In Part 1, I started to blog about Bil, one day, having to live apart from his elderly mother.
We had a coming attraction about his ability to live on his own when
his mother became sick a bit more than a year ago, and had to be
hospitalized. The hospitalization was followed by rehab. At her age,
lying in a hospital bed causes rapid physical deterioration.
Bil
did not want to live with one of his brothers. He didn't mind
being by himself. I'm sure that is because he was in control of his
environment. He could keep the lights dimmed, the TV on as he chose,
and do what he wanted.
There were just a few problems.
He would not take out the garbage unless prompted. And, with everything connected with his mother's hospitalization, we didn't realize for a couple of days, that no one had taken the garbage out. Normally, taking the garbage out is Bil's task- but he does it under his Mom's direction.
There was no direction now. He didn't take the garbage out.
We walked into the house, some two days after my mother in law was admitted to the hospital, and - it stank. Stank as in bad food scraps, and more.
Bil seemed oblivious to the smell. So we had to tel him to take the garbage out.
He never did learn to take the garbage out without prompting. I would have thought that, after a while, it would have become a part of his routine, but it never did. So this was just one of a number of experiences we had, being fully responsible for Bil for the first time.
It won't be the last time.
To Be Continued.
Friday, January 27, 2017
Friday, January 20, 2017
Housing for Bil Part 1
"Bil" had his annual review recently, and the topic of housing for Bil, once my mother in law can no longer care for him, came up.
Let me backtrack a little Bil lives with his mother. He always has, for the almost 60 years of his life. For almost all of them, he lived in the same house. In 2015, he and his mother moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay in the apartment due to physical or health issues, the State of New York will not let him stay there by himself (which would not be a good idea, anyway), because Bil has a developmental disability called autism. At this point in his life, he can not live independently. He doesn't have the skills.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his nearby siblings. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted. No wild parties - just being on his own.
We knew he needed our support, and we did live in the area. We would check in on him, make sure things were OK, bring food, and take him out when needed.
There were just a few problems, and they became apparent quickly.
To Be Continued.
Let me backtrack a little Bil lives with his mother. He always has, for the almost 60 years of his life. For almost all of them, he lived in the same house. In 2015, he and his mother moved up here to be closer to two of her other children, and they moved into an apartment in a senior complex.
Once his Mom can no longer stay in the apartment due to physical or health issues, the State of New York will not let him stay there by himself (which would not be a good idea, anyway), because Bil has a developmental disability called autism. At this point in his life, he can not live independently. He doesn't have the skills.
We had a coming attraction about his ability to live on his own when his mother became sick a bit more than a year ago, and had to be hospitalized. The hospitalization was followed by rehab. At her age, lying in a hospital bed causes rapid physical deterioration.
Bil did not want to live with one of his nearby siblings. He didn't mind being by himself. I'm sure that is because he was in control of his environment. He could keep the lights dimmed, the TV on as he chose, and do what he wanted. No wild parties - just being on his own.
We knew he needed our support, and we did live in the area. We would check in on him, make sure things were OK, bring food, and take him out when needed.
There were just a few problems, and they became apparent quickly.
To Be Continued.
Saturday, January 14, 2017
Time To Take Supports Away #WYHO
Yesterday, my husband, who is the guardian of his younger brother "Bil", who has autism, went to Bil's annual review at the program he attends three days a week. Accompanying him were two other family members.
It wasn't what we expected, but we have learned to expect the unexpected.
We were told that Bil was about to lose eligibility in the day program.
You see, in the United States, programs for those with disabilities work something like this:
The family or other advocate works to get the person into a program that will benefit him. Finally, at some point, you may be successful in getting the individual (let's call that person a "consumer") into the program.
The program gives the consumer (Bil) supports. The program works with the individual. The individual improves. And so, the program (the support) is taken away.
Does this make sense? Let me give an example. You have a person who is sight impaired. So you give the person a white cane (aka a long cane, or a probing cane) and teach him/her to use it. With the support of the cane, the individual can sense obstacles, walk and get out into the community, sensing what is around and gaining confidence.
So now, would you take the cane away?
What had made "Bil" eligible for his program was his lack of social skills, something that is part of the definition of "autism". Within the program, using cues and other strategies, Bil did improve his social skills - within the program. So now, time to take the supports away. Well, he still has the disability. Without the program, he will sit in his room and watch TV all day, instead of exercising his body and his mind, and interacting with other people. He will backslide. It's similar to what happens to grown children with autism who turn 21 and age out of their school supports. They lose the gains they made.
Bil will lose what he worked hard to achieve, without those supports. Not only that, but the people who run the program love having Bil. They are genuinely distressed. Bil loves coming to the program because it's a positive part of his life. He knows the people there want him. So, as the expression goes, let's pull the rug from under him.
People with autism need positive experiences and encouragement. Does that end now? A support does not remove a disability. It enables the individual to achieve despite the disability.
Today's cue in Write Your Heart Out was "This I promise you.".
Bil, this I promise you. We are trying our best to keep you in this program that you love.
It wasn't what we expected, but we have learned to expect the unexpected.
We were told that Bil was about to lose eligibility in the day program.
You see, in the United States, programs for those with disabilities work something like this:
The family or other advocate works to get the person into a program that will benefit him. Finally, at some point, you may be successful in getting the individual (let's call that person a "consumer") into the program.
The program gives the consumer (Bil) supports. The program works with the individual. The individual improves. And so, the program (the support) is taken away.
Does this make sense? Let me give an example. You have a person who is sight impaired. So you give the person a white cane (aka a long cane, or a probing cane) and teach him/her to use it. With the support of the cane, the individual can sense obstacles, walk and get out into the community, sensing what is around and gaining confidence.
So now, would you take the cane away?
What had made "Bil" eligible for his program was his lack of social skills, something that is part of the definition of "autism". Within the program, using cues and other strategies, Bil did improve his social skills - within the program. So now, time to take the supports away. Well, he still has the disability. Without the program, he will sit in his room and watch TV all day, instead of exercising his body and his mind, and interacting with other people. He will backslide. It's similar to what happens to grown children with autism who turn 21 and age out of their school supports. They lose the gains they made.
Bil will lose what he worked hard to achieve, without those supports. Not only that, but the people who run the program love having Bil. They are genuinely distressed. Bil loves coming to the program because it's a positive part of his life. He knows the people there want him. So, as the expression goes, let's pull the rug from under him.
People with autism need positive experiences and encouragement. Does that end now? A support does not remove a disability. It enables the individual to achieve despite the disability.
Today's cue in Write Your Heart Out was "This I promise you.".
Bil, this I promise you. We are trying our best to keep you in this program that you love.
Saturday, January 7, 2017
A New Year, A New Me?
The driving force of your life
Three things I’d do differently this year
I've never attempted to address two writing prompts to the same post, but 2017 is going to be a year of challenge for all of us. A President will be taking office on January 20 who is determined to make a lot of changes, and some of these changes may not be good ones for our family.
So today, I am participating in two linkies.
As my readers know, my husband and I are responsible for "Bil", a man in his late 50's who has autism. Up to now, Bil has followed the courses that society has set out for a man with a developmental disability. For many years, Bil worked in a sheltered workshop in the county where he grew up in downstate New York.
But, when my mother in law, who is in her late 80's, needed to be closer to family, Bil ended up living several miles from us in a small city in upstate New York.
Now, it is time to seek new directions for him in this new year.
Right now, the driving force in my life is an attempt to find some balance between working full time (as I approach retirement age, I have no interest in retiring), blogging, and helping my husband with the need to help increasingly with both Bil and his mother. I can not be totally swallowed up by this, and I can't let my husband be swallowed up, either. I am determined to do what is necessary but remain my own person. It won't, obviously, be easy.
With sheltered workshops being phased out, Bil hasn't worked since mid 2015, and it now appears that he never may work again. But, at the same time, new opportunities may be opening for him. He has been participating in a day program two or three days a week, where he engages in various physical and mental activities. You can see him starting to question things. In the last Presidential election, in fact, he voted the opposite of his mother (something she wasn't happy about, I could add.)
So these are my three things I will do differently this year.
1. For myself, I will educate myself more in how we can find help for Bil in finding increased independence for himself.
2. I will take better care of myself. I allowed myself to gain 10 pounds, and am on the verge of becoming overweight once more. For the sake of my health, this must be reversed.
3. I am going to reevaluate what I want from this blog. Do I want to try to use it to blog a book? I only have limited readership, so increasing the readership may have to become a goal. I may find myself joining the Blogging from A to Z Challenge - more on that in the coming
Starting today I will join with Corinne at Everyday Gyaan in writing my heart out. I won't do the entire Challenge but will participate in the weekly feature if I can. There is a lot more to the Write Your Heart Out event and I invite you to go to Corinne's blog to get the full details:
Write Your Heart Out #wyho is weekly feature that appears every Thursday with a linky that will be open from Thursday to Sunday.
Three things I’d do differently this year
I've never attempted to address two writing prompts to the same post, but 2017 is going to be a year of challenge for all of us. A President will be taking office on January 20 who is determined to make a lot of changes, and some of these changes may not be good ones for our family.
So today, I am participating in two linkies.
As my readers know, my husband and I are responsible for "Bil", a man in his late 50's who has autism. Up to now, Bil has followed the courses that society has set out for a man with a developmental disability. For many years, Bil worked in a sheltered workshop in the county where he grew up in downstate New York.
But, when my mother in law, who is in her late 80's, needed to be closer to family, Bil ended up living several miles from us in a small city in upstate New York.
Now, it is time to seek new directions for him in this new year.
Right now, the driving force in my life is an attempt to find some balance between working full time (as I approach retirement age, I have no interest in retiring), blogging, and helping my husband with the need to help increasingly with both Bil and his mother. I can not be totally swallowed up by this, and I can't let my husband be swallowed up, either. I am determined to do what is necessary but remain my own person. It won't, obviously, be easy.
With sheltered workshops being phased out, Bil hasn't worked since mid 2015, and it now appears that he never may work again. But, at the same time, new opportunities may be opening for him. He has been participating in a day program two or three days a week, where he engages in various physical and mental activities. You can see him starting to question things. In the last Presidential election, in fact, he voted the opposite of his mother (something she wasn't happy about, I could add.)
So these are my three things I will do differently this year.
1. For myself, I will educate myself more in how we can find help for Bil in finding increased independence for himself.
2. I will take better care of myself. I allowed myself to gain 10 pounds, and am on the verge of becoming overweight once more. For the sake of my health, this must be reversed.
3. I am going to reevaluate what I want from this blog. Do I want to try to use it to blog a book? I only have limited readership, so increasing the readership may have to become a goal. I may find myself joining the Blogging from A to Z Challenge - more on that in the coming
Starting today I will join with Corinne at Everyday Gyaan in writing my heart out. I won't do the entire Challenge but will participate in the weekly feature if I can. There is a lot more to the Write Your Heart Out event and I invite you to go to Corinne's blog to get the full details:
Write Your Heart Out #wyho is weekly feature that appears every Thursday with a linky that will be open from Thursday to Sunday.
- Write a new post in which you free write.
- You’re also welcome to write on the prompts offered in current post and/or add links from your posts from the week.
- Visit and comment on at least two posts before yours.
- Use the hashtag #WYHO to share posts and you’re welcome to grab the badge too.
Friday, January 6, 2017
The Shame of It All
It's so easy to take a stand, but should you?
I did something impulsive on Facebook this evening. On my timeline, I saw a sponsored post from Special Olympics asking people to take a stand on the recent horrific incident in Chicago, where an 18 year old mentally challenged young man was held prisoner by four individuals (I hesitate to call them "people"), who proceeded to torture him, live on Facebook Live.
They didn't even cover their faces.
The victim escaped and wandered the streets of Chicago, bloody and bruised. The four were arrested and are facing charges of, among other things, hate crimes. Bail has been denied.
It makes you wonder which was worse: the torture, the live feed (complete with comments from others) or the fact that these individuals were so proud of what they were doing that they didn't even bother to disguise themselves.
So I impulsively clicked - I really did want to take a stand. Who wouldn't? The "sponsored post" looked to belong to Special Olympics, a most worthwhile organization that promotes understanding of individuals with disabilities, giving them the opportunity to compete in various athletic events, but doing a lot more.
But now I'm wondering if I did right. There are fake sites, and one of them may now have my email address and zip code. It's something called Social Engineering - that something that reaches into your heart, and makes you click something Not Good.
We are cautioned time and again to "Think Before You Click". I did investigate further, and I am comfortable that what I clicked really did belong to the Special Olympics. But still....
What times we live in. The shame of it all.
I did something impulsive on Facebook this evening. On my timeline, I saw a sponsored post from Special Olympics asking people to take a stand on the recent horrific incident in Chicago, where an 18 year old mentally challenged young man was held prisoner by four individuals (I hesitate to call them "people"), who proceeded to torture him, live on Facebook Live.
They didn't even cover their faces.
The victim escaped and wandered the streets of Chicago, bloody and bruised. The four were arrested and are facing charges of, among other things, hate crimes. Bail has been denied.
It makes you wonder which was worse: the torture, the live feed (complete with comments from others) or the fact that these individuals were so proud of what they were doing that they didn't even bother to disguise themselves.
So I impulsively clicked - I really did want to take a stand. Who wouldn't? The "sponsored post" looked to belong to Special Olympics, a most worthwhile organization that promotes understanding of individuals with disabilities, giving them the opportunity to compete in various athletic events, but doing a lot more.
But now I'm wondering if I did right. There are fake sites, and one of them may now have my email address and zip code. It's something called Social Engineering - that something that reaches into your heart, and makes you click something Not Good.
We are cautioned time and again to "Think Before You Click". I did investigate further, and I am comfortable that what I clicked really did belong to the Special Olympics. But still....
What times we live in. The shame of it all.
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