Resilient #AtoZChallenge

It is a myth that autistic people do not care about the people in their lives.

Someone once mentioned that my mother in law and her autistic son "Bil" have a symbiotic relationship (more on that in a future post).  She went on to say that, when she saw my mother in law and Bil sitting on a bench, taking a rest, they looked like an old married couple.

I wouldn't go that far.  But I would say that they both need each other, tremendously.

When his mother could no longer stay in the house where they had lived for over 50 years, I had thought that Bil would oppose it, and we would have a hard time moving him.

We were wrong, and I still marvel at it.

Part of it, I think, is that Bil recognized that his mother was struggling, and could no longer keep up the house.

Another part of it, I think, was the fact that he was moving closer to his two brothers.  Bil loves them both in his own way.

The move wasn't easy.  In inspecting the house, it was found that the bedroom he had lived in all these years  (in a finished basement) was an illegal bedroom.  In order for the sale to go through, the bedroom had to be torn out.  So, for the last month of the stay, Bil had to move into another bedroom, upstairs.

He did it without much complaint.  Another surprise.

So there Bil was. Ready to leave the house he had lived in all his conscious life.  He had already lost his bedroom.

He packed his own belongings.  Once the house was empty except for the large stuff the mover was moving (including beds!) a next door neighbor friend took him and his Mom in for a couple of nights.

And then it was time for another family member to drive him and his mother up here (we drove back the day before to help get things set up).

The only major crisis in the move was when he couldn't find a pair of his pants.  But, after a couple of days of fussing about it (we kept assuring him the pants would be found in the unpacking process), he announced one day "If you don't find the pants by Tuesday, I want to buy another pair."  And all was well. (We did find the pants, by the way.)

Resilient.  Bil was more resilient than we had ever dreamed.

Don't underestimate him.

New #AtoZChallenge

New.  It's usually a good thing.

Many of us crave "new".  "New and Improved"! trumpet products, hoping to increase sales.

Not so for my autistic brother in law.

He wants the familiar, but way beyond what you and I might feel comfortable with.  I can remember, several years ago, when his radio broke.  He had to get a new one.  It was traumatic for him.

Once, or so I am told, they changed the color of Bil's chair at the sheltered workshop (more on them in my "S" post) and it took him a month to be comfortable with it.

The familiar is what Bil craves. He wants the familiar because it is predictable.  When it is hard to figure out the world, he clings to the familiar. He's already figured it out.

If my husband, when driving Bil somewhere, takes a different route, Bil will immediately exclaim anxiously, "where are you going"?

If, when shopping or running errands with Bil, we do something in a different order, we need to tell Bil so he is prepared.  Sometimes, we forget, and he exhibits anxiety once again.


No, new isn't always improved, when it comes to Bil.

Is this blog new to you?  If it is, I invite you to join me on my "journey through the unknown".

Sunday the 13th

We have had several phone calls and two in-person meetings with a couple of other family members in the past week.

Tomorrow (with out me) some phone calls are going to be made.  I hope they can make contact with the people we need to speak to.  I have to work, and can not get off with that short notice to be there.

Money is going to be involved, but we are going to try to minimize how much we have to spend.

We are going to arrrange for an assessment of my mother in law, both herphysical, and her mental, state.  And we are going to have to face the possibility that she may not be able to stay in her home.

I also know one day I will be old, and someone will have to do this for me.  It gives me chills.

We had thought about moving my mother in law and Bil up here, where we and the other family members live, but realize this is going to be traumatic for everyone involved.  This may have to be a last resort.  But first, we need a road map.

So we are going to seek some professional guidance.  It's too much trying to contact agencies here and where Bil lives, too much to get our heads around.   Or do the hours of research I've done.

I've looked at research I've done through the years. I guess the time had to be right, as far as everyone realizing the time was right.

In some cultures, 13 is a lucky number.  Let's hope.

The Stuff is Finally Hitting the Fan

My mother in law's physical condition is deteriorating.  I don't think she is going to be able to continue to live alone/with Bil.

The time may be drawing close where we have to bring her, and Bil, up to where we live to spend the rest of their days.

I'll be writing more about this in the coming days.  This is going to be a complex process, and my mother in law hasn't bought into it.

It (needless to say) will be a huge change for Bil, too.

I'll blog about this more in the coming days.

Finally, this blog will truly get interesting.  I hope I have the time to update it.

Driving Mr. Bil

One of our concerns when my husband spoke to Bil's Medicaid Service Coordinator yesterday was about Bil and his need to get out into the community.

He loves to be taken to certain places - the Mall, Barnes and Nobles, Wal-Mart, even a CVS.  He likes to browse around and buy a treat for himself.  When his Mom visits someone, Bil likes to purchase a dessert - a box of candy, or something simlar.

When we come and visit, he wants to be taken somewhere.

My mother in law has increasing mobility problems. She is in her 80's and will one day reach that not-so-magic moment when she will have to hand over the car keys.

And then, Bil will need someone else to drive him.  We live over 100 miles away, so it can't be me or my husband doing the driving.

But he is very resistant to having others (other than my husband, or maybe one of his other siblings) take him places.  He really would like it, always and for all time, to be his mother.

This is one of the things we discussed which brings me to a rant I will publish soon - about Person Centered Planning.  Bil will be offered something, he will say no, and under the rules of Person Centered Planning his no means no.  So if his medicaid service provider offered him someone else to take him around, he would say no, reflexively.  Because of his disability.  Because he hates and resists change.  And a new driver is change.

But he has to be able to depend on people other than his Mom and his siblings.

More on this another time.  I think my husband made some progress on this issue.

NY Sib Survey - A Glimmer of Hope?

Today, where I live in New York State, it is Independence Day for most of us.

But not for my brother in law, Bil.  Bil, who is in his 50's, could never live independently at this point in his life.  A former Medicaid Service Coordinator who worked with Bil for several years, told me that he most probably never could.

In a perfect world, there would be a place for Bil.  The sad thing is, I don't think he has a good handle on what is going to happen after his mother, who has been at his side nearly every day of his life (except for when she's had to be hospitalized) can no longer take care of him.

There are so few services that caring in laws can use to gain independence for the brother in laws they love.  Several months ago, in fact, we found ourselves in a type of Catch-22 situation with Bil.  He lost access to certain services because he had not used them. But the reason why he had not used them is because there was no one available to give the service.

His current Medicaid Service Coordinator is caring, but there is only so much she can do in the current climate of budget cuts. But, there may be some hope on the horizon.

Today, we found out about something called the NY Sib Survey. 

This is a call for brothers and sisters of those with developmental disabilities to complete an online survey, both to educate themselves, and for officials of New York State to learn more about their needs.

The only problem was - when I went to the survey site - the survey still wasn't there, a month after it was supposed to start.  The quoted Facebook site didn't seem to exist, either. Hmmm....another victim of budget cuts?

There was a phone number, so my husband left a message.  The number is an Ithaca phone number - Ithaca is about an hour away.

I hope someone will call back. If no one does - it will just be part of the same-old, same-old.

Good News For Now

My mother in law is getting better, slowly, but is getting better.  My brother in law and his wife are going down this weekend (otherwise, we would have) - weather permitting, that is.

Other relatives visited on Monday and reported that she is doing better, but is very anxious to get outside. She's been almost completely housebound since the accident.  And Bil has been too.  When we were there three weeks ago he was just about "climbing the walls".  He hadn't gone to work, and spent most of his time in his room listening to his radio or his TV.  For all that he likes to be isolated, it was even too much for him.

I planned to write about our visit, but somehow it never came to pass due to other things happening in my life right now. But I hope to resume more regular entries in this blog in the near future.

Change...It's a Gonna Come (part 2)

My brother in law's medicaid service coordinator told us the story once about them having to change his chair at the sheltered workshop he works part time at.  It was a different color than the old chair.  He was very unhappy, and it took him over a month to adjust.

Little things during our visit....we were already familiar with these issues, and know they are part of the autism "package" but now we were seeing it in action day after day.  For example:

We were taking him places, and added a stop at the last minute.  He was immediately anxious.

His other brother in law said he'd be back to pick bil up at a certain time, and he was a few minutes late.  As soon as the appointed time came, bil was immediately anxious, with anxiety building as the minutes ticked away.  It wasn't very long but to bil it was a lifetime.

On the way out of town (husband and I driving him the 3 hours back home), I knew we would pass the library.  I had books I had to return so we decided to swing into the parking lot and use the drop off box.  Immediately, bil anxiously exclaimed "what are you doing?"

Same thing when we got into his home town.  You are on the main road and then you have to take several local roads.  Husband turned onto one particular road and suddenly from the back of the car came the anxious "what are you doing?"  It must be my mother in law doesn't take that particular road.

And finally, when we got home, my brother in law told his Mom he had bought a new pair of shoes.  Immediately she said "you are going to throw the old ones out, right?"  He just stared at her.  She then said "Tell me you are going to throw out the old shoes".  Apparently once something is worn out or broken, it's very hard to get him to get rid of it.  My mother in law is a meticulous housekeeper but she has to do all of that.  He won't get rid of old things on his own.  At least not without a great deal of effort on her part.

More later.

Change...It's a Gonna Come (part 1)

My mother in law is back home, and my brother in law is now returned home to his room in his house. This is the one place he remembers living in.  And one day he is going to have to leave it for good.

Change is going to come.  It's the elephant in his room.

My mother in law has fallen several times.   She fell around Christmas time and this time she doesn't seem to be totally bouncing back.   My mother in law, bless her, she is fiercely independent.  She has done much in her 11 years of widowhood.  She didn't even tell us about this fall right away.  No surprise, she hasn't always told us about the other falls.  We usually find out because she has a visible bruise or has otherwise hurt herself. And I wonder how many other falls there have been.  One day it is going to be "the fall".  And then what?  It's the big "what" that all grown children face with parents one day.  It's just our turn now.

Anyway, several things of note.

First, in talking about her great time in Florida, she mentioned she fell on a sandy beach, despite hanging on to her nephew, who was walking with her.  She just couldn't keep her balance.

Second, she mentioned she had been so relaxed in Florida, and now she felt like all the weights of the world (that wasn't exactly what she said-I'm paraphrasing) were back on her shoulders. 

I wonder exactly what she feels about her disabled son.  She's always been so protective.  A couple of years ago, when his name came up on something called the "NY Cares" list, she would not let him go.  And she also made a comment, the time before this, about people saying bil is company to her.  She said he really wasn't.  I couldn't believe this, it was not like her at all.

Maybe the truth slips out more easily now.

She still tries to protect him, but she no longer can't.  Now, bil must be the best help to her that he can be.  Change comes to us all.  It doesn't come well to him.  More on that next.