Wednesday, July 1, 2015

Newsflash: Autistics Are Humans Too!


A few days ago, someone googled "autistic children no human soul" and wound up on my blog. 


Image of text: blogger.com, Search Keyworks, Entry, autistic children no human soul


I've had this kind of thing happen before, though nothing quite this callous. This idea, that Autistic people have no soul, exemplifies the ableism within our society and the kind of prejudice that Autistics face each day. To be a person in a world which views you as soulless, must be a staggering burden. Once again, irony strikes the Autistic community. We apply our own cold hearts to those we deem less. We break wings and then punish those that cannot fly.

It's difficult for me understand why I have to defend my children against such nonsense. This does not get filed under simple ignorance. It takes a really screwed up person to entertain the idea that a group of people are soulless. File it under straight up bigotry. Why do I have to insist that my children are human, when they wear the same skin as the rest of us? Why do they have to prove what's inside? My only answer; it's a whole big screwed up world too.

The neuro-majority, the non-disabled, the privileged, deny the humanity of those they hold below. It is much easier to take advantage of a people, while pretending they aren't actually human beings. It's easier on flimsy morals and might feel good to the ego, but bigotry is bad for the soul. This denial is so intense and encompassing, it allows the majority to make the obvious invisible. My Autistic children are real, living, breathing, human beings. Unbelieved, but definitely true.

Humanity is a birthright.

I'll make it clear and repeat myself until the screwed up world can no longer deny.

Blue and purple textured background reading: Autistic people are human, and if humans have souls, Autistics have 'em too. If this is news to you, examine your own humanity, your own soul. (rasingrebelsouls.blogspot.com)

Friday, June 26, 2015

On the Language of #Epilepsy

The other day while exploring for epilepsy information on the internet, I came across a comment "Don't call me epileptic. I have epilepsy. Epilepsy doesn't have me." I've heard this kind of comment before, though not specifically for epilepsy. Different disabled communities use different language to describe themselves, mainly people first, as in "Heather has epilepsy" or identity first "Heather is epileptic". What ever shall I call myself?

I began my learning of Neurodiversity in relation to Autism and the Autistic rights movement, however, the lessons I have since applied to my own neurodivergence, epilepsy. Autistics, as I have described previously, choose identity first language purposefully. I use Autistic in my writing and with my friends and family, not "person with Autism" out of respect for, and in agreeance with, their choice. I have taught my children that Autistic is a kind of person, not that they have anything. They are Autistic.

Because of this, when I began having seizures again, calling myself epileptic didn't phase me. There is a shamelessness that identity first language proclaims. It is more than the reasoning that Autism is inseparable from the Autistic individual, and therefore using terminology like "with Autism" or "has Autism" conflicts with a person's whole Autistic being. That's a valid justification, but identity first language is a rebellion too.

If our society views Autistic neurology as something that should come secondary, some thing that should not define the person, some thing that's shameful, insisting on being called Autistic anyway is a an act of defiance against those very sentiments. Autistic is a descriptor, not a thing which is less and therefore should be othered. Our neurology is not a thing. Our neurology is our whole person. Claiming the word Autistic in this manner is a refusal to be denied and a very matter of fact statement; I am who I am. So what? 

Of course, these neurotypes are quite different from one another. Epilepsy is a true medical condition, as opposed to Autism which is only falsely portrayed as a medical condition. Epilepsy is dangerous, but no one dies because they are Autistic. A cure for epilepsy would be terrific because of this, where a cure for Autism is insulting and absurd. If I were cured, I would still exist. The same is not true for my Autistic family and friends.

I also have the privilege of walking around life, for the most part, with my disability concealed. No one can see it until it leaves me paralyzed from head to toe. I can, though I haven't, compartmentalize my disability separate from my identity. Apparently, many in my community do this. After all, I've gone years and years without having seizures before. It would be easy to think of myself as Heather, who occasionally has seizures.

Epilepsy has changed me though. Made me. For better and worse, epilepsy is a constant in my life.

I am always at risk,
or at the neurologist office,
or adjusting my medication,
or hooked up to wires,
or hiding from lights,
or teaching my children emergency protocol,
or thinking of ways to keep them safe when I am down,
or wearing a medical bracelet,
or restricted from driving,
or afraid to leave the house,
or vulnerable,
or vigilant,
or worrying about the fact that I could die at any moment,

or actually dying a little bit each time I go down.

Epilepsy shapes me. It makes me do what I do, and think how I think, and live how I live. If my seizures ended today, my life would become more comfortable with time, but I will forever be altered by what has already happened. And what can I do about that? Perhaps in the future, if there ever is a cure, people will go in for some procedure and be done with epilepsy before it defines and describes them. In the meantime, I won't downplay epilepsy's significance in my life or deny my epileptic reality, because I want people to acknowledge that a cure is needed.

Yes, I am more than epilepsy. I am a woman, I am American, I am a writer, a mother, a wife, a friend. No one descriptor could define me fully. Just as Autistic tells you one aspect of the person, epileptic tells you one aspect of my person. I won't pick and choose, or separate my identity according to the assigned shame, then present myself as the goods, with the thing being secondary. Epilepsy is a way of life. My life. I expect and deserve to be accepted, dynamic as we all are, without having to hide my neurology.

My privilege in the greater disabled community, that most people do not realize I am disabled and therefore grant my person more respect, requires me to act boldly in our self defense. When I call myself epileptic, which I decidedly do, I challenge shame. I let the world know, I am not going to sideline an important part of my being, in order to be found more acceptable. Because I am able to prove my competence before people recognize my disability, my voice is given more credence, and my defiance helps other disabled people define themselves shamelessly too. 

I can't help what my brain does and I won't pretend that I am stronger, or separate, or any different than my most disabled moments. The next 72 hours of my life will be spent with electrodes glued to my scull. Then I get to do it all over again next week. It's hard. Epilepsy doesn't have me either though. Epilepsy is me. I am the face. One of 2.2 million epileptics in America, and one of 65 million worldwide. Call me what I am. Shameless, defiant, and even proud. Call me epileptic. So what?


Saturday, June 13, 2015

#Epilepsy and Childbirth


I follow no order.

I am electricity refusing path.

I am madness.

Brilliance.

I am none of the above.


When I was in labor, I had a very strange incident in the hours before I delivered my twins. I had an epidural port placed, unsure whether I would need pain relief and not taking any chances for what could be a difficult birthing process. At some point, it was suggested that I get the anesthesia, or it would be too late. I agreed, though if I had been a better self-advocate at the time, I would have likely opted out. A minute or two after the medication was administered, I became very ill.

At the time, we believed this was somehow caused by the anesthesia. That seemed suspect though, because my symptoms were not a typical reaction to over medication. The doctors and nurses could not pinpoint just exactly what was wrong with me. The many machines I was hooked up to all showed normal findings. Oxygen levels, heart rate, the vital signs of the babies, all good. I now know that what I experienced was a seizure.

My seizures do not appear to be seizures to the untrained eye. It seems as if I am fainting when my blood turns to lead and I am pulled to the floor. I have even been dismissed with -looks like she had one too many- as if I am intoxicated when my brain tricks me with auras and visual distortions. The many machines I was hooked up to during this particular seizure, could not have caught my brain electricity misfiring. The best Doctors in town may not have made the connection. It has taken me years, and loads of other seizures, to recognize it myself.

The sensations I experienced were typical of my seizures. The distinct feeling that something was wrong, visual distortions, paralysis, inability to speak, fading to black, grappling with death all the while, conscious but unable to prove it aside from blinking my eyes. The postictal experiences were the same as well. I threw up and was extremely exhausted for an hour or more. Just as I came to, my Doctors wheeled me into the room for delivery. The babies couldn't wait. I did what I had to do.

I wish there were lessons to learn from epilepsy beyond simply knowing that my brain is dying a bit each time. I suppose I should acknowledge the strength within me it took to go through all that, survive, and have two healthy babies in the end. There has to be some other mother or person who can relate. I hope it brings them the same comfort I feel when meeting people with similar circumstances. None of these things seem enough to balance the brain I've been given.

It's been a long while since I had my last seizure. May time keep putting distance between then and now. I hope the same for all.

Wednesday, June 10, 2015

Terrible Things "Autism Professionals" Say

I just finished reading an excellent essay over at Unstrange Mind titled "S is for Stop Saying Savant Syndrome and Splinter Skills" written by Sparrow Rose Jones. Because my children are twice exceptional, both disabled and gifted, these descriptors have been applied to them by several "therapists" and "autism professionals". One in particular said something that still irritates me to no end. As I described one of my children's strengths in reading she responded with;

"We call those Swiss cheese brains."

This is a terrible thing to say about someone you are supposedly serving. She considered my child's wonderful brain, his wonderful person, as a piece of cheese with holes in it. It was her, the highly skilled "professional", that would fill in these holes and return my child whole. As if she, lacking respect, lacking empathy, and lacking understanding, should have authority over deficits to be addressed. If my children have Swiss cheese brains, you, benevolent "therapist" have a Swiss cheese heart.

I cannot believe I subjected my children to this industry. I regret.

After reflecting on this gross display of ableism in my children's "therapy" experiences, I began thinking of other blatantly ignorant comments we've heard over the years from "autism professionals". This kind of narrow minded thinking is rampant within the "therapy" system aimed at Autistic people. It's unavoidable, and damaging to both the Autistic person and their loved ones.


"A stim is anything that they do over and over that doesn't have any meaning or reason behind it."

No, Autistic people have valid reasons for their actions. Stimming is not only a way to self soothe, it is also a form of self expression. When you eliminate flappy hands, or jumpy legs, or rocking, or toe walking, you are taking away the very things Autistic people need the most. They need to self soothe in a world that was created with them on the bottom. They need to communicate their feelings and thoughts in any way that they can access. Stimming is a dynamic and important aspect of Autistic culture. It's not to be dismissed. 


"Quiet hands."

No, my Autistic children learn more when they are allowed to move their hands and bodies. They also take in information through touching and doing. Teaching them to respect the personal space of others, or to keep their hands to themselves, is very different than seeking to control their movements because it looks Autistic. It's quite alright to express yourself with your hands. It's fine to flap.


"The book I recommend that has the whole picture and everything you need to know, is Age of Autism."

No, Age of Autism is one of the most disgusting and erroneous books written about Autism as is the community of parents, which produced it. My Autistic children aren't diseased, and treating Autistics as such, with miracle "cures" is in fact deadly. Recommending that book is endorsing medical torture.


"You'll get burnt out. You should put them in school."

No, it is actually the therapy and public school wringer we get put through that causes so many parents to become exhausted. Having my children in the public school system, which segregates them from their peers, "helps" them with more repressive therapy, and forces me to fight for the basic accommodations they need, will not revive my spirits. Nor will it benefit my children's education. Predicting our failure is only detrimental.


"Here's your golden ticket to services," (gives me a diagnosis written on prescription paper after spending a total of five minutes with my child).

No, the only service we requested was help in determining whether or not our child is Autistic. The services we already have been offered seem to stress my Autistic children more than helping them. A golden ticket on the trauma-train is no gift. A diagnosis of Autism requires time and expertise, which has clearly not been offered.


"Some sensory kids have selective hearing."

No, selective hearing is a choice. It's something that tired husbands do when they don't want to mow the lawn. My children do not have a choice in the sounds their ears can focus on and process. They actually work really hard to hear others. They do not intentionally ignore, so do not associate their challenges with choice.


"Come back when he is six and we can check if he has developed theory of mind. Then we'll get a better gauge on whether he has Asperger's or not."

No, the evaluation processes designed to diagnose Autism are based on misconceptions. The theory of mind theory is fallacy. This is ironic because those that give validity to these poor assessments, seem unable to imagine the Autistic experience. These "professionals" are only able to project their own flaws onto the Autistic person. No one is willing to learn about how their own minds work from actual Autistics. Extending theory of mind never crosses the mind of the evaluator.


"This school only does soft ABA."

No, we'd rather not treat our children as blank slates to be programmed. We respect the horrid and abusive roots of ABA and how it has harmed the Autistic community. To distort or water down the damaging approach is still unacceptable. Nothing is "soft" enough to erase the history of electric shock with which this "therapy" is founded in. The ends do not justify the means, and the end result in ABA, indistinguishably, withholds the Autistic person's basic rights to self autonomy.


"You know what they used to do. They'd put vinegar in their mouths for saying those things. My mom did it to me with soap. It worked."

No, adversives are abuse. Just because a person learns how to avoid being abused, does not excuse the abuser. We don't get to hurt Autistics and call it help.


"Don't be a cry baby," (One child repeating what a therapist said to the other, through echolalia. I was not there to hear it directly, as the therapists asked me to leave because I was a distraction). 

No, my Autistic children are not cry babies. They are sensitive and were being pushed to do activities that were too much and even painful. They are brave, despite being put in terrifying situations like forced shaving cream "play" and having their bodies controlled by authority figures. Bullying a child is pathetic.


"Your problem is their behavior. They're smart, it's just the behavior."

No, the real problem is that Autism "professionals" seek to eliminate Autistic behaviors, as opposed to understanding the reasons behind them. Behavior, also known as communication, is allowed for typical children, however, it is not good enough for Autistics. Another problem, as is evident in this list of bigoted comments and actions from non-Autistic individuals, is that these "professionals" have some poor behaviors themselves.


"They're not table ready. They aren't ready to learn."

No, the false notion that learning happens behind a desk is ridiculous. My Autistic children learn all kinds of things from how to climb a ladder to how to fly a kite by doing and moving and being free from the confines of a desk. To live is to learn. Sitting down has nothing to do with learning and everything to do with control and power.


"I know you said you are not interested in ABA therapy, but I highly recommend ABA therapy in our clinic."

Thanks for nothing.


Like I said, I regret.




Tuesday, June 9, 2015

Losing Family to Ableism

With a few exceptions, our family and friends have been extremely supportive of our family, our challenges, and our strengths. Upon the realization that my children were Autistic, one loved one called me everyday for weeks, just to listen. Countless times we have been given gifts, which have enabled us to get through tough times financially. Ipads, learning materials, clothes, what ever my children need has been provided. We even had Santa sent to our home one Christmas. We are deeply privileged to have this support system. The exceptions still hurt.

One afternoon, while we were visiting an elder in the family, my Aunt came over to spend time with us as well. My Aunt, who has since passed, was in the late stages of Alzheimer's and was assisted by an aid. We gathered in the living room and had a conversation which played on loop because of this.

My aunt would greet the boys, ask their names and a few other questions, and after a few minutes had gone by, the scenario would begin again. Of course the adults understood what was going on, and why she was repeating herself, but my children were too young to have the slightest clue. One of them could have a basic back and fourth conversation at that time, and one could only respond to "hello". After a few rounds, neither child could respond. It was just too much.

At some point, my Aunt became irritated with their lack of reciprocity, which was understandable given her condition. She asked why they weren't answering her. She asked again the following cycle, and then she was given a response from my elder that crushed me.

"They're deaf".

I reacted impolitely, if it is impolite to defend your children.

To be Deaf is no better or worse than to be Autistic, however, my elder clearly believed that being "deaf" was a more acceptable disability. To them, Autistic undoubtedly meant (and means because little has changed since) intellectually disabled, which my elder deemed more shameful. They could say "deaf" out loud, but not Autistic. The irony, my elder applied a lie, and then another, just to cover their own disgrace. They also disrespected my disabled Aunt by not allowing her the truth.

My children are not Deaf and they are not intellectually disabled. They are Autistic. It doesn't really matter what their disability, much more important is that their acceptance and inclusion should not be dependent on the various levels of shame we as a society apply to differing disabilities. It is wrong to grade and degrade. Shame is only applicable to disability in the throes of prejudice.

Even when society as a whole behaves this way, when they refuse my children a seat in a regular classroom, when they offer them repressive and abusive therapies instead of help, when they un-invite us and straight up exclude us, our loved one's should do right. They should spend time with my children, get to know them, seek understanding, because we are blood and the least we can do is care for our own. My Autistic children are our legacy. They deserve a whole lot of respect for that, just as their elders before them. They deserve love, not shame.

Unfortunately, this was only one incident of many in our experiences with this particular family member, each one crushing, each one putting a world between us. I dread the day my children realize that people, some in our family, will choose to hold onto their ableism instead of offering love and acceptance. It's saddening to know what my elder is missing out on, with a self built wall to keep them from the goodness that is my Autistic children. We lose each other.

Saturday, May 16, 2015

Dreaming Again

One of the saddest things about my initial reaction to my children being Autistic is how I perceived my dreams of the future. I believed what I was told about Autism and I believed my dreams of motherhood were shattered. It did not take me long to figure out that I had been wrong. I was wrong about Autism, and most of those dreams were unfair. They were painful expectations I never had a right to hold. 

I cut those old dreams loose and replaced them with faith in my children and their lives unfolding as they should. It was hard to dream after that. I was afraid my dreams weren't big enough, or maybe they were so small they would hurt me again down the line. Worse would be if they hurt my children. I tried to keep my mind open, expect little, and to be present. Close to my understanding was the Toni Morison quote “If you surrender to the wind you can ride it.” I surrendered to my real life. 

It has been like riding the wind. Where I first was, was low, so low. Waking up to the truth about Autism has been an ascension. Acceptance liberating. Appreciation enlightening. And love, it's the heaviest thing, but I've been lifted by it every time. Lately, the ride seems so free, my motherhood dreams come easier. They've honed in getting closer to reality. They've become fair, both confident in my Autistic children, and open enough to stay afloat. They are achievable now. Wiser. I've become a better dreamer.

Some of the old dreams, the ones that weren't unreasonable expectations, have managed to live on too. A while back I got to read Stewart Little to the boys. They hung on every word. This was something I had pictured before Autism, before they were born. I dreamed of sharing that particular book with my future children. It might have taken us longer, it might not have been the route I expected to get there, but the dream lasted and it was fulfilled. I did not take it for granted. 

Reality, life, and my motherhood are often beyond my control. The lesson of surrender stays with me. My thoughtfulness has grown to include unknown possibilities. I can better discern between the fair and unfair, yet allow my mind float dreamily along. These gains are what I pack with me this morning, as we approach another opportunity for a dream to come to fruition. I'll tell the story once it's true. 

I once perceived my grand and all encompassing motherhood dream as broken, but it was only in my imagination. I cut the sadness of my mistake loose to make room for reality and to hold a space for all good dreams too. 








Thursday, May 14, 2015

Poem: Autistic Child to Mother

Never let them tell you the Autistic child is void of heart. If they do, and it hurts, cherish every moment that the Autistic child defies. Revel in the rebel. The following poem is from my son, Ty. And I am the luckiest mom in the world.



Mother,

When I'm in my teens,

Twenties

Thirties

Forties

Fifties

Sixties

Seventies

Eighties

Nineties

and one hundreds,

I am going to say

"Thank you mother for my brother and my brother's brother being a kid".



Tuesday, May 12, 2015

Radical Acceptance and Love: #AutismPositivity2015

 



Being a writer has been my good fortune in the Autism community. When I began to record our journey here, I did so because I thought that we were traveling in a direction unknown. Most of the parents of Autistic children I first encountered while searching for answers and support followed the belief that their child needed therapies, remedies, and miracle cures. I wanted to walk in love. I wrote that down. I was fortunate because though I felt alone as a parent, the Autistic community started trickling into my life. They were already walking in love. Radical love. They gave me some.

As things went on, I came to understand that Autistic people were in a battle for basic human rights. Sharing the joy and comfort my acceptance has created in the relationship I have with my children was important, but I realized my writing is significant to more than just our family. It allowed me to share parts of the Autistic story. They don't want therapies, remedies, and miracle cures. Autistics want acceptance. It is their right to be included. It is their right to govern their own bodies, minds, and lives. It is their right as human beings to be treated with respect. "All human beings are born free and equal in dignity and rights" and that means Autistic people too.

The general public is so overwhelmingly afraid of Autism, the acceptance I have learned to give my children is often portrayed as extremist. I do what most parents do. I love my kids. Mine are Autistic and suddenly my love becomes inconceivable. The record I keep here is deemed deviant. Eccentric. Indulgent. I must be mad. But, it's the distance between the wrong and right, between fear and acceptance, hate and love, that dictates my rebellion. Justice is just too far from reality. Simply asking that my Autistic children's rights to equality and dignity be honored, makes me an activist.

That disparity, those rights withheld are what put the radical in Autistic love. Imagine giving what has only been denied of you, or, accepting yourself while the world is afraid of who you are. What we offer the disabled is less than they deserve. What we take away is shameful. Refusing to respect Autistics as competent and worthy human beings is our indecency. Each action taken by them to oppose this repression is an act of love. Love for themselves, for their people, and love for those of us so far far behind. Radical love. Get some. I write on.


The preceding essay was written for the annual Autism Positivity Flashblog. The theme 2015 is Acceptance, Love and Self Care. Join the celebration with positive perspectives of Autism on Facebook, Pinterest, Tumblr, & Twitter!