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#AutismAcceptance: Finding Freedom in Autistic Parenting

Set Them Free

I’ve always loved the saying, “If you love someone, set them free.” I used to relate it to heartbreak, which gives it a tinge of sadness but now, for me, there is another way to see it and that is the way in which I use it for myself as an individual and also a way in which I parent my kids. Not in a literal sense. Let me state clearly that I keep a very close eye on my kids, freedom to run amuck and do as they please is not the type of freedom I’m speaking of. I “set them free” in a more figurative sense, to allow them space to grow into the people they want to become. As a parent to Autistic children, that’s quite a challenge because the word on the street is that our kids shouldn’t be allowed the luxury of that type of freedom.

It’s unfortunate, but more often than not an autism diagnosis and its accompanying paperwork fills a heart with fear, a head with worry over “missed milestones” and “closed windows,” and a calendar with therapies, interventions, support groups, and more.

As an advocate I see parents struggle emotionally and financially to ensure nothing is missed, no stone left unturned, hoping to ensure their child will fit with peers early on, employing whatever therapies necessary to erase as many “behaviors” as possible so their child will not be seen as Autistic. My heart aches for these children and for the pressure their parents must feel to conform to the rigid idea of “normal” that society pushes upon us.

I believe that being Autistic myself has played a key part in my not worrying over what others think about my kids or how I raise them. When it comes to autism, therapy is the buzzword, and I’ll admit we tried a few here and there but in the end decided against.

It seems no one was interested in my kids being themselves, they only wanted them to work really hard to be like someone else’s kids.

That’s not what I wanted for them, and I don’t want my kids growing up thinking they have to stop being who they are naturally so that others will like them. There will always be those who don’t accept them as they are and as I have explained to my kids, those are the people that don’t get to be a part of our lives. It’s their loss, not ours.

 

From Mimic To Autistic

Although I grew up undiagnosed, I didn’t have too many problems fitting in with the crowd and have my older brother to thank for paving that road for me. However, I grew up knowing on the inside that I never really fit in so I just observed and mimicked and found my place in a group that would have me. But as happy as I appeared on the outside, I was sad and miserable on the inside working so hard to fit in and to be someone I didn’t understand or know how to be. For me, the idea of being myself  was scary and it led to years of depression well into adulthood. That’s something I didn’t want my kids to go through. And I know I can’t protect them from everything, nor would I want to because some of our greatest lessons are learned from our hardest falls. That’s part of being free, too, learning how to get back up or to ask for help when you need it. It’s not my job to save them from all the hard times, even as much as I’d like to, but it is my job to arm them with self-knowledge and acceptance so they can help themselves. And wherever they happen to be at any particular moment in their lives, top, bottom, or somewhere in between, I hope they will be in that place knowing who they are instead of trying to be who someone else thinks they should be.

A daunting task when one considers that most therapies for Autistic children are designed to make them appear less like themselves and more like non-autistic children.

My kids and I talk very openly about disability, the positives as well as the negatives because that’s a big part of it: the freedom in speaking openly about autism and other disabilities without shame or embarrassment. We do not work to hide our disabilities, even the invisible ones, because they are part of who we are as individuals. The best I can do is make sure my kids grow up knowing they are loved and accepted just as they are, stimming, scripting, flapping and all!

 

No Super Mom Here:  Being the Mom MY Kids Need

Growing up I knew I was different. It wasn’t until my son was diagnosed with autism that the pieces began to come together. I was diagnosed a short time later and then my oldest daughter after me, and let me say parenting got a heck of a lot easier after that! And it wasn’t the diagnoses of my children that clinched it, it was my own because I finally stopped working myself to the bone observing and mimicking all the other Moms.

I wasn’t worried what these women thought of me I was worried that my kids wouldn’t see me as one of the Super Moms!

When it was just the kids and me I was awesome wherever we were, but when we got in group settings: kids’ birthday parties, school functions, and play dates, I was always in last place (or so I thought). I couldn’t keep up with those women! They were three-ring circus leading, crafting, face-painting, treat-baking dynamos. Holy cow, how could they do it? How could I?! The answer was, without a lot of stress, anxiety and hidden meltdowns, I couldn’t. At home with my kids we found comfort in just being together or in close proximity to one another. We could grab a book or a spot at the computer and keep to ourselves if we wished. It was like a well-run library. Calm, peaceful and orderly we could do! And just like my kids, I didn’t like the crowds or the noise. And until my youngest came along, foisting her imagination on us all, we didn’t see the point in dress-up or crafts or anything else that caused a mess.

Learning I was Autistic helped me see that I am not a bad Mom because I hated doing crafts, dress-up time, and three-ring circus-like events, it helped me see I am a different kind of Mom.

And it just so happens that it is helping my kids have a much calmer more autism-friendly childhood because we do everything within their comfort zone, which luckily for me, looks a lot like my comfort zone. And I am a heroine to them because of it! I always give them the option of whether or not to go to parties or play dates because I didn’t like going to those things. I didn’t want to assume that because they’re children they would automatically love them, or because they are Autistic they would automatically hate them, so the decision is theirs – sometimes we go (yikes!) and sometimes we don’t. Being Autistic and having many of the same characteristics as my kids, such as the need to stim and the need for chunks of lone decompression time, as well as the various needs that go along with having sensory integration disorder, has kept me more in tune with them and headed off many meltdowns before they could get started.

In learning to understand and accept the many differences that come with being an Autistic person and knowing what it was like trying to force myself into a mold I couldn’t possibly fit, I was able to be a better Mom. Loving myself as an Autistic person set me free and I want that same freedom for my kids. I can happily say that for the past 14 years, having allowed my kids the freedom to be their Autistic selves, I have witnessed first-hand their growing confidence and self-acceptance, and a comfort in their own skin that it took me more than three decades to find. It is with much love and admiration for my children and who they are becoming that…

I found freedom in Autistic parenting.

 

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Stubborn Love

When I began this blog more than two years ago I was posting four times a week. For those of you who follow me (thank you, thank you) I have been struggling for some time to post at least once a month. I’ve apologized time and again for leaving you for so long, as the time between my disappearances grew. I promised to fill you in over the coming months as to why my conversations with you have been so few and far between. Please know I do not see this explanation as an obligation. I want you to understand why I’ve been away and how hard I am working to come back, because I cannot possibly express to all of you how much it means to me that you’ve hung in there with me – you are a huge part of what keeps me writing this blog. With that, this is one of the harder pieces I’ve written, and it touches on a very difficult subject that I’ve come to realize I know nothing about. I hope I am able to write it with as much respect as is deserved for the people living it and the families and friends that love them.

 

You Can’t Go Home Again, Or Maybe You Can And Just Don’t Want To?

 you chose this,   you chose this,   you chose this…

 I say this to myself again and again as I try to rationalize why I am where I am. “Renee’s here,” my sister says a bit too loudly I think, as I wait just outside the door of a room I could have never imagined visiting. Ugly rooms like this one don’t exist in real life, just in sad books and depressing movies.

breathe,   breathe,   breathe…

I remind myself but it’s hard, my heart is pounding and my chest is tight. I try to calm myself to stave off a sensory overload-induced meltdown but the incessant blinking and audible hum of the fluorescent lights mixed with harsh chemical smells are making it practically impossible. I stand unmoving in the middle of a theoretically soothing, beige hallway. The striped wallpaper and cheery framed prints I’ve always called “hotel art”, manufactured and sold in bulk I’m sure, are supposed to make me forget where I am. Highly unlikely – I’m in the terminal wing of a convalescent center.

 I want to melt down, I want to cry, and I want to hit something.

I don’t want to be a grown up! Or responsible for anything! And I don’t want to face any music! I’ve never done regret, a useless damaging emotion, and I’m not about to start now. I think I’ve abused myself enough over the last three plus decades. I’m done with that. However, I just traveled six hours to see a man I haven’t spoken to or seen in twelve years, is it possible after all this time that regret urged me to make the journey?

 Good question

 

 The Man

At one time I likened him to a distant uncle. As time passed he became more like a friend of the family. When things got really bad he became more of a long-distance dictator that I avoided whenever possible. And when it was finally over, he became a distant memory I tried to forget, visiting me in my thoughts now and again with a pungent bouquet, overripe with guilt and sadness. But he isn’t any of those things now, and he never was.

 He’s my Father.

There is no fair way to share our history or why our final falling out twelve years ago stuck, because my telling of it would be one-sided. There are two sides to this and because I don’t know what he thought or how he felt about everything, it would be only my account. How about this: We were both at fault and neither one of us made a true effort to work things out.

So why am I here? Why did I come to see him after all this time? Rhetorical questions I could answer a hundred ways I suppose: Because my stepmom thought it was a good idea; so I could support my sister; to apologize; to say goodbye; because I didn’t want to regret not coming? All of these things? None of them?? I don’t know exactly why I came, but I’m here now.

“It’s better to feel pain, than nothing at all. 

The opposite of love’s indifference…”  

-  Stubborn Love by The Lumineers

 

One Thing Is For Certain… Everything Ends

My father, after having several strokes, a couple bad falls and finally brain surgery, is in the final stages of dementia. I’ve heard some people live for several years, a decade even, after being diagnosed. It’s been hard on him and his wife, and on my sister and brother. They’ve watched his health decline and memory fade at the devastatingly rapid pace of just a few short months. I’ve been absent. We talked about it through email and over the phone but it’s not the same.

 They are the ones living the reality of watching someone they love lose the fight for life right before their very eyes.

It’s a waiting room, that’s what I call it anyway. My father is in a room where “the staff” waits for him to die. Like I said, it’s an ugly room. After I pulled myself together and went in, I sat next to my sister and we listened while he lay in his bed and talked on for close to three hours. Sometimes he spoke to her and sometimes to me, not as if he knew who we were, but because we happened to be sitting there. Most of the time, however, he spoke to no one in particular and mainly to people who were not present. I didn’t know what to expect, or whether to expect anything at all. It had been so long, so many years since I’d seen him. The ex-football player and weight lifter now lay in a railed bed too weak to sit up. He cannot walk nor can he use a wheelchair, and he cannot leave his bed.

Once quick-witted and sharp as a tack, I saw no indication that he recognized his own children.

He yelled at someone named “Jack”, then told “Chico” to get a move on, all the while playing with some sort of mechanical blue box with a cord the nurses must have deactivated so he could toy with it, keeping his fidgety hands busy. I sat at his bedside with my sister, and we listened. We talked to him for a bit and I looked at old photo albums left in his room in a heart-breaking attempt to connect, or to spark a memory, I guess. My Father didn’t seem to recognize me, and maybe it was better that way. I don’t know, I was just hoping that he was happy to have visitors.

He was caught up in his delusions and appeared content in his hallucinations.

Most of the time I felt he didn’t realize we were there. I say felt because I don’t know exactly what occurs in the final stage of dementia, and honestly I wouldn’t trust any reports that came from anyone other than the person experiencing it. In my advocacy work, I’ve seen way too many incorrect assumptions from non-autistic “experts” about how we Autistic people think, feel and experience the world to believe someone when they report how someone else experiences something. It’s guessing. What if in dementia there is the body/mind disconnect that some Autistic people experience? What if people with dementia are not completely unaware of who we are and why we’re there? What if their body just won’t allow them to communicate how aware they truly are?

I don’t have those answers and I don’t expect them anytime soon. But assuming someone is incompetent or that their mind has failed them is not a mistake I’m willing to make.

All I know is that I didn’t want to leave his room, not yet. I don’t know what I was waiting for. I knew there would be no apologies, no forgiveness for the years we lost and I didn’t want or need either. I know I would have apologized all day long if it would have in any way comforted him, and I would have meant every word of it, too. After mere minutes, I knew we weren’t going to go there. It was too late for that. So why stay all those hours? I don’t know, I think I couldn’t stand the thought of him being alone in that awful room, estranged or not, no one should have to be in that room alone.

I don’t know. I don’t know. I don’t know. How many times can I say, “I don’t know” in one post?

I thought I knew a decent amount about dementia from my neuroscience studies and different accounts from friends who had parents and grandparents in various stages. When I sat across from my father I had one of those “a-ha” moments. You know the ones where you think to yourself: Ah ha! I don’t know shit. Please excuse the bitterness, but the feeling that came over me sitting in that chair is that no one knows what dementia feels like unless they’re experiencing it themselves. Some of the articles I read and the very personal stories from family members that I am very thankful for, were all very helpful in understanding the symptoms and stages of the disorder and what dementia does to loved ones, but…

looking at my father I realized after everything I’d read and heard, I had no earthly idea what he was going through, and neither did anyone else.

 

A Friend Once Told Me You Can Love Someone Even If You Don’t Like Them

As I sat thinking to myself on the matter, my father in the middle of yet another monologue, suddenly stopped talking and looked right at me. He stared for a moment then winked, something he used to do when I was a child. It had always been his way of saying, “I see you, baby duck.” That’s what he used to call me when I was little: baby duck.

When I was his baby duck he wasn’t my Father… he was my Dad.

A shadow of a smile touched his lips. Practically impossible for him I’m told because of his many strokes and the brain surgery from which he never fully recovered. My heart stopped, “You look just like your sister,” he said. And just as soon as my Dad appeared, he was gone and I was undone. I was little again and it was one of those tiny bits of heaven I remembered from childhood. I pushed aside the hurt and anger and looked at my father for the first time, not as someone I couldn’t get along with, not as someone who blamed me for things that I blamed him right back for, but as a parent, something I could relate to. When I looked at him in that light,

I had to believe he loved me in his way, just as I had always loved him in mine.

Stubborn Love.

I don’t know what it was, delusions of my own perhaps, but for the first time in decades I felt he really saw me and for the first time in my life I truly saw him: A human being, a Dad, a parent that made mistakes - now that’s something I can relate to. I can’t say for certain what it was but something changed. In that brief moment of recognition I felt supported in the decision I’d made years ago to just let go. The hurt, the anger and the blame, there  had never been any reason to hold onto those things and I had been right to let them go. Remaining silent on the subject until now might not have been the best decision, although I can’t say I’m sorry for my silence so maybe for the two of us it was exactly the right decision. Stubborn Love.

Maybe he’d forgotten our falling out or maybe it was his way of saying he forgave me? That in the grand scheme of things life is way too short or too important, especially in the end, to waste even a second. I feel pretty sure that those are actually my thoughts and feelings because I have no way of knowing what he was thinking and he had no way to tell me. I’m willing to believe that it was my brain’s way of telling my heart what it wanted to hear. In essence, it was me projecting my hopes onto his actions and thinking to myself that maybe, just maybe, he fought for a moment of clarity to give me a sign when words failed him, to let me know that everything was ok and it always had been. Because that’s what parents do for kids, they let them know that everything is going to be alright. That’s what I like to think, anyway.

“Oh, nothing lasts forever

But the sound of love astounds me every time that it calls…”

-  Wonderful Unknown by Ingrid Michaelson

 

No Regrets

So do I feel that regret played a part in my going? That I regretted what happened between us? No. I’m sorry that it happened, but I don’t regret it. It is a part of our history and a part of who we are as people. We had time to make amends, but for our own personal reasons, we chose not to. Stubborn Love. I think we were to each other all we could be, and that’s ok. It has to be.

In the end, I’m glad I went. I hope that in the moment(s) he recognized me that it made him happy to see me after all these years. I can honestly say I was happy to see him. I don’t know that my visit did anything for him, but it did something for me. It helped me discover yet another facet of life and more about what it means to live it…

Another experience to help me see life for the brilliantly beautiful and deeply flawed gem that it is.

To help me understand that the flaws aren’t always bad, and they’re a part of what makes each life unique. The flaws help us remember that we’re imperfect and we make mistakes, just like my father and I had. When things like this come upon us, when a life comes to an end, the reality that there are no “do-overs” becomes concrete. Some flaws we’re born with and others, like the relationship between my father and I, are like scars we earn in battle that we must learn from so we (hopefully) won’t repeat them. What happened between us is part of the past and because it is too late for us, it cannot be undone.

But like a scar it serves as a reminder to me that I need to be more willing to ask for forgiveness and just as willing to forgive.

 

 

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On Being A MOM | 2015 Day of Mourning #DDoM2015

“Mourn for the dead, fight like Hell for the living” – Mary Harris “Mother” Jones

I was asked to write a piece for the Bay Area Day of Mourning 2015,  one of many vigil sites for the 2015 Day of Mourning:  “In the past five years, over seventy people with disabilities have been murdered by their parents.” – via the Autistic Self Advocacy Network (ASAN).  For more information on the Day of Mourning and how it came about, please read On Our Backs, We Will Carry Them, written by Ari Ne’eman, President, ASAN.  

First, My Apologies…

This is the first time I have publicly shared my thoughts on the tragic deaths of so many members of our disabled community, and for that I must apologize because every single life we lost was precious. You might be wondering why, speculating on my silence: Is she not affected? Is it ‘not her area’ of advocacy work? Does it not touch her? It’s none of those, because those things would be easy. I have not spoken out publicly before because I am an empath. To say that news of these senseless deaths sickens me and saddens me to the core of my being would be a massive understatement. If a soul can bleed, mine bleeds for every single murder victim. And it doesn’t bleed because I am an advocate it bleeds because…

I am a Mom.

And before we go on let me say that I am not an autism Mom. I am also not a ‘special needs’ Mom and I am not a warrior Mom. I find these titles patronizing, almost as patronizing as being commended on how strong I am for raising disabled children. While I’m sure it’s well meant, please do not demean my kids by telling me how strong I am for parenting them, good intentions aside it’s not a compliment. I rather like to believe that all Moms are strong no matter what kids they have, and leave it at that. And Dads, please do not feel left out, your strength and support are not in question, however, I can only write this piece speaking as a Mom.

Parenting Disabled Kids

There is no greater gift than a child and no harder or more rewarding job than being a Mom and for that I don’t distinguish between Moms of disabled or non-disabled children. Being a Mom is work. Period. For me personally, having disabled children hasn’t made being a Mom harder. I would, however, like to point out that our openly ableist society, legal discrimination, and the many systems put in place for our benefit actually make things a hell of a lot harder on our family. Spotlight please, on the fact that in 2011 my son was still segregated from non-disabled children in a self-contained classroom with no communication device, until I eventually pulled him out. And I’m not downplaying the fact that the needs of some children greatly outweigh the needs of others. There are four disabled people in my family and if there is one thing I know for sure, it is that needs are as individual as people. For instance, in my immediate family there is…

ADD • Anxiety • Auditory Processing Disorder • Autism • Depression • Dysgraphia • Dyslexia • Eating Disorders • Hyperlexia • Insomnia • Learning Disabilities • Meltdowns • A Non-Speaker • OCD • Physical Disabilities • Prosopagnosia (face-blindness) • Receptive Expressive Language disorder • SIB (self-injurious behavior) • Sensory Integration Disorder • Synesthesia • Visual Processing Disorder 

… and our needs vary greatly. Have I shared these things to show how hard we have it? Nope. Or maybe because they define who we are? No way.  Is it perhaps to elicit sympathy? Absolutely not. I’ve shared these things hoping to impress upon those of you who are not disabled that we, for the most part, live our lives like many of you: family, friends, school, work, activities, etc… Our challenges are as different as our needs, but supporting one another can go a long way.

Is daily life unbearable?

Anyone’s life can be unbearable, however, it is a term I often hear thrown around when people talk about people with disabilities. The pity, not empathy mind you but pity, from a non-disabled person about how hard it must be, and how living with us must be unbearable. That’s the fun in invisible disabilities, people talk about how devastating autism is right to my face and have no idea they’re speaking to an Autistic person who also has Autistic children… Oops. So is it unbearable? No. Definitely not a term I would use to describe my family members. Most of the difficulties we encounter are due to how we are treated by non-disabled people and the systems put in place to help us. Are we unbearable? I’m not, or so I’m led to believe, and speaking as a Mom raising three disabled kids: Not. Even. Close.

My kids are the joy of my life.

We Love Living

Because of our disabilities some things are harder but we are not miserable, pitiful people in desperate need of fixing or curing. We are not burdens and to those who assume we must be, I strongly suggest consulting other sources, such as actual disabled people, to obtain information. We blog, we are on social media and the knowledge is free. In opposition to what mainstream media will have you believe, we’re cool with who we are. As a matter of fact,

We love our lives and we love living.

So where is my burdensome story of pity and tragedy, you may ask. Where on my blog can you find the ranting and lamenting, the part where I cry out: “Why me?! Why my kids?!!” You won’t find it because it’s not there. My kids and I are not the sum of our disabilities or our challenges, but both are very much a part of who we are as human beings. Do we need help? Accommodations? Yes, we do. Do we consider ourselves burdens? No, because we belong to communities both personal and professional that show us by word and action that we are not, and anyone who sees us as burdensome is not welcome in our circles. I’m not here to paint a picture of perfection or how very easy things are.

While disabilities can make things more difficult they do not make us less than non-disabled people.

And I believe that, it’s why I advocate. And I tell myself that deep down our society believes it, too, it’s just really busy and forgets from time to time but when something happens, when a crime is committed against one of us, our society will stand by our side and fight the injustice with us! And then… I wake up.

If we are truly not seen as less, can someone explain to me why the murder of disabled children and adults by their parents or caregivers elicits sympathy for the murderers?

It’s the question that eats at us – well, it eats at the people in the disabled community, anyway. While I have been silent on the murder or attempted murder of each and every person, I have been paying attention. I cannot read the stories in full, I cannot share them, and to call these murders a trigger would be so much less than what they are. They tear my heart to pieces. If we are not living in an ableist society and disabled lives are just as important as non-disabled lives, why are their killers sympathized with?

Why are the murdered children, the victims of these horrendous crimes, painted as burdens considered better off dead?

The poor parents, it was so hard for them, they finally broke. That sentiment, the idea that we are being put out of our misery - that abusive and abelistic way of thinking - belittles my kids, and me, and every single disabled person on this planet and puts us all at greater risk.

That very way of thinking is what makes disabled lives less valued by our society.

Families need assistance. We need more services and better supports, no arguing that. Parents with disabled children are fighting an uphill battle and tension is high, because getting those supports is not easy and at times, impossible. We are fighting insurance companies, medical establishments, educational institutions and antiquated systems just to ensure that our kids are accommodated and afforded the same rights and opportunities as their non-disabled peers, and it’s unfair and infuriating because more often than not, our kids won’t get them.

BUT, no matter how hard the struggle is, or how much it beats us up or tears us down…

the fault will NEVER be our child’s.

Poor Me? Not Hardly.

As a Mom I have endured sleepless nights – many, many sleepless nights - whether it was a virus, a midnight run to the ER, a meltdown or insomnia. And you know what? I signed on for every single one of those things and more when I decided to become a Mom because the truth is not one of us knows what we’re getting.

The “normal child” we’ve all heard so much about is a myth. There’s no such thing.

This man-made goal of normalcy, constructed by a society hell-bent on fixes and cures, is the milestone we will never reach because we are judged “less than” right out of the gate. Normal is the lie that threatens disabled people and is supported every time leniency is shown towards their murderers. What I think is at work here is a bad idea. A very wrong and poisonous idea that maybe, just maybe, disabled children are less lovable, less valuable to their parents. That we don’t connect fully with our disabled children like parents of non-disabled children do because there is a belief that our connections are less somehow. I’ve read in a number of places that Autistic people, for instance, don’t make meaningful connections, that we are unreachable, and unlike real people…

“You have a person in a physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense,” the late Ivar Lovaas, a UCLA researcher, said in a 1974 interview with Psychology Today.

Unfortunately, things cannot be unsaid. Because of this, these damaging lies still circulate and people readily accept them as truth because some “expert” with an M.D. or a PhD attached to their name said it. Sadly, many parents of Autistic children buy into it and have preconceived notions of what their relationship with their child will be like:

Unloving. Uncaring. Unaffectionate.

Funny how parents of non-disabled children don’t seem to look to the experts or the media to know whether or not they’re going to be able to connect with their children. Because this sort of misinformation continues to circulate, our experiences are automatically lessened by the non-disabled. And I’m not just willing to believe it I’ve seen it happen again and again. Our experiences are ignored or silenced altogether by the people who talk over us. They’re much more likely to be listened to because they’re considered credible due to their status as non-disabled.

Our society treats disabled people as throw-aways, so why would the idea that our connection to our children being less than other parents surprise anyone? And that’s what scares me, this notion that we don’t feel or that we can’t connect. It’s wrong and it’s harmful, and it is ignorance in all its glory.

  • My 14 year-old daughter, brimming with academic brilliance has difficulty understanding most social interactions, and verbalizing and expressing herself. But when she comes to me and lays her head on my shoulder, no words spoken, I feel Love emanating from every pore.
  •  My non-speaking son will be 12 years-old in three weeks. And not once in those twelve years have we ever had a conversation, spoken or typed. He has never even called me Mom. But every time he looks at me I feel Love because no one looks at me like that.
  • And my 8 year-old, my little empath who struggles with emotions, social misunderstandings and learning disabilities, when she runs to me and throws her arms around me and buries her face in my neck, I feel Love in every breath.

My connection with my kids and their connection with me is no less than anyone else’s because we’re disabled, and for me, because they’re my kids it’s stronger.

You Don’t Know What It’s Like…

I hear that a lot, too, and I whole-heartedly agree. No one knows what it’s like to live someone else’s life, we can only listen and learn. Unfortunately, it seems only one side of the story is getting airtime, and it’s a scary story. The media loves nothing more than cashing in on a headline that grabs attention, and what better way to do it than broadcasting personal tragedy and heartbreak. So it sells a hellish story of suffering parents that barely mentions anything of the child whose life was taken, except to assure everyone that child’s life was horrible.

These stories propagate the falsehood that being disabled is a lifelong sentence of pain and suffering for all of us, and media outlets are happy to serve it up.

The problem is not all families or carers are like that and it has been my experience that most are not. We’re part of a huge community made up of families and friends, advocates, activists and allies, and organizations that support us and we’re working together to help people see disability in a different light. Where are our stories? If you dig deep and look in the right places online, you can find us. There are so many! But we’re not mainstream news because we live regular lives, much like non-disabled people I’m thinking. No news here folks. Where’s the tragedy? Where’s the horror? Where’s the burdensome life made barely tolerable?!!

 We have been sold the lie that disabled lives are tragic lives and to care for them is a burden.

Publicly sympathizing with parents merely because they have disabled children greatly harms all people with disabilities. It frightens me because people see it as a reason to excuse a murderer: They were bogged down with such an unbelievable burden and they finally snapped. Can you blame them? I can’t imagine raising a child like that.

 A child like that.

Anyone who says they can’t imagine raising a child like that is making an assumption that leads to ideas that scare the hell out of me. With no more knowledge than a three-minute sound bite, they have decided which children have value and which are worthless. Whose lives are best not lived.

We are long overdue for a drastic shift in thinking.

This idea that our lives are less valuable than non-disabled people is allowing murderers to get away with crimes that would be considered heinous had their victim, their child, not been disabled. If you are a non-disabled person and if you are not the parent or carer of a disabled child, please listen: Our children are wonderful, loving human beings. Their lives are precious and we adore them just as you do your non-disabled children. We would no more take our child’s life than you would yours. Please, take a moment and let that sink in:

We would no more take our child’s life than you would yours.

The reality is that when we become parents we become guardians entrusted with the precious gift of human life to care for and protect. From the very beginning, as it should be, our children look to us for unconditional love and acceptance no matter what. So for me it’s not about being a Mom to disabled kids, or about being a disabled Mom. For me it’s about…

Being a MOM. . . Period.

 

 

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Image courtesy of the fabulous organization, Parenting Autistic Children with Love and Acceptance (PACLA)

Why Acceptance Is So Damned Hard

* Image: “Change the world Not your Autistic child” via the awesome Parenting Autistic Children with Love and Acceptance (PACLA).  If you are not familiar with PACLA, get familiar with them!

 

Forgive my absence, but the end of 2014/ beginning of 2015 has been difficult and I am sure you and I will visit these things over the next year. However, rest assured I am slowly working my way back to all of you. The following post is quite long (you know how I am) and addresses something that has been on my mind for quite some time. And while it’s difficult for me to think on, and possibly controversial to some, I need to talk to you about it. With that, I’m dedicating this piece to my fellow disability rights advocates and activists for your selfless hard work and dedication. I am honored to know you and work along side you…

“We may encounter many defeats but we must not be defeated.”– Dr. Maya Angelou

To support this piece and with the utmost respect, I have included several quotes from Dr. Maya Angelou, a brilliant writer and advocate, whom we sadly lost in 2014.

 

So… Why Is Acceptance So Damned Hard?

I talk about acceptance all the time. It generally shows up in my posts at least once or twice per, reason being it’s a really big deal to me. And if there’s one thing that’s been made concrete since I started this blog in 2012, it is that some folks don’t like the idea…

 Seriously.

Some treat the idea of acceptance as if it’s a bad thing and that parents of Autistic children, and disabled people themselves who advocate for acceptance, have given up. As if acceptance itself is the easy way out and we took it because we didn’t have the backbone to stick it out and fight. I cannot tell you how many times I have witnessed fellow advocates trying to explain that acceptance was an unexpected surprise, a treasure discovered at the end of a long, hard journey, not something they succumbed to or a last resort. So here’s what I’m feeling…

If I want acceptance for myself, as I am, and for my kids as they are then essentially it is believed that I’ve given up.

For those who roll their eyes at my advocacy for acceptance for Autistic (all disabled) people as we are, and for those who verbally attack self-advocates, the parents who advocate for their children, and allies advocating for friends and many times, complete strangers,

Please… Listen.

I’m not finger-pointing, preaching or shaming, because I don’t work that way, and who the hell would listen to me if I did? I believe in educating. But before I can do that I am asking kindly: Please explain why my kids, my friends and I, are shamed for accepting ourselves as we are. For accepting that some things not only can’t be changed, but don’t need to be…

“It is time for parents to teach young people early on that in diversity there is beauty and there is strength.” – Dr. Maya Angelou

I want to know what goes through the mind of someone who tries to tell people they are wrong for loving their imperfect selves, their imperfect children and the countless imperfect people they support in their advocacy,

             Because we’re all imperfect, even the so-called “normal” non-disabled folk.

Acceptance is not the easy road. I have seen more of my friends verbally attacked,  shamed, silenced, laughed at, trolled and bullied merely for loving themselves and their children just as they are, disabilities and all.

Acceptance is the Hard Way

It’s hard because of the misinformation – generally via non-disabled people/sources – out there working against us: Misinformation from helpful organizations who claim they advocate on our behalf, which they do not and I talked about that here; Professionals and educators who in 2015 still adhere to the Medical Model of Disability (the idea that disability is a problem located solely within the person. It focuses on individual deficit and thus sees disability as something to be fixed or cured) The ones who refuse to see anything but deficits, and who refuse to listen to Autistic people and what we have to say. The very same professionals and educators who confidently tell others what we need because we couldn’t possibly know ourselves… because we’re Autistic (*sigh*). You see, most people don’t even know there is another way to see disability. And there is, and it’s brilliant:

Social Model of Disability

The Social Model is based on the idea that disability is socially constructed rather than a part of the person. A distinction is made between impairment and disability with an impairment being any physical, sensory or cognitive limitation. Disability on the other hand is the way society constructs the individual as a problem based on the perceived understanding of impairment. So a person not being able to walk is only made problematic by the fact that we have built a world that is inaccessible to wheelchairs. Therefore disability is the result of the environment rather than something within the individual.  – Both Medical and Social Model definitions via Dr. Gregg D. Beratan

Unfortunately, the Social Model hasn’t yet gained as much attention as it should - we’re working on it - and because of that, the Medical Model assures society that because we are disabled happiness with ourselves just the way we are is an impossibility. I mean, Autistic people can’t be happy and if we are then we are not Autistic enough, (Judy Endow addresses that here). However, if we are considered by non-disabled people to be Autistic enough (Amy Sequenzia nails that here), then we can’t possibly know any better (*sigh*). So many times it seems we face Lose/Lose situations, yet we stand strong in our convictions and continue to advocate. Against all of the:

challenges • obstacles • inaccessibility • discrimination • marginalization • victimization • pity • grief • oppression • prejudice • fear • ignorance…

We Accept Ourselves and Each Other.

Is It Asking So Much?

No, it’s not. Those of us who accept ourselves as we are, are able to do so because we’ve found community, and within that community made up of family, friends and allies, we’ve found acceptance for who we are as human beings. We understand that being disabled doesn’t mean we are “less than” or that we should expect a lesser quality of life than non-disabled people. It seems to elude those who claim that we’ve given up that acceptance for most is an uphill battle…

Given up?

Given up?!!

If one considers advocating, writing, blogging, public speaking, protesting, testifying, educating, tweeting, Facebook(ing) and so on, for hours on end giving up, then I guess… that’s what we’ve done?

Not hardly.

What I wish detractors could see, especially the parents of disabled children, is what we are actually doing. While I am a self-advocate I don’t advocate solely for myself and my kids, but for all disabled people. And I mainly do what I do to educate in the now, to hopefully change minds and alter perceptions so people begin to see beautifully flawed, whole human beings, not living deficits.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” – Dr. Maya Angelou

I’m hoping my advocacy  for acceptance is working for the children, including those whose parents are angered by my advocacy now. For many, their children are young and I’m guessing they haven’t quite wrapped their heads around the idea that one day, their child will be an Autistic adult…And very possibly advocating like we do now. How will these parents feel when their now-grown children want acceptance? When all of the therapies didn’t change them (or worse… Did) and they’re just as Autistic as they were on the day they were born. And, by their standards, maybe some of the therapy worked and their children appear less autistic, or maybe therapies didn’t work. Either way let’s say these young adults have decided they want to be accepted as they are. What if they want to become advocates? What if they have found a community that accepts them and has helped them love who they are (that’s how it happened for me), and are no longer willing to “pass?” They might even advocate against therapies designed to make them look less autistic. It happens. Many of the young adults I advocate with are doing that very thing. So then what?

So then their children will be where I and other disabled people are now:

Advocating for acceptance and inclusion in society, and being reprimanded and bullied for their advocacy by the same type of parents who will tell them again and again that they don’t know what they’re talking about. That they don’t know how hard it is…

Like what we advocates are experiencing now.

I have a couple questions for those who try to silence us and disregard our advocacy:

  1. How will you feel when you see your child being silenced by others as if what they say doesn’t matter?
  2. How will you feel when your child, speaking (typing, signing) from personal experience and wanting to educate, is told he or she can’t possibly know what they’re talking about? 

That’s the one that really gets to me: Anyone that would purport to tell a disabled person that, in regards to disabilities, they don’t know what they’re talking about.

Acceptance means giving up?

Again… Not hardly.

Out of Love

I don’t for one second believe all of these folks are purposefully undermining our advocacy. Just as I don’t believe there is always malicious intent (trolling not included). I believe many are frightened. Like the rest of us, they love their children so very much and they fear for their futures and want to protect them…

I’m there. I get it.

But we have a choice to make. We can jump on the Medical Model freight train and treat our children as if they’re broken as we robotically nod our heads and do what we’re told by professionals focused on fixes rather than our children. And we can do this without question, bending and forcing them into a mold they can’t possibly fit, never once questioning what it is they want.  And as we do this, we can watch as our words and actions, work to undermine our children making them believe they are broken and eliminating any possibility of success through their own self-determination.  Or we can advocate for acceptance and nothing less…

Nothing will protect our children better than a society that accepts them for who they are.

Advocacy Kicks Ass

Please tell me, are people under the impression that I want to be at my laptop blogging away, asking again and again for my children to be seen as whole? To please, please see that my kids, too, can be productive members of society if they’re included? Every parent’s dream, right?

Blogging is great and advocacy kicks ass and I’d be lying if I said I didn’t love both.

My topic of choice, at times, leaves much to be desired and not because it’s not worthy. Disability rights activism is awesome but you see, my job in essence is to reach out to human beings and ask them to accept other human beings who, through mainstream media, unreliable reporting and fear-mongering  are found to be unacceptable. I have friends, people I have grown to know and love, called “less than human” because they are disabled. So while I love advocating, and have committed a good portion of my life to it, there’s this little voice inside I try to talk over that whispers a painful truth:

Advocating for acceptance hurts, and… It. Is. HARD.

It hurts to think (know) for instance that because my kids are disabled, I have to ask society to include them while their non-disabled peers are accepted automatically. I’m basically asked to prove that my kids count. We have been taught through segregation, seclusion and self-contained classrooms that our children are not equal.

“Prejudice is a burden that confuses the past, threatens the future and renders the present inaccessible.” – Dr. Maya Angelou

We have been taught that disabled people are miserable, unfortunate individuals that want and need our pity. I know I grew up thinking those things and talked about it here and here. Because of these things, I don’t believe that all of the parents I see fighting acceptance or trying to silence our advocacy efforts are doing it out of hate, they’re doing it because they don’t know, just like I didn’t.

They don’t understand that when they walk for cures, or open their wallets to finance autism prevention, they are actually advocating AGAINST their very own children.

The very organizations they hand their hard-earned money over to, and that are supposed to be advocating for us (the ones that take money from the disabled community to finance their mission, which seems to focus on eradicating our neurology) are working against disabled people. And they prey upon frightened, well-meaning parents, depending on them to help finance it. They take our neurology and use it to fund research for elimination of our people.

Parents are told by professionals to fight their children’s neurology, scared into employing as many early interventions, trainings and therapies as possible to “fix” their children. Then large charitable organizations swoop in and support these parents by fueling their fears…

So we fight for acceptance against the tidal wave of ignorance that works to drown out our advocacy by telling society we are less than they.

Acceptance as a Road to Peace

It really can be and many of us have found it. We have found the love in acceptance and through that acceptance, peace. It’s why we continue to advocate even as others tear us down. So, can I ask you to think on it? Please? Can I ask you to consider that acceptance just might be a way to find your peace? Will you be strong and stand against those who say your child is less? Will you join us not only for your child, but also for the children of parents who aren’t strong enough yet, because I truly believe one day they will be…

Acceptance takes time,

It’s an uphill battle

And it’s hard.

And your child, every child, deserves it.

* * * * *

Awesome organizations that support Acceptance:

ASAN (Autistic Self-Advocacy Network)

AWN (Autism Women’s Network)

Boycott Autism Speaks

Ollibean

Parenting Autistic Children with Love and Acceptance (PACLA)

Squag

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Learning to be Autistic

Philly Pride

“Autism Pride” sidewalk art courtesy of Leah Kelley of Thirty Days of Autism and Bella while we were in Philly last Spring! 

Learning to be Autistic

That sounds funny, doesn’t it? I hear all the time about people learning to NOT be Autistic (i.e. being forced through therapies to not “behave” autistically). I’ve yet to hear about anyone actually wanting to learn how to be Autistic. 

So what does it mean?

Last week my friend Cynthia who blogs over at Musings of an Aspie wrote a great piece, At the Intersection of Gender and Autism – Part I. I read it and found myself nodding in agreement through much of the post, especially at this:

“Knowing that I’m autistic has helped me to reconcile so many confusing aspects of my life. It’s as if I’m slowly reassembling the pieces of myself.”  –  Cynthia Kim

I tweeted Cynthia’s post and got this response from a Twitter follower: “This is brilliant, esp about learning to be autistic. Well written.” At first I wasn’t sure how to take it: “…learning to be Autistic”? Was she being sarcastic? She did add the “Well written” part, so I didn’t think so, but responses on social media can be confusing to me and I’m not always sure how to take them. I thought on it for a bit and I realized what I believe she was trying to say or at least what I came away with, and that was this… We spend our entire lives masking, passing, faking, essentially trying to act neurotypically so that by the time we are diagnosed in our late 30s, early 40s, we have to learn (re-learn) how to be Autistic. In essence…

We have to learn how to be ourselves.

I wanted to hug Cynthia after I read her post and I wanted to hug the woman for her response. Yes! Learning (re-learning)! They’re right! I thought to myself. We have to learn how to be who we truly are, not the person we forced ourselves - or were forced by others - to become so we could pass:

  • Hiding our stims
  • Forcing ourselves to make eye-contact
  • Joining the crowd and enduring parties, sleepovers and other social-gatherings
  • Mimicking others so we knew how to “act right”
  • Hiding our depression behind a well-practiced smile
  • Silently berating ourselves for not fitting in – even if it seemed to others that we did
  • Psychologically abusing ourselves for perceived social, familial and relationship failures
  • Hiding our Self-Injurious Behavior (SIB) – and oh how easily we hid them
  • Eating disorders to try and gain control over some part of our lives because everything else seemed out of control
  • Obsessive Compulsive Disorder (OCD)
  • Hiding meltdowns whenever possible

I self-diagnosed six years ago at 37 and was professionally diagnosed at 39, two years later. J mentioned to me around that time that I acted more autistic than I used to. He questioned whether or not it was because of the diagnosis itself. The answer sprang to mind immediately…

No, I’m not being more autistic now, I’m just not acting neurotypical any longer.

I stim openly, and I may look away from people while they speak and I will script without worry with my kids. I rarely go to social events but no longer feel that nagging guilt when I decline. I don’t beat myself up for not fitting in everywhere because I’ve found a community where I’m always welcome as I am.

So You’re Okay being “Out There”

I am. And that’s a difficult concept for many to comprehend. Why, if I have been passing for so long, would I want to put myself out there for prejudice and discrimination as a disabled person? Wouldn’t it be better to continue hiding who I really am, at least while I’m out in public? NO. Because any abelist comments I endure from ignorant people merely for being myself can’t compare to the…

self-hate • pain • shame • embarrassment • guilt • SIB • frustration • anger • confusion • meltdowns • depression • stress • OCD • self-abuse • eating disorders • feelings of failure and inadequacy

…that I endured for years trying to pass. I learned the hard way after several decades that I would rather love me than please others.

 Disability Pride… Are You Serious?

Oh, hell yes! Disability pride is another reason I don’t pass, and that decision has been strengthened and supported since day one by finally finding and joining the online disabled community. My kids are growing up knowing that they are autistic, what that means to them as well as to how the majority of society perceives them (quite negatively) and why, which I talked about here and here. Our focus is on their strengths, where they excel, so they can take pride in themselves and their accomplishments.

Do we gloss over the difficulties? Absolutely not, we live those, too, every single day.

So we talk about challenges and areas of difficulty, we don’t ignore them, and we figure out what we can do to either strengthen ourselves in those areas, or how to work around them when we can’t. My children do not feel a need to pass and are learning to advocate and ask for accommodations when they need them – not making the mistake of pretending to have everything under control like I did. They speak of disabilities very openly because it’s a part of who they are. They are being taught the Social Model of Disability and how it’s our environment along with people’s attitudes towards disability that disable us. While there are challenges and obstacles, they are not insurmountable. They do not render us incapable, they make us have to figure out other ways to do things so we can be successful. That’s not being incapable, that’s being adaptable. We will figure out how to make things work because, honestly, we don’t have a choice.

Unlike me when I was growing up, my kids don’t feel the need to hide who they are.

I hope they never do, which is why we keep the conversation going. I’m hoping what they learn in childhood will carry over into adulthood. And that it will continue to strengthen their disability pride, and support their decision to not hide their disabilities.

Choices

We have a choice to make… Either we continue to try and pass, and teach our children to do the same, putting them in therapy after therapy so they can “act right,” teaching them by our actions that disability is a bad thing and that we don’t accept them as they are,

And then let them deal with the consequences when they’re older, like many of my friends and I have.

Or we can love them unconditionally, every single bit of them, and teach them about themselves with disability pride: Our children are not broken, they do not need to be fixed. And while we’re at it we must educate them about the wall of societal hate and fear they are up against. That information we cannot keep from them because if they haven’t already encountered it, they will. And it shouldn’t be a story of gloom and doom – don’t scare them! – be honest but allow the conversation to grow and mature as your children do. However you approach it, it’s still a part of the conversation that needs to be addressed so they are able to handle ableism when they encounter it, like my children have.

Life is a work in progress. It’s not easy, we’re not always going to get it right and we’re going to make mistakes again and again. Learning from those mistakes and not making the same ones twice, talking to our kids about successes as well as the things we failed at and why we failed, is a big part of our education and theirs. That is why I am teaching my kids to love themselves as they are, to accept that there are things they will do with ease, and others they’ll not be able to do at all (you know, like every other human being).

When we talk about autism acceptance we usually see passing as a fail.

So Then is Passing Always a Fail?

No, it’s not. Times are changing, acceptance and inclusion, and disability rights as a whole are garnering more attention through major social media outlets. But we’re not “there” yet.  I have friends who continue to pass as non-autistic because of incidences of bullying and job discrimination, and I support them in their decision. I get it, do you? Do you understand why some of our fellow Autists choose to pass? It’s not because they have a problem with being Autistic, or they hate who they are. Far from it. It’s because they fear loss of income or abuse for being themselves. For them…

Passing isn’t about embarrassment or shame, it’s about survival.

While advocates continually chink away at the ignorance surrounding disability, we continue to teach our children that there is no reason to act or pretend to be something they’re not. Will they ever have to pass to get or keep a job? I have no idea, but I truly hope not, it’s why we continue to advocate for acceptance. Speaking in a non-survival context, the need to pass generally serves to make non-disabled people feel more comfortable around us, nothing more. What I tell my kids is this: “You are loved and appreciated, and whole just as you are, and when ignorance rears its ugly head, the person making the ableist comment is the one with the problem, not you.”

My hope for my kids is that they never have to re-learn how to be Autistic because they will have always been cool  BEING  Autistic.

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DCIM100SPORT

Advocacy in HER Words

 

I’m not the type of person who claims to be right all the time (or even half the time), nor do I brag about my accomplishments. Knowing I’m right about something is good enough for me, no need to announce it. However, there are exceptions to most rules, and today it is with much pleasure and an overflowing heart that I must shout to all of you…

I WAS RIGHT!!!

I talked to you over the last couple months about a few things that are very near and dear to me:

My kids   •   Advocacy  •  Acceptance   •   Disability Pride

Actually, I suppose I’ve been talking on those things for almost 2 years now – where does the time go?? – and I always find myself wondering if I’m getting through. Not that anything negative has happened, it’s just that blogging can be difficult because comments are rare so you can spend time wondering: is anyone listening? This isn’t a lecture, no way, not from me. Honestly, I read many blogs that I absolutely love and rarely comment, so I understand and am not offended. However, to counter my feelings of “anybody-out-there?”, something was shared with me the other day, something so powerful that the author of the piece was slightly stunned at my silent tears – I’m not a big crier. Prior to reading the piece, I promised her I wouldn’t comment because, like me, she has a difficult time accepting praise. But the piece she wrote was to me: art, music, poetry… beauty embodied. Because of what I read, I came to a realization…

. . . talking about advocacy and disability rights even when you don’t have a platform or a large audience matters because people are listening.

That’s pretty intense, right: Beauty embodied? What the heck could possibly meet that standard? Well, I’m going to share it with you but first I’m going to tell you why I was right. The last piece I published, Eight… The Magic Number is Eight needs to be read before you continue for this piece to make sense. So please do so, I’ll wait.

*** waiting ***

Great, let’s continue. So you’ll remember in that piece I said this:

” 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! “

This is the part where I get to be right and shout it from the mountain tops…

Below is a piece written by my 14 year-old daughter, Bella, well before I even wrote “Eight…” For those of you who don’t follow this blog, Bella is brilliant. Seriously, I’m not “Momming” up that descriptor. Straight A(s) / A+(s) in every subject. She has already skipped one grade, she’s in 10th now taking AP courses and will be starting pre-Calculus this Spring. Her chemistry teacher asked her after the first day of class if she just wanted to go ahead and take APChemistry instead, and she has been given the green light by her Spanish teacher to go ahead on her own because she was so far ahead of the other Spanish classes she had nothing to do. She is in the 3rd year of a neuroscience mentorship at the College of William & Mary, observes a 400s Level PsychPharm course at the College, and currently wants to be a brain surgeon. She is an autodidact and is teaching herself computer coding (with ease), Japanese and French, is an avid and hyperlexic reader (adores Manga and Stephen King). She’s a self-proclaimed geek, loves technology and is an awesome gamer -- she kicks you know what at video games (Titanfall being one of her favs).

I wonder what it would be like if she put all that hard work and effort into not leaving her shoes all over the house or possibly putting her dishes away… Oh the possibilities!

Kidding aside, Bella is a self-motivated and seriously hard worker but her success comes with the price of little sleep, because her brain rarely allows her to rest and it also doesn’t allow her to easily connect with peers.  It’s a blessing then, academics and work ethic aside, that Bella is not one for the social aspects of life. She is a very solitary soul and shuns socialization whenever possible because for her it tends to be wrought with a lot of frustration, anxiety and overstimulation. She spends most of her time outside of school, happily alone. One of her favorite past times besides research is watching YouTubers: Feminists, Disability and LGBTQIA Rights Activists and Minecraft experts (Shout out to Leah Kelley’s awesome H <3 )! By the way, did I happen to mention…

Bella is proudly AUTISTIC

( Look, I snuck in more disability pride! )

Ok, here’s where I get to the point of this post…

Bella was asked to write a piece for school about someone she admires: celebrity, historical figure, fictional figure, etc… It could be anyone in the world, real or fictitious, the sky’s the limit. When she mentioned the assignment to me I hadn’t the slightest idea who she would choose: Mr. Spock, Hayao Miyazaki, the 10th Doctor (from the show, Doctor Who), Sherlock (Cumberbatch’s version), one of her YouTubers… Who? WHO?!! The suspense was killing me! Who out of billions of people (fictional characters not included) would my daughter choose to write about? Who could possibly meet her standards of excellence? As always, she surprised me. Not in the choice itself because I loved her choice, but in the fact that this 14 year-old could write about “L” from Death Note (an old Manga crush), Stephen Hawking, Stephen King, or Lizzie Velasquez to name a very few of the people she finds excellent. But she didn’t, she chose to write…

 

“A Bit About my Brother

When I was about two or three, I was a little bit strange.

I didn’t have any real friends and was the kid that mainly stayed in my room and had conversations with my four walls.

My parents decided that for my own mental stability, a sibling would be a good idea. My brother was born on March 17th, 2003, and he wasn’t very interesting at first. Then, as he started developing, I noticed he was different. He was perfect. He grew perfect brown hair, had perfect brown eyes, and was the best sibling I could ask for. We would sit in the same room (at opposite sides, of course) and read books for hours.

I wouldn’t talk to him, and he wouldn’t talk to me; it was the ideal relationship.

I remember teaching him how to play video games, and him teaching me computer commands. Now I can say I’m pretty good at using a computer. I also remember how he was the buffer for my anger, specifically my irritation. I remember one time I could not pass a stage in the Barbie and the Magic of Pegasus video game on my Gameboy Advance (SP), and in all my rage, I pushed my brother down. He only seemed mildly irritated at first but walked it off, making me still feel bad even eight years later. I can still say that even now he is by far one of the coolest little brothers I’ve ever seen. Not only is he wickedly intelligent, but he’s pretty modest too.

Sometimes I wish other people could see my brother as I do and see how much he really is worth.

Yeah, he doesn’t talk, but imagine if he did! He would be too busy nagging at me, and would stop being as awesome as he is! I hope Bas never changes, and I hope he stays the intelligent, humble, slightly crazy, and totally awesome self that he is. “

 

 

I don’t want to take away from the beauty, so I’ll end quietly by saying (again):

 “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.”

 

 

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

 

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.

 

 

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PRESS RELEASE: Disability Visibility Project @DisVisibility

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

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On Being An Empath

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.

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AUTISTIC EXPERIENCE Defined… Neurotypically???

 

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

 

 

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Autism, Advocacy, Disability Rights, Inclusion