what would be your ideal respite situation?

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skibum
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08 Aug 2019, 6:48 pm

I was in crisis at the hospital on Tuesday. I end up in crisis a lot and for the first time I was able to be closed in a dark room and left alone to just rest in a sensory controlled and sensory deprived environment. This was EXACTLY what I needed and I felt my brain and my body literally start a healing process within just a couple of hours. unfortunately I was only allowed to stay for four hours.

What would be the ideal crisis environment to help you guys recover when you are in crisis?


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08 Aug 2019, 7:30 pm

My yard is mostly a flower garden during the growing season.



IsabellaLinton
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08 Aug 2019, 7:37 pm

I would need exactly what you described, skibum. Total sensory deprivation with darkness, no noise or smell, and no sensation except my chosen stims. I'm glad you had that opportunity to decompress.


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skibum
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08 Aug 2019, 7:40 pm

BTDT wrote:
My yard is mostly a flower garden during the growing season.

That sounds wonderful. I would love that especially if you have a stream or a pond as well.:D


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08 Aug 2019, 7:45 pm

IsabellaLinton wrote:
I would need exactly what you described, skibum. Total sensory deprivation with darkness, no noise or smell, and no sensation except my chosen stims. I'm glad you had that opportunity to decompress.
Me too. It made such a difference. You and I are so alike, I love that.

I have been advocating and pushing for legislation to provide that sort of respite for HFAs. The kind that we we really need like flower gardens and dark sensory controlled rooms. You can't imagine how hard it is to convince the people in charge to provide these simple inexpensive solutions and to provide funding for us to use them. There is plenty of finding and plenty of respite for caregivers to dump their loved ones into so that they can get a break. And I understand the need and importance of that and I am not knocking it at all, I actually greatly support that. But on the other hand, those of us who live like I do, and many of you are in the same boat, have a great need as well and the respite we need could make the difference in whether some of us live or die. But for some reason, no one thinks that it is important.


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08 Aug 2019, 7:47 pm

I'm glad you got a chance to have the quiet and dark you needed. When I am super stressed, I just crawl into bed and sleep. But if it is just sort of stressed, being outside in the woods and swamp are healing to me.


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IsabellaLinton
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08 Aug 2019, 7:58 pm

skibum wrote:
IsabellaLinton wrote:
I would need exactly what you described, skibum. Total sensory deprivation with darkness, no noise or smell, and no sensation except my chosen stims. I'm glad you had that opportunity to decompress.
Me too. It made such a difference. You and I are so alike, I love that.

I have been advocating and pushing for legislation to provide that sort of respite for HFAs. The kind that we we really need like flower gardens and dark sensory controlled rooms. You can't imagine how hard it is to convince the people in charge to provide these simple inexpensive solutions and to provide funding for us to use them. There is plenty of finding and plenty of respite for caregivers to dump their loved ones into so that they can get a break. And I understand the need and importance of that and I am not knocking it at all, I actually greatly support that. But on the other hand, those of us who live like I do, and many of you are in the same boat, have a great need as well and the respite we need could make the difference in whether some of us live or die. But for some reason, no one thinks that it is important.


You're a champion for us all, skibum.

One of my friends was told by a therapist that they could overcome their sensory issues with cognitive training. (LMAO). Obviously this is ridiculous. I just wondered if you have any good links or articles to say exactly what you wrote, above!


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08 Aug 2019, 7:59 pm

Dark room, weighted blanket surrounding me, crash pad to lay on, left alone.



skibum
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08 Aug 2019, 8:00 pm

Thank you Blazing star I LOVE being out in nature as well. And if I can get on my bike on the rail trial or on a baby beginner mountain bike trail, I am a baby beginner mountain biker, or in my kayak, or hiking in the nature park, or with my friend's horses, visiting with taxidermy, or best of all, skiing the slopes on a day when the mountain is empty, I relish that. Those things are so therapeutic for me. I wish I could be safe in my own bed but I am never really safe there because there are so many people who play their stereos loudly in my area or who hang out on their porches and scream at each other even though the are sitting right next to each other or who play basketball in the street. I never know when I will have massive meltdowns or go into sensory overload shock when I try to rest in my own home.

When I am so critically neurologically assaulted and bombarded and overwhelmed, which is happening much more frequently now, I lose the ability to do the most basic things literally like breathing and walking and I have to go to a sensory controlled environment so that I can recover some of these functions. Otherwise I could have some very serious consequences.


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08 Aug 2019, 8:01 pm

livingwithautism wrote:
Dark room, weighted blanket surrounding me, crash pad to lay on, left alone.

I LOVE my weighted blanket!


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IsabellaLinton
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08 Aug 2019, 8:01 pm

livingwithautism wrote:
Dark room, weighted blanket surrounding me, crash pad to lay on, left alone.


Yes. This sounds perfect.


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08 Aug 2019, 8:03 pm

IsabellaLinton wrote:
skibum wrote:
IsabellaLinton wrote:
I would need exactly what you described, skibum. Total sensory deprivation with darkness, no noise or smell, and no sensation except my chosen stims. I'm glad you had that opportunity to decompress.
Me too. It made such a difference. You and I are so alike, I love that.

I have been advocating and pushing for legislation to provide that sort of respite for HFAs. The kind that we we really need like flower gardens and dark sensory controlled rooms. You can't imagine how hard it is to convince the people in charge to provide these simple inexpensive solutions and to provide funding for us to use them. There is plenty of finding and plenty of respite for caregivers to dump their loved ones into so that they can get a break. And I understand the need and importance of that and I am not knocking it at all, I actually greatly support that. But on the other hand, those of us who live like I do, and many of you are in the same boat, have a great need as well and the respite we need could make the difference in whether some of us live or die. But for some reason, no one thinks that it is important.


You're a champion for us all, skibum.

One of my friends was told by a therapist that they could overcome their sensory issues with cognitive training. (LMAO). Obviously this is ridiculous. I just wondered if you have any good links or articles to say exactly what you wrote, above!
Thank you so much Isabella.
Actually sensory integration therapy does work quite well but only if your sensory sensitivity is trauma based. Mine is not, I just have way too many sensory neurons so no therapy of that sort has ever even made a dent for me. But there are many people whose sensory processing disorder is trauma based and they can overcome their sensory issues with this kind of therapy and it can work very well for them.

I wish we could find articles from our perspective but I think we will have to write them. There are plenty supporting the success of sensory integration therapy but it does not apply to us.


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IsabellaLinton
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08 Aug 2019, 8:07 pm

skibum wrote:
IsabellaLinton wrote:
skibum wrote:
IsabellaLinton wrote:
I would need exactly what you described, skibum. Total sensory deprivation with darkness, no noise or smell, and no sensation except my chosen stims. I'm glad you had that opportunity to decompress.
Me too. It made such a difference. You and I are so alike, I love that.

I have been advocating and pushing for legislation to provide that sort of respite for HFAs. The kind that we we really need like flower gardens and dark sensory controlled rooms. You can't imagine how hard it is to convince the people in charge to provide these simple inexpensive solutions and to provide funding for us to use them. There is plenty of finding and plenty of respite for caregivers to dump their loved ones into so that they can get a break. And I understand the need and importance of that and I am not knocking it at all, I actually greatly support that. But on the other hand, those of us who live like I do, and many of you are in the same boat, have a great need as well and the respite we need could make the difference in whether some of us live or die. But for some reason, no one thinks that it is important.


You're a champion for us all, skibum.

One of my friends was told by a therapist that they could overcome their sensory issues with cognitive training. (LMAO). Obviously this is ridiculous. I just wondered if you have any good links or articles to say exactly what you wrote, above!
Thank you so much Isabella.
Actually sensory integration therapy does work quite well but only if your sensory sensitivity is trauma based. Mine is not, I just have way too many sensory neurons so no therapy of that sort has ever even made a dent for me. But there are many people whose sensory processing disorder is trauma based and they can overcome their sensory issues with this kind of therapy and it can work very well for them.


Thanks! I'll pass that along but their sensitivity is neurological, and a result of autism as opposed to trauma. The therapist is one of those people who thinks all autistic people can master their autism by thoughts alone.


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skibum
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08 Aug 2019, 8:15 pm

Tell your friend to get a new therapist. S/he has to get away from that person. That kind of therapist will destroy him/her.


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08 Aug 2019, 11:38 pm

Sure. Dim lights, warm... Or outside, with the sunset's sun rays and cool breeze -- alone. With tools and materials or a pen and paper somewhere, or neither.


But that won't be enough as a best 'ideal'.
My best 'ideal' would also mean no annoying bodily reactions to distract myself from any respite. External accommodations won't be enough even if it's so easy to provide.


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08 Aug 2019, 11:42 pm

Dark room
Ear plugs
Low Hz isochronic music
Pillow under my knee
Heavy pillow on my chest

All after 20 to 36 lap swimming lengths and a shower. 8)


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