Choosing Joy

I'll admit to being rather sulky lately. It came on somewhere in the middle of a tsunami of stresses: Last minute middle school searches; Too many insane deadlines at work; A high school student not living up to their potential; Waiting for an acceptance letter; A trip taking one kid out of the country; Taxes; A brutal post on another blog; Continual questions about inclusion vs. special ed schools for a significantly autistic kid. I was so focused on staying afloat I didn't realize how grumpy I was becoming.

Over the weekend the usual family activities didn't bring me the normal enjoyment. On Sunday's walk in the park I found myself rushing msk instead of giving him the freedom that has made park time so wonderful for him. I worried about him climbing a tree. I didn't feel like scrambling up and down steep hills. I talked in a fairly unpleasant tone. Generally, I sulked.

Today at work I was just as grumpy. I had a bit of a meltdown over an email. Generally I acted like a jerk.

This is unacceptable and having now recognized my bad behavior I choose to stop it.

So in an attempt to turn it around I'll follow that Ian Dury & The Blockhead tune and list reasons to be cheerful:

• I got a phone call from my traveling kid and she seemed very happy
• Next year I'll have 2 kids at the same school
• Looks like the middle school selection process is over via a lottery win
• It should be beautiful by the end of the week & I think I've earned some time off
• A challenging job is way better than a boring job
• The DSL that was out due to rain is back up now

Maybe it's not paranoia

A lot has been written about this post by Smockity in the Aut-rent blogosphere. It would probably be best if you followed the link to the cached version and read it for yourself. Here's my take on what was written, both in the original post and through many of the comments that came later.

A grandmother was in a library with a child who seemed almost certainly autistic. The child was waiting for computer time and could not do so quietly and patiently. The grandmother seemed uncomfortable with this situation but did nothing to stop the child's talking and asking the current computer users (the bloggers children) if they were done. This story was portrayed with great disgust for the child and the grandmother. They were incompetent and rude and not civil at all. No words of help or encouragement were offered, just silence and a seething snarkiness that was fully explained in the post. The first 22 comments (and many more later on) were all on the order of "Yeah, what jerks, and you are the greatest for not saying anything to them, but we've all been there and despise those types of people." At comment 23 someone suggested that the kid seemed autistic. There was not a lot of compassion shown at that point, but quite a bit of defensiveness.

Reading the post and all the comments made me feel awful. I have been that hapless caretaker and I have felt those unspoken words of contempt.

Guess how long it's been since msk has gone to our public library? Close to a year, but our last visit is still very clear in my mind. We were waiting in line to talk to the librarian about the summer reading program and it was too much for him - lots of echolalic speech and running around the library and frustration that would have been screaming, if not a full-blown meltdown, if I had tried to get him to quietly wait. Eventually we made it to the librarian to be met with distrust. Why, if he had really read the books we recorded, couldn't he answer questions about the books? Looks from around the library, but especially from the librarian made me feel totally un-welcome. That was it for me and msk at that library.

Since then I've rationalized about it: We have plenty of books at home for msk to read. Who needs a stupid T-shirt anyway? Who am I trying to impress with the idea that my very significantly autistic child can read quite well? The hours of this library are always shrinking and computer use by teens seems to be the only usage on the rise.

So no, we don't go there anymore. I used to give donations to the library foundation - that doesn't happen anymore. Sometimes I wonder if I imagined the bad feeling coming from others in the library towards msk and me and my parenting. Smockity's blog post helped me understand that vast numbers of parents are judging us where ever we go. Thanks ever so much.

I know that practice and exposure are what msk needs to be successful in social situations. I know that the world needs to see more of msk and kids like him to gain an understanding of autism. Sadly I can't turn off my discomfort when people shake their heads at us or stare. And msk can't stop picking up on my discomfort and becoming more and more wound up in these situations.

There are a very few outings we do regularly - weekly grocery shopping, the post ice hockey Farm Store stop, in nice weather the playground - and lately I've been trying to take him for quick errands to pick up a pizza or run for milk to the 7-11. If I can keep it low key and ignore the odd look at his rather loud echolalic speech, these go well enough. I feel like we need to do more. Given my gained insight into what people our thinking about us, I'm not sure the gain outweighs the stress.

Sorry that this post is so negative. I just can't summon the energy to put a postive spin on this. Sure, there are supportive people out there, but at this point the negative vibes are just too overwhelming.

For a listing of other aut-rent's take on this post you can go here or here.

Spring enters, stage right

I think it might have to do with this being a horribly snowy and long winter, but the first day of spring yesterday was just glorious. It was a pretty normal Saturday - hockey practice, a math tournament for middle school student (MSS) with a celebratory dinner for a job well done. A walk to the stream in the park behind our house. Normal stuff, but somehow it all seemed wonderful.

The hockey rink didn't feel so cold. msk scored two goals in a drill with an actual goalie. I think he's got pretty decent puck control. I'm not sure about how he'll do when people try to take the puck from him, but maybe that's next season's skill to learn. I think I saw him picking up his left foot while he was skating, even though nobody said anything to him. Add on the good spirit amongst parents for spring and the upcoming tournament and new uniforms and progress made. It was a wonderful practice.

Then as I sat through the last round of the math tournament I was blown away by how sharp these kids are. Maybe America's schools are failing kids in terms of STEM (Science Technology Engineering Math), but for at least 160 Maryland middle schoolers there's a lot of real math knowledge being passed on. Maybe MSS didn't get a trophy, but the team was uniformly strong, ranking at #9. I eventually gave up on trying to solve the problems and just enjoyed myself.

There was enough time for a park visit with msk before dinner so off we went with the dog happily sniffing the path that we haven't been on for months. The wild flowers were greening up nicely with the first blooming celandines glistening yellow. I was happy to soak up some sun while msk enjoyed playing in the stream, first walking on stones, but eventually getting soaked in the icy water. We went home for a warm shower.

A quick stop on the way home from the math tournament had garnered grilling meat with MSS picking her favorites after doing so well. That lead to a wonderful dinner, the first on the deck this year. Thee smell of charcoal and the sound of neighbor kids playing in the background topped it off.

The first day of spring. No complaints.

Including msk

As we start looking for a new school for msk one of the big things we'll be looking for is an inclusive setting. When I was a student in Baltimore City Schools in the bad old days they were just trying to come to terms with the idea of educating kids who's skin color were different in the same schools. While I don't want to imply that that problem is solved it seems trivial compared to the idea of educating special needs student along with general education students. While you do here some of the same biggoted statement like "I don't want my kids to be educated in the same room with those kind of kids." or "Trying to educate those kind of kids is a waste of money, they just can't learn." On the whole there are more compasionate arguements against including special needs kids in a regular education setting. "The smaller classroom and specialized training will give them a better education." or "The regular ed students will harrass them."

What is come down to, though, is a legal right to be educated in the least restrictive restrictive setting that is appropriate for them. Msk has been successful in an LRE A setting for the last two years. He has been less successful in an LRE F setting previously and before that in an LRE C setting.

First, here's some vocabulary to help explain what all these levels mean:

• LRE level A -out of general education classroom < 21%
• LRE level B -out of general education classroom 21% - 60% of the day
• LRE level C -out of general education classroom >60% of the day
• LRE level F&G -separate public and private schools

When we decided it was time to move msk to a less restrictive setting than level F there was an arguement that maybe we should step him down gradually to find the least restrictive setting that was appropriate for him. I'm not sure we would have made the big jump if the school that worked out for us had a level B or C setting capability. They weren't a big enough school to handle full time special ed placements. Our level F setting made it clear that we could come back if it didn't work out and so we took the plunge. Looking back, I don't think msk would have been successful in a gradual step down process. Constant changes aren't good for him and it's clear that his general ed peeers have really helped his progress. A level A setting (with lots of supports) is where he's been successful, so that's his right. I'm not saying every school can support him so he can succeed in a level A setting, but we will be trying our hardest to find a school where that will happen.

So, besides being a legal right, why do I think that inclusion is the way to educate special need students?

• The first and most obvious reason is that we no longer live in a society where people are instiutionalized. Eventually, to whatever level they can, these students will need to live in society and they need to be working on that skill as early as they can.


• General ed students need to learn that there are lots of different people, some with some pretty major problems, but that we're all humans and we can live together


• When teachers learn to differentiate education for one child they learn that it's not thaat hard to do and that many students without IEPs can benefit from a tailored lesson


• A lot of learning in schools is peer to peer. A diversity of peers makes for the richest learning environment

I know different kids have different needs, but I think many special needs students are in more restrictive settings than is really required. The biggest driver is that all parties need to want inclusion to work. It's that desire for working with msk and seeing him as adding to their school that I'll be looking for in meetings with schools.

By request - the Consent Decree is over

I've never had a request for a post before. So here goes - my feeling on the end of the Vaughn G Consent Decree.

I've spent six + years as a parent of a Special Ed student in City Schools. I can say without hesitation that services and organization have gotten better in those years. If the point of the Vaughn G Consent Decree was punishment for being disorganized and removal of the Consent Decree is a reward for no longer losing track of services and students, I can agree with the current turn of events.

As a parent of a special needs student, I have slightly higher standards. I'm shooting for a Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). When that's happening for every special needs student in City Schools I think some sort of victory can be declared.

Who can honestly say that all students in City Schools have an "appropriate" education? I think violence in the school makes it impossible for anyone to have an appropriate education, much less special needs kids who are the most likely to be harassed in school (there's a good government bulletin on the subject here). And when schools are lacking the supplies and staff that they need to educate their students, is it possible to get an "appropriate" education? I know that these things aren't true for all schools or students in City Schools, but I think that for special needs students, especially those without strong advocates, violence, lack of resources and lack of trained staff is more the rule than the exception.

Without properly trained staff it's impossible to put a student in the Least Restrictive Environment that he/she is able to be successful in. School staff needs the time and training to adapt an environment. Supports need to be designed and purchased. This can't happen in a school that is chronically under-funded. When special needs students are put into the general population all of the teachers, staff and students need training to understand these students. It's understandable for an over-burdened teacher to resent this new demand on their workload, but what student can be successful when their teacher resents their presence? If their fellow students don't understand the special needs student the environment will naturally turn hostile and who can learn in that setting? In these cases the special needs student is being cheated of an education. In the end, if the student has someone standing up for them, inclusion is deemed as a failure and a more restrictive environment is where they end up.

So while I applaud the hard work that has moved City Schools this far, I'm not ready to declare victory.

So tired of it all

Two and a half weeks since my last post and that one was fairly angry and frustrated. The truth is, that after eleven years of mainly being a cheerleader for City Schools, I'm tired. I find myself unexpectedly trying to find a middle school placement for a kid with a very significant level of autism. I'm not finding a lot to be cheery about. We're just about finished with a middle school that could never make a place for msk. A school where we've spent five years of trying to feel like we were welcome, as opposed to "out-of-zoners." At this point, I've given up and don't plan on participating in meetings about budgets or fundraising. The high school seems to have turned into Payton Place - way too much politics going on and sadly I'm talking about grown-ups, not kids.

So - the next month or so will be about meeting with special educators and trying to get them to be honest about how willing they are to work to make a place for msk. Something that is his legal right and that I know is far from a given. Honestly, I'm not feeling too hopeful.

I know that I have no choice but to buck-up and smile and do what needs to be done. On this rainy, grey Sunday, I'd just rather go back to bed.