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.
Friday, July 13, 2012
Thursday, July 12, 2012
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.
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.
Tuesday, July 10, 2012
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.
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.
Saturday, July 7, 2012
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.....
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.....
Friday, July 6, 2012
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.
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.
Wednesday, July 4, 2012
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.
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.
Sunday, July 1, 2012
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.
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.
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