The Denver Autism Wheel

Archive for the ‘Reframing’ Category

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.

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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.

Every kid needs opportunities to engage successfully with peers. For tweens with autism, it's essential to meet that challenge.

There are some sentences that are difficult to scrutinize, coming from people I don’t know well, and that is one of them. What is “autism” perceptually for people who know very little about it? And what do those perceptions say about the person with autism? I would like my Chris to be able to navigate social interactions successfully. When people tell me they don’t notice something “different” about Chris until well into an interaction, that says to me that he’s learning to anticipate the zigs and zags of casual conversation. And that’s good news. 

Chris is in the process of learning how to get along with his peers, teachers, relatives and strangers. He does it a little differently than his brother Luke does, and sometimes it takes more practice, but he’s learning. The key is to create opportunities for learning. 

But how do you do social skills training for someone who doesn’t “look disabled”? Honestly, I don’t know. Contextual disclaimer: Autism isn’t one-size-fits-all. I’m the mom of one boy with autism and one boy without autism. I’m not a special ed teacher or therapist. Everything I describe is an anecdote, not a prescription. Having said that, here’s what seems to be working for Chris, in his process of learning how to interact with other people successfully. 

1) We’re honest with him. Chris has known he has autism almost as long as we have. He knows it takes practice to get social skills down. He knows it’s easier for his brother to make friends (and it irks him). But he also knows that persistence is the best way to be successful, and he’s willing to keep trying. We encourage that persistence and try to reinforce that there’s a difference between persistence (using different strategies to achieve a desired outcome) and perseverating (continuing a behavior which has proved unsuccessful). 

2) I joined the PTO at Chris’ school. This means I know about events ahead of time and can plan for the family to attend. Chris gets the chance to see his teachers and staff outside the classroom context, and he gets to try his hand at making connections. Among teachers and school staff, he has a rich selection of patient people who will let him try to reach out, even if it takes a little longer than they’re used to. 

3) He joined the Cub Scouts. And Karl has taken the lead in being the go-to parent at meetings. There tends to be a higher number of boys in Scouts who are not very competitive, very aggressive. He has a chance to get to know his classmates in another context, and his classmates’ parents get the chance to know him and us. 

4) We joined our neighborhood pool association. We live in an older neighborhood that doesn’t have a home owners’ association, but there is a pool that kids frequent during the summer. Families join and pay dues, and in return, there are barbecues and parties, swimming and movie nights. We get another opportunity to meet kids and parents outside the school context, make connections (“Hey, I remember you from the pool!”) increase our family’s visibility and strengthen the community’s understanding of what Chris needs to be successful (which is mostly just a little patience and compassion, when you get right down to it). 

Part of our strategy with creating opportunities for social engagement includes creating an atmosphere of advocacy, and the more kids and parents in the community that know the family, the more likely they are to treat Chris with compassion. Putting ourselves right in the middle of the action makes it less likely that Chris will go to a school or neighborhood function and find himself among strangers. 

5) Chris attends a gymnastics class outside school. Strenuous physical exercise is vital for all of us to stay mentally and physically fit. Most kids participate in physical education in school, and that’s great. A lot of kids choose extracurricular sports as well. Luke is set up for Spring Soccer, and he’s awesome at it. But Chris doesn’t do group sports, and a lot of kids on the Spectrum don’t. Looking at it as a mom watching her son, the game moves too fast. The other kids get the rules and run around in seemingly arbitrary ways, and Chris has no idea what’s going on. OK, so group sports isn’t his thing. But he has to have a physical outlet somewhere. What happens when he doesn’t get exercise? An increase in the fluttering and hopping self-stimming behaviors. Why? Because that energy has to go somewhere. 

There is another compelling reason why gymnastics is good for Chris. Like a lot of kids with autism, Chris is very tall for his age. I have a suspicion that his bones grow more quickly than his muscles, so he tends to be inflexible if he doesn’t stretch his large muscle groups (arms and legs). Gymnastics gives him the chance to increase his flexibility. 

These are some of the social contexts we’ve introduced that have seemed to work for us. We have not sought out formal behavioral therapy or “special needs play groups” because we want Chris to have real-time, unfiltered peer-to-peer interactions, and he has the nuggets of social success already. That’s not to say that behavioral therapy and/or playgroups won’t work for other kids. But Chris, at 10, is getting a little old for “play groups.” Additionally, we would rather he cultivate relationships with peers in an organic environment (play groups tend to use more structured, scripted interaction activities, and Chris likes to “hack” scripted activities, so they are less useful for him than those he finds in the daily action of the classroom). If you want more information about how Chris “hacks” activities, let me know. It’s fascinating, and I’m still collecting observations about it. 

As Betty Lehman from the Autism Society of Colorado often says, “if you know one person with autism, you know one person with autism.” What works for Chris might or might not work for someone else. Our philosophy has been one of reaching out to the general population, exposing Chris to new opportunities for interaction, keeping him open to leaving his comfort zone to meet new people. As with any child, Chris’ teachable moments are everywhere; now, it’s a matter of spotting them and using them to best advantage.

Ian had a god-awful experience with my long-term (25++ years) dentist and his hygenist when he was about 4.5 years old.  It was prior to his diagnosis of high functioning autism…but still it was a bad experience for any kid.  I won’t go into a lot of detail but let’s just say we didn’t even begin to talk about going back to dentist until he was 7.

So we first started reading the dentist stories – what they do and tools they use.  Just to refamiliarize him with the process.  But in my heart, I knew we had to find someone new.  So I called around to a couple of pediatric dentist offices.  Told them our situation and a couple of the front office people said the right things, but when I asked about being back in the treatment room with him, they hesitated. 

Not Dr. Erin Carpenter’s office.  Her front office staff said “of course!  Would he be better off with an end of day or beginning of day appt?  We’ll keep it to just him so he doesn’t feel overwhelmed that hour.”  Wow. 

We went in for a meet and greet and if he wanted, a cleaning.  They let him touch everything.  Use mirrors to see what was going on.  Explained in however much detail he wanted on what they do and their tools.   They did x-rays…he was so excited about the pictures that after several tries (and much patience on their part) when he saw his first x-ray, he was able to stand absolutely still to get the whole head x-ray.  (“Wow Mom!  I look like an alien!!!”)

Fast forward 6 months, we go in for a cleaning and he’s got two cavities – one that hadn’t shown a clue six months ago and has become huge and a very tiny starter cavity.  Dr. Carpenter was mystified on how fast the big one had grown. 

Come back a few days later so we can get them filled.  Ian decides he wants to try the nitrous (part of his awful experience last time).  So they explain in detail how it might make him feel – he decides to go ahead. 

An hour and a half later we have one crown (yikes!) and one cavity filled…and a boy who thinks having a metal tooth (in the back) is cool! 

I cannot begin to say enough good things about this practice!  They get it.  They understand that every kids needs to be approached differently and some kids need more than others. 

Most importantly, I am so proud of Ian, because he overcame something he was deathly afraid of and is now extremely proud of himself. 

I am too.

I’ve been giving this some thought lately. When you live in a family, any kind of family, you end up having to work with/around other people’s behaviors. The difference, when you live with someone with autism, is that you’re coming at behaviors from different perspectives. It’s still communication; it’s still interaction. It’s just that you go into it with a different set of expectations.

Parents raising kids with autism have to get out of the house just like parents raising typical kids. Everybody needs a chance to recharge their batteries (this includes the kids, too) around other people. The problem with autism is getting a babysitter to show up twice. After going through all the teenage girls on our block, I can attest to the fact that it gets demoralizing to have to listen to adolescent girls stumble around for nice words to say, “I do not want to babysit your kid because he’s confusing and a little scary” when I know my boy and his behaviors and how good he actually is. It feels easier not to try to go out instead of feeling like you have to beg for a little time to yourself.

But it’s necessary. For you and for him or her or them…completely necessary and completely healthy.

Enter flexible thinking. Instead of reinforcing the rigid thinking patterns and scheduling you—and because they learn what we model—your child can fall into, you need to shake things up. You need to be able to think straight for a moment. Your child or children need to be able to behave themselves around strangers, other kids, and other adults. They need the exposure to new experiences.

And, like most of your experience with autism, it takes repetition: it’s not a one-off “oh, great, now my kid knows how to deal with other kids” experiment. It’s a process. You have to provide the opportunity to expose your child to other people repeatedly and let them succeed (and fail) repeatedly before it becomes part of the landscape.

If babysitters don’t work, and you’re sick of hearing from your MIL how your husband never behaved like that when he was little, it’s time for a new plan. In the Links section, click the Gimme a Break link. The Autism Society of Colorado trains caregivers who specialize in respite for parents (this means the caregivers know what autism looks like and understand what to do). Give them a chance, give yourself a chance, and give your kid a chance to do something new. If it’s scary to bring a stranger into the house, do it anyway.

Also in the Links section, click the Club 4 Kids link. They are a drop-in care center. They don’t specialize in autism, but they are run by moms, some of whom are special ed instructors in the public school system. They have recommendations from the STARS program here in town. They have asked me to let you know that they are willing and able to care for your autie or aspie with compassion and understanding. I can vouch for them because we’ve been taking Chris and Luke there for about 8 years and have never had them call us in the middle of dinner because they couldn’t cope with Chris’ needs…it’s never happened. Imagine a whole dinner…out…without being a spectacle. It’s beautiful.

And then, go pick them up or go home and kiss them good-night. You will feel refreshed and be ready to handle the next onslaught (there’s always a “next” onslaught), and you will have opened the world a little for your child or children, too.

“Flexible thinking” is one of the terms we learn as we move through autism. It seems one of the most important skills people with autism struggle to learn is how to change mental direction. I had an epiphany the other day, though, while that thought was rolling around in my head. People with autistic brains possess a specific kind of rigidity of thought, but so do people with typical brains. But sometimes we manifest that rigidity of thought in different ways.

We typicals spend a lot of time daydreaming with random thought bubbles sidetracking our tasks, or multitasking to try to accomplish more in a given 24, and I think that’s part of the reason it’s difficult to talk to us in a casual setting. While the autistic brain wants to exchange information in an orderly fashion and then get something productive done with that information, the typical brain skips through the field, gathering daisies and chasing butterflies.

Moms in the room, see if this sounds familiar: you need to tell somebody to complete a task, but the person who needs to complete the task can’t maintain eye contact long enough for you to finish your instructions, and you finally…

  1. Shout at the person to get them to pay attention
  2. Give up and stop trying to get through
  3. Do it yourself because it’s easier than this painful exchange
  4. All of the above

Now comes the moment of my realization: Chris does the same thing with me, it just looks a little different.

He was a little embarrassed to tell me the other day, “Mom, you talk too much.” Guilty as charged. I do talk. I want clarity, but I go for word count rather than quality vocabulary sometimes…I probably sound like Charlie Brown’s teacher sometimes: “Wah wah, wah waaaah.” That’s something I need to work on, even, and maybe particularly, when talking to my own typical peers: note to self.

So, picture if you will, the inverse of the above situation. Chris needs to tell me about something he wants to do. But I’m in “morning routine mode.” That means I’m making breakfast, making sure both he and his brother are dressed (that includes socks and shoes, Mister) and have their lunches ready (and there’s more than a juice pouch and a granola bar in there), that their backpacks are all packed up, that the cats have food and water, that Karl gets out the door with a sammie and a kiss. In other words, my typical brain is in many different places at once, and I don’t (can’t, won’t??) spare the time to stop and listen. I’m not maintaining eye contact (I’m looking into lunchboxes, backpacks, breakfast plates, coat pockets…) and not paying attention, and he finally…

  1. Growls at me
  2. Completely shuts down and refuses to talk at all
  3. Goes and does what he was trying to tell me he wanted to do (even though it’s totally not the appropriate time for it)
  4. All of the above

Hmm. And if we play the tape forward, what happens? I finally start paying attention when it’s too late, and he’s “doing something he’s not supposed to be doing.” I missed the boat because I didn’t pay attention, much to my chagrin (and here I am, trying to teach him that paying attention when I’m talking to him is important, and I don’t return the favor…yeesh). Instead, I start paying attention when he’s doing something “wrong,” and yell at him for not finishing his breakfast…teachable moment lost to typical brain’s rigid thinking. Not only did he not get to engage in successful social contact, but he got yelled at for taking initiative…

Bang head here.

My point is that we both need to be flexible, but since I’m the adult and the parent, I need to be the one to live that first and show how it’s done. I’ve had to learn that lesson a couple of times (see: told you it was rigid thinking), but it’s getting easier each time, and hey, if I can learn new behavior, there’s hope!


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