Month: March 2018

Happy birthday, sweet child

Happy birthday, sweet child

Tomorrow (specifically evening), Speedy turns 8 years old.  It’s hard to believe from his rocky beginnings how far he has come.

This was a child who nearly didn’t make it- when I was 25 weeks pregnant, my husband and I were in a car accident.  The van slid on black ice across a T-intersection and went off the other side, over a 12 foot drop.  First our van went, and then we watched in shock as three more vehicles slid through the same intersection and were airborne overhead (and luckily off to one side of us).

I spent four days in the hospital with internal bleeding, and there was great concern over whether we’d need to leave our hospital to be transported to a facility with a neonatal intensive care unit.

Speedy had other plans, and decided to stay put until he was full term.  Whew.  Unfortunately, the damage caused by the accident also caused him to be under great stress during labor, and I found myself watching a nurse who was watching the monitors.  “Come on”, I implored her to just tell us what was wrong.  The doctor arrived, and went pale when she saw how low his heart rate was. My husband and I all but begged her to just tell us straight what was going on, and she breathed a great sigh of relief when we said that of course we would agree to the cesarean section.

Some amount of time later (I really haven’t the foggiest- those medications they give you are spectacular), my husband was telling me that his first child was here and oh he’s so amazing and beautiful.  What I didn’t know at the time was that he was grey and not breathing and definitely not responding.  My poor amazing stoic husband, after so many years working in emergency medicine, knew exactly what was happening and wouldn’t tell me. Not then.

It wasn’t until many hours later that I would be told the tale of my not really alive baby who they revived.  And even now today I recall the shock and the pain of being so close to losing him.  Twice.

IMG_0329

I have to think that with everything he’s been facing for the past few years that there must be some connection between in utero trauma and his trouble with emotions, attention, and many other things.  And we’re starting to explore ways to support him best, keeping in mind that we may never know if this impacted him at all.

At the end of the day, I see this amazing child, this champion of friendship who loves with his whole being, who smiles with his whole face, who throws himself body and soul into everything he does.  He wants everyone in the world to be his friend, and he wants everyone in the world to be happy.  And what an incredible gift he is to us, to the universe.

RikerLove_12042016_©RachelPhilipson_4133
Photo credit: Rachel Philipson
Autism  Acceptance Month

Autism Acceptance Month

What do a lightbulb, a puzzle piece, and the color blue have in common?  Well, nothing actually, unless you’re talking about a potent marketing campaign by an organization who markets autism (Autism Speaks) much in the same way that another organization markets breast cancer (Susan G. Komen Foundation).

It’s March and we’ve made it through another winter full of snow days and illnesses and have come to (almost) spring weather relatively unscathed.
With this warmer weather brings an annual event which makes my eyelid twitch: Autism Awareness Month.

Now, don’t get me wrong- I get the need to raise awareness. Which leads me back to the lightbulb, the puzzle piece, and the color blue.  While the marketing is strong, has anyone actually learned anything from the Light It Up Blue campaign, the puzzle piece merchandise, the fundraiser walks?  Has anyone not already up to their elbows in autism actually walked away with a better understanding when April slips away and May is in full swing?

I’m going to say NO.  Because several years ago, I was among the population of people who knew nothing of autism.  Because I knew that people got blue light bulbs and wore their puzzle piece pins, but I had no clue what any of that meant. Because I still talk to families new to the diagnosis who feel lost.  And because the organization behind that movement really wasn’t trying to raise awareness- they were (and still are) trying to raise money.
Why are their chosen symbols a problem?

  • The color blue was chosen because the AS founders had an autistic grandson.  They literally chose the color because he’s a boy.  That’s the only significance.  There is a massive difficulty in obtaining diagnoses for girls and women because the diagnostic criteria only considered this to be something found in boys.  Autism looks different in girls and women, and this “blue washing” has basically ignored the girls who are fighting for the diagnosis that will help them obtain supports.
  • The puzzle piece has left the autistic community feeling as though they are looked at as having pieces missing.  This is never okay.
  • I don’t know about the light bulb, other than it was just a clever piece of marketing at the time.

Now, sure, they’ve reworded their mission statement to sound less inflammatory.  They’re under new leadership and they’ve even added two autistic people to their Board of Directors.  Two.  People.  But when you dig a little deeper, and I did, you find that their mission really hasn’t changed.  They state in their “For The Record” page (I’m not linking here- you can go find it but I don’t want to send people from my page to theirs) that because science tells us that there is no single “autism” that there is surely no single cure. Yes, they actually state this:

Screen Shot 2018-03-04 at 11.43.30 AM
I can’t help but notice that statement- there will be no single cure.

So, here is a short list of autism facts and information, to help with understanding/awareness:

  • Autism is a neurological processing method, not a disease (ergo, no “cure”)
  • The social “difficulties” that go hand in hand with autism are often a matter of neurotypical people not understanding the many ways in which we communicate (why we need understanding and acceptance)
  • Sometimes, behavioral issues come about when people are not provided with all of the information they need or the communication tools they need. This can be solved with the help of teachers, parents, therapists, and friends!

Now, did you need a blue lightbulb profile pic frame for that?  Would that photo frame on your Facebook profile have done anything to help anyone else become aware?  No.

And frankly, when the autistic community continues to very clearly say “AS is damaging and doesn’t speak for me!”, you really ought to listen.

SO.  What now? What organizations can and should we support to further autism acceptance and flip the script from [damaging and evil] to [a world of interests, a strong love for friends and family, and an uncanny ability to be open and honest]?

My top pick is Autistic Self Advocacy Network (ASAN, for short).

I want you to watch this video, if you please:

ASAN works to dispel the myths, present the facts, and to help people move out of “awareness” and into #autismacceptance.

I’ll continue the “who to support” conversation in April,  but I really needed to get this off my chest.

In April, and every month, I ask you to join me in moving the narrative in this direction.  Do you know someone who doesn’t know anything about autism?  Help them to learn, understand, and accept the members in their community who are autistic! Get to know the facts, and not the hype.  Understand that this is not a travesty, this is not an epidemic, this is a neurological functioning and neurodiversity (the many different types of ways people process the world around them) is a beautiful thing.

Neurodiversity_Logo
A widely accepted symbol for the neurodiversity movement- an infinity symbol with a spectrum of color.