1. < Autism (ASD)
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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.

sirgalahad | @sirgalahad | Feb 24, 2020
In reply to @gingerw "@sirgalahad I am so glad you were able to give some advice for @Mamacita's drs to..." + (show)
@gingerw

@sirgalahad I am so glad you were able to give some advice for @mamacita's drs to follow, and imagine this! it was from a great distance! Thank you for your insight. We are blessed to have you amongst us.
Ginger

Jump to this post

thankyou Ginger

REPLY
Mamacita, Alumna Mentor | @mamacita | Feb 24, 2020

@auntieoakley , @sirgalahad , and @colleenyoung ...@lioness, everyone...@gingerw, @johnbishop ,all of our Mayo Clinic family....

A long shower and warm food in one's own home goes a long way towards getting back to normalcy, even if it is only for a little while.

Down here, you have to get to the hospital at the same time the doctors are finished seeing their patients, so you can catch them before they leave for their offices.

Today I was fortunate in that I met with four of her doctors. All of them responded to any questions I had and showed me kindness and respect.

I have been on autopilot, probably masking too much, but it is so important for the physicians to have a complete profile of their patient. Especially when the patient has multiple serious conditions such ad CHF, COPD, Lymphedema, Cellulitis, Diabetes, etc.

Simple things like finding clothes to wear tomorrow and asking the teen if we should make spaghetti for dinner tomorrow night, are helpful ways of grounding myself. Do I wear a little bit of the cologne she gave me for Christmas, or do I wear the Wal Mart special I really like?

Do I play songs on the piano, or do I listen to YouTube inspirational music? Sure, it's not rocket science. But it helps to ground me. Because when I enter those doors in ICU I have almost no control over what happens to my daughter.

I am washing a load of laundry, another bit of everyday life that speaks "normalcy." I close my eyes and wonder for a monent what tomorrow will bring. I dare not be so hopeful that I become unrealistic. It could all go south in the blink of an eye.

Praying that is not the case. Hoping for the best.
Grateful for you all here.

Mamacita Jane

REPLY
2 replies
lioness | @lioness | Feb 24, 2020

@mamacita Very well put as a former ICU nurse know she is being very well taken care of. But it's not like a Mother's love rest easy tonight. Your all in my
thoughts

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Feb 24, 2020

@mamacita Sending this from my phone because I have to send this tonight to you. Be gentle on yourself. Relish each moment of normalcy in each of these days of chaos. Remember we are all here for you and your family and will be on the sidelines just waiting to get called in to play. Sending you a ton of hugs and support.
Ginger

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sirgalahad | @sirgalahad | Feb 24, 2020
In reply to @mamacita "@auntieoakley , @sirgalahad , and @colleenyoung ...@lioness, everyone...@gingerw, @johnbishop ,all of our Mayo Clinic family.... A..." + (show)
@mamacita

@auntieoakley , @sirgalahad , and @colleenyoung ...@lioness, everyone...@gingerw, @johnbishop ,all of our Mayo Clinic family....

A long shower and warm food in one's own home goes a long way towards getting back to normalcy, even if it is only for a little while.

Down here, you have to get to the hospital at the same time the doctors are finished seeing their patients, so you can catch them before they leave for their offices.

Today I was fortunate in that I met with four of her doctors. All of them responded to any questions I had and showed me kindness and respect.

I have been on autopilot, probably masking too much, but it is so important for the physicians to have a complete profile of their patient. Especially when the patient has multiple serious conditions such ad CHF, COPD, Lymphedema, Cellulitis, Diabetes, etc.

Simple things like finding clothes to wear tomorrow and asking the teen if we should make spaghetti for dinner tomorrow night, are helpful ways of grounding myself. Do I wear a little bit of the cologne she gave me for Christmas, or do I wear the Wal Mart special I really like?

Do I play songs on the piano, or do I listen to YouTube inspirational music? Sure, it's not rocket science. But it helps to ground me. Because when I enter those doors in ICU I have almost no control over what happens to my daughter.

I am washing a load of laundry, another bit of everyday life that speaks "normalcy." I close my eyes and wonder for a monent what tomorrow will bring. I dare not be so hopeful that I become unrealistic. It could all go south in the blink of an eye.

Praying that is not the case. Hoping for the best.
Grateful for you all here.

Mamacita Jane

Jump to this post

luvs you big sister dear jaynee

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25, 2020
In reply to @lioness "@mamacita Very well put as a former ICU nurse know she is being very well taken..." + (show)
@lioness

@mamacita Very well put as a former ICU nurse know she is being very well taken care of. But it's not like a Mother's love rest easy tonight. Your all in my
thoughts

Jump to this post

What a lovely thought! This came from your work experience as well as from your heart, @lioness

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 25, 2020
In reply to @mamacita "@auntieoakley , @sirgalahad , and @colleenyoung ...@lioness, everyone...@gingerw, @johnbishop ,all of our Mayo Clinic family.... A..." + (show)
@mamacita

@auntieoakley , @sirgalahad , and @colleenyoung ...@lioness, everyone...@gingerw, @johnbishop ,all of our Mayo Clinic family....

A long shower and warm food in one's own home goes a long way towards getting back to normalcy, even if it is only for a little while.

Down here, you have to get to the hospital at the same time the doctors are finished seeing their patients, so you can catch them before they leave for their offices.

Today I was fortunate in that I met with four of her doctors. All of them responded to any questions I had and showed me kindness and respect.

I have been on autopilot, probably masking too much, but it is so important for the physicians to have a complete profile of their patient. Especially when the patient has multiple serious conditions such ad CHF, COPD, Lymphedema, Cellulitis, Diabetes, etc.

Simple things like finding clothes to wear tomorrow and asking the teen if we should make spaghetti for dinner tomorrow night, are helpful ways of grounding myself. Do I wear a little bit of the cologne she gave me for Christmas, or do I wear the Wal Mart special I really like?

Do I play songs on the piano, or do I listen to YouTube inspirational music? Sure, it's not rocket science. But it helps to ground me. Because when I enter those doors in ICU I have almost no control over what happens to my daughter.

I am washing a load of laundry, another bit of everyday life that speaks "normalcy." I close my eyes and wonder for a monent what tomorrow will bring. I dare not be so hopeful that I become unrealistic. It could all go south in the blink of an eye.

Praying that is not the case. Hoping for the best.
Grateful for you all here.

Mamacita Jane

Jump to this post

@mamacita I'm so glad that you were able to squeeze in some moments of normalcy! You do deserve it. You are right, that we don't know what the next moment will bring, but keep caring for yourself, we want you to stay well and grounded. We love and appreciate you, @mamacita!

@sirgalahad I so appreciate the helpful ideas you could provide to @mamacita, to help with her daughter's meds! You are a good friend to so many.

@gingerw Your kind words of encouragement are always appreciated!

REPLY
1 reply
Mamacita, Alumna Mentor | @mamacita | Feb 25, 2020

@sirgalahad, @lioness, @gingerw, and all my loving friends here. She still has the ventilator in, she is taking Xanex, to help with her anxiety, and she is lightly sedated. The lung doctor is optimistic and says there's no reason for us to be anything less than optimistic.

More later.
Love and light
Mamacita Jane

REPLY
2 replies
sirgalahad | @sirgalahad | Feb 25, 2020
In reply to @mamacita "@sirgalahad, @lioness, @gingerw, and all my loving friends here. She still has the ventilator in, she..." + (show)
@mamacita

@sirgalahad, @lioness, @gingerw, and all my loving friends here. She still has the ventilator in, she is taking Xanex, to help with her anxiety, and she is lightly sedated. The lung doctor is optimistic and says there's no reason for us to be anything less than optimistic.

More later.
Love and light
Mamacita Jane

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mamacita ask for a sputum culture and a mycoplasma bacterial culture and a pnuemococcius bacterial culture too

REPLY
1 reply
Mamacita, Alumna Mentor | @mamacita | Feb 25, 2020
In reply to @sirgalahad "mamacita ask for a sputum culture and a mycoplasma bacterial culture and a pnuemococcius bacterial culture..." + (show)
@sirgalahad

mamacita ask for a sputum culture and a mycoplasma bacterial culture and a pnuemococcius bacterial culture too

Jump to this post

@sirgalahad, they are doing all of that. Once again, you are on top of it!
Love and light,
Mamacita Jane

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