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.