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S.R. Salas | Autism Blog: Expressions of PosAutivity #AutismPositivity2014

Expressions of PosAutivity, our 2014 Autism Positivity Flashblog, is intended to be a celebration of the multiple and varied ways to express experience or convey ideas. This year we hope to highlight the importance of flexibility in communication within our diverse community and honor multiple forms of personal expression, from the written word, to art, to photography, or a video (as a link)

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The Art of Communication

 

 “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

 

 

 

 

7 thoughts on “S.R. Salas | Autism Blog: Expressions of PosAutivity #AutismPositivity2014”

  1. Thank you for this breathtakingly articulate post about communication of all sorts – and LOVE. I just had a wild interaction with someone who was insisting we meet face to face to discuss a disagreement we’d had (for which, actually, this person took full responsibility – she’d been having a rough week) and it was very hard to convince her that I literally would NOT be able to feel my feelings about this AND talk about it At The Same Time. No way. I love that we are opening doors to being able to say this and be understood. To be able to say, “My child (or whoEVER) isn’t speaking right now (or in some context) in words but I understand him or her” — and for that to be valid on every level. Great post!
    Love,

    1. Eeeeee… thank you! I’m so happy to hear that!! We are opening doors, aren’t we – it gave me chills when I read that. <3 to You

  2. I really dont think there are enough likes for this post. I cant say i started out feeling this way, but through getting to know autistic people, and changing my perspective on autism, I am now in this place. My son loves me with all that he is, he shows me in little ways every day…once i let go of wishing for verbal manifestation of it and opened my eyes. Honestly I’d rather have this than some rote memorization drilled into him. His way of “speaking” is so normal to me now that i honestly do a double take when a little bitty kid comes up and starts chattering lol. The only issue i still have is when hes sick or in pain…i can read that hes off but he still does not communicate even non verbally what is wrong just that something is. So, mommy has to play guessing games if it isn’t something obvious. That part bothers me because I can see hes uncomfortable but cant fix it because i dont know what it is. Anyway i love, love, LOVE this blog and about to go on a sharing spree with it.
    PS…i used to talk to you often on twitter as Camelynelayne1 but very rarely ever on there anymore because I have so much trouble following who said what to who.

    1. it took me a second to realize it was you, Joy, but the avi gave it away and your Twitter handle supported it. It was so good to see you again. And I know what you mean about trying to figure out what’s hurting when they’re sick or in pain. We do the best we can and we figure it out as we go along. And thank you so much for your kind words, I really appreciate it – I’m so glad you liked the post :)

  3. I have read this entry a few times over, because I just love your message. It’s so nice to hear of another mom who never really missed what was never there. I try, and try to process the fact that other moms tend to have some kind of grieving process when autism is dxed, but I never did. It’s a completely foreign concept to me. To me, my son has never talked, so for me to feel sad about his nonspeaking status would be to feel sad about who he is, and I’m not. I just don’t feel sad about something that never was. He does communicate with me, and everyone else, as well with other methods that may not be standard, but just as valid.

  4. The Sensory Spectrum is hosting a special blog hop of posts from bloggers in June and we’d love to have you participate! Just imagine a list of bloggers sharing their stories about what it’s like to have sensory kiddos! Read more here: http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

    Joining in on this blog hop will undoubtedly get your blog more exposure as people will hop from one blog to the next to read the stories. I will also be tweeting everyone’s stories during the month and highlighting some on my Facebook page.

    I hope you’ll join us!
    Jennifer @ The Sensory Spectrum
    (and you can find me @ The Jenny Evolution, too!)

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