BAD (That's Blogging Against Disablism)

I really thought that after this post I was done talking about Alex Barton and Morningside Elementary. I had read some rather nasty comments on this news site (there are some particularly nasty comments here if you really want to see them) on the issue, accusing Alex's mom of being self-serving and questioning the concept of inclusive education. It took this post and this one to get me to realize all this attention in a crappy school in a state that clearly has issues with education was going to lead to reprocussions. It's hard to believe how vindictive people can be. Just in case you don't feel like reading the link here's a quick summary: While Alex has been pulled out of Morningside where he was clearly unwanted and unsupported, his 10 y.o. older brother Kyle continues to go to school there. This is the only school with a Gifted program in their zone. A letter from the principal told them to find a different school. The vice principal pushed Kyle. A group of parents picketed the school to show their support for an abusive teacher while yelling at Kyle and driving him to tears. There's a stalking parent and a billigerent teacher. Basically this family's abuse goes on and on.

I might be a little late, but I blog against disablism. This needs to stop. Our schools need to lead the way.

And on a positive note, I know of charter schools in Baltimore that could give lessons on how to be welcoming and inclusive.

Looking for a silver lining

Seems like a lot of doom and gloom lately. Sara Nuefeld is leaving the Sun, which really bums me out. I certainly wouldn't be blogging if it hadn't been for Inside Ed and and my whole sense of connection to City Schools as a whole (as opposed to individual schools and teachers) comes from reading and posting on Inside Ed. Then there's this disaster of trying to figure out ESY that I've already posted about here and here. Combine those things with the flurry of activities and stress of a jam-packed calender. I just want to bury my head under a pillow and ask the world to go away. But, having three kids doesn't give you that option (probably one of the better arguments for why would you want to have kids - you have no choice to stop being self-absorbed). So, the solution? A cheering post that reminds me of the good stuff. So here it is...

I can not believe the growth I've seen in those three kids over the course of this school year. The high school freshman, who seemed so ill-equipped to deal with the independence required of high school students has grown into the task. I won't say it wasn't without a lot of help from some excellent teachers (and maybe some parental engagement), but I think we've turned a corner. There are still final exams to go, which make me pretty nervous, but I'm feeling pretty amazed at the transformation.

The middle one is no longer a kid, and anyone with a hormonal middle school kid knows what I mean. It's a little scary and not too pleasant for anyone involved, but growing up can't be halted. There are moments when I wonder if brain function has slowed in an equal ratio to the speeding of physical maturation, but it's good to be on the far side of this boundary.

But the transformation of the special one, that's incredible. There are milestones that have been hit that I wasn't sure would ever happen. Today I saw a kid that wanted to impress classmates because they were friends - I would have never dared to hope for that, and within a school year? That qualifies as a miracle if I was religious. Staff that really goes to the effort to truly include and care. Blossoming verbal interaction - you might have to ask questions, but the answers aren't just a way to get you to quit talking (as they have been for several years). This kid has a genuine desire to get information across. Another miracle. And I've got to say that classmates and staff have been transformed as well. The idea that people who don't talk much don't have much understanding or intelligence has fallen by the wayside. And I see genuine affection and attachment going in both directions. You might have been told that autistic kids have no attachments (hence the term autism from the Greek autos or self), but I'd argue that it's a two way street - we nuerotypicals can't figure out how to make attachments with someone who doesn't have interactive mirroring as much as auties can't figure out how to navigate the rules of our society. But given time, training and practice and the attachments are real.

So there - the glass is definitely half-full or better.

Rant on...

In response to a comment on Inside Ed that stated that having an autistic kid in your class gets you a nomination for Teacher of the Year. Changes/clarifications shown in italics:

- snip (a preamble related to the original post and other comments)

The presence of autistic kids in your class is not a cross to bear that gets you nominated for sainthood. Now, if you actually do something positive with that kid, say differentiate instruction and testing to help them get something out of your class; if you educate yourself and the neurotypical kids in your class about autism and gain some empathy; if you provide a safe social situation for your autistic student and keep other kids from harassing or beating that kid...then you're a successful teacher of an autistic student. But, given the number of autistic students and the goal, one would hope, of having all of them in decent placements, this will not qualify you as exceptional; there should be too many teachers like this. If that's all it takes, I wish I had known and I would have nominated the teacher (and school and IEP team) who's doing all that for my autistic kid.

I am sick to death of the idea that it's a drag to have an autistic kid in your life. I've got one in mine and it's a privilege. I can't tell you all the things I've learned that are useful in dealing with so many other things than my autistic kid. I truly believe in inclusive education, but not in schools or with teachers that see my kid as a burden. With that off my chest maybe I can get back to my job.

Sorry, one more thing - don't assume that Mr. Greer (the Baltimore City Teacher of the Year that the blog post was about) has no autistic/aspergers kids in his class unless you have gone through his last 7 years worth of 503's and IEP's. You might be surprised at the number of smart and academically successful kids who are on the autism spectrum, of course that would mean that you quit making assumptions about autistic kids.

Update, or hope is not a plan...

Or you might be told something that appears to be contrary to the law (theoretically something that unilaterally limits the type, amount and duration, as in "the only ESY you can have is our ESY and our ESY is 4 weeks and is only appropriate for lower functioning autistic children"), in which case your choices are:

• take an inappropriate placement
• design and fund your own appropriate placement
• find a lawyer

Lovely options, eh? And supposedly BCPSS really doesn't need the consent decree anymore because they are doing such a great job at Special Education. Right.

Useful Information

Has anyone ever told you about limits in ESY (Extended School Year) services for a special needs student? You might be suprised by this quote from Federal Regulations Section 300.309:

"each public agency shall ensure that extended school year services are available as necessary to provide a free appropriate education "FAPE", consistent with paragraph (a)(2) of this section."

and

"in implementing the requirements of this section, a public agency may not: (ii) Unilaterally limit the type, amount, or duration of those services."

I'm not a lawyer, and I would never advise someone that they don't need a lawyer, nor would I give legal advice. But maybe, if you're very lucky, and the IEP gods are smiling upon you, it's possible that just knowing your rights is all you need...

...maybe...

...keep your fingers crossed.

There's a website with great information about legal rights as related to special education for autstic children at aboutautismlaw.com. There's also a page there specfically about ESY.

How to organize a family of 5

Warning - totally geeky post, not really about schools or school systems.

I'm usually pretty happy to try new computer tools. Generally they can be fun to play with, but few keep me using them over the long term and fewer still can I say have no downside. I started blogging about a year ago, and usually I enjoy blogger, but I feel guilty about not posting enough and I often wonder if anybody actually reads what write. More recently I started using Facebook. It's been a way to find old friends and facilitate communication, but I feel uncomfortable asking people to be my friend and I'm really not comfortable with being "friends" with my my skater-dude teenage nephew. I started twittering and I've got to say that I can't imagine anyone wanting to keep up with any status I can provide. I could continue with fitness logs, newsgroups and the like.

But I have found the best web-based tool ever - at least for my life. Google Calendar. Initially I was unimpressed since I already had a calendar on my PDA. Once I started using it though, I changed my mind. Finally there is a place for DH and I to jointly keep track of the insane schedule involved with three kids and three schools, a kid getting significant services under the autism waiver, PTAs, TWIGS, scouts, the occasional night out... all in one place that can be accessed at work, while watching TV on the net book, or at the coffee shop. DH no longer has the excuse of "having to ask my wife for permission" about any invitation he gets. And how about a shared calendars for the scout troop? And since one of the schools uses a Google Calendar, I can just copy over events onto my calendar. Absolutely no downside, except maybe the visual reminder of how chaotic my life is... but I'll trade that for no last minute questions about "what's happening this weekend?" that leads to realizations of conflicts and disasters.

Sometimes my own geekitude astounds me, but I'll take small, no-cost joys whereever I can find them.

A different awarness of autism

Some facts that you won't hear on most "Autsim Awareness" TV blurbs (stolen from Spectrum Siblings, but he says it so well I don't want to change it):

• There are autistic people employed in every imaginable profession.


• Autism is not a synonym for stupid or retarded. In fact, many autistics have average IQ’s, and some have IQ’s far above the normal range.


• Autistics fall in love, get married, and even have children.


• With proper support, most autistic adults can live independent or semi-independent lives. However, the majority of states have little to no support for autistics above the age of 18.


• Autism is incurable. But when asked, many autistics respond that they do not want to be cured.


• Autistic children have a profound effect on their families. Their siblings are more empathetic, nurturing, and accepting of other’s differences than their peers. Their parents learn to enjoy life’s small joys, and celebrate each new development.


• Although their expression may be atypical, autistics can still feel emotions. Autistic or not, it hurts when someone stares at you, calls you names, or belittles your existence.

A step in the right direction indeed

I've got to say I'm pleasantly surprised by this court outcome. I'm hoping that every person who interacts with someone on the autism spectrum is paying attention to the story of Alex Barton and Wendy Portillo. In summary - abuse a kid, get suspended and lose tenure. Appeal if you want, but this type of cruelty has consequences. As Alex's mom commented, “It’s a step in the right direction."

I think the majority of people out there are good and kind, but if you're not, or if you're feeling overwhelmed by your situation there is a lesson to be learned. It is not OK to be abusive towards an autistic person just because you have the power to do so. This case establishes a precedence of pretty severe consequences.

I'm also hoping that others who see this type of abuse take heart in this ruling. There is a reason to object to cruelty that is happening to your kid or that you see happening in your work environment. Your complaints can make it stop. Woo-hoo!

Autism Awareness

We're heading towards April, "Autism Awareness Month." Somehow I always have mixed emotions about this concept. Is Autism Speaks defining awareness in the same way that I do? Is autism awareness a matter of just giving everyone blue wristbands and raising money? Is it enough that people be made aware of the number of people that are on the spectrum that they bump into in a day? Or is there some sort of understanding required?

Amidst these mixed emotions I got an email from one of the Baltimore Saints hockey coaches, marking the end of the inaugural season of the team. The Saints are a Special Hockey team, with lots of autistic members. Here's an excerpt:

When my brother came to me and asked me to help I had no idea what to expect, but as I met parents and players I started to learn that this was going to be something I was going to look forward to every Saturday. As I talked to some parents this weekend in Buffalo I learned a lot about your children. There was a time when I went to a store and saw a child not behaving, all I could think was, "Wow, how could that mom or dad not handle that child?" Now that I have been with your children, all I want to do is see if there is something I can do to help, knowing that the child may be like one of the children on my hockey team.

I've decided that this coach is more than just aware of autism and other neurological challenges. He has a level of understanding, he's involved, and most importantly, he cares. Maybe that's what we should be shooting for in April.

Going on a trip

We're pretty excited about going on a big trip at our house. Sometimes though, excitement can turn to anxiety when you don't really understand what's going on. That's why I made a visual schedule. With a few whiteouts for anonymity (plus all of the pictures are from the web), here it is:

PS - If you know someone in the Baltimore area who would like to do special hockey (i.e. they have a traumatic brain injury or developmental disability such as Autism and Down Syndrome ) tell them to check out the Baltimore Saints.