Thursday, April 13, 2017

So, My Mom Died

CN: death of a family member, talk of child abuse

I'm going to be talking about some real life stuff that I am going through.

One of the things that I tend to do when a big thing is happening in my life that I don't want to deal with is to get really busy.   I feel like I have been incredibly productive the past month.  I dug out the place for our garden and have been working nonstop in the yard.  I have been asking people if I can do graphic design stuff for them for free because I am running out of ideas for what to make for the library's social media and other places where I volunteer.  We are doing tons of home school projects and painting, making elaborate meals and having fancy cheese parties with my kid.... and basically all the things to take my mind off of life.  And I pushed and pushed until I couldn't anymore.

Last month, my mom died.  And I know it is silly, but probably something a lot of people have thought about their moms... but I thought she would be around forever.  We weren't particularly close, probably in the last few years was the most we have ever talked.  A few years ago she called me from Ohio and said "I know I wasn't the perfect mother...."  After that, we talked about once a month or so.  We'd talk about how we wished I could afford to fly home and visit, and she'd ask about my son and send him cards or the occasional check.  It was always weird though, because for most of my life I thought she did not really like me.

I think that these things were her way of saying she was sorry?  I think so.  I hope.  I don't want to get into all the details of my fucked up life story, but there was abuse.  I don't think my mother knew how to handle an autistic child, (or even an allistic one for that matter).  Especially one who did not have a name for what made her so different and defiant and frustrating.  One of the things we talked about was my chapter in the AWN book "What Every Autistic Girl Wishes Her Mother Knew", because I did not want to hurt her feelings when she read it.   She was really excited to read it and would check the website all the time to see if it was ready and finally for sale.  I told her that I would send her one of my copies and that was the last time we spoke.  I never made it to the post office.

On a Saturday night, my youngest sister called me, hysterical and saying that my mother was found unresponsive.  Later, we found out that she'd had a massive stroke.  The next night I was on a plane to Ohio.  I borrowed money from my in laws to buy the tickets and my amazing friend Court crowdfunded that, plus hotel costs and more so that I would not have to worry about paying it back while also going through a crisis.

I did not recognize my mother at first after I dropped everything at the hotel and raced to the hospital.  None of my sisters were in the room when I got there, so I had to look at her chart to make sure I had the right room.  I held her hand and told her I was there and apologized for it taking so long.  I told her that F was there and needed to see her, and she started to cry.  The doctors told me it was a reflex, she could not hear me....and I know people will think I just wanted her to hear me, but I do believe she could hear and sense us, at least the first few days I was there.   We were never the kind of family who said "I love you". (That is probably why I drive my son nuts saying it all the time to him now.)  In fact, I can't remember one time in my entire life when my mother said she loved me.  I like to think she did in her own way.  I told her that I loved her and she started to cry and cough some more.   I asked her to please wake up, I had her copy of the book.

Honestly, my time in Ohio was such a blur.  And F, he was so wonderful. God, it must have been so hard for him to sit there day after day in a hospital, later the hospice and see me so upset.    I have some pretty bad ass lifelong friends back home though, and many of them volunteered to sit with him, take him to McDonalds, play with him and basically try to give him a little bit of normal, as much as they could under the circumstances.

After the first day, the doctors told us there was no brain activity other than in her brain stem, which controlled her reflexes like breathing.  She was adamant after my dad died that she would not want to be kept alive with a feeding tube or ventilator.   We knew her wishes, but I wanted to be sure.  I know you can't be 100% sure in these situations.  But I kept asking "are you sure this is it? nothing can be done?"   Nothing could be done.

My mother was transferred to hospice but there was no room at the hospice house because she wasn't in severe distress.  After some drama when we got to the other place, which was a nursing home, where they didn't even KNOW she was getting hospice care, we managed to yell, cry and scream our way into a private room. (seriously, they were going to put her in with four other people!).  I could not leave her there.  I know what nursing homes are like.   My youngest sister spent nights there and I spent the day there.  At times, my friends, who had known my mom their whole lives practically too, would sit with her so that F and I could get a break.  But I was terrified to leave.

She was there for five days.  It seemed so much longer.   F would entertain himself on his iPad while my (adult aged) niece and I sat with her.  My sisters and I decorated her room with things from her home, letters from my dad when they were dating that she had saved, pictures, her dirt from Ireland.  She had a bag of dirt from Ireland that she carried with her.  I don't know why, but she talked about her Irish dirt on more than one occasion, so we brought it.  I read her my chapter from the book. I don't know if she heard it, I hope she did.  Because I said in my chapter that I knew she did the best that she could, and I think she did.  My mom was not really the product of a happy home herself....I don't think she knew how to be a mom.

My niece brought a big bag of my dad and mom's letters to each other from when he was stationed overseas and they had just started dating. One thing that I can say for my parents is that they loved each other and their love was so amazingly strong.  They were best friends.  The last 15 years since he died were just so hard on her.  She seemed so lost, even more than before.  My niece and I read the letters, we laughed at some of the stuff we didn't know before.  We cried at some of the stuff too.  It was hard but it was also beautiful, and I am glad we were together.

On the fifth day, waiting for my nieces and my sisters....I felt my mom's head and she was so hot.  I called a nurse, but the nurse was on break.  An aide came in and she knew.  She just knew and she took me aside and asked if she could give me a hug, which normally getting hugs from strangers is not my deal...but I needed that.  Then, mid hug she started to cry and she said "I'm so sorry, this is my first day back after taking care of my own mom who just died of breast cancer and I just feel so much for what you are going through because I was just in your place."

So, then we had a good ugly cry together.  She left the room when the nurse came in and I went to hold my mom's hand and explain what the problem was to the nurse....and then my mom died.

It was all foggy after that.  My son, he did not really know his grandmother at all. He was sad, that's for sure....and before we went to bed that night, he said "I'm so sorry for your loss, mom." and gave me a hug.  I went to put his laptop away and he had googled "things to say when somebody died".

He is the best kid.

As I said before, I do not think my mom knew how to be a mom. Sometimes I get really angry at the things that I went through as a kid.  I mean some of the things she did to us were incredibly cruel and fucked up.  But she loved her grandkids.  She loved being a grandma.

After she died, so many people told me how they remembered the things my mom did for them.  She and my dad ran a food pantry, a free meal, they helped people.  They liked to help people.  And they never asked for credit or acted like they were saviors.  I think they knew how much poverty hurts, because that's where we lived too.  So many people told me things about her, how she helped them when they needed it and did not judge them.  Friends who needed a place to stay were always welcomed in our home.  People remembered her take no shit attitude but also her kindness.

And I do think that my mother was a good person, even if she was an imperfect mom.  I used to feel a lot of anger.  And probably, I will still feel that at times because it's a lot to unpack.  Now I just feel sadness.  I sometimes wish she could have loved me like she loved other people.  I used to think that she didn't love me at all, but maybe she did, in the only way she knew how.

I saw my parents talking about injustice a lot when I was growing up.  I saw how they treated people and always wanted to help, how they really wanted to change the world.  I think maybe some of that has rubbed off on me a little?  I hope so.  Maybe that is the way I need to remember her now.   For her compassion and for her hope that the world could be better, be more fair.  And also for her take no shit attitude.  Because I like to think that I got a little bit of that from her too.


image is my mom, an older blonde woman with glasses holding baby F on a picnic bench


Monday, April 3, 2017

Revolutionary New Autism Treatment





We hear so much in the media about the “cost” of autism. Thanks to fear mongering by groups such as Autism Speaks, we know that therapies like applied behavior analysis - considered the “gold standard” of autism treatment - can cost in excess of millions and even billions of dollars over the autistic person’s life span. I don’t know about you, but I don’t have millions of dollars lying around to fix my kid!


Fortunately, I have found an alternative that will COST YOU NOTHING, is easy to implement, and won’t cause that darn PTSD so many autistic people develop from compliance-based therapies.


As the parent to an autistic kid, we want to do everything we can to make sure they have the best chance at a happy, successful life. Thanks to my revolutionary new autism treatment, your children CAN have all those things!


While most autism treatment programs focus on pathologizing every goddamn last thing your child does, the NBAA™ method allows your child to relax and enjoy their childhood. Yes! That is a thing… autistic children being allowed to just be kids once in a while! And with NBAA™, this is not only allowed, but encouraged. By shifting your perspective from being your kid’s therapist (who must create “teachable moments” in every situation) to one of a parent who is able to just enjoy their relationship with their child, you can create a loving bond which may look different than what you expected but is every bit as beautiful and real.


This program will allow you to:


- establish a warm and mutually loving relationship with your child
- give your child the tools to avoid developing PTSD
- instill healthy self esteem in your child and the ability to form loving & trusting relationships based on mutual respect with others
- not be your child’s 24-hour-a-day therapist and to refocus your energies on just enjoying your relationship with your kid
- confront ableism, instead of trying to constantly battle your autistic child like some creepy-ass WarriorParent™
- teach your child that their bodily autonomy is non-negotiable, thus making them more confident and better able to recognize and avoid abuse
- recognize that autism is an inseparable part of who your child is and that is okay.
- find supports and accommodations which will actually enrich your child’s life instead of worrying about “fixing” a person who is not broken.
- have realistic expectations for your child which are consistent with what we know about child development
- redefine what constitutes normal, success, and other arbitrary concepts which have nothing to do with happiness
- understand enforcing compliance is not compatible with presuming competence
- recognize that stimming is pretty awesome and "quiet hands" is bullshit
- discover communication comes in many forms, each as valid as the next
- become your child’s biggest ally
- save a ton of money by not being pressured to buy the NBAA™ book, or put your kid in 40 hours a week of paid therapy, or take an expensive NBAA™ training course


…and so much more!


Just listen to these parent testimonials:



“…have never used ABA on my daughter and I believe that's a large part of why we have such a deep connection. She knows she can trust me because I don't try to manipulate her or punish her. She has a lot of confidence because we have always embraced her for exactly who she is without trying to change her, and work with her to find supports that work for her as opposed to controlling behaviors. I also feel that keeping her out of ABA will help her to be safer because she knows that she is allowed to say no, even to adults and her autonomy is respected as much as possible.”

-Lana



“The benefits that I have seen in my kids are that both of them have learned to self-direct and teach themselves things that interest them. And they enjoy learning. For example, I showed my son how to get to YouTube videos of fans (which he loves). I showed him several times. Then I let him figure it out. So he learned basics about how the computer worked and how to find something online. He learned how to keyboard and spell the things he liked. And I never had to break it down and teach him in tiny pieces and reward him with a potato chip or anything like that. I just did it with him and made it fun and respectful.”
-Nadine



“We tried seeing a therapist who wanted me to use ABA type strategies. It was pretty clear very quickly that they were outdated, ineffective and dehumanizing. Ditching all those ideas was the best move we made. I realized her anxiety was real and needed treatment with medication (with her permission and full choice) and wasn't just a manipulation (as was suggested to me đŸ˜¡). We also chose a school that was not authoritarian and allows her to grow at her own pace. She is thriving with zero pressure to be anything other than herself. I've also found that a lot of "behaviors" these therapists are so worried about are natural stages for neurodiverse kids. For example I had a therapist tell me I needed to force hairwashing more or she would never have good hygiene. With time and patience and frankly doing nothing but offer her the choices she prefers she happily takes a shower and washes her hair every two weeks which is perfectly fine. It sounds cheesy but there is no better therapy than just knowing your child and helping to accommodate their needs. Seems pretty simple!”
- Jocelyn



“Trust. Camille's only done trapeze and art classes as therapy. We choose her teachers carefully making sure they will respect her neurology. The trust really came out when Camille
started trapeze, and saw me not only advocating her but supporting her own advocating. We tried ABA like stuff when she was young and destroyed our relationship so seeing her once again trusting me was amazing. Now she's an incredible confident, strong, kid who has zero issues with her neurology. She has made all the big choices in her life with incredible maturity and insight.”
- Ginger



“I have never noticed a time when my daughter has not been 100% comfortable in her own skin, so to speak. She bounces or steps from side to side when she is happy or excited, and moves/flaps her hands when talking. If someone asks her why she does it, she simply says that she wants to. End of story. She has never been shy about asking me a difficult question or talking to me about unpleasant experiences, which tells me that she trusts me and knows I will listen and help her. I believe she knows that she is loved unconditionally and free to be herself. She is confident and proud of who she is, at just 7 years old - which is pretty great to watch.”
- Amy



“ I have not used any therapy. I just trust my gut in parenting my son. He is 17. We are close. He does, chores, errands, virtually everything with my husband and I. We role model. I would describe our relationship as honest.”
- Joan



“My son was never in ABA--the closest he came to compliance training was in pre-k with a short lived stint with a 'feeding therapy' type deal and in K with a ridiculous behavior mod program that lasted about 2 months. Both were mild compared to formal ABA...but both sucked the life out of him and caused long-term damage.
So--I write that part because it took time to rebuild trust. Changing schools, changing my mindset and going with my gut and simply trusting that I didn't need to push him or let people tell me I needed to make him do things he wasn't ready or able to do.
Benefits: he has learned to trust that I won't try to force him into something and that he is always allowed to say no. I've seen him grow to be confident and self aware while also seeking help and comfort easily when he needs that. He knows that I won't minimize his anxiety or his troubles even if I don't readily understand the "why" behind them. He knows how to self soothe and he knows that whatever he needs to do is ok.
He has learned countless things on his own time and of his own accord because he is given the freedom to do so.
I think that he truly knows that I will always have his back and that I am a safe place for him--and that I would never allow him to be treated with anything less than respect.
He knows he is in charge of his body and his mind. We are connected in a way that absolutely would not be possible had I put him in ABA and used any compliance training with him.”
-Galadriel


“I'm going to be really, really honest... when we received Curlytop's dx, our psychologist told us we needed ABA, and I was destroyed when I learned it wasn't available in our area for kids over 5 years old.
So, I started a wild search for a provider, and in doing so, learned more about ABA and realized it was NOT what we wanted for our daughter.
I was "young," as far as being the parent of an autistic child. That is, I was a newb. I thought if the professionals were recommending it, it must be the right thing, but when I actually learned what it was, it didn't mesh with my parental ideals, or the goals I envisioned for my daughter.
So, we sought out speech and occupational therapies with providers that were willing to work with our standards. And the result was that my daughter has grown on HER OWN TERMS, and is more comfortable with who she is, because we've allowed her to have input into her therapies.
When ABA-esque goals come up in IEP proposals, we soundly reject them, and we say why. "No, she doesn't need to learn extended eye contact. It's painful for her. No, she doesn't need to learn to control her squawking. It releases stress for her."
The result? She's been allowed to decide what level of eye contact is safe and comfortable for her, and she uses it more with people she trusts -- even though it was not a "goal." Her vocal stimming is reserved for times of high anxiety, and not an everyday occurrence -- even though it was never a "goal" on paper to reduce it.
She feels safer, and more comfortable, because there is no pressure to conform to a model that is not meant for her.”
- Christina



“ *We are SO happy. My child is sooooo stress free and relaxed most of the time. Sure, he has support needs.... But we do what we do and life is really super joyful for us. My child trusts us, which is something I do not think we would have if we did ABA. I think that trust is huge. It's the basis for everything. (I never had that, so yeahhhh.) The only time he struggles is when we have fallen short on support (we don't always get it right) or when when life stuff is beyond our control and creates stress. And we are all learning to work through that stuff together. We are doing pretty damned ok most of the time.”
- Michelle



But what is NBAA™? NBAA™ stands for “Not Being an Ableist Asshole” to your kid. It might sound complicated, but it’s actually pretty simple. Not Being an Ableist Asshole will cost you nothing, but the rewards you and your child will receive are priceless.




How can you practice NBAA™? The secret is recognizing your child is a human being with thoughts, feelings, and a will of their own. You must learn to accept and love them for who they are, not for how they compare to the child you expected to have. (This actually also applies whether your child is autistic, otherwise disabled, gay, trans, or any other marginalized identity which is 100% valid and valuable, even if you do not understand it.)



When we refocus our energies, from trying to change children or make them indistinguishable, to helping them learn to love themselves for exactly who they are, teaching self advocacy skills, and helping them find the right supports and accommodations, the results will speak for themselves. At the end of the day, you will not have a non-autistic child, but you will have a child who knows they are loved and valued. You will have a relationship with your child that is based on unconditional love and acceptance. Change your thinking, change your world, but don’t change your child.


* I did not actually invent Not Being an Ableist Asshole™
** A sampling of places and parenting blogs for parents who would like to try NBAA™ which are 100% free and 100% respectful to your child’s beautiful brain:




Parenting Autistic Children With Love & Acceptance


Respectfully Connected


We Are Like Your Child


30 Days of Autism: Leah Kelley


Love Explosions


Autism HWY


Suburban Autistics


Michelle Sutton Writes


Erin Human


Ollibean


Diary of a Mom


Down Syndrome Uprising


Mama Be Good



image: multicolored stars and text with a blue/green megaphone. Text reads: Wow! Amazing! Revolutionary! Incredible! New Autism Treatment Guaranteed Results!


Wednesday, March 22, 2017

What It's REALLY Like When Your Kid Gets An Autism Diagnosis

Another day, another disgusting article from a non-autistic parent of an autistic child telling the world “what it’s really like” when your child receives an autism diagnosis.  I feel like I see these types of articles so often, yet each one is framed as if it were the first time a parent was ever given a platform to complain about autism  in the history of ignoring and speaking over autistic voices ever.  


Well, I’m a parent too and these types of articles that talk about “grief” and “devastation” and usually refer to non-autistic people as “experts” are not only ableist and offensive, they are abusive.  It is abusive to talk about your child to the entire world as if they are a problem to be solved.  It is a betrayal to your child.  It is a betrayal to the promise we make as parents to protect and unconditionally love our children.  


It’s also a lie.  And parents need to stop telling it to themselves, the world and most importantly, their own children.   How you talk about autism is how you are telling the world to treat your autistic kid.  Don’t ever forget that.


Do you want to know what it’s REALLY like to get an autism diagnosis for your child?  I can tell you what it was like for me as a parent to an autistic child since apparently my kid’s diagnosis is all about me.  Because the entire process is horrifying and scary, but not for the reasons you think it is.  


It was an answer to a question I already knew the answer to.  


It was watching him have to go through rounds of dehumanizing and invasive questions being asked about him right in front of him like he wasn’t even there and wondering why the hell they kept offering ME tissues and telling ME it was okay to cry.


It was doctors and therapists trying to convince me that ABA 20 plus hours a week was the only hope for my child to have a “normal” life.  Even when I knew in my heart that was wrong, they tried to convince me repeatedly that I needed to start working day and night to fix this beautiful, not-even-broken child that I am so incredibly lucky to call my kid.  It was being told that I was failing him as a parent because I cared more about his self esteem and happiness than trying to mold him into something he was never meant to be.  


It was navigating confusing and inaccessible services that I was told were necessary because of some bullshit “developmental window”.  It was being told that I was to ignore my non speaking child when he didn’t “use his words”, no matter how distressed he became.  A loving connection with my child was seen as a failure on my part.  I was “too easy” on him.  I made him “spoiled” and allowed him to “manipulate” me.  Even though I knew that when the world was too much, I needed to be his soft place to land.  We are told that when our children are autistic, we must be “tough” and to ignore their needs.  That is something I could never, would never do.


It was being pressured to make every moment “a teachable moment” instead of allowing him to enjoy his childhood or ever have a second of down time.  


It was being bombarded with inaccurate information from hate groups like Autism Speaks instead of being directed to learn about autism from actually autistic people.  It was being taught that autism was the enemy and that I had to be a “warrior”.   It was being told that I needed to fight autism because somewhere, there was another kid inside mine, a version of himself that was not even him and I was supposed to want that instead of the perfect kid right in front of me.


It was people giving me the sad face like my child’s neurology was something to be mourned.  It was seeing how pervasive and ugly ableism is in a completely new way.  It was the whole world telling me that I was a victim of my child’s disability….but refusing to see how their ideas and attitudes victimize disabled people every day.  


All of these things were not caused by autism.  They were not caused by my child being who he is.  They were caused by a world that is fearful and hateful toward disabled lives and would rather fuck up the relationship between a parent and child than admit it’s okay to be autistic.  It’s okay to be disabled.  Being who you are is not a failure.  Loving your child is not a failure.  


Getting an autism diagnosis for your child is not the end of the world, it’s just official confirmation in writing of something you already knew.  It changes nothing about who your child is and how they deserve to be loved.  Don’t ever let anyone make you think that it should.  

image: blue/white starburst background with white text that reads: "How you talk about autism is how you are telling the world to treat your autistic kid." autistictimestwo.blogspot.com


Monday, October 10, 2016

The Signs of Autism...

A while back, a poster showing the “signs of autism” was brought to my attention.  It was clearly written from a non autistic person’s point of view, was extremely pathologizing and negative.   I “fixed” the poster with language that was more supportive and reframed the “behaviors” shown in a more understanding and accepting way.   My friends at Autism & Neurodiversity in the Classroom (an awesome resource, you should check them out!) posted the two images side by side to show that the way we talk about autism really does matter!  


10836507_1007775989234670_2015709680_n.jpg


I wanted to create a resource that people could share to counter these types of messages about autism, and I finally did!  This Neurodivergent Narwhal poster will be available in my redbubble store if you’d like to purchase it to support the library.  If you e-mail the library at edwileyautismacceptance@gmail.com, I can send you a free pdf of the poster to print and use as well!

 
Neurodivergent Narwhal Explains-.jpg


( I apologize for the lack of image descriptions, I am working on that, but it’s something that is really difficult for me to do!  Thanks for understanding!)

Sunday, August 14, 2016

My Kid is NOT a Brat, But Maybe You're Kind of An Asshole

Recently, a parenting article has been going around the interwebs and popping up on my Facebook feed.   The article talks about all the ways that some parents coddle and make their children into “brats”  by horrible, abusive things such as “wanting them to be happy” and “asking them what they want for dinner.”  


So, first I want to address the inherent ableism in this article.  Because it is incredibly ableist to assume that all children have the same physical, developmental and cognitive abilities and executive functioning skills that this list seems to assume that they do.  Secondly, parenting is not us versus them.  People who have that mentality are going to think that kids are “brats” because they don’t see children as actual people with thoughts, feelings, needs and desires, preferences and wants of their own.  And guess what?  Children have all those things just like adults do.  On top of that, they do not have the skills and knowledge to always communicate those thoughts the way that adults do. If they did, THEY WOULD NOT NEED PARENTS.  


The first item on the “Brat List” is “we negotiate.”


Yeah, we do negotiate.  It’s called collaborative problem solving and it’s actually empowering to allow kids to find mutually beneficial solutions, learn to compromise, and build loving, supportive and respectful relationships with their parents.   Some children, especially children who are naturally anxious need to know that we can be flexible and so can they.  And teaching flexibility is best done by modeling those same things in your own actions, words and deeds.   I wouldn’t bark orders at my friend or my spouse, so I am not going to do it to my kid.  My child is a human being and he deserves respect too.  


The second item on the list is “we clean his room”.


I do not clean my son’s room, but he does have a hard time with executive functioning, organizing and motor planning.  We’re both autistic, so that sometimes comes with the territory.  What I do is to help him when a task seems so overwhelming.  We break it down, we make some lists and we figure out a way to do it that isn’t a battle because in the grand scheme of things, toys on the floor and a messy pajama drawer are not a big fucking deal.  


“we carry the backpack”


Why the fuck do you care who carries my kids backpack?  Do you know my child’s medical needs?  Not all disabilities are visible and my child has a physical disability that makes it hard for him to do some of the things that other kids can do easily.  When his backpack gets too heavy for him, I will help him if I can.  Even if he did not have a disability that impacts his ability to sometimes do these things, I would still help him if he asked for help.   If I was walking with my spouse and he said “this is getting too heavy for me…”  My response would not be to tell him to fuck off and stop acting entitled.  Children don’t deserve to be treated like shit just because they are littler than you and have no power.  


Perhaps one of the shittiest and most annoying things on this list is “we ask them what they want for dinner”.  


Okay, put aside the fact that some people (and again, “people” includes “children” because children are people! Radical concept!) have very disabling sensory issues with food.   Let’s just forget about that incredibly ableist assumption that any kid should be able to eat the food you give them.  It’s just a plain fucked up thing to do to ANY kid.  Would you like it if you had no say in what you eat?  Would you think it’s okay to be forced to eat something just because your mom or dad picked it out?  You don’t even have to cook two dinners (though that is something that I often do happily because I like to cook).  It’s not that hard to just let a kid make a sandwich instead of being forced to eat food they do not like just because you’re a power tripping bully.


Another incredibly ableist point on this list is “we make excuses for bad behavior or bad grades.”  


Behavior is communication. ALWAYS.  All the time, every day.  


And you know what?  I don’t always “behave” well.  I get annoyed, pissed off, upset, have a crappy attitude all the time when I am having a bad day.  Or I am tired.  Or I am overwhelmed.  Why don’t kids get to have that too?  What about children makes us think that they must always be pleasant, well behaved, compliant and obedient without question?  Why aren’t kids allowed to experience the full spectrum of human emotion?  They are not robots.  I don’t know about anyone else, but I am proudly raising a noncompliant child who questions authority and knows his worth.   “Behaving” according to ableist standards is not a priority for either of us


And grades?  There are plenty of reasons for not having good grades.  Learning disabilities, hostile sensory environments, children being herded like cattle and only taught to repeat facts instead of actively learning, exploring and engaging.  There are a number of reasons for not having good grades, including the fact that as humans, our learning and communication styles are wide and diverse…..and these are not excuses, they are a way to understand how to support and accommodate each other.  


“we argue with the teacher and the coach”


Adults are not always right.  They just aren’t.  


And for parents of neurodivergent and otherwise disabled kids, not  having to argue  with the adults who are supposed to work with our children is a rare thing indeed.  


As a disabled, autistic child, here is what adult teachers and coaches did to me:


  • Allowed other children to bully me relentlessly because “it builds character”  K-12
  • Left me under the stairs in the basement for an entire day while I screamed and cried because my stimming was “disruptive”  2nd Grade
  • Assigned “friends” to “manage” me instead of thinking that I had any worth or value as a friend on my own.  5th Grade
  • Made me vomit on the gym floor in front of my class because I couldn’t “use my words” even though they knew I needed to go to the nurse. 7th Grade
  • Called me “lazy”, “stupid”, “r*******”, and openly mocked the way that I talked in front of other kids.  K-12


Those are some of the things that my mother had to “argue” about with my teachers.  Every single one of those teachers said I was just a “brat”.  Every. Single. One.   And one of the biggest reasons that we became an unschooling family is because I found out that not much has changed for developmentally disabled kids today.  They are still called “lazy” and “brats” and accused of using their disability as “an excuse”.   


Calling kids  “brats”, forcing them to eat things they hate, not making accommodations for the fact that we are not all on the same developmental path, these things do not “build character”.   They cause anxiety and create a lack of trust because the child’s needs are not respected.  My child is not a “brat” because I want to build a relationship with him based on mutual respect and connection.  My child is not a “brat” because I want to empower him to make choices, to find solutions, to be creative and to think critically.   Non compliance is not bad behavior. It’s human behavior.  It’s what builds strong people who know their value and in turn can see the value in others.  


Calling a child names because they don’t do what you want them to do is not good parenting or good humaning. It’s what bullies do and I refuse to be my child’s bully.  


No, my kid is not a brat.  He’s a human being who has good days and bad days and is doing the best he can to navigate this world, in spite of people who think that his youth and disabilities are just “excuses” when he does not buy into your particular line of bullshit.

My kid is not a brat, but if you think it’s okay to call children names for daring to have emotions, needs, and wanting respect, maybe it just means you’re kind of an asshole.


image: green/blue textured background with black text that reads: "My kid is not a brat, but if you think it's okay to call children names for daring to have emotions, needs and wanting respect, maybe it just means you're kind of an asshole."


Thursday, May 5, 2016

Behavior Plan for Autism Professionals

My Behavior Plan for Parents was pretty popular and I have had requests from a lot of parents to do a similar plan for teachers, professionals and therapists who work with Autistic children. You can find a printable copy of this plan here.

This is a Behavior Plan for Professionals, Teachers & Therapists that are working with my disabled/autistic child.  Signing this behavior plan means that you will always put the dignity, autonomy, and respect for the disabled child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.     

  • I will look at each child as an individual as we celebrate their strengths and support them in the areas that challenge them.  
  • I will support them by teaching self advocacy skills and in helping them find accommodations that work for them and that respect their autonomy.
  • I will throw out the myth of a “developmental window” and acknowledge that every child will grow and learn in their own time, in their own way with my patience, guidance and nurturing.
  • All of my interactions with the children I work with will be based on mutual respect, not on enforcing my authority.
  • I will look at every therapeutic approach with a critical eye.  I will ask myself what is the desired outcome?   Am I advocating respectful supports or am I prioritizing compliance and indistinguishability?  It is not my job to “fix” because children are not broken.  
  • I will research the long term effects on the autistic person’s self esteem, trauma responses and mental health when  they are subjected to therapeutic approaches such as ABA that value compliance and indistinguishability.  I will gather this information by listening to actually autistic people.
  • I will embrace the neurodiversity paradigm and celebrate each child as a valuable part of the wide and diverse spectrum of humanity.
  • I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
  • I will learn about Autistic culture and find Autistic friends, not just for the children I work with but for me as well.  I will  promote acceptance and lead by my example.
  • I will recognize that autism is an integral part of who the children I work with are and it shapes how they view, process and experience this world. I will value every part of the children I work with.  I will never teach them shame  or internalized ableism.  
  • I will always presume competence in every child that I work with.
  • I understand that communication is more than speech and I will value all communication in its many forms.  I will not prioritize speaking as the only valid type of communication.
  • I will not attempt to interpret, prevent or stop certain behaviors such as stimming based on my non-autistic experiences, but will instead attempt to understand the function and purpose it serves for the autistic person.   Sometimes, I may not understand, and that is never a good reason to attempt to stop or prevent it.
  • I will recognize that autistic children can learn skills just like their typically developing peers and friends.  They do not need a separate, segregated classroom to be taught in ways that dehumanize and stigmatize them.  If the autistic child needs more time to learn something than typically developing children, that does not mean that they will never learn these skills.  It just means they learn differently and I will accommodate and support that.
  • I will not remove supports once the autistic child is successful with them.  I will recognize that this is cruel and makes very little sense as autism is a lifelong disability for which the person will always need supports and accommodations….even as the support needs change and they master new skills.  I cannot remove all supports and expect a disabled person to thrive without them.
  • I will likely make mistakes along the way because I am not perfect, but when I know better, I will be able to do better. I will remember that working with autistic or other neurodivergent children means supporting them, accepting them, valuing them for the unique and wonderful people they are.

Image: white text reads: 
https://goo.gl/Dr3m7a
Behavior Plan for Teachers, Therapists & Professionasl who work with Autistic Children.   Text is on red and white checkered background.

Sunday, April 3, 2016

Facebook Doesn't Care About Marginalized Voices

  
So, for the second time, I am in Facebook jail.  The first time I was blocked by Facebook for 24 hours was when someone left a string of racist comments on AWN's facebook page on a post about the intersections of autism, disability and race and the #BlackLivesMatter movement.   Acting as the page, I asked the person to stop and when they repeatedly ignored me, I banned them from commenting on our page.   Naturally, they reported me to Facebook and Facebook decided that it was more embarrassing for that person to have me tell them to stop being a racist than it was for the racist to actually say and do racist things.  


Unfortunately, it is a common occurrence that I see in groups and spaces that are dedicated to radical activism or social justice.  Those who troll the page are able to claim that being held to standards of human decency is "oppressive" and being called out on their problematic and shitty behavior is somehow a worse offense than it is to actually be a raging asshole.  


And I do understand that I cannot prevent people from being human shit stains.  However, in the intentional communities that I help to run, I do not have to allow these comments.  Creating safe, inclusive spaces for marginalized people is somehow seen as some sort of SJW oppression even though that is not how oppression works.   Generally, in the communities that I run that are dedicated to disability justice and autistic rights, this is how it goes:


Person leaves ableist/racist/transphobic/bigoted comment


Page (me) asks them to stop and refers them to community guidelines.


Person complains about how I am violating their First Amendment Right to be a flaming shitlord.  


Page (me) explains that I gave them a chance, that free speech does not free you from the consequences of your speech and goodbye.


Person reports me to Facebook for their damaged hurtfeels.


Facebook bans me.


This time, when I was blocked from Facebook for three days, it was due to an incident on the Boycott Autism Speaks Facebook page, which I moderate. I had reposted our community guidelines and the intentions of our community from our website, as we do from time to time to remind people what the Boycott Movement is about.


An Autistic person came to the page to say they wanted a cure. Okay, that is their business but that is
1. Off topic, and
2. Our page embraces the neurodiversity paradigm and we are clear about that.  


Another BAS moderator simply reminded them that this was an intentional community and not to go there.


Instead of listening, the commenter just kept going and this resulted in other people joining in the conversation.  We asked them to stop.  MOST of the commenters respected this.   The original commenter did not, and was removed.  Then a parent decided to put her two cents in.  Because as you all know, disability and autism are not a part of us, but just a terrible thing we do to our families by existing.  (Sorry, I am using sarcasm).


The parent went into great detail about her child, including talking about his toileting issues, his meltdowns, his self injurious behaviors, and generally saying terrible things that completely violated his privacy and dignity.  I will not copy her comments here because SOMEBODY has to give a damn about her kid.


As the page, I commented with this:  


MODERATOR NOTE: UNDER NO CIRCUMSTANCES ARE WE ALLOWING COMMENTS THAT VIOLATE THE PRIVACY AND DIGNITY OF AUTISTIC CHILDREN! This is an intentional community and is not a space to vent about your hard time parenting. If you want parenting advice, please go to our friends at Parenting Autistic Children with Love & Acceptance or Respectfully Connected !!!!!


To which the parent responded:

My sons "toileting issues" are a direct symptom of his autism. If, especially today April 2nd, I am not to speak of these, on a site directed at autism discussion, because it makes you uncomfortable? Then please, do not pretend to be about either awareness or acceptance. You can choose to ignore that part of autism but you don't get to dictate what I discuss. I work fiercely everyday so that autism alone does not define my son, but the hours and energy I exert to do so, means it defines ME. I have earned my right to speak on the subject, the ENTIRE subject, without censorship or judgement from you.


Okay, first of all, toileting issues are not a symptom of autism.  Secondly, BAS is not about "autism awareness".  In fact, we explicitly say that we find "awareness" to be harmful and disrespectful to actually autistic people.   Thirdly, in an intentional community that I maintain, I certainly do get to dictate what is discussed.    We value the civil rights, dignity and humanity of autistic people, including autistic children. Violating their privacy is in direct opposition to those goals.  Fourth, autism does not define you as a parent.  You are co-opting your child's diagnosis at the same time that you are saying it can't define him and that is gross and shitty.  You absolutely have the right to speak about your experience parenting as long as it does not violate the privacy, humanity and dignity of your child.  If speaking your truth involves throwing your own child under the bus for sympathy, that is never okay.  Lastly, I have the right to judge.  Judging is what makes me human and allows me to know the difference between right and wrong.  I also have the right to censor your ableist comments in a space that was created to be a safe haven for autistic people.  


After this comment, I informed the person that they had been removed for repeatedly violating our guidelines and the dignity of their child.  My mistake was in not double checking to make sure that her name was not “tagged” with a link to her profile.  As soon as I realized that it had, I removed the tag, but left my comment.   And that right there was what got me banned from Facebook.   


This is what I said to Facebook when they informed me of the ban:

The comment that you blocked me for was after repeated attempts to stop that person from posting things that were humiliating and abusive about her disabled child. Is it okay for a parent to post about their child's toileting habits as long as the kid is disabled?  I understand the person was embarrassed about what I wrote, I know because she continues to harass me via e-mail.  Well, how did her child feel?  And I did not intend to tag her in the comment but you guys are the ones who made it so that tags start auto completing when you type a name.  As soon as she asked that the tag be removed, and I realized that I had done that I removed it and I am still banned.  Meanwhile, it's okay for her to post about her child's private moments and bathroom habits in a public forum because embarrassing disabled kids is okay?  But asking someone to STOP doing that in a community that I moderate that is set up on the principles of disability rights is NOT okay?  
The last time I was blocked from Facebook was when I asked someone to stop saying racist things in another community that I moderate.  That person reported me but her racist comments stood.  
It seems to me that Facebook is saying that being a racist or an ableist is okay, but someone asking you to stop is not.  I understand that people are free to be racists and ableist bigots.  And I can't stop anyone from publicly humiliating their children on their own timelines....but these comments were in intentional communities that we try to run as safe spaces for marginalized people.  Should I allow every bigot to come in there and say what they want?  That is not making these spaces safe for those of us who are not white, straight, cis, neurotypical or nondisabled.    



So, I want to remind you all that it is perfectly fine to humiliate your disabled children on Facebook, but it is not okay for someone to tell you that it’s wrong.    And based on my previous Facebook ban, it is completely acceptable to do and say racist things but if you ask someone to not, you will be banned.   

The person who reported me to Facebook because she was embarrassed that I said her name in a comment continued to e-mail me until I blocked her.   I may have mentioned that she has no right to claim embarrassment when she is posting hugely embarrassing things about her own son in public forums.   I wonder if anyone has thought to ask him how he feels about having private, humiliating details about his struggles and medical history put on Facebook for the entire world to see.


Holy Hypocrite, Batman!  


But these things are fine to post on Facebook.  Because children don’t deserve rights, disabled people don’t deserve dignity and marginalized people should not expect to be able to stand up for their own humanity.