Friday, November 13, 2015

Terror in Paris


****Content warning: This post discusses the Paris terror attacks, 9/11, and is one of my occasional forays into non-autism blogging.****

Wounded people are evacuated from the Bataclan Theater in Paris

On September 11, 2001, I was living temporarily with friends in Portland, across the country from my then-permanent residence in St. Pete, Florida.  The phone rang just before 6:00 am.  My friend Phillip's girlfriend, who was working as a journalist on the east coast, was calling.  She told him to turn on the TV.  He did and immediately started shouting for us to come see, waking the rest of the house.  Five minutes later, we watched the second plane hit the South tower and understood unequivocally that we were witnessing a terrorist attack.

That weekend I went to a march and rally for peace in downtown Portland, as it had become immediately and painfully obvious that the Bush administration would use those horrific attacks to justify some form of war in the Middle East, likely entirely unrelated to the attacks themselves.  I knew that protesting was essentially pointless, but I felt like I had to do something. I was, regrettably, quite correct on both points.

Tonight, on the bus ride home, I looked out the window and saw a news ticker on a television playing CNN through a bank window, "At least 60 killed in Paris terror attacks."

"Holy fuck," I swore, involuntarily.

Every time this happens I'm back in front of our crappy 24 inch Portland flophouse TV, watching Flight 175 turn into a fireball.

The death toll tonight is over 150 with over 200 more injured.  Francois Hollande is calling this a war and American idiots are calling for a ban on refugees.

So.  Here we are again.

French exchange students sing La Marseillaise in NYC's Union Square

Words are fully inadequate in this situation, but believe me when I say that I understand and I'm so sorry.

And if I can speak from experience very briefly: this may be a war, but it will not be won with guns.

In solidarity.

One World Trade Center, lit in blue, white, and red

Monday, October 19, 2015

Tuesday, September 1, 2015

Drop off

Rough drop off this morning, with the boy clinging to me. I cut a deal with him that if he would go in by himself, I'd stay and watch him for a few minutes through the window.

I watched morning meeting start (circle time, when the kids greet each other) and saw him ask for and put on his headphones. He looked up and saw me watching and shot me a small smile.

I hope he had a good day.

Sunday, August 30, 2015

Super Lazy Sunday

We have done literally nothing today.  All the relaxation.  The need to recharge for the coming week is strong.

Sunday, August 23, 2015

River Tripping

As I mentioned on my Facebook page a week or so ago, Flynn and I went on our annual family river trip last week.  We did it last year as well, and it was . . . rough.  Hard on him, hard for me.  The trip last year was only a few months after his diagnosis, and I was having a hard time managing my own emotions, as well as his. This time I was ready.

Flynn did amazing!  By the last day on the river he was tired and struggling, but he pulled through and did awesome.  I'll start at the beginning.

We left after a night at my parents' house, which is nearer to the airport than our own.  Flynn had his headphones on as soon as we got out of the car.  I did curbside check-in for our luggage and, after talking to a airport volunteer, got sent through the staff security check-in line with an escort all the way through security.  It was awesome.  I told them he had autism and we needed an expedited route through security and we were through to the gates in 3 minutes.

Waiting at the gate with his fidget.  Headphones off for the moment.
We took advantage of the pre-boarding for every plane, and the flights were smooth and painless.  He likes flying, but also needs to be entertained.  Thank God for iPads....  He kept his headphones on for most of the flights and throughout the entire trip home.  I think it's more a security thing than anything else, as he tolerates noise better than he used to.  Or maybe I'm just used to his sensitivity and am underestimating it as a result.  Hmmm.

We arrived in Colorado and my brother met us at the airport.  Flynn was happy to see him and was SO entertained by the baggage carousel.

ALL the happy flaps.
Telling me how it works.
It was pretty awesome entertainment for the wait.

We stayed the night at my uncle's house, and got on the river the next morning.  The river is a good 4 hour drive from my uncle's house: the amount of driving out west is a significant source of anxiety for me on these trips, as Flynn doesn't always do well in the car.  However, he did a great job and handled the wait to get on the river well, playing nicely with his cousins the whole time.

Once on the river, he was even better.  He did great with the water fights (a huge thing for our family), telling everyone about his "potato gun" which was "11 times more powerful than a regular water gun" (it was a regular water gun).  I did not need to be constantly at his side, as I had last year, and he was comfortable on the other boats with the other kids.  I could tell he was having some underlying anxiety because he was chewing his lips pretty badly, but he held himself together well. 

Flynn laughing about a joke with my brother (in the background with the hat) and two family friends.

My Uncle John, with his guitar.
So.... then my phone died.  Others, more prepared than I, took a million pictures.  Here are a few good ones.

Flynn and I at our first camp ground.
Flynn batting and my brother catching.  Ball in flight.

Flynn playing with his uncle Paul.
Sunset on the San Juan, Big Stick campground.
After four days on the river we got off and drove to a restaurant, a family tradition which we skipped last year.  On the way, he was cranky and very clearly in the "rumbling" stage of a pre-meltdown, with lots of anger coming out in bursts.  Exhaustion, hunger (thanks, food strike!), and lack of routine were finally catching up to him.  At the restaurant the rumbling continued.  I ordered a massive pile of food as soon as we were seated and asked the waitress to bring it as soon as possible.  She didn't, and he spilled a glass of water and melted, sobbing hysterically into my chest. 

But sometimes a meltdown is the outlet he needs: he'd been holding it together for so long and he just needed to get it out.  After his tears he was fine. The food arrived and he ate more than I've ever seen him eat.

The drive back home was easy, and we slept well that night, waking to get on a plane early the next morning.  He was a rock star the whole trip back, even with the nearly two hour delay while we waited for luggage.

Brief stop in Denver to touch these lights.

Waiting for bags.  Thank god we stopped for fries and apple juice.
Lesson learned: never check a bag.

Getting back to his routine the last couple of days has been hard, as I expected, but it was a great trip and we are looking forward to next year.  Thanks to all the friends and family who made it possible.

Wednesday, August 12, 2015

Drink Your Camel's Milk, Son

Oh, internet.  On good days you bring me humor and joy, with a side of salty gossip.  On bad days you bring me all the semi-rational rage.  Today we got the latter.  See if you can spot the cause:


It's subtle!  I'm sure you're mostly hung up on the fact that I was googling a farm that produces camel's milk, but let's move past that for a second.  I'll come back to it.  For now, just read the second line down in that ad.  You will see, "Helps with Autism."

Now, if there's one thing I know, it's that my son would never drink camel's milk, which they describe as tasting, "just like milk," except "salty." 

However, I'm also pretty sure that if I were somehow able to get him to drink it, I would not see any appreciable behavioral benefit. They base their claim that the milk "helps with autism" on a single (8 page) study of 60 autistic children, whose parents were asked to administer camel's milk for two(!) weeks.  The study was conducted by a government-run university in Saudi Arabia, which I'm sure was in no way influenced by any vested interest in finding medical benefits to a local specialty product.  The study found a very mild (approx. 2 points on a 60 point scale) decrease in CARS scores for subjects who drank camel's milk compared to a cow's milk placebo. 

Now I think the advertisers probably have themselves covered from a legal perspective.  You will note that the "science and research" link on the ad mentions "anecdotal studies."  They're admitting right up front that the claim isn't really based on a whole lot of hard science.  They also note on their website that camel's milk hasn't been tested or approved by the FDA to treat any medical condition. 

But as we know, autism parents are desperate to find anything that will help their kids.  Phony cures and treatments abound, and they range from relatively harmless to outright dangerous quackery .  And while this is on the "mild" range of that spectrum, it still pisses me off to no end to see that the attitudes behind these supposed cures are nowhere near changing.

Do I think anyone is likely to be harmed by drinking a few bottles of camel's milk?  No, probably not.  But it does make me mad that autism parents (who are often quite stretched financially as it is) are being sold on the idea of paying $18 per 16oz. bottle (minimum order six bottles!) for probably a quite minimal behavioral improvement at best.

Are there people desperate enough to do this?  Absolutely.  After last year's infamous broccoli study, parents on a local special needs listserv I follow were lining up to order broccoli extract to add to their child's regimen.

Now, more broccoli also has never hurt anyone, but . . . seriously, people.  Can we stop pathologizing autistic children to this extent?  I can't blame anyone for wanting more words, better functional communication, better executive function, or a greater ability to focus.

But . . . guys, what if there isn't a silver bullet out there?

You know what I have found that works for my kid?  Love and effort.  Lots of patience, tons of love, and a huge amount of hard work from all parties: him, us, his therapists, and his teachers.  Oh, and time.  All of that together has led to huge improvements.  And I'd take that over salty milk any day.

And to any salespeople out there who might be thinking of us as your target demographic because you think our kids are broken?  You can fuck right off.

Thursday, July 16, 2015

Thursday, July 9, 2015

Tuesday, June 30, 2015

Best Practices

When Flynn was diagnosed with autism just before his fourth birthday, I knew next to nothing about it.  I mean, I knew him and his "quirks" very well, but if you had asked about the interplay between those quirks and the diagnosis, I would have given you a blank stare.

A year later, I've educated myself. I probably read more about autism daily than most people read in their lives. This sums up my philosophy pretty perfectly.

So what have I learned in the last year? What can I share with you about how to interact with Flynn or others with autism?  Here are a few lessons I've taken away.  Some of these apply to neuro-typical kids as well, but for kids on the spectrum they can be absolutely critical.
  • Be quiet.
You know those teachers and direct care workers whose voices dominate the whole room?  The ones who are always so excited to see your kids in the morning?  "Flynn!!! Great to see you this morning!" they exclaim.  Flynn shrinks against me and buries his face in the side of my leg. If he could sink through the floor, it's clear he would.  
I just want to shake these folks. Why are you still talking to him like this when his response has been consistently negative for nearly a year? Even after a week you should be changing your approach.  I know you're an enthusiastic, energetic person - that's great.  Most kids probably love you for it.  But if a kid responds poorly on a consistent basis, maybe stop it? 
For Flynn, loud is bad. Transitions are bad. Talking to people is hard. Greeting him is great, but please try to be calm and quiet.  Don't immediately demand his attention and ask for complex social interactions that are extremely challenging for him.  Let him settle in before you go there.
  • Pleasantries get ignored.
Scene: Every morning in the hallway on our way in to school.
Annoying art teacher: *stands in front of us* "Hi Flynn!!! How are you this morning?!?"
Flynn:  Fails completely to respond.
Me: "Oh, hi.  He's fine, thanks." *walks around her*
If I ask him how he's feeling after he's been awake for some time and had time to adjust to conversation, he'll usually say something like, "Pretty good!"  It's adorable, because he really considers the question seriously and wants to give me an honest answer. Because literalism.  Flynn still doesn't understand that some things are said merely for social posturing.

Shifting attention is a big effort for a lot of kids on the spectrum.  If Flynn is focused on something else (like getting to class without melting down) and you say something benign (to you) like "what's up?" or "how's it going?" he will most likely fail to notice your attempt to engage him.  Less frequently, if he does try to engage, he has to switch his mindset from whatever he's focusing on, attempt to understand your small talk (which, if thought about literally, will often make no sense), check in with how he's feeling or what he's doing, or what is "up," and produce a response for you. 

While I have been trying to teach him (and hope that he soon understands) that these types of interactions are merely formalities, he hasn't gotten there yet. And at this point it's much more important to me that he successfully makes the transition to his classroom than that he interacts with the art teacher in a "socially appropriate" manner on the way there, so for now I will handle her for him. 
  • Get on his level.  
If you really have something to talk to Flynn about, or something cool to show him, awesome! I love when adults are curious about his interests and all the neat things he's learning. He's a fascinating kid.

But you should know that he has a lot of trouble knowing when to pay attention to you. There's a lot of random conversation out there, not much of which is interesting, so if  you want his attention, make it obvious.  Get on his level.  Show him something.  Be direct, and patient. 
  • Keep it simple.
 Processing problems are common for kids on the spectrum.  Joint attention is a common difficulty, as is sensory overload, as is simple delayed processing.  Get his attention first, then use simple language and sentence structure.  Talk slowly.  Never doubt that he's extremely intelligent, but there can be a lot of interference between your words and his mind.
  • Engage him through his interests.
If you really want to have a conversation, ask him something about space or the ocean, ask what his favorite tv show is, ask what character is his favorite.  He will tell you all the fuck about it.  You will hear more than you ever wanted to hear. 

This is pretty common for spectrumites.  Once they're on a track, they stay on it until the track runs out.  Flynn has been taught pretty well to stop when someone requests a "time out."  He will take a break and let you interject something, though he probably will tell you that he was not done.  

A friend of Flynn's who is also on the spectrum loves the alphabet.  So I play with him by working with letters: spelling, arranging letters into shapes, making letters out of other things, making funny pretend words, etc. 
If you're going to meet a kid on the spectrum, ask the kid's parents about their interests.  They will tell you the way in.
  • Don't force eye contact.
For the love of God, don't force him to look you in the eye.  He'll fuck you up.
  • Don't be surprised if we leave.
Most of the time I really enjoy parties and play-dates, and so does Flynn. Sometimes we enjoy them a bit too much. It's pretty easy for him to get overwhelmed.  Even if you don't see it, I'm watching closely for it. When he needs a break we'll either find a quiet place to relax or we'll be out of there.  Sorry!  It's in everyone's best interest.
  • Prep your kids.
So . . . this one time, I went on a trip with my brother and his daughter.  He knew Flynn had autism, but the diagnosis was fairly new.  I guess he wasn't sure what to say to her about Flynn, so he erred on the side of saying nothing at all.  She had no idea what to expect.  Flynn was moderately obsessed with trains at that point, so when it came time to play inside a real steam engine, Flynn needed to be the conductor, to pull the whistle, and to turn all the valves.  He was not about to let another kid change the way he was playing, even his cousin.  My niece, not knowing why he couldn't just play along with her, got really upset with him for being so "mean." 
This is not to bash my brother (much).  Most parents don't know what to say to their kids: that's fine.  Here's my recommendation.  "When you play with Flynn, he may want to play in ways that seem odd to you.  That's fine.  If you want to go along with it, you'll probably have fun."
Sometimes Flynn plays well with others.  Sometimes he needs constant supervision.  I can't predict which is going to happen.  If it's a good day, awesome!  If not, let me handle him - I'll do my best to direct him to activities that will lead to minimal conflict.  If he gets stuck on one thing and it's leading to problems, it would be great if you could tell your kid that he'll be done in a bit and they can come back when he's done.  I'll make sure they get a turn.
 So that's it!  You're ready to hang out with us, and all it took was a 1000 word essay!  Fun times lie ahead.  See you soon!

Sunday, June 21, 2015

Happy Father's Day!


Me holding Flynn in the hospital.  He was 1 day old.

I don't think I've ever been as happy as I was in Flynn's first year of life.  I mean, look at this kid - it's just ridiculous:

Whozat lady?
Have you ever seen anyone that cute? I mean, other than your own kids, obviously.  Okay, maybe I'm biased, but he was pretty adorable, and it just got better as he got a little older and more expressive.
Snow!!!


Ohai!
 
Happy boy.

If there's ever been a kid who could dispel the stereotype of the withdrawn and isolated autistic kid, who lives a life without an emotional range, it would be Flynn. He's always been filled with an immense capacity for joy. I mean, just look at this kid.  Again!


I FREAKING LOVE THIS RATTLE

OH MY GOD, YOU GUYS ARE SO FUNNY!!!

Okay, enough pictures.  I think you get the idea.  I love this kid.  He's hilarious

Now,  Flynn has a lot of extremely powerful emotions.  As he's gotten older, they're nearly as often overwhelmingly negative as they are astoundingly positive.  But we live for those times when he's the complete personification of joy.  It's a powerfully contagious emotion, and one I hope to see a lot more of in the coming years.

As a dad, I try to be pretty relentlessly positive, but you can easily get caught up in the difficult moments and forget to appreciate the incredible blessing that fatherhood really is.

We're so lucky that we get to help create these little beings, and then watch them grow up to be. . . . whoever they are.  We get to help shape their outlook, their perspective on life.  To help them become complete people.  That is an amazing responsibility.

I have so many hopes and dreams for my boys. Mostly, I hope they can do something that brings them joy and helps make the world a better place. Since Flynn's diagnosis, my dreams for him have developed, but have in no way diminished.  In the next year, I hope to help him focus his energy on the joys and beauty of life.  I hope to help him learn more about his gifts and strengths, and how to harness them. Most of all, I hope to help him find peace, joy, and grounding in a world that can be challenging for him to live in.

My boys are the best thing that ever happened to me.  Understanding that makes my father's day a pretty special one. 

Wednesday, June 17, 2015

Acceptance and Privilege

An old picture of Flynn with a truck
 
I've written about my enormous level of privilege before, but not in the context of autism, specifically. 

As a parent, I try to read as many perspectives as I can, and there is a clear divide in our community between folks with severely affected children and my own perspective as a parent with a kid who would likely have been diagnosed with Asperger's Syndrome a few years back.

I've long been in the "accept my kid exactly as he is" camp, but perhaps this is just a reflection of my own privilege and that of my family.  Would I feel differently if my situation were different?  For example, a friend of mine wrote this wrenching Facebook post during Autism Awareness Month:
My son's form of autism is fairly "serious", so you won't hear from me that I wouldn't have him any other way, because you bet your ass I would, even though I love him fiercely, just the way he is. And yes, those two things can both be true.+
Her son is entirely non-verbal and has no alternative means of communication, despite having attended an extremely expensive private autism-specific school for several years.  He is likely to need one-to-one support for his entire life.

That's a hard reality to confront and accept.  Other friends of mine are also struggling heavily right now, as they are coming to terms with the limitations that may exist for their autistic children.

As for me?  I don't want to change my son and I'm not mad at autism. Autism is a very clear component of my child's personality - it doesn't define him, but it's sure as hell a part of who he is. The extremity of Flynn's interests, his behavior, his sensitivities, his need for structure and stimulation, all of these are incredibly intertwined with his autism.  There's quite simply no way to lay down a marker and say, here is where the autism ends and here is where Flynn begins.

As such, I've never been one of the parents in the "fuck autism" camp.  I don't want to get rid of his autism, and I never will.  I can't.

But maybe that is just a component of my privilege.*  Flynn can talk to me.  He can explain his interests and obsessions to me.  We can talk about them, and I can introduce new interests.  He can talk through his powerful emotions and difficult moments.  I have a way in. 

But what if I didn't have a way in and he didn't have a way out?  What if I was convinced he was intelligent, but I had no way to talk to him?  What if I couldn't even tell whether he was intelligent?

Don't get me wrong - a lot of the time Flynn isn't able to express himself.  Language can be hard for him, and his needs and feelings often aren't expressed accurately or fully.  But what if he didn't have a way to tell me anything, other than through behavior?  And what if that behavior was often obsessively repetitive, serving the need for self-stimulation and regulation rather than other needs?

Well, that would suck.  A lot.  And knowing how powerfully I love my son, I'd probably want to change that.


+This quote is shared anonymously, with permission from its author.
*None of this is meant, in any way, as an excuse for ableism in language or behavior.  Autistic kids deserve respect, no matter what, most of all from their parents.

Wednesday, June 10, 2015

Success!!! For now!

Today we formally added a dedicated aide to Flynn's IEP for the next year!!!

It took an incredible amount of hard work, and we're still not certain whether it was a good faith decision from the school system or if the fact that we retained a lawyer pushed them in the right direction.

I'm still upset that it took this level of effort and advocacy, when it has been obvious that he needed an aide for over a year, but for the moment I'm going to try to enjoy this unfamiliar feeling of success.

Tuesday, June 9, 2015

Acceptance and Diversity



I'm incredibly fortunate to be sheltered in groups that work to support my son as he is and that work to include adult autistic people and perspectives.  I have learned so much from these groups, in particular from adult autistics who have been where Flynn is today. 

I'm very grateful for these sheltering communities, but it's always a painful shock when someone intrudes on a space I consider safe with attempts to impose "expert" viewpoints, which, to me, are both incredibly offensive and truly harmful.

This . . . idea . . . that we can or even should be working to "cure" a child's "symptoms" of autism, in other words, to reduce or eliminate stims, to increase eye contact despite its discomfort, to remove patterns of focus or intense interest . . .  This idea is still powerful in our community. 

A lot of people think they know what is best for our kids, or even believe that they know our kids better than we do, simply because they have studied autism and are "experts." 

Anyone can call themselves an expert.  I would not presume to do so, but here's what I know as a parent:  forcing an autistic kid to try to conform to a neurotypical ideal of "normal" is actively harmful.

Work to provide your child with positive assistance in communication and in understanding peer interactions. Work to reduce behaviors that could be actively harmful to others.  These things are fantastic.  They are not antithetical to autism.  The viewpoint that autism is a challenge to rise out of or overcome. . .  This is neurotypical privilege. Stop it. 

My child, his manner of thinking, his diverse perspective, is equally valuable to any other child's.  His neurology is no worse than yours.  It may lead him on a different path from you or me, but that path is only different, not less.

Monday, May 25, 2015

A day in the life

I tend not to use the blog as a daily journal or chronicle of our life.  I do put random snippets up on the facebook page, but nothing like a lot of bloggers.

I think it's partly laziness, partly lack of time.  Also, I tend to disbelieve that anyone could be interested in the mundane details of what happens to me over the course of a day. 

Maybe that's not true, so here goes.  I woke up, as I do every morning, with one of the kids.  Don't like an alarm clock?  Get a baby.  It's been going on 5 years, now since I've needed one.  Anyway, this time it was the baby, and it was 6:30, so not great, but not too bad.  Flynn woke up on the stroke of 7:00, and watched a bit of TV, while I tried to get the baby to eat, a futile exercise that we both end up resenting.  Giving up, I tried a bottle, which he devoured like the ravenous beast he is.

After I turned the TV off, we tried a little sandbox play, during which their apparent harmony lulled me into a false sense of security.  I wandered in to check the time and quickly sprinted back out when the sandbox turned into a war zone.  The instigator was not readily apparent, so all parties were warned and I stayed nearby to supervise from then on out.

My parents came to get the baby at 8:30, as the wife intended to work and was sick, to boot.  I played with Flynn for a while, fed him, and then put the TV on around 9:30 so I could stumble upstairs for a short nap.

The wife got up to do her work and deal with him and then sent him to wake me at 11:00 or so, hoping to actually get some work done, I assume.  Flynn crawled into bed with me, as is his wont, and we cuddled for a few minutes before I got up and got ready to go.

I then took Flynn to the playground, Dunkin Donuts (so healthy) and a second playground, near our old house.  We played soccer on the kid-sized field there and I tried to explain some rudimentary tactics, which went a bit over his head.  Then we ran back to the house to meet his ABA therapist.

We had a grad student (Masters of Education, and a current special ed teacher in a self-contained classroom in an affluent suburb nearby) coming to interview us about having a recently diagnosed child with autism for a paper.  It was interesting - she gave me a bit of the teacher's perspective, and I was impressed with how progressive her teaching philosophy was.  She had eliminated a lot of the stim-reduction techniques that had been used in the past in the classroom and was strongly in favor of letting kids use whatever coping methods worked for them.

It was good to see a strong advocate for the kids in that position, which is not always the case, of course.  She asked about my experiences as a dad, which I have explored in depth here and will not rehash.  At times I felt like I should just send her a link and say, "read this."

Anyway, afterwards, ABA was done so we had our daily fight with Flynn over how much dinner he needed to eat.  After dinner we went to a nearby playground and played an elaborate game he made up on the spot with a little girl around his age.  She was awesome and I even got both of them to compromise slightly when their preferred rule-variations conflicted.  He wanted water on the way back and I had none, for which sin I was told I was a "bad daddy."  The boy was exhausted and out of spoons - that was the third park of the day

Bedtime came shortly, with the requisite requests that I "sleep with him until the morning."  Not sure what age those requests stop - I'm hoping before he graduates high school.  He was all sweetness and light, as usual once he's in bed.  Lots of hugs and kisses and requests for more time with me before sleep.  I'm a sucker and usually give in. Obviously.

Perhaps a non-standard Memorial Day, but we have no regrets around here.  Maybe some day we'll be a backyard barbeque kind of family, but we're happy with the alternative we have.


Saturday, May 23, 2015

Message to a Non-Default Spouse

Me, working on my computer and neglecting the children
It has recently come to my attention that not all autism dads are as awesome as I am.

Okay, that needed a sarcasm font. I make as many parenting mistakes as anyone else.  But I'm here, I'm engaged and doing my best. And, unfortunately, from what I hear from many of the autism moms I know, there are a lot of autism dads out there who need to up their game a bit.

So here's my message to those dads, one guy to another.

  • It's not mom's fault.  Real talk: she didn't baby him too much. He doesn't just need more discipline.  Yelling at a kid who is already freaking out is just going to make things worse. This is a neurological disorder, not something you can discipline away. 
  • Read up on it.  Autism is a complicated disorder, potentially affecting almost every aspect of your child's behavior. The more you can learn about autism, the better you will understand the reasons for your child's behavior, allowing you to parent from a place of understanding and compassion, rather than fear and denial.
  • Understand the therapies.  Perhaps the biggest frustration I hear from moms is that dads "aren't on board" with various treatments and therapies. Sometimes it's due to misunderstanding, sometimes a case of denial. There's no excuse: get informed and figure out what you can do to help. Don't just be an obstacle because you're scared. If you have real objections, you owe it to your kid to verbalize them in a non-confrontational way.
  • Confront your prejudice.  Everyone in our society has prejudices. That includes you. For people with kids like ours, getting over our hang-ups about ridiculous societal norms is our entire job. It still annoys me a little when someone stares at my kid for flapping with excitement, but I'm not embarrassed of him. I'm embarrassed for them. Because the "no happy flaps" rule is dumb. We should all be so lucky that we get that excited.
  • Give your spouse a break.  Hahahaha. Just kidding! You can't handle the kid on your own! Oh wait, yes you can. Let her get out of the house on her own every once in a while. If that means screen-time for everyone, that's what it means. The kid will be fine. So will you.
  • Grieve after the kids are asleep.  A lot of parents feel the need to mourn the loss of their "expected" life. Maybe you wanted a kid who would grow up to be a star soccer player, throw a 95 mph heater, or, hell, just play catch with you. I get it. Take all the time you need. But not while they're awake. When they're around, your job is to be an awesome parent, whatever that means to them. If that means you're the dedicated YouTube video finder, awesome. If that means you help build the train tracks, do that. Don't know what to do? Ask mom - I bet she does.
  • Frustration is allowed.  Every parent gets frustrated, both with their child and their partner. One thing I have seen a lot in my own house since the diagnosis is misplaced frustration. The wife or I gets pissed about the kid's behavior, but it gets misdirected at our partner.  If you see yourself doing this - own it.  If you see your spouse doing it, talk about it (gently, and after they've calmed down). The fear and anxiety of a new diagnosis can make anyone extra touchy. If this is a problem, talk about it and figure out strategies that will help everyone.
  • Plan for the worst.  Parenting is a million times better as a team. We all have moments where we are sure we are about to lose it. I strongly suggest that you have a plan in place for when one of you needs to "tag" out of a situation where your emotions are spiraling and the kid is about to suffer the consequences.
  • Communicate communicate communicate.  If I'd just put this first, I wouldn't have had to write the rest of the post.  I know it's hard - I hate talking, too, but you must get on the same page about, at a minimum: 1) general parenting philosophy, 2) discipline, 3) treatments and therapies, and 4) division of non-parenting responsibilities.  
  • Make time for each other. This is hard, but important. Do it. As often, and in as many positions as you can.

If you can do all of this, well, you're a better man than me, certainly.  If you can do most of it, you're probably an awesome autism spouse.  Go forth and help out.  You can do this!

Wednesday, May 20, 2015

Openness and Acceptance

Sometimes I read "Urban Mom" type forums.  There is a special needs section on my local one, which can be interesting.  It can also be utterly horrifying.
"My son will never hear that he has autism from me.  I would never tell his teachers, either, as they would treat him differently."
If someone said this to me directly, I think my response would be something along the lines of, "I'd sure as fuck hope they would!"

This is one aspect of the "I don't want him labeled" parental impulse, which is pretty seriously problematic.  I've written elsewhere about why a diagnosis is helpful, but I just don't understand parents who have a diagnosis for their kids, but won't seek any accommodations as a result. 

Now, to be fair, I was completely in this camp immediately after Flynn's diagnosis, without really understanding why.  At that point, I couldn't imagine disclosing his ASD to his teachers: would they still challenge him?  Would they try to shunt him off to a different classroom?  What if his peers found out?  And what would he think when he learned of his own diagnosis?  Would he hate himself and his differences?

It was all new and unfamiliar, and I had no idea how to navigate these issues.

I had also completely missed the point of getting an autism diagnosis in the first place: to understand the source of your child's non-typical behaviors and to get them any accommodations they need.

Here's what I wish someone would have explained to me:
  •  His teachers already know. Unless this is literally their first year teaching (and sometimes even then), they realize that your kid is different, and they've probably handled his or her particular flavor of difference on multiple occasions.  As an example, the director of special ed at Flynn's first public school worked with him precisely twice before recommending a neuro-psych evaluation. She never said autism to us, but she read the tea leaves pretty quickly and accurately.
  • Your kid will never be challenged if they can't focus.  If the classroom is too loud, the lights are too bright, they need to move but are constantly being told to sit still, or if unexpected transitions are triggering meltdowns, they aren't learning. Without accommodations, typical classrooms can be nightmares for our kids.  Use the diagnosis to get them what they need, so they can learn.  If they are already mainstreamed, you have a say in any change of placement the school might propose.  But if that is honestly your primary fear, ask yourself why a special ed classroom is so frightening to you.  Would you consider the change if you knew he or she would learn the most there?  For some kids it will be the best placement, and that's okay.
  • Your child's peers already know (or are starting to understand) that your kid is different. Denying that fact won't help her make friends, and if you don't get your kid the social skills help she deserves, she'll be floundering on her own.  I don't think she'll thank you for that.
  • Finally, you should tell your kids they have autism.  Acceptance starts at home, and if you're so scared of their diagnosis that you can't even share it with them, you haven't really come to terms with it yourself.  If you don't confront and conquer your own shame and fear, you can't help but transfer it to your kids. 
  • There are plenty of recently-diagnosed adults who are excited to learn the reason why they felt as though they never fit in.  In the article above, Lydia (who I know a tiny, tiny bit through the interwebs - before she was famous!), makes a really great point about the power of a diagnosis.  "I never had cause to think I was any different than anyone else, and so with every new failure, I had to conclude I was at fault. . . . When I got my diagnosis, I started to let go of my need to ‘just be NORMAL!’”
Underlying all of these objections is fear.  Fear that your kid won't be normal, won't fit in, won't succeed.  Once you admit that your kid is different and accept that it's fine, these concerns start to fade. 

One of the great things I've seen developing over the past 10 or 15 years in this country, is the idea that everyone should just be able to be themselves.  The progress we have seen in the gay rights movement has so many positive corollaries, and the parallels with the neurodiversity movement are obvious.  We owe it to our kids to be accepting of their diagnosis and to push society towards accepting their differences.  Every kid on the spectrum has value, and advocating for them means helping them own their diagnosis and their needs.

Tuesday, May 19, 2015

Choosing a Path

***This post is cross posted as a guest-blog at Deciphering Morgan.  Thanks for letting me hang out at your spot, Jessi.***


Flynn, drinking, while sitting on a rock this weekend

 It's really f*cking hard to admit that your kid is different.

Ask any parent what they want for their kid and, after "healthy," you will hear some variation of "I want her to fit in" or "I hope she has an easy path."

I'm still trying to accept that Flynn's path will probably not be easy.

Here in autismland, one of our biggest struggles is how to get through to parents with kids who are struggling, but haven't yet been diagnosed with anything.  Parents who are concerned, but can't put their finger on why.  Parents who look at our kids and see, to their horror, their own kid reflected back. 

It's hard to watch your kid struggle.

I've watched my boy struggle with a lot of things, things I sometimes interpreted as failures.  Often, his struggles come despite my best efforts to support him. It never seems to get any easier to watch.  But before we knew his diagnosis, it was about a hundred times harder, because two key questions remained unanswered.  I didn't know why, and I didn't know how to help. 

I think that good parents often have a (somewhat flexible) vision in their mind of who their kids will be when they grow up.  And by that, I mean not what they grow up to "be" (fireman, doctor, lawyer, etc.), but rather which values they will demonstrate with their actions.  For example, you might attempt to instill through your parenting the expectation that your children demonstrate generosity, kindness, compassion, critical thinking, intelligence, independence, resilience in the face of failure, a sense of humor, etc.

Most parents, hopefully, will understand that success in instilling these values will be largely dependent on their child's personality, meaning they will fail to a greater or lesser degree.  And they also understand that a small child will only be able to demonstrate a few of these.

But even with that knowledge, it's hard to fail as badly as I have failed at instilling certain core values in your kid, without questioning your basic competence as a parent.  One particular example of my failures is the neurotypical version of generosity.  Sharing is hard for most kids at one point or another, but when Flynn was two and three. . . .  It just didn't happen.

When he had a vision of who should touch his toys or how they should be played with, there was no changing it.  He just didn't share toys willingly, for the most part.  Even now, at nearly five, we're still working on strategies to make it more acceptable to him.

This struggle should have been one of our first indicators that we were on a different path from most parents.  There were others we should have spotted, perhaps, but Flynn was our first child.  You're never sure what to expect with a first child, so some of the other quirks were easy to write off (with the encouragement of his pediatrician) as variations on "typical" child development.  He pointed to a couple things and waved a few times, so he's got those milestones down, right?  Never mind that he did it and then stopped for a good year.  As in regressed.  "He's fine," she told us.

So when he wouldn't share anything, ever, it seemed like he was just stubborn.  And kind of a jerk, if I'm being honest.  At two I made excuses for him, but by three I was getting frustrated.  That frustration made me highly conscious of other parents' judgements, made me more embarrassed, and more likely to be harsh with Flynn.  I can't even count the number of parties we had to leave during his third year because some other kid approached him and wanted to use "his" toy (which he had found 5 minutes before). It was mortifying.

All of this just made me feel like a complete failure as a parent, despite doing everything "right," according to the experts.

This is just one example, but the years before he was diagnosed were extremely challenging, as a result of our failure to understand his differences.  So what changed afterwards?  Well, we knew to expect social difficulties, for one.  Shortly after he was diagnosed, a friend said to me, "Wow, you've really gotten good at advocating for him." Things that would have been meltdowns were now chances for learning and teaching.

I finally understood the reasons for his behavior.  Being more of a hard-ass wasn't going to make him suddenly understand the point of sharing.  He needed patience and instruction.  In fact, if there's one thing that being an autism dad has definitively taught me, it's that the hard-ass impulse we all get sometimes is almost always wrong during the early childhood years.

I'm pretty sure that, eventually, Flynn will be a generous and kind adult.  But we're taking a different path to get there. A path with explicit social skills training, lots of rewards for behavior we like. It is a path which takes his reality into account.  No amount of yelling / forced sharing (which, in his mind is just theft) would have taught him anything but resentment.

And you can extrapolate this to most other social skills, and a lot of other settings. For his first year at school, we heard all about his difficulties, but nothing answered the critical question: why?  Why was he aggressive with other kids, seemingly without provocation?  Why was he melting down during classroom transitions.  Why was he so eminently distractable?  Why, despite a year in daycare and a year in school, did he still respond to school drop-offs as though we would never return?

If your kid is having problems, you owe it to them to find out why.  Will you like the answer?  Maybe not. Their path may not be easy.  But a label changes nothing, and a diagnosis isn't a destiny.  But an accurate diagnosis tells you the cause for their behavior, and once you know that, you can start answering your real question:

What the hell do I do with this kid?  How can I help him?

When you know, you can start preparing a path.  If it's not easy, well, at least it will be a path.

Monday, May 18, 2015

Contentment

The Spectral Zone's photo. 

Yesterday, we had an interminable (to me) morning of shopping, after a longer than usual visit to IHOP. This is afterwards, digging in the dirt. I was finally content, as was Flynn.

Friday, May 8, 2015

Wednesday, May 6, 2015

Protest and Privilege

You should be aware that I have all of the privilege.

All of it.  You see, I'm a white male lawyer who works in a position of authority for a bank.

That's what we call a trump card, ladies and gentlemen.

Now that my credentials are established, allow me to speak for a minute on the issue of the Black Lives Matter protests.

I've seen a LOT of Facebook posts and I've read a lot of commentary (and let's be honest, fellow white people, so have you) painting everyone protesting in Baltimore, Ferguson, and elsewhere as looters, rioters, and criminals.  Even the phrase "Black Lives Matter" gets people up in arms.  "All Lives Matter," is the rejoinder I keep hearing from the white folks I know who are likely to be bothered by this type of thing.

Allow me analogize for a second.

I write a lot about autism.  Because, you know, my kid has autism.  A lot of my friends and a pretty good chunk of my family are on the spectrum.  So autism is what I know, and I can tell you all about my experience with it.  It's also a borderline obsessive interest of mine, so I read about it a lot, and I do my best to gather a wide variety of experiences and opinions from all different types of sources.  If I were to tell you something about the experiences common to the autistic community, you could be fairly confident that I know what I'm talking about.

Education is a big issue for the autistic community.  For autism parents, it's probably the primary issue. 

Now, let's say I wanted to advocate for educational accommodations for my kid and other kids on the spectrum, for example an autism-specific classroom in my local public school.  I might come up with a slogan to get my message across quickly and clearly.

I might come up with something like, "Autistic Kids Matter."

Now let's say you have neuro-typical kids in the same school as my kid.  If you see me on the street and I give you a flyer that says "Autistic Kids Matter," and I ask you to support my efforts to get the school board to set up an autism classroom, would you respond by saying, "What the hell man?!? My kid matters too!"

I hope not.

Because you would know that my flyer wasn't about you.

You would, perhaps, realize that I have had very different experiences than you in getting my kid educated.

You might realize that, even though your child's grammar is maybe not quite where you would like it to be, that's on a different level from my child's inability to walk through the front door without melting all the way down into a puddle on the pavement.  Perhaps you've even seen him do it?

Maybe you think the school has serious issues: many schools do, after all. Would you want to fight me about whose kids have it worse? Or would it perhaps be better to try to work together?  Maybe my list of issues could join with yours and strengthen it.  Let's get all the money and do all the things.

Hopefully you see where I'm going with this.  Walk with me there. 

It's true that all lives matter, just as it's true that every kid deserves an education that suits them. But calling attention to special cases and differential treatment can highlight true injustices. If it offends you, maybe you should think about why that is.

Thursday, April 30, 2015

Blessings

I've been reading internet comment sections again.  I know . . . I know.  I've been trying to stop, but it's so hard.

Sometimes in comment sections of stories on autism, you run into a particularly . . . righteous type of individual.

"Your child is a blessing from God," they say.  "Special parents get special children."
"Please stfu, you're being insulting" you say.
 "How could that possibly be insulting?" they reply.  "I just called them a blessing.  My autistic child is a blessing, too.  They're special and so is your child."

And on it goes, until the internet explodes all over their special faces (hopefully).

Don't be this commenter, well intentioned as they may be.

Why is this insulting?  Let me count the ways:
  • You're setting my kid apart from everyone else.  I get that you're trying to do it in a nice way, but he gets enough of that. Let him be himself without calling it out.
  • Autism is part of who my son is, but we try not to let it define him.  He's not a special angel, he's a kid, who does normal kid things most of the time.
  • You're lumping all special needs kids together.  Separately.  Let's try for inclusion.
  • It's patronizing as hell (that's when you talk down to someone).  I stole this from a meme because it is perfect (sorry for the lack of attribution, I have no idea who the source is).
  • Special needs parents don't need pedestals, we need support.  If you call us heroes, you assume super powers.  I'm an ordinary person.  Assume I can tolerate what you could tolerate.
Just a friendly public service announcement.

Also, don't say, "this kid just has asperger's, it's not a big deal."  I will come to your house.  And my kid will teach you a lesson.

Thursday, April 23, 2015

Fears

I'm a middle aged white guy who wears a suit (or some close approximation thereof) to work most days, so I don't worry much about cops.  Well, I didn't.

Then I had a kid who is the worst at respecting authority.  If you tell him what to do and you sound angry, he's probably going to hit you.  Which is a problem in general, but is amplified with police officers.

I have already started trying to work with him on how to act with police officers.  So far, I have been extremely unsuccessful. I fear for his future.

Keep in mind that he is four.  If you think this is too young to worry about these things, please read this article about use of police for discipline in our kids' schools. Six and seven year-old kids get arrested for meltdowns in this country, and students with disabilities are arrested at about twice the rate as neuro-typical students.
Diagnosed as autistic, Kayleb was being scolded for misbehavior one day and kicked a trash can at Linkhorne Middle School in Lynchburg, Virginia, in the Blue Ridge Mountains. A police officer assigned to the school witnessed the tantrum, and filed a disorderly conduct charge against the sixth grader in juvenile court.

This is simply the criminalization of autism, and that first interaction led to a spiral of negative consequences for Kayleb.  In a separate, but related, incident, the officer grabbed 11 year old Kayleb, who responded by trying to push the adult officer away.  Kayleb was charged with felony Assault on a Police Officer for his attempts to protect himself.

We're a few years away from 11, but I know my kid.  There is no doubt in my mind that he would respond just as Kayleb did in that situation.

This is far from the first article to strike fear in the hearts of autism parents. Many of my friends who read the story of Neli Latson earlier this year saw parallels between his reaction to a police officer's physical attempt to impose his authority and their own children's behavioral patterns.  Many of us fear even a single interaction between our children and law enforcement, because children or young adults who, constitutionally, cannot bend to authority, cannot be subtle or control their emotions, are likely to fall into an escalating cycle of violent responses to aggressive actions.

Rule number one for interacting with my boy: don't put your hands on him when he is upset. He will hand you your ass.  Or bite you on it.

There are many autism parents who will not call the police despite being in physical danger. I read an article last year about a mom who built a safe-room for herself for use during meltdowns.  She refused to call police because she was (justifiably) afraid her son would be shot, but needed a place to go to ensure her own safety.


If the system is broken, you have two options:  try to fix the system we have or build a different system.

I don't think I will ever be comfortable with my son or a child with similar neurology to him interacting with an armed police officer.  A new system is the approach I would take if I could.  In an ideal world, I would want an alternative emergency system for parents or caretakers facing a mental health crisis.  I would want an unarmed response.  I would want social workers and crisis counselors, not police officers.  I would want automatic diversions to crisis treatment centers for folks with existing mental health diagnoses.

In other words, I want my son to be given reasonable accommodations for his disability. 

Is that really too much to ask?

Wednesday, April 22, 2015

Experts

Not all "experts" on autism are good people.

Not all autism service providers are good people.

I hope this is obvious, but if you're not sure if a therapy or treatment for your autistic child (or, hell, your NT child) is appropriate, trust your instincts.

If you are trying to get help for your child and the therapists refuse to treat your child like a human being with normal, developmentally appropriate needs, speak up. If they won't accept boundaries you set, end the relationship. 

Your kids are kids.  Make sure they get a childhood.


Tuesday, April 21, 2015

Bestest

Flynn's teacher sends out daily email reports, in which two kids in the class narrate what happened that day.  It's a pretty fun read, b/c the kids are 4-5 and super silly. 

Today's report had this gem:
"At movement I did everything that Flynn did because Flynn is my BEST BESTEST BEESSTT friend!"

Day.  Made. 

Monday, April 13, 2015

Not a bad kid

"You can't do that to my son."

"Why?  Is he a bad kid?"

"No, of course not. He's just really sensitive to touch. That probably hurt. That's why he kicked you."

The other day I was at a birthday party with Flynn - his friend was turning 5. 

Side note - on the way there, Flynn told me his friend was turning 6, because they had already had a party at school earlier in the week for when he had turned 5.  Good logic, but a poor grasp of how long a year lasts.

The birthday boy's family was large and gregarious: lots of demonstrative affection.  The bigger kids were constantly hugging, carrying, and rough-housing with their younger siblings and cousins. 

It was nice to see, but completely foreign to my familial culture, which is . . . I want to say . . . a bit puritanical?  It was also scary, because of how Flynn has always reacted to unsolicited and unexpected touch.  Sure enough, near the end of the party, the kids lined up to do something fun and Flynn was behind an older cousin of the birthday boy. The boy was excited, turned around and grabbed Flynn hard by the shoulders, jostled him, and got a kick in the shins for his trouble.  Would have been a lot more serious if I hadn't intervened immediately.

We get a lot of tour groups here in the center of DC. I see these 10 year old boys horsing around, roughhousing.  I don't know if he's ever going to be able to handle that.  If he knows the kid really well, he might tolerate it.  But not right now.

I don't know how he's going to survive middle school.

Saturday, April 11, 2015

Imagination

"He can't have autism, he has an imagination.  Kids with autism don't play creatively." We got this quite a bit when we were thinking about whether Flynn could potentially have autism.

For a lot of reasons, this is silly. One of the stereotypical autistic "traits" is increased associational ability, though your mileage will vary, of course. Imagination oftentimes appears as simple as association of one event with another, so a car is like a Gup (a boat on the Octonauts - keep up, people), and if we are going really fast down the road, it's like zooming through the water, and suddenly I hear from the back seat that "We're in the Gup X, and we're zooming down deep, deep into the midnight zone!!!"  Wow, he's so creative!

Scripting can be creative as well.  If Flynn says something from a show in a new context, oftentimes he is seeing an association I've missed, as when he spots an emotional or situational similarity between that situation and his current reality.  But sometimes he's using a script to express something unique, for example creative use of a funny script to get a laugh in a serious situation.

Flynn also likes to create unique characters, similar to familiar ones.  So he makes up sea creatures that are, for example, based on ones he sees in the Octonauts, but bigger and scary instead of funny.

Creation of entirely new situations or characters I haven't seen much of, but I have trouble doing that, and I'm not . . . a four year old.

Wednesday, April 8, 2015

Unfair

Just this morning, reflecting on how badly Flynn took my 2 day absence, I was thinking about the fact that I can never die. His daddy is his rock; his source of stability. It's nothing that I've done, it's just what he decided from a very early age. I am the person he needs.

I know that a lot of autism parents feel this way.

This afternoon I learned that my friend Jim, who is a superstar in the autism community, lost his wife Leslie to breast cancer.

I'm so sad for Jim, and I hurt for his two girls. Life can be uniquely unfair.

Getting Real

One of my favorite internet expressions used to be "that makes me stabby," as in, "when people tell me my son doesn't look like he has autism, it makes me stabby."  As in, "I want to stab a fork through their eye and into their fucking brain."  Boom.

Funny, visual, totally divorced from reality, it's the internet expression hat trick. I'd never stab anyone! Isn't that a funny thing to say?!?!  Me! Talking about how I want to stab someone!?!  Me! 

Then my kid actually stabbed someone. That was an exciting phone call from the principal, let me tell you.

"Hello, sir.  I'm afraid we're going to have to suspend your son, Flynn.  He stabbed someone at school today."

What.

The.

Actual.

Fuck?

My blood pressure climbed about 40 points in a second.  Also, I may have shouted at the principle.  Quite a bit.  Things like, "you realize that he's a four year old!?"  And, once I learned the kid he stabbed was "playing zombies" and pretending to eat peoples' brains, things like, "you know he has autism, right?" and "You are punishing him for having a disability!" And, "He's extremely literal. He probably didn't know the boy was pretending."

To be clear about a few things, I felt very bad for the other kid and I am not blaming him at all for doing a normal thing that kids do. I was mad at the school, which was on notice that Flynn needed additional supervision at all times, failed to provide him with that supervision, and then suspended him when predictable social misunderstandings led to a predictable outburst.

The principal, shockingly, understood why I was so upset.  His son is autistic too.  But he suspended Flynn anyway.  To "protect the school."  Or something.  Later, when explaining why the suspension was overturned (because you'd best believe I fought like hell against that bullshit) he said that the electronic record keeping system required that he enter a suspension when recording the event.  That makes me . . . well . . . not stabby, but . . something.

Wednesday, April 1, 2015

Getting to Acceptance

I've already talked quite a lot about why we're not promoting autism "awareness" this month (as MammaFry says, we're already pretty aware).  We're all about that acceptance around here, and acceptance starts at home. Everyone's got their differences, and they're all okay.

But that's not to say that getting to acceptance (even self-acceptance) is always easy. As I assume a lot of the people reading this know, there's an entire sub-genre of adult autistic writing devoted to the awkward childhood play date.  For example, the story at the beginning of Look me in the Eye, where J.E. Robinson hits the other boy in his sandbox for playing incorrectly and then pets a little girl like a dog to try to make friends with her.  M. Kelter has a few good examples from his childhood, as well.

Alienation. Loneliness. Rejection. This is the reality for a lot of our kids early in life.  As M. describes it:
I lacked body language and was not picking up on the nuances of non-verbal cues. I was blind, in other words, to a large portion of the shared context that I experienced with other kids.  Needing people, interested in others, I walked- repeatedly- into the buzz saw of rejection.

My self-confidence eroded. I became quiet, withdrawn. And afraid.

Sounds pretty familiar.  My boy has spent most of his life being either afraid of his peers or making them afraid of him. His social challenges have caused depressive behaviors, a negative self-image, and worsened his anxiety.  I can't count the number of times he's told me that he's bad, he's evil, he's naughty, usually after getting overwhelmed in a social situation and either hitting other kids or otherwise struggling. He's called himself stupid on multiple occasions.

He's four.

He already knows he's different.

Let's not make it worse by further stigmatizing his autism in the name of awareness.

Let's make it better.

So what do I try to do to support him? First, I use what I know about his differences to help him connect with others. I also try not to set him up to fail.  I know that he hates sharing and is overwhelmed by busy and unstructured environments. Other kids play wrong: he's not likely to follow other children in child-directed group play. So I try not to put him in environments that force him to do these things. When he has to do these things, I try to get (or give) him the support he needs to be as successful as he can be (which usually amounts to adult intervention and mediation).

He has strong interests and will often follow along adult-directed group play.  Designing play that is cooperative rather than competitive is vital. If I can incorporate his love for the Octonauts, space, or sea creatures, total win.

I also try to be very explicit about social rules, and going forward I hope to have lots of detailed conversations about how to meet his social goals. This hasn't really been possible yet (I mean, the kid is only 4), and he may or may not be able to express what he wants socially.  But if he is, I'll be there to help him plan things out.

Finally, I have been trying to get the kid a positive outlook. Part of that has been changing my parenting style to focus on positive praise, rewards, and points of agreement. This has dramatically decreased conflict and tension in our house, and Flynn's outlook on life has improved as a result.

The other part has been to be totally upfront about his diagnosis. He already knows he's different from other kids - a parent will never successfully hide that fact from their kid. So instead, we're embracing it, making it a point of pride. He has an amazing ability to spot details I would never notice. He sees patterns I would miss. He has an incredible memory. I talk with him about the stuff that he's good at as often as I can, and if it's autism related, we own that.

Slowly but surely, we're getting to acceptance.

Monday, March 30, 2015

Nice Screaming!

Parenting offers new and exciting adventures every day. Yesterday I said something I never would have believed possible in my fevered, pre-child, parenting delusions: "Good job! You yelled at the baby!"

Flynn has a one year old brother, Calvin. Quite frequently, Calvin gets overexcited and presents Flynn with genuinely challenging behaviors, grabbing, pinching, hitting, the patented toddler two-hand-slap. Flynn has always had extreme tactile defensiveness and frequently has lashed out in response to even incidental contact from other children.

With his brother, Flynn has gotten so confused. He loves the baby! So much love! So many hugs and kisses! But he is scared of the baby, too. He is scared the baby will hurt him, scared of hurting the baby, scared the baby will hurt himself.

True stories:
Baby crawls rapidly toward Flynn's room.  Flynn pushes baby's head down into the floor.  Baby screams.  "What are you doing?"  "I didn't want the baby to go in my room!" "Why not?" "There might be choking hazards on the floor!"

Baby toddles happily toward Flynn, babbling excitedly.  Flynn pushes baby over. "Why did you do that?" "I was afraid he was going to bite me."

Actual physical contact from the baby . . . escalated quickly. Let's just say the boy knows how to retaliate.

To say that it has taken some adjusting for him to tolerate the baby would be to significantly understate how hard he is working.

Yesterday, after some prompting from me, Flynn was doing a puzzle with his brother - you know the kind - big heavy wooden blocks made just for a baby.  This one, as a matter of fact:


Calvin picked up the triangle piece tried to put it in place, failed, then watched Flynn lean over and put the oval in place. Thunk! Calvin smacked Flynn right on the forehead with the corner of the heavy wooden triangle, where Flynn already had a bruise.  I'm sure it hurt like hell.

You guys! Flynn didn't hit back! Instead he looked right at the baby and screamed. The baby cried. Flynn cried. I was so proud of him. "Good job, buddy.  Nice screaming."

Baby steps.

Friday, March 27, 2015

Empathy

Perhaps the most common widespread misconception about autistic people is that they have no empathy.  This is, for lack of a harsher expression, complete and utter horseshit.

Two nights ago, I read the book Madeline to Flynn.  You know the one - Madeline is awesome, gets sick, gets her appendix taken out, gets toys at the hospital, shows off her scar, and makes all the girls jealous.  "What's a scar?" Flynn asked.

I showed him several of mine.

He looked at the one under my eye and asked how I got it.

"You know that daddy used to do kung fu? I got punched in the eye during a training session by accident. It really hurt. I got a black eye and a big cut under my eye. See the scar right here?"

Cue the ugly cry as he traced the scar under my eye with his finger.

"What's wrong, buddy?  I'm okay now."

"I love you in my heart, daddy and I don't want you to hurt."

So. . . that's the definition of empathy. "The ability to understand and share the feelings of another."

You hurt so I feel your pain.

Now, sometimes his expression of empathy doesn't happen in real time, or he may express his understanding in a manner that defies your expectations. Several times, before his diagnosis, I got very angry with him for laughing when he was being punished. This is an anecdotally common response among autistics. I did not understand at the time that his laughter in these moments was an expression of his feeling of panic and overwhelm. I now recognize that he has an extreme sensitivity to my emotions, and that it is powerfully overwhelming for him to know that I am angry with him.

His processing difficulties may also get in the way, as when he is unable to focus on others, or too distracted by a stimulus to even notice you.  Frequently, for example, when the baby cries, he appears to suffer physical pain due to the noise, which, for him, overrides his ability to concentrate on anything else.  There may also be times where he does not feel or understand (or give in to?) societal pressure to produce an external response where we might expect one.

Anyway, the next time someone says autistic people don't feel empathy, feel free to punch them in the eye. #sarcasmfont

Thursday, March 26, 2015

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?

Wednesday, March 25, 2015

Tuesday, March 24, 2015

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, when parents of autistic kids are hurt, so are the 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.