tag:blogger.com,1999:blog-58341198966795318342024-03-06T02:04:08.756-05:00The Unknown Journey AheadAn autistic brother in law entering his senior years. His elderly mother. Our family. This blog chronicles the struggles and joys - and, yes, rants, of life.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.comBlogger465125tag:blogger.com,1999:blog-5834119896679531834.post-52060859139534988352020-02-08T18:10:00.005-05:002020-02-08T18:10:44.809-05:00The Unknown Journeys AheadI see it's been almost two years since I blogged last.<br />
<br />
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.<br />
<br />
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.<br />
<br />
He will never be independent. And I worry, about changing times which may cut the support that he now has.<br />
<br />
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.<br />
<br />
Life is an unknown journey for all of us, be it Bil, or Bil's siblings, or me.<br />
<br />
Now Bil is in his sixth decade. The world is changing, and because he loves to watch news programs, he knows it.<br />
<br />
Will I continue his story?<br />
<br />
Maybe.<br />
<br />
I may even insert a little of my own story.<br />
<br />
It will depend on how life goes.<br />
<br />
Stay tuned.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com0tag:blogger.com,1999:blog-5834119896679531834.post-25011628075510000012018-06-15T18:37:00.001-04:002018-06-15T18:37:02.971-04:00The Butt DialTonight, my phone rang. It was in my purse, and by the time I fished it out, the phone had stopped ringing. <br />
<br />
It was my mother in law's former next door neighbor, and best friend. She had butt-dialed us (she was playing with some of her grandchildren). But, while my husband was on the phone with her, we talked a little. She wanted to know how her friend was doing. She wanted to know how my autistic brother in law, Bil, was doing.<br />
<br />
She will call my mother in law, who is 90 and has early dementia, and the next day my mother in law won't remember anything. But at least my neighbor still calls.<br />
<br />
Enough people who once cared about her have seemed to have disappeared. Or maybe they call her, and she doesn't remember when my husband asks. She claims "no one called her".<br />
<br />
We have been going through photos in her apartment. And there are so many people in those photos we don't know.<br />
<br />
Others, we take an educated guess.<br />
<br />
Are these people alive? Do they care? Or, knowing she is losing her memory, do they decide it is to painful to watch her decline?<br />
<br />
I can identify. It's painful for us, and the friend who butt dialed. And maybe for Bil,but he interacts so little with her that we don't know. Like some with autism, he doesn't share his inner thoughts with us.<br />
<br />
But I'm glad she butt-dialed. So glad.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-46514099529427870422018-06-11T18:05:00.001-04:002018-06-11T18:05:26.875-04:00What Makes Us "Us"? #MondayMusingsOn Saturday, my autistic brother in law, "Bil" visited his elderly mother, who is now in a long term care facility. My husband and I brought "Bil" there.<br />
<br />
The visit started as it normally does. Bil comes into the room, looks at his Mom just long enough to establish she is there, and takes off to another part of the semi-private room. Normally, her roommate spends the entire day outside her room, so there is some privacy, and Bil heads for the recliner next to the roommate's bed.<br />
<br />
This time, though, my mother in law wanted to talk.<br />
<br />
"Come here, Bil" she instructed several times. He did, almost reluctantly, as we tried to get some idea of what he had done recently. More than anything, his mother just wanted to know that he is well, and happy.<br />
<br />
But it's like pulling teeth (and, as a literal thinker, if I said that to Bil, he would run away, terrified that someone wanted to pull his teeth out) sometimes, to find out things from Bil. He's not much of a talker. Even when he talks about things he likes, he isn't a man of many words.<br />
<br />
My mother in law loves her flowers. We brought her some. She asked, several times in succession, what they were. Patiently, I told her several times what they were.<br />
<br />
Then she asked Bil about the Belmont Stakes race that was taking place later that afternoon. What channel was it on? And several minutes later ,what channel was it on? And Bil answered her each time.<br />
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It's impossible to know what Bil is thinking of, as he watches his Mom sink into dementia. She is in the early stages, and seemed to be pretty alert today. But so much of us is our memories - I can see it on days when she isn't quite there, and I know it will only get worse.<br />
<br />
What will happen when she doesn't remember who any of us are? What are we without our memories?<br />
<br />
What happens to us when our memories are lost? When we are surrounded by strangers who are really our loved ones?<br />
<br />
What makes "us" us? And, since "Bil" is younger than my husband and his other brother, will he go through this again and again, as his two male sibs age<br />
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<a href="https://everydaygyaan.com/hotline-to-god/" target="_blank">Join Corinne and other bloggers for #MondayMusings. </a><br />
<br />bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2tag:blogger.com,1999:blog-5834119896679531834.post-29475499208059164992018-05-25T06:21:00.001-04:002018-05-25T06:21:27.226-04:00The Sheltered Life #FridayReflectionsMy autistic brother in law, Bil, spent much of the years of his adult life, sheltered, in either a sheltered workshop (where he made less than the minimum wage) or, in his bedroom.<br />
<br />
<br />
That has changed in the past two and a half years, after his two brothers moved him (and his elderly mother, now ailing) up to be near us.<br />
<br />
We had better programs here - no reflection at all on his mother, who did what she could raising him in an age where there were few services for people with autism.<br />
<br />
Sheltered workshops no longer exist - and as a result, my brother in law no longer works. One adjustment. <br />
<br />
Sometimes, I am in awe of my brother in law. He has had to make so many adjustments in so little time.<br />
<br />
There is another one coming, as his mother will be transitioning from rehab into skilled nursing in the near future. She needs 24 hour care for an ailment and won't be able to return home after three hospitalizations in a month's time. And now, we have a month to clean out her apartment, including the room that was once his shelter. Three moves in less than three years.<br />
<br />
"Bil", earlier this year, moved into what is called supportive housing, and now is experiencing life on his own (with a roommate, and support, but still on his own). How daring can that be, in your late 50's?<br />
<br />
He has the chance for independence, finally, and I hope he has the daring to take full advantage of it. So far he is taking baby steps - and what else would one expect, when the door to independence of a sheltered life opens?<br />
<br />
But, sooner or later, there will be still another leaving from his sheltered life, when the mother who cared for him for almost 60 years takes her ultimate journey.<br />
<br />
What will happen then?<br />
<br />
<br />
Today, on #FridayReflections,I am writing from the prompt "A sheltered life can be a daring life as well. For all serious daring starts from within. - Eudora Welty" <a href="https://kohleyedme.com/2018/05/25/choose-yourself-today/" target="_blank">Join Shalini </a>and <a href="https://everydaygyaan.com/a-world-without-books/" target="_blank">Corinne at Everyday Gyaan</a>, and contribute your own #FridayReflections.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com4tag:blogger.com,1999:blog-5834119896679531834.post-10683237399463615262018-05-18T18:54:00.002-04:002018-05-18T18:58:12.455-04:00A World Without Books #FridayReflections“I have always imagined that paradise will be some kind of library.” — Jorge Luis Borges<br />
<br />
I have loved books since I was a little girl. I loved how they felt. I loved how they smelled. I loved going to the small branch public library that was located in the housing project where I grew up and taking books out.<br />
<br />
Soon after I started school, that branch library closed, and in its place we started to get a bookmobile. It would park at my housing project each Thursday, except during the summer. I dreamed of working in a bookmobile (a mobile library) when I grew up.<br />
<br />
There was another branch library in walking distance, about a mile away. They would close each June (and reopen in September) but they would allow users to take out an unlimited number of books right before they closed. I filled my room with summer reading material.<br />
<br />
So, when my husband and I became responsible for my autistic brother in law, one of the very first things we did for him was getting him a library card. Strangely, he won't take the books out. He wants to read in the library only. He does have his favorites - science and horror.<br />
<br />
In his own way, he loves books, too. And the library.<br />
<br />
In books, we both find our own types of paradise.<br />
<br />
If heaven does not have libraries, it will not be heaven.<br />
<br />
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And, on this day when students and a teacher in a high school art classroom lost their lives in Santa Fe, Texas, all I can do is share a picture of a quilt displayed at our local library during the summer of 2014. May they rest in peace.<br />
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Join <a href="https://everydaygyaan.com/a-world-without-books/" target="_blank">Corinne at Everyday Gyaan</a>, <a href="https://kohleyedme.com/2018/05/18/diy-yarn-wall-hanging/" target="_blank">Shalini/Kohl Eyed Me </a>at #FridayReflections and share your love of books!bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com6tag:blogger.com,1999:blog-5834119896679531834.post-52965771392104631262018-05-11T00:32:00.000-04:002018-05-11T00:32:06.816-04:00The Last SpringI fear this will be my mother in law's last spring.<br />
<br />
Next week, we will have to tell my brother in law, who is autistic, that his mother will not be coming home from her recent hospitalizations and stints in rehab. Instead, she is going to be admitted into skilled nursing.<br />
<br />
Three Emergency Department visits in five weeks. A good reason why I have not been posting.<br />
<br />
Today, she couldn't even remember that she had rehab. All she could remember is that she was exhausted because "they kept taking me out of bed".<br />
<br />
I don't know how my brother in law will react, but I have a feeling he's already figured it out in his mind. Us telling him will only make it official.<br />
<br />
We've been told we have to be direct with him - not to use any euphemisms, as they would only confuse him.<br />
<br />
Hoping I will have enough energy to report how the "big reveal" went.<br />
<br />
Watching my mother in law fade away from congestive heart failure and early onset dementia has been an emotional experience. I never dreamed how hard it would be. My parents, and my one grandparent who lived into my adult years, all died suddenly.<br />
<br />
I've had friends die but nothing could have prepared me for this.<br />
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I just hope my brother in law will cope with it OK, because I just don't know how to support him, and I barely have enough strength to support myself.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-15157353224022785562018-04-20T00:27:00.000-04:002018-04-20T00:27:16.733-04:00The Pay Cut"Bil" gets a service called Community Hab. A community hab provider takes Bil out into the community to provide him opportunities for socialization. They work on agreed on skills, such as money management.<br />
<br />
A particular woman, let's call her "A", has worked with Bil for around two years now. <br />
<br />
This woman has opened up Bil's world. She hobbled around on a bad foot for months taking Bil places. She's been dependable, and a support to Bil at certain stressful times in the past few months.<br />
<br />
It's not an easy job. I work with someone who works part time as a community hab provider. She's had situations where her client has been tormented, for example, at the local mall, by young people calling her client names. I don't know if this has happened to "A" or "Bil", but these providers are trained in how to react to such circumstances. Or, if their client has a medical emergency while working with them. <br />
<br />
Recently, "A" was rewarded for her hard work.<br />
<br />
"A" received a $1.50 an hour pay cut for a job well done.<br />
<br />
Yes, you read right. A pay cut was her reward.<br />
Why?<br />
<br />
Well, the agency that employs her has lost funding. They have to cut costs. These people are not paid well as it is.<br />
<br />
Yes, this is how we reward those who work with our most vulnerable populations.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2tag:blogger.com,1999:blog-5834119896679531834.post-21689732250846068242018-04-14T18:28:00.003-04:002018-04-14T18:28:35.893-04:00Sickness StrikesMy mother in law spent part of this week in the hospital, recovering from pneumonia. And "Bil" ended up with bronchitis, which came close, really close, to developing into pneumonia, too. Yesterday, she was moved to rehab in a facility that includes assisted living and skilled nursing.<br />
<br />
The admitting doctor described her as "frail".<br />
<br />
Today, we visited her with "Bil". "Bil" spent about 30 seconds interacting with her, after which his entire attention was trained on the room TV. It was enough for him to see her. Interaction wasn't necessary.<br />
<br />
Family members are starting to wonder about her dementia. The pneumonia hospitalization was a good time to tell them (since a couple of them were thinking about traveling here to see her, a journey of over 100 miles). One asked me, point blank, if she had dementia. Another said "I had suspected".<br />
<br />
Yesterday, when my husband asked her what clothes she wanted him to bring to the facility, she just looked at him blankly. <br />
<br />
This morning, my mother in law didn't remember what she had for dinner last night (we wanted to know because she had trouble cutting her food for lunch - fish). She didn't know if anyone had called her (there are a lot of people who care about her, and I had informed various family and friends of where she was and her phone number).<br />
<br />
"Bil" wanted to know how long his Mom would be in the facility. Everything, in his world, needs to have an exact time frame. But there is no time frame. He did announce to his Mom how long he thought she would be there.<br />
<br />
And then, he asked us to take us to the apartment he once shared with his Mom, to get more clothes to wear.<br />
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It's good that he considers the supportive apartment he lives in now as "home", because we don't know if his mother will ever be returning to her home or not.<br />
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Sometimes, I wonder if her mental decline is, in some ways, a good thing for her.<br />
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And then I feel terrible for feeling that way.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-64999936693112063622018-03-30T11:35:00.004-04:002018-03-30T11:35:35.270-04:00Caregiving Bumps in the RoadIt's ironic - now that I have so much to write about, I'm not writing about it anymore.<br />
<br />
My autistic brother in law has receded into the background while we try to deal with issues surrounding my elderly mother in law, who is in the early stages of dementia.<br />
<br />
Several evenings a week, we ('we' meaning family members in our area) have arranged for an agency to provide a home health aide to make supper for my mother in law, make sure she takes her meds (she can't manage them on her own anymore) and make sure she goes to bed with her oxygen on (on her own, she claims she doesn't need oxyge. She does).<br />
<br />
If a family member visits, she tends not to remember the next day. <br />
<br />
Well....<br />
<br />
We found out one aide wasn't doing her job, after a friend came over to visit and found some interesting things. That aide lasted three weeks. The current aide is good, but had car trouble - came one night via taxi (which probably ate up most of her pay for the night) and the next night, wasn't able to come - and the agency couldn't find a replacement.<br />
<br />
So we and the friend all pitched in. My spouse made dinner. He had already visited his Mom earlier, after doing shopping. He also did some of her financial affairs.<br />
<br />
It never ends...until one day when it will end.<br />
<br />
Meanwhile, "Bil" isn't feeling well, and, although he is supposed to come to his Mom's today for a weekend visit, we aren't sure what will happen. When he left to go to his apartment this past Monday, she couldn't remember, a half hour later, when he was going to return. She has become unmoored from time.<br />
<br />
And, earlier this week, she couldn't remember her son's phone number, a number he has had for 31 years.<br />
<br />
Ah, the joys of caregiving.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2tag:blogger.com,1999:blog-5834119896679531834.post-1549434268291535592018-03-24T18:28:00.000-04:002018-03-24T18:28:00.775-04:00Coming Up for Air #NoAtoZChallengeIt has been such a roller coaster ride, these last two months.<br />
<br />
My mother in law has developed signs of dementia. She goes to the doctor one day and forgets the next. We found out the hard way, when she had not taken her medications in a couple of days.<br />
<br />
It was a game changer, especially when a housing opportunity finally opened for Bil. We had to get (with family help) a lot of things together in a brief amount of time, but we all did it.<br />
<br />
"Bil", my autistic brother in law, is now living in a supportive apartment about a five minute drive from where my husband and I live. He lives there four days a week and spends the other three days with his mother. <br />
<br />
Her needs have exceeded what we can all provide and she now has a part time home health care aide. She will run out of money in less than a year, though, and we don't know what we will do then.<br />
<br />
It's all so exciting, I haven't had time to blog, and I will not be participating this year in the Blogging from A to Z challenge.<br />
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If you are one of my readers, and you do intend to A2Z, let me know, and I will be visiting your blog from time to time.<br />
<br />
That's a promise. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com4tag:blogger.com,1999:blog-5834119896679531834.post-11531467651245244072018-01-12T07:00:00.000-05:002018-01-12T07:00:23.770-05:00Taking A BreakI've decided to put this blog on hold for a hiatus while I think about the direction I want to take it in.<br />
<br />
I had thought about blogging a book based on my experiences with my autistic brother in law, "Bil", but I never got very far with it.<br />
<br />
I am facing my mother in law's declining health, and other issues.<br />
<br />
She was hospitalized earlier in December with a lung issue and put on oxygen. We had additional difficulties with her this week.<br />
<br />
I have to admit that watching her decline has stirred emotions in me - strong emotions - that I could barely believe I was experiencing. I had a couple of day that were emotionally rocky for me.<br />
<br />
I have a handful of of steady readers, and I am so grateful to them for sticking with me. Thank you thank you thank you. <br />
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If you have read my blog, thank you so much. I will be back. I just don't know when. <br />
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Farewell for now.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-59969838168184045762018-01-05T06:04:00.003-05:002018-01-05T06:04:45.567-05:00Our Own IndependenceWelcome to the wonderful world of having a disabled sibling or in law. It's a journey that you either get or you don't get.<br />
<br />
Next week, we are going to be attending an annual planning meeting where the Individual Service Plan for my autistic brother in law, "Bil", will be developed.<br />
<br />
And, I have to face some uncomfortable truths.<br />
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The world for people with autism has changed dramatically since he was born almost 60 years ago. And, Bil is finding it difficult to keep up.<br />
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He's gone from a world where people with disabilities were expected not to speak with their voice, and, instead, go along passively with decisions made by others.<br />
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He's gone from a world where people "like him" sometimes ended up in institutions with little hope and worse living conditions, to a world where people want him to be independent.<br />
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That word - independence. People working with him are saying, that for Bil's long term good, he needs to live in an apartment where he would be expected to do most everything for himself. He would need to provide his own transportation (his feet) or learn to use mass transit.<br />
<br />
Other people with disabilities do that, but Bil has been waited on hand and foot by his mother for almost all of his life. And he still expects things to be done for him by her, or by us (his siblings and in laws). He's never expressed a desire to learn mass transit, for example, and under the "People First" philosophy they can't give him that training unless he asks for it.<br />
<br />
No, instead, he waits around until he knows someone is going to visit, and then he wants someone to take him somewhere.<br />
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Bil does need help. But, at the same time, we deserve our own lives and our own freedom, when it comes to things Bil is capable of.<br />
<br />
Bill is capable of walking - he has no physical disabilities.<br />
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He's capable of learning a lot, given the right training. We've already seen glimmers of this in a day program he goes to twice a week (although, early this year, he will have to be removed from it, because of his "improvement".<br />
<br />
But he has to ask to be trained for the skills of independence. We could say the system is stacked against him, and we can feel sorry for ourselves and yield to it.<br />
<br />
We had a family meeting last weekend, and we aren't yielding. To either the system or to Bil.<br />
<br />
We may have to find our way differently. <br />
<br />bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-54041222415411619552017-12-29T01:20:00.000-05:002017-12-29T01:20:10.688-05:00Looking Back on 2017 #FridayReflections2017 has come and gone in the blink of an eye. That is what happens when you age - the years spin by faster and faster, like an unraveling roll of toilet paper.<br />
<br />
Right now, I feel about as strong as toilet paper.<br />
<br />
On this, the last Friday of 2017, I look back on a year that, for my autistic brother in law, has been one step forward and one step back. And we look ahead to 2018 with some trepidation. <br />
<br />
Kind of a cha-cha-cha dance for people with disabilities, including my brother in law, "Bil".<br />
<br />
On the bright side:<br />
Bil has made progress in his day program.<br />
Bil is (apparently) at the top of the housing list, although that is because of the declining health of his mother.<br />
<br />
On the not so bright side:<br />
He is being pressured to take a housing placement that may not be suitable for him - a somewhat independent situation, for someone who is almost 60 and has never lived on his own for a day of his life. For much of that life, his mother waited on him "hand and foot" as we say. Funny I should use idiomatic speech as it is something Bil has a lot of trouble understanding.<br />
<br />
We are being pressured to accept something called "self determination", which could have some benefits, but would a lot more of our time and effort - I work full time, and all of Bil's siblings have health or physical problems. And two of them are senior citizens, older than Bil. I am a senior citizen too. <br />
<br />
And, as I mentioned, his mother's health fails, something not unexpected in this, her 90th year.<br />
<br />
In a way, I dread what is coming next.<br />
<br />
I wonder how Bil feels? <br />
<br />
A look back at 2017, for the <a href="https://www.sanchwrites.com/2017/12/goodbye-2017/" target="_blank">last #Friday Reflections.</a><br />
<br />
Yes, I dread the new year. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com4tag:blogger.com,1999:blog-5834119896679531834.post-65994662555963189262017-12-22T06:16:00.001-05:002017-12-22T06:16:52.327-05:00Dear Santa #FridayReflectionsDear Santa:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZpH_CPwxp741g5PJ9om3loenwoizcnIg9vI3GTYcng6cnloFcxf2wRQFGsDM15GA8qgQNkyMJi4Zu0QCUH3-kUCd76l5DFe0dP1Io_SlzyHfWBE7dh2h-1xBKbDABO3XlGB55rul7Hue5/s1600/Santa+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZpH_CPwxp741g5PJ9om3loenwoizcnIg9vI3GTYcng6cnloFcxf2wRQFGsDM15GA8qgQNkyMJi4Zu0QCUH3-kUCd76l5DFe0dP1Io_SlzyHfWBE7dh2h-1xBKbDABO3XlGB55rul7Hue5/s320/Santa+3.jpg" width="240" /></a></div>
<br />
Oh, if only you were real. I would have so much to ask you for.<br />
<br />
I would ask that we humans treat each other fairly and with dignity.<br />
<br />
I would ask that our health system be fixed. Last week, I saw firsthand how dysfunctional it can be.<br />
<br />
I would ask for housing suitable for my autistic brother in law. I would ask for a system helping those with disabilities that was easy to manuver and really did do right by the people who depend on that system.<br />
<br />
And, Santa, while you are at it, how about peace and plenty for us all?<br />
<br />
I don't ask for too much, do I?<br />
<br />
If only I had the time and energy to write about the events of the last week, Santa. But for now, I am setting it aside, and getting a good night's sleep. <br />
<br />
Join Sanch Vee and others for <a href="https://www.sanchwrites.com/2017/12/dear-santa-2017-edition/" target="_blank">#FridayReflections, and see what we are asking Santa for.</a>bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com3tag:blogger.com,1999:blog-5834119896679531834.post-12901223910375064372017-12-15T18:38:00.000-05:002017-12-15T18:38:01.159-05:00Expecting the Unexpected Once AgainMy mother in law was taken to the ER yesterday, and hospitalized.<br />
<br />
So the day that my brother in law, "Bil", may face living without his mother gets closer and closer.<br />
<br />
For right now, the doctors have several mysteries to solve, and we are awaiting the results of tests, so I will keep this brief, and blog more later. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-39420920518562924852017-12-08T02:00:00.000-05:002017-12-08T02:00:27.164-05:00The Perils of ImprovingWe have a problem. Well, we have more than one problem, but...<br />
<br />
My autistic brother in law, Bil, will be dropped from his day program. He no longer fits the criteria - he has improved too much. He has to go.<br />
<br />
This week, my husband (Bil's guardian) and Bil toured a possible new day program.<br />
<br />
It's active. They get the participants out to the YMCA for exercise. They go bowling. They play basketball. They attend exercise classes. They are out and about.<br />
<br />
They asked Bil what he likes to do. His response was "go shopping".<br />
<br />
Hmmm....I have a feeling this is not a good fit.<br />
<br />
So we don't know where to go. <br />
<br />
My brother in law, who is close to 60, has never been in any athletic activity. For years, he worked in a sheltered workshop. He came home and watched TV. He went shopping with his mother. But when his mother bowled with her friends or mall walked (those days are over), he didn't come with her. She needed her time with friends. I totally get that.<br />
<br />
The day program he is with now broadened his horizons, but it was designed for those with medical issues, and now he will be in with active adults who love to be active.<br />
<br />
I feel for Bil. <br />
<br />
He told the placement "he would think about it". He doesn't have too long to think about it, though.<br />
<br />
I hope he will try it. We can't force it, although we can encourage it. It is his life, his decision.<br />
<br />
If he says no, then what? Does he go back to sitting at home while his Mom (now almost 90 with multiple health issues) watches the Hallmark Channel, news channels, and cooking shows?<br />
<br />
The future awaits. And people with autism do not like change.<br />
<br />
But change is coming.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-34741927151420152142017-12-01T01:18:00.000-05:002017-12-01T06:20:55.247-05:00Eccentric #FridayReflectionsEccentric - "of a person" "unconventional and slightly strange".<br />
<br />
Today, instead of blogging about my disabled brother in law, Bil, I want to talk about me. <br />
<br />
My father was a bit eccentric. In modern times, he may well have been diagnosed with OCD. One of my cousins on my father's side (now deceased) suffered terribly with OCD, and I am told one of my great aunts also exhibited OCD type behavior.<br />
<br />
In my Dad's day, though, the behavior was "quirky". To the teenaged me, growing up with my Dad - just us two, after the untimely death of my mother, it was more of an embarrassment.<br />
<br />
As one example, my Dad liked to put dates on things.<br />
<br />
For example would buy a box of crackers - he used to love to snack on saltines. Every time he removed saltines from the box, he would write a record of it - the number and the date - on the side of the box.<br />
<br />
He would buy socks. They were always the same style and color. He would date each sock. And if I, doing the laundry, put two socks of different dates together, it would make him uncomfortable. Don't get me wrong, he never yelled at me or verbally abused me - never. But you could tell he wasn't happy.<br />
<br />
I have my own little quirks. When my child was young, he had several sets of Legos. It wasn't enough for him to put the Legos away. They had to go into the exact box they came in (so, after getting him to put the toys away, I would redo them, sorting out the Legos into their correct boxes. If they were in the wrong box, it made me uncomfortable). I did live my life just fine but there would be that nagging discomfort if I didn't put the Legos in their correct, original box.<br />
<br />
<br />
Quirk? Eccentric behavior? Or something more?<br />
<br />
What about you? <br />
<br />
<a href="https://www.sanchwrites.com/2017/12/complicit/" target="_blank">Join Sanch Vee and others for #FridayReflections.</a> Today's prompt: "Eccentric".bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com3tag:blogger.com,1999:blog-5834119896679531834.post-52954172104355457212017-11-24T01:15:00.000-05:002017-11-24T01:15:00.232-05:00If We Were Having Coffee #FridayReflectionsDear friend, here we are, sitting at the able over our coffees.<br />
<br />
I have so much to tell you, but I'm not sure how to begin.<br />
<br />
We had a wonderful Thanksgiving with my nearly 90 year old mother in law, and my autistic brother in law, Bil. Bil, I think, had a good time, too.<br />
<br />
But change is coming in his life. His day program can no longer keep him.<br />
<br />
Next week, Bil will tour a new program. And, the week after, he is going to consult with a gastroenterologist. He should have had a colonoscopy years ago, and his doctor says he needs to have one now.<br />
<br />
That's going to be fun and exciting. The prep for a colonoscopy isn't fun for a person who is not developmentally disabled. Not a topic for a coffee shop, so I'll have that conversation another time.<br />
<br />
His doctor feels Bil should exercise more, as his weight keeps increasing. He loves to eat, and we'll have to see where that goes, too.<br />
<br />
And, dear friend, we almost didn't have that Thanksgiving at all, because my mother in law fell yesterday, leaving her apartment. Fortunately, it was more of a sliding down her rollator than a true fall, but she couldn't get up and had to call my husband for help. <br />
<br />
So it leaves us again, with worries and unanswered questions, as winter starts to close in on us.<br />
<br />
There's something about having coffee that relaxes you and lets conversation flow. I've spoken enough - what's up with you?<br />
<br />
Join Sanch Vee and others for <a href="https://www.sanchwrites.com/2017/11/over-a-cup-of-coffee/" target="_blank">#FridayReflections. </a><br />
<br />
The prompt: "If you were having coffee". bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com4tag:blogger.com,1999:blog-5834119896679531834.post-73390795223951937752017-11-17T18:42:00.002-05:002017-11-17T18:45:11.418-05:00Authenticity Authenticity is the daily practice of letting go of who we think we are supposed to be, and embracing who we are. - Casandra Brené Brown<br />
<br />
<a href="https://www.ted.com/talks/brene_brown_on_vulnerability?utm_campaign=tedspread--b&utm_medium=referral&utm_source=tedcomshare" target="_blank">In 2010 Ms. Brown gave a talk at TEDx Houston. Her profile says:</a><br />
<br />
"Brené Brown studies human connection -- our ability to empathize,
belong, love. In a poignant, funny talk, she shares a deep insight from
her research, one that sent her on a personal quest to know herself as
well as to understand humanity. A talk to share."<br />
<br />
If there is one person in the world who is authentic, it is my brother in law Bil, who is developmentally disabled. I'm not sure he has ever even thought about who he is supposed to be. He just is who he is. In some ways, knowing him is a way of understanding humanity. He doesn't try to be fake. He doesn't hide who he is.<br />
<br />
Some may call it "being naive". But, with Bil, what you see is what you get.<br />
<br />
This isn't to say that Bil never engages in manipulative behavior. He isn't a saint. And, really, we do people with disabilities a disservice when we portray them as long-suffering people that are just a step away from sainthood. And, I would not be authentic myself if I didn't admit that I don't always like him. He isn't an easy person to know.<br />
<br />
But Bil doesn't pretend to be something he is not. <br />
<br />
So, it hurt Bil when he got some bad news this week. He is no longer eligible for his day program. And why is that?<br />
<br />
Because he has made strides in it, enough that he is no longer impaired enough for them to justify him attending it. But it hurt the program director when she had to tell us. If things change, she told us, we would take him back in a heartbeat. We love Bil." And Bil liked the program.<br />
<br />
So now, the hunt is on for a different program.<br />
<br />
Bil will be Bil, and maybe he will end up thriving in his new program. So again, Bil, who dreads change, will have to face another change in his life. The Unfamiliar. But a change that, we hope, ends up being for the better.<br />
<br />
Join Sanch Vee and other bloggers at <a href="https://www.sanchwrites.com/" target="_blank">#FridayReflections. </a>The prompt is at the top of my post. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com0tag:blogger.com,1999:blog-5834119896679531834.post-80641318610136468732017-11-10T01:05:00.000-05:002017-11-10T01:05:06.976-05:00Heart's Content #FridayReflectionsI would love just to be able to laze around.<br />
<br />
To read to my heart's content.<br />
<br />
To blog to my heart's content.<br />
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<br />
To take photos of my world.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNva3_QiVxvkVdIg-pEywE6RuTBC7bvIKZ_hW-svcvIVynBba2BV50LoyzYdpVWMMcEHnNOZ2HSXeqFwgUvJMZkWFC6whbabwIxn4xEU23gjVjSLpMLGUbNQSzyuZM2kXAapVr5JdcnJ8l/s1600/Golden+Hour+11-8+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNva3_QiVxvkVdIg-pEywE6RuTBC7bvIKZ_hW-svcvIVynBba2BV50LoyzYdpVWMMcEHnNOZ2HSXeqFwgUvJMZkWFC6whbabwIxn4xEU23gjVjSLpMLGUbNQSzyuZM2kXAapVr5JdcnJ8l/s320/Golden+Hour+11-8+3.jpg" width="320" /></a></div>
Yes, to my heart's content, instead of having to go to work when the world is glowing in golden hour light.<br />
<br />
But duty calls. Perhaps an issue that has to be dealt with regarding my developmentally disabled brother in law, Bil.<br />
<br />
Yes, because he is not going to be able to stay in his day program very much longer.<br />
<br />
I wonder if they've told him yet. <br />
<br />
So the contentment of my heart must wait, still again.<br />
<br />
Join Sanch Vee and other bloggers every Friday for <a href="https://www.sanchwrites.com/2017/11/burnout/" target="_blank">#FridayReflections.</a> Today's prompt: Heart's content. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com7tag:blogger.com,1999:blog-5834119896679531834.post-25270399369016406332017-11-03T06:30:00.000-04:002017-11-03T06:30:02.279-04:00The Neverending JourneyI spent some time over the weekend cleaning out the binder we store our information for Bil in. It had been a long time since we had cleaned it out, and there was a lot of out of date paper we got rid of.<br />
<br />
That binder holds a lot - nearly 15 years of advocacy, dating back to 2003. Our work on behalf of my developmentally disabled brother in law, Bil, actually goes back longer than that.<br />
<br />
15 years.<br />
<br />
Phone calls. Emails. Brochures and handouts from meetings.<br />
<br />
Evaulations.<br />
<br />
More evaluations.<br />
<br />
Meetings.<br />
<br />
More meetings. <br />
<br />
Some of the documents from the journey my husband underwent to gain guardianship of Bil.<br />
<br />
Much of it obsolete now. Much of it thrown out. Others, still valid after all these years. It makes me weary, just to think of it.<br />
<br />
All of that brought us to where we are now. Still so much up in the air.<br />
<br />
Perhaps it will be like that until we are all a distant memory, a blip in the history of the world.<br />
<br />
The more things change, the more they remain the same.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com1tag:blogger.com,1999:blog-5834119896679531834.post-22186790411603062442017-10-27T18:05:00.001-04:002017-10-27T18:05:53.186-04:00The Monster Mash #FridayReflectionsHe was a graveyard smash.<br />
<br />
He's always been attracted to horror. He didn't know quite why, but there was something exciting about being scared when he was able to control the feeling.<br />
<br />
There was so much he couldn't control. There were the schoolyard bullies when he was young. Then, when he was trying to find his way through a work world hard to understand, there was the boss that would yell and mock him. There were the sounds that overwhelmed him. There were the food textures that were unpleasant. The tags in the clothing that irritated him. The facial expressions that made no sense to him. The unpredictable thunder in thunderstorms that petrified him.<br />
<br />
He found so much in the world frightening. When something became familiar, he clung to it with all his might. Every change in his world was like an earthquake.<br />
<br />
But, the horror stories. And the horror books. It was a way of him getting revenge on his tormentors, watching them scream and then be eaten by monsters.<br />
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<br />
The song "Monster Mash", in particular, made him imagine: what if he was a famous singer? No one would make fun of him. He could do anything he wanted and he could be alone whenever he wanted. <br />
<br />
He would have his revenge at last.<br />
<br />
Today's prompt on <a href="https://www.sanchwrites.com/2017/10/another-day/" target="_blank">#FridayReflections: </a>Turn the radio on to your favorite station. Write a post using the song as your prompt.bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com3tag:blogger.com,1999:blog-5834119896679531834.post-71665923660374302222017-10-20T01:44:00.000-04:002017-10-20T06:20:46.252-04:00Them, Too? What About Those with Disabilities?My autistic brother in law, Bil, has never had a girlfriend.<br />
<br />
He is definitely interested in women, especially blondes. But I don't even know if he has ever tried to ask a woman out on a date.<br />
<br />
On the other hand, would I ever have wondered if Bil was ever a victim of unwanted advances, on the other hand?<br />
<br />
The recent #MeToo movement has made me wonder how many people outside of the disability community are aware of how often this vulnerable part of our population are subjected to this type of abuse. This is not to minimize what we of the non-disabled community have gone through (I am a woman in my 60's, so yes, I can come out and say MeToo, but that isn't the purpose of this blog post), but rather to bring up the following.<br />
<br />
Here are some troubling statistics, <a href="https://www.thearc.org/what-we-do/resources/fact-sheets/sexual-violence" target="_blank">courtesy of the national ARC: </a>I quote, and hope the ARC is OK with that. This word needs to go out.<br />
<br />
"How often do adults and children experience sexual violence?<br />
Studies consistently demonstrate that people with intellectual
disability are sexually victimized more often than others who do not
have a disability (Furey, 1994). Other studies suggest that 49 percent of people with intellectual
disability will experience 10 or more sexually abusive incidents
(Sobsey & Doe, 1991).<br />
Any type of disability appears to contribute to higher risk of
victimization but intellectual disability, communication disorders, and
behavioral disorders appear to contribute to very high levels of risk,
and having multiple disabilities (e.g., intellectual disability and
behavior disorders) result in even higher risk levels (Sullivan &
Knutson, 2000)....<br />
<br />
Women are sexually assaulted more often when compared to men whether
they have a disability or not, <span style="color: red;">so men with disabilities are often
overlooked.</span> (emphasis is mine) Researchers have found that men with disabilities are twice
as likely to become a victim of sexual violence compared to men without
disabilities (The Roeher Institute, 1995). "<br />
<br />
<i>And this....</i><br />
" How can sexual violence of people with intellectual disability be prevented?<br />
The first step is recognizing the magnitude of the problem and facing
the reality that people with intellectual disability are more likely to
be assaulted sexually than those without disabilities. Also, societal
attitudes must change to view victims with disabilities as having equal
value as victims without disabilities, and giving them equal
advocacy. Every sexual assault, regardless of who the victim is, must be
taken seriously."<br />
<br />
Yes, Bil is at risk, as is everyone else with an intellectual or communication disability, and Bil has both.<br />
<br />
I wonder....does Bil have a #MeToo story to tell?<br />
<br />
bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2tag:blogger.com,1999:blog-5834119896679531834.post-5642066928388647222017-10-13T01:28:00.000-04:002017-10-13T01:28:04.582-04:00Friday Reflections for October 13 - Do You Dare?Many community groups and nonprofits are waiting with bated breath for the outcome of the Scarecrow Decorating contest in our community. Who will win?<br />
<br />
I am a member of two nonprofits - here are their entries.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLuBO2Cyf3bNiUMVI4sSGlkyo3J6HDq1hsKEYzUE7vC0hxBnEyhhsuGNX0_e44O4C4NxxzQumB5tCfdy74WRx8Dw2f2V_T1XTLJgOxwbcGi50MiUeuAeEwUZttgqQKflKp2cGOzjv3bjdn/s1600/Achieve+Scarecrow.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLuBO2Cyf3bNiUMVI4sSGlkyo3J6HDq1hsKEYzUE7vC0hxBnEyhhsuGNX0_e44O4C4NxxzQumB5tCfdy74WRx8Dw2f2V_T1XTLJgOxwbcGi50MiUeuAeEwUZttgqQKflKp2cGOzjv3bjdn/s320/Achieve+Scarecrow.jpg" width="240" /></a></div>
ACHIEVE formerly was called ARC, which, at one time, was called the Association of Retarded Children. The name change shows just how far we have come. No one now, in our country, would ever name an organization using the "R" word.<br />
<br />
<br />
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STIC is the "Southern Tier Independence Center", a non profit for and by those who strive for independence. Their major fundraiser is a haunted house escape room- <a href="https://www.hhh-stic.com/" target="_blank">do you dare enter the Escape Room?</a><br />
<br />
I've never done escape rooms - have you?<br />
<br />
Friday the 13th - a perfect day for a post related to Halloween. <br />
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Joining Sanch Vee and other bloggers for<a href="https://www.sanchwrites.com/2017/10/the-big-reveal/" target="_blank"> #FridayReflections. </a> Today's prompt: bated breath. bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2tag:blogger.com,1999:blog-5834119896679531834.post-53503863522419476652017-10-06T06:27:00.005-04:002017-10-06T06:27:54.668-04:00Nostalgic - #FridayReflectionsIt was last September. My husband and I were sitting in his cousin's living room.<br />
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On his large screen TV, the cousin was playing DVDs of home movies his late father had taken.<br />
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On the screen, two teens and a pre-teen mock-fought in a childhood back yard.<br />
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Or, should I say, two teens mock fight, because the third boy (who may have been 10 or 11 at the time, come to think of it) wasn't really interacting with his brothers.<br />
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The movie was taken at a family picnic. Almost all the adults in the movie are now deceased.<br />
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I had never seen the home movie before, and it took me a bit to recognize the three boys. But my husband recognized them immediately. <br />
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The teens are a lot older now - two of them in their 60's, and one in his late 50's. They were my husband and his next younger brother. The youngest one, the one who really wasn't interacting, was Bil, my husband's autistic brother.<br />
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I enjoyed this tiny glimpse into their life, before I even knew them. It was a time when things just seemed simpler. We had no idea of what would come in the years since. <br />
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Nostalgia is longing for a simpler time. <br />
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My husband's teen years, in many ways, were simple. His parents were still there to make decisions, and the future was far away.<br />
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Sometimes, you just want to go back....<br />
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Join Sanch Vee and other bloggers f<a href="http://www.sanchwrites.com/2017/10/hide-and-seek/" target="_blank">or #FridayReflections</a>bookwormhttp://www.blogger.com/profile/06589840841266507266noreply@blogger.com2