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

Interested in more discussions like this? Go to the Autism (ASD) Support Group.

@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

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

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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

Jump to this post

@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

Jump to this post

@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!

REPLY

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

REPLY
@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
@colleenyoung

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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@Colleen Young, I receive that hug with gratitude. I have thought of you all every single day that I've been away.

I was afraid I might not ever be able to return. Such was the despair and pain in my heart.

Stress from living with a pandemic at our doorstep , serious medical conditions, and long term hospitalization almost did us in.

But we have survived.
We are still here.
Life goes on. And we are all changed.

Thankful for this "tribe" of beautiful souls.

Love and light,
Mamacita Jane

REPLY
@mamacita

@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

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@mamacita I'm glad to hear your hubby is home praying for your daughter to be home soon also I can imagine how hard this must be on you Bless you and keep looking up

REPLY
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