The Denver Autism Wheel

It’s hard enough just being a preteen (tween…whatever…see??), but then you have to go and add in autism and a bunch of your peers suddenly acquiring a social/emotional awareness around you, and you have a perfect stormof hormones, velocity and increased demands on your attention, perception, ability to think abstractly, and figure out what the heck is going on that makes an autiemom’s teeth rattle.

Eustacia Cutler (Dr. Temple Grandin’s mom) once opined that adolescence and autism are the stuff of the devil (see me quote that in my last post, too: think it’s been on my mind??) but no matter what you call it, Chris is in it, and now it becomes my job to do my best to see him through Transition #2.

Transition #1 (preschooler to elementary school) wasn’t fun. Chris didn’t speak much until he was about 4. His Kindergarten class had its “bridge” ceremony at the end of the year (which is a whole other kind of brain damage), and the teacher asked each member of the class what they might want to be when they grow up. Chris told her “a typer or a writer.”

I was there. I heard him clearly. I worked from home when he and Little Brother Luke were preschoolers. I am a writer. It warmed my heart that he wanted to follow in my footsteps. But he didn’t like hearing his voice amplified over the microphone, so he didn’t speak up. His teacher “translated” for him: “He says he wants to be a typewriter!” The parents all chuckled. A typewriter. Ha ha.

Aside from the absurdity that any child born after 2000 would even know what a typewriter is without checking Wikipedia on his mom’s smartphone first (feel free to roll your eyes, too), that was just one example of why Chris didn’t talk much. It took a long time for him to formulate his thoughts in the first place; then to have those thoughts mangled by an adult who wasn’t listening particularly carefully…well, it just wasn’t worth it.

Enter Transition #2 (elementary to middle school). Where we live, elementary school is K-5. Middle school is 6-8, and high school is 9-12. Chris talks a lot more now than he did as a Kindergartner. He has some “friends,” who know he likes Big Ben, history and science, and scary Halloween stories. He doesn’t know much about them, though. When most of his classmates gossip or play basketball at recess, he still likes to swing on the swings. He’s definitely at a turning point with his peers when “play” turns into conversation and there is a much higher emphasis on small talk than expertise.

He turned 11 back in December. He’s currently 5’ 4” and weighs about 105 pounds. His voice changed over the summer (so he now sounds like my adult brother, which freaks me out). He’s a good foot-and-a-half taller than the shortest kid in his class, and he’s as tall as his teacher. Puberty: meet autism.

My goal for sixth grade for him is to peel back the para support at school and let him get as much work done on his own as possible. Also: that he not get locked in his own locker. We started the transition process when school started up after the new year, and so far, things look good. His middle school staff understands that “it’s not cool to hang around with grown-ups,” so they fade para support as much as possible. Hopefully, that’s a step toward my first goal.

My second goal is a bit more complicated. I have a lot less control over whether it works out kindly for him. A big part of this transition is for me, too. Chris isn’t my little boy anymore. I can’t fix all of his problems anymore. I can’t get between him and the bullies.

And, of course, that wouldn’t be good for him, either. I shouldn’t solve all his problems for him any more than I should do his homework for him. Yes, it’s going to be a bumpy ride. Yes, we’re going to have some uncomfortable conversations in the next couple of years. Yes, he’ll probably be called into the principal’s office to explain himself.

But it’s not a race to adulthood. It’s a process. Transition #2: he’s going to learn to stand on his own two feet. It won’t be pretty at first. But it isn’t pretty for anyone, and keeping the bad guys away for him just teaches him to rely on me instead of himself. The (probably ugly) lessons he learns now will help him become more self-reliant and confident as an adult. My challenge is to back off a little and let him learn.

I love the line in Ratatouille when the critic orders: “I’d like some nice, fresh perspective.” I’m looking back now on five years of knowing what to call the stims, the awkwardness, the gaps in understanding. Eleven years total in this process, but five years of talking to people (sometimes arguing with them; sometimes that just happened in my head), trying things out, working with Chris, banging my head some days. And then he became an adolescent…

Eustacia Cutler explained this stage brilliantly: autism + adolescence = hell. I can only imagine. Take everything you know about how your child communicates (or doesn’t) and then add in the confusion of physical changes in their bodies, added hormones and new smells, voice changes…yeesh: check, please.

But you can’t just pay and leave. This is only the beginning of the time when you can make the most difference for your kid. And, if you’re like me, you’re learning as you go. Damn it, Jim, I’m a mom, not a psychologist, sociologist, anthropologist, agony aunt, Sherlock Holmes, decoder-of-strange-explanations-for-irratic-behavior. And for goodness sake, he’s still my kid, who looks to me to make sense of the world. I remember being a tween: the world don’t make no sense, but it’s all TREMENDOUSLY DRAMATIC.

Back when we first got this whole living with the diagnosis of autism thing rolling, back before Karl and I knew how much power a parent’s voice carries, we sat in silent desperation in a parent/teacher conference and listened to the SpEd coordinator and Chris’ first grade teacher as they explained that it was normal for Chris to fall farther and farther behind his classmates. That’s what autistic kids do: they fall behind. That’s OK. “Your job is just to love him.” Those seven words have stuck in my throat for 5 years. Because “loving” your autistic child means so much more than hugs and driving him to and from school every weekday. Love means reading everything you can find, talking to specialists, pounding on the principal’s desk when he won’t listen, soliciting expert information, gathering human and print resources to provide the “free and appropriate public education” you never thought would be so difficult to secure when you saw that little bundle in the bassinet.

It also means you never give up. You do what you have to do because you’re the one who has to do it.

But there’s good news here. Chris is going into 6th grade next year. We’ve already started the transition process, and he’s met his new staff a couple of times. His para isn’t following him to middle school because she realizes “he has to make the transition and be successful in a new environment.” We have an education advocate. We have a support structure. We have teachers who listen and try and work and try some more. We have all this infrastructure around the guy. And now those words come back to me: “Your job is just to love him.” Yah, lady, and I do. Because now that we have the educational infrastructure in place, I can be there for him to talk about all those weird teenager things, try to help him make sense of the jungle of social/emotional changes his peers will find so much easier to navigate.

So here’s the nice, fresh perspective: get that stuff in place. Early intervention rocks. It helps lay the foundation for the next stage of development. Ask the questions, advocate, share, stress. And put down the next layer of support. Rinse, repeat. And trust that all that good prep work pays off. All the scaffolding will come away from the building as your kid gets a handle on the expectations, goals and habits he will need. The important thing is being there. And “just loving him” is never “just” loving him. Yet it is. Yes, it’s a lot of work, and there’s no immediate payoff or reward for a job well done. But each layer you put down is another layer of understanding, coping, learning and growth that he will take with him to his next stage of development.

So we’re getting ready to make the transition to middle school next fall. If you’re reading outside our immediate South Metro Denver area, elementary school is K-5 here, middle school is 6-8 and high school 9-12. So there’s a big shift on the way next year, and I started figuring out where we were going early, so we were able to throw the dart with confidence in January, after Winter Break. Here’s what I looked at for middle school.

I wanted a school that was big on integrated classrooms. The school we chose has a wide mix of typicals and SpEds in the classroom. If a student needs para support, they fade the adult as much as possible because they get it that “it’s not cool for a kid to hang out with a grown-up all day.” They try to mainstream kids as much as possible, so you don’t end up with a room full of SpEd and a room full of typical. I prefer it that way for several reasons: I don’t want the SpEd kids to stick out (more than they would ordinarily) because the typical kids don’t see them much during the day, and I don’t want him to lose contact with the typical kids who will be going to school with him from his elementary school.

I wanted a place that would help him shine at what he likes. There’s only so much any kid can stand not being remarkable. Everybody is awesome at something. Chris happens to be good at building stuff, and the middle school we picked has both wood and metal shop along with computer-aided drafting and animation. Cool.

I also wanted to pick a school Luke could move into. We ended up going with our neighborhood middle school, so Luke will have classmates there as well.

And we wanted to keep the great relationship we’ve been building with the District. So I spent some time talking to principals and SpEd staff, visiting the schools and taking a tour (far more tailored information than the “prospective parent night” session, and the staff are very nice and willing to walk around campus and talk up their schools).

So, it will be a big transition. But we’re starting off right, I think, with a lot of communication, a lot of advice, a lot of listening. We’ll start bringing Chris to these meetings soon, so he can start getting a handle on lockers and passing periods and homeroom and whatnot. But it’s a start.

It’s a bit late, but this is important, so I’m attaching a link to this post on The Stir about how Awesome we Autiemoms are (and Autiedads…you guys get loads of props, too). Check it out http://thestir.cafemom.com/toddler/120195/9_ways_special_needs_moms

Nyhavn in Copenhagen

Karl and I took the Chris and Luke to Denmark in Summer 2009. We chose Denmark for several reasons. It was the first time the boys were going overseas, and we wanted them to see something different from what they knew in the Denver Metro Area. We wanted them to eat new foods, see new places, interact with new people. We wanted them to hear people speaking a language other than English. BUT! We wanted them to be able to get help in English if anything happened.

Imagine it: my 6YO NT and my 8YO HFA in a foreign country for the first time. What could possibly go wrong? Well, off the top of my head, they could get lost or hurt. They could behave inappropriately and start a fight with another child without knowing they violated a cultural norm. They could miss a train or a ferry boat and end up on the wrong side of a large city without somebody to look after them…the list of things to fear is fairly long. BUT! The alternative is to stay home. Never venture beyond our own porch, never taste new foods or see new places, never TRY. And that’s not an alternative I’m willing to entertain.

But why put yourselves through that, I hear you say. Didn’t Chris pitch a total fit on the plane with the change in air pressure and the length of the flight, or lose his mind the first time a train whistle blew too loudly for him, or lie awake all night because he wasn’t in his own bed? Autistic individuals crave the predictability of routine and ritual, you remind me, so why did you open him and yourself up to the potential for a 2-week stay in Tantrum City, Denmark?

It’s just exactly because of that, actually. Human beings, typical and autistic, love those old routines, the habits and patterns of day-to-day life. The unpredictable can be intimidating for all of us, but we learn to adapt. We all learn to adapt. Some learn to dive in with a sparkle in their eyes, and some learn to scream and flail until somebody takes them home. We have raised Chris to be OK with change because change is life. If he is to become a productive and confident adult someday, he has to know how to handle change with grace. Period. And as his parents, we have to teach him how to do that.

So. They got their passports. We made a fuss about that. Not many children in the United States even have passports, much less use them. We were going to use them: how exciting!

We read books and visited websites about Denmark to help establish context: there were castles and boats and Vikings (show me a boy who doesn’t like a good Viking story!) and trains and…bicycles! Fun fact: Copenhagen, Denmark, is the world’s most bicycle-friendly city. They have separate bike lanes everywhere they have streets. They even have separate traffic lights for cyclists in town.

We got Chris an inexpensive digital camera. He was really into taking pictures at that time, and we thought it would be a nice way to show him 1) that we trusted him to take care of a piece of electronic equipment that adults use, and 2) that we value his perspective of things. He took lots of pictures of staircase railings and restaurant table legs and sidewalk cracks and the fronts of trains. It was all good: he captured what he wanted to (and didn’t lose the camera, BTW).

We also brought along an iPod Touch with his favorite movies and music already loaded. Lordy love Apple for creating such an awesome, useful, pocket-sized device because it gave both boys something familiar to do on long train trips after they’d watched their hundredth quaint village slide by. It also helped us adults orient ourselves with the mapping and translator apps.

We stayed up late, we rode bikes across the city, we ate hotdogs and ice cream, we visited castles that were older than our country and spent an entire day in the original Legoland. And now, Chris and Luke have those memories forever.

Next stop: probably Grandma and Grandpa’s house in Washington State. Not every adventure has to be grand, but we do have to keep pushing the comfort zone and letting Chris get a feel for new experiences. And he gets to learn to handle new situations with us as his lifeguards, there to help if the water gets a little too deep. Sooner or later, he will be an adult. Autism doesn’t wear a sign, so he will look to all the world like a strong, tall, capable man. We want him to know how to act like one, too, and the only way to do that is to practice.

I had never paused to parse daily classroom tasks until I was faced with the news that my autistic son was underperforming and noncompliant in the classroom. It was an ongoing struggle at his first school, to figure out how to meet the odd gaps in ability he struggled with. He had loads of ideas but had difficulty expressing them. He understood facial expressions but reacted unexpectedly to them. He knew his times table back and forth, but he flailed every timed test in the classroom (“flailing” a test is “failing” but with additional arm-waving caused by distress and helplessness).

It wasn’t until we got to a school with good Special Ed support that we realized the problem was in the complexity of regular classroom tasks. Chris *knows* his times tables and can recite them till the cows came home. But. When he has to write them down, he has a whole laundry list of disparate physical and mental tasks to perform, in addition to remembering the right answers. He has to grip the pencil tightly enough that it doesn’t fall out of his hand but not so tightly that his hand hurts by the end of the test. He has to read and interpret each problem accurately. He has to remember how to form and then draw the numbers that make up the right answer. He has to remember to move on to the next problem after he answers the current problem. All of these granular tasks are constraints on his overall test performance because they are not automatic. He has to keep each task in mind the whole time.

Lumping these separate tasks into what, for typical students, is a single activity produced horrible results on those tests, not to mention a lot of frustration and anxiety on his part. He hated timed tests. There was too much to remember and coordinate. He would either freeze, staring horrified at the clock (picture Dorothy watching the hourglass in the Witch of the West’s castle…) or would simply put his head on his desk and refuse to participate at all. His teachers, who expected that a writing or math exercise couldn’t possibly be *that* difficult, would explain to us at conferences that his noncompliance in class was causing him to fall behind his peers, and no matter the *consequences* of his failure to perform, they still couldn’t get results.

What we saw were the consequences. His lost recess time meant extra fidgets when he did homework. His extra work meant longer intervals of sadness and anxiety. The problem was that the two sides of this situation weren’t playing by the same rules. Neither the teacher nor Chris had a concrete notion of expectations. As a result, both were flying blind, and of course, it was frustrating.

His current school staff gets it right. They administer the same test, let’s continue to use math as the example, in two ways. First, they test for subject knowledge. They do this by reading him the problems and having him answer orally. In this way, he can demonstrate that he knows the material. Period. The second time, they test for reading comprehension and writing ability. They have him read the problems and write down the answers. They can observe a variety of trends in this test: his ability to manage his time and complete the work, understand and follow directions, maintain his pencil grip and write legibly…but all of these observations are separate from determining whether he knows the subject.

The real key to Chris’ success is in his teacher and staff’s ability to analyze a given classroom activity and determine what part of Chris’ knowledge they want to assess. They then translate the results of their analysis into a concrete set of expectations which they give him. He knows what they want from him. They know what they are measuring and what they will receive from him. It has made all sorts of difference in his ability to experience success, demonstrate his knowledge, and also work toward strengthening his deficits. His ability to manage his own time has improved markedly, as has his confidence in expressing himself in writing. That means he writes more, and he writes more easily: working to his deficits through his strengths.

Was it easy? I have no idea; I’m not a teacher or a special ed specialist. It took dialog with us as parents to understand what we saw and knew about Chris. It also took planning and thoughtful deliberation to implement the changes. I can tell you that it was the right solution for Chris, and it has helped him learn to like school and trust his teachers and support staff. It has also helped foster his academic curiosity and willingness to learn and participate. And that’s huge.

My original idea for this post that I named two weeks ago got reframed in the last few days.  I got a call last week, from Ian’s speech therapist at school.  She always starts voice mails with ‘Everything’s okay!  Just wanted to talk to you about an opportunity for a peer study.  Please call when you can.”  Unfortunately, I was in a two-day meeting.  As always, thank heavens for email.  Sent a note on one of my breaks letting her know I couldn’t chat during school hours that day but that I was able to come by the school the next morning. 

Walking into school I ran into his teacher who had line duty.  She’d asked if I’d talked to his speech therapist about the peer study.  That she’s excited about it if we decide to do it. 

After his diagnosis, one of the first things we did was get Ian in a playgroup run by a psychologist and an occupational therapist.  It was instrumental in helping both Scott and I understand some of Ian’s behavior and triggers.  We eventually pulled him out when his schedule got to be too much for us – before we hired our after-school help. 

We had Ian and Alexa in a great summer camp last summer that was for socially awkward kids – literally teaching them how to play, how to sit at a lunch table and have conversations, how to brainstorm in a group just to name a few.  It was a stupendous experience.  His teachers and everyone who worked with him last year commented on how much he changed over the summer.  We’re definitely signing them up again this summer.

Ian has had a few friends over…as I write that sentence it seems true, yet not.  Because we work. Because our school has no student directory.  Because I only get to about half of the PTCO meetings…(and other excuses I’m not going to even bother to attempt to write) we’re horrible about ensuring Ian gets people over to the house.  It’s one of my red buttons if you can’t tell.  He’s got a great friend this year and he’s only been over a couple of times. 

But this was new avenue…a peer study.  I got the basics from the speech therapist.  Scott and I are intrigued enough that we’re going to go meet with the professor, teacher, speech therapist and school administration next week. 

 Ian, I promise that we’ll get a few more friends over for a get together in next couple of weeks. 

I will continue to post more here as we learn and progress through this.

@ autiemomkate:

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 14 other followers

Older posts

Calendar

July 2017
M T W T F S S
« Feb    
 12
3456789
10111213141516
17181920212223
24252627282930
31