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.

Monday, March 23, 2015

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. 

Friday, March 20, 2015

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

Wednesday, March 18, 2015

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.

Friday, March 13, 2015

Tragedy

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

Thursday, March 12, 2015

Stupid

This morning, I had to ask my son's teacher if someone was calling him stupid at school.  It's not a word we use in our house, for obvious reasons, but yesterday, he came home asking what stupid meant and later, after we had deflected the question, he yelled "why are you so stupid!?" during a miniature meltdown that I think was brought on by pure exhaustion. (Thanks, daylight savings time!)

His teacher's reaction made it hit home to me that what I was really asking was whether he was being bullied. She reassured me that, first, he is not perceived as stupid by his classmates (she said he is the student who has answers to all the questions she asks) and, second, that this was not something she had heard anyone in the class say at all, and that his aide would have overheard it had someone said it to him. His aide said that maybe he had overheard older kids on the playground.

I was reassured that he probably hadn't been called stupid at school, but also slightly shaken by the reality that further conversations about bullying are probably inevitable.  Anyone who is even a little different from the norm makes for an easy target, so.... that sucks.  Fun times ahead. 

Wednesday, March 11, 2015

Tuesday, March 10, 2015

Transitions

In an earlier post, I talked a little about the prevalence of anxiety in my family as a whole, as well as its specific manifestation in my son.  A lot of the time, even a transition to something that should be easy (We get to go home, yay!) is hard. My parents tell an amusing story about my brother, crying in the back seat of our car when he was about 5, repeating through his sobs, "I don't want to go to my lovely, lovely home."  My son is a lot like that. One time we went to my parents' condo and played for most of the day because of a snow day.  He eventually got bored of everything but also got upset with me for trying to get him home.  He started doing one of his favorite stims, running from one end of the house and bumping into me, which I usually try to stop before he gets out of control.  This time I opted for tickling as my method of intervention.  He loved it, thought it was hilarious, and laughed so hard that he peed himself.

After that, it was a while before we had to go home.  I'd like to say I learned my lesson, but I did it again a week later.  That time he peed on me, too. Bath time for everyone! I'm awesome at this autism parenting thing.

Friday, March 6, 2015

Thursday, March 5, 2015

Snow Days

For the love of G-d, open the schools.  Some of us have work to do.  Also, please stop snowing, it is March.  That is all, thank you.

Wednesday, March 4, 2015

Anxiety

My family is an anxious one.  When my brother was about 10, his knees were hurting so badly he had to go see a specialist in LA (we lived in a small town in central California at the time).  I remember being confused at my parents' response when they got back.  I asked what was wrong, and they sort of . . . brushed it off.  Later, I learned from my grandfather that he had been so tense that his knees were literally being pulled apart by the tension in his leg muscles.  I don't think my brother actually got any treatment, though, other than maybe being told to try to relax.

Which is basically all you need to know about my family's attitude toward anxiety.  My brother, my wife, my mother, my uncle, and my grandfather all are (or were) extremely anxious.  The only one I've ever heard admit that it is a problem is my uncle, who is probably the most relaxed of the bunch. My mother, who is among the most anxious people I've ever met, denies that she even has anxiety. She just plans out every aspect of every potential activity for fun, I guess.

So I guess there's probably a reason why my son is extremely anxious, too.  Plus, he's on the spectrum, which. . . well, anecdotally, anxiety is very common for people on the spectrum.  One resource I found online appeared to place co-morbid disorders in the anxiety umbrella at upwards of 60% of autistic children. So chicken or egg?

Anyway, it's probably not uncommon for autism moms and dads to be where I was last Tuesday (give or take), chasing my boy as he bolted back to the house while I was trying to get him in the car for school. He does it at school, too - he runs for his "safe" places (thankfully his classroom, so far) when he's really stressed out, most often during transitions. 

Every morning is a new struggle.  I feel like a parenting ninja every time I drop him off at school. Today he ran upstairs as we were leaving, saying he had to go to the bathroom.  As I tried to cajole him off the toilet, his real motive came out.  "I'm going to be pooping until after school."

Deception is, thankfully, not his strong suit.

"I'm going to stay home with the babies today, daddy." 

No. No, you are not.

But I understand why you want to.  Change is scary as hell.

Tuesday, March 3, 2015

D-Day

 My son, let's call him Flynn, has always been a ball of energy, full of joy, occasionally full of pain.  He feels everything with his entire being, with highs in the clouds and lows. . . well.  The lows were bad.  Are bad.

From about 18 months we wondered if there was something a bit different about him.  I was on a trip to Colorado, visiting family, when my wife called me.  She was upset.  "Flynn bit Carlo this morning. It was bad."  I told my dad, expecting him to tell me that sometimes kids bite.  "Well, they probably won't want their son to play with him anymore" he responded.  Thanks, dad.  Very helpful.

But Flynn's problems with peers were just starting.  By two, it was evident that he was behind.  He didn't share toys, he sometimes attacked or growled at kids when they approached him, and he appeared to prefer playing alone. We took him to playgroups and parties frequently, and had to leave with him melting down . . . a lot.  Maybe most of the time? We were beyond confused, as he was meeting all his speech milestones and with adults he was loving and outgoing. His doctors assured us he was fine.  Flynn was strongly attached to his mom and I, showing extreme separation anxiety whenever one of us left. At drop off for daycare we had to pry him off of us, as though he was sure we would never return.

As first time parents, it was so hard to know what was "typical," so we compared him to his peers. The little girls in these groups were clearly more relaxed and social than Flynn, but I always watched the other boys, secretly relieved when one of them had to leave early. "See, he's like the rest of them," I thought.  And he continued to be his super-engaged, fun loving self at home.  He was so happy.  Joyful.

At three we had Flynn evaluated by an early intervention program due to his struggles at daycare, and he was given a diagnosis of developmental delay.  "What the fuck does that even mean?" I thought.  Something was going on, but that was not an answer.  He had no speech delays or intellectual delays and had always been so loving and attached to us that I scoffed at the word autism.  But by that point, it was clear he had sensory challenges.  In crowds he quickly became overwhelmed and he covered his ears when met with loud noises.  "Stop it!" he would yell when someone sang along with the music in the car. And his time at school did not get any easier.  Conflicts with peers continued. Changes to his home routine led to extreme meltdowns - hitting, biting, scratching.  At an IEP meeting, a school official suggested we seek further evaluations.  We scheduled an assessment at the local Children's hospital, six months out.

And that was how I found myself crying in a small office with my wife and a doctor, while a grad student played with my kid, keeping him oblivious to my internal struggles.

Dads don't usually admit that they're the crying type, but I'm not a "typical" dad. Like my boy, I feel all the feelings, so if something hits me hard, happy or sad, I'm probably going to cry about it. So when my son was diagnosed with autism . . . waterworks.

"What do you think this means?" asked the psychologist.

Fuck if I know, I think.  That he's broken?  "It means he has limitations."

"This boy, if things go according to my plans for him, is capable of graduating from MIT or Georgetown.  In his last evaluation he scored in the average range for intelligence. I think this seriously underestimates him. You should assume that he is capable of anything."

Holy shit.  More tears.  Tell me my boy has potential - see what happens.

Grasping for understanding, I protest, "But . . . Autism?  He loves people.  He's so high-functioning."

"He's high-functioning sometimes. Not when he's melting down and attacking you."

Point taken.

We left before Flynn was ready, so he started hitting me, as was his typical response at the time.  The doctor nodded knowingly and suggested some strategies to deal with meltdowns, for which I am grateful to this day.

For the parents who recently went through their own "D-Day" (i.e. got a diagnosis for their kids), allow me to make a few points.

  1. First, the obvious: this shit is hard to deal with. No one wants to hear their kid will have challenges. It's normal to struggle to come to grips with a diagnosis and your own feelings about it. You're not a robot - shit feels like it just changed, and not for the better. Let it out, it's okay.
  2. Your child has not changed - he or she is still an awesome kid.  Read it again.  Your child is the same and your love for them is the same.  Understand it.  Autistic kids are awesome. Especially yours. 
  3. An accurate diagnosis means that you have the tools to understand your child in a way that you never have before.  Exploit this insight to the fullest extent you can.  Autism is not a singular condition - it's an enormous spectrum.  Your job is to figure out where your kid's particular needs are and adapt therapies (which are now more available to you) to that spot.  I have friends whose kids are non-verbal, others whose kids speak primarily with scripting or echolalia.  Meanwhile, I recently had a (woefully ignorant) speech therapist tell me that Flynn's expressive language skills are too good for him to have autism. Same spectrum, different kids, different needs.  It's the same story with sensory issues - find your child's primary sensitivities and accommodate them as best you can.  
  4. Don't wallow.  People who are railing against the epidemic of autism (newsflash: wider diagnostic criteria + greater awareness = more diagnosed cases) or putting their efforts into finding a "cure" aren't spending their energy on the most important thing: connecting with their kid.  There are a million ways to connect with and appreciate an autistic kid.  If she likes scripting Spongebob, script right back at her and watch her smile. If he likes trains, get the boy to some train shows.  Find the joy and go there. 
  5. Find the people who can help you deal.  I guarantee there's a group for you online.  If you like exploring natural calming remedies with your child, there's a group for you (just keep your lavender the fuck away from me, you hippie).  If you like saying fuck a lot and drinking wine, there's a group for you (actually, fuck off, that group is mine).

Last, but not least: chill.  You can do this.  You'll be fine, but more importantly, so will your kid.