Category Archives: On my soapbox

Autism: a tragedy

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When Evie was first diagnosed with Autism, I went in search of an online community for parents of Autistic kids.  What I found was a whole bunch of parents moaning about how Autism had ripped apart their, otherwise perfect, families.  At first, I felt really sorry for them…and really lucky that I had an incredibly easy kid. I stayed quiet and listened but the more I read, the more I was convinced that the misery they were complaining about, was mostly of their own making.

I saw an unspoken competition play out where parents earned martyr points based on how their Autistic kids were screwing their lives up.  I finally would chip in to the conversations with carefully worded suggestions about changing their thinking from a place of negative to a place of positive.

I was quickly lambasted and told that I was a bad mother.  Because I didn’t fight, fight, fight Autism.  Because our whole world didn’t revolve around therapies. Because I hadn’t tried xyz diet.  Because I dared to think that Autism is not a death sentence or a tragedy.

I chose to isolate myself from those communities.

For the past fourish years, we’ve been doing our own thing.  My only goal is to raise healthy and happy children.  We build our life around that.

Evie is six years old.  And when you’re six years old, and already going to school 5 days a week, your time after school and on weekends should be spent doing things that you love.  So Evie does an adaptive swim program two days a week because she is actually part fish and is happy in the water.  And all of the medical stuff that comes with Evie is scheduled during school hours as I do not encroach on her free time.  Ever.

Evie is sensory seeking.  I believe that is how she takes in information about the world around her and that she uses her senses to help cope when things are overwhelming.  I don’t try to dissuade her from that which is instinctive to her.  So that means if Evie wants to squish jello between her fingers and toes, that’s what she does.  And I don’t worry about the mess.   And if she wants to spend 10 minutes exploring a heating grate in the doctor’s office or the rubbery handle of the grill in her back yard, that’s what she does.  And I don’t worry about being ten minutes late or the pile of dishes in the sink (although it would help if my husband would put the dishes in the dishwasher instead of the sink) .

When Evie flops to the ground, I don’t worry about getting her to her feet or making her stop flopping.  I worry about answering the need that she or her body is trying to communicate. Her flopping is not an inconvenience to be dealt with.  A behavior to fix.  I am not a lazy mama who doesn’t set boundaries.  I am the proud mama of a small human being who is worthy of my respect and honor.  She deserves to be accommodated to have her needs met.

You will never hear the words, “I love Evie but…” come out of my mouth.  There are no buts when you truly and unconditionally love your child.  I don’t do a lot of things well, but I am very proud of the fact that I love every inch of both of my children.  And I do that well.

I am not without parental stress.  No parent is. I worry about Evie’s co-occurring conditions like her Epilepsy.  I worry that she doesn’t have a sense of danger.  I worry that she is over-scheduled.  I worry about her when she leaves the protective cocoon that we have built for her and goes out into the world where she is not given unconditional respect as a person.  I worry that she does not have a more sophisticated method of communicating as of yet.  Evie does not stress me out.  Dealing with other people about Evie does–and there are too many people to deal with and there is too much red tape to hack away.

But I would certainly lose at the parental martyr game.  We are not living a tragedy.  And would you believe it if I told you that I have an easier time parenting Evie than I do Maxine?  Because that is true…and Maxine is not a hard kid to parent either.  My marriage is not being ripped apart by Autism.  I cannot actually remember ever having a single argument with Scott about Autism or Evie.  Because we are united in our mutual love and respect for her and our unfaltering desire to raise happy and healthy children.  Our time is not consumed by endless therapies as we have no desire to see Evie perform like a trained chimpanzee.  Life is pretty good because we usually go with the flow.

100,000,000 parents  would tell me that I am doing it all wrong.  And I might listen if they seemed happy.  If they seemed like they enjoyed their children. But the people that are telling me how wrong I am about every possible thing, are the same ones that are so caught up in the tragedy of Autism and the misery of their existences as parents of Autistic kids.  No, I don’t have all the answers.  And I’ve gotten more wrong than I’ve gotten right.  But my kids are both happy.  I’m happy.  And at the end of the day, I know that I am getting the important things right.

So thanks, but no thanks, you can keep your  copy of “How to Ensure that Autism Destroys Your Family.”  We will write our own book.

Wait, Evie is not Autistic?

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I have had person first language drilled into my head since Evie started Early Intervention at the age of 6 months or so.  For those of you that don’t know, person first language means that you would say, “Evie has autism” and not, “Evie is Autistic.”  The thought is that you need to separate the Autism from the person.

I didn’t even realize there was a debate about  it within the Autism community.  And honestly, I would cringe when I read or heard someone refer to a person as Autistic because I have been so heavily indoctrinated.  But I’m learning.

You wouldn’t say that a person who has cancer is cancer.  So you shouldn’t say a person who has Autism is Autistic.

But, Autism is not a disease.  And there is a lot of fear mongering involved in linguistically comparing it to a disease–something to be diminished, cured, reduced, fixed.  There is also, not so subtle, shaming in telling someone that Autism doesn’t–shouldn’t define him/her as a person.  That the Autistic person should separate from the very nature of his/her being.

Who is deciding that Autistic people can not identify as Autistic?  Many Autistic adults vehemently insist on being referred to as Autistic.  The Author of  Yes, That Too has devoted several blog posts to her insistence on being called Autistic.  I don’t suggest referring to her as a person with Autism after she has asked to be referred to as Autistic as she is a force to be reckoned with.  She writes thoughtfully and intelligently on a wide variety of topics, has a bachelor’s degree in math and is working on a master’s in math.  And oh yeah, still working on her bachelor’s in Chinese.  And Engineering.  Yet some would have the gall to say she is not what?  Smart enough…capable enough to identify herself as an Autistic person???

I say I am happy.  I say I am human.  I say that I am female.  These are all words that I use to identify myself as a person and to identify with other people. None of these words singularly define me.   Would you ask me to say that I am “a person with femaleness“? Nobody criticizes the use of these words because these words have positive associations associations in our culture.

Autism does not have positive associations with the population at large.  When I was questioning the use of a social therapy that I was not familiar with at our IEP meeting last week, I was told that it was used to work on “the deficits of Autism.”

We look at Autistic people as people with deficits.  That is truly offensive language and discriminatory thinking.  As long as we think of Autistic people as deficient or lacking in…humanity, we make it painstaking for an Autistic person to identify with and embrace a large part of his/her nature.  Stripping Evie of her ability to proudly identify as Autistic would be akin to stripping me of my ability to identify as a woman.

Does being female conjure up images of deficiencies as a person?

The only difficulties that I have as a woman are the ones that our society has dumped on me.  And I say the same is true of Evie as an Autistic person.

Evie is in no way shape or form deficient.  If you think that the facts that she does not have speech or make eye contact often mean she is deficient as a human, then YOU are deficient in acceptance, tolerance, and humanity.

I’ve mentioned that before Evie was born, Autism was pretty much my worst fear for her.  I was taught to fear it in everything I read about this terrible affliction, this Autism, that snatches our kids away and silences them at an alarming and ever increasing rate.

Autism has not snatched my Evie.  It has given me my Evie.  The Evie that I love the heck out of every single ding dong day is wholly and fully and completely and lovably Autistic.  Always Autistic in every single thing that she does as I am always female.  And I have never wished any part of who she is away.  And she is Autistic.  Did I mention that Evie is Autistic?

You can’t take Evie’s Autism away with your language.  And I am as thankful for that as I am outraged that any person would, knowingly, use language to shame, oppress, dismiss and marginalize Evie and her Autistic people.

***Editing to add that while I don’t want to use language in a way that I believe separates Evie from Autism…especially in a way that has a shaming effect, I respect every person’s right to choose how he/she self-identifies.  I should have made this more clear in my original post***

retard time…again

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Last summer when I was was taking Evie to her summer school program, I had walk through a classroom to enter the school because the main door was locked.

In the room, there were 3-4 kids working.  When we entered, they all said, “retard” in some way shape or form about Evie.  The adult in the room said, “that is not okay to use that word.”  I don’t know what else because I was busy hurrying through and biting back tears.

As always, in hindsight, I wish I stopped and talked to them about how language can hurt.  But I didn’t because I was close to tears.  Maybe I shouldn’t have hid those tears from them.

I am reminded of this because I just signed a permission form for Evie to be filmed,  again, this year as a group of students and educators work together on a campaign to end the use of THAT word.  This makes me so happy.

The thing that makes me very sad and very fucking angry is that some kid learned to use that word from an adult.  Maybe some of the kids that said it learned it from another child.  But some kids learned it at home.

The “stop being so sensitive”, “it is just a word”, or my personal favorite, “it doesn’t have anything to do with people who are retarded and I would never say that to a person with a disability” just don’t fly with me.

It has everything to do with a community of people who are repeatedly subjected to their medical diagnoses being taken and used in a way that is derogatory and offensive.

Oh you need to roll your eyes when I say offensive?  Tired of hearing it?  Tired of political correctness?

If you are an adult, I have no words for you and your insensitivity.  Well I do, actually, but “fuck you” seems a little hypocritical at this moment.

I would one hundred thousand million gazillion times over rather my kids drop fuck bombs left right and center than use words like: retard, retarded, stupid, dumb, moron,idiot etc.

Why are we so aghast words like, “fuck” and “shit” that don’t refer to people in a derogatory way when we are fine with using words that are derived from making slurs about a vulnerable population of people?

Currently, and for the last few years, I have been trying to stop saying “crazy” and “insane.”  I get it, it is hard to stop saying something we have always said without thinking about the consequences and meaning of our words.  I slip up all of the time and one of these two words floats out.  If I catch myself saying it, I correct myself–especially in the company of Maxine.  But I know that I can strike these words from my vocabulary.

And you can strike the words that humiliate and degrade other people from your vocabulary too.  And you should.  And if you don’t at least try, you’re an asshole.

Asshole or retard?  Which one is more offensive to you?  Which one refers to a population of people in a derogatory way?  Which one just refers to a part of the body?  Squeamish folks with puritanical hangups be damned if you’re still using. “retard, stupid, dumb, idiot, moron” in your everyday language without any sort of guilt or attempt to change that.

I maintain, if you don’t, you’re a fucking asshole if you don’t at least try.

 

 

 

 

 

I am mama. Hear me roar. You are perfect.

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I’m struggling with Evie’s autism lately.

And yes, I’m angry.

Angry with the people that have a singular focus.

Angry with the people that refuse to consider that there may be more than one way to help her.

Angry with the people that are so certain of their own opinion, that they refuse to hear a different perspective.

Angry with the people that view her differences as a detriment rather than beautiful.

Angry with the people that want to force Evie to live in a neuro-typical world–rather than building bridges that will allow us all to cross back and forth between these two worlds.

This is my dear child.  I am her fierce and protective mama.

You may have 200 letters after your name.  Your walls may be lined with diplomas and certificates proclaiming your autism expertise awesomeness.

But I’ve got something better.  I’ve got a mother’s intuition.  I’ve got my child’s best interests at heart 100% of the time–regardless of the budget, regardless of the current educational trends.  I have earned my child’s love.  I know my child better than any other soul on this planet.

I know how to make my child smile.

I know how to alleviate her frustrations at being stuck in a world that mostly doesn’t understand her.

I know what she needs.  And I am tired.  Tired of trying to play nice at the expense of her best interests.

So I quit.  I quit the politics.  I quit smiling and trying to accommodate egos.  I quit all of the bullshit that doesn’t serve Evie 100%.

I am on team Evie.  And only team Evie.

I am sorry Evie.  Sorry that I allowed myself to put the egos of others ahead of your needs.  I failed you.  I will not fail you in that way again.  Ever.

You are my perfect child.  You don’t need to be fixed.  You don’t need to be cured.  You need to be happy.  Like everyone, you need to work for your happiness.  But you need to work for YOUR notion of happiness.  Not the idea of happiness that someone else imposes on you.

We are working in the right direction.  We have some fabulous people that are going to bat for you-and your happiness.  We have some fresh perspectives.  We are seeing some really great things for you.

We are seeing you smile more.  Kiss more.  and cuddle more.

Everything else can take a back seat to that.

 

Retard

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I’ve never thought it was okay to say the word “retarded” in a derogatory way.  It bothered my long before I was ever holding Evelyn in my arms.  But now it carries an extra little kick to my heart.  It shocks me to hear/see so many of my friends casually throwing this word around.

I’m making this personal.  Evelyn has an intellectual disability.  When you use the word “retard” or “retarded” in a derogatory way, you further exclude her.  You tell her, you tell me, that she is not accepted.  The word has become a description for negativity.  A description for something flawed.   It is a hateful word.  You spread hate.  You hurt my Evelyn.  You hurt me.  You hurt your children.  You hurt our beautiful world and all of the beautiful people in it.

I hear people say things like, “you’re being overly sensitive” or “people are too PC” when they are called on the carpet for using this slur.  What does that even mean?  Too sensitive?  Too PC?  How can we associate attempts not to offend other human beings with negativity?  If you would rather hurt my child than stop using “retard” that is certainly your right.  But your attempt to pass it off as some sort of stand is a miserable failure.

Why should our desire to use a word be stronger than our humanity?  Is our vocabulary really so limited that we just can’t drop a word from it?  A word that hurts and some of the most vulnerable members of our world?  A word that deeply hurts me.  My family.  My beautiful daughter.

I know

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Evelyn is four.  You no longer tell me that she is a late bloomer or that she will catch up.  You know that I don’t believe that you believe that.  Evelyn has special needs.  You know that.  Her special needs make you uncomfortable even though you do your best to pretend that they don’t.  It pains you to know that I know that you are feeling uncomfortable.  Your words are bright and tend to avoid the topic of Evelyn.  But your eyes tell me that you feel sorry for Evelyn.  You feel sorry for me.  What you don’t say, says so much.

I am not criticizing you.  I know the awkwardness that you feel is born out of compassion.  It is born out of your desire to be polite.  You’re silent because you don’t want to say the wrong thing and you don’t know what the wrong thing is.  You have questions that die on your lips because you don’t want to hurt my feelings.

You picture my life, Evelyn’s life, the life of our entire family one way.  But really it is another way entirely.

You see Evelyn as her disability–she IS autistic, she IS non verbal, she IS developmentally delayed, etc.  I see Evelyn as my child that HAS autism, developmental disabilites, etc.  What is so hard for you and so easy for me to see is Evelyn.

You don’t see that Evelyn has a great sense of humor, that she cuddles in and gives the best hugs.  You don’t know that Evelyn has a personality that is so much bigger than her disability because it is so hard to see around a person’s disability unless you’re really looking.  You’re focusing on all the ways that Evelyn is different than your child–different than you.  You see all the things that she is not doing.  And sometimes I see those things too.  And sometimes, yes, there is a voice in my head that wonders what could have been.  But I tell that voice to zip it because oh my goodness…look who Evelyn IS!  Look at the wonderful things Evelyn is doing!  And this might be hard for you to believe.  But it is true.  I don’t want that hypothetical Evelyn.  I want THIS Evelyn.  The one I love everyday.  I want this Evelyn–exactly the way she is.  Disabilities and all.  I want this Evelyn–the one that loves to sit in my lap and cracks up laughing for no reason.  If you weren’t afraid to get to know Evelyn, you would see how very wonderful the real Evelyn is to know.

And while you are getting to know Evelyn, it would dawn on you that our life isn’t anything like what you thought it is.   Sure, we spend more time in doctors’ offices, at therapy, etc. than the average family.  And yes, we have challenges unique to our family.  But at the end of the day, we are just another family doing the best we can to love each other the best we can.  Our life does not center around Evelyn’s disability.  We don’t mourn Evelyn’s disability.  We don’t ignore it or pretend that Evelyn is just like everyone else.  Evelyn and her disabilities are a wonderful part of our family–and I stress “part” because there is much more to us than Evelyn and her disabilities.

The only thing you can do to hurt our feelings is assume that we wish Evelyn was different–to assume that Evelyn isn’t everything we ever wanted in a daughter.  Sure she isn’t what we expected but sooner or later all parents realize that children almost never are. and we love our children for the very unexpected people they turn out to be.  So ask us anything.    And please don’t feel mortified when your children ask those blunt and honest questions that only children ask, like,”why doesn’t she talk?”  Kids have to understand Evelyn in order to try to include her–just like adults need to understand our family in order to include us.   Although we understand it, there is nothing worse than being pitied and/or avoided.

We know that we aren’t going to be around forever and we are desperately trying to carve out a space for Evelyn in a world that aknowledges and appreciates her as an individual that happens to have disabilities not just a disabled person.