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

@mamacita Prayers coming your way hang in there . Do what you have to stay strong for your daughter then you can rest you,ll need it

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Thank you so much,@luoness….Yesterday was a much better day for her.

We never seem to get there when the doctor is there. But we talked with the nurse in charge a lot. She is pregnant and looks so tired. She is nice to us and answers our questions.

Housekeeping accidentally took up with the laundry a specially soft little afghan I had brought for her to be a comfort to her.

I told the nurse ir was not the end of the world, obviously, but that we really wanted it back. It was brought there for her comfort in a very difficult time. I hadn't even intended for it to stay there overnight. It was obviously not hospital issue. Wr hope it will be returned today.

When I get overwhelmed I fixate on something I can change. I have very little control over the quality of staff towards my daughter. But I can sure try to get that blanket back!!!

I am so tired. But not near as tired as I know my daughter is going to be. So I will run in here to see you all throughout the day to say "hi."

Thanks again so much for all your kind support!
Love and light,
Mamacita Jane

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@mamacita

Thank you so much,@luoness….Yesterday was a much better day for her.

We never seem to get there when the doctor is there. But we talked with the nurse in charge a lot. She is pregnant and looks so tired. She is nice to us and answers our questions.

Housekeeping accidentally took up with the laundry a specially soft little afghan I had brought for her to be a comfort to her.

I told the nurse ir was not the end of the world, obviously, but that we really wanted it back. It was brought there for her comfort in a very difficult time. I hadn't even intended for it to stay there overnight. It was obviously not hospital issue. Wr hope it will be returned today.

When I get overwhelmed I fixate on something I can change. I have very little control over the quality of staff towards my daughter. But I can sure try to get that blanket back!!!

I am so tired. But not near as tired as I know my daughter is going to be. So I will run in here to see you all throughout the day to say "hi."

Thanks again so much for all your kind support!
Love and light,
Mamacita Jane

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May you and your daughter feel blessed today, @mamacita. We are in your corner and I'm praying for you both (and also that you get the afghan back).

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@mamacita

Thank you so much,@luoness….Yesterday was a much better day for her.

We never seem to get there when the doctor is there. But we talked with the nurse in charge a lot. She is pregnant and looks so tired. She is nice to us and answers our questions.

Housekeeping accidentally took up with the laundry a specially soft little afghan I had brought for her to be a comfort to her.

I told the nurse ir was not the end of the world, obviously, but that we really wanted it back. It was brought there for her comfort in a very difficult time. I hadn't even intended for it to stay there overnight. It was obviously not hospital issue. Wr hope it will be returned today.

When I get overwhelmed I fixate on something I can change. I have very little control over the quality of staff towards my daughter. But I can sure try to get that blanket back!!!

I am so tired. But not near as tired as I know my daughter is going to be. So I will run in here to see you all throughout the day to say "hi."

Thanks again so much for all your kind support!
Love and light,
Mamacita Jane

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Being the person who is there always is certainly a mixed blessing isn’t it. I feel you now. I am sending a prayer up now for you and your daughter.

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@mamacita

Thank you so much,@luoness….Yesterday was a much better day for her.

We never seem to get there when the doctor is there. But we talked with the nurse in charge a lot. She is pregnant and looks so tired. She is nice to us and answers our questions.

Housekeeping accidentally took up with the laundry a specially soft little afghan I had brought for her to be a comfort to her.

I told the nurse ir was not the end of the world, obviously, but that we really wanted it back. It was brought there for her comfort in a very difficult time. I hadn't even intended for it to stay there overnight. It was obviously not hospital issue. Wr hope it will be returned today.

When I get overwhelmed I fixate on something I can change. I have very little control over the quality of staff towards my daughter. But I can sure try to get that blanket back!!!

I am so tired. But not near as tired as I know my daughter is going to be. So I will run in here to see you all throughout the day to say "hi."

Thanks again so much for all your kind support!
Love and light,
Mamacita Jane

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@mamacita I'm glad it was a better day for you both I hope you get your blanket back. When your child is hurt the Mother comes out When your both better you can get your rest ,well deserved

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thankyou Lisa Lucier I have been in touch with Mamamcitta since her daughter went into her local medical facility and was there thru the initial medical negligence and stupidity. Through Mamacita was guiding Mamacita for much better care and treatment by the doctors and . The doctors acted on my advice thru Mamacita and one hopes that things have stabilised although there is a very long road and her daughter has lymphedema and Pneumonia

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@sirgalahad So sorry to hear about her daughters problems . Bless them both . Tell her Im thinking of her and her daughter

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what Mamamcita does need is support from the hospital where her daughter is being treated in regards to the ongoing medical treatment of her daughter and advice and a good anti anxiety meds

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@sirgalahad

thankyou Lisa Lucier I have been in touch with Mamamcitta since her daughter went into her local medical facility and was there thru the initial medical negligence and stupidity. Through Mamacita was guiding Mamacita for much better care and treatment by the doctors and . The doctors acted on my advice thru Mamacita and one hopes that things have stabilised although there is a very long road and her daughter has lymphedema and Pneumonia

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@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

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@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

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recommendation of anti-anxiety meds that don't bring drowsiness for Mamcita daughter

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@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

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thankyou Ginger

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@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

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