It is gone now.  But I still remember that feeling of endless pressure.  The weight simultaneously pushing and tugging us down.

Insistent.  Unyielding.  Relentless, in its effort to sink us in a sea of our own tears.

Yeah, I remember that.

I hope Evie has forgotten.

Evie was a tiny baby when we started getting the message that something was “wrong.” That Evie was “broken.”

With the simultaneous message that we could “fix her” with therapy.  But that we needed at act quickly.  We needed to intervene before the developmental window slammed closed.

And of course, this message was not delivered in those words.  It was delivered gently by kind people with the very best of intentions.  And maybe that wasn’t even the message they wanted to deliver but that was what I heard.

So the early intervention started.  Really early.

I remember spending countless hours obsessing over Evie not being interested in stacking blocks or scribbling on paper.  I believed that if she didn’t do these things, that she would never do anything that “comes after” on the developmental timeline.

I remember stressing out that Evie wasn’t interested in toys.  Because that is what babies are supposed to do–be interested in toys.  I remember spending a small fortune trying to find that toy that would break through the divide and engage Evie.
I remember the longest questionnaires aimed at assessing Evie’s developmental age.  But serving as a reminder that Evie was broken, that I was not doing enough, and that we were inching ever closer to that moment in time that the developmental window would go slamming shut forever.

I remember all of the therapy sessions.  The hours and hours of therapy.  And the therapy “homework.”  And the guilt no matter what I did.  Guilt when Evie would cry and protest.  Guilt when I wouldn’t push her to do her homework.

I remember making comments about wanting to ease up on therapy.  Wanting to give Evie more time to be a baby/toddler/kid.  And I remember the gentle reminders about the developmental window.  And the threat of regression if we eased up.

Evie didn’t start crawling until she was about 18 months old.  As I mentioned before, Evie didn’t do toys.  But she did do books.  She loved books.  We spent hours and hours reading books together.

One of the books that I bought when she was a tiny newborn, “And Here’s to You!” was her favorite.  As soon as she could communicate her choice, that was it.

And we read that book over and over again every day, along with a few other favorites.

Was this need to read this book repeatedly one of the first signs of Autism?  Probably.

But it was also much more than that.

“And here’s to you!
The You Person!
You!
Here’s to the sweet you,
The messy and the neat you,
The funny way you eat you,
The head to your feet you,
The bones and the meat you,
The total and complete you.
Oh how I love you!
The You Person!
You Person You!
Yes!
You!
I love you.”
(excerpt from david elliot’s, “And Here’s to You!”)

These were the words that Evie needed to hear.  The words that I needed to repeat and repeat and repeat.  Not to make them true.  But to keep them true.

It might not have been the words.  It might have been her picking up on the feelings of deep and unconditional love that they evoked in me.

Those were part of what kept us floating.   And safe from the words that threatened our buoyancy.  Words that conjured feelings of brokeness.

Those were the words that probably planted the first seeds of rebellion.  Rebellion against the system that insisted that Evie be fixed.  Insisted that she needed to develop according to that specific timeline or not at all.  Rebellion against the notion that we needed to treat, intervene, and fix.  Rebellion against the message that she is–that we both are broken.

Rebellion against compliance.  Hers and mine.

I’m so thankful for that simple beautiful book.  For being an anchor.  To Evie for gravitating towards it.

Because sometimes we used to sink.  Now we float.

Hindsight burns my eyes.  My post, yesterday, about the feelings of being pulled down when Evie was teeny tiny resulted in me rereading my earliest posts.

Each time I do that, I cringe.  And fight the temptation to edit–to revise my history.  Some of the stuff I wrote is damn embarrassing.

Like the one where I preach person first language.

Or the one where I laugh at my husband for labeling Evie as “high functioning” and proceed to “accept” inevitable incompetence.

Or where I talk about Evie living in her own world.  There are actually lots of those, I think.

Anyhow, you get the picture.  My thinking has evolved quite a bit.

I know that it continues to evolve and that I will probably always want to edit my evolution. That this very post will very likely mortify me in some way if I read it three years from now.

It feels like I have always felt the exact way that I do today.  About everything.

The old posts serve as a reminder that I didn’t.  And that there was a definite turning point–when Autistic adults reached out to me.  You can see that turning point and the first overtures that my Autistic friends made to me in the comments here.   You can see where Cynthia reassures me that Evie might not be lonely as I had indicated thinking in that post–but content to be alone.

What you don’t see, is the private conversations I had with people like Sparrow and Alyssa.  People who gently and lovingly taught me about things like the problems with person first language.

Sometimes, I’m too hard on people.  I don’t remember what it was like to not have a community of Autistic adults supporting me.  I forget that almost everything works against parental understanding and acceptance of Autism.

Sure, some people need a hard hitting wake up call to see the light.  Some will always live in the dark.  But others need what I was blessed to have–the loving support and guidance of Autistic people and parents like Heather, Michelle, and Ariane.

I was given a chance.  I believe that, for the most part, I’ve honored that chance–made good on the leeway I was given for my ignorance.  I need to extend that some leeway to other parents–not the ones who take the chance and spit on it.  But the ones who haven’t had the opportunity to be supported by the community of people that promote the love and acceptance of Autistic people.

I need to give other parents the opportunity to learn and grow without automatically condemning them for that which they don’t naturally understand.  Like I was given.  And continue to be given.

So that’s me owning my history.  And me apologizing for berating those parents who simply have not been given the opportunity to parent with the support of a community that advocates love and acceptance.

This is me committing to giving parents (those that are receptive) the road map to community and the space needed to evolve.

Mostly this is me being grateful for the community that embraced me.  Embraced my family.

I went offline for about 24 hours and came back to another true story about a mother murdering her Autistic child.

And right now, I can’t regurgitate the same things I’ve been saying every other time an Autistic child is murdered by his/her parent.

I just can’t.

What I can do.  What I want to do.  What I need to do is unequivocally deny the claim made by Dee Shepherd-Look regarding Autistic children.  In an interview with NBC News, she said that she was surprised that Autistic children are not murdered by parents more often and, “These children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child — the bonding is mitigated,” she told NBC News. “That is one of the most difficult things for mothers.”

She’s an expert who runs an “education group for mothers of Autistic children.”

We don’t need more uneducated experts dangerously mis-educating parents and the general population about Autistic people.

Autistic people love.

Autistic people are perfectly capable of reciprocal relationships.

Take it from me.  I’m an actual expert on having reciprocal relationships with Autistic people.

I’m in many, in fact.  Loving, two way friendships with the most lovely people–Autistic people.

And I am in a loving relationship with my Autistic daughter.

My Autistic daughter loves.  That picture above?  That’s her loving her younger sister.

She lavishes love and affection those close to her.

She loves.  She loves.  She loves.

Don’t tell me she doesn’t love.

She LOVES.

Think Autistic people are incapable of loving?  That says more about you than it does about the people you’re mis-characterizing.

*** I don’t have the energy to devote to critiquing murder apologists.  But others have done a heartbreakingly wonderful job.  So if you’re inclined to say, “Walk in the mother’s shoes” after reading about a 6 year old being tossed 130 feet off a bridge into ice cold water by his mother?

First read this:
“Here, try on some of my shoes.”  by Radical Neurodivergence Speaking

Then read these which are specific to London’s murder:
“Not again…#Justice for London” by Kimberly Faith of Eccentricities and Introspection
“#JusticeForLondon” by Heather of Raising Rebel Souls
“.…I dare you.” by Michelle of Amazing Adventures Parenting Autistic Children
“Murder of London McCabe, Age 6” by Paula Durbin Westby
“Faces” by Lei of Autistic Times Two
“Another Child” by ischemgeek

#JusticeForLondon