Friday, May 27, 2011

Stay in your lane.

I just put a tearful Ryan on the school bus. I tried my best to figure out what he was crying about, but eventually I had to carry this sobbing mess of child to the bus and wave goodbye. It wasn't the first time, it probably won't be the last.

My busybody downstairs neighbor was walking her little drop-kick yappy dog (named Princess, of course) when the bus pulled away. This woman has an opinion on everything concerning how I should raise my child; when he was an infant, she admonished me for washing his clothes in the building's laundry room, declaring that it was full of germs and she would feel safer hand-washing a baby's spit-up-on onesies.

"What school does he go to? Oh, and he gets to take the bus! How lucky!"

I said something about how the school district's budget cuts mean only special ed students get bus service. Immediately I realized this was a can of worms I didn't need to open, but it was too late.

"He doesn't look special ed to me!"

Yeah, that's supposed to be a compliment or something, right?

"Well, he is."

Exhibit A; the boy participating in "Very Special Olympic Day," a field day for all the special ed classes in our district. BTW, he cheated at all the games.
"Where I come from," she declared in her lilting Jamaican accent, "we don't have all these special ed problems. We just give some good discipline and..."

At this point, I knew this conversation would go nowhere. I thought of the many elegant explanations I could give about the benefits of special education, or the observations I could make about living conditions in her native land, or the response I most wanted to give ("Where I come from, we mind our business.")

But instead I just said, "I don't want to hear this from you," and I walked ahead of her into the building, closing myself in the elevator before giving her a chance to ride up in it with me.

In the immortal words of one of my favorite daytime tv judges, Stay in your lane, I know how to drive this car.


---
Addendum

Tuesday, May 24, 2011

What do you want from us?

"WHAT DO YOU WANT FROM US?!?"

There's a group of kids who play in front of the building across the street from us. They ride bikes and scooters up and down the sidewalk and attempt to play dodgeball on a six foot wide strip of grass. Ryan really wants to play with these kids. He chases them down the sidewalk, tries to initiate games of tag by running up to them and tagging them.

But these kids don't get him like the kids in our building do. They do not reciprocate when he makes it obvious he would like to play with them. They make no effort to include him.

And today, one snotnose little girl rode her bike as far from Ryan as she was allowed, repeatedly shouting "WHAT DO YOU WANT FROM US?!?"

I didn't want to discourage Ryan from his attempts at socializing, but I redirected his attention to an ant climbing a tree while I contemplated whether or not to react to the brat. I chose not to.

When most people think of an individual with autism, they picture someone who craves isolation and avoids human contact. But Ryan truly wants to interact with other people. He rushes up to literally every person he sees and shouts a hearty "Hi!" If he receives no response, he will just keep getting in their face and saying hi until the other person acknowledges him or walks too far away.

He wants to make friends. He just doesn't know how.

Ryan has not yet learned the unwritten rules of interaction that come so naturally to the average person. He doesn't understand the concept of personal space. He doesn't know how to approach another kid and ask if he can play, and he has no clue if the person he wants to play with isn't interested in him.

And I don't know how to teach him this. Suggestions?

Monday, May 23, 2011

Party! Party! Party! Party!

When Ryan stepped off the school bus this afternoon, he was ready to party.

He declared his intention by reciting a Curious George script, in which The Doorman outlines for George what he needs to throw a party for the Man in the Yellow Hat:

"A is for Apartment, B is for your Buddies, C is for Cake, and D is for decorations!"

He repeated this a few times to make sure I understood.

"Oh, should we make a party?" I asked.

"A is for Apartment, B is for the Bodies..." Yeah, we worked on that for a bit...

Once we were in our Apartment, I told him to round up his buddies; he grabbed a certain orange T-Rex* from Dinosaur Train.

Then we made cupcakes. Really mediocre gluten-free mini cupcakes with no icing. They must have been good enough for Ryan's purposes; he later helped himself to at least three of them.

And while the cupcakes were baking, we made Decorations. Ryan made a sign that says "WE LOVE DADDY," and a picture of lots of flowers. I think he was trying to tell me he wanted to get a vase of real flowers, but I pretended not to understand him and directed him toward making a picture instead.

Then Ryan drifted into another Curious George episode, in which George learns to make a pinata for a party. Clearly, we were not going to be able to have a proper party without making a freaking pinata.

I made some (gluten free!) papier mache batter and showed Ryan how to tear paper into long strips. Those of you who have been reading The Ryan Files for a while will not be at all surprised that Ryan didn't so much want to touch the papier mache. I watched as he wrestled with the simultaneous desires to make a pinata and to keep his hands clean. The desire to stay clean won, but it won quietly, pleasantly, without tears.

So, with Buddies, Cake, and Decorations in our Apartment, Ryan was satisfied. He didn't need to go through the motions of having a party - the good time was in the preparation.

And when Stu came home from work, Ryan shouted "Surprise!"

Boyfriend certainly knows how to party.


* The character's name is Buddy.

Thursday, May 19, 2011

Ungraded

The annual IEP review went pretty much as I expected it would: all the teachers think Ryan is adorable and they love to hug him; he can read 20 sight words and can tell you that 10 is greater than 4; and he's not ready for mainstreaming; see you in summer school. One of the only surprises was that I managed not to cry.

I mentioned my concern about the regression we've seen over the past few weeks - loss of language use in contexts in which he used to use words; acts of civil disobedience that would make Martin Luther King blush - and after much discussion, we decided Ryan is probably acting out because he misses his sessions with Chrissy, his beloved at-home teacher (SEIT). Chrissy used to come over and play several times a week, then once a week, but then her work schedule picked up and their playdates became limited to once a month or so.

I had been avoiding finding another SEIT because Ryan has such a wonderful relationship with Chrissy, but now it seems unavoidable, because he really needs the extra help. Last night I finally broke down and asked Chrissy for recommendations of SEITs with more open schedules. Even asking for this feels like a betrayal of the relationship - 1,000 times worse than cheating on your hairdresser - but I'm sure Ryan will be able to bond with another special teacher.

The only other surprise from the IEP meeting concerned Ryan's placement for next year. I asked if he would be placed in first grade or if he would be repeating kindergarten, and in an exciting twist, he will be doing neither. Students in first grade are expected to take standardized tests. As Ryan will be incapable of taking these tests, and will instead require "alternate assessment," he will be considered "non-graded." So he'll just go to School. For convenience I'll probably tell people he's in kindergarten, but that won't really be true.

And that's fine. That's appropriate for him.

That's so far from mainstreaming, I'm kind of shocked I haven't cried about it yet.

Saturday, May 14, 2011

Has it been a year already?

Ryan's annual IEP* review is coming up this week. I'm mentally preparing to sit with all of Ryan's teachers and therapists and the relevant folks from the Board of Education to talk about Ryan's progress and what he needs in the near future.

We've played this game before, of course. We're going to smile about how cute he is, then talk about how hard he's working in school, and finally agree that he's not ready for mainstreaming. Someone will trot out a "regression statement" which I will use to lobby for summer school. Ryan will be promised the services he needs, and I will go to my car and cry because he still needs so much.

I appreciate how far Ryan has come - I really do - and I know we're fortunate that he's wading as close to autism's shallow end as he is, but damn it, this crap gets really frustrating sometimes.

Why are we still working on his ability to answer yes/no questions accurately?

Will he ever tell me "I'm thirsty" instead of saying "Milk starts with a letter M?"

How much longer will it be before Ryan thinks to communicate to us that he needs to go to the bathroom, and realizes he doesn't need to wait for me to ask him if he has to go?

Is he going to keep hurling himself to the floor and throwing himself into walls to hurt himself when he's frustrated forever?

How many more years until he can tell me what he dreams about? What he wants to be when he grows up? Who he likes to play with?

When will he have a friend his own age?


And as I'm getting my head ready for this annual review, I'm trying to focus on Ryan's progress relative to himself, but that's really hard to do when my friends are gloating about the accomplishments of their typically-developing children. Don't get me wrong, I'm thrilled that your five-year-old daughter has mastered fractions. I'm truly happy for you that your four-year-old can ask such insightful questions about the world. I love the imaginative stories your two-year-old makes up. But I'm learning that I've got an ugly jealous streak, and I want all that for my kid.

And I want my kid to be able to play with your kids without all sorts of special accommodations and explanations.

But I don't think that's going to happen next school year.





* Individual Educational Protocol - the all-important document that outlines what services a child will get in special ed and what the goals of those services shall be.

Monday, May 9, 2011

Win a Brady Rymer CD!


* See the end of this post to learn how to WIN A FREE CD *


The first time I heard Brady Rymer's children's song, "Love Me For Who I Am," I got totally choked up. Ryan had been having a rough day, and I was at the point where all I could do was strap him into his car seat and drive around until he calmed down. I turned on Kids Place Live on my XM radio, and this song came on. It was so clearly speaking directly to me, from Ryan's point of view.
Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Well I may not talk the way you talk
But I got some things to say
So won't you listen up
Come on, let's talk
You're gonna be amazed.

Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Cuz I ain't no motor that won't turn over
You tow down to the station.
No, I'm alive inside
I'm filled with pride
Got a wild imagination.

Please don't try to fix me,
Love me for who I am.
Please don't try to fix me,
Love me for who I am.
Cuz I am who I am.
I later learned that this song, and its album, "Love Me For Who I Am - Songs Celebrating Children of all Abilities," was inspired by Rymer's work at Celebrate the Children, a school in New Jersey for kids with alternative learning styles. Many of the students at CTC are on the autism spectrum.

I asked Brady what brought him to Celebrate the Children School.

"About 10 years ago," he writes, "just as I was starting to play music for kids, Monica Osgood, my friend and the founder-director of the CTC school, invited me out to play for the kids at the summer camp. From that first show on, I loved the school, kids, and staff. They have always been so appreciative and full of unbridled energy! I've been playing a gig a year there ever since. Each visit gets better and better and after one particularly great one a few years ago, I mentioned that we should write these kids some songs - anthems! Songs for them and about their experiences. So here we are two years later."

Brady plays music for the students, but he's not a music teacher. He tries to treat the children with special needs as he would treat any other kids of the same age: with respect, and with an energetic performance. Sadly, this must not be the case with all children's musicians these students encounter. Brady says, "One of the boys even said to me after a show, 'Thank you for treating us like real kids!' I asked him if I could use that as a new title for another song, and he was thrilled!"

This album was inspired by kids with special needs, but Brady says he's gotten positive responses from all sorts of children.

"I make sure not to make a distinction when we play the material live. I think the music and lyrics speak to a very wide range of audience and it was designed to do exactly that. It's best for us to just play the songs and let the audience react how they will. With titles like 'Picky eater,' 'Keep Your Wiggle Alive,' 'Love Me for Who I Am,' and 'I Don't Like Change,' it's pretty easy for families to relate to these topics and to relive their own personal experiences."

A portion of the proceeds from "Love Me For Who I Am - Songs Celebrating Children of all Abilities" will benefit Celebrate The Children School, and an additional 5% will go to Autism Speaks. I asked Brady why he supports Autism Speaks (because as you know, I really want to like them), and he made as persuasive an argument as any I've heard:

"I love and appreciate the work that they do; the research & the community building is incredible. And when we were in the very early stages of the project we sat down with them to talk about ways that we could collaborate. They listened to the songs and immediately loved that they were high spirited, humorous, fun and shed a light on the world of a special needs person. They also recognized the celebratory nature of the music. They knew that kids & families would have so much fun with it and get something positive from it. The celebratory aspect of the project is important to stress, and I'm happy that AS wanted to partner with that message. Besides working with Celebrate the Children School, AS is perfect in helping us get this music into the lives of families who really appreciate & enjoy it."

Brady will be performing at a few of the upcoming walks that the various Autism Speaks chapters are organizing, including the one on June 5th in NYC.

One lucky Ryan Files reader will WIN A FREE CD! Here's how: go to the Ryan Files' Facebook page, Like it, and write "Love me for who I am!" on the wall. I'll pick a random entry on Wednesday 5/11 at noon Eastern time.

In the mean time, please check out the album - listen to tracks for free at www.bradyrymer.com.

Friday, May 6, 2011

Reasonable Accomodation

In the ongoing effort to sell our apartment, we had our 1,000th open house and had to find someplace to go for a Sunday afternoon. So we decided to go to the zoo. Again. That zoo membership is starting to pay off.

The previous time Ryan and I had gone to the zoo, the focus of the trip had been our excessive use of public transportation to get there. Naturally, when I told Ryan we would be going to the zoo, the first words out of his mouth were "take the train to the bus to the zoo!" This was his expectation of how the day would unfold, and Stu and I could tell that our logical argument that it would be cheaper and faster to drive there would not be very persuasive.

Then I remembered there's a bus that goes around inside the zoo (the Zoo Shuttle) and could take us to a train inside the zoo (the Wild Asia Monorail). When I explained the new plan, Ryan was delighted. "Take the car to the bus to the train to the zoo!" Close enough, kid, close enough.

We waited on long lines to ride the Bus and the Train, but Ryan didn't seem to mind, because he was determined to ride a train and a bus. Not that he much cared about being on the train - he spent most of the train ride demanding snacks and ignoring rhinos. He cared about fulfilling The Plan.

It has taken me a couple of years to truly be comfortable with a trip to the zoo that has nothing to do with seeing the animals.