How You Experience Autism

Posted by Ginger, Volunteer Mentor @gingerw, Jan 8, 2020

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

@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?

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@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

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

How do they do window visits?

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@merpreb

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

How do they do window visits?

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@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.

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@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

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@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

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@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

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@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

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@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

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

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

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@mamacita– I know that this must be frustrating for you. I think that doing this by going to the State Dept. of Health is very smart. By the way, you aren't alone, all of us are with you!

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Sending you a gentle embrace, @mamacita. I send gratitude that you took the time to check in. I think of you often.

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@lioness

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

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@lioness, Stuart, my other half, has been home since early June. He is doing really well for which we are so thankful

Since our daughter had to be rushed to the ER, she is unfortunately under observation. Fourteen days isolation from the day she was in the ER.

It just doesn't seem to stop.

The only people she gets to see are nursing home staff. They are kind and do a wonderful job taking care of their patients.

But my daughter misses us.

We will do the best we can while she waits to return to a regular room and trips down the hallway.

Face timing videos every day. Maybe some silk flowers delivered instead of fresh ones. Patients on a vent cannot receive fresh flowers or potted plants, due to the nature of their conditions.

Cards, little gifts, crafting materials. Gum, sugar free hard candies. Poor substitutes for family time.

Yet through it all she continues to make progress. Here's hoping she can return home one day soon.

Love and light,
Mamacita Jane

REPLY
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