How You Experience Autism

Posted by Ginger, Volunteer Mentor @gingerw, Jan 8 11:07am

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

@woogie

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.

Jump to this post

How difficult for you, @woogie. You understand a lot about cancer and it's affects on both the patient and the family.

REPLY
@woogie

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.

Jump to this post

@woogie Your situation sounds like it was so stressful. How are you doing these days, now?
I wonder if the loss and grief group might be of interest to you? https://connect.mayoclinic.org/group/loss-grief/
A couple of conversations that stood out to me are the journey of grieving https://connect.mayoclinic.org/group/loss-grief/ and loss and grief, how are you doing https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/
I hope you will check them out and let me know from those conversations, how you are doing?
Ginger

REPLY
@mamacita

@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

Hi @mamacita, I've been thinking about you. How are you and your family doing?

REPLY
@colleenyoung

Hi @mamacita, I've been thinking about you. How are you and your family doing?

Jump to this post

@colleenyoung, tbank you for inquiring about our little family. Stuart is doing well. My family from Georgia has moved in with us temporarily. School has started back for the 7 year old (in person) and the 15 year old. (homeschool) My Mother had a saying, and it must be a Southern thing. Some days you feel like you are walking in syrup.

I want so badly to return to Connect on a regular basis. Perhaps today is the day that I begin to figure out how to do that. I'm not the same person I was five months ago, before all this Corona virus thing landed in our collective laps.

Love and light, my dear Connect family,
Mamacita Jane

REPLY
@mamacita

@colleenyoung, tbank you for inquiring about our little family. Stuart is doing well. My family from Georgia has moved in with us temporarily. School has started back for the 7 year old (in person) and the 15 year old. (homeschool) My Mother had a saying, and it must be a Southern thing. Some days you feel like you are walking in syrup.

I want so badly to return to Connect on a regular basis. Perhaps today is the day that I begin to figure out how to do that. I'm not the same person I was five months ago, before all this Corona virus thing landed in our collective laps.

Love and light, my dear Connect family,
Mamacita Jane

Jump to this post

Dear @mamacita,

It is so good to read your post! I'm glad to read that your husband is doing well and that your family from Georgia is with you.

Love, light, and cyber hugs right back to you, Mamacita! Whenever you are able to post on Connect, we will be here and appreciate your kind, loving words!

REPLY
@mamacita

@colleenyoung, tbank you for inquiring about our little family. Stuart is doing well. My family from Georgia has moved in with us temporarily. School has started back for the 7 year old (in person) and the 15 year old. (homeschool) My Mother had a saying, and it must be a Southern thing. Some days you feel like you are walking in syrup.

I want so badly to return to Connect on a regular basis. Perhaps today is the day that I begin to figure out how to do that. I'm not the same person I was five months ago, before all this Corona virus thing landed in our collective laps.

Love and light, my dear Connect family,
Mamacita Jane

Jump to this post

@mamacita– A big hello !! I'm a northern girl but love your mom's saying. Hopefully, I'll be able to use it and impress everyone on my humor! I am so happy to hear that Stuart is doing well. How is your daughter?

REPLY
@merpreb

@mamacita– A big hello !! I'm a northern girl but love your mom's saying. Hopefully, I'll be able to use it and impress everyone on my humor! I am so happy to hear that Stuart is doing well. How is your daughter?

Jump to this post

@merry, Volunteer Mentor, wonderful to hear from you. By all means, use my Southern Mama's term for feeling stuck and overwhelmed.

Every day comes with new trials and challenges. Guess that holds true for all of us.

My daughter remains in a special care facility for those who are on ventilators. They are trying to wean her off of the vent. Some days we are able to see the light at the end of the tunnel.

Other days, like a few days ago, she coded. She was taken to a hospital. They sent her back home. Did not keep her overnight.

The Nursing Home says we cannot visit her through the window. I will be contesting this decision. I will try the honey and cinnamon approach at first. If they do not allow us to have a window visit we will proceed further using all the tricks in our bag.

We need to see our daughter. We have not laid eyes on her since March. We will do anything and everything we can legally to make that happen.

My other daughter reached out to her colleagues all across the country and was told that they are allowing window visits everywhere.

Prayers and good thoughts much appreciated.
Love and light,
Mamacita Jane

REPLY
@mamacita

@merry, Volunteer Mentor, wonderful to hear from you. By all means, use my Southern Mama's term for feeling stuck and overwhelmed.

Every day comes with new trials and challenges. Guess that holds true for all of us.

My daughter remains in a special care facility for those who are on ventilators. They are trying to wean her off of the vent. Some days we are able to see the light at the end of the tunnel.

Other days, like a few days ago, she coded. She was taken to a hospital. They sent her back home. Did not keep her overnight.

The Nursing Home says we cannot visit her through the window. I will be contesting this decision. I will try the honey and cinnamon approach at first. If they do not allow us to have a window visit we will proceed further using all the tricks in our bag.

We need to see our daughter. We have not laid eyes on her since March. We will do anything and everything we can legally to make that happen.

My other daughter reached out to her colleagues all across the country and was told that they are allowing window visits everywhere.

Prayers and good thoughts much appreciated.
Love and light,
Mamacita Jane

Jump to this post

@mamacita– Have the doctors decided what caused your daughter's problems? Did they settle on a stroke?

How do they do window visits?

REPLY
@merpreb

@mamacita– Have the doctors decided what caused your daughter's problems? Did they settle on a stroke?

How do they do window visits?

Jump to this post

@merpreb, right now they aren't doing window visits at all. Hamilton County is a hot spot. Way too many positive Covid19 cases. When the numbers come down, they will do the window visits again. Window visits are simply that. No physical contact at all. But on the positive side, you get to see your loved one.

The social worker called me and I gave her an earful. I was nice, but I let her know my thoughts on the entire subject. Hopefully she came away from the conversation knowing my daughter has a family that just wont quit.

At the end I expressed my desire to work together on this problem. I know they are following protocol, but I believe the protocol needs to be changed. So, onward to the State Department of Health I go. Visits through the window could be set up for certain times of the day. All health precautions should be utilized, if for instance, one has to enter the building to get to the courtyard. Patients who may not be alive in the weeks to come, they need to see their families one more time. I know it will kill my soul if my daughter dies in that facility without having seen her son. Or the rest of us.

Thanks for letting me vent. Hopefully my experience will strike a cord with someone else and allow them to say "Hey, I'm not alone. "

#Surviving the pandemic while Autistic#wearebettertogether#notgivingup

Love and light,
Mamacita Jane

REPLY

@merpreb, the nurse explained to us that the vagus nerve was engaged, and that caused her to lose consciousness. They are working on a plan of action to try to prevent that from happening.

REPLY
@mamacita

@merpreb, right now they aren't doing window visits at all. Hamilton County is a hot spot. Way too many positive Covid19 cases. When the numbers come down, they will do the window visits again. Window visits are simply that. No physical contact at all. But on the positive side, you get to see your loved one.

The social worker called me and I gave her an earful. I was nice, but I let her know my thoughts on the entire subject. Hopefully she came away from the conversation knowing my daughter has a family that just wont quit.

At the end I expressed my desire to work together on this problem. I know they are following protocol, but I believe the protocol needs to be changed. So, onward to the State Department of Health I go. Visits through the window could be set up for certain times of the day. All health precautions should be utilized, if for instance, one has to enter the building to get to the courtyard. Patients who may not be alive in the weeks to come, they need to see their families one more time. I know it will kill my soul if my daughter dies in that facility without having seen her son. Or the rest of us.

Thanks for letting me vent. Hopefully my experience will strike a cord with someone else and allow them to say "Hey, I'm not alone. "

#Surviving the pandemic while Autistic#wearebettertogether#notgivingup

Love and light,
Mamacita Jane

Jump to this post

@mamacita I am so happy to see you here today! You have no idea how many times thoughts about you wandered my mind in these last several weeks. Yesterday on my drive home from appointments, I was honored to see a pair of bald eagles in flight. I know that was a sign. A turning point for your situation, I hope! Those window visits should be something they can arrange. Can a separate entrance be used to allow visitors in to the courtyard?

Absolutely right, better together, standing together, we make it through.
Ginger

REPLY
@gingerw

@mamacita I am so happy to see you here today! You have no idea how many times thoughts about you wandered my mind in these last several weeks. Yesterday on my drive home from appointments, I was honored to see a pair of bald eagles in flight. I know that was a sign. A turning point for your situation, I hope! Those window visits should be something they can arrange. Can a separate entrance be used to allow visitors in to the courtyard?

Absolutely right, better together, standing together, we make it through.
Ginger

Jump to this post

@gingerw, please, please forgive me for not emailing you. I have your email address right there on my refrigerator door so as never, ever, to lose it.

My executive functioning abilities took a distinct plunge after my sweet heart came home. Its kind of like I was holding on for dear life and managing but when he came home and the kids moved in everything stopped with a grinding halt. When I get like that, I have discovered that my brain needs a reset. Slowly but surely I am getting back to the old me.

Thank you for not getting put out with me. These are such difficult times for every one of us. I am so thankful for your friendship.More to come. Stay safe, my friend.
Your Autie sister,
Mamacita Jane

REPLY

@teresa, Volunteer Mentor,
I am ecstatic to have the chance to "see" you all again. My brain has had so much difficulty managing everything that has been going on. I find myself stimming, from a variety of options. I've also implemented more self care. I think we all need to do that to balance out the craziness all around us.

I hope that you and your family are well. My hope and prayer is that we all come through this together. We build each other up, with just a word or a small act of kindness.

I know I would have fared much worse if I had not had my tribe behind me.

Love and light,
Mamacita Jane

REPLY
@mamacita

@gingerw, please, please forgive me for not emailing you. I have your email address right there on my refrigerator door so as never, ever, to lose it.

My executive functioning abilities took a distinct plunge after my sweet heart came home. Its kind of like I was holding on for dear life and managing but when he came home and the kids moved in everything stopped with a grinding halt. When I get like that, I have discovered that my brain needs a reset. Slowly but surely I am getting back to the old me.

Thank you for not getting put out with me. These are such difficult times for every one of us. I am so thankful for your friendship.More to come. Stay safe, my friend.
Your Autie sister,
Mamacita Jane

Jump to this post

@mamacita No bad feelings, just very concerned and amazed how you are keeping your equilibrium in all this! The image is of one of those children's roly-poly toys, with sand in the bottom. No matter how you punch them they come back to right. I am so glad to see you back as you can.

We're leaving the teakettle on, and your mug is on the table. Drop in when you can, sending virtual hugs of support,
Ginger

REPLY
@mamacita

@teresa, Volunteer Mentor,
I am ecstatic to have the chance to "see" you all again. My brain has had so much difficulty managing everything that has been going on. I find myself stimming, from a variety of options. I've also implemented more self care. I think we all need to do that to balance out the craziness all around us.

I hope that you and your family are well. My hope and prayer is that we all come through this together. We build each other up, with just a word or a small act of kindness.

I know I would have fared much worse if I had not had my tribe behind me.

Love and light,
Mamacita Jane

Jump to this post

@mamacita. Glad to hear your doing well from your ordeal of hospital is everyone home now?

REPLY
Please login or register to post a reply.