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.

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.

A Storm Chasing Dream?

The media story about a boy with Down Syndrome who was denied boarding because of being a "security risk" reminded me of a flying dream I have every so often.

Bil loves to watch the Weather Channel.  The Weather Channel is one of his special interests.  But, in the real world, Bil is afraid of the weather - especially thunder.

I doubt many adults (or children) with autism enjoy thunder.  Or severe weather.

And yet....there is a storm chasing tour designed especially for young adults with autism.

This is amazing on a number of levels.  Weather can't be predicted.  People with autism do not like change.  On this tour, they would have to accept sudden changes in plans.

Weather can be scary, and noisy.  These adults with autism must deal with unpredictable, loud noises.

People with autism like the familiar. These adults would have to stay in different motel rooms each night.

What an experience!  What a chance for these adults to expand their boundaries.

Another episode of "how I wish this was available for Bil years ago."  Now, I doubt we could get past his anxiety.  And speaking of anxiety....

I wonder how many of these young adults have to fly to get to where these tours tart.  Bil has never been on a plane.  And what would happen if we did get him prepared, and it was flight time and he became anxious?

Nice to know that certain airlines consider young adults with disabilities as a security risk.  I somehow doubt the story that this young man was being disruptive. Although, it is possible.  Just like people with autism can be disruptive if they are exposed to certain stimuli.

But a cell phone video of the young man shows a young, calm man, playing with a baseball cap.

The young man had flown more than 24 times before this.

We all know how many terrorists are people with autism. (not)

No, I think someone in the first class section they were going to sit in somehow figured out that this young man would sit in this expensive section, and no, that just wouldn't do.  And on the flight he finally ended up on, no one was seated within two rows of the family - like they had a communicable disease.

One of my dreams would be to have Bil get training so he could fly one day, just like this young man with Down Syndrome has done, with his parents' support, many times.  But he would also be at the mercy of the airlines.

I think it's likely that Bil would never be able to participate in a storm chasing tour.  Or (without a whole lot of preparation) get on a plane.  But wouldn't it be awesome if he could?

Expect the Unexpected

My mother in law has depended on the kindness of a niece and her husband who live close enough (an hour and a half or so) that they were able to do a lot of work on her house, and made a big difference in her quality of life.

Now they have decided to move over 1000 miles away to be with one of their grown children.

The move will take place sometime in 2012, I don't know when exactly. (hopefully it won't be before winter ends.)

I don't know how Bil will feel about this because I'm not sure exactly how aware they are of the extent of their kindness.  But this is going to change their lives - and ours.  Our tasks of being long distance caregivers are about to get a lot harder.

I don't know why I am surprised, because this was a logical move on their part. I'm glad they had the money to do this too.  My mother in law doesn't.

It gives me a big chilly feeling, thinking about poverty in my old age.  And Bil may well feel this too.

This year will not end on a good note for either of us-it's just that Bil doesn't know it yet.

Why the Trip Worked and Didn't Work

We are back from our trip with Bil and my mother in law (and another relative) to the Jersey shore to be at a wedding.  All things considered, the trip went well.  Here are the highlights of what went well and what could have been better:

1.  A local [NJ] relative visited the motel room in advance and gave us a heads up on what it looked like.

2.  There was an Olive Garden nearby, which Bil likes and Mom promised Bil we would eat there - of course that meant we could not try a couple of local restaurants that sounded interesting, but it was a small price to pay.  (the restaurant experience wasn't perfect though-see below).

3.  Bil knew he was going to have his own area (we purposely booked a suite) so he had his own space.  The last time Mom and Bil (without us) stayed in a motel he didn't have a defined room area but had to share and it didn't work well.  Also  the local relative gave us a heads up that the bedroom area was really small.  On the other hand, the bathroom was in the bedroom, which I had never seen before-it is normally off the "living room".  That meant when us middle aged and elderly ladies had to use the bathroom in the middle of the night, Bil wasn't bothered.

4.  The wedding did not have a screechingly loud band - in fact the music the dj (no band) played was a bit subdued.   Less noise, better for Bil.
Bil looked a bit glazed and (as usual) stayed off by himself.  One day I may find out just what he gets out of these kind of public events - I am sure he is observing every little detail but what he does with that information we may never know.

Here's what didn't work well.

1.  I think I mentioned that the motel would not give us a "handicapped" room at the wedding guest rate.  So we booked a non handicapped room and Mom's knees bothered her greatly because of the bathroom setup.  On the other hand she could have bought her raised toilet seat.  I don't know that she meant to but we left it behind.

2.  We were sat down at the Olive Garden next to a table with three young children, who did what three young children do-make noise.  I didn't have issues with the parents but I think Bil was greatly bothered by the noise.  He barely picked at his food.  Mom asked if he was having gas. (he does suffer from some digestional problems-common in people with autism.)  My husband asked Bil if he was anxious and Bil got a really funny look on his face but shook his head "no".  Of course this begs the question if Bil knows what being "anxious" is.  I suggested we get his food wrapped and he did eat in the room later.  So this turned out to be a minor issue.

All in all the trip worked better than I expected.  We could have perhaps done some more advocacy work with the motel - I still don't know what they did (not offering a handicapped room at the bulk rate for guests of the wedding) was legal or not.  But Bil having his own space was definitely the key to success.

The Bil Jersey Shore Traveling Show

We've been invited to a wedding on the Jersey Shore later this month.  My mother in law intends to bring Bil.  We have to stay overnight in a motel room.

Anyone familiar with autism knows where this one is going.

Several years ago my mother in law brought Bil to another wedding requiring an overnight stay. We weren't able to accept that particular invitation.  But I understand that Bil did not do all that well.

There are going to be 5 of us (including Bil) in a "suite" motel room.  In other words, four of us in the bedroom and Bil in the living room.  He'll have his own TV.  But I don't think any of us are going to sleep well.

I am not looking forward to this.  In a way I wish she would let Bil stay home on his own.  He is not going to enjoy the noisy reception and the strange hotel room is going to be stressful for him.   There's no good way to prepare him.  He will probably have a good memory of "last time" which will sour him even more.  But most of all, if something happens, we won't have much of an "escape" for him.

I believe most times for inclusion but this time....I just have a bad feeling about this.

I hope I'm wrong.

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.

T minus Less Than Two Days

My one brother in law should be bringing my other brother in law up here Thursday.

And then he will be here for about a week and a half visit.

Am I anxious?  In some ways yes.  But I also know that if I worry, what will go wrong will be something I never even thought of.  So I try to calm myself with that thought.


 As far as I know, this will be the first trip "bil" has ever taken (about a 3 hour car ride each way) without his mother along, although he has visited up here maybe 20 times in his life.  And trust me, bil remembers each one in great detail.  That is one thing I've always been fascinated with, his almost photographic memory.


Bil has stayed at my other brother in law's a number of times, but never for this long, and again, never without his mother.  I don't know if this will stress him out.  I don't have any "history" to go by.

One thing I have never compiled, for various reasons, is a document we can go by, which details my brother in law's wishes, his likes, his dislikes.  Sure, we know his favorite foods and his favorite TV shows.  But there is a lot we really don't know about him.  My mother in law (who he has always lived with) has never really communicated these things to us and if she left us suddenly.....  I hope that my in laws, or us, can notice a lot of things during this visit.  Even little details like the brands/flavors of toothpaste, could mean a lot one day.

That's one of the disadvantages of living 150 miles away...we just don't have the everyday interaction.