breaking the fall

In my last post, I shared why I desperately want Evie to be able to communicate.

My beautiful friend, Deanne, of the blog, Small But Kinda Mighty shared this video in her comment.  It is only one minute long…I hope you click.

For those of you that won’t/can’t click, the video is a disabled man using technology to communicate that he has not been fed and that he waited and waited.  No one came.  He was afraid.  A woman’s voice asks if he needs help handling the situation.

Nope, he does not.  He is handling it himself.

The ability to communicate empowers.

The ability to communicate keeps us safe.

Every morning, I play one of those trust games that you see at team building retreats.  I first push my child off and I don’t know if she lands in safety or not.  Then I fall backwards, myself.

The truth is that I have no idea whether of not Evie’s team will be waiting to break her fall. And because she is my child and her well being is everything to me–waiting to break my fall.

I trust that no one will hurt her.

I trust that the will feed her and give her water.

I trust that those taking care of her will keep her safe.

When Evie can communicate, I will know that there is a safety net waiting to catch her–even if her team is not there.

If I seem impatient to get Evie communicating in a more sophisticated way, it is because I am.

If I seem obsessed with her safety and care, it is because she cannot afford for me not to be.

If you are tired of hearing about Autism and disabilities and the injustice of it all, imagine pushing your kid off a cliff every weekday morning, every time she is not within your direct line of site.  Imagine hoping for the best but never really knowing whether people catch her or not.

Communication will not break the fall.  But it would make people working with Evie think twice about not catching her.

the words i want to hear

It is my greatest hope that Evie will find a way, with our help, to communicate. I often hear things like, “It is so sad that Autistic children can’t tell their parents that they love them.”

Actually, more often I hear parents say, “I want my child to be able to tell me that he loves me.”

When I think about Evie’s communication, that’s just about the furthest thing from my mind.

I want to hear that her tummy hurts.

I want to hear that she wants a glass of water.

I want to hear that she is hungry.

I want to hear the things that make her happy, scared, sad, angry, frustrated, tired.

I mean “hear” figuratively, not literally. I do not care if she speaks or points to a picture or clicks an icon on her ipad or types.

I want communication for Evie.

I want to stop guessing at what she needs and thinks so that I can answer her needs.

Communication will make Evie safer.

I want Evie to be safe.

I don’t want Evie to communicate to stroke my ego or to make me feel better.

I need Evie to feel better. To feel safe.

parent wars part II: anger

In the discussion with another parent that I referred to in my last post, the topic of tone and anger came up.  Both my own anger and the tone and anger of adult Autistic advocates.  I was going to write about some other aspects of that conversation first, but I’ve been seeing a few conversations online which leave me shaking my head in horror over the use of a person’s tone/anger to dismiss the arguments that they are making–conversation between Autistic advocates and parents of Autistic kids.

So can we talk about tone and anger a little bit?

  • Anger has a well rooted and justifiable place in any civil rights movement.  Without anger over inequality and injustice, where would any civil rights movement be?  Answer, the movement would never have existed.  I’ve spent some time racking my brain about any movement in which anger was not the spark and fuel.  I’ve come up with zippo.
  • Some people seem to want to equate emotion and anger with lack of substance of argument.  As if being angry or emotional erase the validity of a person’s argument.  Certainly not so.  I really liked Chavisory’s blog post on this very topic.
  • Anger is not the equivalent of dwelling in negativity or inaction.
  • Criticizing how Autistic people communicate is extremely offensive–especially for parents and people that claim to be working on behalf of Autistic people.  It well known that almost all Autistic people have , at least some, difficulty communicating and behaving socially in the same way that neurotypical people do.

During the conversation I had with another parent, I was criticized as having hard feelings and being angry about the messages Autism Speaks pumps out.  My anger is based on facts.  My argument is logical–and was presented logically through the provision of facts.  The fact that I am angry does not negate the rational argument that I have.  The inability/unwillingness to process rational and well presented arguments, regardless of the presenter’s emotion indicates a lack of audience logic and objectivity.  

During this same conversation, this parent attempted to use Autistic people’s anger over violations to their civil rights, injustice, and inequality as the basis for her argument that Autistic adults lack understanding of Autism as a spectrum and as hostility towards parents for successful advocacy efforts.  When the logic in her arguments were pointed out, which I will be discussing in a future post, she did not dispute the points of the argument–in fact, she ignored the arguments and made some trite comments about not dwelling in negativity.  Her attempt to draw attention away from logic by implying that people cannot be both angry and productive is a pathetic derailment tactic.  Unfortunately, it is also quite effective in its ability to get audiences to prioritize tone over content and to maintain/garner support from those that do not have the ability

A person can be both angry and effective.  Angry and logical.  Angry and right.  In fact, I would argue that anger is a key component in successful activism. To imply otherwise is to ignore the work of civil rights leaders like Ghandi and MLK.

The last thing that I would like to discuss is ableism as it pertains to communication and social behavior.  Let’s forget the fact that being angry does not negate being right.  Instead let’s focus on the fact that most Autistic people have some difficulty in communicating and behaving socially in ways that neurotypical people do.  Insisting that Autistic people communicate by adhering to neurotypical standards, to me, is akin to insisting that physically disabled people mobilize in the ways that able bodied people do.

Decent people would never criticize a physically disabled person for walking with a limp or using a wheelchair.  Why is okay to constantly criticize an Autistic person’s communication style or social behavior?  The fact that this happens, regularly, is yet another way that Autistic people are disabled by social constructs.  If you are a person that truly believes that Autistic people should enjoy equality and access to civil rights, you will not deny them such on the grounds that you do not like the manner in which they communicate or behave socially.  If you a person that agrees that Autistic people should be heard, you will forget about the way that things are being said and concentrate, instead, on the substance of what is being said.

to be continued…




parent wars part I: acceptance

Recently, I engaged in a conversation with another parent about Autism Acceptance.  The conversation became more than that as discussions of sensitive subjects are want to do.  There came the moment that I had to exit the conversation because it was not going to a place of productivity.  And I left with words on my tongue that I am going to share here.


It is clear to me that there isn’t a real understanding about what acceptance of Autism means.  The parent that I was discussing this with had a very different idea than I do.  My guess is that her feelings represent many of the objections to acceptance.

  • Acceptance does not mean neglect.  It does not mean that Autistic children do whatever they want, whenever they want.  It does not mean that parents who accept their children as Autistic people do not have boundaries and expectations of their children.
  • Acceptance does not mean that we do not take active roles in the education of our children.  It does not mean that we do not pursue accommodations that will allow our children to thrive and acquire life skills.  It does not mean that parents do not have educational expectations.

Obviously, I am speaking for no one but myself.  But when I think of accepting my daughter, these are some of the things I consider.

  • I have reasonable expectations of my child.  For instance, my child does not have a sophisticated method of communication.  I accept that she might flop to communicate that she does not feel well, that she is overwhelmed, that she is tired, or that she plain old objects to my request.  I accept and respect that this is her way of communicating important things.  Accepting that this is her current method of communication does not mean that I do not pursue a more robust form of communication on her behalf.
  • I have reasonable expectations of my child.  She has sensory issues–both aversions and seeking.  I do not expect that she will eat whatever I put in front of her.  If she doesn’t like what I offer, then another healthy alternative that I know she will eat is offered.  It does not mean that she gets to replace spinach with chocolate–spinach with broccoli, or carrots, or peas, yes.
  • I have reasonable expectations of my child.  Holiday gatherings are difficult for her.  As much as I would love for her to enjoy a big house full of loud people, she does not.  I accept that she needs to escape to her man cave whenever she wants.
  • I have reasonable expectations of my child.  I accept that she has an agenda and interests that are different from my own.  I accept that I need to engage in activities which she finds enjoyable.  And I expect that she will tolerate activities which are not of interest or aversive to her.
  • I have reasonable expectations of my child.  I draw the line when she endangers herself or others.  I draw the line when she encroaches on the rights of other people.
  • I have reasonable expectations of my child.  She does not like to make eye contact or engage in many other conventional social behaviors.  I accept and respect her right not to make eye contact or orient her body in certain ways.
  • I have reasonable expectations of my child.  I understand that self stimulation fulfills a need for her.  I do not expect her to keep quiet hands.  I accept that she flaps and that there is no logical reason why she shouldn’t.
  • I have reasonable expectations of my child.  When it comes to her education, I do not have lesser expectations of her.  I accept that her needs are different.
  • I have reasonable expectations of my child.  She has a neurology which is very different than that of most other people.  I accept that she needs more supports and more accommodations to achieve educational goals which are meaningful to her.  I accept that it is my job as her parent to pursue those supports on her behalf.  Relentlessly.
  • I have reasonable expectations of my child.  I accept that she has no interest in looking like everyone else.  I accept that she has no interest in behaving like everyone else.  I accept that she has no interest in being like everyone else.  I accept that she is an individual.  I celebrate her as a unique individual with strengths and weaknesses.

As a parent, it is my job to accept my child as she is.  To love her because of, not in spite of, her differences.  To love her unconditionally and to teach her to love herself…even though many people, tragically, do not accept her.

to be continued….


Autism Acceptance Day

It is Autism Acceptance Day, Evie.

This year, I am incredibly grateful to have found a community in which I can celebrate you–where people will celebrate you with me.

I am grateful to know people, your people, who are busy every single day building the world in which I want you to live.

I am grateful for the sacrifices that these people have made and continue to make so that you will be safe and thrive.

I super duper love so many of your people, Evie.  They are kind, sweet, compassionate, passionate, interesting, brilliant, and brave beyond words.

Sparrow, Alyssa, Kassiane, Emily, Ibby, Amy, Sharon, Nick, Paula, Cynthia, Rose, Emily and all of the others that have touched our lives and hearts…today and everyday, I am celebrating you as beautiful people and champions of what is right and good.