfunctional it can be.

I would ask for housing suitable for my autistic brother in law.  I would ask for a system helping those with disabilities that was easy to manuver and really did do right by the people who depend on that system.

And, Santa, while you are at it, how about peace and plenty for us all?

I don't ask for too much, do I?

If only I had the time and energy to write about the events of the last week, Santa.  But for now, I am setting it aside, and getting a good night's sleep.

Join Sanch Vee and others for #FridayReflections, and see what we are asking Santa for.

Friday, December 15, 2017

Expecting the Unexpected Once Again

My mother in law was taken to the ER yesterday, and hospitalized.

So the day that my brother in law, "Bil", may face living without his mother gets closer and closer.

For right now, the doctors have several mysteries to solve, and we are awaiting the results of tests, so I will keep this brief, and blog more later.

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".