Sunday, December 27, 2015

The highs were so high, and the lows were so very low

Ryan loves Christmas. (Exhibit A, Exhibit B, Exhibit C, Exhibit D)

Ryan loves completion. (Exhibit E, Exhibit F)

So it shouldn't be too surprising that despite our repeated statement that Santa brings just one small gift per child, Ryan freaked out that he did not receive all six items he had included in his letter to Santa Claus.

To an outside observer it probably looked like Ryan was being a spoiled brat (I actually started off by giving him a long, harsh lecture about gratitude and appreciation and how damn lucky he is), but we quickly realized the problem was that he had written a list of six things but could only cross one off. It was somewhat of a relief when he discovered that others in the family had given him two other items from the list, but it took us a long time to talk him down from this meltdown. We eventually agreed that he could save up his own money and complete the list himself sometime.

So, that was the first half-hour of Christmas morning.

------

Then Ryan realized he had been so excited to go to bed last night (cuz Santa only comes when you're asleep) that he had neglected to leave out cookies and milk for Santa and the reindeer. He was beside himself with grief on this. We quickly found a shipping box, filled it with gingerbread and a juice box, and addressed it to the North Pole. Since there's no mail pick-up on Christmas day, I put the box in my car and assured Ryan I would bring it to the post office in the morning.

-----

After these crises, Christmas was lovely. There were even moments that highlighted Ryan's tremendous progress. This year he chose to spend his Chanukah money to buy us presents, and they were reasonably thoughtful (he gave me a delightfully soft throw blanket, because he knows how much I enjoy napping on the couch). At lunch he actually ate what everyone else was eating - new food! - and requested to taste new foods it hadn't occurred to me to attempt to serve him. After deciding he didn't like these foods, he allowed them to stay on his plate; normally he would insist on scraping the offending items into the trash so he wouldn't have to look at them.

And the best thing about Christmas? After a week of saying he didn't know if he wanted to, Ryan went home with his grandparents for a two-night sleepover. It was a Christmas miracle!

Monday, December 14, 2015

Dear Survivors: How can we help you?

Left: Ryan on 12/13/2012. Right: Dylan Hockley.
Dylan could have been my baby.

Dylan Hockley was an autistic 6-year-old, navigating first grade in Newtown CT with the help of his one-on-one special ed teacher. When the gunman started firing at the 6- and 7-year-olds in the class, Dylan's para wrapped her own body around him to shield him from the bullets. They died holding each other.

Half an hour away, my baby sat in his second grade classroom working one-on-one with Mrs. Wilson. After an uneventful day at school, he said goodbye to Mrs. Wilson and came home on the short bus.

He didn't understand why I hugged him so tightly. He told me to let go of him; I didn't.

This morning my baby got on the short bus to go to school, where he is now sitting in his fifth grade classroom working one-on-one with Mrs. Wilson. And most likely at the end of the day he will say goodbye to Mrs. Wilson and come home on the short bus.

But we all know there's always a possibility he won't. Or that he will come home and I will not be here to meet him because I was going about my life and some disturbed individual decided to do something deranged.

His school runs Code Drills, the modern equivalent of Duck and Cover Drills, so the children and their teachers can practice hiding from an "active shooter situation." Americans can purchase bulletproof backpacks, to shield their children from the seemingly-inevitable day they will have to face a crazed gunman. As The Onion said so eloquently, fuck everything.  I don't want to live in a country where we expect kids to be shot in their schools.

The collective horror of all of these incidents is terrible enough, but to me what's worse is the thousands of individual lives that are changed forever the instant the first shot is fired - the instant in which they become survivors.

In addition to the usual debates about gun control and the mental health of the murderers, I'd like to take a moment to think about what we can do to support the survivors of these traumatizing events our country seems incapable of preventing.

I have a friend who survived the Simon's Rock massacre on 12/14/1992. Twenty three years later, that day still colors everything in her life. Everything. She wrote a book about her experience as a survivor - memory loss, panic attacks, all the what-ifs - that I think should be required reading for anyone before they're allowed to open their mouths about mass murders.

Every child at a school where one of these insane shootings takes place, every teacher, every first responder, each of them will need a lifetime to process the grizzly details and incorporate them into their own personal narrative. Each of them will carry the event around with them forever, sometimes neatly tucked away, sometimes raw and oozing all over their face. Each will deal with the trauma in their own way - they may see the dead in their sleep, cower from fireworks, become politically active, retreat into themselves. Maybe some of them will grow up and see no alternative but to traumatize someone else so that they will not feel so alone in their grief.

A few months ago I was hiking in the woods behind a local nature center that sits adjacent to both an elementary school and a shooting range. When I got to a spot in the woods where I could hear both gunfire and the happy sounds of outdoor recess, I had a full panic attack. As the sounds blended in my head, the happy shrieks taking on a tone of terror, my heart crawled into my stomach, vomit burned the back of my throat, and I had to get out of there, running over fallen branches and dodging thorny vines. My startle reflex was heightened for days after.

That was my reaction, and I have never been present at a murder. I can only imagine how much more overwhelming a reaction would be triggered for someone who has actually had to hide behind their bulletproof backpack.

So, survivors: what do you need from the rest of us?

Thursday, October 15, 2015

Adding some letters to our alphabet soup

I just picked up Ryan's first prescription for ADHD meds.

Over the past year, it has become increasingly clear that the boy needs more help in school than behavioral interventions alone. Getting him to look at his spelling homework long enough to actually read the words (as opposed to guessing a random word that starts with the same letter) has become an agonizing chore. My hope is that taking this prescription stimulant will enable him to focus on schoolwork well enough that he can bring his reading skills closer to grade level.

Hopefully ADHD meds will free Ryan up to just be himself. He doesn't have the communication skills to tell me if life as he currently experiences it is stressful or overwhelming, so we're just going to have to try the meds and see what happens.

I'm strangely ambivalent about this monumental change in our lives. I have been taking antidepressants since I was 17, and I'm grateful for the miracles they have worked: antidepressants allow me to be me without suffering constant tears and social paralysis. At the same time, I've done some of my most creative work while in the depths of a depressive episode, and I've had to accept being a bit less clever as the trade-off for remaining a functioning member of society. I also hate knowing that I'm drug-dependent - taking my pills is a daily reminder that I'm broken inside.

I don't want my baby to be drug-dependent like me, but I want him to be able to concentrate on school work long enough to maybe accomplish something and graduate and grow up and become an independent adult, and if drugs are the answer, I have to accept that.


Friday, September 11, 2015

I tried explaining 9/11 to an autistic 9 year old boy. It went as you would expect.

"So, tomorrow is September 11th, and that is a day when we remember a very sad and scary thing that happened."

I thought he might be ready to think about the world outside his own head.

"A scary thing happened?"

"Yes. Before you were born, when Daddy and I lived in New York, some bad guys crashed planes into some big buildings and killed a lot of people."

"They made them dead forever? How can we stop them from making them dead?"

I said, "That's a great question, our country has been at war for a long time."

This is when Ryan launched into one of his grand analogies, in which he gets so wrapped up in his own thoughts he completely derails his own simile.

"They made them dead like when the Angry Birds dead the pigs and they..."

This led to five minutes of babbling about Angry Birds.

Someday I'll try again to tell you about the big, scary outside world, Baby, but for now I will cherish your innocence, your self-centeredness, your complete obliviousness.

Sorrow can wait.

Fear can wait.

Knowing can wait.

And I can hold you close and keep dreaming that you'll never have to smell that horrid smoke yourself.

Thursday, September 3, 2015

Agendas

Everyone in my family has their own agenda for Ryan's speech and language skills - that one thing each of us keeps harping on. They're pretty telling about our personalities.

Stu and I are doing everything in our power to stop Ryan from scripting like Max from that animated abomination Max & Ruby. For those lucky enough to be unfamiliar with the show, Max is a preschool-age bunny who expresses himself in single-word exclamations, while his older sister Ruby blabs on and on and on and excoriates him with frequent use of the phrase "No, Max...." Few tv shows bring me as close to murder as Max & Ruby.

We did not send Ryan to 6+ years of speech therapy for him to grunt at us in one-word sentences. He knows some English, he should use it. Stu recently installed a Firefox extension to block all Max & Ruby material - some parents only care about protecting their kids from porn, but we know what really matters. Freaking Max & Ruby...

* * *
Stu is far more concerned than I am about Ryan's proper use of gender pronouns. He's also likely to raise an eyebrow if Ryan picks up a pink or otherwise female-identified toy, while I say every kid should play with whatever he or she likes. He's old fashioned like that.

* * *
I mostly want Ryan to be able to have a conversation with me. I think in stories, and I want to hear his stories. Also, I get lonely talking to myself all day, and I would love a little more back-and-forth.

* * *
Stu's mother makes a big point of modeling the proper pronunciation of the letter L and correcting Ryan when he starts L words with a Y sound (as he pretty much always does). Her priority is that Ryan's English should sound like the same language everyone else speaks. Appearances are important.

* * *
Stu's dad would like Ryan to respond properly to the question, "How are you?" This is how people have conversations.

* * *
My mother just wants Ryan to get her name right. He's really bad with names: he mixes up the names of his grandparents and his teachers all the time. He mixes up Mommy and Daddy with some frequency - a few times he has even called me Mrs. Wilson. Intellectually my mom knows the misnaming problem goes far beyond her, but I think she takes it personally.

* * *
I don't think my dad has any particular agenda with Ryan. He's something of a zen master, and maybe a little on the spectrum himself, so he just accepts whatever comes out of his mouth and goes with it. I'd like to be as in-the-moment as he is.

Thursday, August 27, 2015

Waiting for the Short Bus

Fifth grader. Sorta.
I see all the moms chatting at the bus stop, waiting for their kids to come home from their first day of school.

And I keep driving.

I pass another bus stop. And another.

And I keep driving home.

But my kid rides the short bus.

Because he's the kind of "special" that requires extra adult supervision to ride the bus to and from school.

The kind of "special" that gets bused to the school on the far side of town because that's the one that has the inclusion program that he needs - the one with one teacher and three assistants and four kids in grades 3-5.

The kind of "special" that is stuck being the youngest kid in fifth grade even though he's developmentally delayed and reads on maybe a first-grade level because his late-September birthday qualified him to start kindergarten when he was four, and I wasn't allowed to hold him back a year because then our school district would not have been required to pay for his services. (And I can't very well hold him back now while his best friend advances to the next grade.)

So I write this post while I wait by myself for the short bus to arrive at my house.

Friday, August 7, 2015

He's not me

He's not me.

He's himself.

I have to keep reminding myself this.

I was reading by age five. I spent third grade staring out the window because the work was too easy for me. By fourth grade I was writing stories and packing my own lunch bag and making breakfast for my dad every morning. When I was younger than Ryan I was performing in musicals and the audience could understand the words I spoke and sang.

I was not the child that Ryan is.

And I can't expect him to be the child I was.

And it's not fair for me to expect him to be anyone else. But this doesn't stop me from making silly comparisons.

But that's unfair to him.

Because he's not me.

He's himself.

And I have to meet him where he is.

Because I love who he is.

Wednesday, July 22, 2015

What happens when you give Ryan paddles

Ryan loves boats. He can spend a solid hour at the marina watching men bring their boats in and out of the water. I try to keep him out of the way as he runs up and down the docks to get as close as possible to the point where the truck's trailer meets the hull of the ship. Last month some friendly idiot actually let Ryan drive his boat; he did pretty well steering, and was psyched for the opportunity to chase geese from on the water.

So yesterday afternoon Ryan and I rented a tandem kayak for an hour and paddled around near Walnut Beach. The owner of Scoot and Paddle outfitted us with life vests and an emergency whistle and gave us some tips on rowing technique (turn your torso toward your rowing hand to engage your core) and water safety (paddle into the wind, don't even try to go out to Charles Island today). If you're in south-central Connecticut, I highly recommend renting equipment from these folks - super friendly, very helpful, seemingly knowledgeable, and patient with Ryan's always-awkward attempts at making conversation.

Doesn't it look peaceful without Ryan:
Stolen from Instagram @ScootAndPadde
I put the boy in the front seat so I could keep an eye on him. This was prudent.

Although he had his own paddles, I can't say he was especially helpful. Instead of rowing, he occasionally dipped the paddles in the water and declared "I'm rowing as fast as I can!" When he wasn't rowing, he was often letting one end of the paddle drag in the water, or holding the paddles in the path of my rowing, or leaning as far to one side of the kayak as he could. I think he discovered every possible method of disrupting the balance of a boat.

I rowed parallel with the shore, admiring some impressive waterfront homes. We passed the occasional swimmer; Ryan insisted that each and every one of them was drowning and needed us to rescue them from imminent death. Two young women were stand-up paddle boarding near us; Ryan wanted to rescue them as well.

After half a mile or so, we turned around and passed between the pilings of a defunct dock. We rowed past Walnut Beach, crowded with families and fishermen. Ryan was quite taken with some teenagers who were jumping off a dock over and over again. He was so focused on them he didn't even notice when he was garroted by a fishing line I hadn't seen in time to avoid.

The waves were strong enough that if I briefly stopped rowing our kayak would turn 90 degrees or more and it would take considerable effort to get back on course. Between the waves and Ryan's lack of cooperation, we didn't get very far in our hour. If we had wanted to row out to someplace worth exploring, we would have needed to spring for at least the half-day rental agreement, but I doubt Ryan's patience for this activity would have lasted that long.

The takeaway: Ryan likes looking at boats and riding in boats, but don't expect him to help row.

Monday, June 15, 2015

Pro tip: there is no water on Venus

Yesterday, Ryan ran away from home.

Stu had scolded Ryan for spilling water all over his library books, and then got more vocal when Ryan's next impulse was to try to play with water in every room of the house.

Not enjoying being yelled at, Ryan announced "I'm going away now." He put on his shoes, said goodbye, and hung a left out the front door.

I decided to follow him from a distance. From in front of my house I watched him until he was just out of view, and then walked at his pace.

When he reached the end of our street, Ryan sat down on the curb. I lurked from behind a car three houses away, watching, trying to interpret his mood. At first he appeared to be singing to himself. When he folded himself forwards and started rocking, I moved in.

"Hey buddy," I said as I approached, "Can I sit with you?"

"I am going away," he said sulkily. "I am going to a place where there is no water."

"Oh yeah? Where's that?"

"I am going to Venus, but I can not find it."

Oh.

This is in line with Ryan's preferred method of handling temptation. To stop his impulse to adjust the volume on our computer, he has stuck 20 layers of tape over the knob on the speaker. To reduce the chances he will shove a crayon through an HVAC vent, he prefers to color in my sewing room, which does not have a vent on the floor. And to keep himself from throwing toys into the toilet, he used to weigh down the toilet lid with a trashcan.

We talked about how difficult it is to find Venus in the daytime sky, and about how far away the desert is, and about how much I would miss him if he went so far away, and about how most of his body is made of water, and about how if he went someplace with no water he would die.

"I am tired. Let's go home,' he sulked.

When we got home we spent some time coloring in my sewing room and drank some juice, and everything was ok.

Wednesday, May 13, 2015

Hi Raul!

The second Ryan and I arrived at the playground yesterday, he walked right up to a boy around his own age and, excitedly, said "Hi Raul!" I've never met Raul, but Ryan often refers to Raul and Mariah as his friends on the school bus.

The boy kind of stared through Ryan and kept playing. I introduced myself to his mom, who was juggling two younger children. She asked me if Ryan had autism; I agreed that he did. She said she is a nurse and works with people with special needs. I started to ask what class Raul was in, but at that moment she had to chase a two-year-old.

Ryan asked Raul if he wanted to go on the tire swing with him; the boy shook his head and kept pumping his own swing.

When Raul's family was heading for the parking lot, Ryan launched into a "No, don't go!" The mom said she could give the kids five more minutes. I said, "They're not even playing together." She smiled and said, "But in his head, they are."

She totally gets it.

The boys ran off playing tag, and then hide and seek. Really playing, really enjoying each other's company.

I chatted for a while with the mom, and started asking about Raul.

"Brian," she said.

Huh?

It turns out, this boy was not Ryan's bus-mate Raul at all.

His name is Brian.

He goes to a different school.

They had never met before.

"Well, you made a new friend!" the mom said.

I kind of love not-Raul's mom.

Monday, May 11, 2015

Too honest, to my face

"Miss Meredith? Why does Ryan act weird sometimes?"

My friend's daughter, "Rachel," is a year younger than Ryan, but developmentally she's like a decade ahead of him. At 8 years old she loves reading Harry Potter to herself and has already perfected her eye-roll.

We were finishing up lunch on my deck. Ryan was sitting at the table reading a graphic novel out loud to himself - loudly and enthusiastically enough that he probably didn't notice our conversation.

I launched into a version of my standard Explaining Autism to a Kid speech. We've had this conversation before; this one started very much like previous versions did.

And then, Rachel got a little too honest:

"Cuz I don't really like him. Like, I don't hate him or anything, but..."

This was the first time Rachel had expressed anything but fondness for Ryan. My friend and I make her and her sister and Ryan spend quite a bit of time together, and they have almost always appeared to enjoy playing with each other. I'm told they often ask if Ryan can come over and play, and Ryan certainly gets excited when he knows they're going to have a play date.

My friend shifted into one of those teaching-moment conversations that results in Time Out and a sulky apology. I excused myself to sob uncontrollably.

Monday morning, my heart still hurts.


Rachel said it out loud, but I can only assume lots of Ryan's peers think it to themselves: he's weird. He's hard to play with. We don't hate him or anything, but we don't really like hanging out with him.

All the therapies and in-school supports in the world aren't going to turn him into a typical kid - one that his peers can readily play with without putting in a bit of extra work; one who will reciprocate in an expected and predictable way.

And some day, someone is going to say that to his face, or in his presence when he's not wrapped up in reading. And he's going to be crushed.

And he's desperately going to want that kid to like him, but he's not going to know how.

And he's going to doubt his own self-worth and kick himself and wish he were typical and hate that he's not.

Because all he wants is to play with other kids, even though he's really bad at it.

All he wants is to find someone to play hopscotch with him in the driveway. And all he can think to do is run down the street ringing doorbells, not waiting for anyone to answer.

And someday a kid who Ryan considers his friend is going to tell him to his face that his efforts aren't good enough. That he isn't good enough.

And he's going to believe it.


Sunday, May 10, 2015

What I want for Mother's Day

For Mother's Day, leave me the fuck alone.

I don't want to hear your sound effects. The oinking. The chirping. The semi-Yiddish throat-clearing sound. Just shut up for a while.

And the whining - cut that crap out.

Don't make me brace myself for impact as you throw yourself at me at full speed while holding scissors or a rake.

For fuck's sake, don't freak out because you can't accurately replicate in real life whatever SpongeBob did in a cartoon.

And don't wake me up by busting through my bedroom door shrieking that you "can not find" a video on the iPad.* I have clearly explained numerous times that our first-generation iPad is so obsolete it no longer supports YouTube. Get over it.

If you love me, just let me disappear for a couple of hours. I promise I'll be a much nicer mommy when I come back.


* This actually happened Mother's Day morning.

Friday, May 8, 2015

Friendship: Gateway to a Life of Crime

A few weeks ago, two little girls rang our doorbell and asked if Ryan could come out and play.

At the time, I thought this was the greatest day of our lives. Now I realize that was the day Ryan stepped out on his journey to a life of crime.

Ryan and I had been taking a walk, when two young sisters rode past us on scooters. Ryan took off chasing them, desperate to play with them. Sadly, he couldn't run as fast as they could scoot, and he got frustrated to the point of tears. The girls were very sweet and tried to include him by rolling slowly along side us as we walked home. We dropped them off at their house, six houses down from us.

Ryan spent the next few hours sulking. He had really wanted to play with those kids, but he just couldn't work out the logistics of two kids on scooters and one kid without wheels.

Late that afternoon, our doorbell rang. The girls from down the street asked if Ryan could come out and play.

Yes, please!

Ryan has a scooter, but he hasn't yet developed the coordination to ride it properly, so we opted for skates. The girls didn't want to stand around while Ryan geared up, so they told us they would meet us at the park. Ryan and I skated to the park, the kids played one or two painfully awkward rounds of hide and seek, and then the girls had to go home.

I was thrilled that Ryan had finally found some neighbors willing to play with him, and he was clearly happy to have someone other than me to hang out with.


The next week, Ryan really wanted someone to play hopscotch with him (technically he said he wanted someone to watch him play hopscotch) in our driveway, and he was emphatic that that "someone" could not be me. I suggested he go ask the girls from six houses down. He thought this was an excellent suggestion, but made it clear that this would be a solo mission: I was to stay home and not follow him to their house. I told him to go ring their bell, and then to come right back.

About 20 minutes later, Ryan came home with a lady who lives waaaaay down the street. It seems the girls had not been home, so he had taken it upon  himself to ring every doorbell for the next 1/3 of a mile or so.

Every. Doorbell.

He didn't wait around to see if folks were home. He didn't consider whether he knew the people who lived in a particular house or whether or not they had kids. He just rang and ran.

I explained that we can't do this.


Yesterday, again wanting someone to play with, Ryan announced he wanted to see if our next-door neighbors were home. I stopped him and said "What are you going to say when you ring the bell?" He scowled at me and barked, "I'll talk to you later, Mommy," and he marched next door.

After several minutes, I went over there to look for him, and to make sure he wasn't ringing everyone else's doorbell. We found him in the neighbors' back yard.

"I could not find them in their house!" he complained.

"Wait," Stu asked, perplexed by this phrasing "did you go inside their house?"

"Yes of course I do."

No. No no no, we explained, horrified: you can not go into someone's house when they're not there. This is illegal. You can get arrested and go to jail.

"I want to wait for them to come home," he said, heading for their house.

We told him, in no uncertain terms, that he could wait on our lawn, but not on their lawn.

"Can I wait at their house?" he persisted.

"No," I said, "That would make you a stalker."

"Can I be a stalker?" he asked, hopefully.

"NO!!!!"

"Pleeeease???" he begged.

So now Stalking is on the ever-growing list of Things We May Not Do.


The moral of this story: Don't let your kid play with the neighbors. Not even once.





Monday, April 6, 2015

Don't Feed the Trolls

A friend just alerted me to an article about Theatre Development Fund's fantastic Autism Theatre Initiative. Thanks to TDF, we have been able to take Ryan to four Broadway shows without worrying about his stimming bothering other patrons, because the entire audience was either autistic or accompanying someone on the spectrum. Seeing shows through ATI has been a completely positive experience for our family.

So it was all I could do not to stab my computer screen with a butter knife when I read some troll's comment about the article (on The Atlantic's Facebook feed):
"What's next making pork more kosher?"
I have about a dozen problems with his comment, but instead of blowing up at his stupidity, I calmly put on my best grown-up online voice and replied,
"I don't understand your analogy. Are you saying programs that make theater more accessible to disabled audiences should not exist? Are you saying disabled individuals can never properly enjoy theater? Please clarify."
First, this is a great program, and the article was 100% positive. Why be so negative? (The public portions of this guy's Facebook profile indicate he's consistently negative about many issues, including the US government, his own parents, France, Amnesty International, and the ACLU, so I probably shouldn't take any of this to heart. But, you know me...).

Second, this analogy is garbage. Since pork can never be kosher, no matter what you do, logically he is saying autistic people can never attend theater, no matter what TDF does. Clearly many autistic individuals can, and do, enjoy live theater, either thanks to TDF or on their own.

Perhaps he's trying to say autistic people shouldn't attend live theater, or, more broadly, shouldn't participate in society at large.

Maybe in his head the pork in the analogy is autistic people themselves, and he's trying to say you can dress an autistic person up and take him to the theater but you can't make him kosher, ie: clean, acceptable, Human.

I believe in personal freedom, so I don't feel too kindly toward anyone who wants to stop someone else from enjoying his or her life, provided that person's actions do not harm anyone else. Live and let live, Troll.

Mostly, I really have to stop reading the comments.

Thursday, April 2, 2015

9 Things Cats Know About Autism

Today is World Autism Awareness Day. As we all know, cats are the common denominator of the internet - nay, of humanity - so in an attempt to educate folks who don't regularly read autism blogs like this, I shall attempt to harness the power of the cat. Regular readers, feel free to skip this post. Unless you like cute cats.

1. Autism is a cat. It is not a defective dog. 

It is perfectly content being a cat. You can try to put it on a leash and teach it to roll over, but you're just going to get scratched.

2. The autism spectrum is a diverse and confusing range of symptoms, behaviors, challenges, and strengths. 

Some individuals may flap their hands, or pass objects in front of their eyes, or stare at ceiling fans; and some may not do any of these things. Others may have trouble making eye contact or understanding social cues; and some may look you straight in the eye and say hello. Some may be able to tell you every imaginable statistic about your favorite baseball team; others may not be able to say a word. Some may look perfectly "normal" in public; others may remind you of caged animals.

3. Autism is invisible. 

This is part of what makes navigating the world so complicated: if a kid sees a peer acting strangely, her impulse might be to laugh at him or exclude him from her game. If it's obvious that there's something atypical about him - like if he uses a wheelchair - that might trigger her to be more compassionate. But if the strangely-acting person looks "normal," compassion might be harder to come by.

4. That oddly-behaving person is still human 

He has all the same feelings as other people, and loves the people in his life and deserves to be treated with compassion. We're trying to teach kids to be respectful of their peers with autism, but the broader message is that all of us should be respectful of all people.

5. Just because a person may not speak does not mean he does not hear, and feel, and understand. 

So try talking TO him, not ABOUT him. And LISTEN to his body language.

6. Autism is an inherent part of who a person is.

Autism is as much a part of who a person is as his ethnicity or skin color or gender. And like all of those attributes, it is not inherently better or worse than any other way of being.

7. Sensory integration problems often plague individuals on the spectrum. 

Imagine how you would react if every sound were amplified ten times, or if you could not sense where your own body was in space, or if even your softest clothes constantly grated on your skin. When an autistic person has a meltdown in public, it's often because he can't handle the sensory overload.

8. Along with challenges, there are strengths.

Children with autism may be developmentally delayed by a couple of years in some ways but operate at an age-appropriate - or advanced - level in other ways. In spite of whatever limitations they have, many individuals with autism are quite gifted in other areas.

9. Individuals on the spectrum are loved and are loving. 

Autistic people are loved by their families and are capable of loving others and of living lives that are meaningful and satisfying. Life with autism can be as much a cause for celebration as any other life.

Tuesday, March 10, 2015

Death

Ryan has been thinking about Death.

A few months ago, Ryan developed his own variation on the sort of "bang bang you're dead" games kids often play: instead of pretending to shoot his victim, Ryan touches you with the "dead finger" to "make you dead." He is the only one who has a Dead Finger - I can not "dead" him back. Victims are welcome to turn into zombies (sorry, "zomblies") and chase him around the house.

This week, Ryan asked us direct questions about Death and Dying. I have to pause here so you can really feel the weight of this: he asked us direct questions. Ryan has never before asked us anything that did not pertain to immediate needs (things along the line of "Can I have a snack?" or "Where are my pants?"). In nine-and-a-half years of parenting I have never had to field a single question about why the sky is blue or how planes stay airborne or where babies come from. Never.

Just to sit on this point a moment longer, Ryan not only asked us questions about Death and Dying, he also listened to our answers and asked follow-up questions. We have been having actual conversations. About something real and important.

It's both thrilling and terrifying.

This all started a few weeks after we read (and re-read, and endlessly quoted) a children's graphic novel called Bird and Squirrel on the Run. A cat keeps trying to eat a nervous squirrel and a carefree bird. Squirrel loses his stash of nuts and is afraid of starving to death during the winter, so he and Bird head out on an epic road trip - complete with theme song - south.

So from this delightful comic book, Ryan learned that one can die from not eating enough food.

Last week I was sewing my latest commissioned project - a series of items made from a flannel shirt. Ryan asked whose shirt it was, and I explained it had belonged to a man who had died.

"He died?" Ryan repeated. Then he asked, "Because he did not have enough food?"

I said I didn't know how he had died, but that he was very old.

Ryan then started trying to figure out how old one must be to die. I told him that people very rarely live more than 100 years.

At that moment my mother called. Ryan immediately asked her how old she is. Thankfully she had a sense of humor when I explained that Ryan was just trying to determine how close she is to death.

Highlights of his thought process on this subject:
- he does not want to be 100 and die;
- he is concerned that when we die there are no more people left on Earth;
- he doesn't like that death is permanent.

At one point this afternoon while he was freaking out about the matter of what happens after we die, I started to say, "Well, some people believe..." and he cut me off with "No, you will not say any more words about death."

Well, you're the one who brought it up, Kid.


This may be the closest thing to a typical parenting experience we've ever gone through. And it feels amazing.

Friday, February 6, 2015

Dear Anti-Vaxer

You do not vaccinate your children.

You say you choose not to immunize your children against the measles and other highly-contagious diseases because, even though not a single valid scientific study backs you up, you believe that vaccines cause autism.

I could quote source after source to prove to you that vaccines do not cause autism, but I'll let other people do that.

I could rattle off facts about herd immunity and how you're endangering babies too young to be vaccinated, but I'll let other people do that.

I could even show you examples of unvaccinated children with autism. But I don't have time to spell all that out. 

What I need to tell you is what your decision says to my autistic son.

You are telling my son that you would rather risk your own child dying than have her turn out like him.

You are telling my son that you would brazenly risk the lives of countless babies in your community than have your own child be like him.

By your actions you are showing my son that he is unacceptable. That he is not human. That the world would be better off without him.

From the bottom of my heart: go to hell.

My son is a real live person; he's probably a lot like your own children. His name is Ryan - named after his great-grandmother. He's nine years old. He is funny and sweet and charming. He has friends, and he cares about them deeply - especially his bestie. He likes rollerblading and watching cartoons and baking and reading comic books and coloring and playing Angry Birds. He likes mac and cheese, and he will eat a whole pizza by himself if you let him. He sings and dances badly but with great passion. There's a girl in his musical theater class who has a crush on him, and he's as clueless as you'd expect a boy to be. His favorite shirt is the red one with the stripes; his second-favorite has Darth Vader on it. His room is always a mess. 

And I love him.

And I would do anything to keep him safe and healthy. I would never knowingly put him at risk of catching measles or polio or any of the other diseases modern science has managed to all-but-eradicate.

Because he is more than acceptable - he is awesome. And he is human. And the world is a better place because he's in it.

So please show some more respect for him and for all individuals with autism spectrum disorders - they are not the terrifying boogeymen you make them out to be.

Thursday, January 22, 2015

Step 1, cut a hole in a box...

Ryan has a favorite box. It's a huge cardboard wardrobe box that has been taking up real estate in my living room for months.
He's been known to sit in this box for an hour at a time - he will climb into the box with a flashlight or lantern and an assortment of toys, instruct me to close the top and cover it with a blanket, and he's all set for the afternoon. Occasionally he'll request a sandwich or juice be delivered to the box; I have to remember to drape the blanket over the top of the box again before I leave him to, well, whatever it is he does in there.

Four days ago, Ryan sequestered all his bedtime friends - a variety of plush bears and moose and his beloved White Blanket - in the box. He insisted they were to spend the night in the box. Ok, we thought, maybe he's working through the idea of growing up and he wants to test himself to see if he can sleep without his bed full of stuffed animals.

The next day, he added most of his favorite toys to the box. Small items, like his robot letters, were poked in through an oval handle cut-out, and larger things, like his dinosaurs, got dropped in from the top.

Yesterday, Ryan added a seemingly random collection of things to the party in the box; I was able to convince him not to put my phone in there, and after 18 hours I convinced him to free my boxing hand wrap.

Before school this morning, he pulled the two largest stuffed animals from the box and placed them on the stairs.

I've asked Ryan what's up with the box, but I don't understand his non-answers. I want to assign this activity meaning, but he might just be working on filling the box.


Friday, January 16, 2015

A Boy Who Can (Not) Talk

At the first rehearsal for the Adaptive Dance program's spring variety show, Miss Debbie wanted to get an idea of how well the kids can sing.

Spoiler: they suck.

There's a special circle of Hell in which thousands of young children belt the Frozen soundtrack in an endless loop. I have caught a glimpse of this dismal place, and I have been inspired to try to lead a better life from now on.
My reaction watching this train wreck.
So, the kids are wailing along with Let It Go, having a glorious time. "John," a nonverbal 21-year-old young man with Down syndrome, is singing in a sort of open-mouth hum, his tune as recognizable as anything the other kids are generating. Ryan, rather than singing (although he certainly knows this song), is visually stimming on the other kids, looking from one child to the next in a side-eyed squint. He zooms in close on John's face. "That boy can not talk."

When Ryan has made this observation about John before, we have discussed that different people communicate in all sorts of ways, and that just because an individual doesn't use words it doesn't mean he doesn't have something to say. This time I chose to acknowledge that his observation was correct and then let it go, let it go.

What struck me this time was what Ryan's words reveal about how he thinks of himself. Ryan clearly identifies himself as "a boy who can talk," as opposed to John, "a boy who can not talk." Speech is like a light switch: on or off. On/off, Ryan can talk/John can not.

Other kids, though, would probably identify Ryan as "a boy who can not talk" - his command of grammar is awkward at best; his speech sounds more like what you'd expect from a three-year-old than from a fourth grader; and his conversation skills are rudimentary and unpredictable. On/off, we can all talk/Ryan can not talk.

Ryan's speech is on a dimmer switch, but I don't think he's aware of that subtlety.

Hell, I don't think any of these kids grasp the idea of subtlety. My ears will be bleeding for weeks...