Sunday, March 27, 2011

Bil and the Birthday Party

It's been a very eventful week, including a medical event (nothing serious, just painful) and being out of town.  But, we did spend last weekend with Bil as our houseguest, his mother staying in a motel nearby.

It went well, I think.  I'm glad Bil is choosing to sleep, when out of town, away from his mother, but the way he thinks, I don't know exactly what his motives are.

The reason why Bil was staying with us was so Bil and my mother in law could attend a party.  At the party, for a family member, Bill sat apart from everyone until his mother coaxed him into sitting with the rest of us. 

This was the second party in two weeks that Bil and us attended.  This one was at a restaurant.  The previous one was at a relative's house (a birthday party) and Bil, again, just sat away from everyone.  We saw him wandering around a little.  I was concerned about noise levels (it was very echo-y in that house and even I was being disturbed by it-I do have some sensory defensiveness issues myself) but Bil made it through.

I don't think he really enjoys these kinds of situations but he tolerates them, I think, because he wants to be included in the fun.  And, for all my complaints about my mother in law, I will say that she has always encouraged him to be with her at these events.

We probably won't be seeing Bil again until Easter.

Thursday, March 17, 2011

A Happy St. Patrick's Day

Fortunately for Bil, and for all of us, my mother in law is slowly but surely getting better.  She is driving again, and getting around a lot better. She can do her own food shopping now.  She has a device she calls a "mallinator" which I can't find on google, but she is using it for her mall walking, and she says it works a lot better than a cane.

We are hopefully going to see her later in the week.

Of course, she is only one more fall away from disaster.  But for now, we have a reprieve, some breathing room.  How much, I don't know, after reading this article.  Apparently, canes and walkers can be dangerous on their own, too. But, as far as I'm concerned, it is good that she is out and about, and has accepted that she needs mechanical aide.  I only hope she doesn't fall again.

Sunday, March 13, 2011

Budget Surgery and MSC Surgery

Spring will be here in another week.  Time to clean out the mental clutter and try to stay on track.

Bil's Medicaid Service Coordinator is having major surgery in a couple of days and I can absolutely kick myself (because I knew this for more than three weeks) because we never got in touch with her regarding what the upcoming Medicaid cuts are going to mean for Bil.  This is a very major surgery, that could have major ramifications for her if something goes wrong.  I'll need to be in contact with my mother in law later in the week.  The MSC and my mother in law have become...well, I wouldn't call it "close" but my mother in law is such a giving person.....sometimes too giving, as I will perhaps blog about one day soon.

Nor do I have any idea if anyone at the local ARC has contacted my mother in law about the cutbacks.  My mother in law (who was raised in an age when it was a total shame to have to depend on the government for anything) prides herself that she hasn't used the availability of Medicaid for anything not necessary.  I know if my mother in law had not had to financially, she never would have allowed us to apply for Medicaid for Bil, period.  But that doesn't mean Bil has benefited (for example, getting dental care for the first time in many many years) and the MSC was instrumental in getting that for him. 

Before he had the dental care (which I advocated for with the MSC) Bil had such bad breath that I could not even hardly stand to be in the car with him.

Sadly, the MSC has never been able to obtain "reshab" services for Bil to get him the training in simple life skills he so much needs.  Things have been a bit "out of whack" since she fell back in January and we've had so many issues surrounding her, that Bil has receded into the background for a while.

That, of course, is a very big mistake, given that my mother in law's well being directly impacts Bil's life.

But right much going thing at a time.

Thursday, March 10, 2011

Reading Between the Lines

Spent a little time with my mother in law this past week.  Not as much as I would have liked, but the weather report was scary, and we left early (and, a good thing too.) after a brief visit.

To recap, my mother in law is recovering from a fall.  She lives with her 50 plus year old son, who has autism.  She had refused to have him leave for a supported living situation several years ago, wanting him to be with her.  I think having him in the same house gave her, a widow in her 80's, a sense of security.  But that has proved to be somewhat of a myth. 

The feedback I heard from family after her latest fall seemed to indicate that Bil was helping her out, at least when asked.  The visit before this one, we went grocery shopping for her.  Bil came along, and without asking, helped to unload the car.  But I still had my doubts.

I was cleaning up the breakfast table, and loading the dishwasher, when I asked her "Is Bil helping you load and unload the dishwasher?" 

This morning, perhaps she was feeling a bit tired.  "No, not really" she said.  And then the confession that followed really surprised me.  "I have to stand over him to get him to do anything" she said.  "And today, I just don't have the energy to do that."

That's what I had suspected.  It must drain her to have to keep asking over and over,probably for him to do even the simplest of things.

So, what do I do with that knowledge?

I remember, a couple of years ago, my brother in law creating a binder with instructions for Bil to do various household tasks. My mother in law thanked him, and then did nothing with it.  Did she realize it would take a great deal of work to train him, patiently, step by step?  I can't blame her for not feeling up to the task.  And we live 3 hours away, which makes consistency in working with Bil impossible.

We tried to get something called "reshab" from his Medicaid Service Coordinator but the local ARC (which does his service coordination) never was able to find a reshab provider that would work with Bil.  Possibly it was because he was already in his 50's.  Children with autism are more easy to work with, I suppose.

So, is there any hope in getting Bil to truly help his mother out?  I sincerely doubt it, and I think she knew it too, but only now is admitting it.

So where do we go from here?

Friday, March 4, 2011

My American Idol

As many in the autism-related community know, there is an American Idol contestant, James Durbin, who has Asperger's Syndrome.  He thrilled me this past week with his performance of Judas Priests' You Have Another Thing Coming.  It's nice to have a rocker in this competition.

James Durbin brings his own style to the competition.  While Bil does not appear to show musical talent, he does love to listen to the radio.  One day, maybe, James Durbin will be on there and Bil will enjoy him.

Many people think of people with Aspergers of  being talented in science ("geeks"), but there are a good number of people on the Spectrum who have talent in music or art.

It's nice to see one of them making it in the neurotypical world.