Mayo Clinic Connect
I came across this article today, posted on The Mighty. I “get” it, as it is familiar to me. How do you react to her vision of the manifestation in her life?https://themighty.com/2016/04/what-does-autism-feel-like/Ginger
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@gingerw , hello from a safe distance! I am sitting here at Taco Mama's, where I just had a delicious burrito bowl. The only real carbs were in a few little black beans.
My sweetie is undergoing surgery, again, to place a drain into the pericardial sack. They are updating me every hour or so. This has been a sensory issued person's nightmare. Construction is going on, and it is so loud. The parking garage is creepy.
But my faith is greater than the creepy parking garage. My love for my husband is greater than the pain of walking forever with my cane in the heat so I don't lose my parking spot. My hope is,steadfast, because I have friends like you who have said I can be strong when I need to be.
Autism does not go quietly away when under pressure. But it has learned how to make the best of a hard situation. And to practice mindfulness and self care.
I am alone, because only one person can be with him. All thanks to Covid19.
Just checking in.
Thanks for befriending this Autie.
Love and light,
Jump to this post
@mamacita, I was just thinking about you and voila you post an update. Thank goodness you have your years of practising mindfulness and self care to help you through times like these. Your family's health issues started long before COVID. This has been a long marathon for you. Who do you go to for strength, comfort and just to be able to let go for a minute?
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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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It is so good to hear from you @marmacita despite your sad news. Your feelings for your husband are so sweet. I'm still in love with my husband of 39 years. It must be torturous, your long journey with him and your daughter. You are a strong and powerful woman, relay on that! I'm wondering how your daughter is?
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@colleenyoung , I go to the Rock, my strong tower. My hiding place. My Shelter in the time of storm. I read my daily devotional, from a slew of favorites collected over the years. I play praise and worship music. I listen to the birds. I daydream. I pray. I read Psalm 91. I play the piano. I clean and organize. I read. I constantly review my bag of tricks and find other ways to self regulate. I spend time with my family. I try to connect with friends. I come here.
Love and light,
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@merry, it is good to see you! Thank you for asking about my daughter. She is slowly recovering at a rehab facility in Tennessee. To find her way back is not easy. It will take a lot of work on her part. She is in a good place, and we hope to see her when Covid19 settles down.
We are able to talk wirh her frequently. They are working on trying to get her off the ventilator permanently. Her lungs are damaged and we don't know if that will be possible. But we have hope.
We just take it one day at a time.
Love and light,
@teresa, I do feel so bad for my poor sweet husband. He just wants to get back home so badly. We hope this is the last surgery for a very long time. I just want him to be able to enjoy his backyard, his,Grandkids, his war games, and his science shows on tv. I want him to be able to safely attend church with the people who love him. Simple things are the best.
@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.
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.
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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.
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@gingerw You have more control then me . I just confronted a man who had his mask around his chin hollering at a cashier . It just blurted out Get a grip and leave . I was so embarrased everyone in line heard me . The lady back of me just looked ?
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@mamacita– You are certainly a light for all of us
I have just rejoined Connect as a Volunteer Mentor. I noticed you haven't posted for a few weeks and I'm wondering if you are OK? Please let me know Mamacita. I miss you.
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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
Hello @dowagerginger and welcome to Mayo Connect! I'm glad that you found Connect and posting in various discussions. From what you say in this post, it appears that you have a lot of personal insight into your own autism and that of your children.
If you care to share more, what has been the most difficult adjustment for you and others who are on the spectrum? Is it the acceptance of yourself or acceptance by others?
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@dowagerginger Let me add my welcome to Mayo Connect, where we have the opportunity to share experiences and relay what has worked [or not worked!] for us on our journeys. May I ask how you heard about Mayo Connect?
Just like so many health issues, be they mental or physical, it seems each person has their own take on the situation. It's always important for me to remember that, as it helps me understand myself more. As far as being on the autism spectrum, I was formally diagnosed in 2013 or so, and it really assisted in letting me see how my life as progressed, and the issues that made me uncomfortable were not always my doing, or of those around me. Acceptance of such a diagnosis is important.
There are many of us "auties" here on Mayo Connect. I invite you to look at this group https://connect.mayoclinic.org/group/autism/
You will see there are several different discussions in process, some of which may be of interest to you. @mamacita is a person who eloquently describes her life as a person on the spectrum.
@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.
My son had cancer of the brain. He started having seizures at the age of 31. He was married and had a darling boy and a beautiful step-daughter. He had such headaches. I wouldn't begin to know how they felt to him. Trip after trip to the hospital until he was sent to the hospital in Columbus. The best surgeon there operated on him. He said my son would never have another surgery. Well, his wife left him, the children ended up with foster parents, I was the only caretaker for a long, long time. It wore me to a frazzle and I finally passed out. I took him back to the hospital and told them either admit him or me. They did admit him and he was there for weeks. No wonder I couldn't take care of him–it took three or more people. He had a long, long bout of cancer, I took him back. Then he decided he wanted his own place. He got a one room efficiency apartment. He couldn't take care of it. I tried but I couldn't take care of two places let alone get his groceries, do his laundry. I knew he had to go to a nursing home. I just couldn't bring myself to do it. I didn't have to make the decision. His landlord did. My son's brain was so mixed up, he went knocking on everyone's door, asking if they knew where his son was. My son was in the nursing home for SEVEN Years! Thank God they placed him in one only one mile from my house. He passed on my birthday which was a gift from God because his life was so painful and miserable. Cancer is a horrible disease.
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