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.

Another quick link post

Anyone interested in autism really needs to check out this blog. It totally rocks. I especially recommend it to neurotypicals out there who feel tied to the autism = tragedy paradigm. If you honestly read this young man's blog, I don't think you can persist in seeing the autism spectrum in terms of black and white anymore.

One more time

I know I've posted about Wendy Portillo twice already (here and here), but sadly it appears this story is not done with. Now it's turned into a court case pitting parent vs. teacher and those are usually pretty ugly. This case is too personal and disturbing for me to try to see from the teacher's point of view. If you teach special needs kids you have to feel compassion towards them. You can be frustrated that you don't have the time, training or whatever, but for me it's unforgivable to treat a 5 year old autistic child so cruely. Clearly, Ms. Portillo hates kids and it's time to find a new profession. Sorry, no compassion from me. If you even moderately agree, please read and consider signing this petition.

Positive note for the post? My special one is in an inclusive setting that is staffed by teachers that are nothing like Wendy Portillo. They care about him and all of the students in their school. We are very, very lucky.

image above: "Broken Heart" by Fabu

Don't cream twice?

In this on-line chat with Dr. Alonso one of the things that sticks out in my mind was the discussion about Citywide high schools. My interpretation was that he saw the need and value of citywides when he typed “There will always be a place for City and Poly and the others. They are great schools. I certainly benefited from an Ivy League education.” What sticks out to me was the rest of the statement – that the schools have to be held to a high standard and “don't try to cream twice!”

My first hand experience at citywides finished about 30 years ago, and my second hand experience has to do with a 9th grader who has no point of reference. I don’t think I’m an expert; I’m just a concerned party. That being said, I think the analogy is flawed. In my college experience they did cream twice – first the acceptance rate was fairly low and then the engineering courses had a pretty high failure rate. You could argue that failing a class doesn’t put you out of school, but in reality it usually does. Lost scholarships and financial aid puts you out of a school. Parents stop paying college tuition if you fail classes. There was no intervention plans or extra support. Maybe there should have been, but in the end you did what you needed to do or you figured out you weren’t cut out to be an engineer.I’m not saying that a citywide should operate in the same way, but it seemed to me that the threat of being sent to a school that you saw as less desirable was a pretty big motivator when I was at Western.

Another fallacy in the “once you accept them, you need to keep them” concept is that the current acceptance criteria are tough enough and fair enough to really know that these kids are going to be able to make it through four years at a citywide. Maybe an answer would be to have more/better objective entrance requirements.

I’d like to make these arguments to Dr. Alonso, but it seems to me that those with first hand experience (i.e. teachers from citywides with at least a few years experience) probably have a clearer picture of how things stand and how they are changing. It would be nice if some experts would give me some feedback here or better yet communicate directly with Dr. Alonso and let me know what he said.

The picture of Dr. Alonso was shamelessly stolen from baltimoresun.com