Moustache time again

So once again Baltimore City Schools are participating in Moustaches for Kids. This is a fun project to help raise money for specific projects at specific schools in Baltimore via Donors Choose. Donors Choose is a great idea. Teachers put in proposals and donors search for projects that interest them. The direct connection is wonderful. You get personal emails, detailed descriptions and you feel totally connected to the classroom that you're helping out.

What's the connection with moustaches you ask? Several brave men involved in City Schools (there's a list here) pick projects and grow moustaches. As time goes on they post pictures of their endeavors.

I've put a widget on the side of my blog for the grower I'm supporting - Nick Greer. You can also get to his page here. He's a great teacher - Baltimore's Teacher of the Year in 2008. He was also the grower I supported last year. By making a donation your are:

1. Supporting City Schools
2. Showing support for Baltimore's Teacher of the Year
3. Supporting teachers in Baltimore's schools
4. Letting me know that people read and are influenced by my blog

I admit reason 4 is pretty lame, so let's focus on 1 -3. Baltimore's schools need all the help they can get. Nick is an outstanding teacher. But for me the biggest reason is - Who can turn down teachers who are putting in extra work to support their students and student's in their colleges' classrooms?

"For Absent Friends"

Some words I wrote in comment on an Inside Ed comment (in italics below) got me thinking:

"Remove the politics from education" - you're kidding, right? What in the world is more political than education? We've got public education which is obviously funded by politicians with poor districts vying for fair funding vs. rich districts with a political formula that is used to decide funding. You've got the wealthy and those who aspire to raising their standing in the class structure opting out of a failing public education for an expensive private education. Is there anything more political than class structure? You've got parents and their tax dollars moving to districts with "good schools" and abandoning districts with "bad schools". You've got NIMBY attitudes about schools and students from neighbors who are victimized by crime (or a perception of crime in some cases) radiating from schools. You've got astonishing disparities in school buildings, technology, social service needs etc between schools and between school districts...

Having and raising kids is an activity that's bound to change your perspective on many things. My two "neurotypical" kids did a good job convincing me that the path I had taken (public school education while my non-public school peers and their parents were appalled) was really about the same 30 years later. In the same way that I could find ways to connect to people outside of public school then, my neurotypical kids have non-public school friends now. Because of them I have friendships with parents of non-public school kids.

The new perspective has come from my autistic child. Integration and inclusion were things that were new and were pretty idealistically approached when I was a student. For msk they are a concrete need and a legislated right. When friends that are parents opt out of public schools (and I've got to say about 95% of friends that I knew before kids have gone that path), they are opting out of letting their kids be educated alongside msk or other special needs kids. Special needs kids like msk will not be found in private schools, whether they are the prestigious ones or the liberal ones or the arty/experimental ones. No school that any neurotypical kids of friends attend, would ever consider allowing msk to attend. No homeschoolers will ever interact with him in an academic setting and the chaos of parties is not the place to get to know msk. Honestly, we don't attend too many parties with msk except those related to his school friends or family affairs.

There's a social justice issue going on here and I'm saddened that so few of my pre-kid friends can be directly involved. It's a passion for me - education is a right for special needs kids and for the economically disadvantaged that make up the majority of kids in Baltimore's schools. When friends opt out they push msk and myself out of their lives. I am saddened.

What made this weekend insane

I love my life and kids, and I'm not complaining, but I just want to write down the agenda from this weekend. This was an especially tough one because my dear husband was sick and incapacitated for the duration:

Friday

• Leave work early to make it to Fells Point to buy corn husks (middle school kid volunteered me to make tamales for a Day of the Dead party on Tuesday)
• Go home to whip up pot luck dish for a dinner meeting for elementary school kid parents
• Go to meeting with all 3 kids, older ones acting as chaperons - ends around 9:45 which is a late night for msk
• Get msk to bed pronto so he won't be a disaster on Saturday
• Count money and do book-keeping to prep for Girl Scout Cookie booth sales

Saturday

• Get msk to Special Hockey in Reisterstown - spend an hour cheering and encouraging
• Rush home so that msk can make it to a movie with his aide and classmates
• Rush to Girl Scout leaders home for cookies for a booth sale
• Spend 3 hours at a booth sale with high school kid
• Drop off remaining cookies and pick up pre-packaged salad for Halloween Pot Luck
• Take 2 kids to Catonsville for Halloween party
• Come home and take msk trick-or-treating - a challenge for an autistic kid, but he loves it
• Wait for midnight to pick up kids from Catonsville

Sunday

• Normal grocery shopping with msk while kid #2 does Sunday school & church
• Figure out some books that look new enough to give as a birthday present for a 5th grader
• Start laundry
• Rush to birthday party in White Marsh
• Spend 2.5 hours trying to keep a very excited autistic kid in line in a hyper-stimulating environment
• Come home and continue laundry
• Start cooking pork and Chile sauce for tamales, finish with kid #2 when she returns from youth group meeting
• Fix dinner
• Help get a school project to print-out right (adjust columns for a tri-fold brochure)
• Stay up too late doing laundry

Monday's plan (post script of the weekend)

• Take msk for a haircut- often a challenge for an autistic kid
• Roll & steam tamales with kid #2 into the wee hours

A letter to the system

With names and specifics removed, indicated by [bracketed text].

[City School Administrator #1] & [City School Administrator #2] -

I am writing you to alert you to a very serious problem in the City School's Special Education services.

I am the mother of a 10 year old student with autism, [msk], who is currently in 5th grade at [his current school] in a full inclusion setting. His disability is very serious, but because of a great IEP team he is able to flourish in this setting in a way that he didn't at a much more restrictive setting [autism specific school]. One of the key aspects of his success has been his IEP aide. [Msk] has a lot of trouble with communication and staying on task, and these are areas that his IEP aide directly manages. It is hard to over-estimate the value of his aide, yet twice in the last two months his aide has been replaced.

Without getting into the specifics of our current situation I'd like to talk about areas for systemic improvement as I see them. My son (and I'd guess most special needs students) needs stability and understanding. This is especially crucial in his relationship with his aide. The entire IEP team needs to be informed at the earliest possible time of any changes in personnel. We have been informed on the day of that the transition is happening. We need to know that these changes are not being made arbitrarily or for minimal cost savings, as they will have significant impact in my son's education. We need to be involved in the selection and training of any new aides, to minimize the disruption. There has been no visibility in the selection and no training for aides beyond what [his current school] has provided. My son needs to be introduced to his new aide before the old aide leaves and the aides must both work side by side during a transition period. Because my son must have an aide per his IEP it is the responsibility of City Schools to never leave gaps in his coverage, whether due to short term absences or aide replacement. This has not happened, and if it weren't for the flexibility of his current school in providing substitute coverage, my son would not be safe at school. All of these issues need to be addressed for all special ed students who have IEP aides.

I am sure this situation is not unique to our family. I know that there are special needs kids who are not getting the level of education that they deserve because their aides are poorly trained and are constantly being shifted. The idea that any displaced worker from City Schools could transition from office work to aide over the weekend, with no documentation of a child's needs, show the lack of importance given to the role of aides. I also think it show very little regard for the emotions of the special needs child. Because of the lack of communication I've seen with the school or parents, I wonder about the value being placed on my son's education.

A successful IEP aide is crucial to my son receiving a Free and Appropriate Public Education, as he is due by law. I am really happy that he is flourishing in a least restrictive setting, as again is his right. Without proper support and adaptations, he will not be able to attend a typical school. I really don't want to have to look into a non-public placement for him again. It is not his best setting and it harms City Schools by depriving them of a great kid and by forcing them to pay a private institution for his education.

I appreciate your attention to this situation.

Sincerely,

[A BCPSS Parent]

Sometimes it clicks

Last night, (on Maryland Public TV digital channel 2) I watched the most moving and meaningful and relevant documentary ever. It was called "Including Samuel" and was about a family's journey to understand what it means to have a child with a disability. Along with that acceptance, they found out about inclusive education and the disability rights movement. It's a journey that we've been on, although I think we got there on a different path. Their school system has been working towards inclusion for a long time, while it feels like we are blazing some paths, at least in specific schools if not the entire school system.

There's so much about this film that struck me. Even though Samuel was 9 at the time of the filming, disabled teens and adults were included and actually spoke for themselves. There was honest discussions from a sibling about how having a disabled brother brings him joy. Frustrated and overwhelmed teachers also had their say. The films showed people with profound disabilities honestly, without sanitizing the realities of their lives. I could go on, but I'm not sure it makes for an interesting post. Probably the best thing would be for everybody to watch this film, or at least go to the website about the film (where I got the image above).

There was one line from Samuel's mom that struck me - "Yes! I've felt that exact emotion!" She said that when she thought about all the things that the different therapists and doctors wanted her to "work on" with her son, it would take all the time she spent with him. She realized that would turn her into her son's therapist, and that in turn would prevent her from being his mother. Oh, I have so been there! Consistent rules between school, home and therapy are OK, but I want my son to know I love him unconditionally. At school he can have reward systems and points and other behavior modification. At home he needs comfort and he needs to be able to trust us. I'll read with him if he'll let me, but I will not torture him by making him constantly talk about what he's reading. At home, there's space for him to veg out and play on the computer and play with his siblings and draw and make music. These activities are not therapy. They are life and existence and comfort. They won't be eliminated from his life.

How cool is that?

So, here are some way cool pictures by msk

Anybody recognize Drummer Hoff? Don't feel bad if you didn't. I had to ask myself.

Sounds about right

So, Grandpa visited for a while last week. In the group mail he sent out to talk about how the trip went, he described msk as "still noticably autistic, but making strides in socialization and remaining very cheerful." Reading this made me feel good; it had been a nice, low-key visit.

In the past I've felt kind of guilty that people's assesment of msk always seemed to get on my nerves. I'm talking about the occasional visitor, not strangers in a store or the people who really get to know him and us over time. Somehow, regardless of what they say, it seems wrong. Sometimes they minimize his disability - "in a few years no one will think of him as autistic, they'll just think he's a unique individual." That seems unlikely to me, and besides, we live in the now, not hoping for the future. They exude pity - "oh the poor thing; how hard for you; I'm praying they'll find a cure." Actually, it's our normal day to day life, and I've come to terms with it and am generally pretty happy. Those are the typical statements, at least from friends. I know they mean well, but they leave me feeling frustrated and misunderstood.

In contrast, my dad's description seems simple, to the point and accurate. I smile when I think of it. And he sent it out to the whole extended family. As my high school student says - Epic Win!

Somewhat delayed

I've been meaning to post this link for a while and realized I never moved it from draft to post - whoops. So, a little late, but still quite moving. And for a change of pace, it's non-autism related (although still disability rights and City Schools relavant).

If you're looking for an inspirational magazine article, try this one:
Baltimore Magazine - Helping Hands

If you're looking for an inspirational blog, look here:
Health, Interrupted

Argh!!!

Here's a post that is not even a little positive. It also is only marginally related to kids or school issues. I would feel guilty about posting it, but I'm starting to feel like nobody actually reads these posts (no comments for about 6 months), so really, I might as well post just about anything that comes into my mind.

I hate doing laundry - it's the epitome of being stuck in a loop - wash, wear, get dirty...repeat until it's time to buy new clothes.

In the interest of doing less loads and saving water I was a "early adopter" of an HE washing machine. You know, the front loaders that are supposed to be high capacity, low water. Even after doing my research in Consumer's Reports, I am screwed. A year ago we put in about 50% of the purchase price in getting the thing fixed. It's broken again. Same symptom. Generally getting electronics fixed these days is a bad idea and I'm beginning to see that high tech washing machines are actually electronics.

I have precisely 5 days worth of uniform shirts for the two schools that require uniform shirts. Laundry is not optional around here. Stinking trip to the stinking Laundromat on a Sunday afternoon. I am not a happy camper.

Life sucks, and the stupid, who knows how long it will take for the repair guy, appointment hasn't been made yet. Stupid...arrrrr....I'm so mad I can't see straight.

So there - I've vented, nobody cares, grahhhhhaaaaa.

------------------------------------------------------------------

2-Oct-2009

Looking in the drainage sink, I think the out-take pump is clogged with wool fibers. I'm being cursed for that single hat that I felted, I fear. Now the question is do I need to take the pump out to get those fibers out or can I just push enough water and de-greaser through to get rid of the clog? Do I want to chance taking it apart, or should I ask hubbie, or should I call the repair man? Such an array of unpleasant choices.

I've got a problem with it...

I try to stay out of most of the political stuff related to autism if at all possible. It's not that I don't have an opinion, it's just that it seems like a distraction from the tasks at hand: 3 kids, 3 schools, IEP meetings, autism waiver, special hockey, homework, girl scout cookies... you get the picture.

Sometimes, though, it's just so over the top that I can't look away and move on. The Autism Speaks video above falls in that class. I could go through and refute the claims made about autism (I think my marriage is holding up well, I pretty much always get a good night's sleep...), but that's not what really bugs me. The real point isn't the generalizations given at the beginning of the video, it's the attitude that as long as someone is autistic, their lives, and the lives of those that interact with them, are a disaster.

As I said in previous posts, msk is definitely not "mildly autistic". He's not able to pass for normal and he has a lot of difficult behavioral issues. My family's life is significantly affected by his disability. Nobody who has met us would say that his is not "really autistic". Does this mean that I think of our lives as a disaster? Not at all. I love msk to his core, and as far as I can tell, that core is autistic. I love his impossibly intricate pictures that he can draw only because he looks at the world in a different way. I love his unwavering focus that is beyond anything a neurotypical could manage. I love his totally honest emotions - I'm never unsure about how he feels. There's much more in that vein, but I think you get my drift.

The first half of this video is permeated with negativity towards our current life. The goal espoused is to be different. The way I see it, is life is the journey, not the destination. With a focus on being "cured", everything msk does is now (when he's clearly not "cured") is wrong and depressing. That attitude requires constant corrections, without joy about his specialness, which is hard on him, and I think, just as hard on those working with him. One behavioral tech, working with my son for over a year, has never once talked about any positive aspects of msk beyond behaviors that she has changed. I really don't see how to keep productive work going with this attitude.

I feel bad about slamming this video because it shows the worst side of Autism Speaks, and not everything they do is negative. On the positive side they have a lot of great resources on their website. They provide support for parents, and a unified purpose and that purpose reduces isolation. But as the wave of autistics grow up, the autistics' perspectives must be considered. Even though msk doesn't talk a lot he knows and listens when people are talking about him. When this discussion is negative it hurts him. This video is hurtful, and just as I want to protect him from hurtful statements at school, I want to protect him from this video.

I guess when you come down to it, that's the problem that I have with it.