Saturday, December 31, 2011

Dirty little secret from a Published Author

I have a confession: I'm not an expert. At anything.

In the couple of months I've been a "published author," I've learned that having your name on the cover of a book lends you an aura of legitimacy, whether or not it's deserved.

Because of the book, fantastic opportunities have been coming my way recently - write an article for our magazine! join a committee to help make our museum exhibit more autism-friendly! come talk to our support group! - and I'm totally in awe. I'm grateful as hell, but I feel like I need to preface my participation with huge disclaimers:

- I have no academic background in this stuff, unless you count Google University. I'm an MFA, not an MD or a PhD.

- I only have first-hand experience with one child, and he swims near the shallow end of the spectrum. And some days I want to sell him to the circus.

- I've only given a handful of in-school talks, and I modeled half of my talk on one recounted in someone else's blog.

But hey, if you're cool with all that, I'm happy to take that brilliant opportunity you're throwing me. Let's go!

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Shameless plug: Ben Has Autism, Ben Is Awesome is available direct from Jason and Nordic Publishers.

Friday, December 23, 2011

Best. Chanukah Party. Ever.

*ding dong*

"Hi, random neighbor downstairs. Would you like to come over and share some of our latkes right now? Oh, you're not as spontaneous as my kid? Oh well."

*ding dong*

"Hi, random neighbor..."

 For the second night of Chanukah, Ryan and I made some latkes. Latkes are best when they're fresh out of the pan, so I rang my friend Peggy's doorbell and invited her to come down the hall and have some with us.

One grown-up guest was clearly insufficient for Ryan. My pleasant conversation with Peggy was interrupted by several cries of "We've got to FIND everybody!"

"Do you mean you want to invite more people over for potato pancakes?" I asked.

"Yes!"

"Who should we invite?"

"We got to find EVERYbody!"

When Ryan started walking up and down the hall, still wearing his blue Chef in Training apron, calling "EVERYbody, where ARE you?" I realized I had to get involved.

We started walking the building.

Our next door neighbors weren't home. The kid at the end of the hall wasn't home. Ryan's buddy Jason wasn't home. Alison was home, but confessed she doesn't like latkes. More rejections. Things were looking dicey.

We eventually found a willing and available guest: 22-month-old Aiden and his mother. After they had eaten enough latkes and applesauce, Ryan asked little Aiden, "Can I play with you?"

Whoa.

I found some toddler-safe toys, and the boys ran around and shared pretty well and were having a wonderful time.

At some point Ryan bumped into Aiden and scared him, and the poor little kid started crying. I pointed out to Ryan that he had scared the baby. Ryan became visibly concerned. He said to me, "Got to make him happy!" Then he turned to Aiden and said, "Got to make you happy!" He immediately got to work covering Aiden in kisses.

No surprise, I got a little teary.

When it was time for our guests to leave, Ryan said appropriate goodbyes and did not get upset. He was delighted with the party he had just thrown.

Hands-down, this was the best spontaneous 15-minute Chanukah party I've ever had.

Wednesday, December 21, 2011

What have I gotten myself into?

Somehow I have acquired five part-time jobs, only two and a half of which pay.

My monster making / quilting business is doing well enough that I have four monsters, a quilt, and a penguin to finish.

I assist a project manager, mostly from home.

I'm promoting my book. (Have you heard about the book?)

Starting in January I'm on the Board of Directors of my roller derby league, in charge of PR.

And there's skating, which takes up as much time as a part-time job.

And what am I doing right now? Writing about what I have to do, instead of just doing it.

Monday, December 19, 2011

In his misery, I found great joy

Part of our bedtime routine involves Looking At The Calendar. It's a big monthly calendar taped to the back of Ryan's bedroom door. We put little pictures on it to represent whatever is coming up - school, Chrissy Time, holidays, haircuts, my practice schedule - so he knows what to expect. The calendar is also a sticker chart, so as he crosses off each day he adds whatever sticker he has earned, and it's easy for him to see how many more stickers he needs to get a prize.

Last night at calendar time, Ryan crossed off Sunday and started counting how many stickers he had earned. He counted back a day and started sobbing, pointing and screeching at Saturday. At first I thought he was upset he had not earned a sticker that day, but then he told us the problem: he had missed a birthday party.

On Friday Ryan had come down with fever and a runny nose. I told him Friday night that if he was still sick in the morning, we would have to skip his cousin's birthday party. He looked at me hopefully and said, "We CAN go to the party?" I told him we would have to wait and see.

Saturday morning he still had a fever, and I announced we would be staying home to as not to infect the birthday boy and his friends. Ryan was miserable enough with his cold that he seemed content with that.

But on Sunday night, looking at the little picture of a birthday cake I had drawn on the calendar, Ryan was devastated. This was the first time I had seem him demonstrate any sort of desire to go to a party at all. I asked him what aspect of the party he was most upset about missing.

"Is it the playing with other kids?"

"Yes!" he sniffled.

"Is it the balloons?"

"Yes!" he wailed more emphatically.

"Is it the cake?"

"Yes!" Tears and snot soaked into my shoulder.

"You're disappointed, I understand." I hugged him tightly. I suggested we could have our own party after school Monday, even though it wouldn't be the same.

And in Ryan's misery I found great joy: the joy of my child experiencing a perfectly typical feeling, for a perfectly typical reason. The joy of knowing that he really does want to interact with other kids, even if he's not always sure how to go about it.

Now I have to thaw some cupcakes and pick up a few balloons.

Tuesday, December 13, 2011

The Great Marshmallow Caper

My little wheat tweaker is in heavy withdrawal. Imagine an adult trying to quit smoking - that's my six-year-old. Irritable. Thin-skinned. Crabby. I had to scrape him off the pavement to get him onto the bus this morning, and I'm told the school day didn't go much better.

I had been trying to think of a fun way to kill some time in the afternoon without angering the beast. The answer came to me while flipping through a parenting magazine in a waiting room this morning. I came across a suggestion for a fun little experiment you can do with your kids: put marshmallows in the microwave for 30 seconds and watch what happens. What could possibly go wrong?

When Ryan came home, I told him my plan: we would walk to the drug store, buy some marshmallows, and bring them home for our experiment. He seemed game for it.

We walked to the store without incident. The whole way, Ryan was telling me that we were going to the drug store and were going to get marshmallows. He was on task. All was going according to plan.

Then we walked into Duane Reade.

One step into the store he started crying, shrieking "They do NOT have any marshmallows!" I tried to calm him down. I explained that we hadn't even gotten to the part of the store where they keep the marshmallows.

"Aaagh! Where ARE the marshmallows?"

As calmly as I could, I told him we would look for them in the store, and if the store didn't have them, we would just go to another store. This was moderately acceptable to him.

The drug store did not, in fact, have any marshmallows. The manager said they only carry them in the summer. (We live in a city; I think the locals are far more likely to put marshmallows in their hot chocolate than to go build a freaking campfire on their fire escape. But what do I know?)

"That's ok," I tried to convince Ryan, "we'll walk to the second drug store." He just barely held himself together for the one-block walk to CVS.

But they didn't have marshmallows, either.

I dragged my crying, whining kid out of the store, calmly telling him if he doesn't shut the hell up we're not getting any damn marshmallows. We worked on some deep breathing exercises. I squeezed him as hard as I could. We took our time.

Giving up was not an option: Ryan would have spent the rest of the night fretting about how we hadn't completed what we had set out to do.

We took some more time before walking into a small market, which also did not have any marshmallows.

We chanted "we're calm, we're calm" all the way to the small grocery store down the street, which, as luck would have it, also did not have any marshmallows.

I told Ryan we had one more store to try, and if that bodega didn't have marshmallows, we would get our car and drive to the supermarket. At this point he was beyond frustrated, and a cold wind wasn't helping. I coached him to walk backwards into the wind. This was silly enough that it distracted him from his frustration. Then I instructed him to spin in circles while walking; he giggled and delighted in being dizzy.

We walked calmly, even happily, into the bodega. And on the top shelf in the aisle on the left, there were a dozen beautiful bags of big, fluffy marshmallows. I gratefully paid for them, and Ryan clutched the bag all the way home.

All is well with the world.

And I highly recommend putting a few marshmallows in the microwave for 20-30 seconds. For extra fun, draw some faces on them first with a marker.


Monday, December 12, 2011

One week down, one to go

This bout of wheat-exposure hasn't been nearly as bad as the last time. He has been more tantrum-prone and his attention span has been shot, but he has not lost his language skills or his connection to other people. Stu thinks his language may even have improved somewhat, but I am not convinced.

The week has been rough, but it could have been much, much worse. And for that I am grateful.

In just one more week, we should be ready for proper social interaction. Or, you know, as close as we ever manage.

Tuesday, December 6, 2011

Just a Little Bit

At a family party this weekend, Ryan nibbled on someone's wheat hot dog bun. A whole roomful of relatives who know he is allergic to wheat watched him do it. When Stu turned around and realized what had just happened, he yelled at one of the relatives and asked why the hell she hadn't stopped Ryan from eating someone else's bread, she calmly replied, "It was just a little bit."
There's no such thing as "just a little bit" of a food allergen.

Ryan's reaction to wheat doesn't look like a typical "allergic reaction" - there are no rashes, no blisters, no sudden loss of the ability to breathe. You could look at him right after he has eaten wheat and think he was perfectly fine.

Here's the problem: Ryan's body does not break down wheat proteins completely, and his brain interprets the partially-processed amino acids as an opiate.

About two days after wheat exposure, he gets stoned.

And while he's stoned, he is less able to function. His language skills disappear. His social skills disappear. His bladder control disappears. His concentration is shot. The meltdowns come rapid-fire.

It's a freaking mess.

And then his body goes through withdrawal. Remember when I tried cutting gluten from my diet, and I wanted to cut people? Yeah, it's like that, but without the rational understanding that this awful feeling shall pass.

The whole reaction event, from exposure through withdrawal, takes two weeks.

Two. Weeks.

So if you see my kid eating someone else's food, stop him, because 1) it's rude; and 2) an allergy is a big deal, even if the bite he takes is small.

(Today is Day 2 - behavior has been a little off, but I'm not ready to conclude that's because of wheat exposure. We have to wait and see.)

Friday, December 2, 2011

One Ringy Dingy

Last night, Ryan had his first real phone conversation.

We had been playing outside, and Ryan tripped on the sidewalk and skinned his knee and elbow and did something to his fingers that could only be cured by slobbering all over them. He cried all the way home.

As he nursed his wounds with his magical healing White Blanket I tried to distract him by reading him a book. Halfway through the story, my mother called. To keep Ryan distracted, I turned on the speaker phone function.

"Do you want to say hi to Grandma?" I asked. I expected he would say "Hi, Grandma" and then tune out, or just say Yes to whatever Grandma asked him.

I was wrong. So wrong.

Unprompted, here's what poured out of his mouth (all in a dramatically sad tone):

"Hi, Grandma. I tripped and fell on the sidewalk and I hurt my knee and I put a bandaid on it and White Blanket feels much better."

Whoa.

Grandma, in shock and awe, tried to keep the conversation going. Ryan maintained his dramatically sad tone and provided a few perfectly appropriate Yeses.

So, for the record: Age 6, First Phone Conversation.

There's nothing our kids can't accomplish.

Saturday, November 26, 2011

Manah Manah

If you know me at all, you know I am a Muppet fan. Jim Henson is my ultimate role model - I can think of no better embodiment of creativity and wonder and all that is beautiful about human potential. I once stalked Frank Oz when he came to a show at a theater I was working at just so I could chat with him for a moment in the lobby. The greatest failed job interview of my life, for an internship with the Henson Foundation, brought me into the fabled Henson office on the east side; more than a decade later I can describe every feature of that townhouse in excruciating detail.

The stained glass window above Jim Henson's desk.

I have been imposing my Muppet agenda on Ryan since infancy. He has grown up on a diet of Sesame Street, Fraggle Rock, and The Muppet Show. I am more than a little proud that he likes to turn random objects into puppets (though I could do without the talking toilet seat).

So it goes without saying that I had to take Ryan to see The Muppets in the theater opening weekend. He loved it. We lost him a little at the end (he started yammering loudly during the last, and quietest, scene), but he left the theater singing Manah Manah and the Muppet Show theme song, so I count that as a victory.

As a Muppet purist, though, I had some serious problems with this movie. While there were lots of great elements (including a perfect cameo by my gay Hollywood boyfriend, NPH), and overall I'd give the film a B, there were things that went against the spirit of the Muppets, and which caused me great distress.  

Spoiler Alert! Spoiler Alert!

For one thing, the Swedish Chef should never have subtitles. He does not need translation. And neither does Camilla (Gonzo's chicken girlfriend).

Also, if the Muppets have to kidnap a celebrity to host their telethon, by the middle of the show said celebrity should embrace what's going on; having Jack Black object to his fate the whole time seemed out of the spirit of the Muppets.

There was a bit too much snark, a bit too much "we know we're in a movie" shtick. Uncharacteristically lowbrow humor. Penguins singing in English. CGI when animatronics would have worked. Wrong wrong wrong. It's too bad Frank Oz and Brian Henson were not on board for this project - they could have righted the ship.

But it had heart, and a song that's been stuck in my head since yesterday, and has probably turned a new generation on to the magic of the Muppets, so I'm going to try to let go of my objections and embrace the new Muppets.

Wednesday, November 16, 2011

Magic Brainstem Doohicky

This will make me sound like the worst parent in the world, but I kind of like it when Ryan is sick.

It's not just because a sick kid bounces off the furniture less and is easier to control. It's because a fever reduces a lot of the hallmark symptoms of autism.

See, there's this doohicky in the brainstem. It regulates fever, and it also governs the release of the neurotransmitter noradrenaline, which is critical for paying attention to your environment. It also contributes to the symptoms of opiate withdrawal, which is what someone like Ryan experiences after accidentally consuming wheat products. There was a great article in Time about this magic brainstem doohicky -go read it, it's good stuff.

So for the last week while Ryan has been running a fairly high fever (it turned out to be strep throat), I basked in his sudden ability to communicate. When a toy went missing, Ryan used complete sentences to tell me precisely where to search - "I think it's behind the cubbies. Can you find it, please, Mommy?" When presented with a choice of two lollipops, he was able to pick one easily - he didn't start by choosing the empty space between them. He was cooperative, generally content, and willing to try to talk to his grandmother on the phone.

Now, if he could do all that without the 103.6 degree fever, we'd be golden.

Sunday, November 13, 2011

The perfect pick-me-up

I spent most of today on the couch, hiding under a pillow. Ryan's been running a high fever all weekend, and my body is fighting whatever he has; I feel like I got sideswiped by a truck.

From under my pillow, I heard Stu trying to get my attention, saying "Honey, it's time to pull yourself together and get excited."

I peeked out. Stu was holding the world's most thrillingly beautiful padded manila envelope. Inside were six paperback copies of Ben Has Autism, Ben Is Awesome.

"It's your book!" he cooed.

My book.
Please excuse the mess. And the unwashed hair. Ah, screw it, no excuses. Deal with my mess!

Breathe.

Nearly two years from when I had written it.

My first book. In my hands.

Yeah, you know I cried. It would be a more surprising story if I hadn't.

I read it, pointed out the things that weren't exactly as they were supposed to be, breathed, sniffled.

My book.

Instantly cured for the moment, I showed a copy to Ryan. I showed him my name on the cover. He read the dedication: "For Ryan." I read to him. I read him the book I wrote for him and for kids like him. I don't know if Ryan liked the book, but he paid attention, which is as much as I could hope for on the first read of a new book. I imagine we'll be reading it again. He made a monster face when Ben made a monster face. He made an elephant sound when Ben made an elephant sound. He seemed to identify with Ben - they have a few things in common, you know...

Artwork (c) Rebecca Rivard

As I read the word Autism aloud, I wondered if my message would actually get through to Ryan. I imagined other parents struggling to say that word in the presence of their ASD children for the first time. I hope this book will make that conversation easier to start.


Ben Has Autism, Ben Is Awesome is available direct from Jason and Nordic Publishers in both paperback and hardcover. Pick one up for a child in your life, or donate a copy to your local school or library!

Wednesday, November 9, 2011

The Look

10/21/11 - Ryan did very well across the street in math today. Although I had to refocus and redirect him a few times but he did well with today's lesson. - Mrs. B.

I thought Ryan was doing well with his new math class. Mrs. B wrote positive, reassuring things in his notebook.

At our IEP review meeting this morning, I got a very different picture.

I requested this meeting so we could make the inclusion math class an official part of his individual education program, so that the school district would be required to have a staff member consistently available to take him to the class.

I sat down at the meeting with my agenda in mind: consistency, increased interaction with typical peers, get Ryan out of that tiny room full of screaming children. The whole team was around the table: speech and occupational therapists, Mrs. B, Mrs. W, school psychologist and her interns, liaison from the Board of Ed. We had leftover Halloween candy and a basket of cheery purple pens.

I thought I was ready.

Someone asked how Ryan is doing in the inclusion math class. Mrs. W gave her impressions: Ryan spends most of his time in class scripting. Loudly. "He's very disruptive to the class. All the other children keep turning around to look at him."


All the other children keep turning around to look at him.

I tried to hide my leaky eyes.

Mrs. B added that for most of the nine sessions Ryan has had in Mrs. W's math class, Mrs. B and her assistants have pulled Ryan out of there after 10 minutes or so because of his inability to focus. This should not have been news to me. Ryan's communication notebook should reflect what's actually going on, not tell me rosy stories giving me false hope about his progress.

My eyes were on fire. I was quietly choking.

We had a rational discussion about the purpose of putting Ryan into Mrs. W's class: to provide opportunities for interaction with typical peers. We agreed that math is not the best forum for such interactions. We noted that Ryan is receiving the same academic content in his 8:1:2 class as the other first graders are getting, just in an individualized setting. We agreed that Ryan lacks the social readiness to properly participate in integrated math. We agreed to find additional opportunities, such as art, lunch, or recess, to work on this goal. We agreed to table the matter of changing Ryan's IEP until various schedules could be coordinated. I thanked everyone and got the hell out of the room as quickly as I could.

In moments like this, I just hate autism. I hate knowing how hard it will be for my baby to integrate with other kids his age. Why does this have to be so hard for my baby? I know Ryan doesn't care what teachers like Mrs. W expect of him, but that's part of what being a member of a society is about: to be a functioning member of society, one must understand the concepts of authority and expectations - that there's a time to talk and a time to listen.

I know that the committee hit upon the proper, rational course of action, but my heart just stops when I imagine a roomful of typical first graders turning around to stare at my baby. Please, someday, let him fit in.

Friday, November 4, 2011

The difference a week makes.


Remember how hard last week sucked? That post directly below this one? The boy's understandably awful behavior and inability to concentrate in math?

In the midst of all that for some reason, I decided to try cutting wheat out of my diet. I had read an article about why so many more people are sensitive to gluten these days, and I learned that thanks to genetic manipulation by the good folks at Monsanto, wheat now contains something like 500 times more gluten than it did a generation ago. Reading the list of symptoms of gluten intolerance, I decided to give wheat-free living a week to see if it made any difference in my life.

My first sign that perhaps wheat had been having an effect on me was that on my second wheat-free day, I went into withdrawal. Fatigue, intense food cravings, mood swings, the whole bit. Days of dragging my feet and feeling like crap.

One week later, both Ryan and I are better than ever before.

Ryan's teacher called yesterday to report that Ryan had gone two days at school with absolutely no scripting at all. He has been focused on his work, making lots of appropriate eye contact, and answering questions verbally.

Outside of school, he's also been pretty freaking fabulous. At the park the other day, he was playing beautifully with a little boy he had never met before. They were running around together and laughing. When another child started throwing snowballs, I encouraged Ryan to try joining in. He scooped up some snow with his bare hand (this boy usually insists on gloves for all winter activities), threw it appropriately at his friend, smiled at him, and said "Got you!" And he didn't get upset when he got hit in the face with snow.

And as for me, I'm out of withdrawal and filled with more energy than I've had in forever. I'm focused, I'm less forgetful, I'm getting stuff done. I really don't want to be gluten free forever - as a native New Yorker, I can not imagine life without proper bagels or pizza - but I can't deny that I feel great.

For Ryan, the difference might also be a change of diet. I've been trying to think of anything at all that has changed in the last week that could have contributed to his sudden progress at school, and the only thing I could think of is that he's been gorging on Halloween candy. Maybe a little extra chocolate is good for you?

You're welcome to use that excuse for yourself, too. Off to raid the plastic pumpkin...

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Shameless plug: I'm also in a great mood because my book is finally available! Please check out "Ben Has Autism, Ben Is Awesome" from Jason & Nordic Publishers. I hope this picture book, beautifully illustrated by Rebecca Rivard, will be a useful tool to help parents start talking about autism with their children on the spectrum, as well as to help typical kids better understand their ASD peers. Order a copy for yourself or for your local school's library!

Friday, October 28, 2011

In Which We Pretend Ryan is Typical

For the last week or so, Ryan has been nudged into typical first grade. An aide has been taking him to an inclusion class in the main building for 45 minutes a day for math class.

So far, it's not going well.

Ryan's school experience up to this point has been very different. He's been in a room with no more than seven other kids and with at least three adults at all times. In his regular class each student has his own Individualized Educational Plan and works on his own lessons at a little table with a teacher or aide sitting next to him to keep him on track.

Now, his math class has one teacher and about 20 kids. All the kids sit at their own desks and face the teacher. Mrs. W. talks and the kids are expected to listen.

And among these tidy desks and orderly, forward-facing, listening children, there's my kid. Scripting away. Reciting the cannon of Mo Willems or his favorite episode of Fraggle Rock, eyes on the ceiling, laughing like a maniac. An aide sits with him and tries to keep him focused on math (and from being a distraction to the other kids). But, as his teacher wrote in his notebook, "We're going to keep trying. This is going to take patience."

The bigger problem, as far as I'm concerned, is that while Ryan is getting used to any major transition, he turns inward more and more throughout the day. More scripting at home, more strange behavior, ever harder to get him to visit our world.

And since this math class is not part of Ryan's IEP, there is no dedicated staff member assigned to take him there every day, so when the school is short-staffed, they just don't take him. The lack of consistency makes the transition infinitely more difficult. More scripting, more throwing flashlights out the window, more accidents, more grunting instead of speaking.

So next week I have to meet with someone from the Board of Education to work on updating Ryan's IEP so that the school will have to provide an aide to bring him to math class every day. If this can't happen, I'd rather sacrifice the educational opportunity of joining the typical kids for math than sacrifice the consistent routine. Ryan can get used to a new routine, but he can't adapt to a sudden lack of routine.

At Ryan's current level of distraction, I don't know how we're going to get him through Mrs. W's big typical-kid homework assignment that's due Monday. He came home with this 13-page "My Book About Me" packet, in which he's supposed to answer questions like "My birthday is in ____" and draw pictures of his family and his house and his favorite food. I imagine a typical child could bang this out in half an hour, but it could take us that long to get Ryan to focus on writing his name. And this is a child who has yet to answer a "What is your favorite ____" question. Ask him what his favorite animal is, he'll have no idea what to say. Ask him which of the two objects he's holding is his favorite, he still won't answer.

It's going to be a long weekend.

Monday, October 24, 2011

Quack of the Month: Brain Gym

Earlier this month, a friend of mine was appalled to discover that her daughters' preschool had spent her tuition dollars having its teachers certified to teach a form of applied kinesiology known as Brain Gym. Promoters of Brain Gym say it is beneficial for all people of all ages, and many believe it has special benefits to people with special needs, including autism. Cue my investigation on the topic.

This child is doing a "Cross Crawl"

Like many pseudoscientific cure-alls, Brain Gym starts from a sensible idea, and then it goes waaaay too far. The sensible starting idea is that exercising the body is good for the brain, and that including physical activity in a child's day improves his or her academic performance. I'm down with that.

Where they go too far is their assertion that their set of 26 specific postures and movements will help develop neural pathways to connect the right and left hemispheres of the brain and increase the flow of "electromagnetic energy" throughout the body. For example, did you know there are brain buttons just under your collar bone? This video will show you how to push them to, um, turn on your brain. Stick around for the whole video and the lovely Australian lady will also demonstrate how to do an Energy Yawn.

For one thing, that whole left brain/right brain separation idea is a myth. You use neurons from all over your head at the same time.

Second, no truly scientific studies have been done on Brain Gym; the studies that Brain Gym's founders cite as proof of their accomplishments were self-published and not replicated by impartial researchers. As it says on the Brain Gym website's FAQ page, "The work is based upon empirical experience rather than neurological research." I have seen no proof that these specific exercises have any more benefit than playing tag or jumping rope.

Now, I don't know that Brain Gym would do a kid any harm, aside from filling her head with pseudoscience and misleading her about how her brain actually works. But Brain Gym is a business. A business that thrives on licensing fees from thousands of schools and preschools and therapy providers. According to a local instructor with whom I emailed, practitioners are sub-licensed to teach Brain Gym (at a cost of $200/year) and return 10% of their profits to the Educational Kinesiology Foundation (Edu K). The licensing process involves a significant investment of time and money: 200 hours of coursework (at around $20 per hour, this comes to thousands of dollars), six private consultations from a licensed Brain Gym instructor, and 15 case studies.

I'm exhausted just thinking about it.

Perhaps it's time for an Energy Yawn.



Recommended further reading: The Skeptic's Dictionary

Thursday, October 20, 2011

Making friends is hard.


Two kids I had never seen before were kicking a soccer ball around the patio behind my building. When Ryan noticed them he ran straight for them. Wow, I thought, he's going to play with new kids!

This is when I realized how many small steps Ryan still needs to master in order to successfully initiate playing with other children:

1) First, approach the children. Stand close enough to them so they can hear you when you speak, but not so close that it's creepy. Do not run headlong into one of the kids so you bounce off her and fall on the ground.

2) When standing at an appropriate distance, look at the children and say, "Hi, I'm Ryan. What's your name?" We practiced this several times, and the "what's your name" part mostly came out; the girl's name is Adrianna - we have no idea what to call her little brother.

3) Ask to join the game. Do not just ask someone's name and then stare.

4) When the children explain what game they are playing, figure out how to incorporate yourself into that game. When the kids say they're playing soccer, you may be assigned to a team, and will be tasked with either kicking the ball toward a goal or defending a goal. It is not appropriate to step back from the kids and act out that part of Mickey Mouse Clubhouse when Goofy is "practicing soccer" with a song and dance.

5) Play with the kids. If you ask to play with the other children and they say yes, they expect you will actually play with them; they do not expect you to wander off without further comment.


We have a few things to work on.

I will try to focus on the fact that Ryan was interested in playing with these kids - so interested that he actually asked me, "What's his name?" That was a big ol' first. I suppose that's the real Step One: noticing that other kids are playing and having the desire to join them. Now that we have that one, perhaps we can start on some of those five pesky follow-up details.

Tuesday, October 11, 2011

Two new reasons I'm proud of my kid

Ryan's outgrowing his autism-only classroom. He needs typical kid models. He needs to interact with typical kids. He needs to get out of that creepy little room.

Starting next week, Ryan and an aide will go to an inclusion class at the school's main building for math class every day. He will also join that class for library time, which will provide even more opportunities for social interaction. I'm thrilled - and all that is one new reason I'm proud of my kid.

The other reason? My kid mouthed off at his teacher.

Mrs. B. told me about this in the context of "When he wants to, he can really talk." Apparently she was trying to get him to do something he didn't want to do, he got mad, and he shouted at her, "You're a stupidhead!"

At first when Mrs. B. told me this, I was appalled. I didn't even know that he knew such a word! But upon further reflection, I'm delighted that Ryan chose to use words to express his feelings. He didn't hurl himself against a wall. He didn't throw things. He didn't cry and scream. He used (naughty) language, addressed to the person who was making him angry.

It has taken three years of therapies to get Ryan to this day: able to express himself with words and without self-injury, on the brink of mainstreaming.

He's going to be ok.

He is ok.

He's more than ok.

Monday, October 10, 2011

How to Play: Stupid Ball™

Ryan's favorite game is an activity of his own invention that Stu and I have dubbed Stupid Ball™. Here's how you play:

1) Select a toy that has a lot of (preferably small) pieces. For this example we will use 2" long rubbery bananas.

2) Note how many items you have. In our example, there are 24 bananas.

3) Hide your bananas all over the house. You may hide them in groups of no more than 4 items in a single location. You can reuse some hiding places you have used before, but try to get creative for at least two of your groupings.

4) Search for all the bananas.

5) Forget where you hid half of them.

6) Get frustrated. Cry. Have a tantrum. This is the most important step. Do not skimp here - be dramatic about it.

7) Get your parents to help you find the remaining bananas. "Helping" means finding all the bananas while you have a fit. Do not accept any results shy of perfection: finding only some (or even all but one) of the bananas is unacceptable.

8) When all items have been gathered, repeat step 3. Game can be played as many times as you wish.

Monday, October 3, 2011

Review and Give-Away: Seeing Ezra


I recently had the pleasure of reading Seeing Ezra: A Mother's Story of Autism, Unconditional Love, and the Meaning of Normal by Kerry Cohen. Through Cohen's parenting memoir, we meet Ezra, a little boy on the spectrum who will remind you quite a bit of Ryan - cute, charming, armed with a bucket of animals and letters. Like this blog, Cohen's story is less about her son and his challenges than it is about her - as a mother, as a wife, as a woman - learning to understand and accept her sudden recruitment into the autism army. It's a quick and pleasant read.

I found myself making little check marks in the margins as I found Cohen putting words to feelings I had experienced over the last couple of years. Frustration at sitting outside a party: check. Anger at strangers giving unsolicited advice and unnecessary pity: check. Seeking an escape route from this strange new life? Father with Aspie tendencies? Husband depressed because he wants to move? Check check check.

Cohen has few kind words for the parade of professionals responsible for conducting diagnostic testing; how can someone who has never met her son pretend to know anything about him without treating him like a data point, she argues. Seeing Ezra chronicles her internal journey to a place where she feels comfortable enough with herself to stand up to all the therapists who want to make her son "normal." She bristles at the idea that something must be done to fix her son, because she has never seen him as broken. He is perfectly Ezra.

I recommend Seeing Ezra, especially to ASD parents and to therapists who may need to be reminded that the kids they are working with are, first and foremost, kids - kids who like to play and laugh and who need nothing more than love.

Thanks to the generous folks at Seal Press, The Ryan Files will be giving away a copy of Seeing Ezra to one lucky reader. To enter, go to my Facebook page and write "Love is normal" on the wall. I will select a winner at random on October 18th. Good luck!

Friday, September 30, 2011

Princess Jane

Ryan and Jane are classmates for the third year in a row. When we first met Jane, in preschool, she had no language. No words at all. She was like a wild animal - all grunting and shrieking and pushing her way through the world. But if you could get her to hold still for a moment, you could tell she was a sweet, lovable little person.

On Wednesday I brought cupcakes to Ryan's class to share for his birthday. When I walked into the classroom, Jane's eyes lit up. She ran over to me and threw her arms around me.

"Hi Jane! I'm glad to see you, too!" I said.

She pointed at the door. "Kadeen!" she announced. Kadeen was their teacher last year.

"Yes," I replied, "the last time I saw you was in Kadeen's class."

I read the kids a couple of stories, then broke out the cupcakes. The cupcake liners had little pumpkins on them.

Jane smiled and pointed excitedly at her cupcake. "Halloween!" she announced.

"Yes, those pumpkins remind me of Halloween, too. What are you going to be for Halloween?"

Jane pointed at her shirt. "Pih. Pih."

I wasn't sure what she was going for. I took a guess. "Something pink?"

She shook her head a little and tried again.

"Pih. Pih. Princess."

"Oh! A princess! With a crown?"

The teacher informed me that Jane was going to be having a Halloween party.

"Halloween party!" Jane agreed. She made a gesture that I think indicated she wanted me to come to her party.

Then she tugged at my sleeve and pointed at one of the boys in the class while asking "Halloween?" She wanted me to ask this boy what he was going to dress up as for Halloween.

I relayed the message. "Hey Craig, Jane wants to know what you're going to be for Halloween."

"Uh, a pumpkin," he replied.

Jane tapped my arm again and pointed to a different boy. "Halloween?"

She had me ask five different boys about their Halloween costume plans. The three that came up with any answer at all all said they would be pumpkins; I think that was the first Halloween-related word that came to their minds.

"Halloween party," Jane reminded me. "Princess."

I am so proud of Jane. She has worked so hard over the last two years, and has come so far. She has words, but more importantly, she has a newfound connection to other people.

I can't wait to see this beautiful princess, attended by her court full of pumpkins.

Wednesday, September 28, 2011

I can't say No to a bunny.

The night before Ryan's sixth birthday, we assumed our regular bedtime positions: Ryan lying under the covers, me lying on top of the blanket holding two books. He chose which of the books I would read first - a strange story of little elves who make soup out of dirty socks. A few pages from the end, Ryan took the book from me. He never does this. He held the book over his head, studying the pictures - a perfectly normal thing to do, but totally unexpected for Ryan. He turned the pages, I kept reading.

When I held up the next book, Don't Let the Pigeon Stay Up Late, Ryan asked, "Can I read it?" Totally casually, like, you know, I always ask to read the book myself at bedtime.

Knock yourself out, kid.

So Ryan held the book over his head and "read" the whole story out loud from memory while I provided the requisite Greek chorus responses ("No! Go to bed, Pigeon!"). When he got to the part where the pigeon says, "My bunny wants to stay up, too," my heart melted.
It is very hard to say no to a bunny.

At the end of the story, Ryan handed me the book. He still looked pretty alert, so I asked if he wanted one last story. He looked me in the eye and said, "You can turn off the light."

I think my baby is growing up.

Happy 6th!

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Happy birthday, Ryan!  Good job decorating that cake!








Friday, September 23, 2011

Almost Six

Ryan will turn six next week. I don't think he knows.

We've certainly talked about it. We've showed him the little picture of a birthday cake on his calendar. We've tried to coach him to answer the questions "How old are you?" and "How old will you be on your birthday?" though without success.

Stu keeps reminding me that Ryan's agenda rarely has anything to do with ours, so I shouldn't get upset that we've never had the typical my-birthday-is-coming experience. No anticipation. No begging for presents. No expression of pride in being a year older.

We used to go through the motions of having a party at the ballpit with the kids from his playgroup, and while I guess he enjoyed climbing and eating cake, it's not like he ever played with his guests. Last year we had a couple of kids over for Ryan to ignore, and a family gathering from which he hid.

This year, we've kind of given up, and we're only having adult family members over; Ryan will not care. Maybe he'll enjoy his presents, maybe he'll ignore them. Maybe he will play with his grandparents and aunt and uncle, maybe he will tell them to go away and he'll play in his closet.

He will not be disappointed.

But I will be.

I keep reminding myself that Ryan is happy - the ridiculous grin on his face when he's playing by himself should reassure me. But part of me still wants to impose my agenda on him.

I want him to get excited about his birthday.

I want him to dictate a list of friends to invite to a superhero-themed party.

I want him to tell strangers "I'm gonna be SIX on Wednesday!"

I want him to ask us for some super-special toy that I don't know how to track down.

I want him to get so excited about his birthday cake that he sticks his finger in it and messes up the frosting.

On his first birthday, he totally got it.
He's my baby. My only baby. And I want to celebrate.

But mostly I want him to care about the same things every typical almost-six-year-old cares about.



Maybe some balloons will help.




Monday, September 19, 2011

Quack of the Month: Devi S. Nambudripad

There are a lot of snake oil salesmen in the autism world. Parents desperate to do something to help their ASD children are easy prey for peddlers of pseudo-scientific "treatments" and "cures."

So in the first installment of what I imagine will be an ongoing series on this blog, I present September 2011's Quack of the Month, Devi S. Nambudripad and her NAET (Nambudripad's Allergy Elimination Techniques) system.


"Quack quack!"

In her 1999 book, Say Good-Bye to Allergy-Related Autism, Dr. Nambudripad argues that autistic symptoms are the result of a build-up of allergens in a person's developing brain in his first three years of life. This is not an uncommon line of thought - think of how Ryan's brain interprets wheat gluten as an opiate.

But then she goes too far.

Nambudripad's method for diagnosing and treating "allergy-related autism" is a bit different than just eliminating problem foods from one's diet. Her primary diagnostic method is a form of applied kinesiology: the patient holds various items in his hand and the practitioner pushes on his arm to test muscle resistance. If the arm offers little resistance, she says, the fault lies in the specific substance held in the patient's hand. So if my arm shows weakness when I'm holding a carrot, I must be allergic to the carrot.

As absurd as this sounds, it gets weirder: if the patient is a young child or is somehow incapacitated, a SURROGATE may be used for the muscle test! The practitioner tests the surrogate while the surrogate is touching the patient, and the patient's energy flowing through the surrogate will make the surrogate's arm weak in the presence of whatever the patient is allergic to.

Wow.

The treatment is derived in a similar fashion. The patient holds a dietary supplement in one hand while the practitioner pulls the other arm, and the degree of muscle weakness shows how many supplements should be taken. The NAET online store has many herbal preparations with names like "Allergy Help Plus"  and "Pain Balance and More," each for around $25 per bottle. The average patient, according to the NAET website, requires 15-25 "treatments." Figure that your insurance probably won't cover this sort of thing, and you're looking at a hefty price tag.

Surely, if this were a viable method for treating autism (and pain! menopause! food allergies! eosinophilic esophagitis! heart palpitations! glaucoma in dogs! ulcerative colitis! psychic intuition!!! - seriously, check out the patient testimonials), I'm sure the wider medical community would have picked up on this sometime in the last 12 years, and researchers would have published their findings in journals more reputable than The Journal of NAET, Energetics and Complementary Medicine. Surely there wouldn't be such a long thread about it in the Museum of Hoaxes.

I'm going to call BS on this one.

Monday, September 12, 2011

Then again, maybe not.

Some days are just too hard.

How many ways can I say "I don't know where your yellow and green shovel is because you buried it at the beach last week and lost it."

How many ways can I say "What did you think would happen when you dropped your puzzle piece in the crack between the patio squares? Did you really think I'd be able to fish it out?"

How many mornings will I be dragging my screaming, crying child down to the school bus, hoisting his kicking, twisting body up the steps?

There are days when it's really hard to stay hopeful.

Really hard.

When I feel like I'd be totally justified for leaving my kid at the park and heading home alone. When I feel like nobody could blame me for giving up. When I actually allow myself to ponder the big What If.

What If I had a typical kid? What If we just didn't have to deal with this crap?

I count the hours til bedtime, watch a funny movie, and hope that tomorrow morning will be better.

And then I drag my screaming, crying child down to the school bus again.

Thursday, September 8, 2011

Perhaps he's starting to get it.

"The animals can not watch Dragon Tales."

Ryan was calm when he informed me of this. It was a statement of fact - there was not a hint of sadness or regret in his voice.

Perhaps he's starting to get it.

His search for lost toys continues, though his moments of lost-toy-induced panic seem to have become an emotional placeholder for any moment of stress, frustration, or disappointment. It's like a (very very long) shorthand for "I'm upset." The panics seem to be becoming less about the hope of ever retrieving the toys and more about expressing an emotional state.

Perhaps he's starting to get it.

And in a major first, last night he stopped me from reading him a bedtime story and insisted that Daddy take over.

We are turning a corner.

Tuesday, August 30, 2011

In which Grandma goes all Mama Bear

I got to spend several hours of Hurricane Irene blissfully doped up on prescription muscle relaxants.

Last Saturday I sustained my first real ("real" meaning during a game) roller derby injury: a wee little concussion. There was a pile-up, I don't remember how it happened, and I ended up as the filling in a skater sandwich.

So I have been resting. You know, as much as one can when home with a five-year-old all day.

After several days my head was feeling worse, not better, so I called my mom to watch Ryan so I could see a doctor. My mom insisted on driving me to my appointment, even though I had been driving just fine all week, which meant Ryan had to come along too.

You will be shocked to hear that Ryan had no interest in waiting around a medical building for two hours. Or that he had difficulty with the transition from sitting next to me to being dragged off to the cafeteria for lunch by his Grandma.

I was not there, but I imagine there were the usual theatrics: crying, yelling, throwing himself on the floor in protest. My mom ordered him to get up; he refused. She got stern with him; he was unimpressed.

Then an old man took the liberty of yelling at Ryan. "You get up right now! Raaagh! Raaaagh! Get off my lawn!"*

That's when Grandma whipped around and got all Mama Bear on his ass. Beautifully-manicured claws came out.

"You shut up!" she shouted at the old man. "First of all, you have no business yelling at this child you don't know. Second, you're yelling at a young autistic boy who...:

"Oh," the man interjected, suddenly apologetic, "I didn't know."

"Well maybe you should think before you start yelling at a stranger's kid."

My mom got some lunch into Ryan, and after that they had a lovely couple of hours waiting for me.

Nobody yells at my baby but me. And his Grandma.



*Like I said, I wasn't there for this part, so think of this as a dramatic reenactment.


Tuesday, August 23, 2011

He Talks!

The boy doesn't want to play with me. Doesn't want me around him. Doesn't want me in the same room.

He's sassy, but he's using language to sass me, so I'm going along with it. To an extent.

When I suggested we might want to leave the house and go to the park, Ryan pointed sternly at my sewing machine and ordered, "You can sit back down in the chair and get back to that."

When I asked if I could work on his puzzle with him, Ryan glared at me and said, "Mommy, you can go over there." I'm not sure where "there" was, but it was certainly nowhere near the puzzle.

And the other day, when I annoyed him by telling him not to dump all the water out of the neighbor's kiddie pool, he told me, "You can sit down over there." When I didn't leave, he started to walk toward the street. When I yelled at him, he turned around and asked, "What's the problem?" Like, all casually, like he asks questions all the time. I don't care that it was a script, it was used perfectly.


And on those rare occasions when I'm not totally unwanted, Ryan's using words to communicate with me. Yesterday, after an hour of painting with water on a slate wall, Ryan stood back and asked, "You like it, Mommy?"

Yes, baby, yes I do.

Tuesday, August 16, 2011

Shameless promotion

For those of you in the great NYC area, I invite you to check out Suburbia Roller Derby's summer season championship game this Saturday. And it's a double-header! It's a fun night out, and you might even see me get knocked on my ass...

Link



Saturday, August 13, 2011

Got to Get the Butterfly Net!

Life has become a never-ending search for lost toys.

The Frog is still missing two parts, of course. Black-and-white cow has not yet emerged from that deadly lawnmower accident. Yellow Chick disappeared on the bus. The little green ball he had for all of 10 seconds is still stuck between the tiles on our patio.

And now his favorite plastic giraffe has drown at the bottom of a storm drain.

(He seems not to have noticed that two of his Dinosaur Train toys went missing a few weeks ago, or that we never recovered the stuffed dog he threw out the school bus window. And I'm sure as hell not going to be the one to remind him.)

The giraffe went down the storm drain moments after I told him not to drop his toys there. Aside from the predictable crying that ensued, Ryan hatched a couple of plans for how we could rescue the giraffe. His first idea (my favorite) involved scissors and a diving mask. Eventually he decided a butterfly net would be the tool of choice.

Ryan refuses to accept that all these toys are gone forever. Every day for the last few weeks has been filled with episodes of anguished mourning for his lost plastic friends, and no amount of rational explanation on my part can help.

Thursday, August 11, 2011

The Encyclopedia Ryanica, Vol. 1

Ryan may not be able to tell you what he did at school today or ask why the sky is blue, but he is a font of factual information. Whenever one of a handful of topics is mentioned, Ryan will tell you what he believes is most important for you to know; as he repeats these lessons with great frequency and consistency, it seems only right to share them with you here.

Here is Everything You Need to Know, according to Ryan:

On stop signs:
"Stop sign is a octagon, it has eight sides and four letters, S-T-O-P."

On zebras and tigers:
"It has stripes."

On milk:
"Cows love it."

On cows:
"Cows love milk."

On bananas:
"Monkeys love them. Bananas are yellow. They have stickers on them."

On butterflies:
"They got to turn into a caterpillar, turn into a cocoon."

On the letter C*:
"It's got to go between the B and the D."
* similar information also available on most other letters and numbers






Tuesday, August 9, 2011

Kvelling

Ryan is working with Chrissy right now. Magical, omnipotent Chrissy.

Chrissy is asking him questions, and by God, Ryan is answering them.

How do you get to New York City? On the train!

How do you get to Florida? On an airplane!

What do you use to call Grandma? A telephone!

What picks up the garbage? A truck!

What do you need to turn on when it's too dark? The lamp!

What do you need to turn on when it's too hot? A fan!

Meanwhile, they're playing a sorting game that involves grouping little toys in various ways. Chrissy is finding challenging ways for them to clean up, like "Give me two things that live in the sea and two animals that live on a farm," and Ryan is keeping up with her perfectly.

Then Chrissy says, "Give me the crab, the horse, the truck, and the bread."

Ryan pauses, then asks her, "What was the first one?"


I'm in tears I'm so happy. When the pieces come together, the picture is indescribably beautiful.


Friday, August 5, 2011

The Frog is Missing Two Parts!

"The frog is missing two parts!!!" 

This shocking realization pops up seemingly out of nowhere every few days. And each time, it comes with emotion as raw as the first time Ryan made that horrible discovery.

A few weeks ago, Ryan threw his favorite plastic frog, a rubber ducky, and some sort of toy dog out the window of the school bus on the way home. When the bus pulled up in front of my house, Ryan was sobbing and in great distress. The bus driver told me that he had thrown toys out the window at some point, but neither she nor her assistant knew where or when this had happened. I asked her to describe the route she had taken so I could trace it and perhaps track down the missing animals, but we hit a language barrier.

Miraculously, after much driving around, we found the duck and most of the frog. The duck was in one piece. The frog, which had been broken to begin with (it had a noise-making thingy, and when the non-replaceable battery started to die, making the frog whine nonstop, I eviscerated it, leaving a big hole in the bottom, which I patched with packing tape), but now it was more broken. The poor thing had been hit by cars and lost half an inch of its rear end - I think this section once housed the frog's speaker.


A stickler for completion, Ryan considered our search and rescue mission an utter failure. We hadn't found the dog, and the frog was now missing its "tail." He cried pitifully. I told him that's what he gets for throwing his toys out the window of a moving bus on a busy street.

Now, every few days, whether or not the plastic frog is anywhere near him, Ryan will cry, panicked, "The frog is missing two parts! The frog's tail is in the street! WE GOT TO FIND IT!" Once I helped him fix the frog by plugging its holes with green Play-Doh, but all Ryan saw was a broken frog with Play-Doh stuck to it; this didn't help.

The boy has a long memory. Early this summer, he brought some animals out to the back yard to play with, and he accidentally left behind a Lego cow. A few days later, I discovered the cow had been run over by a lawnmower. There were several pieces left, but not enough to make a whole cow.

Now, every few days, Ryan will wail, distraught, that "the white cow with black spots is missing," and we've "got to find it." I explain that the lawnmower ate it and that he should be more careful with his toys. He cries with the intensity of a fresh wound.

I don't know if Ryan's sense of time is typical of a young child or if it's more characteristic of a child on the spectrum. Maybe he's a grudge-holder like his mother - sometimes I'll find myself ruminating on a 15-years-past slight and I'll get almost as angry as if I had just been wronged again.

Maybe he's working through the concept of permanent loss. Two full years after Dragon Tales went off the air, Ryan is still asking to watch it and play its related computer games. I refuse to rent the series on DVD because then he'll think I can pull the old games out of the air and I'll never hear the end of it. I'm trying to use Dragon Tales as a lesson in death.

Perhaps the frog will become a lesson in permanent injury?

Wednesday, August 3, 2011

We got to save the peacock!

A peacock has escaped from the Central Park Zoo.


I made the mistake of reporting this news to Ryan this morning while we were getting ready for school.

Now Ryan thinks we're on a Nick Jr.-style animal rescue mission.

"We got to FIND the peacock!"

OK, I say. We can look for the peacock after school.

"We got to go to the zoo! We got to SAVE the peacock!"

I explain that the peacock is wandering around the city somewhere - it may even have walked all the way up to our neighborhood, right where the school bus is about to pull up, so why don't we go look for it in front of our building right now?

"We got to go to the zoo and find the peacock!"

So apparently I'm picking him up from school this afternoon and driving straight to the Bronx Zoo. There's an animal in trouble somewhere...

Friday, July 29, 2011

Goose-Geese

Like most little boys, Ryan loves to chase geese. Unlike most little boys, Ryan chases geese with a clear goal.


The goal is to drive the geese into the water. The plan of attack is to separate the flock, picking off a couple of birds at a time to shepherd into the pond, then circling back for another pass, and another. He is very efficient at goose herding.

The other day, Ryan insisted on finding some geese to chase. "We got to chase the goose-geese!" We went to a park with a large pond where you can always find a flock of no fewer than 100 geese, and Ryan got down to business. When he had successfully herded all the geese into the water, rather than celebrating his success, he got pissed off that there were no more birds to chase.

He ordered the geese to come out of the water; they ignored him. Then he asked me to get the goose-geese back on land. I told him I have no control over birds, and that I can't make a goose do something it doesn't want to do; this was unsatisfactory.

There were also a few ducks in the water, including cute little ducklings, in which Ryan had zero interest. Ryan decided that the geese should be on this side of the water and the ducks should be on that side. He told them the plan, but they just swam wherever they wanted.

Boyfriend was getting genuinely frustrated and mad at the disobedient birds. I suggested that the geese might be scared of him, since all their encounters involve him chasing them, and that maybe we should hang back and ignore them for a while so they wouldn't be scared anymore. Amazingly, this worked. As soon as the geese sensed Ryan was not about to chase them, they emerged from the water.

Then he chased them right back in.

And then he got mad that the geese were in the water...

Tuesday, July 19, 2011

How to explain autism to a young child

The best geared-for-kids explanation about autism I've ever read comes from the blog of Mom-NOS. She describes a world in which neurotypical brains are toasters, and autistic brains are hair dryers. In this world, the toaster-brained people have decided that the most important thing one can do is to make toast; those with hair dryer brains can try to make toast, but it will take a long time, and the toast will always look wrong. But there are some things a hair dryer can do far better than a toaster... It's a brilliant analogy - take a minute to read it in her words. I promise you it's worth it.

But if you don't want to launch into a whole long analogy-based story, here are some talking points for teaching a typically-developing child about his friend with autism:

- ____ has autism. That means his brain is wired a little differently than yours.

- There are some things that are harder for him, like talking, playing with other kids, or changing his routine. He's still smart, and he's still a good kid, he just needs a little extra help with those things.

- There are some things that are easier for him, like memorizing stories or hearing/seeing etc.

- Autism is something you're born with. You can't catch it.

- In most ways, we are all the same. We're all human, we all have feelings, we all love the people in our lives, we like to play with sand, we like eating ice cream...


- But every one of us is unique. Be proud of the ways in which you are different from everyone else in the world, and respect others' differences.

- To be a better friend to a kid with autism, be patient. Use fewer words when you speak, and give him extra time to answer you. Accept him the way he is. And try not to take it personally if he doesn't want to play the way you want him to.

Monday, July 18, 2011

You have to say something.

Ryan was playing with his cousins at a big extended-family hoohah at my parents' house this weekend. Miller is 4, Ryan is 5, Dylan is 6. They went to the park together, played in the sprinkler, suckered us into a trip to the ice cream truck. A good day.

The boys spent a solid hour playing with a bucket of Moon Sand. I don't know what this crap is made of, but it somehow maintains the perfect level of moisture for building - we've had this bucket for a couple of years, and the sand never dries out. I'm sure it's somehow lethal.

Ryan, Miller, and Dylan redecorate the patio.

At one point during this hour, Stu and I were supervising. Dylan was using a medicine cup to make inch-high sandcastles. He announced that he was building a row of 10 of them. Ryan didn't get the memo, and he reached over, took one of the little castles, and crumbled it. Dylan got understandably annoyed.

"Ryan, stop it!"

I told Ryan to leave Dylan's castles alone. Stu tried to reassure Dylan that there was plenty of sand for everyone.

Ryan broke another castle. And another. I told Ryan to keep his hands to himself.

"Ryan broke my sand!" Dylan complained to Stu and me.
 
Despite our efforts, Ryan couldn't grasp the concept of "my sand" vs. "your sand." Dylan got understandably pissed off.

"You can't just break other people's things, Ryan!" he shouted.

"You're being mean," Miller said to Ryan, rallying to Dylan's defense.

"He's bad," Dylan told Miller. "Let's just ignore him.  Let's not even talk to him."

All three boys continued playing with sand.

Stu whispered to me, "You have to say something," but I didn't know what to say, or who he thought I needed to say something to. 

Dylan and Miller were being perfectly age-appropriate, but Ryan was unable to follow the accepted rules for how to play with sand, and they called him out on it. They were right: you can't just knock down other kids' sand castles; we've had this conversation before. Ryan didn't understand that he had done anything wrong, but I couldn't handle hearing NT kids call my kid "mean" and "bad" because of it, or saying "let's not even talk to him."

So I told Ryan to play with his own sand and leave other kids' castles alone.

Exasperated, Miller ranted at Ryan, "She doesn't need to tell you that 100 times!"

At this point, if I had been thinking rationally, I would have told Miller to mind his business. But I was choking back tears at this point. I sat on the patio near Ryan so I could intervene if he reached for Dylan's sand again.

After a few minutes, Dylan stared at me and asked me, "Why are you still here?"

It was just too much for me to explain why I was still on the patio. That yes, Ryan does need to be told things 100 times. That Ryan's not trying to be mean or bad, but he doesn't yet know how to play with other kids appropriately.

I made a hasty, tearful exit from the party.

When I later explained to my cousins what had made me so upset, Miller and Dylan's mothers said they were going to talk to the boys and try to teach them about autism. Miller's mom wrote to me, "I welcome your guidance on how to best get Miller to understand there are differences between him and Ryan. It's really new territory for me."

I was thrilled to hear this - these are truly the words every ASD parent wants to hear. And these boys are stuck with each other for life, so this conversation had to happen at some point. I've asked my cousins to consider writing a follow-up guest about how those conversations go. (No pressure, ladies.)

So, how can a parent explain autism to her young child? To be continued...

Wednesday, July 13, 2011

Praying for the Parents, Preparing for the Worst

In local news, a nine-year-old boy in Brooklyn had asked to walk home from day camp for the first time, and his mother was waiting for him seven blocks from camp. Somewhere on those seven blocks, he was abducted. Police and the entire Hasidic community of Borough Park spent two days searching for him.

Today, his dismembered remains were found. If you want the gruesome details, read this article - it's too upsetting for me to repeat.

My thoughts, of course, are with little Leiby Kletzky's family. I can't imagine how one goes on with her life after such a tragedy.

The media are reporting that the Leiby had autism. This makes me wonder if autism made him more susceptible to abduction. Was he less able than a typical child to sense that the assailant he encountered was dangerous because of his social deficits? Was he more trusting? Did he get distracted on his way home?

Kids with autism are prone to wandering off (they call this "elopement" but it's not very romantic) and often have a limited sense of danger, so abduction is a very real concern. There are special techniques to teach ASD children how to handle stranger danger, but I'm not sure who offers this training.

Here are some resources worth looking into to protect your ASD child:

- About.com's tips to reduce the danger to your child.
- ID jewelery (though I can't imagine my kid actually keeping an ID bracelet on.)
- Personal tracking devices: see eSpecialNeeds, Amber Alert GPS, or Care Trak.
- Project Lifesaver's tracking system and training for first responders

Tuesday, July 12, 2011

Please, No More Acronyms

It started with the drain.

A couple of weeks ago, Ryan became obsessed with yanking the drain stopper out of the bathroom sink. We kept telling him to leave the drain alone, but that made him all the more insistent that the stopper had to come out.

Then, Ryan started closing the drain tightly before washing his hands. He would let the sink fill with soapy water while he washed, and then walk away from the full sink without allowing the water to drain out.

Last week, while doing things that had nothing to do with the bathroom (as far as I could tell), Ryan started a new weird behavior: he would dash out of the room, run to the bathroom, slam the toilet lid closed, and run back to finish whatever he had been doing. Sometimes he would order Stu or me to stop whatever we were doing and open the toilet so he could close it.

These orders and behaviors later extended to both our bathrooms. As it stands now, at seemingly-random times, Ryan will get agitated and insist that both toilets, both sink drains, and both bathroom doors must be closed. And at other times, he won't care at all about these things - if he's actually using the bathroom, it's just as likely that when he's done he'll leave the toilet and door open (but the drain still stays shut).

And over the last couple of days, Ryan has started throwing things into the toilet before slamming the lid - a plastic box of wet wipes, his own foot...

So I've started reading up on pediatric obsessive-compulsive disorder. It seems that OCD and ASDs are often comorbid. One interesting note, according to Dr. James Copland: "People with OCD usually feel uncomfortable with their symptoms, and would like to be rid of them, whereas people with ASD usually are not bothered by their obsessions, and in fact may embrace them."

The treatment options are behavior therapy (which Ryan already gets at school), and/or SSRIs. Oh, the irony - fetal exposure to SSRIs may cause a need for later use of SSRIs... I guess this makes sense: if a fetus is discouraged from developing a normal way of shuttling seratonin around the brain, it will develop into a child that can not deal with seratonin normally.

I really, really hope Ryan isn't displaying symptoms of OCD. I don't need any more alphabet soup in this house.

Monday, July 11, 2011

An ASD Mother's Wish

I wish I could crawl around inside your head
so I could finally understand.

I wish you could remember to use the words you know
and that we've drilled you on
time
after time
after freaking time.

I wish the world wasn't so painful for you.

I wish you could make a friend
a real friend
your own age.

I wish you could tell me about your day.

I wish everyone you'll ever meet
will see you as I see you,
as a compassionate
loving
sweet
generous
beautiful boy.

Tuesday, July 5, 2011

Prenatal Antidepressants and Autism

When I'm working around the house, I'll often have crappy daytime tv on for background noise. The ads assume anyone home during the day is unemployed and/or disabled: train to be an ultrasound technician, get cash for your structured settlement, sign up for a Medicare Advantage plan, call a personal injury attorney.
I've falen...and I can't get up!

 Lately, they've started playing ads that speak to me: call a lawyer if you took antidepressants during pregnancy and your child suffered birth defects. These ads, and the spam that fills my inbox, say taking Zoloft has been linked to heart defects, persistent pulmonary hypertension of the newborn, neural tube defect, craniosynostosis, clubfoot, cleft palate, limb defects, and anal atresia.

Autism is not one of the conditions in the ads, but I have always wondered what effect my taking antidepressants during pregnancy had on Ryan's development.

When I was pregnant, my doctor told me the general medical consensus was that the benefit of treating the mother's depression outweighed any known risks of fetal exposure to SSRIs.

Over the last five years, several studies have pointed to a possible connection between the use of SSRIs in pregnancy and the development of autism. The most recent, and most damning, came this week in the Archives of General Psychology. That study suggested that use of SSRIs during pregnancy - especially during the first trimester - can double or even triple the chances a baby will be diagnosed with an autism spectrum disorder. And it further noted that "No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors," meaning it's likely that the problem lies in the drugs, not in the underlying condition that may or may not lead to the use of drugs.

That said, the vast majority of children with autism were not exposed to SSRIs in utero, and the vast majority of children exposed to SSRIs in utero do not go on to develop autism. There's a complicated mix of genetic and environmental factors at play here, and I look forward to the follow-up studies.

I believe I made the right decision to continue to treat my depression during my pregnancy. According to the American Pregnancy Association,
Depression that is not treated can have potential dangerous risks to the mother and baby. Untreated depression can lead to poor nutrition, drinking, smoking, and suicidal behavior, which can then cause premature birth, low birth weight, and developmental problems. A woman who is depressed often does not have the strength or desire to adequately care for herself or her developing baby. Babies born to mothers who are depressed may also be less active, show less attention and are more irritable and agitated than babies born to moms who are not depressed. This is why getting the right help is so important for both mom and baby.
Great risks, indeed.

I must keep reminding myself of those risks so I don't fall into the tempting spiral of self-blame for my child's challenges.

Friday, July 1, 2011

Everyone's fine. Now I'll tell you what happened.

After two hours of intense negotiation about which animals could join us, Ryan and I went to the pool. This is a fancy-shmancy public pool with a lazy river, in the middle of a 161-acre park, filled with trails, ball fields, lakes, and woodlands.

We spent three hours at the pool, doing typical pool things. Then we headed for the playground just outside the pool's gates. Ryan started to run up a big grassy hill. I said, "Before you run off, let me grab my bag - don't go too far." I got my bag, and when I turned around, Ryan was gone.

At first I wasn't too concerned - this is hardly the first time Ryan has run off. I looked around for him, calling his name.

After maybe 15 minutes, I started to panic.

Five minutes later, I called 911.

A team of county police immediately arrived on bicycles and fanned out in search of Ryan. I walked around with an officer and screamed Ryan's name.

About ten minutes later, one of them radioed that they had found Ryan. They would be bringing him back to the playground.

I paced, waiting for them. "I'm going to kill him," I muttered to the cop who had been babysitting me.

"Please don't kill him in the park," he advised. "Wait til you get home."

Ten long minutes later, Ryan arrived, riding shotgun in a golf cart. They had found him over a mile away from the playground, near the Bronx border.

"He's pretty fast," commented one of the officers who had found him.

Ryan was smiling, oblivious to my anger, indifferent when I tried to explain to him why he can't just run off without me. I yelled at him in that same unsatisfying way I did when he ran into the street by himself - having no reason to believe my point had gotten through to him.

Both my mother and my mother-in-law suggested a stiff drink was in order. Who am I to question their advice?