SPIDERMAN!!!

Remember The Nutcracker? We did it again.

The Theater Development Fund has a division called the Autism Theater Initiative, and they present autism-friendly productions of Broadway shows. I had heard of these, but was pretty certain Alex wasn't ready.

Then we had a splendid evening at The Nutcracker with American Repertory Ballet, and I gained some confidence.

Then I learned that TDF was sponsoring a performance of Spiderman: Turn Off the Dark.

We hemmed, we hawed, we debated. This was a jump--was he ready? In the end--and very near the end, as they were almost sold out--I bought two tickets. They were $80 each, so we didn't go for a family four-pack (that's way cheaper than a regular Broadway ticket, but still).

TDF has their act together. I am thoroughly impressed by this organization. Their website has a ton of resources, including social stories to prepare children for the theater. I downloaded and customized a social story for him. We read it...

And he said, "No." Emphatically. I thought we were sunk.

But my husband helped put it together. You may call it bribery; we call it motivation and scheduling. The motivation gives him a reason to try something new and scary, and the scheduling gives him comfort and a sense of control. The day was planned with four stops: Rec gym, Chili's lunch, Spiderman, Toys R Us.

And today, I tried hard to keep positive and calm, positive and calm... I talked to him about how it would be like The Nutcracker. How this time there would be flying. How we can take a break if he needs to. He insisted that Spiderman was at Best Buy, but I assured him, "No, he's not there, but don't worry! Hey, what DVD do you want to watch while we drive?"

He rode like a champ. He wasn't a fan of the parking garage, but he calmed quickly. He walked beside me down 42nd Street. He looked at the tall buildings and declared "No elevator!!" Fair enough, kid, no elevator.

In the line to get into the theater, we shared our supply of earplugs with a family behind us. From that moment onward, there was definitely a sense of unity among the audience. We get each other; we relate; we are in this together.

Inside--wow. TDF had volunteers stationed all over--information desk with visual aids (schedules, PECS, calming suggestions), break areas, quiet areas, even "family" bathrooms. And every house staff member was warm and welcoming. One gave Alex a plastic snake (the kind that has a dozen joints, so it wiggles) when he was antsy.

We got to sit in "box" seats because...well, I know a guy. And it was FABULOUS. Alex could stand, squirm, sit on my lap, and jump like he loves to do. And the first act was a wonder. He was fine! He liked the music, he was patient, and then he LOVED the flying!

The one problem: he REALLY wanted to go on stage.

"I want to look through the telescope."
"I want to catch the spider."
"Look! It's Spiderman. Let's go say hello."

But bless him, he didn't melt down.

At intermission, we found a fairly quiet spot in the lobby to have snacks. The ushers were so friendly! He was super-excited about the Swedish Fish I brought--and stayed that way. Red dye, man...shouldn't have brought the whole bag. I had to withhold them in the second act, allowing them sparingly.

And admittedly, the second act was harder. He was a little done by then. But he stuck it out, never using his iPad or the break areas. Okay, I kinda got stubborn around my favorite song--I did not want to miss "Boy Falls From the Sky." But it didn't get ugly.

At curtain call, I swear I saw a little more excitement from the cast than is usual...a little more tenderness. I heard that they were very excited about today, and that warms my heart.

And when it was done, I cried. We made it. He did it. He said he liked it. And he was ready for the toy store.

Once again, I am brimming with gratitude. Thank you, TDF, for providing accessible theater. Thank you, Foxwoods Theater and Spiderman: TOTD for welcoming us. Thank you to my "guy," who gave us the best vantage point for Alex to enjoy his first Broadway show. Thank you to my husband, for saying, "Yes, buy tickets! I'll take care of Eddie." Thank you to my family and friends for following our journey, offering wishes, prayers, and affirmation.

***UPDATE***
I'm receiving some new visitors today: WELCOME! Thanks for stopping in. If you're interested in looking around, in addition to my Nutcracker story linked above, my other favorite entry is titled Ambassadors. I hope you'll enjoy that one, too!

Something Big & New

This is meant to be a summer blog...but today was too awesome to go unmentioned. Why was it awesome?

Because I got to share with Alex a world I once loved living in. I spent two years after graduation working for a ballet company, doing everything from marketing to box office to stage management (I bounced around a lot). I also grew up dancing, and Nutcracker is the biggest tradition in the dance world. But a crowded theater is an overwhelming prospect for my sensitive boy, so I didn't know if I could bring him there.

Because fifteen years ago I met a wonderful man named Douglas, who was then a dancer in the company. Now he's the artistic director. When I wrote and asked him to let me bring my autistic son to a dress rehearsal, he GOT it. And today, he made me feel entirely welcome.

Because when Alex squealed, "It's the Mouse King!" during a quiet moment in the party scene, Douglas came back and welcomed us. With that gesture, my amusement was allowed a victory over embarrassment. 

Because Alex met a few dancers, and every one was gracious and warm. I don't know that he will remember any of them, but I hope that he will remember that people were nice.

Because no one chased us out of any space we went, even backstage. Doug even invited us on stage after the show--though I was paranoid he would run into someone's way, so I ended that quickly.

Because hey, I saw a few people I recognized, and it was wonderful to be back in the space.

But most of all, because in the absence of a paying audience--and behavioral expectations--I could let Alex adjust on his own terms. We had never been in a real theater before, and even movie theaters are still a questionable prospect. A dark theater house with loud music and bright stage lights was going to be a big new environment to take in. He bounced a lot. When he sat, it was on the edge of the folded seat, sometimes with his feet on the seat back in front of him. He sat on the floor. He bounced back and forth in our empty row, staging his own battle with the Mouse King. And by the finale, he danced up the aisle, mimicking what he saw on stage.

Because THAT joyous connection was what I was hoping for, and he GOT THERE!

Because I was able to help him adjust to a new situation; because I got to watch him do it.

And because that's one more thing he CAN do.



I am ever so thankful for this adventure, and for all who made it possible. Happy Thanksgiving!

Ambassadors

Recently, a friend of mine mentioned me in his radio broadcast, complimenting my online narration of life with Alex. (Thanks, CJ!) Quite sensitively, he did not reveal Alex's diagnosis publicly.

Many parents don't disclose their children's autism; schools are bound by confidentiality laws and CAN'T reveal such confidential information beyond authorized staff.  Of course, medical diagnoses should be confidential, but in some cases, many parents choose a more open approach.

Personally, I'm in the "no secrets" camp: I tell everyone he's autistic.

There are plenty of reasons why I do. Firstly, I'd like every school staff member to know how to approach him. School should be a safe and welcome environment for all students, even if (especially if) they have special needs. To that end, I also want students to know. Alex isn't going to behave like neurotypical kids, so they shouldn't expect him to do so.

Yes, it's a label--gasp!--but if that label lets people know how to approach him, lets classmates know that he's not just the weird kid, then that label is helpful. And what's more...the word "autistic" doesn't scare me. I think it scares less and less people anymore.

When I tell people "He's autistic," most of the time, they don't look appalled or scared. Sometimes they get more cautious; sometimes they even get excited, because they get it. But mostly it's curiosity and courtesy--they know that autism is something different, but they don't know exactly what to do.

This is the part I love. This is my mission.

My newfound goal in life is to educate people on autism: what it is, why (we think) it happens, how it works, and most importantly, how to interact with an autistic person. Alex is part of a generation--a BIG generation--that will enter adulthood and the global community. He has the ability to do a job and have a career, but only if businesses understand that he's not a typical worker. He may not make small talk or do well in conversations with clients. But he'll sit at a computer and plug away at a problem until it's solved.

But before he gets there, he needs to go to school. He needs peers who will accept him. He needs to be welcome in extracurricular activities. And he needs to feel success, not rejection.

And in addition to that, he's going to interact with people in the community. At the grocery store, a restaurant, at the swim club--the more people who know about autism, the better off he'll be. (I cannot count how many servers and restaurant managers have genially welcomed Alex into their restaurant while he brings in his own Chili's takeout box.)

Okay, this is my favorite part, really. Alex and I--our family--are ambassadors. We talk about autism. We show autism. We let people know what they can do. I will talk to ANYONE about any aspect of autism. I try my best to demystify it. I try to say, "It's not a monster in the closet! It's him--my beautiful boy."

When Alex needs input in public, I give it to him. I'll pick him up and spin him, squeeze his joints, I'll even squeeze his head the way he likes it. That last one may turn heads, I know, but I'd welcome the conversation. When I need to talk to him, I get down on his level and I explain. I don't lower my voice, I don't curtail my instruction. I want people to hear and see. I make eye contact and I smile at people.

Because I'm damn proud of my son. And I want people to see him. I want people to know about autism, to meet him and fall in love, and to see that while autism may make him different, it doesn't make him less.

And I hope that if people meet and love him, they'll give other autistic kids a chance. Maybe they'll meet someone with more severe autism, but they'll recognize something similar. Maybe they'll think twice before judging the parents of the kid having a meltdown in public. Maybe they'll encourage their own child to be friendly with other children with special needs.

So I will sing the song of autism for all to hear! Because my child deserves to meet people who will recognize it and sing along.

Note: This is a sort of follow-up to my last post, Taking Notice. Please check that one, too, if you haven't already!

Taking notice

Three years ago, Alex's diagnosis was still new. I was still scared. And a boy named (I should change it...hmmm...) Colin walked into my class. As usual, the student IEP's were getting to elective teachers late, so I didn't know until three classes later that Colin is autistic.

I was thrilled. Here was a kid on the spectrum who could walk into a room without being immediately labeled! It gave me such hope!

Since then, I've noticed something changing, though: people are learning about autism. They are beginning to accept and even embrace it. The kindness of strangers still moves me to tears when they take special notice of my boy.

And his peers. And others' peers! When I see kids speaking kindly, sensitively to their autistic classmates...THAT gives me even more hope. Alex has two friends from school that I understand were big defenders when other kids weren't respectful. They go out of their way to reach him and connect.

When I look at Alex, I wonder...will he ever blend in? Do I even want him to? I'd like him to control some of the stims, like the flapping hands and pacing when he's overwhelmed. But more often, I LOVE his differences. And I have hope that others may come to respect them, too.

And so, once again, my hope has changed. I hope that as Alex grows, people will continue to notice he's different, even notice he's autistic. I hope that they will know what that means, and how to approach him. And I hope that these people will help him flourish, growing into a happy, confident man.

And I am working to make that happen.

Vestibular and Proprioceptive Input

Today, niece Erika and I took the boys to a new bounce-house place. My husband had pointed out something simple but important: Alex's joy was hiding.

You see, he loves video games--obsessively. But he can't stay there all day (though he would if we let him), so what else do we do? Recent attempts haven't been successful.

So let's ask the deep question: what makes Alex happy? Squeezing. Hugging. Tickling. Tackling. Swinging. Being upside down. Testing his balance. And not being asked to talk.

In my reading, I've learned that...okay, some people whom I can't identify--scientists? behaviorists? awesomists?--have identified extra senses, beyond the standard five. One is vestibular, which has to do with balance. Another is proprioceptive, which is related to pressure on the body. The last (I think) is something to do with awareness of your body. That one means little to me but the first two are huge.

Alex SEEKS vestibular and proprioceptive input. It helps him stay calm and focused. So I need to find more activities that fill that craving.

Today, it was 'R Bounce--and he loved it. Tomorrow...don't know. But I'm going to try and stay focused myself, and find more options!

The Queen

Last week's tooth drama seems to have been caused by Alex's bed. You see, for three years he has slept in the top bunk of an un-bunked bed. Basically, it's a twin bed with rails all around. He flops around when he sleeps and occasionally bangs the sides, falling right back to sleep.

A few weeks back, he hit his face. Apparently, he hit his tooth hard enough to detach...the nerve? Or something? Anyway, the dentist declared the tooth necrotic, needing removal; and he diagnosed my boy with an infection under the tooth.

So besides the dental drama and antibiotics, what to do? Take off the rails? We tried that, and he freaked out--change is hard. So we decided to give him our guest bed, which is a comfy queen size.

Now mind you, before this it was in Eddie's smaller bedroom, squeezed in with the crib. Now the twin bed is in Eddie's room, and we have a hopeful plan for guests: Alex has a "sleepover" in the twin bed, and guests get Alex's room.

This is, of course, if we can get Alex to agree to it. We hope to sweeten the deal by adding the bed tent we've been hiding a few years. Friday we can test it out, when we have company.

But in the meantime, Alex is sleeping REALLY well. He wakes up happy, and he loves to hang out there. I'd have preferred a double, but we had the queen. And as long as it works this well, I'll take it.

Meltdown

Today was a rough day, as you know if you read my facebook feed.

Alex had a runny nose and cough, so we kept him home from ESY (summer school, for the uninitiated). Oddly, by 9:00 a.m., he seemed much more cheerful.

Eddie has been intermittently cranky-as-hell lately--I think he's teething.But I didn't want to give up on his swim lesson this morning, so we went anyway. It actually went really well, until it didn't. Ten minutes, tops, and he was done.

Then I rush and drop him off with Grandma, so I can make it to my appointment for bloodwork. Scoot in the door at my appointment time...my appointment that is scheduled for next Monday.

Next I ask Alex to come for a ride with me to take Grace to her tennis practice. All was well until we arrived ten minutes early, then Alex saw the courts and the mantra began: "I want to play tennis!" He even added variety after 20 times didn't work. "Hey! I want to play tennis!" x20. "You knoooow...I want to play tennis." x20. I had to be pleased by his willingness to expand his phrasing. And we actually had his racket and ball, so...

We got out and tried a little play, staying out of the way of other kids warming up. Ironically, it wasn't warm--it was frickin hot. 88 degrees, humid, full sun. I hoped he'd realize this was unpleasant, but no. After 5 minutes, the courts were filling up, and I forced an exit.

Meltdown.

We haven't had a full-blown meltdown in a month or more. If you don't live with autism or something similar, here's a short comparison. In a tantrum, it's done as a means to an end, seeking your attention, and is actually controlled for effect; a meltdown is overload, beyond the child's control, and will carry on without attention. When Alex melts down, whoever he perceives created the problem cannot calm him. And today--well, I didn't have the patience to try. It was a short ride to Grandma's, but he wailed the whole time.

Enter Grandma:magical, wonderful, former-first-grade-teacher Grandma. "What do you want, love? Tell me, and I'll make it happen...you want to play tennis? Of course you can play tennis! But you know, they don't let you play tennis when you have a cough...No, I'm sorry. So let's get you all better, and then you can play tennis, my sweet boy!" This went on for 5-10 minutes, until the waves subsided, while I was in the kitchen making his lunch. "Hey, you know what makes you strong? Eating good food...Look! Mommy made you a sandwich! Will you eat your sandwich with me? I was having some cereal..."

My mom is wonderful--but this was magic. He's in her specialty-age-group now. And you know, she's Grandma. So even though he wasn't totally happy, he moved on.

There were more crashes after that, but small ones really. And somehow I dragged myself out of my slump and came up with good ideas. One was calling in backup in the person of Cousin Courtney. She can cheer up any kid and mommy.

And tonight I looked at my boy in his zombie state, playing a video game and got smart. I declared a break time, got right in front of him as asked with a big smile which very physical activity he'd like. He decided on spinning. So I spun him. Then I tickled him. Then he "flew" on my feet. The zombie was gone, and my boy was back.

I have to remember those moments, especially when one of us is melting. I actually do know what I'm doing sometimes.