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[tagÂûght] Acceptance, Love, and Self-care: #AutismPositivity2015

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It’s early morning April 30th as I’m starting to write this post, which is highly ironic, as I should be sleeping right now. Unfortunately, houses in St. John’s don’t seem to have soundproofing, and the housemate whose bedroom is next to mine is talking on the phone.

But aside from that, this topic is more than just a positive one, it’s a pertinent one for me this year. (And likely to be a long post, with many examples.)

Read on for the actual positivity!

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Always remember… from an Autistic Woman to all Autistic Persons Worldwide #AutismPositivity2015

By Sarah E. Nelson

You are loved and you are a great person. Don’t let anybody or anything tell you otherwise. They have no right to make you feel inferior, they’re the ones who have a problem. Their fear is something that should push you to keep on truckin’. Keep on keeping on!

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An interview (sort of) with MissG, an Autistic 7 year old… #AutismPositivity2015

By Michelle Sutton

Do you think it is important to look after yourself?  
Yes

Why?
I’m not answering

Can you tell me some ways you look after yourself? 
Ugh…. I’m not answering your questions. 

Are you feeling stressed right now? 
mmm hmmm

So, is not answering my questions a way of looking after yourself because you feel stressed?
mmmmmm

Is it ok if I just write down some things I know you do to look after yourself, and put that in the blog?
yeah

For the record, MissG had agreed to answer some questions for this article when I asked her yesterday, but when it came to doing it today didn’t want to. She is a bit out of sorts lately, we’ve had a really busy schedule for a few weeks, she is tired, overwhelmed and stressed.  I’m glad she agreed to let me share some things about how she looks after herself, though, because it is something we focus on a lot in our house and she has some great strategies! Everything I have written below I have her permission to share.

#AutismPositivity2015
Caring for herself by not talking

MissG does speak to communicate. Most of the time. Sometimes she refuses, as you saw above. She is learning to recognise when conversation, and the associated mental processing energy, is too much for her. Unless it is an issue of safety for some reason, we do not discourage her from retreating. As she gets older we will explore whether typing to communicate when speech is difficult is an alternative for her. Right now she finds writing very difficult, so sometimes we use the feelings book she made herself.#AutismPositivity2015
Caring for herself by stimming

MissG stims by licking her lips and the skin around her mouth when she is stressed. We have never discouraged her. Sometimes however her stimming can cause damage to her skin, so we have talked about looking after her skin. MissG initially chose to do that by applying a soothing barrier cream to her skin when it felt sore. More recently she expressed a desire not to lick all the time because people had started to comment on her skin looking dry and red. She had her own suggestion for a replacement behaviour. She said,”When I don’t lick I feel bitey. I know I can’t bite other people, so I can bite my finger. But that can hurt, so can you get me some gum to chew?” And a few days later, on the way to the hair dresser, “Can we get some mints? I will need to sit still, but it will be hard because she will touch my head. Some mints will help me feel better.” Gum and mints are now always in my bag, along with the cream she uses. MissG still stims by licking, but now there are alternatives that  she has chosen when she wants to use them.

#AutismPositivity2015
Caring for herself by getting help with sleeping

MissG does not sleep well. She has a lot of trouble getting to sleep and usually wakes at least twice a night. Not sleeping well adds to stress. When I asked the Paediatrician about this, he called it “Sleep Initiation Disorder” (meh!) and said some Melatonin might help. MissG’s sleep disturbances are only really a problem when external things impose their routines on her, for example when she needs to be at swimming lessons earlier in the morning than she would usually wake, or if we have an appointment to keep, but because she is homeschooled she can usually keep her own sleep schedule. I have noticed though that after a few months of going to sleep “late” and waking “late” that MissG begins to feel stressed and overwhelmed more frequently. So, we have talked about it, and come up with a system that works well for her. Usually MissG chooses when to take Melatonin to help initiate sleep. She will usually choose to take it 2 or 3 nights a week. If she or I notice that she is going to sleep very late regularly, or if she is experiencing overwhelm more often than usual and we can’t see any other obvious reason for it, she will take Melatonin every night for a 2 to 3 month period to help her body reset its circadian rhythms. Generally about 2 weeks into this period of nightly use both she and I can see she is feeling better overall. After about 6 weeks I notice MissG begins to tell me she doesn’t want to take it anymore, because she feels she sleeps differently with the Melatonin and once she is not overtired all the time that feeling is not nice, so we negotiate how much longer she needs it to complete the reset period. She is never forced to take it.

#AutismPositivity2015
Caring for herself by being in control of decisions about her body.

This is the key. I hope you noticed it in all the above points.

“she refuses” “we do not discourage” “her own suggestion” “alternatives that  she has chosen” “come up with a system that works well for her” “is never forced”

MissG’s body is hers and hers alone. She makes the choices about her self care. She is in control. So, while this blog post has not turned out anywhere near the way I had planned, I am not concerned at all. My role as a parent is to present options for her consideration when her 7 years do not give her the experience to know what all the possibilities are. My role is not to impose my desires on her. I guide, I recommend, I support, but I do not choose. This is so important in helping MissG become her own best advocate.

Having control over the choices made in the care of her own body is the most important thing for MissG to become confident in as she grows up. She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her.

image: An expanse of grass with large leafed plants in the background at the top of the image. In the top right corner is a fair skinned child wearing black pants and a dark pink shirt, who is running toward the camera and flapping their hands. In the top left corner are the words “fb / amazing adventures autism”. At the bottom of the image are the words “She will be a disabled adult, and my advocating for acceptance, love and self-care, with her right to be in control and make her own choices, is one of the most powerful gifts I can give her.  Michelle Sutton”

Original post: http://amazingadventuresautism.blogspot.com.au/2015/05/amazing-adventures-acceptance-love-and.html

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“He is sitting in a Chair” A Description of Friendship – Expressions of PosAutivity: #AutismPositivity2014

By Brent White

I observed an interesting encounter yesterday between ACAT/ACT teachers and our participant Rafael. Rafael and his group were working with a relationship curriculum and discussing friendships. The teachers ask Rafael who his friends were. He thought about it for a while and said that Ihe was his friend. Rafael and Ihe have been forming a lovely bond over the last few months. The teachers next ask Rafael why Ihe was his friend. This question took longer to answer, but after careful thought, Rafael said, “He is sitting in a chair.” It is easy to take Rafael’s answer literally; Ihe was sitting next to him at the time, but I understood the intention differently. Their friendship is expressed by proximity, but not by words. They choose to sit together all the time on BART, at lunch or when working in groups as they were yesterday.

It got me thinking about how important it is for me when someone chooses to sit next to me in social situations. Like many autistic folks, social pragmatics are an issue for me. It isn’t that I don’t want to be friendly or meet new people, nor is it simply an issue with shyness or awkwardness. The issue for me is walking up to someone [stranger or not] and striking up a conversation makes no sense. I have no access to how it works. I know intellectually how conversation, particularly small talk should work, but I cannot conceptualize the process in in my mind. It is blank. Add to this, difficulties with understanding spoken language or understanding the flow and mechanics of conversation in general. Social situations, especially as gateways to forming friendships are most often frustrating and stressful.

This is life-long for me, from my childhood until now at age 55; it has never changed. While I’ve learned adaptations along the way, the nuts and bolts of social interactions have remained just out of my reach, a confounding mystery. It can be lonely and isolating watching social interaction happening all around me and feeling shut out, not because I’m not invited, but because I can’t internally access it, at least not on my own. This is why someone choosing to sit next to me and attempt to strike up a conversation is so important. It doesn’t always work, but it works sometimes. Someone taking the time and looking past my conversational awkwardness can be a blessing. While I don’t have many friends, my friendships have often started when someone chose to sit next to me.

When Rafael said of Ihe’s friendship, “He is sitting in a chair”, I heard something beautiful and profound. I heard that Ihe is kind and sweet and takes the time to sit with Rafael. I heard that Ihe is willing to bridge whatever conversational gap might exist, and importantly, that friendships can exist on a non-verbal level and succeed. In fact their connection runs both ways, as Rafael also chooses to sit with Ihe as well. The friendship between Ihe and Rafael is forged through the presence of the other and language is not necessary. “He is sitting in a chair” as a description of why someone is a friend, is a deep and endearing answer. For me, it is one of the most interesting and understandable I have ever heard.

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Rafael and Ihe riding the BART train

Original Post from ACAT: Ala Costa Adult Transition Program :http://alacosta-acat.org/2014/03/26/he-is-sitting-in-a-chair-a-description-of-friendship/

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From DUSYA: The difference between normal ( NT”S ) and autistic people

The DIFFERENCE between NORMAL ( NT”S ) and AUTISTIC people

I have been observing Normal people and how they show empathy and emotions in general

and I have been observing how Autistics show empathy and emotions .

I have also observed how I myself sense empathy and emotions in general !

I admit that I used to be VERY confused about my OWN feelings and although I am getting to know myself better or maybe I should say ; UNDERSTAND myself better , I think I was observing others and their emotions to better understand my own ( This probably sounds STRANGE ?!) .

From conversations that I have had with a variety of people , I learned that if you do NOT understand your emotions then it is not ONLY OK but also NORMAL and that EVERYBODY goes through that cycle !

I want to talk about an experience that I had a few months ago and I will try to make it short !

I use to go to a group where ONLY women would be present and these women were normal and I did my BEST to connect with them although I realize that there were only two women with whom I could relate to a certain degree because these women viewed the world similar to me meaning they had similar views about work , Role of women , Prejudice etc…

Once I got an e-mail from a woman who was not part of the group I went to but she was still part of our group ( If so to speak) and in the e-mail was a message about a little girl who was in the hospital due to a car accident !

Her parents were OK but the girl was in a comma !

The e-mail was sent to all of the women in the group and I offered to send a GET WELL card .

I send the card to the neighbor and after a week we all got the e-mail that the little girl died !

I was DEVASTATED !

I was so sad that I felt guilty and thought I maybe killed the little girl ( I get irrational when I am depressed or upset !) .

A few weeks later I send an e-mail to one of my friends from the group and asked about the little girl and all she said was : Yeah , It is sad .

My thoughts to this respond was ; Is that ALL she can say to this tragedy ?! .

A month later , I met the woman who send the e-mail about the little girl and I wanted to have a conversation with her and I thought we could share with each other how we felt about this LOSS although we were not related to this child , But again the only respond I got from this woman was : Yes, It is awful isn”t it ? and then she just left me with an opened mouth ( I was shocked ) .

So after this experience I was trying to understand WHY or what is the difference between US meaning why is it that normal people do not seem to to grieve or feel sadness and why was I CRYING after I heard of the girls death ? ! .

It is impossible to say that normal people do not have emotions and I will NEVER say that anyway , But I was indeed puzzled !

Although I am STILL learning to understand emotions and although I know that there have been MILLIONS of books written on that topic ( Kind of ironic) , I have made though an interesting observation ( A LOT of people who know me fairly well say that I like watching people )

Normal people seem to show their empathy and emotions ( Like sadness ) by just saying ; That is SAD .

When Autistics feel emotions or empathy , Autistics ACTUALLY SHOW emotions by crying or having a temper tantrum or meltdown or being or just go MUTE for DAYS !

Today I also found out that if a normal person feels sadness and goes MUTE or cries then these people are sent to a PSYCHIATRIST , But if Autistics cry or go MUTE then somebody says : OH ! That person is AUTISTIC , him or her ALONE !

It seems that in our culture , If you feel like crying or screaming then you get sent to a psychiatrist then something is MENTALLY WRONG with you !

People have FORGOTTEN that crying , Feeling depressed , being sad is a part of BEING HUMAN

and I would say that if you do NOT have all the above emotions , THEN you DEFFINETELY need a psychiatrist !

Thank you for reading

DUSYA

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Savvy Advocate Mom Celebrates 1000 “Ausome” Things – Autistic Kids… #AutismPositivity2013

…have a great talent for detail.
image by Sensi

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This post is a part of an ongoing series of Autistic Kids… the original idea came from Jim on Just a ‘Lil Blog about Googling autism, autistic kids and the auto-fill results. My series is to help change those auto-fill responses/results.

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This post was originally published by Savvy Advocate Mom at http://special-education-advocacy-support.blogspot.com/2013/04/savvy-advocate-mom-celebrates-1000.html, and is reprinted here with permission from the author.

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