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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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S.R. Salas | Autism Blog: Expressions of PosAutivity #Autism Positivity 2014

 

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The Art of Communication

 

 By Renee Salas:  S.R. Salas | Autism Blog

 

 “Are you lost or incomplete? Do you feel like a puzzle, you can’t find your missing piece? Tell me how you feel. Well, I feel like they’re talking in a language I don’t speak. And they’re talking it to me.”   –  Coldplay

 

I love Coldplay. When I first heard the song ‘Talk’ I felt they had written it for Bas. And not because of the whole “puzzle” mention, I don’t actually go for the puzzle piece/autism thing, but because I wondered: Is that how he feels? Does he feel like we’re talking in a language he doesn’t speak? I mean literally, we do, but how does he feel about that? It’s a conversation I’ve had (one-sided of course) with him since he was probably three years old. I wanted him to know that I would always be there for him as long as he needed me, to help him understand the world in his way, and to make sure he had whatever tools necessary to navigate it. And that at any time if he felt like something was missing, I would help him find it.

 

The funny thing is, the parts others found missing in Bas, I never saw.

 

I go through life living it, being in it, doing my thing, whatever that may be. I find it surreal at times to say I have no real complaints – mainly because at a very young age, I learned I had no room to complain because no matter what, someone always had it harder. At times I might feel slightly guilty because I think to myself how very lucky I am to have the family I do, especially my kids. People have always looked at us, my kids and me, wherever we go. In the past I would feel a slight twinge of pride, which I quashed quickly due to this, because I was sure they were looking at me in envy of my fabulous kids – obviously wishing theirs were half as cool as mine! I have never paid much attention to other people (not in a rude way, but I’m usually otherwise occupied), and once my kids came along my acknowledgement of others lessened further.

 

But that was why people were staring wasn’t it? Envy?

 

 

 

Eyes Wide Open 

 

Merriam-Webster defines communication as a process by which information is exchanged between individuals through a common system of symbols, signs, or behavior.

 

It never occurred to me that not being able to speak was a sad thing, or a bad thing. That people saw my son’s lack of speech as a tragedy – and they felt sorry for him. Even worse, and more peculiar, they felt sorry for me?! These Moms weren’t staring at me in envy, they were staring at me and thanking their lucky stars that they weren’t me. That their kids were “ok.” I was oblivious to the fact that these women saw me as a ‘getting by’ or as ‘surviving as the parent of a child with a disability’ (I’ve heard this phrase before and thankfully can’t relate).

 

My love and hope for my kids, all three of them, and my faith in them as human beings shielded me from the thoughts of others. And that oblivion, my friends, is compounded by the gift of autism. My autistic brain never understood what other Moms meant when they said to me:

 

“I don’t know how you do it.”

 

How I do what? You see being nonspeaking is the way Bas was born, just like every other human being that enters this world. Babies don’t tell us what they want, but they absolutely communicate what they need. And as my son has grown, like other children, he has continually communicated – just not with words. And I have never not known what he wants.

 

So I began to take note…

 

I had always seen the way people look at my kids and me, specifically with Bas. And with the newfound information that people saw my son’s inability to speak as “a shame,” my perception began to change with it. I began to notice as they hugged their kids a little tighter, and if I looked closely enough, I swear I could see them sigh in relief. That last part may be my imagination, but I don’t think I’m too far off the mark. And I didn’t fully get it until I read a quote some time ago from actress Kate Winslet, founder of the Golden Hat Foundation (if you’re not following @KateWinsletGHF you should be!). Ms. Winslet’s daughter asked:

 

“What if I wasn’t able to tell you I love you, mummy?”

 

I was confounded by that question, because the answer was so easy. I felt like raising my hand and saying, “Oh, I know! Pick me! Pick me!” Because my very simple answer would be that you would just show me. And that’s what it’s all about, right?

 

Communication:  Information exchange between individuals.

 

I have never wondered if Bas loves me. Never. He looks at me and I know because he doesn’t look at anyone else that way. But that innocent question, “What if I wasn’t able to tell you I love you, mummy?” spoke volumes to me. I always thought when people commended me on my ‘strength’ and applauded me raising my son (that one still boggles the mind and if you weren’t sure, it’s not a compliment) that they were being nice. Like they were telling me ‘Good Job, Mom!’ not in a sympathetic way but more conversationally, you know like you would say to any Mom: “Your kids are wonderful, what a great job you’re doing!”  When I read Ms. Winslet’s words, the words of her daughter, it opened my eyes a little wider. And then, holy cow I finally got it… These Moms, the very same ones that praised my strength and commended me for raising my son, actually meant what they were saying to me.

 

They were not looking at me with envy they were looking upon me with pity! They were relieved they were not me!!

 

I am so glad Ms. Winslet shared the lovely exchange she had with her daughter, it’s important. It gives me an idea of what non-autistic people might be thinking when they look at us together. I’m not in the least bit offended. I understand they might feel this way because they don’t know. Parents may sigh in relief and count their blessings because they are imagining how they might feel if their child could no longer speak and if their child was Autistic. But they can’t really do that because it’s not the same. They are trying to imagine a child that never existed. These parents imagine a part of their child – the ability to communicate with words – being taken away and I will agree that sounds scary.

 

But you see Bas never lost his speech, because he never had it to lose.

 

In return there is something I can’t imagine: My son talking. He is 11 years old and I have never had a conversation, verbal or typed, with him. Am I sad? Not in the least. You see, I can’t imagine a speaking, non-Autistic 11 year-old Bas because that child never existed. Do I wish this imaginary boy did? NO. WAY. And why is that? Let me quote myself here because it’s really, really important:

 

“… the parts others found missing in Bas, I never saw.

 

As I said I have never had a conversation with my son, verbal or typed, but we’ve been connecting since the day he was born. Bas has communicated since the beginning with his eyes, his expressions, his body and with behaviors and emotions. He is learning to use assistive technology (iPad) to communicate, and some language but it’s extremely difficult for him. If you met us on the street and spoke to him, you most likely would not understand a word he said to you, and that’s if he chose to speak at all. Not because he’s rude, but because verbal communication is hard. It takes more time for him to process than most people are willing to spend with him. And the assumption is that because he cannot speak, he doesn’t understand. Let me assure you folks, he most certainly does. And that got me thinking about a quote I’d seen in a number of places that read:

 

“Just because I am unable to speak does not mean I have nothing to say.”

 

And honestly, I grew up believing false assumptions such as non-speaking people not having a thing to say, and I talked about that here. Learning I was completely incorrect in that is yet another instance in my life I thankfully embraced my wrongness and learned from it, and I talked about that here. I happily own that loss of ignorance (gratefully educated in these instances by disabled people themselves) and will share lessons learned from it again and again if it will help even one person realize the damage that way of thinking causes. I’ve seen it firsthand with my son and with my many disabled friends.

 

Having a nonspeaking child as well as a daughter (and myself) who experience nonverbal episodes, I can assure you we absolutely have something to say.

 

 

 

Can You Miss Something You Never Had?

 

Bas has never shown sadness, frustration or anger at not being able to talk. He’s a seriously happy kid. Does he get aggravated when people don’t understand him? Well, yeah, but don’t you? When he does become frustrated, I’m willing to believe the aggravation is directed more toward the person’s inability to understand him than at himself for not being able to speak. Because for Bas, speech has never been a natural form of communication.  We don’t emphasize or focus on his lack of speech. We talk to him (just like we do our other two kids) and use whatever form of communication – gestures, pictures, typing, body language – that gets the point across.

 

We have to learn to “listen” to more than just spoken language.

 

My hopes for my son do not hinge on whether or not he will be a savvy conversationalist or a non-speaker that uses assistive technology. I have no way of knowing whether or not he will even choose speech as his primary form of communication. Whatever his choice, it’s important to share that Bas is understood in so many ways: His gestures and body language; through some verbal exchanges; and with gentle touches and pressure point squeezes; and with his iPad; and, my favorite, with kisses and smiles. He will get what he wants and what he needs because without speech Bas, in his very own way, has perfected:

 

 

The Art of Communication

 

 

#AutismPositivity2014Flashblog

Visit the original post by Renee Salas at

http://srsalas.com/?p=3981

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