Wednesday, December 10, 2014

Soundified

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

Attitude

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.

Friday, September 12, 2014

Empathy

We have two new fur babies. Joey has been so excited about getting his very own cat, especially in the throes of still missing Luna. We finally brought them home.

This is Joey's kitty, Lily. She looks suspiciously like Luna.


This is Andy's kitty, Marshmallow. She is totally not shy. At. All. And she approves of the changes in her fortunes. 
At long last, we found our kitties, and Joey was looking forward to seeing her home safe when he came home from school. Andy and I picked them up from the shelter, and took them directly to our vet (do not pass Go, do not collect $200), and had our vet look them over top to tail. Lily was very good, letting her nails be clipped and the vet handle her. She got a clean bill, though she had some tartar on her teeth that we removed. Marshmallow had evidence of an earmite problem, but no mites. Her ears had not been properly cleaned from it, however, so she has a little yeast in the ear folds, very uncomfy. Our vet cleaned them really well, and treated them so the yeast will go away. Neither had any sign of fleas. Then we gave them both a monthly Bug Treatment (fleas, heartworm, mites, etc all covered by the treatment), just in case and just because its a good idea, and home we went to introduce them to Ellora.

Marshmallow has proven a bold beauty, looking over the house and already interacting with her new people. The only thing she's not totally approved of is the food, because hey, she's a cat. Fancy Feast just ain't fancy enough for her (or familiar enough for her). She jumps up and says hello, and has been very interested in Ellora.

Ellora wants Nothing To Do With Her. She comes over and stares at me, with the look of, "Mom, what did you do? There are whipper-snappers in my HOUSE!" I believe she is plotting my demise.

So Joey came home to Marshmallow out and about. But where was his Lily?

We found her. She has found a little space under a kitchen cabinet, and has tucked herself in there. The shelter said it took her a couple of days to calm down there. We expect the same here, if not a little longer. Everything new, her world torn up again. She was a turn-in; a family deliberately gave her up. The papers said she "didn't get along with the other cats." It also said she was in a house with five other cats and three dogs. The shelter had no problems with her and other cats, but noticed she hates loud and sudden noises- so we suspect she was terrified of the dogs. No wonder she's anxious. This is her third home, and she is smart to be wary. She's overwhelmed by the changes.

Joey was bitterly disappointed. He wanted to be able to pet his cat, and feed her, and show how well he could take care of her. He began to perseverate, to spiral into the abyss of disappointment and grief. All afternoon, he was so sad. At first we couldn't find her at all, then we found her tucked under the cabinet. I got her to nibble some food for me, but otherwise, she was not ready to come out to say hello. Joey was devastated. He sat downstairs, trying to coax her out. He managed to get her out for a few minutes by tempting her with treats, but then she ran back to her hole. He was beside himself, thinking he was doing something wrong. We kept assuring him that she would come out, he just needed to give her time. We tried to get him to think about how he felt when he was upset and scared, and get him to understand the cat was feeling this way. He wasn't buying it.

We finally got him calmed down enough to get him settled into his room for bed. I came out a little later to check on him. He was in his bed, reading his dictionary, surrounded by his stuffed Mario and Frozen characters.

"Are you OK?" I asked, and he returned the standard "um-hm" of "I know you want an answer but I don't want to deal with you."
"Do you want me to sit with you a while?" I offered, as this is sometimes something he likes when upset.
"No, I need my alone time."
"Oh," I nodded, giving him a smile. "Well, I just want you to know what a good job you are doing, taking care of Lily. Sometimes, taking care of her means leaving her alone for a little while."
"Like me telling you I want my alone time?" he brightened.
"Exactly."

By George, I think he's got it. 


Saturday, September 06, 2014

Week One of the Big Changes: Success!

I have to say, one week in... well, half a week, since Joey started school on Wednesday, so that's also when Andy and I started official lessons... and so far, so awesome.

The first week of school for Joey the last few years has always been... well, a disaster, really. This year? His teachers allow hugs. They help him, they guide him, they make it clear what their expectations are and provide him tools to meet them. They are busy teaching him those tools right now. He gets the attention he craves, and his fellow student thinks he's the bee's knees, and doesn't tease or otherwise make fun of him. Into Toy Story and Frozen? No problemo. You like words? Cool, let's look at word roots and definitions. You get the picture.

The result? Happy Boy who wants to get up and go to the school in the morning, two morning in a row, first week. Wow. More spontaneous speech. Telling himself stories that are not just scripts or episodes he's already seen. Half a week in, and I get the feeling that by the end of the year, I may have my Joey on the right track.

School for Andy has been a struggle of tears the last few years, anxiety of bullying from both students and unempathetic teachers. His third grade teachers figured him out. Last year's teachers never did, and I think they just wrote him off as a spoiled over-sensitive brat. Summer has been something of a struggle to get him used to home learning, and finding out interests we can target for interest and pleasure in learning. Saying "learn" around him risked shutdown. Asking him questions risked shutdown. I was getting very worried that this might not work, and then what to do? Sending him back into the hellhole is not an option, to be honest.

We talked. We looked at some materials. We toured the town and the resources for local field trip opportunities. He actually asked to look at some places, to get out and explore some. He asked to see the local museum. We read Ichabod Crane together, set up a game that teaches scientific method, and even did a straightforward math lesson, at a table and very traditional. No, it wasn't all sunshine and roses, but he did it. He showed interest. He demonstrated understanding. I think by Christmas, when his "deschooling" should be complete, we should be able to really get into what he needs to move along. Here in Virginia, he needs to pass an eval at the end of the year (either a portfolio or standardized test), so we will likely need to continue with math lessons in a more traditional way- I'm not really familiar with any other way to teach it- but we have plenty of resources here to make history, science, reading, grammar, writing, arts, etc. relevant and immediate. BY the end of the year, I may have my Andy back on the right track.

Folks, that's starting the year with a Win.

Let's keep up the good vibes.