Why? Why? Why?

“We love how Evie is always happy & smiling.”

This is a picture of the note that Evie’s para educator wrote yesterday.

evie note school

Today her note was short.

“Great Day!  So happy all day long!”

This is my Evie.

Full of love.  Full of life.  Full of happy.

This is my child.  And I love her with every corner of my being.

I’ve been labeled as radical–part of a fringe movement.

When did a mother’s love for her child become some sort of unthinkable political statement?

Here’s the thing.  Evie is Autistic.

My love cannot be contained in those tragic little boxes that it is supposed to fit in when you’re the mother of a non-speaking Autistic child.

And I don’t try to confine it.  So it explodes out all over the world.

Just like it has always done.

Because freaking damnit!

Evie deserves more love than I will ever be able to give her.

And I have all of the love.

Just like all parents do.

And poor Evie.

On paper, she looks like a good poster child for the Autism tragedy story.

Non-Speaking.  Insomnia.  Needs full personal care.  Needs 24 hour supervision.

I know that many of you are thinking that Evie should have come with her own melancholy violin soundtrack.  And probably me too.

Because that’s what you’re taught to believe.

But I am here to tell you that all of those Autistic despair ticker points blend into our life.

The hardest part of having an Autistic child, for me, is dealing with other people.

And the fear that grips my soul and makes many of my nights sleepless is that Evelyn is growing up in a world that hates her.

Growing up in a world where her life does not have the same value as your child’s life.

Because Evie is Autistic.  And your child is not.  Real life example, my child could be denied a life saving organ transplant because she is Autistic.  No, that’s very real.  Not made up.  And don’t, for a second, think that doesn’t cross my mind every time we visit her cardiologist.

And how do we get to a place where Autistic people are not considered as worthy of a heart as non-disabled people?

Well I will tell you.  The Autism factory.

Autism Speaks.

Yeah, I know it is the only Autism “charity” that you’ve heard of.

And oh boy do they do a great job of spreading “awareness.”

Please tell me…the co-founder of which other charity would say this about the population they claim to represent?  “Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.  ”

Or can you let me know, pretty please, why I shouldn’t be outraged that Autism Speaks churns out videos where a board member talks about wanting to drive their kids off a bridge IN FRONT OF THE CHILD in the name of “awareness”?  And all like it is normal and natural to feel this way.

That’s not awareness.  That’s abusive.  That’s a person teetering on the edge of criminality.  And in no other circumstance would this be acceptable.  Only if you’re the mother of an Autistic child.

And all of the world sees this propaganda–because it is Autism Speaks.  They have what seems like an infinite budget to describe Autistic children as monsters.  As money-sucking burdens to their families.

As completely and utterly worthless.  No I am not being dramatic.  Because you don’t spend gazillions of dollars trying to prevent and cure children that are not Autistic.

And that’s what Autism Speaks spends their money on.  Churning out fear of Autism.  And telling the world that we need to wipe out the existence of these beasts.

And I’m not supposed to be angry to have my child described to the world in this way.  I’m not supposed to rant or use harsh language to describe the fact that this organization is promoting the hatred and bigotry my child will live with every day for the rest of her life unless something changes.

I’m not supposed to be angry that other parents think it is acceptable to KILL their Autistic children.  Never would the majority of the population defend a mother who tries to kill her child….unless that child is an Autistic burden.

It is somehow outrageous that I would say that I have never dreamed about killing my child.  That I don’t fantasize about some non-Autistic version of her.  I’ve been dubbed “sanctimommy” and called a liar for saying that I am not jealous of parents to non-autistic children.

I am quite literally an outcast for loving my child the exact way that she is.  Other parents are expected to love their children without restriction or condition.  My child is Autistic.  I am expected to want to change/cure/prevent/fix her.

I’m not sorry for loving my child.

I’m not sorry that I’m angry.

I’m not sorry that I don’t think my child is a monster.  Or that my life doesn’t look anything like the one that Autism Speaks would like you to believe I lead as the parent of one of those full on Autistic kids.

No.  I will not feel guilty for feeling blessed to have this amazingly perfect specimen of a child as my own.  I will not hide my pride for her.

I will not play nice with the people that seek to diminish her human worth to the point that her life could very well be endangered.

My daughter is perfect.  I want to change the world.  Not my daughter.

This is why I support a complete boycott of Autism Speaks and all of its affiliates.  And I am asking.  Rather begging for you to please take one second out of your life and sign the petition right here.  And if you’re feeling extra kind, like our facebook page.

I’m asking you to do that for Evie.  My laughing happy girl.  I am asking you to do that for me–her adoring mother.  And PS–as the organizer of the petition I will know whether or not you care as I have access to the list of those that sign.  I am only half kidding about the caring part.

What were you saying after Alex? Issy?

Now we can add Jaelen– 13 years old and Autistic, and his sister Faith–10 years old to the growing list of children killed by their own parents.

If you were saying that the parents deserve empathy and compassion for the burdens they bore, will you be saying that, again, this time?

There are few details available at this time.  But the mother–the murderer– apparently sued the federal government because she believed the vaccination caused her son’s injury.  She, apparently, lost last year.

But details have a way of emerging.  As we’ve seen too many times.  And I fear.

I fear.  I fear.  I fear.

I fear that I will hear more about the tragic lives of parents–raising their Autistic kids.

I fear.

I fear that we will hear more of the same from that vocal group of Kelli Stapleton supporters.  I fear.

I fear that they will say, “See, parents need help!  The system is failing them!  There aren’t enough supports!”  I fear.

I fear.  I fear.

I fear that they will not look down at their hands and see that there is even more blood covering them.  That they are up to their elbows in blood.

That they will not see that it is only a matter of time before we are all drowning in the blood of our disabled children.

I fear that they will refuse to see that the narratives that they are choosing for these stories are deadly.

The gory pattern is unmistakable.

The gruesome language that is used to describe disabled children, the systematic devaluation of their very existences, the narratives about parents needing more, more, more… it is contributing to this pattern.

And to those that are speaking these words..

You are culpable.

And the more you speak them, the more inextricably implicated you become.

You’re culpable.  Stop.

touch nose. gummi bear: what is aba and why does it suck?

After starting this post, I realized I was overly optimistic about containing this series to four posts.  I’m going to need to expand the series to do the topic justice.
Touch Nose.  Gummi Bear: ABA in our Family
Touch Nose.  Gummi Bear:  What is ABA and why does it suck?
Touch Nose.  Gummi Bear:  Why treatments designed using ABA are all the suck
Touch Nose.  Gummi Bear:  If ABA is sooooo bad, why is it used so often?
Touch Nose.  Gummi Bear:  Voices of Autistic Adults.  Adult Autistics who are willing to take a brief survey.  Click here.

What ABA is and is Not
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I think that I have had a moment of understanding about ABA(Applied Behavior Analysis).  I am going to attempt to share what I think I’ve learned…what ABA is and isn’t.  If you already have a solid understanding of this—skip this part because it is kind of boring.  But I would caution that MOST people don’t—even those writing law which mandates ABA treatment.

ABA is, in the most simple terms, a “research methodology” (Schreibman, 2007).
ABA is not “a treatment for Autism” (Schreibman, 2007).

It doesn’t change my opinion about the treatments which are developed by the ABA process.  But it does explain why so many different treatments are called ABA (in reality designed using the ABA process); yet look so different.

I’m going to try to illustrate this using an example.  I use a computer to design a virus which causes the entire US economy to crash.  We wouldn’t say that the computer is the cause of mass devastation.  We would say that the virus is the cause of the devastation.  The computer can still be used to do good things.  (In the case of ABA, I actually still think the computer is pretty much always bad, but will get to that in a bit).

So let’s start by talking about what ABA really is.  I already explained that it is a research methodology—and I’m sure that I’ve oversimplified that but go easy on me.

Applied:  Socially significant behaviors are selected.
Behavior:  The behavior must be objectively measured and changed.
Analysis:  “An experimenter has achieved an analysis of a behavior when he can exercise control over it.”  (Baer, Wolf, & Risley, 1968, p. 94)

Baer, Wolf, and Risley described ABA as “the process of applying sometimes tentative principles of behavior to the improvement of specific behaviors, and simultaneously evaluating whether or not any changes noted are indeed attributed to the process of the application.” (Baer, Wolf, & Risley, 1968, p. 91)

ABA is Inherently Unethical
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When I originally endeavored to write this series for my blog, I didn’t realize that there was a distinction between ABA as a research methodology and what are commonly referred to as ABA treatments—treatments for Autism which were developed using the ABA process.  They are used, interchangeably, even in law.  With this understanding, I realized that I will need to examine both the ethics of the methodology and the treatment.  In this post (which will be quite boring, sorry), I will strive to reveal the intrinsic immorality of the ABA process as it relates to how the process is applied to Autism treatments.

Often, when I speak to people about treatments designed using the ABA process, they claim that that the treatment that they are employing for their children is not like Lovaas, for example.  And that’s great because Lovaas type programs are abhorrent.  But here’s what we need to keep in mind.  ANY program which is designed on unethical theory is inherently iniquitous.

Let’s start with the Applied.  In order to be applied, behaviors are selected that are meaningful and socially important must be targeted.  This almost always (when the rights of others are not being infringed upon), unquestionably, falls outside of scientific capacity.  It requires subjective decisions to be made about behaviors by fallible and biased human beings.    What happens when human beings make judgments about which behaviors are important?

We get Autistic children touching their noses on demand in exchange for gummi bears.  Touch nose.  Gummi Bear.

I challenge anyone to make a case for scientific guidelines for determining which behaviors are and are not meaningful and significant for society.  CANNOT BE DONE.  What happens when people try?

We get Autistic children being coerced into quiet hands.  Into making eye contact. 

If you don’t agree with me that these are not behaviors that should be subjected to modification?  Well, that just illustrates my point about subjectivity.

One of the things you will hear behaviorist say is that in the field of ABA, behavior is treated as a function.  Which is why I find it so hard to understand how they miss the boat so often.  Behaviorists are given free reign to label things like eye contact and self-stimulatory behavior as maladaptive.

But they routinely ignore that the function of these behaviors are, in fact, adaptive.  I’ve lost count of how many Autistics have told me, “I can listen to what you’re saying, or I can make eye contact.  I cannot do both at the same time.”   The identification of these divergent behaviors as needful of modification restricts the access of Autistic people to the behaviors that they have adapted in order to function.  I fail to understand how anomalous behavior (of which adaptive function is habitually ignored) is worthy of modification.  Behaviorists have proven, time and time again, an intolerance to Autistic characteristics and the way that they manifest themselves in behaviors.  It is not okay to decide that self-stimulatory behavior is worthy of modification—especially when we slap labels like “scientifically proven” and “evidence based” on these decisions.

Further, even if we examine behaviors which infringe upon the rights of others, is modification the right strategy.  Let’s say that every time I put my daughter in her car seat, she hits me.  She is violating my rights by hitting me, right?  Does it make sense to modify this behavior when we don’t even know why she is hitting me?  Is it ethical to focus in on the hitting behavior?

I say, no.  I say there are a myriad of reasons for which she could be hitting.  Maybe there is something sharp in her car seat.  But I’ve ignored this possibility and just assumed that she is hitting in protestation.  By pursuing behavior modification of this behavior, my child is endangered.  Both by the sharp thing in her seat and by the fact that I have taught her that communication is not valued.  I’ve also taught her that she cannot count on me to meet her needs.

Can we talk about the analytic part of ABA now?

The result of this, mostly, unchecked control ignores the value of an Autistic person’s right to bodily autonomy.  The implications of this cannot be overstated.  Modification of subjectively selected (very rarely by the person receiving the treatment) behaviors, behaviors which are rarely infringing on the rights of other members of society, is considered of higher worth, than the most basic of human rights.  Hence, the human rights of Autistic people are considered not equal to the rights of non-autistic people.

We all have behaviors which may be judged by others as socially unacceptable, bizarre, and/or maladaptive.  But are we willing to permit other people to draw, not only, conclusions that these behaviors are not meaningful to us in some way, but to relinquish our autonomy to another human being to exert control over them?  I’m unwilling to do so.  Is my daughter, and other Autistic people, not entitled to this same sovereignty?  To answer this question with, “no” is to debase Autistic people.  To designate Autistic people as less valuable human beings.  As my Autistic friend K from Radical Neurodivergence Speaking will tell you, “I’m not a real person anyway.”  Is she right in your eyes?  Not in mine.

But, but, but…ABA works!
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Lots of things “work” that are intrinsically wrong.  But what do they work to do?  Let me point out the obvious—just because something “works” that doesn’t mean that the end result is a moral accomplishment.  Guns work to kill people.  But is what they work to do an ethical victory?

Or really any worthwhile accomplishment.  I leave you with the example of, “Touch nose.  Gummi Bear.”  Yes, behavior modification can teach my daughter to touch her nose on demand in exchange for a gummi bear.  I’m wondering how on earth this is socially significant.

Further, and more importantly, I am wondering how and why we are making the assumption that my daughter does not know how to touch her nose.  The presumption is that she is incompetent.  That she does not know how to touch her nose.  It ignores the fact that there are any number of reasons why she may not be touching her nose when I ask her to—including that it is ridiculous to repeatedly ask her to touch her nose.

Because I was curious.  I intended to tell my three (almost four year old) to touch her nose repeatedly.  She complied two times before saying, “Why are we doing this?  I don’t want to.  Let’s paint.”  And then she got off her chair and went to get the paint.  Should I assume that her non-compliance with my demand means that she does not know how to touch her nose?  Should I demand that she continue to touch her nose to prove that she has, in fact, mastered the skill?  Or can I assume that it is absurd to continue to insist that she do this to demonstrate she understands?  Shouldn’t we be doing…oh I don’t know…ANYTHING else?

Oh!  In case you missed it above:  Adult Autistics who are willing to take a brief survey about their ABA experiences, Click here.  Trigger warning for ABA questions.  This is not a survey for parents of Autistic children.

touch nose. gummi bear: ABA in our family

This will be a series:
Touch Nose.  Gummi Bear: ABA in our Family
Touch Nose.  Gummi Bear:  What is ABA and why does it suck?
Touch Nose.  Gummi Bear:  Why treatments designed using ABA are all the suck
Touch Nose.  Gummi Bear:  If ABA is so bad, why is it used so often?
Touch Nose.  Gummi Bear:  Voices of Autistic Adults.  Adult Autistics who are willing to take a brief survey.  Click here.

The time has come for me to write the dreaded ABA posts.  Dreaded by me because it isn’t the kind of thing that I write well.  Dreaded by some of you because you think ABA is where its at.

I’m compelled to write it because I believe it was one of the factors that contributed to Issi Stapleton’s physical reactions.  I’m compelled to write it because I’ve seen, first hand, the effect it had on my daughter.

If you use ABA, please don’t go into defense mode.  There are some things that ABA has branded as ABA that are not the intellectual property of ABA.  Some of these things, I like and am fine with using as tools for Evelyn.

  • Data Collection–when used as a tool to determine antecedents to meltdowns, seizures, etc.  I do not like data collection to determine if a student has mastered a skill.
  • Breaking down tasks into small steps
  • Visual schedules

Our family’s history with ABA
So, I thought I would start by telling you about our family’s experience with ABA.  When Evelyn was still in Early Intervention, PECS were introduced by her speech therapist.  At the time, Evelyn was probably nearly 3 and was still verbal; however, she was mainly using consistent speech approximations and signs.  She was not yet stringing words together.
I admit to having had a bee in my bonnet about PECS right off the bat.  I was told that when we were doing PECS, we could only honor requests Evelyn made using the picture symbol.  If she signed or verbalized, we could not honor it.  And it was not counted as a success.  I was also told that giving Evelyn access to the PECS was “dangerous”.  It had to be implemented in this very strict way–you know with the trials and the recording of data, etc.  So, admittedly, I didn’t buy into PECS.  I was also at a point where I was obsessed with Evelyn’s verbal communication.
Evelyn stopped speaking and signing shortly after she began using PECS–I’m not attributing this to the PECS in anyway.  She entered Early Essential Education when she was three and continued working on the PECS.  I believe, at this time, discrete trials were introduced and I think I heard about the words “table ready” but didn’t give them much thought.  Evelyn was not making significant progress in any area.  Her EEE special educator suggested that we apply for ILEHP.
ILEHP is, theoretically, a utopian interdisciplinary collaboration–think medical, PT, OT, SLP, social workers, etc.  We were to come up with three questions for the team to answer.  At this point I don’t even remember what the three questions were.  I do remember that I was perseverating on Evelyn starting to verbalize again and was majorly down on PECS.  I also remember that this is the first I heard of ABA.
They showed a video of a young child “working” on this chain of tasks.  She did it with such efficiency and focus, I was truly impressed.  I didn’t ask enough questions or give it enough thought at the time.  Had I really thought about it, I probably would have seen that the child was performing like a robot.  And the tasks were not practical.
During EEE, I didn’t agree with her speech therapist in a lot of ways…and I can see where my thinking was incredibly flawed by my desire for Evelyn to verbalize.  But her SLP and Developmental Educator were totally great.  I have doubt of their respect for my daughter.
Fast forward to Kindergarten.  I believe, at this point, Evelyn started receiving services from the school’s Autism Specialist daily.  I believe I insisted on this.  BIG MISTAKE.  Enter the school’s Autism Specialist–BCBA spending a good deal of time with my child.
And then, where Evie liked school previously, she no longer did.  Coincidence?  I think not.

From an email I wrote shortly after  it started January 16th, 2012.

I am really concerned that it sounds like Evie is biting and protesting (flopping to the floor) so much at school. I think the breaks without stimulation mentioned above will help. I would like to see more data about this in Evie’s daily notes home. I am concerned that she seems to be feeling so frustrated and am wondering how we can make this situation better. Please have S and whoever else works with Evie make a note of what happens and when and I will see if I can come up with any ideas. J mentioned that she has a different theory and approach when Evie flops than we do at home. I can’t remember if you’d already left. J said that you guys make Evie follow through on the request to say wash her hands as she doesn’t want to reinforce the protesting behavior. While I can see where J is coming from, I disagree when it comes to Evie. We find that ignoring the protest for a minute and giving Evie a moment to collect herself works best in that she calms down quicker. I don’t feel that it reinforces the behavior as she still needs to follow through. We don’t like forcing Evie to do anything unless she is exhibiting an unsafe behavior like biting. I am guessing that other children at the school protest occasionally and that they are not physically forced to meet the request of staff. I don’t want that to be different for Evie.

And then came the reply from the Autism Specialist:

In my observations, I noted a contrast when staff waited for her to stand up after flopping. If the same direction was given, she would flop repeatedly and become more distressed. In effect, she was less likely to comply with the direction and became more resistant to prompting. Staff rescinded demands a few times. The data thus far indicates that the flopping and biting occur when she is directed to do something she doesn’t want to do or is thwarted in her pursuit of desired items/ activities.

In the field of Applied Behavior Analysis, behavior is treated by it’s function. Rather than a universal response to a developmental age, the purpose of the behavior is used to determine programming. I do believe that the behaviors are being reinforced as the immediate consequence serves the function of avoidance/escape and the behaviors increase in frequency and intensity after (the definition of a reinforcer). In addition to the skill building (appropriate communication, receptive comprehension) and proactive interventions (prevention, reinforcement for following directions, visual supports), it is important to interrupt the reinforcement she is getting for these behaviors. We deliberately implement reinforcement contingencies to teach and strengthen behaviors. Similarly, It is important to interrupt unplanned contingencies that serve to strengthen maladaptive behavior.
Prompting is a large component of the errorless instruction (DTI) that has been successful with Evie. Prompts are used to set her up for success and reinforcement. This is the goal in all learning situations. It is not to force her in isolated situations, but to implement evidence based procedures to teach skills. Data will be collected to monitor progress. I will compose a draft of a behavior plan, including proactive programming, to review with the team.

Several emails later from me:

I never meant that Evie should be allowed to refuse certain requests indefinitely. My experience with Evie is that giving her a second and then immediately transitioning into the activity is very effective. If staff is rescinding requests, even if only occasionally, I believe that does, indeed, reinforce negative behavior.
I do not feel that biting or interrupting the education of other students is ever acceptable. However, I maintain that I do not want my child to be physically forced to comply with other requests at this time before giving her an opportunity to collect herself–like ten seconds is what works at home. I think it is essential that we bear in mind that Evie’s autism diagnosis is a secondary diagnosis to the constant discharges she has in her brain. It was explained to us by the child development clinic (Susie was present for the evaluation and diagnosis) that these discharges cause autism like characteristics. Therefore, the requests that are made of her may not be able to be realistically met–she needs time to process demands. I think we need to start at the beginning–identifying stressors, perfecting the procedure, and collecting enough data to allow an accurate interpretation.
I want to work collaboratively with this team. But I must be honest and let you know that I see a lot of backsliding this year that I can’t help but attribute to the fact that we haven’t stuck with what works with Evie–the schedule, the breaks that her neurologist indicated, etc. In a lot of ways, I am concerned that effective parts of Evie’s program from last year have–aside from speech and language–have been abandoned resulting in a change in her behavior. I feel that further discussion is definitely warranted–I would like to sit down as a team with last year’s team to discuss her program last year and the outcomes of the ILEHP program that we participated in.


That was when it really started to dawn on me.  Something is not right here.  Evie was a happy kid–did not engage in physical aggression at home–or very rarely.  When she started getting ABA’d, the physical reactions started.  As time went on, I became more and more convinced that ABA was at the root of her unhappiness at school and the physical reactions in which she was engaging.

The Autism Specialist and I argued back and forth over this for almost two years.  She made statements that she was “not comfortable authoring a behavior plan” which allowed Evie the space, bodily autonomy, processing time, etc that I asked for.  And that her neurologist indicated was essential with regard to her medical conditions.

Most of our arguments centered around Evie’s autonomy, around the fact that the Autism Specialist repeatedly told me that ABA helped with Evie’s “deficits caused by Autism”, around my demands that she not be forced to make eye contact, and forced to have “quiet hands” or “table ready hands”.  Mostly we disagreed over whether Evie was exhibiting “negative behaviors” (her opinion) or whether Evie was communicated (mine, her neurologist’s, and psychiatrists).  And what on earth was the purpose of ABA—the title of this series:  Touch Nose.  Gummi Bear.

For the longest time, I didn’t really have the words for why ABA was not feeling good.  And then I read this.  And it REALLY didn’t feel good.  I wrote, my most popular post, to date, The Cost of Compliance is Unreasonable after reading Sparrow’s post.  At this time, my Autistic friends found me and rescued me.  After talking with them, I became more and more adament

Then I went in and observed for a day.  And that was point break.  You can read about that here.  To sum up, Evie’s WAS communicating–that she had a psoriasis patch that was itchy, that she was thirsty, that she needed space.  These were communications were ignored because the behavior they manifested in were undesirable.

At the end of the 2012/2013 school year, Evie had not made meaningful progress.  Again.  We asked that the Autism Specialist be removed from the team.  We were left with a team of people, with whom we don’t alway agree, but are willing to forgo the parts of ABA that are harmful, look at Evie’s behaviors as communications, and explore other ways to help Evie make educational progress.

We’re still waiting to see how she progresses educationally.  BUT, Evie is so happy this year.  The child that we see at home, is also the child that they see at school.  I have no doubt that the fact that she is not being subjected to ABA is the driving reason for the change in her temperament.

K. from Radical NeuroDivergence Speaking is, coincidentally, doing a similar series which I encourage you to read.  Indistinguishable from Peers-an Introduction.

the cost of non-compliance is unreasonable

In January, I wrote a post about the cost of compliance training.  The unforgivable price that our children pay when forced to be compliant.

It turns out, that the cost of non-compliance is also unreasonable– unconscionable.  Well, it was for Issy Stapleton.  Her mother, Kelli, attempted to kill her last week.

I’ve been reading Kelli’s blog.  Listening to an interview.  And reading comments left by those who allegedly worked in the Stapleton home as service providers to Issy.

If you’re reading this.  You’ve seen the videos.  The first one was little more than Kelli running around hysterically crying–I’m not going to comment on that.  But about this video, I have much to say.  Especially after watching it in context on her blog.  Particularly this part

Carly, Issy’s behaviorist, was there to make sure I said and did the right things. Basically, I just had to give her tokens for having ‘quite hands and feet’ and redirect her when she started perseverating(you know, getting stuck) on certain topics.                  

We walked into the classroom.  Issy was so happy to see me (and I her!).  I told her I was there to be her worker.  I sat down next to her and started to work on a coloring page.  Issy started perseverating, I redirected.  She got physical…

I found it very striking that the video started with Issy’s physical reaction.  We see from Kelli’s words that a few things happened.  Mainly Issy was non-compliant.  Was she reacting to being told that her own mother was her “worker”?  Being coerced into having “quiet hands and feet”?  What does it look like when Kelli says, “I redirected.”

Autistic adults routinely rail against the inhumanity of being told to have quiet hands and feet.  Being forced to be still when their bodies need to move.  Many suffer PTSD–partially from “quiet hands and feet.”

I’m morbidly curious about the perseverating and subsequent redirection.  It is suspicious that this part of the video was edited out.  I suspect that it was a physical violation of Issy’s bodily autonomy or the threat of such violation.

The video, itself, does not lead me to believe that this is an inherently violent child.  I see a child who is outnumbered by adults and has no escape route.  I see her cornered and lashing out.  After I see adults overpowering her and restraining her, I see her physical reactions escalate.

I believe, at the very core of my being, that Issy had been subjected to abusive and aversive interventions for years.  Therapies which violated her person and punished her for non-compliance.  By Kelli’s own admission in this interview, she suspected that Issy’s physical reactions were related to ABA therapy.  This is in response to the interviewers question about who the violence was directed towards.

It was always directed toward me.  Her um anger and aggression.  Always toward me.  I wondered if that was a consequence of doing a Lovaas replication program.  Because I’ve been in her face since before she was two years old.  It was always touch your nose.  Touch the apple.  Do this.  Do that.  And you know, um, maybe this is sort of a natural consequence to that.  I’m not really sure.  But I’m sure at this point it is some sort of shaped behavior.  Because sometimes even making eye contact with her will trigger a response.

Anyone who is familiar with the Lovaas ABA model, knows that Lovaas relied heavily upon aversives and punitive corrections to undesired behaviors–including failure to make eye contact and stimming.  A mere mention of Lovaas will trigger many of my Autistic friends.  We are talking strict, by the book, old school ABA.  I have many problems with ABA as it is commonly practiced, but the Lovaas model is truly reprehensible.  It is unquestionably abusive.

Issy was subjected to this for ten–ish(?) years at the time of this video according to her mother.  I have no doubt, that Kelli was right.  That this was one of the things at the root of Issi’s physical reactions.  Especially since the reactions were mainly directed at her mother until about a year prior to this interview (according to Kelli).  Since Kelli, was Issi’s “worker”, this makes sense.

Further, there have been multiple allegations of Kelli’s abuse towards her children, levied by individuals who apparently worked in the Stapleton home.  Normally, I wouldn’t put a lot of store in internet comments.  But these feel markedly credible when those commenting are providing contact info for coming forward with information.

To those care givers who would help be Issy’s voice and get justice for what was done to her please contact D/SGT House with the State police post (231) 775-6040. Several past caregivers have stepped forward and already given statements on Issy’s behalf. We need everyone to step up and help Issy.

On an earlier post I posted a number for ex-caregivers who wanted to help issy. I typed the number wrong it D/SGT Travis House (231)779-6040 he would like to speak to any caregivers. Some of us care givers have already given statements on Issy’s behalf.

Kelli regularly used hateful and abusive language on her blog to describe her daughter to the world.  If this is what she puts out to the world, I can only imagine what she kept hidden.  And according to many of the comments on this news piece, she attempted to keep much hidden.

I’m sure that we will never know exactly what went down in the Stapleton household.  But nothing that I’ve read, heard, or seen leads me to the conclusion that Issy is inherently violent.  Nothing.  I believe that Issy has always been the only victim.

We’ve seen the writing.  We know she was subjected to Lovaas style ABA which is widely criticized for being punitive and for employing aversives.  This is abusive.  We’ve seen some heavy allegations of abuse which are, apparently, being investigated.

We’ve hear the story of a child, who easily overpowered her mother.  Yet, somehow, Kelli was able to contain Issy in their family van while she attempted to exterminate her daughter with carbon monoxide poisoning.  Am I the only person with whom this does not jive?

I don’t believe that Issy was violent.  I believe that she had physical reactions to the abuse she suffered for being non-compliant.  I believe that Issy almost paid the ultimate price for her non-compliance when her mother tried to kill her.

The cost of compliance is unreasonable.  The cost of non-compliance can be even more unreasonable.

Rock Bottom: Autistic Hate Culture

I was talking to a like minded parent friend via pm the other day.  She pm’d me after reading my post, yesterday.  And she was, understandably, distraught that friends of Kelli were trying to blame Autistic people for this tragedy by asking, “Where were you?”

I agreed with my friend.  Friends of Kelli have two choices.

They can either acknowledge that they have blood on their hands.  They can acknowledge that they have created and nurtured a culture of deep hatred for Autistic people.  They can acknowledge that these Autistic hating ways are what lead to Kelli’s attempted murder of her own daughter.  And that they too are already on that very slippery slope which lead to the worst case scenario for one of their friends.

Or they can try to make this about anything but murder.  They can pretend that this is about lack of services.  Mental Illness.  PTSD.  Autistic people not helping way back when.  Anything but the fact that they were part of the support system, the culture, that not only allowed this to happen but precipitated it.

But either way.  This is rock bottom.

Some of Kelli’s friends have gone all out defending the murder and trying to blame anyone and anything but the people that are actually responsible for this attempted murder–Kelli and those that are part of the Autistic hating faction.  These people seem not to realize that their bigotry and ridiculous are showing.

But I have to believe that there are others at rock bottom who are not actually the bottom feeders–they’ve just been sucked in and down.  That they will recognize that they need to climb out of this pit of wretchedness and despair.

And it is to these people that I want to say…

There are people waiting with hands outstretched.  Eagerly waiting to help you pull yourself out from that abyss.  We’ve been here waiting the entire time.  Waiting.  We know that the bottom feeders will continue to claw at your legs while you ascend–try to pull you back into their sordid pit.

I know it takes courage and strength to leave that place.  People can learn to take comfort in misery when it is shared.  But you can leave.

I’m afraid for you.  Really afraid for your child.  Because there will be more Kellis.  There will be more Issys.  But if you start climbing out now–reaching for a place of acceptance and love and all of the honest to goodness happiness that comes with it, I know it will not be you.  It will not be your child who is next.

I think that you know this to be true.  If you are uncertain, please look at what I am saying my life is like.  What other families, that have chosen love, have said that their lives are like.  And then look at Kelli’s blog.  Look at the words of those that are part of the hate culture.  Despairing over Autistic children.  Miserable.  Jealous.  Unhappy.

You’re already at rock bottom.  Is that where you want to stay?  Or would you like to come up here?

 

 

Where was I when Kelli needed help?

So, as an administrator of Parenting Autistic Children with Love and Acceptance, I’ve seen a lot of questions from parents asking, “Where were you when Kelli Stapleton needed help with her daughter, Issy?”  And, “Did you donate to Issy’s treatment?”  These questions are asked of Autistic activists and parents of Autistic children who are outraged at the attempted murder of Issy by her own mother, Kelli.  Those that have zero empathy for Kelli.  Those that believe that parents that would murder their own disabled children are as accountable as parents that murder their own non-disabled children–and that the prosecution of these criminals should reflect that without exception.

Oh no, you do not get to lay the blame of this massive tragedy at my feet or at those of Autistic activists.

Let me start by telling you where was.

I was first, and foremost, taking care of my own children.  Taking care of myself.  My children will always come before everything else.  If that makes me a bad person,  so be it.

I had never heard of Kelli until Kelli tried to kill Issy.  But had I heard of her, I can tell you that I would not have “liked” the Facebook page which was designed, as best as I can tell, to raise funds for ABA treatment for Issy.  I would have especially not liked the page if I had seen this video of Issi having reacting to being told to have “quiet hands and feet” after her own mother told her that she was going to be her “worker” for the day.  No, no I would not like that.  I don’t like that.

Had I known of Kelli and Issi, I might have tried to reach out with suggestions that, perhaps, the intervention style employed, ABA, was one of the causes of Issy’s physical reactions.  But honestly?  Probably not, because I have made suggestions of a similar nature to parents in Kelli’s clique and have been attacked.

Had I known of Kelli and Issi, and seen Kelli’s blog, I might have suggested that Kelli not use language which degraded and humiliated Issy.  I might have indicated that I thought it was extremely disrespectful to Issy, for Kelli to regularly characterize her as “violent” on her blog.  I might have said that the language she used to describe her own daughter was hateful.  But I suspect that I could not have worded this in a way that would have incited unrest from that same clique.  So I probably would have decided against that because I haven’t been able to do that effectively in the past.

Had I known that Kelli was on the brink of trying to kill Issi?  I would have reported it to authorities.  I would have done anything in my power to stop that.  But as I did not know Kelli, I will have to leave that question at the feet of her friends who had a more intimate understanding of what Kelli was thinking.

As far as Autistic activists go…I cannot account for their time and do not feel that this is the question that we should be asking.  I know that many adult Activists spend countless hours warning against the dangers of abusive therapies and interventions.  I know that they spend countless hours responding to blog posts similar to Kelli’s and are met with angry hostility.  And I know that adult activists, many who live on disability, do not have funds to spare for treatments for a child.  Especially the same treatments that they received as children which caused them PTSD–from which they continue to suffer.

So I am reading these questions.  And deleting them on my facebook page.  And I am reading blogs written by Kelli’s friends and the comments that folks are making on these blogs.

And I am disturbed.  Disturbed to see so many parents of Autistic children saying, “this could be me.”

So what am I doing about that now?  Well I am posting a list of ways for parents who are thinking about harming/killing their children to seek crisis intervention on my parent page.  Because, yes, if you can actually see yourself in this situation–one where you can imagine yourself actually harming your own child, you are already knee deep in crisis.

And when I come across these comments, I will report them and hope for the best.  I’m not a crisis interventionist.  That’s all I am qualified to do.

I wish that I could do more.  But unless I know the person, that is the best I can do.  And I probably will never know a person that would even conceive of killer her child.  Why? Because I tend to choose my friends carefully and would be murderers probably won’t make the shortlist.

So to those asking where I’ve been, I hope that answers your question.  And I hope that the fact that I have taken the liberty of answering where I will be when I encounter comments of those that are already on the road to killing a child will render future questions, from friends of attempted murderers attempting to lay the blame on anyone but the murderers and those that had intimate knowledge of the plight of endangered children, unnecessary.

I hope that friends of Kelli will stop asking why people are trying to “vilify” Kelli and come to understand that Kelli is already a villain.  No vilification necessary.  And maybe, just maybe, they will be in a better position to spot other potential villains among their ranks.

the road to killing a child

A mother cannot make the leap from unconditional love for her child to the attempted murder of that same child.

CANNOT.

You cannot love your child and kill your child in the same moment.  You cannot love your child one moment and kill your child the next.

To kill your child requires an absence of love.

And it is not just a void.  Not just a chasm.  Not just a gaping hole where the infinite love should be.

The empty is filled with all things hideous and heartbreaking.

And it is a place.  A place where you have always been or at which you arrive.

I wouldn’t know how to get there if I tried.  Most parents don’t.

But I watch other parents go there.  Other parents who have Autistic children not unlike my own Autistic child.

There are many parents of Autistic children on this unrighteous journey.  I’ve seen them traveling.  Even before I realized where they might end up, I knew they were going the wrong way.

And I’ve called out to them–that they are on the wrong path, that they’ve lost their way.  That they were going to an unfaithful place.  That their children were in peril.

Most could not hear me over their fellow travelers who were shouting back at me.  Insisting that it was me who was on the wrong path.

“Sanctimonious!” they shout, because I love my child as she is.

“Self-righteous!” because I am so certain that I am on the right path–the path of unconditional and unwavering love.

“Judgmental,” because I dare to question the perilous road they have chosen to travel, seemingly, without a thought for the harm that they expose their children to with the words they use to describe their children.

The final act of violence, that is the last leg of the journey.  Most never get all the way to that unfaithful place.  But the steps they take towards it leave muddy footprints fossilized on the souls of their children.

They lament that they are making this march.  And they do it loudly.  Publicly.  They begrudge their children for the financial cost of this trip.  But they insist on purchasing the provisions like behavior modification and aversive therapies which drain their bank accounts and their children’s spirits.

I hear them moan about the soccer games they will never attend, the words they will never hear, the parties they will never be invited to because they had to take their children on this trip instead of the one that they’d been dreaming about.  They say that they are going to Holland instead of Italy and that they are content with that.  But the bitterness burns in their eyes as they watch others board the plane to Italy.  And for all they claim to fancy Holland, that’s not where they are and that’s not where they’re going.  They’re going to that unfaithful place.

Some claim to be battle weary road warriors.  Crusaders.  Because they lack the courage and humanity to be peaceful pilgrims.

I watch them go by in droves.  In their corporate sponsored caravans–all lit up blue and covered in puzzle piece logos.  Their children are exhausted from hauling all of those expensive provisions for 40 hours a week.

Parents!  You are well on your way to that unfaithful place.  And you have chained your children to your caravans like animals.  And when you travel this way, you exhaust your children and yourselves.  Those chains devalue.  They degrade.  They dehumanize your precious child.  When you proceed on this path, you create the conditions in which unrest thrives.  The environments in which your children have not choice but to fight.

Parents!  Please travel with us.  This path is safer.  Parts of the journey are tiring.  But we are joyful on this passage.  My child is not bound and dragged on this course.  We hold hands an walk together.  Often my child knows the way better than I do, so I follow her.  When she stumbles, because there are indeed obstacles, I pick her up and carry her in my loving arms.  And she trusts that I will do her no harm.

This is the fork in the road.

You can keep progressing to that unfaithful place.

But this path.  This is the way to peace.  And love.  And happiness.

Abandon your caravans of blue.

You won’t need most of those costly provisions when you choose this itinerary.

The light of your love will illuminate the pathway.

You’ve been on a detour.

It can end.

And this over here, this is a little known shortcut home.

 

driven to murder

There is a story I keep hearing.  It is about a parent/caregiver murdering or attempting to murder her child.  The parent’s name changes.  The child’s name changes.

But the rest of the details of the story pretty much remain the same.  Tired mother/father/caregiver.  Not enough support.  Not enough services. Unmanageable/aggressive/violent child.

The caregiver is left with no other option but to kill the child.  We should all feel sorry that this caregiver was driven to such ends–who wouldn’t be?  Dealing with an Autistic child is misery–a prison sentence and no one helps.

That’s what I keep reading.

And I’m OUTRAGED.  And if you’re not outraged by this appallingly predictable script, then you’re part of the problem.  You’re PART of the story.

First it was Alex.  Actually there have been countless before Alex.  I’m talking about the stories I’ve read in the past week.

Poor Alex’s mother.  Alex was awful.  Alex was Autistic.  All of the quackery in the world couldn’t cure Alex.  So his mother tried to kill him with sleeping pills.  That didn’t work so she stabbed him 4 times.  In the chest.  Then she slit her child’s wrists.  Did I mention that this mother turned down several different offers of help?  The practical ones that came in the form of not curing her child–but caring for him. Some label this a mercy killing.

Then today, there is Issy.  Her mother tried to kill her after sharing the most intimate details of her child’s life with the world–on her blog, in the media, where ever.  Branding her violent–for life.  Posted her picture.  No privacy for that child.   And then she tried to kill her.  And failed.  Issy will likely have permanent brain damage as a result of her mother’s vicious attack on her person.

Let’s be very clear.  Lack of services did not kill/attempt to kill either of these children.  They were both attacked by their mothers.

There is ALWAYS an alternative to killing.  Always.  They CHOSE to kill their children.  Would these children not be better off as wards of the state than dead?

Spinning this story to even imply that the child’s nature is to blame is unimaginably horrific.  Suggestion that these caregivers deserve the slightest bit of empathy for brutally attacking their children is infuriating.

Mothers that kill their children are as cold-blooded as murderers come.  To desecrate, the mother/child relationship, the most sacred of relationships is to sink to the lowest depths of evil.

And I don’t hold people that justify murder or empathize with depraved child killers in much higher esteem.  Because that tells me that you could conceive of it, yourself.

Mothers that love their children don’t kill them.  It is that simple.  And people that have the smallest iota of humanity, they don’t make allowances for the mothers that do.

Decent people do not partake in any form of child murder victim blaming.  They don’t.

cutting the apron strings

This blog has been focused, mainly, on Evelyn.  But there is also Maxine.  Who is the other half of my world.

A friend that we just met in person for the first time said, “Maxine is sunshine.”

And that’s just it.  She is sunshine.

I’ve, more or less, spent 24 hours a day with Maxine since her arrival.  We play together.  We eat together.  We sleep together.  We’re pretty much always together.

I’ve all but designed the world in which she has lived to date.  I’ve felt good about the things that I’ve let into that world and the things that I’ve kept out.

She believes that she has choices and that her, “no” will always be respected.

She is unfazed by the fact that some people speak and some people don’t.  Some people walk and some people don’t.

She knows nothing of violence, monsters, bad guys, and evil.  Well–there was the 5 minute trial of watching “Ratatouille.”

She doesn’t know what, “fat”, “skinny”, “stupid” and “hate” mean.  Because she hasn’t heard these words.

She doesn’t have any concept of competitiveness.

I’ve poured every ounce of love and affection possible into this child.

She has bloomed and grown in the shelter of my love.

Tomorrow she starts preschool.

And I wonder.

Am I releasing my delicate flower into the elements without having given her the tools she needs to protect herself?

Yes, I realize that I am releasing her into preschool.  Two mornings a week.  A parent coop–chosen for its philosophies which are almost identical to my own.  How exposed will she really be?  I might be dramatizing just a titch.

But I worry.

You see, she understands about many things.  She discusses the food chain dispassionately.  She knows how her body works.  She knows how to keep her body safe and healthy.

But did I keep too much out of her education thus far?

There’s this total big world out there.  One that she has no idea exists.  I’m sure some of it will trickle down, even, into preschool.  I can’t help but to question my judgment in keeping it from her.  To question my personal motives for doing so.

Kind of like procrastinating doing something unpleasant.  Did I put the inevitable off for her benefit?  Or mine?

I can only hope that the sense of security which I’ve been trying to love into her will be enough to preserve her as reality starts to come into focus for her.

That the foundation of trust that we’ve built, brick by brick, doesn’t crumble under the outside pressures that are waiting for her.

That her very gentle beginnings will keep her strong.

I also really hope that she doesn’t say, “fuck” or any variation thereof at school tomorrow.