oops they did it again: Autism Speaks’ 2013 financials just released.

The numbers used to analyze Autism Speaks’ spending were taken from its 2013 audited financial statements.  The report is available on the Autism Speaks website here.

2013 as love expSo Autism Speaks finally released its audited financial statements.  I wish I could say that I am surprised by their brazen irresponsibility.

Instead of rehashing their sordid history, I’m just going to get tacks.

Because really? What can I say that hasn’t been said thousands of times over?

Read it and weep folks.

Lets start with the consolidated expenses shall we?

Ugly truth

Family Services Grants & Awards:
Don’t forget, this is the ONLY portion of Autism Speaks expenditures which directly support Autistic people and their families.  A whopping 4% of Autism Speaks expenses were incurred directly supporting Autistic people and their families.

Did you get that?  Year after year the largest charitable organization purporting to serve Autistic people and their families thinks it it is acceptable to spend under 4% of its budget on directly supporting Autistic people.  And yes, I said “under 4% because I round up when calculating this using the consolidated expenses on their financial statement.

Text reads:  What is wrong with this picture.  Expense	Total Spent	Percent Total  Advertising and donated media	$52,229,994	43% Everything else	$25,085,273.00	21% Salaries, benefits, &payroll taxes	$23,300,191	19% Science grants & awards	$15,300,709	13% Family service grants and awards	$4,631,690	4% Total Expenses	$120,547,857

Advertising and donated media
I’m terrible at math.  But according to the 2012 consolidated financials, Autism Speaks spent $2,212,520 on advertising.  In 2013 it spent $52,229,994.

Is that not a 2,260% increase in budget?  That’s outrageous even without considering the relative pittance it has spent on providing meaningful supports to Autistic people and their families.

We’ve all seen the damage that Autism Speaks does to Autistic people and their families with their brand of “awareness” advertising.

Salaries, benefits, and payroll taxes
$23,300,191.  
Need I say more?  We have already seen the salaries top executives are paid on previous 990 filings.  Autism Speaks has not published its 2013 990 to date.

It is also notable that there are several “related party transactions.”

NOTE 9 SPECIAL EVENTS - COLLABORATIVE ARRANGEMENTS (continued) The Atlanta Walk had net proceeds of $542,000, 50% of which was granted to The Marcus Institute, the co-founder of which is an AS Board member. The Westchester/Fairfield Walk had net proceeds of $968,000, 15% of which was granted to the Center for Autism and the Developing Brain at New York Presbyterian. An AS Board member is on the Board of Trustees of New York Presbyterian Hospital. The Winter Ball for Autism had net proceeds of $2,682,000 in 2013, 50% of which was granted to the New York Collaborates for Autism, the co-founder of which is an AS Board member.

And there are more related party transactions where institutions affiliated with members of the Autism Speaks Board of Directors and members of management received funding.
Five members of the Board of Directors of AS and two management employees are affiliated with institutions that received funding from AS. At December 31, 2013, AS had grants payable and commitments to these institutions totaling approximately $5,532,344. During the year ended December 31, 2013, AS’s expenses included approximately $3,669,960 related to awards granted to institutions affiliated with an AS Board member or management employee. Certain members of AS’s Scientific Advisory Committee and Scientific Review Panel, which are involved in the grant appropriation process, are also associated with institutions that receive funding from AS.

Science grants & awards
Science and grant awards spending was actually slightly less in 2013 than it was in 2012.  It went from $15,790,797 to $15,300,709.
Their science is scary in that it aims to eliminate Autistic people.  Of course they would continue to refer to them as a “crisis” and “puzzle pieces” in spite of being harshly criticized for their treatment of Autistic people.
This is from the mission statement on the 2013 Annual report they just released with the financial statement.

Our Mission We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families, and society and we work to bring hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.

Autism Speaks continues to blatantly disregard Autistic people.  They also brazenly disregard the criticism they’ve received over their financial practices, treatment of Autistic people, and usage of negative rhetoric.

They lost two corporate sponsors in 2014–that we know of after intense pressure on the corporate sponsors to sever ties.  Both Panera Bread and Build-a Bear-Workshop lead the way in what must become a mass corporate disassociation from Autism Speaks.

Autism Speaks tells us year after year and time after time that in all things, they have no intention of changing.  It’s time to breath some life back into our grassroots #BoycottAutismSpeaks movement.
Image description:Text reads: If you donate $100 to Autism Speaks, how will it be spent? According to the 2013 financial statement just released, it will look like this: $43 will be spent on advertising and media. $19 will be spent on salaries, benefits, and payroll tax. $13 will be spent on science for cure, prevention, etc. $4 will be spent directly supporting Autistic people. $2 will be spent on travel, meals, catering, etc. $19 will be spent on everything else. Is this what you have in mind when you donate? #boycottautismspeaks

Tongue in cheek: Autism Parenting Olympics

autism olympics

Some of you might have heard that I am trying out for the Autism Parenting Olympics team.  I think that I have a really good chance of standing on that podium or getting darn near close to it.

If I medal, I will be sure to get endorsements from all of the martyr mommies out there, so I am really excited about that.

But the real prize?  It is the honor of having a child who is Autistic enough for me to be able to speak with authority on the topic of effective parenting strategies.

I know that I will have to sacrifice a lot in order to be a contender–my child’s privacy, dignity, trust, and a little lotta bit of her humanity.  But it will be so worth it when the other parents pat me on my back and tell me that I really do have the hardest life of any parent because I will have proven that I have the most Autistic child in the Universe.  And beyond.

I have some definite strengths which will be easy and high scoring points.  My child is non-verbal.  Score BIG!  She needs around the clock support.  Score!

She has medical co-morbids like Epilepsy which will help me rack up some points.  I do need to work on using Autism and her co-morbid conditions interchangeably if I want to receive top marks.

She has a history of sleep disturbances but has been sleeping well lately.  With any luck, she will stop that so I can score the maximum sympathy points.

My biggest weakness is that poop smearing is not a problem for us.  However, she does enjoy smearing yogurt.  I wonder if I could parlay that into at least a few points if I don’t let on that I encourage this sensory exploration?

I’m training rigorously by reading lots of blogs written by previous medal winners and am even watching other contenders train on their blogs.  I have to admit, they set a really high bar…the level of exploitation is absolutely exceptional.

But I am confident in my ability to overcome this obstacle of being happy.  Especially if I throw  20+ hours of expensive abusive therapy into the mix.

Please wish me well on my road to Autism Olympic gold!

a thing experts don’t talk about: Auditory Processing Disorder

****All images in this post should be accessible and coded with alternative text.  Please let me know if you have difficulty.

image of street signs named: "unsure" "confused" "lost" "unclear" and "baffled"

Auditory processing refers to the way that sound is processed after it is heard. A person with Auditory Processing Disorder may have difficulty interpreting sounds they hear–often related to speech. The structure of the ear can be typical while the person experiences varying degrees of difficulty making sense of the sound.

I’ve been giving a lot of thought to raising happy and safe Autistic children.  Happy and safe children make parenting them a lot less stressful.  So I’m raising a topic that I think plays a major role in the lives of many Autistic children (and adults) unbeknownst to the parents.

It is important not just because it affects communication abilities but because it can lead to extreme frustration and other emotions which can result in unexplained behavior.

Auditory processing difficulties.  I don’t know why there is not more of a focus on this as a frequently occurring disability secondary to Autism.  In my experience it doesn’t even seem to be on the radar of most professionals.

I will share our diagnostic experience and then some really important things that Autistic adults shared with me about APD.

Special thanks to H for sharing his images.
Read more at Thirty Days of Autism.

 images from "Dear Teacher: A letter from H" of Thirty Days of Autism

images from “Dear Teacher: A letter from H” of Thirty Days of Autism

Our experience getting Evelyn diagnosed:

Evelyn “passed” her newborn hearing test.  When she was about three, we started to notice that she didn’t seem to hearing when we talked to her.  We wondered if she was experiencing hearing loss and had her tested again–even though we noted that she heard other noise.

She “passed” the screening again.  Her neurologist thought it was worth having an ABR hearing test.  This is done under sedation in young children and tests the way the hearing nerve responds to different sounds.  She “passed” that too.

 "Dear Teacher: A letter from H" of Thirty Days of Autism Click Image to visit Thirty Days of Autism.

images from “Dear Teacher: A letter from H” of Thirty Days of Autism 

After she “passed” that, we were lead to believe that she was simply ignoring us.  That this was a behavior.  That it needed to be corrected…ABA was apparently the only way to do it.

Fast forward to last school year.  Evelyn was seven.  I went away for several days which I don’t normally do so it was a big deal.  When I came back, Maxine met me at the door and we had a loud greeting.  Evie was sitting on the couch playing with her ipad.  She didn’t even look up.  I started greeting her excitedly.

She didn’t look up until I bent down in front of her and put a hand on her knee.  She didn’t know I was there prior to that.  I know this because the moment I touched her, she lit up, threw herself at me, and didn’t let go for several minutes.

She wasn’t ignoring me.  She didn’t process what she heard.

Because I knew nothing of the possibility of auditory processing difficulties, I had a difficult time wrapping my brain around what was happening.  We knew she could hear because she had all of the tests.

Over the next several weeks, I began “testing” her.  I would offer her something desirable.  She wouldn’t respond without a visual cue.  These were words that I knew that she comprehended.

I raised the question at a school meeting.  One of the people on her team responded that the team agreed that Evie didn’t seem to process language.  I was floored.  How had this not come up?  How was she not receiving accommodations for this?  They told me that only a neurologist could diagnose her with “central auditory processing disorder.”

We went to her neuro.  The diagnosis process looked like this:  I told him what we’d experienced.  He said she has Central Auditory Processing Disorder.  He wrote a letter to school saying that she needed accommodation around this disability.

When I think of the ramifications of our failure to detect this disorder, I could cry.  Not just the ramifications on speech, language, and academics.  But the assumptions everyone made about the function of her behavior and all the ways Evie was offended by those assumptions.  This was not Evie being stubborn. This was Evie being disabled in a way that no one seemed to acknowledge as worthy of support.

Lots of Autistic adults were kind enough to share their experiences around APD with me.

As I mentioned, a person could have perfect structural hearing and still experience APD.
You can read Alex’s blog here.
The thing is, I don’t have hearing problems. I can pick up faint sounds like the clock ticking at home. I score in the average range in hearing tests. But if somebody says something while the TV is on – or there’s music playing or other conversations going on around us – then although I can hear all the sounds, I can’t separate them very well. It’s a problem with processing the sensory input and I find it hard work and very frustrating, so I often keep out of conversations in noisy environments. In fact I prefer to avoid noisy social environments altogether.

So what happens?

A Greater Boston Area Attorney, Mandy, said:  "APD is an inability to prioritize sound."  There is a white figure holding a brain and a megaphone in the lower left hand corner.

Imagine trying to process what someone is saying when every other sound in the room is competing with that speech.  You are unable to block out the other sounds enough to comprehend the speech.

Read Chavisory’s post here.
-Auditory processing issues:  The way I filter and understand auditory information is different…and hard.  I don’t seem to naturally prioritize human speech; I have to consciously attend to that.  I don’t have perception of background vs. foreground noise; I hear everything at what a perceptive sound designer once called “equal presence.”  I also don’t conglomerate background or ambient noise into a collective din…I hear every single separate thing.  I have visual hearing…if I don’t have a concrete visual or at least a mental visual reference for a word or sound, I *cannot* differentiate it.  Basically, if I haven’t seen it before (and not just heard it before), I have a near-zero chance of understanding or being able to differentiate the sounds or syllables.  I hear in vowels, as I’ve read some other autistic people do…I mean I hear consonants, but I don’t process and translate them as readily and often have to more deliberately “patch” them in to my understanding of what’s being said to me.  The acoustics or reverberance of a room can profoundly affect how well I can hear—and therefore mentally function—in it.

 

Jennifer Muzquiz is an Autistic activist.  She said:   It is very difficult for me to process spoken language when I am lacking spoons or when there is a requirement for overwhelming sensory processing. If there are distractions (other noise, something catching my eye, something else on my mind, etc.) or I'm not in a place where it's appropriate to stim in order to regulate my focus, speech is the first thing to go... both the ability to listen and to be verbal. I can't carry conversations or even be attentive to someone speaking to me. It makes me very self-conscious and starts a rapid downward spiral to feeling like a failure, because I can't "function" as expected. This causes me to lose even more focus and switch to introvert mode, which blocks out all ability to listen/speak. Bring on the agoraphobia! It is important to note that auditory processing abilities are not static.  They can vary depending on the situation and day.

Amy blogs at Non-Speaking Autistic Speaking.
Amy Sequenzia is a non-speaking Autistic Activist.  She said:   I don't process spoken language most times after seizures. Sometimes for a long time. If I am in pain, like when I had gallbladder pain, I could not understand anything it was said and typing was only possible using one or two words at a time. Overwhelming places make me shut down to protect myself. The times I was being physically abused also made me rely on the visual.

Sparrow blogs at Unstrange Mind."It gets so frustrating when people don't understand or believe what hearing is like for me. Especially with the CAPD because it gets better and worse, depending on environmental noise, stress levels, etc. and society still has zero concept of a disability that is not static."

I would feel so incredibly frustrated if people attributed manifestations of my disability to behavior.

Lei blogs at Autistic Times Two.A lot of people think it's avoidance or me being rude or my favorite "being hysterical", but putting those kinds of demands on me when I already asked you to stop is actually pretty rude, I think. #socialskillsforallistics

And then there are the people that presume that you’re incompetent.

Cynthia blogs at Musings of an Aspie.
apd cynthia 1

Also from Cynthia’s post on the topic:There is a significant disconnect between my verbal skills and my intelligence or literacy or whatever you want to call it.

Every Autistic adult I spoke with seemed to experience some level of auditory processing difficulty.  It stands to reason that Autistic children experience the same.

Children might not have the ability to communicate this disability.  And it might be difficult for adults to pick up on because it is not necessarily constant.  And if the hearing tests come back “normal” and professionals don’t seem to be talking about it….

We are left with an unaccommodated ability which is often written off as behavioral issues.
And of course there is the frustration that is certain when a disability is not supported appropriately which could easily contribute to “behaviors.

Failure to diagnose and accommodate APD can lead not just to frustration, but to difficulty and/or failure to make academic progress.

Say nothing of the social implications.

Auditory Processing Disorder.  It is a thing for Autistic people–including kids.

Next post, I will talk about helpful coping strategies that Autistic adults shared with me.

 

trust: i can’t

i can't

pink square with a darker pink faded spirograph. The text reads: “When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.” Kassiane blogs at timetolisten.blogspt.com

Today when I picked Evie up from school, her para educator said that Evie had “flopped” when they entered the grocery store on her community outing.  Evie’s para is new (to her) this year.  We had an interesting conversation about the incident which I think reflects a common problem in communicating with Autistic people.

Her para indicated that Evie doesn’t flop in the other grocery store that they go to.

I thought for a moment and said, that the grocery store they went to today is quite a bit brighter.  Meaning there are tons more fluorescent lights.  I explained that it was likely a sensory/neurological thing.

That Evie was communicating, “I can’t.”

Her para was very receptive to this explanation and communicated that she hadn’t thought about this as a possibility.  I am very grateful that she didn’t insist on writing the “flop” off to as a bratty protestation behavior as some educators have been prone to do in the past.

I explained to her that sometimes, it is pretty clear when Evie is communicating displeasure.

For instance, sometimes she will request ice cream.  If I tell her, “no” and offer her another cold choice like ice or a popsicle , sometimes she will “flop” in front of the freezer.  She currently does not have access to communication robust enough to argue like a speaking child might.  “Why not Mom?  It isn’t fair.  I really want ice cream” etc.  Her “flop” in this case, likely serves as that argument.

However, most of her flops communicate something else entirely.

They communicate, “I can’t” or “This hurts” or “This doesn’t feel good to my body.”

Like I suspect was  case in the grocery store today.

In my experience, educators are trained to overlook these communication possibilities.  Everything is a “protestation behavior.”

Autistic children aren’t trusted to say what they are and ARE NOT able to do.

The, “I can’t” can be especially hard to recognize because it isn’t static.  One day Evie might be able to go into that grocery store.  Another day, she might be tired, overstimulated, etc. and just “can’t.”

Evie doesn’t do much flopping when she is with me.  Usually, in fact, it is of the protestation variety (I believe it is healthy and appropriate for her to test boundaries and debate my, “no,” periodically so I am actually happy to see her do so).

I believe that there are multiple reasons that I see less flopping of the, “I can’t,” variety.
1.  I read this really great piece written by Kassiane (an Autistic adult) about part of presuming competence being not just about what she can do.

“When I tell you I cannot do something, presume that I am competent to understand my own limitations. I am not being lazy. I am not manipulating others into doing things for me. I have legitimate support needs. I have workarounds for most of the things I listed above. Slow, ponderous, time and spoon consuming workarounds, but workarounds nonetheless. But the truth of the matter is there are things I cannot do and I know that I cannot do them.”

I know Evie well enough–spend enough time with her– to pick up on her other “I can’t” communication before she gets to the flop phase.  Chances are, I would have picked up on the signs that Evie couldn’t deal with the grocery store before we got in and as such, I we wouldn’t have gone in.  I’m her mom, so a lot of that is also probably intuitive.

2.  I think it takes a long time to get to the place where reading the “I can’t” communication comes somewhat naturally.  As her mom, I’ve had the pleasure of spending most of her life with her.

3.  I trust Evie to make “I can’t” decisions.  Evie trusts me to honor those decisions.  As such, I think she pushes her own envelope when she is with me at times.  Probably because she knows that the moment she communicates, “I can’t” I will likely understand and swiftly respond.

4.  At home, there is a great deal less pressure on Evie.  We are more relaxed.  Schedules are flexible.  Etc.  So she is less likely to become over stimulated or fatigued than when she is at school.  In short, the environment is completely different.

Autistic kids are human.  They are capable of being grumpy.  Having bad days.  Testing boundaries.  Being stubborn for the sake of it.  Of course they are.

But it doesn’t happen, nearly, to the degree that educators and parents are trained to believe it does.

Making erroneous assumptions about communication is dangerous.  More importantly, perhaps, it erodes the possibility of building and/or maintaining trusting relationships which can have dire consequences for the child and for the educator/parent/who ever.

“I can’t” is a survival instinct.  Working to extinguish an Autistic child’s “I can’t” is a threat to his/her well-being.

 

beautiful truth: i wouldn’t change a thing about my child

Image is a of a pink earth.  Text reads: "I wouldn't change you for the world.  I'd change the world for you.

Image is a of a pink earth. Text reads: “I wouldn’t change you for the world. I’d change the world for you.

Yesterday, I was scrolling through my Facebook news feed and saw that my friend, Jennifer–an Autistic activist, was upset by a blog post written by a popular blogger.  Basically, the post was calling out parents like me that don’t want to change our kids.  He says we are lying.  I wouldn’t care except for the fact that my  friend Heather refers to him as the “Prom King” of parents to Autistic kids because he has such a huge following and hero worshipers.

He relied on the tired old premise that those parents that don’t want to change their children do not have the same kind of Autistic child as he has.  Meaning “too high functioning.”

People like my daughter and Amy Sequenzia are routinely written off because they don’t speak and they need support in caring for themselves.  I’m sure that Evie and Amy (both have Epilepsy) would agree that some of the medical comorbids like Epilepsy, that are often mistakenly considered part of Autism, really do suck.  If I could take away my daughter’s Epilepsy? It would be gone in a New York minute.

But.  BUT.  Loving and accepting my Autistic child is not just something I say.  I’m not trying to convince you.  Or myself.

I am repeating my beautiful truth.

And I am hoping for your child and every other Autistic child that it will be your beautiful truth someday too.

You’re confused?  Still?   Let me help.  Again.  This is worth repeating over and over again.

I wouldn’t change my child does not mean I don’t want my child to learn and grow.
I fight for my child to be given the tools that she needs to develop and learn.  Don’t confuse my fight for her to be given the tools to access education with a desire for her to be neurotypical.  Don’t confuse my fight for her acceptance with a lack of interest in her educational progress.

Autism is not comorbid medical conditions.   Autism is not Epilepsy.  Autism is not sleep disturbances.  Autism is not gastrointestinal issues.  I like the way Nick defines Autism the best.  You can read his entire “What is Autism” article on his awesome blog, “NeurorCosmopolitanism.”

“Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.”

Wanting my child to progress is not the same thing as wanting her to be “typical.”  I want my child’s ability to communicate to progress.  I don’t care if she progresses by typing.  I don’t care if she progresses by using picture icons.  I don’t care if she begins to speak.  I don’t care if she begins to write messages in the sky–except that this is not an accessible communication tool for her.  She can progress towards goals that are different than the ones you have for your child.  And it is still progress.

I’m not acting so damn strong.  I am so damn strong.  For me, strong is knowing that I am a better parent when I use antidepressants to control my anxiety and help me sleep.  Strong is knowing that I cannot do this alone and not being afraid to ask for help.  Strong is respecting my child’s privacy and reaching out privately to those that can help me with challenges.

We don’t have “horror stories” involving Autism.  We have challenges that we work through.  We have ups.  We have downs.  We have successes and failures and all of the stuff that comes with each.  We have horror stories about how my child is treated.  Oh yes.  And we have horror stories about the ways that my words are twisted and misconstrued and taken out of context when I say I don’t want to change my child.  Yep.  Yep.

I’m not fighting insurance companies for more coverage or more services.   It is mandatory that insurance cover ABA services here in Vermont.  WE DO NOT USE IT because we wouldn’t change a thing about our child.

I wouldn’t change a thing about my child.  You don’t have to believe me for it to be true.

her quiet revolution for independence

a school age child wearing a green hoody and pink and white striped pants pulls an aqua colored backpack on wheels up a driveway covered in leaves.

a school age child wearing a green hoody and pink and white striped pants pulls an aqua colored backpack on wheels up a driveway covered in leaves.

In addition to being Autistic, Evie is physically disabled.  Because of this, I’m in the habit of doing things for her because there are a lot of physical things that she does not have the current ability to do. Unfortunately, this habit has led me to do things for her that she CAN do.

I think I do it because it is often faster or easier in the moment.  Or I worry that she will injure herself.

Over the last week or so, Evie has been sending me a really clear message.

She has been capable of pulling her backpack for several years.  She has been pulling it from her classroom to meet me when I pick her up at school for years.  Up until pretty recently, she would drop it when she saw me.  I would think, “she is tired, I will just do it for her.”

I never gave her the opportunity to pull it into school in the morning.  I just did it.  Because again, easier in the moment.

And if I am honest with myself, which is painful sometimes, because sometimes I don’t respect her physical capabilities.  Probably more like often than sometimes.  And probably more like capabilities than physical capabilities.

Since the beginning of this school year, our hands have met at the handle of her backpack more times than I can count.  She’d usually yield to me, and I would pull that backpack for her without thought to what I was telling her with this act.

About a week ago, she’d had enough.  Her hand firmly grasped the handle of the backpack–and she communicated her insistence that she would be pulling the backpack with one hand and holding my hand with the other.

A few days after this, she started dropping my hand after a second.  And then pushing it away when I initiated hand holding.  I had a few moments of panic at school.  We were, after all, walking on a sidewalk in the school parking lot.  I would have to stop myself from forcing her to hold my hand because in my head, I was thinking, “She cannot keep herself safe.”

I make a big deal about the presumption of her competence.  But when it comes to her physical competence, I’ve screwed up.  Big.  I give her more support than she needs… or wants.  I forget that all kids get hurt.  Getting hurt helps one learn about safety  The reality is that no one has interfered with her acquisition of safety skills than me.  My instinct to protect her, may keep her safe in the moment, but in the long run it is to her detriment.

Over the last couple of days, when Evie is pulling her backpack, she is not letting it go.  The side door of our garage is a big step up and down.  She is not capable, right now, of both lifting her backpack and navigating the step.  But she will not let go and let me lift it over for her.

She holds onto the handle with one hand, grasps the door frame with the other, steps over the threshold and then yanks that backpack over.  She pulls the backpack up the ramp and into the house and doesn’t drop it until she reaches her chosen destination.

Even when she is not going to school, Evie has taken to bringing her backpack when we leave the house.  And now she wants it in the backseat with her where she holds onto the handle during car rides.

The backpack may seem like a small thing.  And you might be thinking, “this lady just wrote a whole bunch about her kid pulling her own backpack.  Really?”  I’ve come to see her backpack as a symbol of her desire and need to become independent.  I think she has too.

As much as I would like to think that I nurture a sense of independence in Evie, the truth is that I’ve put my convenience and my often unreasonable fear of her getting injured ahead of her need to gain the skills which will allow her to achieve independence.

I have failed to presume competence in this way.  Failed to recognize that Evie is capable of communicating when she does and does not need my support.  It is my job to give her opportunities to grow and learn and develop.  Even if that means a scraped knee or needing to take a few extra minutes to accomplish little things like pulling a backpack into school.

Evie overcomes unfathomable obstacles every day.  The energy she puts into gaining new skills is astounding.  She shouldn’t have to fight anyone, let alone me, to practice those skills.  To appreciate the confidence that self-sufficiency brings.

I’m so proud of her for advocating for herself.  She is determined.  Fierce.  Awesome.

Love explosions.

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.