Tuesday, May 31, 2011

Bil and Weight

This past weekend, we visited my mother in law and  Bil.

Up to now I've made the decision not to discuss Bil's health, because I do want to preserve his privacy. But, it has become obvious that Bil continues to gain weight, despite my mother in law's best efforts.  She eats healthily and tries her best to give Bil healthy foods.  But, he has a sweet tooth.   It seems that food is becoming more and more important to Bil.

Entertainment?  A way to fight boredom?

And, on top of it, Bil won't exercise.  How you get a man with autism in his 50's to start an exercise program is truly beyond my imagination.

My mother in law made an interesting comment. I can't remember the exact words but it had to do with her trying to talk to him again and again about his eating habits.

I know that lecturing him is not going to work. And in the meantime, he suffers from health related problems that are related to his overweight status.

Now what?  How can we reach him?  How much can he understand about the harm he is doing himself?  It's bad enough when you are neurotypical and have weight issues.  But it will be just another item we will have to deal with, sooner if not later.

Wednesday, May 25, 2011

James Durbin Rocks Again on Idol

Tonight, on the finale of American Idol, James Durbin performed with Judas Priest.

James Durbin, the contestant best known for having Asperger Syndrome.  So, of course, he had to become my favorite.  And then he got voted out. (but I know he will be a star, anyway).  Asperger Syndrome should not define him.  His voice rocks!

He did very nicely singing with Judas Priest.

I wonder how much all the lighting on the stage, the noise, the audience, bothers him.  But in a way he is my hero.  He has overcome a lot to be here. 

I hope he enjoyed his rockers' dream come true tonight. 

Tuesday, May 24, 2011

Tornado Alley

Bil loves The Weather Channel, where he can watch weather from a distance.

Real weather, he doesn't cope with too well.

Many were the thunderstorms where he hid, terrified of the thunder.  One thing that used to happen those days was - when lightening struck nearby, it would ring the phone.  Bil was never able to cope with that too well.

The Hudson Valley, where Bil lives, gets its share of thunderstorms.  Tornadoes are rare, but one (a F1, I'm sure) hit his neighborhood back in the early 1970's.  I remember photos my husband showed me of the damage - a neighbor's roof ripped off, a rowboat driven through a tree.  Bil was only a teenager. 

The tornado came down in an empty lot in back of Bil's house.  Now, there are houses there.

With all the severe weather out west, I am a bit worried.  This severe weather will move east soon.  We may get a chance at some of that weather in early to mid June. 

I hope Bil gets through it OK.  Bil freaking out over bad weather is the last thing my mother in law needs right now, truthfully.

Sunday, May 22, 2011

A Cautionary Tale

When I first started this blog, I had some trepidations.  I was concerned, to put it mildly, that people would read the subject matter of this blog and engage in cyberbullying.

My concerns were not so far fetched, as illustrated in this blog post.

I do not leave comments as author of this blog.  Anywhere.  Period.

It is so easy for people, behind the protective walls of the anonymous Internet, to behave in ways they would never behave in real life.  Perhaps they are showing their true character.  Discussion is one thing....this type of thing is something else.

I think I am glad that I have kept this blog somewhat low key, and have not told too many people about it.

I am really, really, glad.

Saturday, May 21, 2011

Who Pays the Real Price for Autism?

Apparently, the mother does.

In this article by Binghamton area advocate Sally Colletti, quoting an article, the mother of a child with autism pays not only an emotional price in raising a child with autism, but a financial price.

In a place like Binghamton, here in upstate New York, that price may be the difference between keeping a family "head" above water in our tanking local economy-or not.

And then, who pays the price? 

This article, of course, is no surprise to any parent with a child with autism, no matter where in the country they live.

Bil's mother may not have paid this price directly.  Bil was not her first child, and she had already quit work at the point (I believe) when he was born. He was born back in the 1950's when mothers were expected to stay home. 

Of course, his father paid a price too.  I don't talk much about Bil's father because he's been deceased for a number of years-but he had to work more than one job through a lot of his work career to keep his family's "head" above water.  But Bil's mother was the one who bore most of the burden:  and, no matter how much times have changed - this still is the case.

Friday, May 20, 2011

Epilepsy and Autism

Thanks to local advocate Sally Colletti, I have discovered a new resource for Binghamton parents of children with autism. 

There is an article  that briefly discusses autism and seizures.  There is definitely a connection, and with that, I need to tell a story about Bil's past.  (I don't want to reveal details about Bil's health to protect his privacy, but I believe the following is not a betrayal of my policy.)

Years ago, Bil had an evaluation (one of several he has had during his lifetime.)  As a result, Bil was put on a medication.  As a family member of mine had epilepsy, I know a little bit (just a little bit) about epilepsy, and I immediately recognized the name of this medication.  It was a medication given to people who suffered from seizures.  This puzzled me because, to the best of my knowledge, I had never seen Bil have a seizure.

I know very well that not all seizures are "obvious" but I've never seen Bil staring into space for a few seconds, or other symptoms of what are called "absence seizures". (Years ago, when this evaluation was written, it probably would have been called petit mal seizures, which is the name I knew them by in my childhood.)  Nor have I seen evidence of tonic clonic seizures, the type many people not in the "epilepsy community" associate with epilepsy.  In my childhood, these were called "grand mal" seizures.

Of course I am a layperson, and I am mostly familiar with the type of seizures my family member had. (they were never fully controlled by medication.)  But my point is:  I had never had any reason to suspect this with Bil.

So I asked my mother in law about this.  She told me an interesting story (deleting the term"epilepsy").  Bil was put on this medication and why was never explained to her.  He started having strange symptoms, which (as it turned out) were side effects of the medication.  My mother in law, at some point, saw a TV show, associated the symptoms with the medication, stopped it, and Bil was fine after that.

I was told later on, in further investigation (by an advocate) that this was probably a case of misdiagnosis.

It still is true, however, that epilepsy and autism are interconnected.  A pity.  Epilepsy is so feared (and rightfully so-it does have the capability of killing people) but is also dreadfully misunderstood - and for a family member to face both epilepsy and autism:  well, it is just another burden for families.

Wednesday, May 18, 2011

Rollercoaster - Say What?

I feel like I'm perched at the very top of a roller coaster. Any day now the car I am riding in is going to suddenly be going down this 75 degree embankment at 100 miles an hour.  I won't be strapped in.  I'll be hanging on for dear life.  I have this feeling but I don't know why.  I trust my feelings.  It's not a good feeling.  It's not anxiety.  I don't know what it is.

It may be the feeling that...one more fall, one more stroke (on the part of my mother in law) and I'm going to be riding that coaster.

As part of this feeling, I know I have to think about changing the focus of this blog.  For the past few months it's been just churning around. going nowhere.  I am participating in a writing contest (30 entries in 30 days) and I am learning the importance of regular posting.  I'm not doing it here.  I'm not doing this blog right.  This blog has a definite theme (the life of my brother in law) and I'm not living up to it.  I'm not doing it justice.

At the same time, I don't want to give up the work I've put into this blog so far-over 140 posts now.

I really can't discuss this with the cyberfriends I've made in the contest.  For all I know, some of them have chldren or sibs with disabilities.  But I don't want to make this blog too public.  I'm at loose ends.

I could change the emphasis. I could make an attempt to get readership.

Whatever I do, I am at a crossroads.

Maybe I will hone my skills for the rest of the contest, and revisit this again next month.

Yes, that's the ticket.

Put things off again.....

Sunday, May 15, 2011


Bil, like many people with autism, suffers a lot from anxiety.

If you take him on a trip to, for example the mall, he immediate becomes anxious if you don't take the regular route.

If he asks you to take him to the mall he is fine.  If, after the mall, you decide to go somewhere else (rather than just not straight home) he becomes anxious.

Bil lloves the Weather Channel.

He hates the actual weather.

Bil is very frightened of thunderstorms, as I've blogged about before.  He's frightened even of rain; I remember one time he was supposed to come up here when a family member had been in a car accident and he was so anxious because it was raining that my mother in law had to make arrangements so he wouldn't have to come the 150 miles.

He will stay in a motel room but he has to have his own "room" ie. he like in a suite.

His brother has a lake cottage.  He is very anxious about staying there, I think because he can't have his own room. (not enough space)

With all the changes to come in his life in the future, I can worry about his anxiety.  It is going to affect all of our lives one day.

He always wants to know exactly when we are visiting next (even to asking as soon as we get in the door) and if he can't tell him, he becomes a little anxious about that.

I didn't know Bil as a young child so I hope  the anxiety has gotten a lot better.  But it definitely impacts his life-a lot.

We had hoped to get him something called 'reshab' services to help train him into ways to deal with anxiety, but with budget cuts it isn't going to happen.

Saturday, May 14, 2011

A Friend's Future

I believe I have mentioned that one of my son's friends has Aspergers Syndrome.

This friend graduated high school last year, and went out of town to college in a special one year program.  He should be graduating in the next week or so.

Then what?

That will be very interesting to see.  Of course, I can not compare him at all to Bil.  They are two different people, operating at two different levels.  I know the "friend" may be able to be independent (time will tell on that):  as for Bil, we agree, and his Medicaid Service Coordinator, agree, that will never be possible.

This friend is very mechanical and hopes to make his living in plumbing or a similar trade.  I wish him the best of luck.

I still can't help but be a little wistful, though, for "what may have been"....if Bil had been born into a different age, a different world.

Friday, May 13, 2011

James Durbin Eliminated - So Now What?

James Durbin, the very talented American Idol contestant who happens to have Aspergers Syndrome (and Tourette Syndrome), has been eliminated.

I've only been watching the competition on and off, but a lot of people I know who have been following the competition were shocked.

I guess the main consolation is that you don't have to finish first in order to be a star  Sometimes it seems it's better not to finish first.  Let's see....Daughtry, Jennifer Hudson, just for starters.  No, we haven't seen the last of James Durbin.

Has having Aspergers won James Durbin more fans?  I suspect it may have.

Bil?  I don't think he watches American Idol.  His "thing" is more science, especially weather...and, of all things, horror.

So this really doesn't have a lot to do with Bil, but.....without my association with Bil, would I have cared?

I suspect not.

Tuesday, May 10, 2011

Autism and the Tornado

On CNN last week, I saw an interview with a teacher in Tennessee, Ira Canada, who teaches children with autism.

Recently, he faced the possibility that his school would be hit by a tornado.  How would his students fare?

It was fascinating to hear how he prepared his students.

He had enough warning to know there was a big possibility of severe weather that day.  So he started his students' day with social stories dealing with natural disasters.  And sure enough the tornado hit.

Apparently his students weathered it (no pun intended) well.  One of them even comforted a non-disabled peer.  I have known "non-disabled" children who would not do such a thing.

I have a lot of admiration for this teacher.  I know how scared Bil is of thunderstorms.  I know how children with autism (I've had a small amount of exposure to this) react to loud noises.

It's so ironic that Bil loves the Weather Channel and studying the weather - in the abstract.  I hope he never has to "weather" a tornado.

Monday, May 9, 2011

A Great Loss for Local Special Olympics and Thoughts about Bil's Physical Fitness

Bil does not participate in Special Olympics.  But a young man living across the street from me does, as do the sons of two mothers I know.

As our local paper described today, there was both "joy and sorrow" at our local Special Olympics yesterday with the untimely death of a dedicated volunteer.

Special Olympics is a wonderful program, and has done a lot for the young men I know who participate in it.

It made me think of Bil and how inactive he is.  He has asthma but with modern medicine I know that doesn't stop many people (since I do not have asthma, I can't speak about that firsthand).  Bil has memories of when his asthma was not that well controlled, and he refuses to engage in any kind of physical activity - except mall walking, because he used to do that with his mother when she was able to mall walk without assistance.  But he doesn't walk very quickly.

He's overweight and has some health issues that would be helped if he could lose weight.

I really don't know what (once we are responsible for Bil) what we will be able to do.

It's so hard to establish a new routine for people with autism.  Given Bil's age, I doubt seriously we'll be able to change his inactivity.  And yet, his life may depend on it.

What to do?

Sunday, May 8, 2011

A Thoughtful Time

I've been silent for a little while.  There have been several reasons.

First, I have been preoccupied by a number of things.  My back going out again.  The death (expected, but still food for thought) of a friend's husband.  A writing project I've gotten involved in.  The job loss of my brother in law's wife (the brother in law who doesn't have autism that is.)

And, on Friday, my brother in law lost his job.

That wasn't totally unexpected either but....he has had so many close calls.

He and his wife both worked for a major employer in this area.  She had worked for this company (and companies before they were bought up by the present company) for some 30 years.  He had been there even longer.

This is not a good time for our economy, for many of our citizens, including our most vunerable. 

How the events affecting my brother in law and his wife will end up affecting Bil, I don't know.  When a pebble drops into a pond, the ripples spread out wide.

Only time will tell.