Hands

This post was triggered by "Quiet Hands", an incredibly moving post on Just Stimming by Julia Bascom



Hand-over-hand "guidance"

I realize that almost all child-rearing is a balance between a kid's comfort zone and the pain of stretching and growing. I believe that finding the balance of growth and safety is always hard, but it is even harder when you're working with a kid like msk, one who doesn't have the words to push back when you force a stretch that is just too painful.

We've made choices about msk's activities (therapy in behavior analysis speak) that probably put us on the coddling side as compared to some "Autism Warrior Mothers" ala Jenny McCarthy. Even though I have big issues with her approach and statements, I've got to admit that sometimes I feel guilty about not pushing msk harder, not attacking some of his autistic tendencies that hold him back, even if doing so makes him seem frustrated and overwhelmed.

We never got on the ABA (Applied Behavioral Analysis) bandwagon, partly because we didn't have the insurance coverage at the time for the massively expensive endeavour, partially because we have two other kids and a job and responsibilities that make the kind of time/energy commitment seem too hard, and partially because ABA just felt too coercive, or at least manipulative. It's exactly the kind of control and "guidance" that makes msk flip out. Still, when I see how hard some things are for msk, when I worry about what level of independence he will be able to achieve, I wonder if we should have tried harder to get msk into some sort of ABA program. The guilt usually comes after reading a quote like this - "ABA is widely recognized as the single most effective treatment for children with autism spectrum disorder and the only treatment shown to lead to substantial, lasting improvements in the lives of individuals with autism."

msk won't tolerate hand-over-hand, but hand pictures are OK

By chance I came across this post by an autistic adult. She writes movingly about the pain of being forced to have "quiet hands", of the suffering involved in coercive ABA therapies. It made me feel more sure of our choices.

I'm sure it's different for different individuals, and in no way am I saying that a choice to pursue ABA is a bad choice. I'm just saying that self-determination, even if you're on the severe end of the autism spectrum, is important.

It's something I need to keep thinking about as msk  becomes a teen.

Not good

The last 24 hours or so have been very frustrating. In an effort to keep from saying something that I will regret, I'm going to keep this post very short.

I have a picture that I drew that sums it all up.



A quick Visio diagram gets to the heart of the pointlessness of my existence

I've been doing this all for way too long and I'm ready for something that is less frustrating. Tonight I will try a new approach with a positive attitude and a smile. Right now though, I'm just ready to admit defeat and quit trying.

And you may find yourself...

cover from Ladies of the Canyon

Yesterday, initial plans for Child #2's summer came up. It's very early and all, I was just trying to figure out what has to come before what, with the idea being that she might be doing some lab stuff for a research project. I was talking to the woman that schedules a week long service project where she would be working on fixing housing for rural people in need. And this is her final summer at CTY before she ages out. It's all very exciting, actually.

Then I said something about, "We always go to the cabin for a week in August before school starts." Every summer, in the woods for a week or two with no TV and no Internet. This summer it was relaxed to the point that I didn't even post about it (but I did post last summer).

To which she responded, "Don't forget all that shopping for dorm stuff, and there will probably be some sort of orientation. And some colleges start really early."

Ooofff! It hit me like a sucker-punch to the gut. You'd think that working on applications with HSS would have made this seem obvious, but somehow I hadn't thought of it. This summer is not going to be what we always do. This summer is going to be all weird and scary and exciting.

Late last night

I heard the screen door slam

And a big yellow taxi

Took away my old man

Don't it always seem to go

That you don't know what you've got

Till it's gone...

lyrics from Big Yellow Taxi by Joni Mitchell

Please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

New Grading Policy?

There's a new policy about grades. It seemed pretty minor to me, but the way the information has been released (slowly and not via an email blast) tells me there is worry about people getting pissed off. I tried to find information on the City School website, but found nothing. This was decided over the summer, but nothing is getting released about it until the day that report cards are issued? Curiouser and curiouser...

Increasing class sizes, cutting budgets, getting rid of teachers happen without a blink. These things piss me off. Switching from an 85 to a 3.6 with whatever weighting for AP classes? Why would that piss me off? I can still tell the difference between a good grade and a bad one. Hopefully college admission people are even more expert with this type of stuff. What's the big deal?

I feel like I'm missing something.

One of my fellow Bmore Ed Bloggers has a post on grading here.

And on that note, please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

hhhmmm

Sometimes I feel like I'm stuck in some sort of PoMo exploration of how strange life can be.

Last night at dinner, Msk said to no one in particular, "I have trouble with speech."

Everyone looks up and stares at msk.

He continues while staring down, "Speech is difficult for me, I need to use this program."

This starts sounding familiar.

"I am using this computer to help me talk."

Child #2 says, "No you aren't."

Msk  looks up and grins. "Speech is difficult for me."

Child #2 says, "No it isn't."

Msk continues smiling, "I am using this computer to help me talk."

Child #2 says, "No you aren't."

Msk smiles wider, "Please be patient with me as I use this computer to help me."

This continues for several minutes with everyone smiling and laughing. At no time does msk deviate from the script.

A perseverative, echolalic reproduction of a speech aid that was designed for the non-verbal. Is that circular and warped enough?

And one more thing, this program hasn't been loaded on a computer for at least two years, it was probably two years before that when msk last used it, and he remembered every word and inflection. I remain confused and bemused.

Please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

STEM = hard

In an attempt to find something relevant and interesting to blog about I read a New York Times article about why so many students that enter college with STEM majors end up not getting STEM degrees. You can read it here - no paywall or registration required. Given that I'm currently trying to help my HSS get into a college with an engineering major this was actually pretty darn relevant.

So here's my take-away from the story. Even with motivation to want to go into engineering and a strong background in STEM subjects and good SATs and AP scores, getting through college with an engineering or science degree is hard going. The president wants to graduate 10,000 more engineers each year, but that kind of progress isn't going to be reached with only focusing on K-12 education and helping fund a college education. There needs to be thought in supporting and motivating engineering students through their college careers.

Some of the specific problems detailed in the article were:

• Non-stem classes have more engaging classes
• Non-STEM classes have higher average scores, and low STEM scores can push a student out of STEM
• Because of the amount of technical data needed, too little time is spent on applications which would engage students
• Engineering professors spend more time on bringing in research grants than designing engaging, relevant courses and labs 

Having gotten my own engineering degree in the 80's I can say that most of these problems seem familiar. I remember there were certain courses that everybody knew were supposed to weed out the weaker students. Even back then it seemed weird to me. Didn't they want a high graduation rate? I knew that learning these topics was hard, but couldn't they have provided more support? I know I took two courses pass/fail, and I passed them, but just barely. I remember one test where the average score was 23. This was a junior level course, so if we weren't prepared for it, there was no one else to blame than the school itself. And the teachers seemed to delight in saying things like "the rest of the proof should be intuitive to the most casual observer." He never got any questions after a statement like that.

One quote from the article that I found especially troubling was that "the attrition rate can be higher at the most selective schools, where ... the competition overwhelms even well-qualified students." I have a lot of faith in HSS, but some of the examples they gave, of students dropping out of engineering, they scare me.

On the other hand, I noticed that some of the colleges that we toured were following the directions that this article was pointing towards. There were some great engineering projects in the first three semesters at Drexel. There was a hands-on design and build team project at Lehigh. There was support for engineering students at UMBC. There were senior projects in developing countries or in alternative energy - topics that makes students see the importance of an engineering degree. I'll try to emphasize these things when HSS is trying to pick a college this coming spring.

Please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

Keeping parents out of schools

A while back I wrote a post called "Getting parents to come to school". Feel free to go and read it if you like. It seemed a pretty non-controversial post to me, but it got one reader so pissed-off that they said they were never coming back. I suppose the issue was that in his/her mind, schools already do all they can, that they are in no way responsible for any lack of parent involvement. To which my response is, maybe at your school...

So, I thought I'd try a post looking at the problem from the other side. What happens at schools that keep parents from being more involved. I'm looking at administrators, PTA/PTO leadership, teachers, or North Ave depending on the problem. I'm also going to say what I think a solution is to this problem, because no one likes a whiner who complains, but doesn't suggest anything that would work better.

• Have PTA meetings that go on and on, but really don't have any positive results that justify parents sacrificing their time to be there
• PTAs need to have real agendas and time lines and actions and responsibilities for each and every meeting. I realize that this is a lot of work and a lot to ask from poor schmucks that make the mistake of running for office, but I believe this is the number 1 reason people don't come to PTA meetings. If the school administration really wants to have a PTA, maybe they need to help develop these agendas, at least until the leadership can figure out how to do it on their own.
• Allow a single parent to monopolize all the time at a PTA meeting talking about something they care passionately about, but isn't on topic and/or doesn't follow the agenda.
• A PTA leader should offer to talk more about this after the meeting ends at which point they need to come up with an action plan that will drive this issue to closure that the aggrieved parent agrees to. Most times a parent repeatedly yammers on about something like this, it is because they don't see any change or progress being made. If it's a dead issue (i.e. can't be done) the PTA leader needs to own up to this and say (in private) that we can't talk about this any more
• Make going to report card conferences chaotic, rushed and hit or miss as far as talking to the teachers you would really need to talk to, often being blindsided by a problem at the meeting
• One solution would be to have teachers reach out to parents with the current grades and how concerned they are about specific students. Then have actual appointments with enough time to talk about concerns. Knowing that there's something important to talk about, the parent could juggle between various teachers and come up with a possible schedule that lets them meet with the right teachers. On the other hand, if there are no issues, maybe a quick email is enough and they can take conference night off and leave it to parents with bigger issues
• A second solution would be for the team of teachers to meet with parents, like an IEP. This would allow everyone to discuss issues and at a certain age would include the student.
• Have lots of fundraising, with no real idea of what the money is for, or after the fundraising, how well the fundraiser went.
• The solution here seems obvious - fund raise with a specific goal in mind, communicate that goal to parents, communicate successes and failures, thank everyone who pitched in. If that's too much to do, don't complain about poor participation.
• Whenever a parent calls to ask about something negative that they think is happening at the school, get defensive quickly and go on the offense against their child and/or the parent
• If you want involved parents, expect that their ideas of how things should be run might very well be different than yours. Understand that loving parents want to believe and support their students. Thank them for being involved and genuinely listen to complaints. This takes time and patience, but if you want to form a team with parents, you might have to engage in unilateral disarmament.
• Try to solve all problems at the same time with equal priority, or alternately (since the end effect is about the same) maintain that there are no problems and spend all the time you interact with parents on defending the status quo
• Brainstorm initially to identify problems, but focus and prioritize. Some issues that have real importance will be totally overlooked, but progress, momentum and a sense of accomplishment is worth a great deal, while a diluted message is confusing and discouraging.

Applying that final point to myself, I have clearly written too much and should expect that there's not a whole lot to take away from this post. On the plus side, it helps me meet my post a day objective.
For something a little more concise, check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine

How boring is it?

Lately I've been watching back to back episodes of Luther, first on Netflix for season 1 and then on iTunes for season 2. If you've never heard of it, you might want to check out the website. It stars Idris Elba, Stinger Bell from the wire.

The basic concept is hunting down psychopaths. Actually, it's a lot more complicated then that, but this is not a post about the series. I'm posting about Luther because of something from the last episode that I watched. The two bad guys had devised a way to communicate securely with each other across the Internet, while arousing no suspicions. I'm taking a course in cryptography and network security at the moment, so I was curious. They talked via the comment section of a blog. The world's most boring blog. There was no need to worry about drawing attention. No one would ever bother to look there.

My eldest commented, "Just like your blog. Schools, kids, PTA meetings - what could be more boring?"

The bottom line? Rest assured that your comments are secure.

Everyone in, no one left out

Pilfered from
http://www.girlscoutsla.org/pages/product_sales/cookies_general.html

I've blogged a bunch about Girl Scout cookies lately. I'm not sure if people who buy cookies understand what it's all about. I can't speak for other troops, but I can tell you what it means for our troop.

We are a very economically diverse troop, which pretty well reflects our neighborhood. We are not one of the troops that meets at a school and is made up of students from only that specific school. We are open to anyone who can get to our weekly, hour long meetings. We have decided to not ask parents for money, beyond the Girl Scout registration, which can be waived for financial needs. Every year we get a few requests to waive the ~$15 fee. Times are tight.

This means that no parent or child feels left out of an activity because they can't afford it. This is really important to me. There's a Girl Scout motto about supporting every girl.

How does this relate to cookies? The cookie sale is our one and only fundraiser. Our troop will be making 75cents per box we sell. In addition, Girl Scouts of Central Maryland will be using some of the proceeds to keep campgrounds operating. They also fully fund troops in economically destitute places like the Maryland Penitentiary, where incarcerated moms get to bond with there daughters through a troop.

Cookies allow our girls to budget, plan and chose activities. The girls lead and the adults support. The girls reach consensus on activities and prioritize them. Then we keep tabs on how the sale is going and reflect on what that means, what we will be able to add or will have to cut back on.

But even beyond money, I think cookie sales help our girls. Booth sales let girls learn about speaking out and interacting with strangers in a professional manner. Their personal sales teach them about organization and following up on commitments.

I should probably put some sort of fine print disclaimer here:
I am not a spokesperson for Girl Scouts or Girl Scouts of Central Maryland. The opinions and views I've expressed in this post (and every post on this blog for that matter) are my own. I haven't been compensated by anyone for anything I have or haven't said here.

So there!

Self advocacy

Image from Self Advocacy for Young Adults

I read a post on The Thinking Person's Guide to Autism a few days ago. You really should read it yourself if you wonder about disability rights for severely disabled people. Here's a link - it'll just take a few minutes to read (although the comments will take longer).

This, and some other posts from Autistics Speaking Day have got me wondering about when we should get msk involved in his own IEP meetings. He's getting older, and at some point he will need to make decisions about his life. On the other hand, lots of talking, especially about him, makes him uncomfortable. Trying to involve him in these types of conversations, by asking questions or prompting him to speak, is therapy, and pretty hard therapy at that.

One thing I love about his middle school is that they have team report card conferences for every kid in the school. These remind me of IEP team meetings, with much less paperwork and formalities. Even at that, msk attends, but is only pulled into the discussion occasionally. We look at his work and talk to his teachers. He moves between observing us from across the room (and listening, I'm sure, with his incredible hearing), and being pulled in to answer a question or display some work. I think he's at least a little uncomfortable. I know I am. But we plug through, and I believe it's good for him to see that we all care about what he's doing in his classes.

IEP meetings, though... I'm just not sure. There are a lot of people in a small place. The most useful parts of the meeting (at least in my eyes) are when we brainstorm about issues or problems or possible paths forward. We discuss, with smiles, about some of his special skills. I wonder if this kind of talk, even if we didn't ask for his contribution, would make him uncomfortable to the point of him acting out. And during the meetings, I really work hard on listening, taking notes, contributing, and thanking team members. I'm not sure I could focus that well if I was keeping an eye on msk and honestly, feeling a little uncomfortable about his interaction, or lack thereof.

It's got to happen at some point. We're talking about a kid who is at least as sharp as your average 12 year old. And we're talking about big decisions as we come towards a high school transition. We just need to figure out a way to implement something that  pulls him in in a positive way.

I'd love to hear some suggestions. What experiences do any readers have with significantly disabled students attending their own IEP meetings?

Please check out my fellow Bmore Ed NaBloPoMo Crew:
Epiphany in Baltimore
BmoreSchools
Maryland Math Madness
and The Smallest Twine