Sorry, Not Sorry

Last night I wrote a scathing email to school that used the words "disability discrimination" and "due process." This morning I apologized to teachers and direct care staff for having to write that email, and assured them that I love them, Flynn loves them, and I know that they're awesome and they are doing the best they can.

I hate this pattern. Why can't kids get the help they need without the bureaucratic interference? If I have to push this hard to get, at best, mixed results, what happens to all those families without my substantial resources and education? Can't we leave decisions about individual children up to the people who actually see those children every day?

Watch this

A Touchy Subject

We are coming up on April, a fraught month for autism parents like me, who want to raise awareness about autism, but don't want to further the stigmatization of their own kids. I recently wrote a post (which you should read, if you have not) that touched on why I don't support Autism Speaks or their particular brand of alarmist and dehumanizing rhetoric, but there's an important angle I didn't address.

Namely, the enormous harm that rhetoric does to the parents^ of autistic kids, in particular those parents whose kids have not yet been diagnosed. Let me explain. 

Flynn has a friend* who . . . shares some similarities with him.  With the caveat that I'm really not sure the other little boy is autistic, that I'm not a doctor, etc., etc., here's what I've observed directly and learned from his parents: Extreme clothing sensitivities (mom says there are 2 pairs of pants he will wear, everything else is too rough). Food limitations. Sleep issues. Does an amazing happy flappy dance (maybe he learned this from Flynn?). Very rigid parameters of "acceptable" play, including very limited "pretend" play, according to his mother.  Super smart.

Sounds . . . pretty damn familiar.  It's checking a lot of boxes. Again, I don't know the full story, but let's pretend, just for the sake of argument, that he's on the spectrum.  What would the ideal thing be for me to do?

Well... What would I want, if it were my kid?  I would want someone to say, "Hey, that sounds really familiar - my son has all of those issues and we found out they were all related to his autism.  Maybe get that checked out?"  Totally reasonable, right? It's exactly what you'd do if you suspected the kid had a food allergy or asthma, or something, right? 

Okay, so I'll just do that.  *Dials their number.

HA!!! Just kidding!!! That would be fucking ridiculous! NEVER gonna happen!

Because I know exactly how that little boy's parents would react if I said those words.  The wife and I have made these attempts in the past. The most inoffensive, bland, vanilla comments possible....

"HOW DARE YOU!" "TOTALLY INAPPROPRIATE!"  "MY CHILD IS NOTHING LIKE THAT!"

Fun times.

That is the reality of autism awareness today.  And why do we think parents react like that?  Why did I immediately turn into a teary, emotional mess when Flynn got diagnosed, despite the fact that he was (and still is) obviously brilliant and an awesome kid?  This was my reaction when Flynn was diagnosed.  I was such a n00b, not to mention a total mess.

Because autism awareness, in its current form, is all about the tragedy.  All about how hard autism is on parents.  All about how autistic kids are doomed forever, limited forever.

And that's because raising "autism awareness" isn't the goal.

Raising money is the goal.

If you actually want to increase "autism awareness," then autism parents, in particular those with kids who are not yet diagnosed, need be able to recognize their kid in the description of what autism looks like.  And no one recognizes a tragedy, because no one sees their kid that way.

A diagnosis can help give parents the tools to understand their child. A diagnosis can let you in on the secret of how that child experiences the world. A good early diagnosis is fucking vital for both parent and child.  The other day I was talking to someone about Flynn's behavior before his diagnosis and I nearly had a panic attack. I consistently made both of our lives miserable, because I didn't know why he was reacting to "normal" discipline in such an "abnormal" manner. This post at Diary of a Mom sums up my daily experiences from that time pretty nicely.

Post-diagnosis, I know that a suggestion that my kid might be autistic is the farthest possible thing from an insult. It's an offer of solidarity and support. My son's neurology isn't a death sentence or a tragedy. He's fine. We're fine. What he needs is a world that acknowledges his differences and says, "That's cool - I can handle that."

So this April, I'm not going to light it up blue for autism awareness. Instead, like all the cool kids, I'll be trying to increase acceptance of autistic differences. Because this kid is awesome.

 
^ And of course, the harm to parents flows directly to the autistic kids themselves.
* Actually, Flynn has at least 4 friends, both male and female, who exhibit potential autistic traits, including the ones I listed above.  None of these children are diagnosed.

Easy

The first thing Flynn said to me this morning, as he was hugging me hello, was, "Is school over yet, for the day?"  He was asking if he had to go to school today.

Oh great, I thought.  Gonna be one of those mornings.

It was a bit whiny.  Occasionally fussy.  But it wasn't a huge struggle.  And then we got out of the car and he was totally, 100%, fine.  We walked in, grabbed some food from the cafeteria, walked up to his classroom, and he was . . . perfect. 

I don't know why today was different, but I'll take it. 

Finding the Real Struggle

One of my primary struggles as a parent is to step back from any given situation and ask myself, "Why am I doing this?  Am I helping anything?  What would help?"

As usual, I failed miserably at stepping back from an escalated situation this morning.  If there's one thing I hate doing, it's causing a needless meltdown, but when it's coming, in that very moment, I have such a hard time changing track and moving away from the source of conflict.  Sounds like someone else I know.  Apple, meet tree.

Me: Flynn, please zip your coat.

F: I can't!

Me: I know you can do it. You do it all the time.

F: I CAN'T DO IT! YOU DO IT FOR ME!

Me: Of course you can.  And that's not how you ask. How could you ask me to do that nicely?

F: ZIP IT UP FOR ME!!!!!!!!!!

Me: (walking outside) Okay fine, you don't have to do it. Let's go.

F: YOU ZIP MY COAT!!!!!!!!!!
etc. etc. etc.

Proceed to screaming meltdown outside by the car: "YOU HAVE TO ZIP MY COAT FOR ME!!!"  At least he didn't start chasing me around and hitting me.

Fighting about putting on his coat can suck it.  I reeeeeeeally can't wait for summer. 

Getting the coat zipped has been a ginormous struggle recently, so I stepped in it just by bringing it up.  I don't know why, but he has decided that this is my job, when we're leaving the house.  He's been slowly getting better about doing everything else to get ready in the morning (getting dressed, brushing teeth, shoes, etc.), but has regressed with zipping the coat, which he has been able to do since he was barely 3. Two steps forward, blah, blah blah.

In the grand scheme of things, who cares?  NT kids fight with their parents on stupid things like this, too, right?  (Right?  I'm really asking - I have no idea).  My problem is that, in the back of my mind, I always have that nagging "superior parent" voice, telling me that if I just demanded more from him, he'd do more:

Aren't you failing him by letting him off the hook and giving in?

Aren't you teaching him incompetence?

The world's not going to go easy on him.

And as a dad, society tells me that it's my job to teach him to be self-sufficient.  It's supposed to be my job to be the tough one.  That's not how we roll in our house (I'm usually his source of comfort), but these things are . . . deep . . . inside me; sub-conscious.

Looking back, I know that I went wrong by assuming that his words accurately expressed his actual problem.  There's a reason that literally the final step in getting ready before actually walking out the door keeps coming up as a point of struggle.

Transitions.

Anxiety.

Obviously.

He almost never tells me his real problem - my assumption is that, most of the time, he can't verbalize it.  He might not even recognize the real source of his problem if it were pointed out to him.  In this case, he told us his real problem 5 minutes before we left - he didn't want to go to school.  The zipper was just the straw that broke the camel's back.

When in doubt, assume he's scared.

Also, I really need to tell those voices to fuck off.  If he's struggling, the answer is to add understanding and love, not to burn the whole place down.

 "Will you come find me,

If I crash and burn?"

Crash and Burn, Angus & Julia Stone

An Introduction

The other night my wife asked me why I started writing this blog, and I . . . didn't really have a good answer.  I told her, basically, that it was for my own mental health, but that was obviously a lie.  Since when do parents do anything for themselves?  Obviously, this is an ego-driven vanity project that's all about world domination.

Not really.  But it was a good question.  Who the fuck am I and why should you read this blog?  What the hell am I doing here?

I'm a dad.  I'm a lawyer.  I live in DC, and I have two boys.  My son, Flynn, who is almost 5, is autistic.  My younger son is about a year old and appears, so far, to be neurotypical, though it is much too early to know for sure.  Most of my free time is spent doing things with my kids, for my kids, or thinking about my kids.  I spend a lot of my time trying to understand life with autism and researching services that could help Flynn succeed at home and at school.

My reading on autism, more than anything, has motivated me to write.  In my relatively short autism journey, I've seen lots of experts on autism being . . . wrong about autism. Not just wrong, but immensely wrong. "Experts" misleading people for their own gain, selling them on the idea that broccoli will help "cure" autism, or circumcision causes autism.  I've seen and been outraged by the Autism Speaks videos advancing the narrative that autism is a tragedy that they are fighting against (which I will not link, because fuck them, for reasons I discuss below).

There are so many well-meaning parents out there being sent in totally counterproductive directions. 

I can't stop all of that, but I can do one thing: I can be an advocate for my boy and kids like him.  To me, that means always being on their side.  A lot of people who should be advocates are busy doing something else entirely.  I recently re-watched an Autism Speaks fundraising video, and I saw so many pieces of Flynn in each of those kids.  I know I wasn't supposed to (since the parents were all talking about how much of a burden their kids were), but I found them so beautiful.  Then I heard a little neurotypical girl in that video say, "I wish I didn't have a sister with autism."

That little girl pulled my fucking heart right out of my chest.  Hearing those words hurt me more than anything has hurt me in a long time.  Because right then and there, I understood the whole point of that video.  That is what all those parents had been saying, without coming right out and saying it. After it hurt me, it made me so angry.

Because I have two kids, and my kids are equally valuable.

Because my younger son loves his brother more than anything in the world right now, with the possible exception of his mommy, and I intend to help that love endure.

Because if you teach your kid to hate their sibling's autism, you are helping to model prejudice, discrimination, privilege, bullying.  You are the fucking problem.

I will do everything I can to teach both of my kids to accept themselves and each other in their entirety.

What kills me about that little girl's statement, is that she apparently has a much better understanding of autism than the adults who run Autism Speaks. She understands that autism is integral to her sister's identity as a human being, as do the adult autistics who I know and love.  If she did not, she would have said, "I wish my sister didn't have autism" or "I wish my sister could be cured of autism."  Instead, the little girl wished her sister away completely, dehumanized her completely, because she had been taught to hate autism.  And if I know anything about my boy, it's that if you hate his autism, you are hating something quite central to who he is.

I don't hate autism.  I love my boy and his autism.

I want him to know that I will always have his back.

That is why I feel the need to write this blog.  Most parents want to support their kids, but unlike most parents, I have a kid with some extra obstacles.  Most of these obstacles are external to him: the world doesn't fit his needs in the way that it would if he were neurotypical.  I see Flynn struggling so hard to hold himself together every day, and I have come to expect that I will need to fight harder for Flynn in his daily life than most parents do.

I'm happy to do that, but it's not really enough.  The people who speak "for" my son (or for his autism, maybe?  I'm confused) at a national level keep perpetuating an image of him and his peers that devalues, debases, dehumanizes him.

Hopefully, I can offer a (very small) counterbalance to this rhetoric by talking about my reality and Flynn's reality.  My boy is so beautiful and his personality is so full, that he deserves to have his story told accurately.  Hopefully, other people who read this blog can find a piece of their own truth reflected back at them in a way that helps get them through the day.  And maybe writing this will help me get through the day as well.  That way, we all win.

Tragedy

Autism is not a tragedy.  A broken apple bar is a tragedy.  We survived, but I'm not sure how.