Tag Archives: Autism Postivity Flashblog

Side to Side #AutismPositivity2015

By Erin Zerba

Side to Side

I sit here with my eyes closed, unable to speak.

I wrap my arms around myself and rock.

Side to side, I rock, like I used to do to soothe my children when they were small.

Side to side, I rock, trying to soothe myself.

Side to side, I rock, trying not to cry.

Side to side, I rock, trying to envision a warm, comfortable place.

Side to side, I rock, missing the strong arms that once made me feel safe.

Side to side, I rock, my arms wrapped around me are not enough, the tears are coming anyway.

I stop the rocking; I can’t hold it in anymore.

I cover my face, I am falling apart, but no one notices it.

My arms feel heavy, my body is shutting down.

It is just too much, too much emotional, mental, physical, and sensory stress.

My son often asks me, “How do you do all that you do?”

I tell him I don’t know, I just keep going, because I have to.

I just keep moving forward reminding myself that tomorrow is a new day.

Tomorrow I can try again.

image

Tomorrow … it will be better.

There will be a tomorrow when I will have strong arms wrapped around me again to help me feel safe.

Not the same strong arms of the past, but better arms attached to someone different.

There will be a tomorrow when I can come home and not cry from overload and lack of “spoons”.

I will not have so many jobs or homework to worry about.

But, those tomorrows aren’t here yet.

So, I will sit here with my eyes closed, unable to speak.

I wrap my arms around myself again and rock.

Side to side, I rock, to soothe myself.

Original Post: http://geekysciencemom.tumblr.com/post/118838334257/side-to-side

(Image found at tonygentilcore.com)

 

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Tales From An Autism Family: Acceptance, Love, and Self-care #AutismPositivity15

By Mandy Klein

This year’s Autism Positivity Flashblog has changed dates to May, which gives autistic people a chance to recover from the April ‘Autism Awareness’ negativity. The theme is Acceptance, Love, and self-care.

There is so much unnecessary stigma surrounding autism. Some people/organizations call it a thief that steals your child, except that a child is born autistic and they grow up to be autistic adults. We are everywhere, whether diagnosed or not yet diagnosed. Many autism organizations only talk about and provide services to kids. Autism does not disappear at 18 years of age. Adults of all ages need services as well. We need support and acceptance at all ages and stages of our lives. Autistics of all ages exist. We may live with family, in group homes, on our own-who knew! (Sarcasm), or with partners or friends but we are out there. Some of us are in your workplace, recreational activities, and volunteer organizations.

Do you really know what autism ‘looks’ like? Is there a ‘look’. We are all so different and alike just as allistic people are different and alike. Different skills and interests. We are all human; different not less. Diversity is good and necessary.

Many of us are ‘out’ autistics and most of us don’t see autism as something horrible. There are some areas where we struggle more than allistic people but that just means we need more support in those areas. If we have loving supportive families especially as children, we can go far. We need full inclusion in society. Accepting us means including us and supporting us so we might be included. Some autistics may need a high level of support to be included while some need little support. Because most of us are not wealthy, we don’t get the level of support that we need. The government provides me with a very small amount of money with which I have to choose whether to use it for support or recreation. I choose the recreation which is my horseback riding because it is calming and good for my sensory needs. The money I get doesn’t cover the whole amount and there is definitely none left over for support in the community. It is a hard choice to make and one that I shouldn’t have to make.  It is something though.

I guess my horseback riding is part of my self-care. It gets me out of the house and it is great for sensory input. I don’t practice as much self-care as I should. I constantly push myself. It is hard to take time for yourself when you have a family and pets. It is hard to ask for help and support when you know other people are busy and there is very little in government provided service. I have severe anxiety partly because of lack of support. Some of the things I try to do to help myself include trying to avoid certain circumstances that cause sensory overload and anxiety- things like talking on the phone and going out. I know I also need to ask for help more.  I know there is someone out there somewhere who can help me when needed.  I just have to trust that they will.

Would I trade in my autism if I had the chance? Definitely not! It makes me who I am. It is part of me. I would be a completely different person without it. Autism is neither good nor bad, it just is. It is a part of me as a human being, just as not being is autistic is part of allistic people as human beings.

Photo of light skinned woman wearing a riding helmet while riding a grey horse.

Photo of light skinned woman wearing a riding helmet while riding a grey horse.

Original Post: http://talesfromanautismfamily.blogspot.ca/2015/05/acceptance-love-and-self-care.html

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Amy Sequenzia on Acceptance, Love, Self-Care: #AutismPositivity2015

By Amy Sequenzia

AutismPositivity2015

Autism Positivity is coming out of April stronger.
Tired
A little frustrated
Spoonless.

But stronger.

Autism Positivity is rejecting blue lights, casting a red shadow and obscuring the blue puzzle pieces of hate.

We continue our #WalkInRed call to action, we are joined by accepting friends, old and new.

As Elvis Costello has been singing for decades, even the Angels want to wear the red shoes.

Acceptance, Love (and the Angels wearing red shoes) = Positivity

Autism Positivity is reclaiming words used to devalue us, and giving them their true meaning.

Defiant: standing for what we believe in and for whom we are, against the normalization imposed on us.

Non-compliant: refusing to accept the low expectations imposed on us, refusing to “obey”, or to “behave” according to what is arbitrarily defined as “normal” and “acceptable”.

Withdrawn: not isolated, but knowing when to retreat for self-preservation and self-care

Obsessed: finding joy in discoveries beyond the ordinary.

We reclaim those words and we exercise our self-determination.
We are defiant and non-compliant because we stand for our humanity.

We take care of our need for self-regulation and we retreat, even if the majority insists that socializing means being surrounded by people all the time, exchanging (sometimes pointless) words, acting “normal”.

We defy the usual narrative that talks about us without us, and we don’t back down. We demand to be heard. We move forward kicking open the doors that are being constantly being slammed in our faces.

Autism Positivity can come with tears, but it leads to pride.

I defy, I don’t comply
I obsess about my rights
I take care of myself.

I am also radical
Rebellious
I speak my mind

Autism Positivity does not ride a unicorn
Autism Positivity can come with pain and scars.
Autism Positivity is a lot like a battle

But we determine the goals
We define the priorities

Autism Positivity is self-discovery
It is our path.

Autism Positivity is Acceptance, Love and Self-Care

Original Post: http://ollibean.com/2015/05/15/ollibean-acceptance-love-self-care-autismpositivity2015/

 

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Acceptance, Love, and Self-Care: A Work in Progress #AutismPositivity2015

By Renee Salas

Love and Acceptance. Self-Care? Well… I’m Working On It

When we began planning this year’s flash blog I was happy to see that love and acceptance were topping the list, and rightly so. Then the idea of self-care was added and I almost didn’t contribute. How could I? I don’t know the first thing about self-care. I don’t think I even heard the term until I joined social media a little over two years ago. I didn’t understand how the concept of worrying about me would benefit advocacy. Self-care sounded like going to the spa for facials and massages, or maybe having your nails done; long vacations, breakfast in bed, and someone to clean my house. It sounded like selfish pampering to me, not that I knew the definition, as I’d never actually sought one.

Love and Acceptance, I could write on. Self-care?

Not so much. Not at all, really.

Four Decades Sans Self-Care

I have always ‘taken care’ of what needed to be done. I have always cared for others, something that has rarely been reciprocated, and to this end I have never practiced self-care. I would say I always came in last place but that would be inaccurate, as I don’t think I ever placed, a belief that has been supported in many of my relationships. Apart from my Mom, and as we got older, my sister, I’ve had very few people truly care for my well-being. No one to look after me emotionally, or to lean on when I felt I couldn’t take anymore, although me not being able to take anymore has never been an option. I have always been expected to handle my needs and everyone else’s. It’s exhausting. I’ve wanted to break so many times I’ve lost count, but breaking is also something I’ve never been allowed the luxury of because everyone’s expectations, mine included, were that I had to hold it together.

I thought self-care was something people selfishly indulged in by putting themselves before everyone else. How could they, I would think to myself. If I took 30 minutes for lunch I felt guilty because I knew someone somewhere in this great big world would be let down by my egocentric actions. I’m supposed to be advocating, fighting for disability rights and social justice. How on Earth was I supposed to push aside the needs of so many (my children included) for… Me?

Unthinkable. Impossible.

The Love in Self-Care

And then some very good friends that I’m in an online advocacy group with began talking about self-care. And for the first time, I started listening and began learning what self-care really was. At different times I witnessed each one of these amazing human beings leave our group for self-care. I read as everyone in the group told them that was the best thing to do, and that they had to take care of themselves first before they could take care of others… and they meant it. And I agreed with them. You see I had grown to love these friends, and care very deeply for them. I began to worry they were not taking proper care of themselves and I wanted them to be well. I needed them to be well because if they weren’t, then they were added to my list of loved ones to worry over. And that, my friends, has become a very long list.

So why couldn’t I care for myself?

In short, I didn’t believe I’d done anything to earn it. They deserved the break. They worked tirelessly day in and day and I know this because I was there with them. Frankly, I was in awe of each and every one of them and aspired to be as great as they were. I felt that one day, when I worked as hard as they did, then I, too, would deserve respite. But until I did, I would have to keep working to prove to myself that I deserved the care.

And Then…

Many of you may have noticed that my blog posts over the last year have dwindled down to one or two a month, and that my Twitter presence is down to almost nothing with Facebook being a close second. See, while I was so busy shunning my ludicrous idea of self-care, I was breaking down. Most of you don’t know that I was working with advocates in the U.S. and all over the world and sleeping about 3 hours a night, answering emails and private messages from folks who needed resources, or many times just being that person there to listen. And if you read Stubborn Love, you knew that I was wrestling with conflicting emotions brought on by my estranged father becoming ill and eventually dying. But what most of you didn’t know was that my non-speaking son was in yet another school where they would not focus on academics or AAC as I had stressed over and again, so I pulled him out and began homeschooling him during the day. Even fewer of you knew that my youngest daughter, who has several learning disabilities, had to be taken out of school because her anxiety was so high she was no longer retaining information, and I began homeschooling her as well. I also hadn’t shared that my oldest daughter had to be moved to a new school because her depression and anger over not having educational or social needs met had gotten so bad she was barely talking at school and was spending every waking moment in her room refusing contact with anyone but me. And none of you knew that I was battling stress, depression, and an eating disorder, which had become so bad that at 5’7”,122 pounds I was trying desperately to lose weight. Those are the things I can share with you now, but there are other things, too, and they will come in time.

None of this, in my mind, deserved self-care.

These things are a part of life I would tell myself. Everyone has issues they have to deal with, it’s called being a grown up. If I couldn’t handle these things, then I was failing. And it wasn’t me I was failing, it was everyone else: my kids, my family, the people I advocate with. And then, for the first time in my life, I admitted defeat.

I finally broke.

I couldn’t do it all and that for me was a bitter pill to swallow. I let everyone down. I could feel it anytime someone Tweeted me or tagged me on Facebook. I read an undertone of disappointment in even the kindest messages. The disappointment of course was me projecting my feelings about myself onto everyone else. My anxiety was so bad I could no longer read or respond to Tweets, which I’m sure you’ve all noticed by my prolonged “Twitter Silence.” Facebook followed right behind because of the immense overwhelm I felt merely logging on. I deleted apps on my phone so I wouldn’t see little tags alerting me to new messages, I wouldn’t go on my laptop for days on end because I was afraid of what I might find and when I say “afraid,” I’m not exaggerating. I would get so nervous I was actually sick to my stomach most days. I was turning to music whenever I could just to calm myself. I need predictability and my entire world was becoming unpredictable. In advocacy situations can change in an instant, and when you are well you are able to handle those changes. It may not be easy and it may take time to switch gears but things are still manageable.

When you’re not feeling well, like I wasn’t, things begin to cave in. Like you’ve fallen into a deep fissure and you’re watching everything in your life, personally and professionally, crumble and fall all around you. On top of you.

Burying you.

Uhm… I Thought This Was Supposed To Be A Positivity Piece?

One of the hardest things I ever had to do was to admit that I was worth self-care. It took a lot of love from my new friends over these last two years to help me discover my own self-worth. I still wrestle with the idea. And the concept of self-care still boggles my mind. It is something I have to work very hard to achieve and many times I still fall short. But I am trying. I see the value in self-care and I’ve come to the realization that the concept is not a selfish one, it’s an unselfish act of love. Choosing to care for yourself so you can be strong for others is not self-centered.

As strange as it may seem (to me anyway), self-care in an indirect way
is actually a selfless act.

I get it now. That doesn’t mean I practice it daily or even weekly, but at least I get it, which means I’m halfway home. I understand what it means to the people I love to take care of myself. I get that they need to see me well because when I’m not it affects them, too, and that’s what really turned the tides for me. A good friend who has worked tirelessly to help me see myself in a different light and support me in finding my own self-worth suggested that by not taking care of myself I was indirectly affecting my kids in a negative way. That one really hit home. I remembered being a kid and watching my Mom “acting” as though everything was all right: A single Mom working two jobs and taking care of my brother and me by herself with support from my older sister. I remember how I worried about her and how it hurt me to know that she was sad/tired/depressed. My Mom is one of the strongest women I have ever known, and she has one of the best game faces in the business, but I still knew. And with that knowledge came the realization that I can no more fool my kids (or anyone else who really loves me), than my Mom could me. And I don’t want to fool my kids – honesty in all things, I preach! I don’t want to feel like I have to pretend for them like my Mom felt she had to for us. I want to be well.

I. Want. To. Be. Well.

And I will. But to get there I must take care of myself. I must take all of the love I have for others and give it to myself, too, so I can be good for everyone else, and also because I deserve it. My journey to understanding what self-care actually is has been long and hard, but I made it. I will continue to work at it until I can do it with ease. For now, I’m going about it from many different angles. I’ve been working for some time on accepting my body as it is naturally, trying to eat healthier, which for me means eating every meal every day. I’ve allowed myself to grieve for my father, for the relationship we could have had, and in the end finding comfort in accepting it for what it was. And I have made peace, finally, with the fact that I’ve had to drastically reduce my advocacy efforts to about a tenth of what they were.

I will be back full time when I have mastered the art of self-care because I know now from experience that without it I won’t last.

I will continue to support my children in celebrating their own self worth and teach them the importance and necessity of self-care. I will do my best to make it a part of my advocacy because each and every one of us has value and we are important. We need to realize our self-worth and reward ourselves with self-care.

In advocacy, self-care is not a selfish act of the egocentric, it is an unselfish act of the selfless.

 

Original Post: http://srsalas.com/acceptance-love-and-self-care-a-work-in-progress-autismpositivity2015/

The Autism Positivity Project

The Autism Positivity Project

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Autistic Positivity Self-Care and Love Prompt #AutismPositivity2015

By Heidi Jane Wangelin

Being Autistic and learning about self-care and self love has been an interesting experience for me. I encountered the Neurodiversity movement in late high school but did not get involved until I went to college and became an ASAN officer.

#AutismPositivity2015To me self-care means listening to what you need and prioritizing it and not making any excuses for it which I used to think was selfish. I’m horrible at doing things I enjoy just for myself and I am a terrible perfectionist and people pleaser. I’m empathetic and always doing stuff for others. I am also proud of being Disabled.

The main thing that got me interested in self-care came by an accident I had where I injured my back and it was a real wake up call on what I prioritize in life and that I was trying to force myself into a niche I did not belong in. To be honest this writing prompt has been one of my hardest struggles. One part of self-care is healing both inner and out. I’ve discovered it is easier for me to fix a back than to heal inside and to be patient.

Patience is a big part of self-care. It also means forgiveness to me forgiving myself for mistakes and that I don’t have to live in the past and what others say. Which leads me to the self-love part.

Self love is seeing yourself as you are and accepting it flaws and all and being okay with it . It also means learning about new parts of yourself. I’ve had a complicated relationship with self-love. I’m nearing my 25th birthday so I’ve spent a lot of time reflecting on the past year as I get ready for my new age and I also do this for New Years.

I noticed I’ve lost touch with myself and question my own life and meaning and after terrible bullying I lost a lot of self- esteem. The last three years have taken a toll on me. I noticed in my mind and life I spend a lot of time picking apart my flaws and sometimes I still swallow the independence myth that I must live by non-disabled standards yet I claim to love being Autistic.

But I’ve also been catching what I say and changing it for good.

That I’m worth more than my productivity and all my projects, that my voice still matters and that I have a voice at all, that I’m not a failure, and I’m still learning how to be myself, and that is no rush to forcing myself into a new season and being what I’m not.

Self-love is not always easy and I sensory overwhelm and shut down or go mute.

One way I engage in self-care is I like music it helps me to sing out my feelings and a long time ago I used to consider myself a writer. I write now and do not self-censor anymore but for years my writing was so dry. Sometimes self-care means confronting ugly emotions but it always gives me hope. Writing is like my mirror and for the first time in years I grabbed my journal after a traumatic thing happened.

I also really like walks in nature because it forces me to calm down and think less about my problems. Living in a city it is hard to find a patch of woods. I also really like rain here in Seattle and warm showers water makes me feel clean and centered. I also love making tea and coffee because it is so meditative. I also like doing art. I try not to apologize for it. I’ve discovered all of this due to my injury.

The other part of self-care and love is peace. I’m still trying to figure out what peace means to me what peace actually looks like. I have terribly anxiety. I’ve never known what it is like not to be anxious. But peace has to start from within. It is not easy to find. I can tell when I’m not being myself though and when I’m not I am agitated and self-conscious. Performing is hard work. I have that inner dark tendency to try and perform to get by a strategy I developed in high school and to be critical when I fail. So I think I need to learn to undo that but everything is slow and a process.

It’s alright to be broken and not have it all together to let it all down.

Brokenness teaches you things.

So I’m beautifully broken.

I don’t consider me outside beautiful but my inside makes up for that. I’m an in between period of my life. Self-care and self-love has made me more aware. I know I have a long way to go but I’m here still. Self-love and self care shows I’m a survivor.

Survival is beautiful. So this is what this all means to me.

 

Original post can be found on Heidi’s Tumblr: http://aspiewriter6390.tumblr.com/

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Turtle Is A Verb #AutismPositivity15

By Tuttleturtle

Success

I sit at a table, working playing a game with students. Next to me a conversation goes on, which I desperately want to join into, and can’t, because I’m working with their classmates. Instead, I busy myself listening, enjoying what I hear. Twelve and thirteen year olds discussing neurodiversity and what it means to be autistic. Preteens and teens discussing their own way of being – my way of being – and the idea of acceptance.

Another time, I sit at the same table, and a student fights within himself – overwhelmed by the noises of the classroom, but afraid of acknowledging his impairments. I’m there with him, sharing his disorder, but already accepting my own, and someone who he views as someone worth looking up to. I am open about my ear muffs in my backpack, and about how much more noise it would take for me to go through the effort of pulling them out even buried so deep. That day self-care and self-acceptance wins, because of acceptance of me, and he gets his own ear muffs to protect himself from the sensory onslaught he was feeling.

Teachers requesting where I got my neurodiversity t-shirt, aides asking about the problems of stim suppression, people turning to me as someone knowledgeable about autism and asking me questions. Most importantly, students treating me as a mentor rather than any other sort of adult.

Success – that is what I get. I make a difference in people’s lives, because of my autism, and because I know who I am. I am not afraid, I know I’m impaired, I accept the word “disability”, and what I get for it, is my success.

Everyone’s success is their own. No two people do the same thing, no two people share the same traits, disabled or not, autistic or not. No two people share the exact same goals. What I manage though, is managing to show people that they are worthy, by showing them myself. I manage to show them how to accept themselves, by showing them that it isn’t a scary place of lesser being and inability, it is a place of acknowledgement of impairments, and a place of finding themselves and their own goals. I manage to show them the worth of everyone, slowly, by showing them that impairments don’t define the worth of a person, even when they begin afraid of impairments doing so.

My success is helping people through that process, speeding it up, making it not one to be afraid of. My success is making other adults start to see bits and pieces, and what that might mean in education. My success is taking being myself and spreading the idea that you shouldn’t be afraid of someone like me, and it working. My success is seeing steps, someone asking me for help for more ways to take care of themselves, someone talking more openly about who they are, someone turning and talking to others about how autism isn’t a bad thing.

These aren’t things I could do without being autistic. I use my autism productively, because it is who I am. I need to help and share. I need to make people see the beauty of math, see that I’m not a horrible person because I am autistic, need to make people see how much they are, no matter their impairments. I need to take my self-acceptance and project it onto others, until they accept me too, until they accept themselves too, until things become better.

Because in too many cases the children are sitting their not understanding who they are, because nobody tells them. The parents fear because nobody tells them. The people around haven’t heard any words about autism besides “autism speaks”. There isn’t any ideas of what or who we are, except the idea of fear. I am not afraid of who I am, I see no reason to fear me, even if sometimes I need a little help.

So, I want to take this, and tell people. Take this and go to the children, and instead of the therapy, just play games working on math skills and while doing that talk to them as a peer and mentor. Letting them know who I am, being open about my diagnosis, being open about my impairments and about what I do because of them. Answering questions about how I cope, and about what my quirks are. Tricking them into learning skills that I think are necessary to learn, and I think will help them, focusing on problem solving skills, and critical thinking skills, and various types of reasoning.

And that’s what I do, I share, I teach, I show people and they get to know too. They get to see too the beauty, they get to see too, who they really are – someone who isn’t to be feared.


Original Post:http://turtleisaverb.blogspot.com/2015/05/success.html

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On the Train #AutismPositivity15

By Ibby Grace

On The Train

Mystic glyphs of graffiti adorn
Columns supporting workaday bridges
Whose large arcs quietly echo
Stacked truck fenders
And the curve of the creek nearby.

My chest swells with the warmth
I know is named affection
When I see my land’s geometry
From the window of this train.

~Ibby Grace

Ibby rides the train as a form of self-care ❤
You can read more at: http://tinygracenotes.blogspot.ca/

AutismPositivityTrain

AutismPositivityTrain

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