This is for you….

image is the yellow--the sun rising over the earth.  the text reads:  "look closely at the present you are constructing.  It should look like the future you are dreaming."  Alice Walker

image is the yellow–the sun rising over the earth. the text reads: “look closely at the present you are constructing. It should look like the future you are dreaming.” Alice Walker

This is for you.

I read this article this morning in New York Magazine.  And I can’t think of any other way to describe the emotions it provoked than deflated.  Deflated because of so many things.  But mostly because of the way that Issy’s privacy and humanity continue to be disregarded.

No matter how you feel about the shape that discussions take around Kelli Stapleton, I can’t help but believe that most people would agree that it is not okay to continue to publicly label Issy as violent.  That Issy is defenseless.  That she is not being given a choice or a say.  That it is not okay to give this label to a child who will wear it for the rest of her life.  That this portrait of Issy will color everything she does now and forever.

This is for you if you are not Kelli Stapleton.

You are not Kelli Stapleton even if you’ve gotten all the way to the end of your rope and NOT hurt your child.  You are not Kelli Stapleton if something–anything–made you stop.

This is for you if you’re a parent or caregiver of an Autistic child and you need help.  No matter where on that rope you are.

I cannot and will not say that discussions about filicide have any place in talking about what parents need.

I cannot and will not say that filicide is a possible outcome for a parent that is just stressed out beyond what most people think is possible.  For a parent that is stressed out and mentally ill.  I maintain that there are other things at play when a parent commits filicide.  I know that others disagree.

But frankly, I’m so worn out from the circles we go around when discussing these differences.  And I feel like I have nothing more, at this point, to productively contribute to that conversation.

___________________________________
That’s the line.  This is me trying to move the conversation forward.  Trying to move my own mind beyond that which I can’t think about anymore.  This is me wanting Autistic kids and their families be happy.

I want to open up a conversation about how to raise happy Autistic children.  I want to open up a conversation about how to be a happy (mostly) parent to an Autistic child.  I don’t want to talk about filicide or Kelli or Issy anymore because I can’t.  So for now, I will leave that to other disability activists.

So this is for you if you’re interested in discussing change without ^^^ that tragedy or the others like it.

This is for you if you are the parent of an Autistic child and you need help.

I KNOW that all parenting is hard.  I also know that raising an Autistic child presents a unique set of challenges.  I know that there is very little support from professionals and schools that truly helps Autistic kids and their parents to thrive.

I KNOW that the lion’s share of what we are told we need to do to successfully raise an Autistic child is not helpful at best.  In fact, it is often harmful to  Autistic kids and their families.

I know how hard it is to say, “no” to all of that well-intended but misguided advice.  I know how hard it is to say, “No, Ms. Expert.  You actually have it wrong here.  I know you have a million degrees and certificates declaring your prowess, but you just have it wrong.”

I know that as parents we are lead to believe that there is but one way of doing it right.  And there is shaming and guilt when we dare to question the accepted protocols.

But clearly.  Something is wrong with what is being prescribed as “treatment” for Autism.  It isn’t working.  If it were working, we wouldn’t be seeing miserable Autistic kids and parents to the degree that we are.

My god, the things we consider or do subject our Autistic children to… and the money we pay in the hopes of helping Autistic kids find a way to be happy.  Can we not consider some very basic things that don’t cost us anything but time and a little patience as we transition to a new way of thinking and a new way of parenting?

This is for you if you are the parent of an Autistic child and you want to talk about raising a safe and happy Autistic child and you are ready to at least consider an alternative to what is so clearly NOT helping most families.

If you’re willing to consider some of the parenting strategies that work for me and most of the other generally happy parents that I know?  I want to talk talk to you.  I want to help you.  If you don’t want to talk to me because you don’t like me or my style, I want to put you in touch with someone that is more suited to your personality.

I cannot and will not be of any help to those that are only willing to consider ABA therapy as the answer because I believe, based on personal experience, that it is a major contributor to the problems that Autistic children and parents face .  But if you’re willing to think outside of ABA, I want to talk to you about what you feel you need as a family to get your head above water.

This is for you if you need help.  If your child needs help.

This is for you if you CAN help and contribute productively to the conversation.

This is for you if you share my heartfelt desire to see thriving Autistic kids and thriving families.

Comments are open but will be moderated. On this thread, I will not post any comment which refers to Issy or Kelli.  Whether I agree with the comment or not.  If you have a question or comment which is private–please post it anonymously.

Ask/Comment freely but know that I will edit comments to keep them in accordance with my convictions about respectful language.

Let’s talk…

“caregiver burnout”

"Caregiver burnout" caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

“Caregiver burnout” caries the implication that the person being cared for is somehow culpable. It also leaves others with the impression that this state of emotional distress is inevitable when you have an Autistic family member

I dislike the term “caregiver burnout.”  To me, it carries a very negative and connotation about the person being cared for.  It also seems to imply some sort of culpability on the person under care which makes me super uncomfortable in a way that I cannot articulate.

It makes me so sad to see people using this term to describe themselves and all that it implies about their Autistic children.  And families.  It makes me sad that these stories of hardship dominate the conversations about Autism because it gives the impression that there is no alternative to this way of life–to this emotional state of being when you’ve got an Autistic family member.

The media isn’t interested in shining a light on those families, families like mine, who have found a way to thrive and be happy.  Content isn’t sexy.  Happy isn’t sexy. Tragedy and misery are.

The voices of happy families get drowned out by the voices of those in the sexy depths of despair.  As such, a real disservice is done to Autistic people and their families because they don’t get to see that happiness is very possibly well within reach.

Some people say that I’m not “real.”  That I’m not “honest.”  That I try to hide the realities of having an Autistic child.  While I try to be loyal to my child’s expectation of privacy and certainly don’t share every challenge we face as a family, I am 100% truthful when I say that we are, in general, pretty darn happy.  So I feel that I can share, with some confidence, some of the things that I believe help us maintain this state of well being.

Even if I am shouting into a void.  Or into a crowd of people that aren’t ready/willing to open the door to a different way of doing things.  I say to those parents on the edge, those crumbling and broken, “What do you have to lose by trying?”

Therapy/Intervention:
You don’t have to do everything that the experts recommend or make claims about “working.”  I know that parents need to come to terms with a tremendous amount of shaming that comes with turning away from accepted Autism “treatment” protocols.

We stopped doing therapy outside of school hours a long time ago and have never regretted that decision.  Evie gets daily speech and language services at school, she participates in physical education–both general ed, and adaptive.

Outside of school?  She swims almost every day.  She enjoys both the physical and recreational benefits of swimming.

As a family we enjoy the obvious benefits of not handing over any hope of disposable income to those experts that are standing with hands out to take it.  We enjoy parenting a child that is not exhausted and overstimulated by 20+ hours of intensive intervention a week.  We enjoy having an activity that we can all do together regardless of our individual abilities.

Find some physical activity that your child enjoys.  Don’t prioritize interventions and therapies over it.
Speak to Autistic adults.  Read what they write.  Listen to what they say.

Down time:
Don’t underestimate the importance of down time.  For every family member.  Maybe especially your Autistic family member given the fact that becoming overstimulated doesn’t usually lead to good things for Autistic people.

Down time is self directed.  Meaning there aren’t any expectations of what happens during down time (other than safety).  What constitutes down time for you, does not necessarily constitute down time for your child.

Let your child choose (within reason) how he/she will spend his down time.  Schedule down time every day.

Variety is the spice of life:
Not for everyone.  It is possible to be perfectly happy going for long stretches of time (forever?) eating the same things.  Doing the same things.  This isn’t to say that opportunities to try new things shouldn’t be offered and gently encouraged.  But take the pressure off your child (off yourself) to live a varied existence.

My child enjoys: pears, blueberries, corn, cheese, yogurt, apple sauce, apples, nut butters, pasta, and peas consistently.  When I combine cheese and pasta or cheese and pretty much anything, I am able to include less desirable foods–like spinach, chicken, ground beef, etc.  I’ve also found that she enjoys kelp noodles and quinoa pasta as much as the less healthy conventional alternative.

As long as your child’s nutritional needs are being met, don’t worry about variety.  Don’t worry about spoiling your child by preparing special meals for him/her.  Save yourself time and energy by cooking in bulk so that you have preferred foods ready to go.

Don’t be an “Autism Parent”:
Be a parent.  Parent your child.  Don’t parent a perceived set of deficits.  Each child has an individual set of needs.  The fact that other children don’t have the same needs does not mean that your child doesn’t have them.

I treat most of my child’s aversions like allergies.  I wouldn’t try to make a person with nut allergies less or not allergic to nuts by forcing nuts upon him.  No, it is not easy living in a world full of nuts with a nut allergy.  But forcing nuts on a person who is allergic to them can have devastating consequences.

My child doesn’t like having her head touched.  I don’t touch her head unless I have to for her health and safety.  I don’t expose her to sounds that she cannot tolerate.  I certainly don’t seek them out in the name of therapy.

Trust your child to say what is and isn’t okay for his/her body.

Make communication accessible:
Don’t value any one form of communication over another.  For a long time, I was so focused on Evelyn speaking that I didn’t give her access to other forms of communication.  In fact, I think I can even say I withheld it.  This is probably the worst mistake I have ever made as a parent.

Give your child every tool possible to communicate.  Remember that the ability to speak may not be constant.

Hearing the words, “I love you,” in any form is not nearly as important as hearing, “xyz hurts” or “I need xyz.”

Sleep matters:
Don’t underestimate the importance of sleep for anyone.  Sleep in our house is hard won for both Evie and me.  We’ve experimented with all sorts of strategies to achieve it. I resisted medication for Evelyn for a long time.  But when she doesn’t sleep, she is even more prone to seizures and other forms of injuries.  After trying just about every alternative to medication under the sun, both of use medication as a sleep aid.

I’m not pushing medication–especially for children.  I’m pushing the benefits of sleep for everyone.  Achieving sleep might mean stepping outside of your comfort zone.

I tried and tried to force a typical sleeping schedule on Evelyn.  What I’ve discovered is that, she sleeps best early in the night.  If she falls asleep between 6:30 and 7:30 PM, she will get up in the morning between 4:00 and 6:00.  Later bedtimes don’t cause her to rise later and she functions best on 10-12 hours of sleep.  As a night owl, I am still adjusting my sleeping rhythms to hers because my lack of sleep doesn’t seem to influence her sleeping.  But when she doesn’t sleep, I don’t either.

Seek medical advice about sleeping.  One of the things that likely kept Evelyn “up” during the first several years of her life is that she was an undiagnosed Epileptic.  Don’t just assume your kid is a “bad sleeper.”

YOU need sleep too.  Move heaven and earth to get it.

Ways we fight sleeplessness in our family:   experiment with bed linens, experiment with sleep time lighting, experiment with white noise, experiment with sleeping location, experiment with sleeping times, ban on electronics in bedrooms, medication, etc.

Have a strictly flexible routine:
That makes no sense.  But I don’t know what other way to describe it.  Routines are king in our house.  We have routines for everything–even going off routine like when we travel.

Our needs to know what is coming.  Or she gets anxious.

When something comes out of nowhere and catches us off guard?  Our routine is to indulge and sympathize.  In our case, we don’t restrict screen time and loosen up our nutrition standards–see: Evie consumes an entire big bag of smartfood in one day while watching an endless stream of Sesame Street.

Have a routine.  But when you go off routine, expect your child to need additional supports and accommodations.  

Find a small and private support network:
Most people need to vent from time to time.  Choose to do so in a way that does not violate your child and/or his privacy.

Have a question about parenting?  Ask it.  If it is about private matters, ask it privately or anonymously.

You don’t need to do it alone.  But be respectful of your child and skip making your child’s life a public exhibit.

Go offline:
Seriously.  When you’re feeling like you can’t hack it.  Like you can’t give your children the care they deserve.  GET.OFF.THE.WEB.  Actually well before that.  Shutting out the noise of the entire web should be one of your first steps.

Don’t over estimate your importance to the whole wide internet.  Outside of your small and private support network, we will be just fine without you.  I know you think people can’t live without your “real”, “raw”, and “honest” blog/facebook  posts but I promise you, that parents of Autistic kids will be fine without your violin in the orchestra.

All snark aside, I spent the entire month of September completely offline (with the exception of occasionally crushing candy quietly in a dark corner of the internet).  Actually, I pretty much spent the entire summer offline.  I cannot overstate the importance of these breaks to me and my family–I highly recommend them.

Ignore Facebook, your blog, other people’s blogs, Twitter, Pinterest, and whatever grinds you down.

Love the child you have:
“I love my child BUT AUTISM IS HARD.”  No.  The “but” and everything that comes after it negates the “I love my child.”

Don’t think your child doesn’t pick up on that “but.”

Your kid is awesome.  And if you’re still using the “but” after I love my child?  You’re missing out on a world of wonderful and happy.  Don’t waste another moment on the “but.”

Connect in ways that are meaningful to your child.  Even if it doesn’t come naturally at first to you.  Teach your child that he/she can trust you by being trustworthy and loyal–even when you think he/she isn’t looking.

Change the way you think.  I love my child but Autism is hard.  I love my child; therefore, I am going to parent according to my child’s needs.

Change the world.  Not your child.
Like me, I know many parents of Autistic kids are worried sick over what will become of their children when they can no longer be the primary support system.

The truth is that Autistic people will never be safe in a world that demands that they change.  In a world that doesn’t afford them the same standards of decency and humanity as those that aren’t disabled.

As parents, know that with every public statement you make about your child, you are telling the world what to believe about Autistic people.  You are telling the world how to treat your child and every other Autistic person now and in the future.

Spend your energy fighting against Autistic bigotry, not against the nature of your child.

Behavior Management:
Every time I think about how most Autistic kids are treated?  I feel a little panicky.

Imagine spending your days being prompted at every moment.  That there is a constant demand that you keep still.  That you suppress your need to move in the slightest.  That assumptions are made about the function of everything you do or say.  That you have almost zero moments in your day to zone out.  That someone is almost always in your face telling you what you must do.

Say nothing of being overstimulated by other sensory input almost always.  That people believe you to be simultaneously incapable and not working to your potential out of stubborn refusal.  That people do not respect your autonomy and that they think nothing of constantly hand over handing your every movement.

Your communication is shut down, not honored, ignored, written off as undesirable behavior, withheld, or otherwise not available.  What are you left with?

I’d protect myself physically too.  I know it.

Try backing off.  You won’t believe the difference this can make.  Ask me about how the school labeled Evie “a different child” when the ABA stopped entirely.  In other words, they started to see the only happy child her family ever knew.

What do you do to maintain familial happiness?

i am NOT Kelli Stapleton

I am NOT Kelli Stapleton.  Don’t call me that.

And I sure as hell hope you aren’t either.  Or I have a call to child protective services that I am morally obligated to make.

I have a bipolar diagnosis.  I’ve struggled lifelong with bouts of depression, anxiety, and insomnia.  I’m no stranger to emotional instability.  I can say with some certainty that I will never break.  More on that in a bit.

I can say with absolute, unflinching, unyielding, certainty that I will NEVER break my children.

How can I be so sure?

Because I love my children.  When I am feeling low, you won’t find me on Facebook or Twitter posting nasty little ditties about my kids.

Not like this:
loving mother 1

Or this:
loving mother 4

Or this:
loving mother 5

Because this kinda thing?  It isn’t about mental illness.  It is about a selfish mother who doesn’t have an ounce of respect for her child as a human being.

This?  This is about a mother who has systematically and publicly demeaned and degraded her child–over the course of years.  A mother who does not, and has not, valued her child’s humanity for a very long time.
loving mother 2

If I am crumbling and close to the point of breaking?  I’m not blogging about my hatred for my child.  I’m taking a big old break from the blog and social media.  In fact I am doing that little break thing the moment I start to feel overwhelmed–like I have more on my plate than I can currently handle.

I’m getting help before I get to the point where I am loading my kid and poison into the van.  Well before that.

If I don’t get to choose what help will look like?  Like if around the clock care for my kid is just not good enough, for instance?  I’m surrendering my child to protective services.  to protect her from me.

Kinda like alcoholism.  I have all of the empathy in the world for a person who struggles with alcohol addiction.  The moment that person sets foot in a car and recklessly kills another person?  My empathy dries up.  Not for all alcoholics.  But for that person.  I don’t want to talk about how the system failed that person.  I don’t want to talk about what help that person should have had.  That is disrespectful to the person who was killed and the people that cared about that person.

Does that mean I think we should stop talking about alcoholism and the supports that alcoholics need?  Not even.  It just means that I keep that conversation separate from the one around the crime.

Crumbling, breaking, falling apart parents of disabled children?  The ones with “caregiver” stress/burnout, whatever?  They don’t have the time or energy to pop on Twitter to say something humiliating about their children.  Or to write blog posts filled with intimate details about their children.

This isn’t some vendetta.  This isn’t about vilifying anyone.  No need to vilify a person that is ALREADY a villain.  This is about the methodical devaluation of disabled human beings–and all its possible tragic endings.

This isn’t about discouraging caregivers from connecting with resources.  This isn’t about silencing those that need help.  This isn’t about denying stress or mental illness.

This is about insisting that there is always an alternative to killing your child.  This is about acknowledging that as parents, we are responsible for our mental health.

This is about not allowing the allies of murderers or would be murderers to cloak reality in the guise of lack of services and mental illness.

This is about not speaking about disabled people and especially disabled victims of violent crime in ways which normalize and establish caregiver murder as understandable, acceptable, or even expected.

This is about not allowing ourselves to be indoctrinated, by the murder apologists, with the notion that we could be Kelli Stapleton  This is about all of the would be Kelli Stapletons refusing to acknowledge that they have taken steps down that same road Kelli traveled.  Deliberate steps through the choices they make every single day.

This is about their manipulation tactic:  “You could be Kelli.”

Attempted murder doesn’t happen to just any old parent of any old Autistic kid.  It happens to the ones that don’t love their kids.  The ones that would rather snuff out a life than take a brand of help that is undesirable to them.

I could not be Kelli Stapleton.

Not now.  Not ever.  Not in the absolute worst possible set of circumstances.

I’m not Kelli Stapleton.

If you love your child, neither are you.

because she is better

 

Pink sky and beach.  A shadow of a person in blue standing on the beach. Text reads:  "I will not ask my child to change so the world can stay the same.

Pink sky and beach. A shadow of a person in blue standing on the beach.
Text reads: “I will not ask my child to change so the world can stay the same.

I will not ask my child to change so the world can stay the same.
I will not.

Many people will cast her out for flapping, for flopping, for being Autistic.
I will cast many people out for being bigots.

The world is filled with dangers for Autistic people.
All the more reason to teach her safety and self-advocacy skills.

It is often really hard to be a parent.
It is.

I worry about what will happen to her when I’m gone.
I better prepare her for the world and the world for her.

I wonder what kind of life she will have if she doesn’t choose to conform.
I know the kind of life she will have if I force her to try.

The world isn’t going to change for her.
She isn’t going to change for the world.

I can’t change the world.
Yes I can.

She isn’t the child I dreamed I’d have.
She’s better.

being white: some things I know and don’t know

grey background with faded scales.  text reads,"“Ignorance of how we are shaped racially is the first sign of privilege. In other words. It is a privilege to ignore the consequences of race in America.”  ― Tim Wise

grey background with faded scales. text reads,”“Ignorance of how we are shaped racially is the first sign of privilege. In other words. It is a privilege to ignore the consequences of race in America.”
― Tim Wise

On Saturday, August 9th, an unarmed 18 year old was shot and killed by a police officer in Ferguson, MO.  Michael Brown was a recent high school graduate and was to begin college shortly.

The police claimed that there was a violent struggle, during which, Michael Brown was shot.  However, witnesses tell a different story.   A story of a young black man, an unarmed black man, running from police and being shot.  The officer reportedly continued to discharge his weapon after Brown was shot, after Brown turned and faced the officer with his hands raised in the air.

This, in all its gruesome horror, is the tip of the iceberg.  Because what follows is so very troubling.  While there have been reports of breakout violence and looting, there have also been reports of officers using rubber bullets and tear gas on people just walking.  JUST WALKING!  The media has been ordered out–two journalists were unlawfully arrested while following instructions of the officers.

The story emerging via streaming videos and Twitter feeds is at odds with the official story.  It is emerging despite the attempted media blackout.  People like MO State Senator Maria Chappelle-Nadal will not be silenced–even when, like Chappelle-Nadal, they are gassed while peacefully protesting.  Actually “sitting” according to Ms. Chappelle-Nadal.

As I sit here in Vermont watching with horror as this unfolds, there are some things that I know.  Things that shake me to the core of my being.

I know that this wouldn’t happen where I live– I believe the population of my state is something like 95% white.  Police don’t target white people unjustly as a matter of course.

I don’t ever worry about the police.  I don’t worry that I will become the unfair and prejudicial target of police attention.  I never have given that possibility a thought.  It isn’t my reality.  If it were ever to happen, I would think nothing of assertively defending myself.  I wouldn’t fear violent repercussions.  This scenario is pretty far out of the realm of possibility for me and probably every white person I know.

We are white.  We are not subjected to systemic racism.  I know this because white Michael Brown’s do not exist.

The fallout after Ferguson.  That wouldn’t happen here or to me either.  Back in 2007, I participated in a series of protests over funding the Iraq war.  We occupied our state representatives offices for a day.  At the end of the day, we refused to leave.  We were trespassing, actually breaking the law.

The police were called on the 8 or so of us that decided to stay.  We were issued written citations.  I don’t even think there was a fine.  The officers were courteous and professional.  They even joked with us.  They waited patiently while two of the gentleman in our group decided how they wanted to be lead out of the building.  They chose to be cuffed together–the rest of us chose to walk out unshackled–we were given the choice.  Truth be told the officers indulged those two gentlemen with amusement by cuffing them together.

We are white.  We don’t worry that our First Amendment rights will be violated.  I know this.

And when we do break the law?  Like we did?  We are typically treated with kid gloves. The consequences of using excessive force on white people would be astronomical for any officer participating.  The public outcry would reverberate far and wide.

When you’re white, police brutality is typically not a looming threat even when you ARE breaking the law.  I know this.

When I think of the most vile things that have occurred in my recent lifetime, I know that minorities are almost without exception the victims.  Usually people of color.

Hurricane Katrina keeps coming to the front of my mind.  The vast majority of those left to suffer without food, water, and adequate shelter were black.  If that were a predominately white community?  Those people would not have been left to die.

When you’re white, the government doesn’t stand by and thumb twiddle while thousands of lives are in immediate peril.  I know this.

There is so much I don’t know.  I don’t know what it feels like to go about life knowing that a sideways look could land me in a world of pain and trouble at the hands of those sworn to protect me.

I don’t know what it feels like to know what it feels like to simultaneously be a victim of injustice and blamed.

I don’t know what if feels like to know that most people would barely pause to acknowledge serious injustice perpetrated against me.

I’m pretty sure I would feel powerless and unspeakably vulnerable.

I’ve been afforded the luxury and privilege that allows me to claim that I’m a non-violent person.  I can say things like, “Violence is never the answer,” because I’ve never been asked the question.

What would I do?  What would I do if I knew that some innocent person that I love would be subjected to brutality?  What would I do if I could predict with some certainty that one of my children would be the victim of state perpetrated violence?  How far would I go to protect the people that I love?  What would I do with the certain rage that would be a product of watching the guilty walk away with little more than a slap on the wrist?

I’m white.  I will never be able to do more than speculate.  Speculate without the lived experience of existing day in and day out with the ever present shadow of systemic racism.  I will never really know.

 

maxine on whole body listening

settings

Max:  “Mama, does Evie have invisible powers sometimes?”

Me:  “No, no one does.  Invisible powers are pretend.”

Silence.  And then.

Max:  “Sometimes people don’t talk to Evie.  Not even ‘hi’.”

Me:  “You’re right.  I think sometimes people don’t know how to talk to Evie.”

Max:  “Why?  You just talk.”

Me:  “Maybe because Evie doesn’t talk with her mouth.”

Max:  “Maybe we can buy everyone ipads so they can hear Evie.”

Me:  “I don’t think ipads will help people hear.”

Max:  “When she isn’t talking with her mouth or ipad, people can listen with their eyes and bodies.”

Me: “You’re right”

Now that’s some whole body listening that I can get behind.

 

 

The neurodiversity fence

Written by Beth Ryan

ONeuordiversity is not about writing pretty blog posts that appeal to the masses.  It is about the human rights of people of all neurologies.  It isn't about picking the parts that make you feel good.  If you want to make a difference.... GET OFF THE FENCE!  loveexplosions.netne of the criticisms that is most frequently hurled at me by other parents of Autistic kids is that I judge people.  I freely admit that I do.  Often.  Constantly even.

But my judgments don’t come from a place of wanting to elevate my own self esteem as so many of these criticisms imply.  I am ever engaged in judgment of what will hurt or improve my daughter’s quality of life.

I’m not perfect.  I’ve done and said and written things which I know have been hurtful to my daughter and her Autistic tribe.  One of my greatest regrets is the fact that I spent so much time fighting AAC and trying to force my child to speak.  That cost her more than I will ever know.

The other criticism I get most often is that I am “PollyAnna” about Autism.  That I want to sweep the challenges my daughter and family face under the rug.  While I choose not to publicly share details which I feel could hurt my child or family, I do not ever deny that some things are really, really hard.  But I cannot think of any obstacles that could not be overcome by a shift in the way disabled people are supported, accommodated, and spoken about.

Recently, there was a stir caused by a very popular blogger’s comment:  “I’m also going to remind you that even in the midst of all the positivity, you’re not human if you don’t have moments where you wish to god your kid didn’t have to struggle and all you want to do is tell autism to f@%k itself. That’s the secret that no one will talk about. But it’s what makes us real, and it’s okay.” 

I judge.  I judge.  Yes, I do judge.  THIS hurts my child.

And I’m judged.  I’m not “human”.  I’m not “real”.

My child is Autistic.  She IS Autism.  Telling Autism to go fuck itself….that’s telling my kid to go fuck herself.  This has never crossed my mind.  Not because I am perfect.  Not because I don’t have bad days.  Not because I don’t want things to be easier for my child in many ways.  Not just because I love my child and this thought would be a betrayal of that love.

Because my child is NOT the problem.  The problem is the way the world responds to my child.  And on the days that I struggle–the ways that I respond to my child.

Being a parent to ANY child is hard.  There are days when bedtime cannot come soon enough.  You don’t have to have an Autistic child to know that this is true.  Those are the days where I succumb to my human weaknesses.  I get frustrated.  I say the wrong thing.  I react the wrong way.  And my reactions make life harder–for my child and for me.

I’m privileged in that parenthood was a choice for me–I do realize that it is not a choice for every person.  When I decided to become a parent, I signed up for the ups and downs.  I signed up for the happiness and the heartache.  I signed up for all of it.  I’m accountable to my child.  I’m accountable to myself.

I judge people.  I do.  I also judge myself.  I’m responsible for judging myself and for doing better when I fail.

I’m responsible for creating a world in which my child can thrive.  I’m responsible for judging the things that stand in the way of my child’s quality of life.

I’ve found that this responsibility isn’t always fun.  And it certainly doesn’t win me popularity.  But we can’t make things better if we don’t talk about the things that are wrong.  I’d love to write a blog which everyone loves and celebrates.  I would love to not receive hate mail.  I’d love to not rock the boat and be friends with everyone.  I’d love it if everyone would think that I am just the bees knees.  Because it isn’t fun when what you say and write is not popularly received.

But I love my child.  And I will stand out in the cold and rain for a lifetime if it means that she is spared even a moment of facing the elements.  Not because I am strong.  Not because I am brave.  But because I’m a mother.  And that’s what mothers do.

My child is more important than stroking the egos of other parents.  Every single time.

My child is more important than my desire to feel liked.  Every single time.

My daughter doesn’t have the luxury of riding the fence.  So I’m not about to climb up and ride it at her expense.

 

Terrorist Threats

Written by Beth Ryan

“We should talk about supports that families need. We should talk about it when there are cuts. We should talk about it when lack of services makes it difficult for us to work, to go out in the community, to perform ADLs, etc. We should talk about supports and services until our faces turn blue – but NOT in connection to murders.

When someone kills their disabled child/children and our response is “this shows that we need more services,” we as a community are taking people with disabilities hostage. The implicit threat is “give us more help or the kids die.” Saying that parents are forced to kill their children by lack of services also destigmatizes child murder and excuses the parents’ actions. The truth is that plenty of parents raise children with disabilities under all kinds of circumstances, without killing or abusing them.

Service provision is so so very important but we CANNOT use child killing as a launching platform for advocacy on this issue. It will do more harm than good.”  Zoe Gross

 

The importance of the statement above, made by Autistic activist Zoe Gross, cannot be overstated.

Image is peach graphic with light pink peace sign. The text reads: ter·ror·ism [ter-uh-riz-uhm] noun the use of violence and threats to intimidate or coerce, especially for political purposes.

On April 3rd, Robert Robinson was murdered by his mother, Angie (who also committed suicide).  Robert was 16 years old and Autistic.

The conversation following the murder centered around lack of services and sympathy for the mother.  As it always does.  I can say always because this happens with enough frequency to warrant that language.

Why are we not collectively outraged that disabled people are being held hostage by those that are making terrorist threats?

That IS, by definition, what is happening.  A politically motivated group is making threats of further violence against a vulnerable group of people.  Disabled people.

It is tempting to negotiate with terrorists.  Especially when the threats of violence are credible.  And recent history has shown these threats to be quite credible.  But we know that submitting to this type of savagery opens the door to continued–escalated even– violent coercion.  Surrendering to those that use homicide as a negotiation tactic serves to reinforce this as a viable means of political gain.

Productive conversations by peace loving people do not begin with ultimatums of brutality. Not ever.  Parents that love their disabled children do not threaten to do them harm should their demands not be met.  People that value the lives of disabled people do not sympathize with the thugs that make such threats.  Nor do they use the violence already perpetrated by other parents as blackmail to achieve their objectives.

The most compelling argument cannot be entertained when it is dictated that the rejection of said argument will result in the intentional harm of other human beings.  Scores of parents to Autistic children are engaging in this type of threat.  By doing so, they are undermining what is, in many cases, a valid plea.

ALL Autistic people need more support and accommodation.  Caregivers need different and better supports than what is currently available to most.  (I would argue that what caregivers think is needed, in most cases, is actually contrary to their objectives but that’s a whole other discussion).  However, the murder of a disabled person is not a result of the failure to meet these needs.  The murder of a disabled person by a caregiver is an intentional act of hate.  Pairing it with a suicide does not make the perpetrator  more sympathetic, more understandable, or less hateful.  Attempts to make martyrs out of those that execute or attempt to execute (as we see being done with Kelli Stapleton), is consistent with the strategies that terrorists routinely employ.

I demand that my Autistic child and her tribe be treated humanely. And though standing up for human rights and social justice is of critical importance and is central to my beliefs, I haven’t once resorted to threatening violence if my demands are not met. How ironic, then, that those actively engaging in terrorist-style ultimatums and threats, consider me to be a part of some sort of radical fringe movement. Chew on that!

 

 

 

 

#StopCombatingMe: Enough. And not Enough.

Image Description: Black Box with white surrender flag. Text: Surrender is powerful when your war is unjust. Peace, Love, & Support for Autistic people. #stopcombatingme loveexplosions.wordpress.com

Image Description: Black Box with white surrender flag.
Text: Surrender is powerful when your war is unjust.
Peace, Love, & Support for Autistic people.
#stopcombatingme
loveexplosions.wordpress.com

Written by Beth Ryan

The Combating Atutism Act is expires this fall.  As written, it is a source of national shame..  It is, therefore, imperative that this legislation be completely overhauled.  Or it must not be renewed.

My Autistic child will always be my child.  But someday, she will be my adult child.  I regularly get grim glimpses of her future through my involvement and friendships with Autistic adults.

The vast majority of Autistic adults that I know, and I do know many, live in crushing poverty–constantly facing lack of suitable employment opportunities, deciding between heating their homes or buying food, denial of access to needed medical treatment, and so much more.   They lack the supports and accommodations that they desperately need in order to survive.

Autistic people, particularly Autistic adults, have been forever under-represented and under-served.  Our legislators have failed to incorporate input from those that Autism legislation is intended to serve–that is, of course, assuming that Autistic people are the intended beneficiaries.  It would be unthinkable to pass legislation which dismissed the advisement of the population of any other minority group that  it is intended to serve.   Not the parents/caregivers of those minority groups.  Not the big name “charities” claiming to represent the interests of Autistic people, all the while, completely excluding them from meaningful participation.  But the stakeholders themselves.

My eight year old daughter deserves a future and Autistic adults deserve a present.  They are entitled to essential supports across their lifespans.  Reallocating funding so that she, and other Autistic people, have access to education, employment opportunities,medical treatment (especially preventative medicine), etc. will serve the interests of both the Autistic community and the country as a whole.

And for the love of all things holy, rename the legislation.  Combating Autism Act?  That’s a disgrace.  It underscores the fact that the current legislation is focused on eliminating Autistic people rather than supporting them.  Using violent language to describe legislation allegedly designed to enhance the lives of Autistic people and their families is reprehensible.  It is, in effect, sanctioning the dehumanization and discrimination that Autistic people, including my child, face every single day.

Enough combating human beings.  Not nearly enough support.
#StopCombatingMe

 

scorch the earth #lovenotfear

Image is a rust colored background.  A faded puzzle piece is covered by a heart.  The text reads:  No more puzzle pieces.  Love not Fear.  loveexplosions.wordpress.com

Written by Beth Ryan
This post was written as a contribution to the “Love not Fear Flashblog” presented by Boycott Autism Speaks.

You are my child.  You are the child that I have.  And the very child that I wanted.

Your Autistic body is exquisite.
May it always respond to you.  To your will alone.
You owe your gaze to no one.
May you rest it only on that which offers you contentment.
Your flapping hands express your joy.
May they laugh at those that seek to make them table ready.

Your Autistic spirit is on fire.
May it burn bright in sight of those who would extinguish it.
You owe compliance to no one.
May you incinerate the intentions of all those who would force it.
Your worthiness of humanity is infinite.
May it ignite the blazes of love and acceptance to which you are entitled.

Every part of you is Autistic.
And I love every part of you without qualification.
There will never be a “but” after my love.
May we scorch the earth of all that endangers your selfhood.