How You Experience Autism

I'm so sorry that the love of your life is going through yet another procedure, @mamacita. I do hope this one is helpful to him. Be courageous my dear friend. This too will pass. Love, light and peace to you!

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@gingerw , hello from the hospital where my honey has finally fallen asleep. He is making progress. Two tubes have been removed. Two more will be removed tomorrow. He looks great and feels good .

How I experience Autism in the middle of the pandemic.

Let me give you an example. I hate wearing a mask. It is a terrible source of anxiety for me. I can't breathe Anything on my face bothers me. Just the touch of a single hair brushing my face sets off a sensory response. Masks are a constant reminder that everything is not ok out.there.

So, having established the fact that my nerves are on edge, you can understand to a certain degree why I ended up in the wrong restroom. And that's not all.

When I got in line to turn in my paperwork (Have you had any of these symptoms in the past week?) I HAD CHECKED EVERY single symptom.

Then I was redirected to complete a new sheet, forcing myself to get in the back of the line to get my temperature checked.

Then I got in the line...six feet of separation...to show my I'D and have the attendant call the nurse to alert her I was coming up to visit Stuart.

But the individual behind me, less than six feet away, had her mask below her chin. At this predicament, I just mentally gave up and moved as far away from her as I could.

Oy vey.

I laugh, because this is my life.
I laugh, because I know that things will get better.
I laugh, because there is indeed a light at the end of the tunnel.

This virus has impacted the entire world. It has definitely impacted our beloved Autism Community. But we are still here for one another in all the ways that count.

And we will come back stronger.

God bless you all.

Love and light,
Mamacita Jane

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@mamacita You are such a beacon in this time. Your coping skills put mine to shame. I find myself trying to step back and ending up stepping into awkward situations. The other day at the store [masks required of all there] a lady wore hers in, then hung it ofc her finger whole shopping. I couldn't let that go. Why I am not bald from constantly combing fingers through my hair as a calming ritual, is beyond me. Deep breaths. Poor sleep. Frustration at the littlest thinga.

Give your hubby and yourself a hug from me. Holding you and your family close in heart.
Ginger

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@gingerw , hello from the hospital where my honey has finally fallen asleep. He is making progress. Two tubes have been removed. Two more will be removed tomorrow. He looks great and feels good .

How I experience Autism in the middle of the pandemic.

Let me give you an example. I hate wearing a mask. It is a terrible source of anxiety for me. I can't breathe Anything on my face bothers me. Just the touch of a single hair brushing my face sets off a sensory response. Masks are a constant reminder that everything is not ok out.there.

So, having established the fact that my nerves are on edge, you can understand to a certain degree why I ended up in the wrong restroom. And that's not all.

When I got in line to turn in my paperwork (Have you had any of these symptoms in the past week?) I HAD CHECKED EVERY single symptom.

Then I was redirected to complete a new sheet, forcing myself to get in the back of the line to get my temperature checked.

Then I got in the line...six feet of separation...to show my I'D and have the attendant call the nurse to alert her I was coming up to visit Stuart.

But the individual behind me, less than six feet away, had her mask below her chin. At this predicament, I just mentally gave up and moved as far away from her as I could.

Oy vey.

I laugh, because this is my life.
I laugh, because I know that things will get better.
I laugh, because there is indeed a light at the end of the tunnel.

This virus has impacted the entire world. It has definitely impacted our beloved Autism Community. But we are still here for one another in all the ways that count.

And we will come back stronger.

God bless you all.

Love and light,
Mamacita Jane

Jump to this post

@gingerw , hello from the hospital where my honey has finally fallen asleep. He is making progress. Two tubes have been removed. Two more will be removed tomorrow. He looks great and feels good .

How I experience Autism in the middle of the pandemic.

Let me give you an example. I hate wearing a mask. It is a terrible source of anxiety for me. I can't breathe Anything on my face bothers me. Just the touch of a single hair brushing my face sets off a sensory response. Masks are a constant reminder that everything is not ok out.there.

So, having established the fact that my nerves are on edge, you can understand to a certain degree why I ended up in the wrong restroom. And that's not all.

When I got in line to turn in my paperwork (Have you had any of these symptoms in the past week?) I HAD CHECKED EVERY single symptom.

Then I was redirected to complete a new sheet, forcing myself to get in the back of the line to get my temperature checked.

Then I got in the line...six feet of separation...to show my I'D and have the attendant call the nurse to alert her I was coming up to visit Stuart.

But the individual behind me, less than six feet away, had her mask below her chin. At this predicament, I just mentally gave up and moved as far away from her as I could.

Oy vey.

I laugh, because this is my life.
I laugh, because I know that things will get better.
I laugh, because there is indeed a light at the end of the tunnel.

This virus has impacted the entire world. It has definitely impacted our beloved Autism Community. But we are still here for one another in all the ways that count.

And we will come back stronger.

God bless you all.

Love and light,
Mamacita Jane

Jump to this post

Though certain phrases connected, the article in whole did not resonant with me. I am currently accepting the DX of autism. I was diagnosed with Asperger's in the late 60s, and learned to emulate the perfect little girl after 3 years of intense therapy (more like dog training). In the irony of the universe, both the men I had children with ended up being on the spectrum so all three of my living children have some effect, especially the boys.
My assimilation was successful for many years until I was rehabilitated from a head injury car accident in mid 90s. Since then it has been a struggle to pretend to be the same person everyone was familiar with. Though from childhood I have never been able to tie laced shoes correctly, tell time (the accompanying dyslexia affected numbers greater) on standard clock, say certain words. I enjoy gentle fabrics but had learned to tolerate most tactile sensations (my therapist was like an episode in the rainmaker with more hostility towards me...~sigh. But it did work in my case). Currently my quirks that disable is phobia anxieties (mail box, driving, opening envelopes) and my inability to keep proper expressions and eye contact during conversations and interviews. As child and teen I was precocious, friendly, irreverent, athletic(but not into team sports). Yet I accepted very few close friends, trusted fewer and despised my generation peers. I liked adults or very young children. I didn't want to be "lonely" but preferred to be "left alone'. I liked socializing in 'settings' like holidays or event functions (weddings, charity events, banquets, select dances)...otherwise if there was more than 4 people I would bail.
My youngest with DX of Autism at age 3 after a sudden onset following illness became non responsive and non verbal. 2 years later he became more responsive but verbal ability and static communication ability have yet to reach a standard of safe independent function. If the spectrum is truly caused by same thing I'd be surprised since his expression and mine are a universe apart though sharing certain aspects of galaxies,
In her article the one thing similar is SOUND. Suppressing irritability, because I can hear the tags of my neighbors dog jingling while it scratches or hear people chattering and scuffing feet two houses down at midnight before they finally pass, is quite challenging. My type migraines also are problematic (Vestibular and Aural).
Dealing with my son's autism is another life challenge. for the most part we live amiably but I worry about his future since I am considerably older and his father is untrustworthy to be a caretaker as our his siblings who are not close. He doesn't accept a lot of people in his inner world (at home persona) though he is pretty friendly and has few 'space' /'touch' issues; his public self and home self have different criteria of tolerances. I want him to continue to expresses what he wants and do what he wants in his own time, which most group homes do not really accommodate. He has weird sleep hours that are not going to be coaxed (he is now 14... how many more years would it take). He likes to create works of art or just doodle, He plays a modest amount of games online and off (far less than I do..lol). He sings lovely despite rarely speaking, and plays guitar and harmonica so far. He is really proficient in math. He can cook modest dishes on cook top(like omlette, sausage, hot dog ramen, grill cheese) in reliable way (proper use like temp and on/off procedures) and make sandwiches, he does typical housework without prompting. Our chores have no schedule except Thurs. Just who sees it, does it on the spot. But his current ability would unlikely be able to watch paying bills for overhead or notice embezzlement from a dishonest caretaker nor do I think he would learn to drive. His ability to take typical instructions for complicated tasks is greatly retarded though once he learns it is engraved in steel. So driving, cashiering/counter service even data entry...nixed.

My "experience" is that of a camouflaged alien. Though I was good at pretending to be human and assimilated well, there was always some uncanny valley that would make humans mark me as "different". It was hard stressful work every day from the moment I wake to bedtime until it became automatic. But when getting praised for ability, I would also appear insincere, uncaring if I used autopilot too much. If in new situation and anxious I'd be assumed scatterbrained. Just no winning for being born on the wrong planet. ~sigh

Jump to this post

Though certain phrases connected, the article in whole did not resonant with me. I am currently accepting the DX of autism. I was diagnosed with Asperger's in the late 60s, and learned to emulate the perfect little girl after 3 years of intense therapy (more like dog training). In the irony of the universe, both the men I had children with ended up being on the spectrum so all three of my living children have some effect, especially the boys.
My assimilation was successful for many years until I was rehabilitated from a head injury car accident in mid 90s. Since then it has been a struggle to pretend to be the same person everyone was familiar with. Though from childhood I have never been able to tie laced shoes correctly, tell time (the accompanying dyslexia affected numbers greater) on standard clock, say certain words. I enjoy gentle fabrics but had learned to tolerate most tactile sensations (my therapist was like an episode in the rainmaker with more hostility towards me...~sigh. But it did work in my case). Currently my quirks that disable is phobia anxieties (mail box, driving, opening envelopes) and my inability to keep proper expressions and eye contact during conversations and interviews. As child and teen I was precocious, friendly, irreverent, athletic(but not into team sports). Yet I accepted very few close friends, trusted fewer and despised my generation peers. I liked adults or very young children. I didn't want to be "lonely" but preferred to be "left alone'. I liked socializing in 'settings' like holidays or event functions (weddings, charity events, banquets, select dances)...otherwise if there was more than 4 people I would bail.
My youngest with DX of Autism at age 3 after a sudden onset following illness became non responsive and non verbal. 2 years later he became more responsive but verbal ability and static communication ability have yet to reach a standard of safe independent function. If the spectrum is truly caused by same thing I'd be surprised since his expression and mine are a universe apart though sharing certain aspects of galaxies,
In her article the one thing similar is SOUND. Suppressing irritability, because I can hear the tags of my neighbors dog jingling while it scratches or hear people chattering and scuffing feet two houses down at midnight before they finally pass, is quite challenging. My type migraines also are problematic (Vestibular and Aural).
Dealing with my son's autism is another life challenge. for the most part we live amiably but I worry about his future since I am considerably older and his father is untrustworthy to be a caretaker as our his siblings who are not close. He doesn't accept a lot of people in his inner world (at home persona) though he is pretty friendly and has few 'space' /'touch' issues; his public self and home self have different criteria of tolerances. I want him to continue to expresses what he wants and do what he wants in his own time, which most group homes do not really accommodate. He has weird sleep hours that are not going to be coaxed (he is now 14... how many more years would it take). He likes to create works of art or just doodle, He plays a modest amount of games online and off (far less than I do..lol). He sings lovely despite rarely speaking, and plays guitar and harmonica so far. He is really proficient in math. He can cook modest dishes on cook top(like omlette, sausage, hot dog ramen, grill cheese) in reliable way (proper use like temp and on/off procedures) and make sandwiches, he does typical housework without prompting. Our chores have no schedule except Thurs. Just who sees it, does it on the spot. But his current ability would unlikely be able to watch paying bills for overhead or notice embezzlement from a dishonest caretaker nor do I think he would learn to drive. His ability to take typical instructions for complicated tasks is greatly retarded though once he learns it is engraved in steel. So driving, cashiering/counter service even data entry...nixed.

My "experience" is that of a camouflaged alien. Though I was good at pretending to be human and assimilated well, there was always some uncanny valley that would make humans mark me as "different". It was hard stressful work every day from the moment I wake to bedtime until it became automatic. But when getting praised for ability, I would also appear insincere, uncaring if I used autopilot too much. If in new situation and anxious I'd be assumed scatterbrained. Just no winning for being born on the wrong planet. ~sigh

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@mamacita It's a tough decision, and shows your strength indeed. And shows how much you care for the well-being of your daughter, her son, your family, and yourself. There may be those who cannot understand this move. We are here for you, cup of tea or coffee ready to hand you, a cozy blanket to wrap up in.
Ginger

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