Friday, January 02, 2015

Shades of Grey

"You're driving too fast, Mom. The speed limit is 45. You are going 52. Speed limits are made to keep us safe."

Joey has hit the age when he realizes that driving is cool. It lets you go places. It puts you in control. The driver's seat has always been a fascination, but now it is generalizing to the idea of growing up and gaining freedoms.

We are driving to the dump. My mom doesn't have trash collection, so Joey is with me to do a Trash Run, where he can help me with the bags (tossing them into the big compaction hopper is awesome heavy work) and watch the trash be compacted away. It's also a Ride Alone With Mom, which is a treat; he gets to sit up front with me and ride.

"I'll never drive," he says suddenly. His voice loses the mechanical quality at its edges for a moment, a pause in the general driving script to make an observation. But I know this new tone, too; and I suddenly feel that turn in my stomach that always accompanies it.

"Of course you will, Buddy," I assure him. It is the expected response, and I want him to feel the familiarity, the cheerfulness, the casual air of my response.

"No," the grief in the word could be a whole conversation, but he goes on. "My age limit is twelve and under. I will never be a teenager. I don't have a birthday."

It's a tone that makes you want to leap out of your soul and hold him, until all that pain he is expressing goes away. I have never figured out why he is sad, or why it comes out when it does.

Instead of holding to the tack and spiraling into the abyss the conversation teeters upon, I decide on something else.

"There are three basics of driving," I put in my lecture-voice, "The two pedals- this is the gas, this is the brake; and the steering wheel." He stops, his head tips to one side, he looks at my feet.

"The gas pedal makes it go faster. The brake pedal makes it stop," he chants.

"One thing to remember about a car- it is made to move. So you don't even need to press the gas pedal to make it go- you just turn it on, and it will move forward. You press the gas pedal to go faster. To go slower..."

"You hit the brake. Not too hard!"

"Not necessarily," I grin, throwing in a little wrench to get him thinking. "All you have to do is stop pressing the gas pedal. See?" I take my foot off the gas, and we slow down. "You use the brake when you have to stop faster than just letting up on the gas lets you."

"I'll use both my feet to drive," he announces, still look at my feet.

"No, actually, you just use one foot," I observe, stepping on the gas for a moment to keep us moving. "When I want to stop, I just move my foot from the gas to the brake," I clarify, and demonstrate.

For a moment, he is fascinated. Then I blow his mind by showing him that after a turn, you just let the steering wheel go, you don't turn it back. He stares at my hands a moment, frowns, the script returning.

"The speed limit is 45. You are going too fast."

"Well, that's one thing you will have to learn about driving," I sigh. "Sometimes the rules bend. I know how to drive this road. If you are out on the Interstate, the speed limit is 65. But if everyone around you is going 70, you don't want to be a traffic hazard- you need to go 70, too."

This totally Does Not Compute.

"But the speed limit is the rule," he spits out in dismay, a phrase I have never heard him use before. In the face of the idea of rules that bend, but not break, I glimpse the black-and-white thinking that dominates Joey's world, in a way and with an intensity I have never really seen before. Perhaps as he gets older, he is expected to understand more about shades of grey, and so it is now more obvious.

He returns to the more comforting gas=go, brake=stop. Then he returns to never getting any older. No birthday. Twelve is his age limit. Its a conversation that I find terrifying, simply from the frankness with which he presents the idea of not ever being a teenager. That he will never learn to drive. That he will never have a birthday.

My stomach lurches. My eyes burn. I show him turning the wheel again. He is distracted again. Now he chats merrily about owning a truck when he grows up, so he can "haul my things easier."

And I search for my heart in the fog of grey.

Thursday, January 01, 2015


Sending you all hugs and great thoughts, and hopes for a fabulous year ahead!

Wednesday, December 10, 2014


When Joey was little, he came up with phrases that made him feel happy. Very often, by the time he started repeating them, the words were lost in a pool of sound, but they made him feel better, even cracked him up. It has been a while since we have heard one of these happy scripts, where he would repeat it just for the feel of the words in his mouth, and giggle hysterically.

Today, we have two.

"Steal Olaf's nose and feed it to Sven!" he chimed at me this morning. This was a vast improvement from yesterday, when he woke up grumpy and let me have it double-barreled from the get-go. The hysterics followed. I can still hear the fuzzy edges of the words, a sort of stuffy sound that I now recognize as the apraxia- but also a cue that the meaning of the words don't matter. It's the sound, the cadence of the words, the sharp rhythm that entertains him. The words no longer go to mush; this is a Frozen reference. Where the exact phrase came from, I don't know; always before, these phrases are ones he had heard, and became enchanted with the sounds. Certainly, it is a script, but the source this exact line is lost to me. Part of me hopes he has made it up himself, heard it in his head.

Scripting has become a problem most of the time- both of word and action. Stealing items as a "joke." Repeating "grounded" over and over- referring to punishments. Negativity, self-denigration, and depression have been a running theme. Profane language has become commonplace, and trying to correct it, vain. When I hear about police using force against people simply because the people used bad language towards them, my stomach does somersaults of fear. He bolted form the house twice this past week- what if a police officer had found him in that state?

I welcome the return of soundification. To celebrate, I turned on Frozen for him this afternoon. Then I gleefully listed to him soundify and giggle for an hour.

Music. Sweet music.

Saturday, November 15, 2014

A Study in Boy Face

What difference does it make to have support, appropriate teaching, appropriate education settings and levels? What difference does individualization and understanding make? 

It makes for these.

Tuesday, October 21, 2014


Well, here it is, October. The seasons change, the light slants through the sky at different angle, the air chills, the leaves fall, and Joey goes bazonkers. I am pretty sure the season change is part of the problem for him, because we have the same thing happen in the spring. When Joey gets off-kilter with the change of season, he can't help it. He feels it, and his frustration goes up, he goes into severe silly moods, the swings of mood can be dramatic. He doesn't like it any more than anybody else, but he also has no where to go with it.

Add onto that puberty. Then, a new school, and problems with regulation associated with change and increased academic demands. Plus, now that we think he is starting to trust the people around him, he is starting to try to process and express a lot of feelings, frustrations, and experiences for which he has no words. Yeah, I think you might go a little nutty, too.

This is the moment that tries a school's soul. For the last few years, that soul has come up wanting. And when the school comes up wanting, it is not longer a safe space- and the spiral goes rapidly into the vortex from there. When he starts acting out and expressing fear and anger from years of bullying, frustration, and difficulty communicating, how do you respond? Do you lecture him, suspend him from class, punish him? Most school settings do. What have you taught him when you react in a way that is punishing, negative, hard, cold?

That he can't trust you. He can't rely on your help, because you aren't going to help. You are going to punish, and just expect him to swallow all that horrible down. He learns you want him to shut up and go away.

We had our first blow up at school. What was the attitude of the new school?

Let's make sure he is safe. Let's give him ways to tell us what he needs. Let's make sure he has space to calm down, decompress, de-escalate. Let's teach him some new coping mechanisms. Let's find out what he is feeling, and help him express it. Let's hire some psychiatric help so he gets some support and therapy for what he is experiencing and feeling.

No panic. No suspension. No "he's got to have negative consequences for this!" No "I have to keep my staff safe!" with the implication of, "your kid is dangerous!" They shifted the positive reinforcement back to shorter time expectations, to give him time and support to learn new strategies, process, and re-adjust. The gave him time to calm down, then engaged him in a discussion of what choices would be good choices when he is feeling overwhelmed, scared, sad, confused, or even super-silly. We talked about things he finds calming, and how to make sure he has access to things like pictures of his cats, squish balls, and favorite games.

How's that for a whole new world?

And the result? He came home happy as a clam, saying he had a good day at school, and talking about Mom visiting and playing games with his classmate and teachers. He's still happy to go back to school and give it another try, every morning. Today wasn't a good day, but tomorrow is a new day.

He still feels safe and loved. That is the attitude he needs to succeed.

Saturday, October 18, 2014

Our Latest Adventure

As if I have lots of extra time for writing blog posts- evidenced by the lack thereof here- I have started a new blog for Andy's homeschooling and our experience with it. The Learning Squirrel will be chronicling our Adventures in Educating. Here's hoping it will be awesome.

Monday, September 15, 2014

The Elephant in Room

I did a little experiment this week. I commented on a story about Kelli Stapleton. For those who don't follow news, Kelli Stapleton attempted a murder-suicide of herself and her 14-year-old autistic daughter, Issy. She was well-known in the parenting circles, and a friend to many people I know. Like many such stories, this one has gathered a very specific rhetoric, the "for Kelli" crowd and the "anti Kelli" crowd. That rhetoric has become so strong and loud, it has drowned out any other ideas or voices, and everyone is expected to pick a side and then be torn to shreds by the other.

It isn't a very useful conversation.

Murder is not acceptable. Attempted murder is just murder that fortunately wasn't successful, so as far as I am concerned for these situations, the same thing. Murder was the intent. You don't kill people. I don't really care what excuses you try to give for that as a defense. It isn't one. The fact that I even have to say this shows how loud and strong this "for Kelli/anti Kelli" rhetoric has become.

What I found interesting in my experiment is the complete lack of interest in talking about the broader issues, about anything constructive, or about Issy. Every time, the conversation was turned back to "Kelli bad!" or "You're making excuses for Kelli!" I don't want to talk about Kelli at all. Plenty of people are already doing that.

I want to talk about Issy.

The subnote to the "for Kelli" contingent is often a call for "services for the family" and "support for the family." This often seems to be mistaken by the anti Kelli contingent as "support for the parents," when it appears what is meant is something more generalized as services.

Support is actually more than just services. Support is about acceptance, community, and feeling loved and welcome. That is what is needed.

However, what I suggested- and was choked out by the rhetoric- was that we don't need this primarily for the family, and not having it for the family is not an excuse to murder anyone. The person who needs support is the person with the disability. Issy needed that support. She needs that support. She didn't get it.

All too often, persons in our communities who are different, who have disabilities, don't get that support. You send them off to whatever is available for as long as you can afford, and hope. There is little mechanism for intervening and advocating for them if that is needed to keep them safe. Not just the Stapletons, people- in general. We need to talk about getting people help.

Getting that support in place, and in the community, is constructive and supportive long before we get to murdering them. Reduce the exposure of vulnerable people to abuse, violence, and murder, and you might find fewer are victims of abuse, violence, and murder. Reduce their frustration and help them learn and grow, treat them with respect, and you might find less frustration and instability in the first place, all around. Give the support, and the world becomes manageable.

Put the focus on the people who really need the help and support, and the other issues fade back. Improve the lives of people who need a little extra care and service, and their lives actually improve. It's an amazing thing.

But no one wants to talk about it.

And lest you think the static is just in the Stapleton case, check out the other cases in the news. If you want to see extremes in making excuses, check the case of the murder of Jude Mirra. Check out the rhetoric in the murder of Robbie Robinson (you have to search his mother's name, Angie Robinson, to find the stories... how sad is that?) Look at the story of Randle Barrow. Think of Alex Spourdalakis. These are just cases involving autism- but autistic people are not alone in this, they are not the only people being murdered, and their disability blamed. Where were the communities? The advocates? The interventions? The understanding? Read the way the articles are written- they feed into the pro-murderer/anti-murderer rhetoric. The murdered people are often barely mentioned, their full names subsumed under that of their killer.

Support isn't just services- there needs to be an entire social mountain moved.

We need to think about how we support people and think about each other. We need to learn what acceptance really is. We need to start with ourselves, because you can control the way you think, you can take responsibility for yourself. As we tell our kids and ourselves all the time: your are responsible for your body and your words. Learn how. Start now.