“EIGHT… THE MAGIC NUMBER IS EIGHT” S.R. Salas post for @squagdotcom

29 Oct
October 29, 2014

 

The following post was written especially for Squag

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”

* * * * * * * * * * * * *

The Burning Question

The question I am asked time and again: At what age do we talk to our kids about disabilities? And more specifically: At what age do we tell our children they are Autistic? For me the answer to either or both is…

as soon as possible.

Why wouldn’t we, unless we’re trying to keep something from them, which I talked about here.We want our children to know themselves, don’t we? And that’s not something that can start too soon. We begin teaching our children about themselves from the very beginning. We teach them about their bodies, we talk to them about eye and hair and skin color. We talk to them about family and friends, relationships, their feelings and emotions, so why not about their disabilities? They are a part of them.

If we want our kids to have a clear understanding about themselves we should tell them all about who they are, right?

Unless one considers disabilities something that should be hidden. We’ve talked about autism in our family since we realized our children (and I) were Autistic. As they’ve grown, we’ve also been met with auditory processing issues, physical disabilities, learning disabilities, Attention Deficit Disorder (ADD) and more. These things need to be addressed. It’s important to me that my daughter know that she has difficulty in school, not because she’s “dumb,” which is what she thought very early on, but because her “brain works differently,” which is what she told a classmate more recently…

Yessss! She nailed it!!

 

Early Disabilities Education At Work

The other night we attended an ice cream social for Lexi’s, school, which was held at a local public playground. We’ve been going every year for about 9 years now, and it’s pretty much the same year in and year out: Parents and teachers talking, children running, swinging, climbing and shouting…

I find it a bit overstimulating, but the kids seem to like it.

After a couple of hours, as it began to grow dark, it was time to go. My kids seemed to have a good time and discussed animatedly where we could go for a late dinner. As we walked toward our truck, Lexi became quiet and hung back, taking my adult-sized hand in her tiny 8 year-old hand (I forget how small she is sometimes). She then asked me to walk with her so we could speak in private. So we slowed up letting the others walk ahead, and as I looked down at her I watched the tears begin to fall. Like me she has sensory integration impairments and is hypersensitive to most stimuli, and most likely an empath as well, so tears from her are not uncommon.

“What is it?” I ask, sure she is having a bit of a meltdown from all of the overstimulation from the evening.

*She shakes her head unable to speak.

“Would you like to tell me later?”

*She shakes her head again.

“When you’re ready to talk, just let me know.” This is usual for her as it takes time for her to process information and to make sense of most social situations.

“They laughed at Bas,” she says finally.

*I feel sick

“Because he couldn’t talk they laughed at him!”

*And the tears fall harder. I swallow mine because now is not the time to be hurt by ignorance and bullying and the unfairness, and the other stuff that can go along with being disabled.

“Who?” I asked.

“Two boys. I asked them how old they were and they said they were in the 4th grade (Lexi is in 3rd). And I told them ‘He’s Autistic and he can’t talk!’ And the one boy said ‘sorry’ but the other boy kept laughing, then they ran off.”

*And she cries some more then asks me not to say anything to the rest of the family. She has difficulty with her emotions and becomes overwhelmed easily, usually only sharing them with me.

“I won’t tell,” I promise.

A bit later as we sat down to dinner at the restaurant, a seafood place that has become a family favorite, Lexi, still unable to engage with the rest of the family asked me to share what had happened. So I did. And do you know what the first thing I heard was?

“Yea, I remember the first time that happened with me and Bas,”  from my 14 year-old daughter, Bella.

I gulped the tears back on that one, too: “I remember the first time…”  I’m tearing up now as I consider my three excellent kids. All three already advocating…

And I am speechless.   And I am proud.   And I am honored to be their Mom.

 I’m thinking of a post I wrote quite some time ago, The Magic Number. And after re-reading that post, I was left with this…

Eight… The Magic Number is Eight

 

The Sooner The Better

And that’s why we talk about it early. Keep it simple at first. Conversations become more detailed and more questions will be asked as they get older, and these conversations should involve siblings, too! Until they’re able to advocate for themselves, their siblings are their strongest allies! Never underestimate the lessons kids learn from each other…

Even on a playground.

Self-perceptions begin to form at such a young age and if we don’t give our kids all the information because we think they’re too young, or that they won’t figure it out if we don’t tell them, then we’re doing them a disservice. They will find out if they haven’t already, and by not talking about it we run the risk of them trying to hide these things from us…

If we don’t talk openly with our kids, we run the risk of them feeling embarrassment or shame about a part of themselves, and it’s up to us as parents to do what we can to keep that from happening.

We have to learn to accept these things about our kids – their differences, it’s what makes them unique – and help them to love and accept themselves completely. Are there obstacles? Challenges? Holy cow, yes! And that’s why the conversations can’t start soon enough. Education is key, the more our kids know the better they are able to handle situations as they arise.

 

Advocacy In All Of Its Awesomeness

Eight? Isn’t that a bit young? I don’t like to think myself naïve, and I know I miss a lot of the social stuff, but eight? Really?! Ugh. I guess it’s not too young considering Bella was around that age when she first encountered prejudice against her little brother. So, how old was he? Bas is 11 now and still non-speaking. He’s never mentioned anything to me, but I have to wonder… What does he think?

What was going through his mind that evening when those boys were laughing at him?

Was he hurt? Did he care? Bas was not left out of the conversation (nothing about him without him). I talked to him that evening at bedtime. I told him those boys were wrong and that I was proud of him and his sister. He seemed happy as usual and not upset by any of it and I’ll take that as a positive, but right now I have no way of knowing for sure and I hate that. But there is one thing I do know, and more importantly that I know he knows:

Two times (at least) when kids were bullying him, laughing and making fun of him, his two sisters, whom he adores, stood up for him.

And they are wondrous and I am in awe of them, and do you know why? I never once asked or told either of them to do what they did. To advocate for their brother when others bullied him. They did that on their own.

They were both witness to ignorance and hate and they each made the choice to speak out.

 

In Retrospect

Do I still feel that discussing autism as soon as possible is the right thing? Without question. Discussing disabilities shouldn’t be a negative thing and if you think it is, please check out my blogroll and read about…

Autism Acceptance and Disability Pride.

I also wrote a teaser of sorts for an excellent book on the subject of disability pride Criptiques , which is a collection of essays by disabled writers. And while we’re on the topic, take the time to learn about the Social Model of Disability and why it’s well past time it replace the Medical Model of Disability with its outdated notions and disrespectful views of disabled people.

Advocacy is not always a conscious decision. Personally, I was advocating for my kids for years and had no idea, I was just doing what was necessary to help them be successful. And I’ve encountered the same in others. I’ve had people tell me they choose not to advocate, that they just can’t do it, and didn’t realize that any time they had asked for the smallest accommodation for themselves or someone else, or maybe told a couple of bullies that they need to lay off, that they have in fact advocated. You don’t have to protest, or march, or blog, or testify at the capitol (but it’s AWESOME if you can) to advocate. You could do something as seemingly small as educating two little boys on a playground like my 8 year-old daughter did…

 . . . And the ripples of your advocacy could be felt by thousands.

 

 

PRESS RELEASE: Disability Visibility Project @DisVisibility

21 Oct
October 21, 2014

I am so happy to be named the 60th Media Partner of the Disability Visibility Project! If you haven’t heard of it (yet) you must check it out ASAP! Below is a press release and I ask that you please join me in spreading the news far and wide. This is an amazing project dedicated to…

“Recording Disability History, One Story at a Time.” 

* * * * * * * 

PRESS RELEASE/NEWS

FOR IMMEDIATE RELEASE

Disability Visibility Project to Record Stories for the 25th Anniversary of the Americans with Disabilities Act

Preserving the Stories of People with Disabilities

SAN FRANCISCOJuly 25, 2014 — The Disability Visibility Project is a yearlong grassroots campaign to document the stories of people with disabilities in celebration of the upcoming 25th anniversary of the Americans with Disabilities Act (ADA) in 2015.

In partnership with StoryCorps, the national oral history organization, Disability Visibility Project encourages people to record and archive their unique and powerful stories at StoryCorps’ recording studios in AtlantaChicagoSan Francisco and in StoryCorps’ mobile recording booth that travels from city to city throughout the United States.

StoryCorps interviews are conducted between two people who know and care about each other. A trained facilitator guides the participants through the interview process. At the end of each 40-minute recording session, participants receive a copy of their interview. With their permission, a second copy is archived at the American Folklife Center at the Library of Congress.

Participants can to make reservations online with StoryCorps and mention the Disability Visibility Project in the “NOTES” section of the online form so their story will be tagged for this project. Check StoryCorps’ website for more information on how to participate:https://storycorps.org/reservations/

“The Americans with Disabilities Act was a landmark civil rights law that prohibited discrimination based on disability and provided equal opportunity for millions to participate in society. As we celebrate the 24th anniversary of the ADA tomorrow, we are taking this opportunity to remember and reflect as a community on the tremendous changes we’ve experienced so far,” says Alice Wong, Project Coordinator. “The struggle for disability and human rights continues and it is important for future generations to have this history to guide them.”

About Disability Visibility Project
The project partners with individuals and organizations to reach diverse groups within the disability community. “We believe all people are historic figures with stories that are worth sharing and preserving,” says Wong.

For more information: http://disabilityvisibilityproject.com

Facebook: https://www.facebook.com/groups/356870067786565/
Twitter: @DisVisibility

About StoryCorps
StoryCorps’ mission is to provide people of all backgrounds and beliefs with the opportunity to record, preserve, and share their stories. Each week, millions listen to StoryCorps’ award winning broadcasts on NPR’s Morning Edition.

For more information: http://storycorps.org

Facebook: https://www.facebook.com/StoryCorps
Twitter: @storycorps

Photo – http://photos.prnewswire.com/prnh/20140723/129665

Media Contact:

Alice Wong, Project Coordinator
Disability Visibility Project
Email: alicat155@gmail.com

On Being An Empath

09 Oct
October 9, 2014

Conscious v. Subconscious

I’d like to apologize for not being here like I (had hoped to? promised myself I would be?). Sometimes it’s hard to just “be,” you know? Alanis Morrissette said: “Life has a funny way of sneaking up on you…” And it does, doesn’t it? I’ve spent the last few years in a limbo of sorts. I was caught between focusing so hard on the details of my life that I was missing the big picture, but at the same time I was trying to not look to closely because I knew if I did I wouldn’t like what I saw, and…

 Life snuck up on me.

Again.

 

Unfeeling, Unemotive and Unreachably Autistic

While I do my best to stick to the positive and speak to people as respectively as possible…

 Bite me.

Sincerely. Anyone who ever told me how cold, unfeeling, callous and hateful I was because I did not “act right,” or react the way I was “supposed to” in certain situations, or because my emotions weren’t displayed in a socially acceptable way or because my expected actions didn’t quite fit the norm

Seriously… Bite me.

And for the rest of you, please forgive me for that. I don’t complain here often and you will rarely, if ever, find me bitter. It’s just that I spent a life time (it seems) masking my emotions, hiding my feelings and passing as non-Autistic and it was hard. But you know what? As I sit here talking with you now, I find I’m feeling quite bitter. You see, this last time I caught life sneaking up on me I learned a lot of things: Where my psychological self-abuse and constant feelings of guilt came from, and my eating disorder, my depression, and… other things.  So very much of it I’m grateful to know, all of it actually because it all added to that lifelong goal of getting-to-know-myself. However like many of life’s discoveries there’s been…

 “the bittersweet between my teeth.”- Young Blood by The Naked and Famous

Not including family and friends, if you follow me here or on Twitter (@srsalas13, please excuse the prolonged absence as I continue to decompress) you will know that I care a hell of a lot about people. And I truly care. I do. I have spent many late nights, sometimes sleeping only three hours at a time because I advocate not only with people here in the States, but with people all over the world. Advocacy does not sleep and it does not wait for me to sleep and in case you were wondering, it doesn’t pay either – not a dime. But that’s not what this is about. This is…

I care. A lot.

The people I advocate for or with, they all matter. They are human beings with lives each just as important as the next. And I care, god help me I care so much sometimes it hurts so desperately I want it all to stop. I want to cover my ears and close my eyes and make it all go away because the pain is too great: The pain in the anger, the joy, the sadness and the excitement of it all. It amazes me sometimes how the images and actions stay so fresh in my mind and I can’t get away from them.

 Heartless?  Unfeeling?  Me?

Me?!!

It hurts to think that people used to believe that of me because I didn’t respond fast enough or in the right way. It hurts because after hearing it for so long, I believed what they said about me. And I was so confused and afraid for so long, that is the person I tried to be. By the time I was professionally diagnosed as Autistic, I felt I had met all the requirements. Because of my numbness and unwillingness to let people in, I had earned my diagnosis.

 Autism MYTH No.1:

Autistic people have little/no feelings or emotions, sympathy or empathy because we are incapable.

I read that bullshit (excuse that one, too, please) in a few places years ago and I believed it. Of course it wasn’t written by Autistic people, but by some “experts” (using that term very loosely and with much sarcasm) that obviously didn’t know a thing about Autistic people.

 

Numbness Set In

So why would I believe such a thing about myself? Why would I think that I had little or no empathy? Well, it seemed people didn’t matter much to me (except for my kids). I found I could spend very little time with them without being frustrated and exhausted. I didn’t want to hear their problems. I didn’t want to hear their joy or sorrow. As a matter of fact…

I didn’t want to hear anything.

So I stopped. I began to tell myself that their words didn’t hurt me and that people didn’t matter, that their problems and issues were insignificant just like mine. Each person was only one person and there is a world full of hurt and pain and anger and who did they think they were complaining about themselves when we have global crises of monumental proportions?! Yeah, I was in that place…

So I shut down.

I chose not to feel. I became numb. Sound impossible? I can assure you it’s not. From about 2007 – 2011 that’s where I was and I talked about that here. The decision to shut down, to disconnect from society was an easy one and carried out with no feelings of loss or isolation. Quite the opposite, it was the best I’d felt in years. Was it so unusual to prefer numbness to the barrage of feelings and emotions I absorbed in an almost osmotic fashion from everyone I came into contact with, their feelings bleeding all over me like an attack on my nervous system. Suffocating. Mr. Spock said it perfectly…

“…you mistake my choice not to feel as a reflection of my not caring. Well, I assure you, the truth is precisely the opposite.” - Star Trek: Into Darkness, 2013

Yes! Like that! Exactly! When you feel so deeply sometimes you have to turn it off because it’s too much for the human heart (soul?) to bear. That was me as a child and as I grew the feelings I experienced with others, not together as a “we” but separately from them as a they, were so strong they could be painful. Even their joy hurt me as I became excited and stressed to the point of bursting. My friend Ariane Zurcher, who blogs over at Emmas Hope Book, wrote a piece on The Intense World Theory that addresses the issue of hypersensitivity:

“The Intense World Theory for Autism states autism is the result of a “super charged brain.”  Feelings, visual, auditory and tactile sensations are felt so intensely they are painful.  These intense feelings, coupled with extreme pain memory causes the child to become overwhelmed and shut down, withdrawing from stimulus.” – A.Z.

Many times my reactions to another person’s emotions were wrong it seems. I responded inappropriately because when nervous and stressed, which was how I’d spent a good portion of my life, that’s what my central nervous system chose as a reaction (e.g. I smiled throughout my grandfather’s funeral). Was I happy? Absolutely not, and I truly had no desire to react in that manner, but my brain – my body - did not want to feel the pain of loss, so it chose… joy?? In other situations, a person’s joy or pain was met with my flat affect.

And I felt for them, sometimes so deeply it was “attacking” my insides, but it didn’t show on my face.

Why? There are many reasons the main one being I didn’t realize my face wasn’t mirroring my feelings. At other times, and on a more conscious level, I wasn’t sure how to appropriately express myself and was afraid to try, or maybe I missed a social cue or misread body language, which to everyone but me screamed,

“Hey! This really hurts could I get a hug??”

But I didn’t get that. So I gave people what I would want in my time of need: personal space. I left them alone and it seems that was the wrong thing to do earning me the title of uncaring. But no one ever explained that to me. As a matter of fact no one explained much to me in regards to feelings and emotions – I know, I know, I was supposed to just “get” that stuff – and I’ll honestly say that while I saw people’s reactions to things, I never quite understood them. They were too emotional, over-reactive and seemed to wear their feelings on their sleeves. I’ve always been incredibly private and the mere thought of someone reading my face and knowing my innermost thoughts was scary (this is how eye contact can feel to me, too). I mistook other’s behavior because it was different, just as they mistook mine. But there were more of them than me. I don’t remember meeting another Autistic person until I was an adult, I’m sure I did and would guess they were most likely hiding in plain sight just as I was.

So basically I was confused, angry and worst of all surrounded.

Outnumbered.

And I had no idea what was going to happen.

As I got older I began to numb myself. I, like Mr. Spock, chose not to feel. And it worked! So well in fact that I worked to become those awful things some people said about me. Because they were right, weren’t they? Why would people who supposedly knew me and cared for me say those things if they weren’t true? Because they didn’t understand me, hell, I didn’t understand me. I did the best that I could with absolutely no support and no guidance. Those that called me heartless, callous, unfeeling?

They didn’t really know me. And you know what, they were wrong. THEY were wrong.

Not me.

I missed a lot and tended to misunderstand what I didn’t miss. So maybe I picked up certain obnoxious habits like sarcasm to hide my slower processing time. Anything to draw attention from my inability to process auditory information, or the fact that I couldn’t read between the lines or that I didn’t get the joke that I was the butt of.

All of these things combined to create an unpredictable world and add to my constant feelings of fear and dread.

Numbness when it finally came was a gift. A respite from feeling badly about myself day in and day out and not knowing why I was feeling that way. It took me many years and some very kind people to make me realize those people had been wrong. In addition, there was an important fact right in front of me for over a decade and I never saw it. I said it once already did you catch it?

“Well, because people didn’t matter much to me (except for my kids).”

Except. For. My. Kids.

Hard to claim you’re completely numb and that people don’t matter when you are blessed with three living, breathing, beautiful human beings, whom the sun rises and sets on for you and whose every joy and hurt is your own. Looking back, I was afraid. Afraid to do and say the wrong thing, to be laughed at, to hurt someone’s feelings to completely ruin a relationship over my inability to get it right. All those years ago I took the easy way out. I let social norms dictate who I was and how I acted and when I had had enough of their estimation of me I shut down. I chose not to feel.

 

Here And Now

It’s taken three years and many new, wonderful and loving friends to realize that I am a good person: I. Am. Good. And I always was. In a recent session, T, my therapist said off-handedly…

“You’re an empath.”

I thought it was her turn to lie down on the couch. An empath? Me? If you’re not sure what an empath is, here’s a quick definition from the Urban Dictionary:

A person who is capable of feeling the emotions of others despite the fact that they themselves are not going through the same situation.

I was so surprised at her assessment, and she said it so matter-of-factly that I shared it with friends, and do you know what they said?

“Well, yeah, of course you are. Didn’t you know?”

??!!!

No, I didn’t because even though I’ve come to many very positive realizations about myself and have had many new experiences that have taught me otherwise, I still have a good three decades of “you are awful” to contend with. And let’s not forget that lovely little tidbit from Autism 101 written and approved by non-Autistic “experts,” which I bitterly repeat:

Autism MYTH No.1:

Autistic people have little/no feelings or emotions, sympathy or empathy because we are incapable.

 

I Am An Empath… Again

Of course I never stopped being an empath I was merely ignoring whoever or whatever I could get away with because it was my only defense. I never truly stopped feeling although I had the floodgates locked tight. So when I say I feel again what I mean is I am feeling differently and this time on my terms and in my own way, and with respect to myself as well as the people I am interacting with.

People… You must stop expecting us to react or respond in non-Autistic fashion.

It’s unnatural, and understand that if we do you’re merely seeing what we think we’re supposed to show you (think social skills training) and not how we really feel. For me, I handle social situations in the best way that I can and hope it’s ok and received well and if it’s not then hopefully the person with whom I am speaking will explain more clearly what they need.

I am not heartless.  I am not unfeeling.  I am not uncaring.

Learning I was Autistic five years ago was a liberating experience. Over the last two years I’ve enjoyed the freedom to explore as an adult, hindered by no one, countless Autistic experiences outside of my own and those of my kids. I have talked with and read Autistic adults, teens and children and it’s been a learning experience that I will continue to share on this blog because…

It’s the TRUTH about autism:

Autistic Lives.   Autistic Experiences.   Autistic Education.

By Autistic People.

Autistic writers, bloggers, speakers, performers, artists, poets, advocates, activists and so on, working to erase the stigma placed upon us by non-Autistic people.

Autism TRUTH No. 1:

Autistic people have multifaceted, multi-layered feelings and emotions, sympathy and deeply-felt empathy because we are capable.

AUTISTIC EXPERIENCE Defined… Neurotypically???

12 Aug
August 12, 2014

 

Is it Truly the AUTISTIC Person’s Experience?

My son, Bas, was 2.5 years old when it was first suggested to me that he might be Autistic. This wasn’t an informal or formal diagnosis, but a family member mentioning off-handedly:

“Uhm… Renée? I think he’s Autistic.”

I was surprised by the idea. I mean, he wasn’t talking yet, and I hadn’t the slightest idea why, nor was I worried because I didn’t talk until I was almost 3. However, lack of speech wasn’t the only thing different about Bas, and I realize now what others saw when they looked at my son:

The Red Flags of Autism.

But at the time, his so-called symptoms were just part of Bas. For the hell of it, I ended up doing a cursory search of autism and what the diagnosis encompassed. Those of you who follow my blog know that in-depth research into Autism  did not begin for me until Bas was about five, so what I’m sharing with you today happened approximately 2.5 years prior to that.

Now this is NOT a post about diagnosis, so if you were thinking of skipping it and waiting until I posted something more interesting…

Don’t!

We’ll be melting down shortly.

 

Autism, Its ‘Symptoms’ and Why My Autistic Son Could NOT Possibly be Autistic… Could He?

During my initial research, I accepted little and rejected so much information that much of it remains a blur. However, there was certain information that stuck with me. Meltdown, for instance, was a term I came across a time or two that I found, well… unsettling. The information I found described what could only be called rage-filled tantrums lasting for hours on end. Parents, scared to death, unable to help or control their children’s outbursts. Now, that was more than 8 years ago and I can honestly say I ignored a lot of what I came across and can no longer recall it in much detail. Fear and frustration at all of the negative information I was reading played a huge part in my choosing to forget it as well, but what I do remember is this: What I was reading scared the hell out of me! It didn’t sound anything like my child.

Note:  I have to share that none of the information I came across mentioned adults, possibly because the idea of adult Autistics was merely that…

AN IDEA

While I am research-driven, the many symptoms of autism: meltdowns, stimming, scripting etc… were not terms I studied in great detail, mainly because the information given initially did not describe my child. I was assured that if Autistic, my child would be unaffectionate, unemotional, unloving, uncaring, untouchable, unreachable. None of which is even remotely true.

Please keep in mind this was before my son (or his sister and I) was formally diagnosed

My son is the most laid back and most affectionate person in my family. He has a great sense of humor, although I’ll admit I haven’t the slightest idea what he’s laughing about half the time, and he’s very reachable if you take the time to learn how to reach him – i.e. pay attention. You see the information I found did not describe anything I’d ever witnessed. I’ll take partial blame, maybe I should have delved more deeply, but what I found was so far off base, at the time I didn’t see a need for the further exploration that would take place a few years later. However it may sound,

I truly was not a parent in denial.

I was a parent discovering information that did not describe her child. Instead I was finding data on subjects in clinical studies that removed their humanity and created statistics. As a Mom I couldn’t relate the information to my living, breathing, beautiful son.

 

The Meltdown as a Neurotypically (NT) Defined Experience

I would like to offer a reason as to why I was under the impression we had never experienced meltdowns. Interestingly, the material I encountered was not authored by Autistic people. All information I read was from Neurotypical (NT) resources or learned from one or two NT parents of young children. So the description of a meltdown for instance, was not via anyone who had ever actually experienced them, but from people who had observed them. Same for all the other Autistic ‘symptoms’ I had read about.

I’m sure the accounts had some validity, but it didn’t help me understand what a meltdown was. It gave information as to what to look for: warning signs, characteristics, behavior…

But it didn’t tell me what a meltdown FELT like.

When a NT person writes about our experiences, it makes them impersonal. It is not an experience that comes from within. It can’t possibly convey the emotions and feelings that are felt during the meltdown. It can’t share the trigger and why it was felt so powerfully. It can’t explain the anger, frustration and fear because coming from an NT, it is only an…

Eyewitness account

… and how reliable is that? Unless the Autistic person described the entire experience in detail, in which case the observer still can’t feel what it’s like, then the observation is merely an outsider’s opinion.

At no time in my 42 years, my daughter’s 14 years or my son’s 11 years has any of us experienced an uncontrollable, rage-filled, screaming tantrum that lasted hours on end with no respite. Am I saying that a meltdown can’t be that?

No, I am not.

Meltdowns vary from person to person and each episode can be as unique as the person experiencing it. I have also learned that my meltdowns – yes, I’m finally accepting it – vary from time to time, as do the triggers and the intensity and duration.

 

So, You Do in Fact Have Meltdowns?

…Absolutely, and so do my kids. Once I joined social media, and met so many amazing Autistic people via Twitter and through other blogs, I learned through their expertise and information sharing that I was having meltdowns, and that I had been having them since I was old enough to remember.

I’ve talked to you before about guilt and masking so you understand that I’ve been in hiding almost my entire life. When I was very young, unless I completely lost it with my older brother, I hid my meltdowns. Why? Because I had no idea what was happening to me and I was scared to death someone would see, think I was unstable and send me away. I can remember sitting in my room as quietly as possible, as young as five years old, rocking, crying non-stop and pulling my hair. I remember biting myself, in places on my body that couldn’t be seen and with enough control to not leave a mark.

As I got older, I remember hitting things: walls, doors, floors, myself. Pacing back and forth, a nervous wreck. The anger had gotten worse by then, and my ability to hide it diminished rapidly. By 12 my Mother decided I had hypoglycemia like my oldest sister, and that was the reason for my outbursts. We couldn’t afford extra doctor’s appointments (and had no insurance), but my Mom had been nursing my sister’s hypoglycemic ‘fits’ for so long, she knew how to handle them. In essence, my Mom was…

Ascribing her NT ideas to explain my Autistic experience.

These episodes continued through high school, and by my freshman year in college, I was a mess. My hypoglycemic ‘fits’ were now accompanied by full blown panic attacks. These new episodes were defined by a medical doctor who, as far as I know, was not Autistic. In addition to both the hypoglycemic and panic attacks, I had insomnia, chronic migraines, and what appeared to be obsessive compulsive disorder (OCD – undiagnosed because we still lacked insurance). My Mom, of course, was the only one who knew because I hid what was going on from everyone else.

Eventually there were extensive evaluations and CT Scans to rule out possible medical causes. Since nothing was found, except low blood sugar (hypoglycemia) in my blood work. The official ruling…

It was all in my head and I needed to calm down.

So, what did I do? Worked even harder to hide everything from everyone and for two very good reasons:

1.) The Doctors must be right (because nothing was found during evaluations)

2.) I was scared to death I was losing touch and might be sent away.

 

AUTISTICS are the EXPERTS

Let me say that again so it will sink in…

Autistics are the experts.

When I am talking about Autistic life, Autistic people are, hands down, the experts. I understand we have many professionals that are experts in the study of Autism, I know several I respect highly. However, unless they themselves are Autistic, they cannot share our experiences. They cannot tell you, personally, what being Autistic is like because they cannot experience it.

And that’s what I had been missing.

I did not know my kids and I had meltdowns (shutdowns, nonverbal moments, that we were stimming, and scripting…) because, until I began reading Autistic blogs and communicating with other Autistic people, the accounts I had read didn’t fit. They were impersonal descriptions of observed behaviors. They were…

Feelings clinically defined and outlined by non-Autistic people.

Can you imagine if you were having some sort of an emotional breakdown, and instead of finding support of some kind that could address your feelings, your triggers and your personal experience, I brought you a checklist of matching symptoms so I could define your experience for you?

 

Meltdowns Today

Do I still have them? I do. Not often, but I do have them. Do they feel like they did when I was younger? Rarely. The anxiety and anger have lessened dramatically and I believe it is because I am older and have a better understanding of my personal needs and control over my experiences. Sometimes I cry but mostly I just get angry. As SIB goes, I might dig my nails into my hands hard enough to leave marks, but not break the skin. I’ve noticed now that I’m older the non-verbal moments are my biggest tell. I can’t say a word. On the inside I feel as if I’m going to explode, wrought with anxiety and seething with anger, but on the outside I’m pacing and looking for a quiet place away from people.

I won’t share my daughter’s or son’s meltdowns, which are thankfully few and far between. First, because I didn’t ask them. And second, meltdowns are personal experiences and I’m not comfortable sharing that about them, which is why I didn’t ask in the first place. When they’re older, if they like, I’ll let them share.

 

The Remedy

For me? Easy.

Leave me alone.

And I mean that as kindly as possible. And it sounds like the last thing a parent might do for a child when they see them in emotional upset, doesn’t it? And maybe it’s not the right thing for everyone, but I have always handled them on my own, even before I knew what they were.

A meltdown for me is extremely emotional, embarrassing and frustrating and not something I want to share with anyone.

My kids handle it the same way. If any of us are feeling a possible meltdown coming on, we just leave. Go to our rooms or somewhere in the house we can be alone. I don’t worry for injury with either child, so leaving them alone is not a safety issue. Being alone allows us an opportunity to calm down and gain a better understanding of what is happening and how we would like to deal with it on our own terms. It gives the feelings of anger, and the anxiety and stress time to dissipate so we can begin self-repair. We are well aware that someone is a shout away if we need them, and there is a security in that, but at the same time we need the control over our personal space so we can make sense of things.

Although people tend to use them frequently, compassion and support are the last things my kids and I are looking for during a meltdown. I talked about what that type of support really feels like here, and it’s not a positive experience. We generally like to be left alone for however long it takes for us to feel in control. Exhaustion tends to set in afterwards and we just want to rest.

 

The Autistic Experience, AUTISTICALLY Defined

Again, so much of the information available is written by non-Autistic people, and while some of it is very helpful (check my blogroll for some excellent non-Autistic writers) it is still someone sharing experiences about others. And these folks will tell you the exact same thing I’m going to tell you:

If you want to learn about meltdowns or any other Autistic experience, and what your child may be going through…

ASK AUTISTIC PEOPLE

I also have several excellent Autistic writers on my Blogroll that I consider “must reads,” who share their experiences so beautifully it’s as if you’re sitting right there with them. I urge you to read their words and understand the gift they are giving you when they share meltdowns and shutdowns, or what it’s like to be non-speaking, why they stim, their thinking processes and how very differently they experience social interactions and the environment itself.

 If you listen to Autistic people, read our work on blogs and in books, through poetry and essays, or perhaps via social media, you will better understand the…

 AUTISTIC EXPERIENCE

 

 

S.R. Salas post @squagdotcom “Life Lessons in Light and Sensory Processing”

24 Jul
July 24, 2014

The following post was written especially for Squag

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”

*************

Light Bright

Like many Autistic people I have sensory integration issues (impairments, condition, whatever it’s being called these days…). So what does that mean exactly? For me, it means reactions to sensory input are very intense. My senses of touch and hearing are greatly affected. You will see me avoiding touch if I don’t get to initiate (be in control) or prepare for it and I will cover my ears if noises, which don’t seem to bother others, are too much to take. And while touch and sound are two of my more sensitive senses…

Neither comes close to vision and how light affects me.

 

Light In Its Many Forms

I love sunlight it feels so good! A sunny day is a great day – it’s shiny and cheery. Oddly enough, as a child I woke to sunny mornings in pain because light was too bright. Even though it wasn’t shining directly in my window, opening my eyes each morning was a process. It felt like I had soap in them. It probably took a good five minutes for me to be able to open my eyes fully, but once adjusted I was fine.

Light has always been a dominating factor in my moods and productivity. The sunnier the day the better my mood and the more work I get done. Natural light is most comfortable and incandescent bulbs are okay, too, but there is one type of lighting that has bothered me my entire life…

Fluorescent lights

I hate fluorescent lighting. After too much exposure it actually has a sedative effect on me, which would have been nice to know growing up. I still remember sitting in class as the lights glared on white paper, white-ish floors and white walls. And the constant flicker that made me feel sick and jittery while the hum tried lulling me to sleep. Do fluorescent lights still affect me today?

Absolutely

I don’t detect the flicker in fluorescents today and lighting covers have changed, so maybe that’s why, but they do make me tired and at times nauseous. So where am I effected?

Grocery stores, office buildings, doctor’s offices, retail shopping, airports… just about everywhere

 

Hindsight Being What It Is…

Looking back this knowledge would have been so helpful. I believe it could have explained some of the nervousness and lethargy I experienced in school in conjunction with my lack of concentration skills. Imagine if I had told my teacher…

“Excuse me, Mrs. Kraft, these flickering lights are making me sick and the humming is making it hard for me to listen to you. And they’re really bright and make my eyes tired, too.”

What might have happened? More importantly, why didn’t I do just that? Why didn’t I tell my teachers so they could help me?

Simple…

If you are born with sensory integration impairments and have lived every day with them, then you don’t know differently.

I didn’t know that the other kids weren’t struggling throughout the day. Unlike me, they weren’t fidgety and made nervous or sick by the flicker. They weren’t missing what the teacher said because they were lulled into a dreamy state by the constant hum. And their eyes weren’t tired from the brightness and glare…

I had no idea.

All three of my kids have sensory integration issues so I work closely with their teachers to make sure their days at school are as comfortable as possible and accommodations are made…

  • Fluorescent free work space (natural light whenever possible)
  • Earbuds/headphones with or without music to help cut down on background noise
  • Sitting on an exercise ball instead of a chair while working
  • Breaks to get up and walk around the room or go outside when they need them

I remember how poorly I did in school (elementary years) and how it negatively impacted my learning and perception of school and I don’t want my kids to experience the same. I want their education to be a positive experience so I make sure accommodations are made. When my oldest daughter is overwhelmed by the other students or by noise, she is able to work in a more quiet space and wear earphones to listen to music. My son, too, is able to wear earphones and is given many breaks throughout the day. And my youngest sits on an exercise ball instead of a chair and uses earphones, which help her concentrate more fully.

These types of things are not too much to ask and it is up to me, until they are older, to make sure accommodations are made so they can be…

SUCCESSFUL  IN  SCHOOL

 

 

#EducateSesame… An Open Letter to @SesameWorkshop from @GreggBeratan

29 Jun
June 29, 2014

This #EducateSesame Flashblog is brought to you by the hard workers at #BoycottAutismSpeaks @Boycott_AS:

“The good people at Sesame Street Workshop have made a terrible mistake by partnering with Autism Speaks. Although we assume their intentions are positive, their association with Autism Speaks is downright dangerous for Autistic children, Autistic adults, those that love them, and all people wanting to learn about autism. Sesame Street Workshop educates children around the globe. If the information they use about autism comes from Autism Speaks, it could create detrimental repercussions for generations to come. 

Because Sesame Street has not done it’s due diligence in learning about autism and Autistic culture before entering this partnership with an organization which is currently under protest by the very people it claims to serve, we must take action to #EducateSesame ourselves.”  - Boycott Autism Speaks
*****
The following is an open letter to Sesame Street from Dr. Gregg Beratan, Lead Consultant for Education, ADAPT Rights Group, Mumbai. He is a wealth of knowledge regarding disabilities and alongside writing and research, Gregg shares information daily from news sources in the U.S. and around the world. You can follow Gregg on Twitter @GreggBeratan and I highly recommend it. He’s a valuable resource in the community and I owe him a big thanks for offering to guest post for the Boycott Autism Speaks, Educate Sesame flashblog.
Thank you, Gregg! :)
*****

 

Dear Sesame Street,

I’m 44 years old, part of the first generation that has never known life without Sesame Street. Whenever I heard the words “Sunny day, sweeping the clouds away…” a smile came across my face. For this reason I probably watched it much longer than was age appropriate. I don’t think I could possibly count the number of lessons I have learned from your show. My favorite teachers growing up were Mr. Hooper, Grover, Linda, Susan, Mr. Snuffleupagus, Kermit and Big Bird. They were effective teachers, and as someone who struggled to learn as a kid, I wasn’t easy to teach.

The lesson they taught more consistently than any other was…

ACCEPTANCE.

On Sesame Street everyone was part of the community, every difference was valued. Difference wasn’t demonized on Sesame Street, it was cherished. For this reason I can’t begin to express how disappointed I was to learn that you had partnered with Autism Speaks.

For the longest time Sesame was the only place I remember seeing disabled people on TV. From Linda Bove teaching us about sign language, Dee Schur teaching about Braille, to disabled kids who have appeared in numerous segments over the years…

Sesame has, for much of its history, been the only place on television where disabled people had any visibility; and not only were they visible they were full, active members of the community.

Your lessons about the value of disabled lives extended well past the actors and kids on your show. I can remember seeing so many skits on disability over the years, from Rosita trying to understand why her father Ricardo has returned from military service using a wheelchair to the wonderful Princess in the low tower which elegantly teaches kids that built environment plays a much bigger role in people’s ability to be a part of the community than any impairment does. Sesame Street has been on the right side of disability issues for as long as I can remember, that is until now and your partnership with Autism Speaks.

I can only guess that you looked at Autism Speaks’s name, prominence and their nonprofit status, and assumed they were a good organization to partner with. If you looked a little more closely you would have seen that they are the antithesis of everything you have stood for over the last 45 years.

Autism Speaks is an organization whose primary message is that autism and Autistic people are to be feared and combated.

You wouldn’t have to look very far to see the contempt they hold for Autistic people. You could take note of the fact that they have no Autistic people serving on their board of directors, or you could listen to the way their founders speak about Autistic people, referring to them as burdens, lying to the world saying their families are not living but merely existing, they paint a portrait of Autistic children as family destroying monsters (and not the good Sesame Street kind of monster). If you looked at these things you would definitely not see an organization worthy of associating with Sesame Street.

As someone who sees himself as neurodivergent (although not Autistic) and as someone with many friends and loved ones who are autistic, I find it disturbing that a show I love, one with such a rich history of promoting acceptance would partner with an organization that has made the eradication of a whole group of people a central focus of its mission. Autism Speaks spends more on their salaries than they do in supporting Autistic children and their families. And if you read any of the information they offer, you might think there is no such thing as an Autistic adult. If you truly want to work with organizations that promote autism acceptance, organizations that can “See amazing in all children” I suggest that you look to the Autistic Self Advocacy Network or The Autism Women’s Network or The Golden Hat Foundation, these organizations understand the value autistic lives add to the world.

Since this partnership was announced Autistic people have written to you, tweeted to you, messaged you on Facebook, tried calling you and their concerns have been dismissed or ignored.

This is not the Sesame Street I grew up with. It is not the show that stood up for acceptance and equality and against fear and hate, the Sesame Street of Mr. Hooper, the one where every member of the community was accepted for who they are. I hope you will reconsider this partnership; Autism Speaks stands for everything Sesame Street has opposed. I still love Sesame Street and everything it has taught me over the years, but right now I am deeply disappointed in you.

Sincerely,

Dr. Gregg D. Beratan

 

 

S.R. Salas post: “Advocacy In Others’ Words” for T-21 Blog Hop @Down_Wit_Dat

21 Jun
June 21, 2014

 

ADVOCACY

Jen who blogs over at DownWitDat and also runs the monthly T-21 Blog Hop has been rather generous lately in selecting topics for us to write on and it goes something like this…

“Write whatever you want, just make sure it’s an advocacy piece!”

I’ll have to admit that with such strict (hee hee) guidelines it’s been incredibly difficult to stay in bounds. However, I have done it each month except one I think and it generally sounds something like this…

“Oh (insert curse word) Jen, I forgot! Can I link one of my old posts??”

It’s not because the T-21 Blog Hop is not important, I assure you it most definitely is, which is why I always try to participate. It’s the fact that I still can’t figure out where the time between the first of the month and the 21st goes,

Every. Single. Month.

Is it a phenomenon of having kids or getting older? Or perhaps a combination of the two? Whatever the reason, the fact remains that at least 21 days (and sometimes more) mysteriously go missing from my calendar each month. But that’s an entire blog post in itself.

Anyway…

 

IN OTHERS’ WORDS

I’m not going to write a post on my advocacy efforts past and present – you get that here and on Twitter (and Facebook when I can handle it). Not my show today, folks. Instead, I’m going to sell you something!

Not literally, so keep reading.

I just finished reading Criptiques, edited by Caitlin Wood. It is a collection of essays by disabled writers addressing the “provocative sides of disability” some whose work I already know and love (Lydia Brown, Ibby Grace, Alyssa Hillary, Emily Ladau) and many I had the pleasure of reading for the first time. My thoughts…

**speechless**

But, since speechlessness doesn’t make for a very good blog post, I’ll do my best to do it justice by telling you Criptiques is:

Advocacy  •  Activism  •  Awesomeness

I heard the word “crippled” growing up when speaking of disabled people. In those days it was used to describe people with physical disabilities. As I began to get into advocacy, I was told the word “crippled” was a derogatory term right along with “disabled” and that out of respect I shouldn’t use them.

It’s important to note that I was told I shouldn’t use these terms by non-disabled people.

The very same people that told me not to call myself or my kids “Autistic.” That obviously didn’t stick. And as I found myself drawn further into the disabled community I began to learn from other disabled people. See what I did there? I used the word “disabled.” It is an Identity First Language (IFL) v. Person First Language (PFL) choice which is another post entirely and if you’re not willing to wait, there’s a great piece on that very topic in Criptiques. However, I will sum up for you quickly by saying while I personally choose IFL, I believe it is up to each person to choose how they want to speak (or not speak) about themselves. It’s about respecting individual choice and I ask the same in return.

 

NO APOLOGIES

In her Introduction, Criptiques: A Daring Space, Wood invites readers in unapologetically

“Crip is my favorite four-letter word. (…)a powerful self-descriptor (…) a challenge to anyone attempting to conceal disability off in the shadows.”    - C. Wood

Uhm… should I be reading this? I thought “crippled” was a bad word?? Yet Wood writes a most tempting introduction that has me champing at the bit to get going…

“Our crip bravado reaches out like sun rays and emboldens those who need our swagger the most – those strangers to disability pride. The ones who’ve travelled a long, lonely road and finally discover the joys of chosen family and friends and a rich history they don’t teach in schools.”   - C. Wood

(…)

“Welcome to Criptiques:  a space of shameless flaunting and significant contribution to crip culture by crip culture.”   - C. Wood

Oh, yes! She had me at “bravado“, “swagger” and “shameless flaunting.” I had to reluctantly remove my fingers from the keyboard of my laptop several times to keep from sharing Wood’s entire Introduction, an advocacy piece in itself, with all of you. This post is not a review of Criptiques, although I’d like to write one at some point because it’s an important book. However, after just finishing it I have some re-reading to do because, as my friend Lei and I were discussing, not everything sinks into our Autistic brains on the first go round. In addition to that, a lot of what I learned needs to marinate, to gel. So many new thoughts and ideas rolling around inside my head I couldn’t possibly put it all into words at the moment. Instead what I offer you is a trailer of sorts, a preview.

 

YOUR ADVOCACY TEASER

Learning is a continual process I plan to enjoy for the rest of my life because it is impossible to know everything. Obviously. With that, one irksome creature remains constant and I have to admit I’m becoming less surprised each time I encounter it: my own ignorance.

Damn!

I don’t curse here very often, but the more I get into disability rights advocacy and think I’m really starting to “get it,” the more I realize how much there still is to learn. And I am grateful for the knowledge and know it will serve to make me a better advocate/activist. Criptiques is one of those pieces I consider a teaching tool as I found myself learning loads of new information from the Introduction on p. 1 to the last word on p. 256.

Okay, so here’s your teaser…

A collection of words to get you thinking:

Ableism • Activism • Ageism • Anorexia • Art • Autism • Beauty • Blindness • Brain Injury • Burlesque • Cerebral Palsy • Chronic Pain • Crip Culture • Desire • Disabled • Discrimination • Drooling • Erasure • Gender • Hearing Impaired • Humanity • Identity • Intersectionalism • LGBTQ • Love • Marginalized • Noncompliant • Oppression • Poverty • Privilege • Provocative • Racism • Rebellion • Revolutionary • Schizophrenia • Seduction • Sexuality • Sizeism • Truth • Unapologetic • Vulnerability

And much, much more…

Do I have your attention yet? Good! Am I going to tell you more about the book? Nope. You can buy it in paperback, which was my first choice. What can I say? I’m old-fashioned and like to hold a book in my hand, make notes on its pages and dog ear ‘em. And for those of you who are way more hip than me, until the eBook is ready, it is being offered as a free downloadble PDF. However you come by it, I highly recommend you read it. Whether it’s to agree, disagree or spark further discussion, the topics addressed – which some may find controversial – are most definitely thought-provoking and educational.

Criptiques opened my eyes wider, I don’t know if I can blink anymore, and my mind further. As disability rights advocates one of the most important things that must be done is to listen to disabled people. Our ‘voices’ are important whether we agree with each other’s point-of-view or not. And it’s not always going to be about agreement. Just as it’s not all about you, or me, or him or her. Instead, it’s about the entire disability rights community to which we belong. It’s about ALL of us.

In closing, I promised Jen at DownWitDat an advocacy piece so here’s my offering and this time it’s in the words of others:

 C R I P T I Q U E S . . . Read it!

 

 

S.R. Salas post @squagdotcom “Sweet Summer: Blessed Breaks and Divine Decompression”

07 Jun
June 7, 2014

The following post was written especially for Squag! If you haven’t heard of it, You must check it out…

What Is Squag?

“SquagTM [skwag] is a curated, online experience for kids on the autism spectrum (and their siblings!) that allows them to initiate, explore, and self-discover. Our SquagpadsTM give parents an opportunity to learn about their kids and give kids a new way to learn about themselves, making screen time more meaningful.”

 

 *************

Sweet Summer:  Blessed Breaks and Divine Decompression

At some point each of us needs a break from something. For many Autistic people the need for breaks is more frequent and tends to last longer. What would be considered an uneventful day to non-Autistic people: going to school, going to work or whatever the daily routine is, can be extremely exhausting for us.

While peers are in school focusing on academics and socializing, my kids are enduring sensory overload (lights, sounds, textures, odors).

In addition, they are trying to focus on academics that are generally not taught in ways that their brains get right off the bat. Couple that with the fact that while their peers are socializing, my kids are busy trying to observe, learn and even mimic them so they can – if they’re lucky – get a shot at socializing. That is if they’re not so busy learning the rules of engagement that they either forget to socialize or are too tired to try. I know these things because we talk about it, and I speak from experience. Here’s what I’m trying to get at…

We’re exhausted AND we need breaks… Lots of them!

My two oldest children and I are Autistic. My youngest is a neurodivergent as well and there has been speculation as to whether or not she is Autistic, too. If she is we will know some day, and all in good time. So while all three of my kids and I are very different people we do have one major thing in common…

A need for Decompression

When they get home from school, my kids scatter. From 4:00 – 6:00pm I have the quietest house on the block. They grab a snack and disappear. Their absence is not seen as some form of antisocial rebellion, but exactly for what it is…

Break Time!

And our most favorite break of ALL time… Summer! Summer means many things to us: Sunshine, warm weather and water. We love water and the escape it provides. It offers wonderful contradictions doesn’t it? Water is calming and exciting, relaxing and invigorating. There is both serenity and joy in its sound as it ripples, babbles, splashes and falls. And in its color or lack thereof, and the way it feels on my skin! And while rivers and lakes are gorgeous, waterfalls magnificent and swimming pools divine, there are no words to accurately describe my feeling for…

The ocean.
I love it so much I’m stimming as I write this!

 

My kids and I love the ocean and all that goes along with it. Heat, sun, breezes, hot sand, wet sand, waves crashing on the shore, and most importantly the water itself. While we four love the surf and sand…

My son and I are the fish.

We are the ones that go out into the water and pretend to not hear the others as they call us in for a snack; And then an hour or two later for lunch; And then hours later when it’s time to leave. We cling to each other, smiling conspiratorially, and it’s heaven! It is just the two of us, and the ocean, the pelicans and gulls, and a complete lack of conversation. My non-speaking 11 year-old son, who rarely says a word – talking is extremely difficult for him and he types to communicate – leans in and whispers excitedly:

“Ocean fish”
yes, I reply to a phrase most wouldn’t understand if they heard him say it
 
“Ocean crab”
yes!
 
“Ocean dolphin!” more excitedly as we watch a pair swim by.
Yes! Yes! I match his excitement. With the ocean comes an ease of speech my son almost never enjoys.
 
“Ocean shark?” he whispers with a wide-eyed grin
Yes…. NO! I reply as he giggles.

Voices are calling to us from shore, barely audible over the crashing surf. I look at my son with a gleam in my eye: “Did you hear something?” I ask. His eyes light up with mischief, his grin widens but he shakes his head no. I smile in complicity. Me either, must have been the wind.

               And we break.

                                 And we decompress.

                                                       And we swim in…

SWEET SUMMER

 

 

 

 

#My Writing Process Blog Hop: S.R.Salas | Autism Blog

19 May
May 19, 2014

We’ve done blog hops here before, and if you follow me, you know I always participate (only missed one I think) in the monthly T-21 Blog Hop hosted by Down Wit Dat. Basically a blog hop is a way to share similar posts from other bloggers you might be interested in reading. The #My Writing Process blog hop  is dedicated to sharing different writing processes and we will each do so by answering four questions which you’ll find below.

 

SO, HERE’S WHAT HAPPENED . . .

I was sitting here minding my own business when I received a Facebook message from Cynthia Kim who blogs over at Musings of an Aspie, asking me to participate in a Blog Hop for writers – you can read her post here. By the way, my “sitting here” comment should be expounded upon at this point so you will know what I was actually doing:

Staring blankly out the window trying to decompress.

Assuming a frozen posture hoping to blend into my surroundings chameleon-style, so I might go unnoticed for a time in hopes of quietly relieving myself of the ridiculous amounts of stress and anxiety I incurred during the exciting (overwhelming, over-stimulating) month of April.

For those of you who don’t know Cynthia, all I can say is: Get to know her! When I joined the online Autism Community a year ago, Cynthia, author of “I Think I Might Be Autistic”, became one of my go-to bloggers. I learned more from her about myself than I could begin to explain. She is a lovely human being, an excellent writer and a great teacher. Thank you, Cynthia!

 

WHAT AM I WORKING ON?

Currently I’m working on a parenting book, untitled as yet, and I’m really excited about it. I have been asked several times if I was planning to write a book on the subject, and while it was not the book I had in mind at the time, it is the book I am now writing. Why? Because people are asking for it. I have learned through comments on my blog as well as other social media that many non-Autistic parents are desperate for a better understanding of their Autistic children, but unfortunately many of the resources out there are heavily medicalized.

It seems that while there are many books on autism, there are too few written by actual Autistic parents of Autistic children.

Teaching is something I always hope to accomplish through my work and I have to say I’m always excited to meet parents that go straight to the source - Autistic people! My other writing includes my blog where I write on autism, disability rights, advocacy and the importance of education. And I have also had the good fortune to be a contributing writer to Autism Parenting Magazine as well as Parenting Autistic Children with Love and Acceptance (PACLA) Magazine. Other notable writing opportunities include guest posts for Kate Winslet’s Golden Hat Foundation, Squag.com and Handicap This!

 

HOW DOES MY WORK DIFFER FROM OTHERS IN THE GENRE?

That’s a difficult question to answer. When I consider all of the Autistic writers and bloggers out there, all writing from their unique perspectives, I feel our work differs in many ways. Maybe that’s because my autistic brain is so detail-oriented? But I see so many exciting differences when I read pieces from other Autistic writers so I try to share others’ work as much as possible. I believe we are so very fortunate that when we write, each of our voices is so different – more “teachers” to learn from. So how does mine differ?

I would say because I am an Autistic parent to Autistic children, and also because I am a woman.

I realize I’m not the only one, but we’re told there aren’t as many Autistic women as men out there - that’s what the numbers tell us anyway. Personally I don’t believe that. I think we’re harder to diagnose because assessments don’t properly account for female/male differences, but that’s just my take on it.

 

WHY DO I WRITE WHAT I DO?

My blog originally began as a way to share my experiences in hopes of educating people from my Autistic point of view. Then, after completing the Virginia Board for People with Disabilities – Partners in Policymaking program my inner-advocate was unleashed! Being the parent of 3 disabled children, advocacy is something I have always done, just not so publicly. Adding that component to my writing was a natural progression.

I suppose you could say my blog is an ever-evolving creature that grows and changes with me, as it should.

And just as important as the advocacy, we need to hear more from Autistic people themselves, they’re the real experts. There is so much information out there about Autistic people written by non-Autistic people and that needs to change. On my blog, on Twitter and Facebook, I do what I can to promote other Autistic writers, bloggers, artists, photographers, etc… We need all the “voices” we can get.

 

HOW DOES YOUR WRITING PROCESS WORK?

This question completely threw me because I don’t know that I actually have one. For those of you who don’t know, I’m not a writer… Huh? Okay, I am a writer, but even though I’ve written a book, write for magazines, own a blog and guest blog for others, I had never considered myself a writer. My editor, yes I even have one of those, frustratedly assures me that I am in fact a writer every single time he reads my work. I suppose not going to school or working to become one, and never attempting to write prior to the last couple years led me to believe that I wasn’t a writer when in fact that’s exactly what I am. So being a writer that hadn’t acknowledged it left me completely confused as to even having a process of any kind, because I’d never actually thought about it.

Oh! My writing process. Sorry. Here’s what I do…

I basically pull from past experiences or current observations. I take the idea and sit down and have a conversation with you. I think of my writing as talking to each of you personally, as if we were hanging out and the subject came up. That’s really it. I suppose that’s my process: Writing to you as if we’re visiting with one another.

 

COMING SOON…

Next up on the #My Writing Process Blog Hop are two very special people who I had the pleasure of meeting through Twitter this past year. I have a great deal of respect for them as writers and consider myself lucky to call them friends:

Alex Foreshaw who blogs over at ‘Married with Aspergers’

M. Kelter who blogs over at ‘Invisible Strings’

Please visit their sites to learn more about each of them and make sure to check their blogs next week for their answers to the writing process questions!

 

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

28 Apr
April 28, 2014

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