I see it's been almost two years since I blogged last.
Since then, so much has changed. My mother in law's health continued to decline and she eventually lost her battle to stay with her Bil. She passed away in late 2018.
But before then, Bil had gone into what New York calls supportive housing. It is through an agency that provides other support services for him. He lives, not in what used to be called a group home (those facilities now are more like assisted living apartments, and the one we saw while looking for Bil's housing was occupied by frail, older disabled people) but an apartment he shares with another disabled man. Each of them have their own bedroom. They are required to cook for themselves, and clean. Bil still doesn't like to cook, and he refuses to clean, a story for another time.
He will never be independent. And I worry, about changing times which may cut the support that he now has.
There would have been so much to write about, if only I had the energy. I could wish I had an online diary for the last 18 months or so, but I don't.
Life is an unknown journey for all of us, be it Bil, or Bil's siblings, or me.
Now Bil is in his sixth decade. The world is changing, and because he loves to watch news programs, he knows it.
Will I continue his story?
Maybe.
I may even insert a little of my own story.
It will depend on how life goes.
Stay tuned.
Showing posts with label independence. Show all posts
Showing posts with label independence. Show all posts
Saturday, February 8, 2020
Friday, August 25, 2017
Taking Off In Flight
Some of us gain independence in our teens, others of us in our 20's.
For my autistic brother in law Bil, it may not be until his late 50's. For others with developmental disabilities, it may be never.
Bil may never have the ability to fly totally on his own wings, but we will applaud his attempts at independence, no matter how low or how high he may be able to fly.
This coming Monday, he will take another step.
When Bil moved up to this area with his elderly mother some two years ago, he was not at all independent. He had depended on his mother his whole life. But, a day program he started to attend changed all that.
He used to watch the same political shows as his mother. But then, he changed his orientation. He went from one political party to the one his mother did not support.
If you asked him to do something, he sometimes asked "why?" Not out of disrespect, but he was starting to think things through.
And, he lived on his own (with support) for several weeks while his mother was in rehab after a hospitalization. He chose that. The only night he wanted to stay with us was when there were thunderstorms, something he is highly frightened of.
Now, Bil has the chance to live apart from his mother for the first time. Monday, he will tour the apartment he and others are being considered for.
We are excited for Bil, even as people like Bil, people with autism, face budget cuts and worse.
We will not stop fighting for him, even as those who hate continue their demonstrations.
For my autistic brother in law Bil, it may not be until his late 50's. For others with developmental disabilities, it may be never.
Bil may never have the ability to fly totally on his own wings, but we will applaud his attempts at independence, no matter how low or how high he may be able to fly.
This coming Monday, he will take another step.
When Bil moved up to this area with his elderly mother some two years ago, he was not at all independent. He had depended on his mother his whole life. But, a day program he started to attend changed all that.
He used to watch the same political shows as his mother. But then, he changed his orientation. He went from one political party to the one his mother did not support.
If you asked him to do something, he sometimes asked "why?" Not out of disrespect, but he was starting to think things through.
And, he lived on his own (with support) for several weeks while his mother was in rehab after a hospitalization. He chose that. The only night he wanted to stay with us was when there were thunderstorms, something he is highly frightened of.
Now, Bil has the chance to live apart from his mother for the first time. Monday, he will tour the apartment he and others are being considered for.
We are excited for Bil, even as people like Bil, people with autism, face budget cuts and worse.
We will not stop fighting for him, even as those who hate continue their demonstrations.
Friday, July 7, 2017
Mom Have You Eaten? #FridayReflectons
For Bil, my autistic brother in law, his mother, and us, it has not been the best 10 days.
My mother in law, Bil's mother, fell and hit her side and then her head. Bil pulled the emergency cord in her apartment for her, but she wouldn't let the paramedics take her to the ER. She didn't want Bil left alone because thunderstorms were threatening.
We ended up taking her, and Bil was so bored because he could not control the TV in the waiting room. And, finally, he decided he wanted to be home after all.
A CT scan of mil's head was negative. A stroke of luck. It could have been so much worse.
When they asked my mother in law if she had hurt anything else, she said only "I am old. I hurt everywhere." It turns out, after a second trip to the ER after she couldn't stand the pain any more, that she had broken her tailbone. There was nothing to be done, only pain management.
But our mother in law has two other sons besides Bil, and both are very much in her life. Another stroke of luck.
The next day was the Fourth of July, and Bil wanted to be at our house, where we were entertaining several other family members. The plan was to have a BBQ and bring the leftovers (we made sure there were plenty of leftovers) to my mother in law's house.
When we took Bil home, Bil's first words to his mother were "have you eaten?"
Many people believe autistic people don't care about others in their lives. They are wrong. We are lucky in another aspect - Bil is verbal, and is a great help to his mother. How lucky.
But this is only a small part of the story. There's a lot more, but I will blog about it more next week.
Wish us luck.
Linking with Sanch Vee and #FridayReflections. Today's prompt: Lucky.
My mother in law, Bil's mother, fell and hit her side and then her head. Bil pulled the emergency cord in her apartment for her, but she wouldn't let the paramedics take her to the ER. She didn't want Bil left alone because thunderstorms were threatening.
We ended up taking her, and Bil was so bored because he could not control the TV in the waiting room. And, finally, he decided he wanted to be home after all.
A CT scan of mil's head was negative. A stroke of luck. It could have been so much worse.
When they asked my mother in law if she had hurt anything else, she said only "I am old. I hurt everywhere." It turns out, after a second trip to the ER after she couldn't stand the pain any more, that she had broken her tailbone. There was nothing to be done, only pain management.
But our mother in law has two other sons besides Bil, and both are very much in her life. Another stroke of luck.
The next day was the Fourth of July, and Bil wanted to be at our house, where we were entertaining several other family members. The plan was to have a BBQ and bring the leftovers (we made sure there were plenty of leftovers) to my mother in law's house.
When we took Bil home, Bil's first words to his mother were "have you eaten?"
Many people believe autistic people don't care about others in their lives. They are wrong. We are lucky in another aspect - Bil is verbal, and is a great help to his mother. How lucky.
But this is only a small part of the story. There's a lot more, but I will blog about it more next week.
Wish us luck.
Linking with Sanch Vee and #FridayReflections. Today's prompt: Lucky.
Saturday, April 29, 2017
Yearning (for good housing) #AtoZChallenge
"Bil", my autistic brother in law, 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. First, it was in his childhood home, where he lived for all his conscious life. In 2015, he and his mother were 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 there due to physical or health issues, Bil has to move out, and find another housing option. He would be allowed to stay, but he can't afford the rent. And therein lies the problem.
We already experienced a time when Bil had to stay in the apartment while his mother was hospitalized. He had a lot of support from my husband, his oldest brother, and me.
I've mentioned in other posts about the fact that Bil could never grasp the fact that garbage needed to be taken out. He had to be prompted. It was surprising that the smell of garbage didn't seem to prompt him into action.
We were a little bit more successful with food. Bil has always been scared to use the stove. But, we found he could use the microwave with direction. Lunch was not a problem two days a week, when he attended a day program. On other days, he would have a sandwich from a fast food place or the local supermarket (one of us had to take him). For supper, we ended up buying frozen dinners for him (alternating them with ready made dinners from the local supermarket). Bil learned to read the directions and put in the cooking times.
But being able to make microwave meals or being able to take out the garbage does not lead to independence.
Also, there is no public transportation where Bil lives. He is too young for the "senior bus". He is not capable of learning how to drive. And, even if he could get around on his own, it would not solve the problem of housing for Bil.
We will have to learn to think outside the box, because his options are truly limited.
"Y" Day on Blogging from A To Z.
Let me backtrack a little. Bil lives with his mother. He always has. First, it was in his childhood home, where he lived for all his conscious life. In 2015, he and his mother were 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 there due to physical or health issues, Bil has to move out, and find another housing option. He would be allowed to stay, but he can't afford the rent. And therein lies the problem.
We already experienced a time when Bil had to stay in the apartment while his mother was hospitalized. He had a lot of support from my husband, his oldest brother, and me.
I've mentioned in other posts about the fact that Bil could never grasp the fact that garbage needed to be taken out. He had to be prompted. It was surprising that the smell of garbage didn't seem to prompt him into action.
We were a little bit more successful with food. Bil has always been scared to use the stove. But, we found he could use the microwave with direction. Lunch was not a problem two days a week, when he attended a day program. On other days, he would have a sandwich from a fast food place or the local supermarket (one of us had to take him). For supper, we ended up buying frozen dinners for him (alternating them with ready made dinners from the local supermarket). Bil learned to read the directions and put in the cooking times.
But being able to make microwave meals or being able to take out the garbage does not lead to independence.
Also, there is no public transportation where Bil lives. He is too young for the "senior bus". He is not capable of learning how to drive. And, even if he could get around on his own, it would not solve the problem of housing for Bil.
We will have to learn to think outside the box, because his options are truly limited.
"Y" Day on Blogging from A To Z.
Friday, January 27, 2017
Housing for Bil Part 2
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.
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 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.
Sunday, January 27, 2013
The Miracle of Communication
We got tired of trying to interact with all the government agencies that are supposed to be helping Bil and my mother in law.
We hired a geriatric case manager. It wasn't cheap, but it was worth it. She assessed my mother in law yesterday, with Bil present. (I will write more about Bil's behavior during that assessment this weekend.)
My mother in law made excuses. I can't do this because....I don't want to try, because....but this person had a comeback for every one (some funny, some compassionate) and she did this in such a way that my mother in law immediately bonded with her.
It's all in knowing how to communicate. This woman could communicate with my mother in law in a way that none of us know how. We need to learn this skill.
The arguments she uses with us didn't work with this skilled woman, who has been doing this type of work for years.
The assessment is: my mother nedsto move. She needs to regain whatever strength she can. She needs to socialize more. There will be ways to do both at the same time.
I think we are going to FINALLY start to make some progress, all because of a skilled communicator.
And, as a plus, she is going to help with Bil's situation. Not just my mother in law's. She is going to make some phone calls.
I hope they get returned.
We hired a geriatric case manager. It wasn't cheap, but it was worth it. She assessed my mother in law yesterday, with Bil present. (I will write more about Bil's behavior during that assessment this weekend.)
My mother in law made excuses. I can't do this because....I don't want to try, because....but this person had a comeback for every one (some funny, some compassionate) and she did this in such a way that my mother in law immediately bonded with her.
It's all in knowing how to communicate. This woman could communicate with my mother in law in a way that none of us know how. We need to learn this skill.
The arguments she uses with us didn't work with this skilled woman, who has been doing this type of work for years.
The assessment is: my mother nedsto move. She needs to regain whatever strength she can. She needs to socialize more. There will be ways to do both at the same time.
I think we are going to FINALLY start to make some progress, all because of a skilled communicator.
And, as a plus, she is going to help with Bil's situation. Not just my mother in law's. She is going to make some phone calls.
I hope they get returned.
Monday, October 1, 2012
Concerns Raised over Independent Living Centers
A disturbing news article: Concerns raised over Independent Living Centers.
Quoting from the article:
"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."
Continuing, from the article:
" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."
If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY. On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.
But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?
Another disappointment.
Quoting from the article:
"The Centers for Independent Living provide information and referral services, training to help those with special needs live independently, peer counseling and advocacy services. As of 2010, there were 337 federally-funded centers across the country, all of which are run predominantly by people with disabilities themselves."
Continuing, from the article:
" a new audit finds, calling into question how effective the centers are at helping people with disabilities integrate into the community."
If/when my husband and I become responsible for Bil's housing, it is quite possible we would have turned to our local independent living center here in upstate NY. On paper, these centers would have seemed to be the place to go for help - they are run by people with disabilities for people with disabilities.
But....is there any REAL help out there for siblings like my husband, trying to do right for his brother with autism?
Another disappointment.
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.
Saturday, January 14, 2012
Another Sib-There But For the Grace....
The other day, we met an individual who has not one, but three, siblings with disabilities of one type or another.
We are very lucky with Bil in many ways. Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him. Also, he is in relatively good health.
As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.
We talked about one sibling in particular. The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today. It's a tragic situation. The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.
When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.
Just like Bil.
The sib did make the adjustment though. Just like Bil will have to when his time comes. He will have no other choice. And I don't know how well we can prepare him in advance.
It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.
We are very lucky with Bil in many ways. Right now at least there are no behavioral issues, which I fear will change once his mother, who has been the one constant in his life, is either deceased or no longer able to care for him. Also, he is in relatively good health.
As for this other individual, the other siblings were placed in supported housings (I use this as a very general description) years ago.
We talked about one sibling in particular. The sibling does not have autism, but rather a profound disability caused by a medical condition that is easily diagnosed and treated today. It's a tragic situation. The sibling is profoundly - shall we say, intellectually challenged - and lived in an institutional setting for many years.
When the sib was taken out of it, it was a very long adjustment period because of the high need for routine and structure.
Just like Bil.
The sib did make the adjustment though. Just like Bil will have to when his time comes. He will have no other choice. And I don't know how well we can prepare him in advance.
It's small comfort, I guess, to realize there are others in our shoes - people you would never suspect until you mention Bil to them.
Friday, December 23, 2011
The Importance of Completing Growth
I recently found a book in the library called "Making Sense of Autistic Spectrum Disorders-Create the Brightest Future for Your Child" by Dr. James Coplan.
The name immediately rang a bell. I had the pleasure of meeting Dr. Coplan years ago. He used to practice in the Syracuse area and later moved to Children's Hospital of Philadelphia. Simply put, he is a developmental pediatrician who has a number of sub-specialties, and is uniquely qualified to work with children with ASD's - and their families. When I met Dr. Coplan years ago, what impressed me the most was his compassion.
Sometimes, doctors with great knowledge can be cold, and that is the last thing a family who has a member with autism needs.
Now, years later, I found out more about the background of Dr. Coplan. He has a younger sister with a developmental disability - in other words, he is a "sib" besides being a doctor.
He is a very accomplished blogger. I met the Doctor before blogging existed so I don't know why that surprised me - but I had never attempted to find his work through the Internet.
But I really don't want to write about Dr. Coplan. I want to write about his book.
While this 400 plus page book gave an extensive overview of many issues with children (and I highly recommend it to those with younger children). Like so many of these books, they "fade out" when it comes to adulthood. Usually that is disappointing. But, since Dr. Coplan is a pediatrician, it is understandable.
But what Dr. Coplan said about adults with autism....well, it is so much what I feel, also.
Dr. Coplan explains that a child's "job" is to grow up and become independent. The drive to independence begins the day after birth.
If an adult with a disability is kept at home, he or she never can complete their growth.
Dr. Coplan realizes such an individual might never be independent. But there is a difference between living in a supported environment away from the parents (he did mention group homes, which many in the disability communities would rather go away, as an example) and staying at home. And he was very emphatic about this: the individual with the disability has to leave the home to complete the growing up process.
The parent who prevents the child from leaving is doing him or her a grave disservice, especially if there has to be a sudden change in living situation (such as the parent dying suddenly.) He even gave an example of such an instance (a parent dying suddenly.)
This is what I have been saying all along!!!!
The name immediately rang a bell. I had the pleasure of meeting Dr. Coplan years ago. He used to practice in the Syracuse area and later moved to Children's Hospital of Philadelphia. Simply put, he is a developmental pediatrician who has a number of sub-specialties, and is uniquely qualified to work with children with ASD's - and their families. When I met Dr. Coplan years ago, what impressed me the most was his compassion.
Sometimes, doctors with great knowledge can be cold, and that is the last thing a family who has a member with autism needs.
Now, years later, I found out more about the background of Dr. Coplan. He has a younger sister with a developmental disability - in other words, he is a "sib" besides being a doctor.
He is a very accomplished blogger. I met the Doctor before blogging existed so I don't know why that surprised me - but I had never attempted to find his work through the Internet.
But I really don't want to write about Dr. Coplan. I want to write about his book.
While this 400 plus page book gave an extensive overview of many issues with children (and I highly recommend it to those with younger children). Like so many of these books, they "fade out" when it comes to adulthood. Usually that is disappointing. But, since Dr. Coplan is a pediatrician, it is understandable.
But what Dr. Coplan said about adults with autism....well, it is so much what I feel, also.
Dr. Coplan explains that a child's "job" is to grow up and become independent. The drive to independence begins the day after birth.
If an adult with a disability is kept at home, he or she never can complete their growth.
Dr. Coplan realizes such an individual might never be independent. But there is a difference between living in a supported environment away from the parents (he did mention group homes, which many in the disability communities would rather go away, as an example) and staying at home. And he was very emphatic about this: the individual with the disability has to leave the home to complete the growing up process.
The parent who prevents the child from leaving is doing him or her a grave disservice, especially if there has to be a sudden change in living situation (such as the parent dying suddenly.) He even gave an example of such an instance (a parent dying suddenly.)
This is what I have been saying all along!!!!
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