Do I Make My Struggles For Bil Public?

Up to now this has been somewhat of a private blog. But there are various blogging challenges I can join and if I did, I would have the opportunity to gain some readership for this blog.

But if I do that, I can never go back.  This blog will be public, and Bil, in a way, will go public with it.

I don't know if I want to do that to him.  I have the right to do whatever I want for myself. But Bil can't give informed consent.  It's as simple as that.

I think I made up my mind writing this post.  I stay private.  I don't have any right to expose Bil to the world.  He doesn't know that I am writing this blog, and I don't think he would have the capacity to understand what I am trying to accomplish.

So.....isn't it funny how you can expose yourself to the world on a blog but still stay private.

Is there anybody out there in a similar situation to me?

I guess I will never know.

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.

Overworked and Overloaded

Well, my husband called Bil's Medicaid Service Coordinator and got "the scoop".  I'll blog about what my husband was told in the coming weeks.

What was remarkable - or, sadly, not remarkable at all - was the MSC's comment about his/her workload.

This MSC has almost 40 clients now. Bil is one out of  almost 40. 

Can you imagine someone having that kind of case load?  In New York State, a Medicaid Service Coordinator is a person who assists persons with intellectual or developmental disabilities in gaining access to necessary services and supports.  The job is quite complicated.  He/she must use a  "person centered planning process" and be knowledgeable of all kinds of state and local programs.  There is paperwork - an awful lot of paperwork.

The Medicaid Service Coordinator is supposed to be an advocate for the disabled client.  (I believe the technical term is "consumer" but I will use "client".)  The ideal is:  the client tells the MSC what is needed and the MSC somehow makes it happen.  Of course, this is quite difficult in real life.

And oh yes, the client has to be on Medicaid.  Doesn't matter if  he or she is a millionaire's child.  He or she has to be eligible for Medicaid (and meet other criteria) to be eligible for this service.

At one time the MSC had to visit the client once a month.  Now it is down to three times a year.  A certain percentage of the visits are home visits.  Otherwise, the client can be seen at work or somewhere else convenient to both.

I would really like to give a shout out to Medicaid Service Coordinators.  I can't believe they make huge sums of money.  It has to be dedication that keeps them going.  I suspect a high percentage of MSC's have a family member (child, parent, sibling) with a disability.  Just an educated guess.

And now, with that in mind - I will write more about Bil's situation in the coming weeks.

The 300th Post

Tomorrow my husband has an appointment to speak to Bil's Medicaid Service Coordinator.

We have so many questions to ask.

1.  What can we expect with continued Medicaid service cuts?
2.  What about housing lists for Bil? (A sore subject with his mother, but we have to face this.)
3.  What about the upcoming People First waiver?
4.  (related to #2) will supported housing be cut? 
5.  And last but not least, what can we do to help Bil?

It is so hard to peer into the future.  With this, my 300th post, I find that in a lot of ways, we are no further along with advocating for Bil than we were in post #1.  It's like hiking through quicksand!  Has there been ANY progress at all?

I hope we will find out tomorrow.

Autism and Aurora

Thank you blog Autism Policy and Politics, for alerting me to this.

I never thought I would be writing about the events in Aurora, CO.  If anything, if I had a genie, I would make a wish that the alleged shooter be made invisible, and that the media would never write another word about him.

So why am I writing about "he who caused Aurora" today and not about Bil?

It would seem that a morning TV talk show person made a statement.speculating about the mental condition of this shooter.  He said:

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society -- it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale" and "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses -- they can even excel on college campuses -- but are socially disconnected."

Well, some of this is true.

But diagnosing someone with autism, or Aspergers, not as a mental health professional but as a journalist?  What is his proof?  What is gained by this?

I know sometimes I play at "does this person have autism?" based on my knowledge of Bil, and other young people with autism. But never would I make my speculation public.  And, on top of this, autism is a spectrum disorder.  It manifests in so many different ways.

I know a young man with Aspergers who will smile at you, and even crack jokes.

I don't feel Bil could intentionally be violent.  (this is not to say a person with autism might react to a stressful situation, especially if they were being bombarded by sensory stimuli- but it is situation specific, and not a personal lashing out.)  And Bil craves company, but in his own way, and on his own terms.

This journalist, who has a child with Aspergers, has just tarred the name of Aspergers.

And one more thought - if it turns out that the allleged shooter has Aspergers - it does not mean all mentally ill people have autism.

If he doesn't retract this, we are back to the era where people with autism were mentally ill - and confined to institutions.

Thinking of Ourselves First

 In September of last year, our area, along with many other areas of upstate NY, was flooded.  We suffered a one-two punch between Tropical Storms Lee and Irene.

Not long after the flood waters receded and we started our recovery here in upstate NY, my mother in law called.

When are you coming down here next, she asked.  I've received some papers in connection with Bil, and I need you to look at them.

Unfortunately, it was impossible for us to come.  We had been impacted by the flood and had to worry about ourselves.

What ended up happening?  Well, she hung onto the paperwork and waited until we could come.  And as it turned out the paperwork had a deadline, which she missed.  I had to do some emailing to "make it all right".

**Sigh**

Thus goes long distance caregiving.

Why am I writing about this now?  Because, in a couple of days, my husband (after a lot of emailing) is finally going to talk to Bil's Medicaid Service Coordinator over the phone. We were supposed to do this in September of 2011 - but life intervened.

Amazing to think that it took us 10 months to get to the point where we could do this.  No, not because of being physically impacted.  I think there was a lot of psychological stuff going on.

I'm glad we are back on track, though.  But sometimes advocacy is impossible. Sometimes a caregiver just has to think of him or herself first.

A Penny for His Thoughts

Like so many with autism, Bil suffers greatly from sensory overload.  He can control it a lot of the time, but sometimes it just becomes too much for him.

Fortunately, he has figured out that if he is in a place he is familiar with, he can remove himself from the situation.

Today, Bil was visiting up here.  We didn't see very much of him.  Normally he would sit in another room and watch the Weather Channel. But this time, he disappeared for most of the visit.  I think he went to the bedroom where he sleeps during these visits, and (somehow) occupied himself.

I can feel for him because I know he was looking forward to this time with the family that lives here in upstate New York.  Yet, he wasn't able to be near us.

I think there was just too much noise for him this time.

He did join us for meals, but we were hoping to involve him in meal preparation. We weren't able to.

He also joined us when we were getting ready to leave to go to our house. (He was staying with another family member).  He stood silent.

Again, although he is verbal, it is difficult for him to communicate with us.  I really wish I could give a penny for his thoughts.

The Missing in Action Sibling Survey

A couple of weeks ago I blogged about a New York Sibling Survey - and it still isn't live, as of today. 

Nor has the message my husband left on their phone on Independence Day been answered.  This doesn't surprise me.

What will we do? Probably wait a couple of more weeks and try again.

I really wonder why this survey, which was supposed to go "live" in June, is still missing in action.

Once again:  siblings get no respect?

No voice?

One reason I suppose I have to somehow keep on blogging.

Almost at 300

The 300th post is so close. In a way, this is a milestone, given that I don't post here all that regularly.  And with this post, we await a visit from Bil this weekend.  He will be coming with several other family members.

We don't know yet if he is going to stay with us. But the weather is going to be good, so Bil won't have to worry about his dreaded thunderstorms.

What will happen during the visit of the siblings?

Probably what happens in the other visits.

We sit and socialize with family and Bil sits wherever there is a TV and watches the Weather Channel.  We might as well be invisible, except for dinnertime.  At dinner, he eats and runs.

Family sometimes tries to get Bil to spend a little more time with us but if he does, you can tell he isn't very happy about it.Well, he might be, but that's not how he appears to behave.

This time around, we are going to try to get Bil to help some with the food preparation.  My sister in law had some success with that last time he came up here.  He is willing to do this as long as there is no cooking involved.  He is terrified of the microwave oven and, for that matter, the cookstove.

Last time he was here, it was because of Hurricane Irene.  Not good memories, and I hope he isn't anxious because of that.

We'll just have to see how it goes.

A Sister's Perspective

I wish my husband had written about Bil when they were both young.  I wonder what he would have said.

That's why I enjoyed this post by a teenager who has an older brother with autism. 

I remember my mother in law's hurt one time when she discussed her childrens' relationship with Bil when they were growing up.  I think she would have loved for them to take on some of her burden.  Keep in mind that in the 1970's my mother would not have had any support.  Not from her pediatrician, not from the schools, not from support groups.

She looked to her children.

And her children wanted to be children.  They wanted their lives.  I can sympathize greatly with my teenaged husband to be, trying to be a "normal" teenager and not the sibling of someone with autism.  By the time his family knew Bil had autism (keeping in mind it was NOT a common diagnosis in those days) my husband was already out of the house and living out of state.

Today, I'm glad to say, sibling have support. 

I encourage you to read the post I linked to.  I'd also love to see what she might say in 10 years.

And the other thing?  I hope that her Mom and Dad have made plans for her brother Marshall, and not left things up in the air the way my mother in law has.  Even to this day, in her 80's she still can not face the fact that she will leave her son behind. 

But that is a story for future posts.

The Role of the Weather Channel

Yesterday, I blogged a little about Bil's habit of,when visiting one of his relatives, just disappearing into the nearest room with a TV and watching the Weather Channel.  He comes out only for meals - and, may I add, he has a most uncanny ability to know when food is ready to be served. (makes you wonder what kind of cues he picks up on.)

I've always been interested in knowing: What happens if there is no Weather Channel?

My mother in law found out the other day.

She decided to visit a friend, and took Bil along.  The friend is someone Bil has known for years.  Bil has met her time and again. But I'm not sure Bil was ever to her house (or apartment, I am not sure).

Anyway this friend of the family does not have cable TV.  So Bil had to sit there.  The friend was a gracious host and served a very nice meal. (Have I mentioned how much Bil likes to eat?) I'm sure she is very kind to Bil as she always has been.  She knows the type of person Bil is.

So what happened without the Weather Channel?

Bil was very uncomfortable the whole time and couldn't wait to leave, or so my mother in law told my husband after the incident.

This isn't a "Rainman" situation where a show was coming on at a certain time, and Bil had to see it.  Although, on a trip we took with my mother in law and Bil once, I saw that in action.

I will blog about that another time.

Temple Grandin Talk

Temple Grandin gives a talk - about 16 minutes long - on various topics, such as our need to have all different kinds of minds working in our society.

She talks especially about the educational system and what they could be doing better. But there was also a section in her talk about how she, and other people with autism, think.

Oh, if I could only know what Bil is thinking.  His Medicaid Service Coordinator contacted me the other day.  He is taking some time off in the next month, and plans to come up here. (we already knew about that but the trip is still pretty up in the air).

You would never know it by watching Bil's behavior - he will disappear into the nearest room with a TV, turn on the "Weather Channel" and appear mainly for meals.  So what is he thinking?

Back to Ms. Grandin's talk.

She flashes a slide showing a "S" and a "H" - made up of little and big S's and H's.  Someone with autism and someone without autism may process this different, possibly seeing only the big letters or the small letters.

So we know that Bil processes a lot of information differently. But why in blazes would he be excited about a trip, and then sit around and watch TV all day?  Isn't it the same channel that he can get at home?

What is the point?  Oh Temple, I wish you could tell me.

It's a worthwhile talk, by the way - touching on a lot of different topics.  If you've seen the Temple Grandin movie originally shown on HBO, you've already seen some of this material.  If not, treat yourself to this talk.

If only Bil could give a talk.

Autism - Hiding in Plain Sight

As scary as Bil's future could be, at least one thing happened to him that didn't happen to many other people in their 50's, 60's, and 70's and beyond.

He was diagnosed. And, thanks to a family friend, he was diagnosed as an adult but before the age of 21.

If he hadn't been, the services he could have received in his native New York State would have been limited.

What about all the adults who were never diagnosed properly? It is a scary story, now being told by the LA Times.

They are adults with autism - hiding in plain sight.

Some have lived their entire adult lives in institutions, diagnosed as mentally ill. Schizophrenia is a favorite.  Also popular (the article uses this term) was the diagnosis of mental retardation.

Some are on the streets, homeless.

Some can function only thanks to friends - guardian angels as you will.

Some are finally diagnosed, after relatives are diagnosed.

It's hard to believe, in this day and age of the "autism epidemic" how these men and women fell through the cracks of our society but their world, and the world of Bil's childhood, was a very different place than the world of today.

The link above is to a harrowing story.

It should be a must read.  Read it, and be horrified.

I read it, and was thankful Bil did not suffer this fate.

Support for In Laws

I accidentally stumbled on a support organization for sibs of people with disabilities, located in New York City.  We live in upstate NY, not that close to NYC, but that may or may not matter.

This "NY Meetup" is a place to meet and network, apparently - it is not a place to vent, at least online.  There is even a button where you can use Facebook to find out if any of your Facebook friends are a member.

First, it got me to thinking about my mother in law, who had to "do it alone" in raising a child with autism back in the late 60's and early 70's.  There was absolutely no support for her.

She has never expressed any interest in networking with other Moms.  Perhaps, at her age, she doesn't think it is necesaary.

Next, it got me to thinking about male vs. female. My husband has never been that interested in support groups. And, interestingly, looking at the list of members - there are men, but it looks like the majority of members are women.

It may be a stereotype, but it seems (in my experience) that women in general like to have the support of other people in their particular situation, where men see themselves more as solitary problem solvers.  It's almost like asking for help is like asking for directions - not manly.

Not better or worse styles, but just....different.

And last but not least:  I felt a pang seeing another support organization for sibs.  There are organizations to support sibs, and organizations to support parents.  It's a familar pang -when will I ever find support from other in laws?

I can't be the only one in the situation of having an inlaw with a disability.

Maybe I'll (grin) have to make it up myself.

Anyone else out there married to someone who has a sib with a disability?

Casting my pebble into the waters.....

Real Human Love Exists in a Better Society While we Live with the Handicapped

A little over a year ago, I blogged about the plight of people with autism and their families in South Korea - a place where treatment of autism is still in the dark ages and families must endure shame - and worse.

Now, there is a South Korean marathoner with autism.  CNN did a feature on him not too long ago.  Slowly, attitudes about autism in South Korea are changing, partially due to this young man's accomplishments.

Why should we in the United States care?  Because what affects people with autism in any country affects us all, in some way.

I wasn't able to find that much more about this young runner via an internet search, but found that a 2005 film had been made on this young man.

I also found an article (in English) on a Japanese site called "Mindan News" about the movie.

One quote from the Japanese article, I think, said it all.

"Real human love exists in a better society while we live with the handicapped."

The translation may be a tad "politically incorrect" but, as the sister in law of a man with autism, I applaud it.

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.

Coming out of Hiding

I've left this blog fallow for some four months, trying to come to a decision.  Should I continue? Or should I abandon this blog?  Abandoning it would be so easy.

But that's not how I'm made.  I like to finish what I've started.

July 1.  A new month.  A new half of the year.  A new start. 

Yes, I am going to restart this blog, I say a bit bravely (I hope).

 I changed the name of the blog, from "A Special Brother In Law" to "My Brother in Law with Autism". 

I still don't know if I am going to "go public" with this blog i.e. participate in blogging challenges.  At this point in time, I don't want to.

I sometimes vent my frustration here, and I continue to.  If anyone who knows me discovers this blog, so be it.  After a lot of thought, I have also come to that decision.  The Internet is not a place to hide.

Who knows, I might even open a Twitter account for this blog.

I thought about posting every day.  I don't think that will be realistic. 

I really hoped I would be able to teach others by example - being a help to the several families I know locally who have children or young adults with autism.  Well, I can't help them if I don't post.


But, I am still going nowhere fast. That much hasn't changed.  Bil's situation is about the same as it was back in February, and I am still soooooo frustrated about that.

I have a feeling, though, that this is going to change in the next few months.  And I want you to be along for that ride.