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.

Sunday, August 24, 2014

Big Changes

Good news: Joey's school is officially licensed! He is set to start and is in the transition camp now! Can I get a "woo-hoo"?

Joey is going to Stafford Academy, and we are hoping for it to be as awesome, wonderful, supportive, and miraculous as he needs it to be. We have lost a lot of time, and there has been a lot of damage from leaving him in schools that just would not do what he needed them to do: provide an autism-specific classroom with trained autism professionals, and pull out to the mainstream classrooms as he was able to deal with those broader environments. They are doing it right behind us- but that doesn't help us. Now we need MORE support, not less. We have slid back into more and more restrictive environments, but not ones that included, all the time, people trained to deal with autism.

We have learned the hard way that autism is not like ANY other disability when it comes to learning. The uniqueness of the needs, the difference in motivations/reasons for behavior, the needed differences in responding to those needs and behaviors- they are so different from how you address these issues, that putting them in a room with kids with, say, emotional disturbance issues, causes huge problems. Massive, catastrophic anxiety and depression, specifically.

What we also learned- mostly from experience, but also from talking with our friends have actually had to go through these environments and therapies themselves- is that ABA isn't all that and a bucket of crackers. It's a tool (a key tool in working with kids who need to have tasks broken down and "chained" by practicing each part), but it can't be the only one in your box. Sending him to an "ABA school" without a lot of other supports, such as the psychological supports we can't seem to get for love or money, doesn't work well. Our disappointment in the Kennedy Krieger program cannot be overstated.

Stafford Academy is not an ABA school. It is an approach that immerses the kids in occupational therapy methods and interventions, addressing needs for sensory integration, stress management, movement (lots of movement!), and social thinking/skills. It will use Social Thinking in its curriculum, which you all know I love. Using lots of tools in the toolbox, the school provides a entire environment to meet the needs of autistic kids, with small classes so the environment can be individualized and effective for each child. They will be spending time out in the community, and as the kids become ready, they will hook up with local homeschooling groups for learning, community projects, and outings.

Sound awesome? We are hoping it will be. We are going to work hard to make it awesome. Joey needs it to be awesome. We want him to learn how to be happy again- not just in passing, but in his core.


Meanwhile...

Our other big news is Andy is coming home. He has been having trouble with bullying at school for years now, but we had no idea how bad it was. He is so emotionally brittle, and teachers are so not trained to deal with sensory issues that lead to being emotionally brittle, that I believe now the school adults were ignoring the signs of severe bullying- to the point Andy was learning to defend himself from these kids by bullying back. Not what we need.

I spoke to some other parents, and their kids, who were better able to communicate about the situation. One family actually moved out of the city, a decision they partly based on the serious situation in the classroom that no one would address. Apparently, if adults don't see bullying, they don't address it or even believe it is really happening. In a school. How long have these teachers been on planet Earth? Anyway, the reports from these families were far more dire than just knocking things off Andy's desk and a few threats on the bus. There was serious emotional abuse occurring, threats of violence (including sexual violence), racial targeting (we knew about that- Andy was really upset and confused by it), and a lot of things going on "under the adult radar" because it was not just jumping kids on the playground and covering them in bruises. Though we also had some of that going on.

On top of that, not understanding Andy's disability leads to bullying from the adults, both actual and perceived. This past year was particularly harsh in that regard, and the result is a child who loved books who doesn't now want to touch them. We've had a slide back in wanting to write and communicate. He has, in short, not only a lack of interest in learning, but an actual loathing of anything he views "educational." Say "learn" around my child, and you get a scowl. If you can get something from him about it, you are likely to hear the word "worksheets" and "stupid."

Andy has enough stress in his life, to be honest. Being Joey's family takes a lot of work and emotional energy, but it also takes physical energy. School needs to be a supportive, safe environment. He wasn't getting it in this school system.

I have already been doing experiments in his learning style, interests, and ideas. I've been working on putting together my toolbox. We have been deschooling, a process I hope to be through by Christmas. We are now, officially, a homeschooling family.

Talk about being someplace you never dreamed of being.

Wish us luck.

Friday, August 08, 2014

The Wild Ride

It's been a weird summer.

Remember back once upon a time when we were going spend our summer in Baltimore getting Joey all this wonderful help and therapy at Kennedy Krieger? It sounded so awesome. 8-10 weeks, and they would help him. We'd get some of the damage from the anxiety and depression mitigated. We were scrambling to figure out how to pay for it, where to stay, how to make it work. We sent back paperwork and held our breath.

We got the call back much later than we were expecting- mid-June, when we were under the impression from the doctor that he was keen for us to get started ASAP. But then we got slammed with one unpleasant truth after another.

The program was an intensive ABA program, with no psychiatric support. It got chopped down from that 8-10 weeks, where I would think even just an ABA program might be at least useful, to 4 weeks, then to 3. Then he was "too high functioning" for the main facility (because he wouldn't need nursing care... of course, they never actually saw him go into a spiral), so they were shipping us to a satellite, where it would be much harder for me to find somewhere to stay. Then, they wouldn't even be targeting the most important self-injury we needed addressed: the self-deprecation and self-harming threats. They might be able to keep him from attacking when he got desperate- but they had nothing for helping him keep from getting desperate.

One thing we have learned in our journey using ABA-based ideas and methods: you can replace a behavior, but you can't control what Joey will replace it with. That's one of the streams that fed our current situation to begin with.

I don't know if saying "no" was the right thing, but I do think we need to consider that "anything is better than nothing" may not be the way to handle support services and therapies. Getting "anything" isn't appropriate. You need to get the right therapies and supports.

I think the doctor already thought I was barmy. Now he's going to think I'm completely off my rocker.

Part of the reason I said "no" was that they came straight out and said they could not address the core issue. It was a big part. But there were other red flags for us. For one, the insurance was going to "cover" it (it was still going to be $1900) under "mental health services." The problem is, "mental health services" was the one thing they said point-blank the program would NOT HAVE. "Neuro-behavioral therapy" is apparently just a slick name for "intensive ABA"- and still ignores the root of the behaviors we are seeing, and need to get help for. I'm glad the insurance was interested in providing some coverage, because ABA is very useful for certain things. However, at Joey's age, without the psychiatric support, it would likely simply add to his depression- another reminder that he's "doing things wrong." Positive behavior supports and social skills/coping/regulation training are all great, but don't do much if you ignore the negativity exploding in my child's mind.

Anxiety and depression are strange mistresses. Kind of like Siamese cats.

Meanwhile...

Taking another strategy, looking to reduce stress and anxiety in Joey's day, we had our Big IEP meeting. It was the one that you have to stare the reality of the situation in the face and admit utter defeat in order to gain the victory your child needs: appropriate services and appropriate placement. After years of regression and struggle, the team had to agree that the current setting wasn't working. Joey starts at a special school on Sept 3, and we are crossing fingers and toes that it will work for him. It will be a small class, and he already knows and likes one of the other students. The approach will be sensory, movement, and OT-oriented, with Social Thinking as part of the curriculum, rather than being ABA-heavy- so they will address the roots of problems, not just the outward crashes. Stopping the spiral to the abyss before Joey goes over the edge just makes a lot more sense to us.

If we can locate psychiatric support, we may yet try the Kennedy Krieger program when a spot opens this fall. Until we have the crucial piece, I don't see the point of setting him up to "practice" being in a meltdown. It's not just about having resources, or services, or professionals, after all. It's all for naught if they aren't the resources, services, and professionals you need.

Monday, August 04, 2014

In Memoriam, Our Luna


Our Luna.
April 13, 1997-August 4, 2014.
We love you, Lunie Tunie.