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AspieUtah
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14 Jan 2018, 10:58 am

I didn't know if I wanted to post this until this morning.

After a somewhat successful career in law and politics over 36 years, I was her primary caregiver for the last four years. I added nursing skills and a few medical skills along the way through her needs, and my autistic ability to imitate, improvise and create. When she could still talk (before several strokes), she would tell me to "stop doing so much" to help her and maintain the house. One of the few times I refused her.

She was quite fascinated with my autism, and said that my descriptions of it matched her father's behaviors perfectly. He died of tuberculosis a year before I was born. To her, my autism seemed perfectly normal. Apparently, I had his sense of humor.

As a newly minted gay teen-ager, I noticed that she stopped attending our neighborhood LDS Church as a newly minted divorced parent. It wasn't until this week that I learned that she stopped attending because of the stage-whispered comments of other neighborhood congregants who punctuated the words "gay" and "divorced," and would leave her isolated as they always found better seats farther away from her. Many years after the fact, she presented me a folder stuffed with newspaper clippings about my LGBT political work. She had carefully and proudly read and recorded my career since its early college years. She also left me a few Easter Egg surprises among her family photographs including a few of me at ages six weeks and three months. Who knew I once had jet-black hair before becoming a towhead at age two (then auburn ginger and finally grey)?!?

On Wednesday, she will return to that same neighborhood church for the first time in years for her viewing and funeral. I would like to say that I will describe in detail the ridicule those neighbors visited on her for decades since her self-imposed absence; especially since the church now (mostly) welcomes LGBT, autistic and divorced members, but I doubt I could accomplish that goal without melting down.

So, I will remember her terminal lucidity of last week. She loved me combing her hair (it calmed her agitation) before she slept. This time, however, she turned her head to face me and opened her eyes just inches away. She didn't speak, but was staring me down with an expression that seemed to me to be her intentional way of understanding and apologizing. After a few moments, she closed her eyes and slept. A day and a half later, she stopped breathing, and died.

I will also remember her through just three things she owned (that I now own): 1) the Revereware sauce pan that she used to make the gelatin for homemade cheesecake for my birthdays (nobody else in the family liked cheesecake much), 2) the pink "SUNDANCE" sweatshirt she bought for herself when I had called her to drive to the Sundance Resort that evening for a private barbecue party that Robert Redford hosted (I teased her about how her constant looking at his butt would get me fired from my job; hehe), and 3) the annual Sears Roebuck studio photographs of me after buying new clothes for every image; they were evidence of "me" days alone with her (though I often had brief meltdowns because of the flashes, noises and tedium).

This is the obituary that should have been written.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


Piobaire
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14 Jan 2018, 11:27 am

My condolences; may you find deep peace in those memories.



AspieUtah
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14 Jan 2018, 11:46 am

Piobaire wrote:
My condolences; may you find deep peace in those memories.

Thank you. Yes, I have.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


VegetableMan
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14 Jan 2018, 11:58 am

I was in the position of being my mother's primary for many years before her death in May of last year. Much respect for taking on that very trying role, and my deepest condolences for your loss.


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AspieUtah
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14 Jan 2018, 12:05 pm

VegetableMan wrote:
I was in the position of being my mother's primary for many years before her death in May of last year. Much respect for taking on that very trying role, and my deepest condolences for your loss.

Thank you. It was difficult, we would often "snap" and bark at each other, but for the most part, we never let it affect us overall.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


kraftiekortie
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14 Jan 2018, 12:23 pm

My condolences, Sir.

It really seems like your mother is (it’s never past tense for someone you love) a most unique woman.

You made her happy, and able to “go” with no pain, nice memories, and her son at her side.



elsapelsa
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14 Jan 2018, 12:46 pm

It is an absolutely beautiful obituary, few have the gift of being able to pass surrounded by such genuine love and mutual respect. Your words echo that you both really knew and accepted eachother and it is something I don't quite have yet with my mum although I will always aspire to it.


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AspieUtah
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14 Jan 2018, 12:53 pm

kraftiekortie wrote:
My condolences, Sir.

It really seems like your mother is (it’s never past tense for someone you love) a most unique woman.

You made her happy, and able to “go” with no pain, nice memories, and her son at her side.

Thank you. I also use present tense with others who are simply "elsewhere" for now. She has many lifelong friends and four children. After her divorce, she took night classes to learn accounting, and ended up as an accountant for a mining company where she had to sign federal papers to buy, assign and transport explosives. Plus, she was a very good bowler and expert gardner. What a renaissance woman! :wink:


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


AspieUtah
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14 Jan 2018, 12:54 pm

elsapelsa wrote:
It is an absolutely beautiful obituary, few have the gift of being able to pass surrounded by such genuine love and mutual respect. Your words echo that you both really knew and accepted eachother and it is something I don't quite have yet with my mum although I will always aspire to it.

Thank you for your kind words. :D


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


CockneyRebel
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15 Jan 2018, 12:48 am

Sweet Pea hugs.


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ASPartOfMe
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15 Jan 2018, 3:12 am

The world has lost a very curious and accepting person who was ahead of her time. She has left to the world and WP a first class person.


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SpiceWolf
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15 Jan 2018, 5:42 am

I'm sorry for your loss.
Your mum was fortunate I think, I have worked in Age care, so I know that many pass on alone.



AspieUtah
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15 Jan 2018, 9:12 am

CockneyRebel wrote:
Sweet Pea hugs.

Hugs in return with a snappy Sgt. Schultz salute!


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


Esmerelda Weatherwax
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15 Jan 2018, 9:25 am

I'm so sorry. Reading your posts, it seems as though you gave her your best and she understood that, and appreciated it. That's the thing that will comfort you most, I suspect. Love is a verb, it shows in our actions...

Hugs.


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AspieUtah
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15 Jan 2018, 9:37 am

ASPartOfMe wrote:
The world has lost a very curious and accepting person who was ahead of her time. She has left to the world and WP a first class person.

Thank you! Yes, her grandmother influenced my mother greatly. "Little grandma" (small Welsh stature) was educated by black share croppers (former slaves) during the Georgia reconstruction era after the Civil War despite being part of a white share-cropper family; proving that there are no differences among the working class.

While her terminology was always blunt (see Mark Twain), her opinions intended an undying admiration for her black educators and friends. Surrounded by a family with more women than men, little grandma shared her fandom of black athletes with her female cohorts including my mother's mother and my mother as well. I grew up thinking it a little odd that a room full of women were cheering basketball games and Muhammad Ali fights. Hehe.

With such influence, how could my mother not be a bit of a maverick?


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


AspieUtah
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15 Jan 2018, 9:40 am

SpiceWolf wrote:
I'm sorry for your loss.
Your mum was fortunate I think, I have worked in Age care, so I know that many pass on alone.

Thank you. That was always a fear I had; that she would die overnight when I had no choice but to sleep after caring for her during 16-hour days. While it will likely diminish, I have thought about my chances of dying alone. Hm.


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Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)