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.

@gingerw

@mamacita Your dedication to your family remains, even if you are not right there. The medical team knows this "mama bear" lurks just around the corner ;)) Like @merpreb said, take time today to recharge, give that teen some love-with-a-hug, too.
Ginger

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and a huge brother bear lurking in Australia if they bloody stuff it up again

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@merpreb

Jane- Thank you. Very interesting. Does it work on all children? I have a nephew who I believe has been on the spectrum for many years but has not registered as such with tests. He's probably had more tests than I ever will, poor guy.

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@merry, I would be very hopeful that such a program of positive reinforcement would help just about any child. What they do first is an assessment to detetmine the things a child responds favorably to. Armed with that information and lots of dedication and patience, they slowly set about to gently shape the behavior. This is a case where speed is not warranted or desired. Relationship is where it's at. The child must be comfortable and feel safe, not threatened or shamed in any way.

I would think this focus would have a really good chance of working.

Love and light,
Mamacita Jane

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@mamacita

@merry, I would be very hopeful that such a program of positive reinforcement would help just about any child. What they do first is an assessment to detetmine the things a child responds favorably to. Armed with that information and lots of dedication and patience, they slowly set about to gently shape the behavior. This is a case where speed is not warranted or desired. Relationship is where it's at. The child must be comfortable and feel safe, not threatened or shamed in any way.

I would think this focus would have a really good chance of working.

Love and light,
Mamacita Jane

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@mamacita- Jane how are you holding up? Are you visiting today? ANy up-to-date news?

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@merpreb

@mamacita- Jane how are you holding up? Are you visiting today? ANy up-to-date news?

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@merry, Volunteer Mentor, I met two more of her doctors today. The kidney specialist said she was doing really well.The hospitalist was in as well, and had good things to say.

I had to take care of some business today. But I still went on over. Here they let us stay as long as its visiting hours.

They are weaning her off the ventilater over the next couple of days. They have reduced her pain meds and she responds to their requests.

We continue to be optimistic. So many people are praying for her and sending good thoughts and wishes.

Thank you for keeping in touch. I will try to keep up with posting as I have the opportunity. Driving there takes an hour, during rush hour. The hospital has wifi, so I take advantage of it frequently.

Love and light,
Mamacita Jane

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@mamacita

@merry, Volunteer Mentor, I met two more of her doctors today. The kidney specialist said she was doing really well.The hospitalist was in as well, and had good things to say.

I had to take care of some business today. But I still went on over. Here they let us stay as long as its visiting hours.

They are weaning her off the ventilater over the next couple of days. They have reduced her pain meds and she responds to their requests.

We continue to be optimistic. So many people are praying for her and sending good thoughts and wishes.

Thank you for keeping in touch. I will try to keep up with posting as I have the opportunity. Driving there takes an hour, during rush hour. The hospital has wifi, so I take advantage of it frequently.

Love and light,
Mamacita Jane

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@mamacita We're all pulling for you guys!
Ginger

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bear hugs dear miss jane all the best glad she is progressing well your fabulous daughter. I am not allowed to say her name on this page or the mayo clinic connect I do loves you. Finally to all in this group ginger and merry and the others thank you for making me feel ok as an autistic but unfortunately I have been censored again and I have reset my personal boundaries and self-respect for myself .what I expect to be treated as and the neurotypical people within this group do not understand and get autistic people especially male autistic. I and we do have different operating systems and how we have masked to survive in our lives and perceive and how we have been bullied and abused. To the auties, I have given Mamacita my email address and I am on Facebook if you wanna cross over and chat Huggies and blessed be. I am able to keep in contact with Mamacita with other online means. I no longer believe I can contribute or say anything without being edited criticised or micro-managed and for an autistic that is bloody rude. For the record, I have 2 undergraduate degrees biomedical science and theology , masters in medieval English history and a PhD in the role of the British raj ruling India

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@mamacita

@merry, Volunteer Mentor, I met two more of her doctors today. The kidney specialist said she was doing really well.The hospitalist was in as well, and had good things to say.

I had to take care of some business today. But I still went on over. Here they let us stay as long as its visiting hours.

They are weaning her off the ventilater over the next couple of days. They have reduced her pain meds and she responds to their requests.

We continue to be optimistic. So many people are praying for her and sending good thoughts and wishes.

Thank you for keeping in touch. I will try to keep up with posting as I have the opportunity. Driving there takes an hour, during rush hour. The hospital has wifi, so I take advantage of it frequently.

Love and light,
Mamacita Jane

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@mamacita- What positive news Jane! It sounds like you have some wonderful doctors working to help save your daughter. And she's responding! Hospitals are always at inconvenient places and times when you need them there's always traffic. But an hour isn't too bad. Too bad that there's not a train nearby. Have a great day today. xxoo

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@ginger and @colleenyoung ,
Well here we are, still in ICU. Her pneumonia is being treated, and everything else that was an issue is under control. So we are very, very grateful. It's not over yet. But we're getting there.

Now as for me, I am going to have to do a lot of self care this weekend. I have held everything in for the most part, and tried to be myself as I advocate for my daughter. Now is not the time for masking. I really dont care if I fit in here or not. I want everything possible done for her while she cannot speak for herself.

If I don't schedule some "me time" I will likely have a melt down. That is just a fact. I have had to be the strong one, due to circumstances beyond our control. Sirgalahad keeps telling me to watch funny movies, put lavendar oil in an infuser, and drink a hot cup of herb tea. No need to tell him I prefer Diet Dr.Pepper, my vanilla candles, and Netflix movies/Action/Adventure.

I may even attend a baby dedication tomorrow. I havent set foot in church in forever. Our whole family has been so sick, one after the other, the parishioners might think we are guests when we actually do show up!

As far as being sensitive, I am very sensitive right now. So far my battle of the mind has won over the dark thoughts and negative things thrown our way. I have calmed down about the mistakes that were made the first day. I believe I have a better understanding after speaking with the head nurse.

You know, I wish I wasnt so sensitive, sometimes. But it has made me be the person I am. God knew what He was doing when He made me a human sponge!

But I digress. Fun fact:When you've met a person with Autism, you've met one person with Autism!!!! We are not all Math whizzes. We don't all have superior, dog like hearing.....But I do. We all are not developmentaly delayed. Many of us are gifted, or just plain smart. Some can teach themselves foreign languages. Many graduate school with high honors. Some have dyslexia yet have genius level IQ's.

Did you know that the Israeli Army recruits Aspies for their Intelligence Division? Pattern recognition and all that.
Autism is not a death sentence. It is actually quite liberating.

Thanks again for all your support, everyone. I love you all.

Mamacita Jane

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@mamacita

@ginger and @colleenyoung ,
Well here we are, still in ICU. Her pneumonia is being treated, and everything else that was an issue is under control. So we are very, very grateful. It's not over yet. But we're getting there.

Now as for me, I am going to have to do a lot of self care this weekend. I have held everything in for the most part, and tried to be myself as I advocate for my daughter. Now is not the time for masking. I really dont care if I fit in here or not. I want everything possible done for her while she cannot speak for herself.

If I don't schedule some "me time" I will likely have a melt down. That is just a fact. I have had to be the strong one, due to circumstances beyond our control. Sirgalahad keeps telling me to watch funny movies, put lavendar oil in an infuser, and drink a hot cup of herb tea. No need to tell him I prefer Diet Dr.Pepper, my vanilla candles, and Netflix movies/Action/Adventure.

I may even attend a baby dedication tomorrow. I havent set foot in church in forever. Our whole family has been so sick, one after the other, the parishioners might think we are guests when we actually do show up!

As far as being sensitive, I am very sensitive right now. So far my battle of the mind has won over the dark thoughts and negative things thrown our way. I have calmed down about the mistakes that were made the first day. I believe I have a better understanding after speaking with the head nurse.

You know, I wish I wasnt so sensitive, sometimes. But it has made me be the person I am. God knew what He was doing when He made me a human sponge!

But I digress. Fun fact:When you've met a person with Autism, you've met one person with Autism!!!! We are not all Math whizzes. We don't all have superior, dog like hearing.....But I do. We all are not developmentaly delayed. Many of us are gifted, or just plain smart. Some can teach themselves foreign languages. Many graduate school with high honors. Some have dyslexia yet have genius level IQ's.

Did you know that the Israeli Army recruits Aspies for their Intelligence Division? Pattern recognition and all that.
Autism is not a death sentence. It is actually quite liberating.

Thanks again for all your support, everyone. I love you all.

Mamacita Jane

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@mamacita That is a very interesting fact about the military recruiting those on the Spectrum for special missions!

As for taking care of yourself this weekend, if there is a way to order that from us here at Mayo Connect, we are so ordering! You need time to recharge and regroup. You cannot be of service to yourself nor to your family without that, but I know you know that. I hope you know that I am saying this in a very loving way to you, sister to sister. It seems your life has been turned upside down and put through the wringer recently. You're right we feel so deeply and we are so sensitive; that's what makes us good at what we are good at.

Please let us know how we can support you through this. Your daughter and all are blessed to have you.
Ginger

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@gingerw

@mamacita That is a very interesting fact about the military recruiting those on the Spectrum for special missions!

As for taking care of yourself this weekend, if there is a way to order that from us here at Mayo Connect, we are so ordering! You need time to recharge and regroup. You cannot be of service to yourself nor to your family without that, but I know you know that. I hope you know that I am saying this in a very loving way to you, sister to sister. It seems your life has been turned upside down and put through the wringer recently. You're right we feel so deeply and we are so sensitive; that's what makes us good at what we are good at.

Please let us know how we can support you through this. Your daughter and all are blessed to have you.
Ginger

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@gingerw , I am placing an order for hot wings and pizza, popcorn and mustard pretzels, and all of you in my den, with us watching the latest new flick on Netflix.

Let's spend a virtual Saturday night together, just kicking off our shoes and relaxing. I can't think of anyone Id rather spend time with than you guys. For those of us who are Auties, we need these moments with special friends who accept us and understand us. Those who get it when we go quiet or have to leave early.

Have a great rest of the weekend. And I hope you enjoyed the imagery. I really enjoyed imagining there for a moment.

Love and light,
Mamacita Jane

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