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

@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

REPLY
@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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@mamacita

@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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@mamacita Yes ma'am, I certainly did enjoy the imagery. I promise I won't fight you for whatever movie is going to be put on Netflix. Just the sheer enjoyment of having time in your company will be plenty. I hope you don't mind my kitter-butt tagging along and jumping up on my lap to take a snooze on a blanket! She's really good company and I can always turn to her when I am stressed out. We had a sudden rain and snow shower storm this afternoon and the temperature dropped 15° very quickly, so I'm looking for a nice cozy Den like you're offering for this Saturday evening. Resting quietly and talking things over sounds like just the ticket for both of us, and all of those who want to join in.

I hope that you have the opportunity to get some good rest this weekend. And of course I'll be looking forward to any updates you can give us.
Hugs to you,
Ginger

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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

Jump to this post

@mamacita,@gingerw– I'm so glad that you have stated this. From the time that my youngest nephew was a young lad most of my family were aware that he had behavioral problems. As he got older, less sociable and in his own world most of us in the family suspected that he was within the Autistic Spectrum. However, none of his doctors ever tested him for this until this year. He's in his middle 30's! The poor kid had every possible personality test and anything else his many, many doctors could think of but not for Autism.
Would you describe what the tests are? Are there blood tests involved?

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@mamacita

@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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@mamacita– I must have had too many pretzels! But I feel very warm with my memories of last night! And the beer was terrific! This year I just started having some instead of wine or Whiskey. Thank you for inviting all of us to join in part of your "self-care" weekend! My house next time!

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@merpreb

@mamacita,@gingerw– I'm so glad that you have stated this. From the time that my youngest nephew was a young lad most of my family were aware that he had behavioral problems. As he got older, less sociable and in his own world most of us in the family suspected that he was within the Autistic Spectrum. However, none of his doctors ever tested him for this until this year. He's in his middle 30's! The poor kid had every possible personality test and anything else his many, many doctors could think of but not for Autism.
Would you describe what the tests are? Are there blood tests involved?

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@merpreb I can only speak to my experience, as I was diagnosed as an adult, about 7 years ago. The "signs" were pointing towards autism for many decades, but as @mamacita says "If you meet one person with autism, well, you've met one person with autism." My diagnosis was a detailed clinical history, and psychological exam by a professional specializing in autism and behavioral discrepancies. For me, there were no blood tests involved.
Ginger

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@merpreb

@mamacita– I must have had too many pretzels! But I feel very warm with my memories of last night! And the beer was terrific! This year I just started having some instead of wine or Whiskey. Thank you for inviting all of us to join in part of your "self-care" weekend! My house next time!

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@merpreb, I hope you enjoyed your Samuel Adams beer because that is the only beer I would ever even have a sip of. Now, wine, that is a whole nuther matter. My mother-in-law was French, and she insisted on serving wine with her meals at her home. So, when she would come to our home for a specisl holiday meal, we got whatever she wanted. Usually a red wine. Not too sweet.

In answer to your question about testing for a diagnosis of Autism, as far as I know there are no blood tests that are really helpful in making that diagnosis. I am at the hospital, and without my "textbooks" on the subject. Sometimes doctors test anyway, hoping to fill out the profile a little bit, to make an accurate diagnosis. Sometimes co-existing conditions rear their ugly heads in such a way that leads the doctors to suspect Autism.

Many little people have sleep disorders, gastrointestinal issues such as IBS, IBD, allergies, anxiety, depression, and many more. Hearing tests are usually given to very small children, for example, when the parents complain that little Tommy no longer responds when his name is called. My little Grandson stopped talking. And he would not respond to having his name called. His hearing was checked, and it was perfect.

He began having problems in nursery school. He had difficulty following instructions. When it was explained to him why he should not do a certain thing, he would go back and do it anyway. Then he was lining up his toys, every single day. He would be lost in his own thoughts, so often, it was scary.

Infants and toddlers have developmental milestones that are generally reached on an average, about the same time. When the time span is too broad, doctors begin to suspect developmental issues or a Spectrum disorder. Frequently the child will only eat certain foods.

We experienced all of the above wirh him. I personally experienced that and more as a child. But back then, in rhe fifties, no one suspected a thing if the child masked well. I have always masked until the past few years. Professionals I have dealt with say they woukd never have guessed I was on rhe Spectrum.

To be continued….

Love and light,
Mamacita Jane

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