Sunday, December 13, 2009

Happy, happy, happy.


You see to the left my arch-enemy.

Just a really quick post because this time of year is insane (book-keeping for Girl Scout Cookies, running the House of Ruth drive at work, buying gifts for teachers & aides and TSS's before the break, shipping packages to out-of-town relatives, making food for work holiday tables, going to work holiday parties, making gifts...you get the picture). Add to that fighting with my computer and IPod because of a virus (note to self - never put off renewing virus subscription especially when msk gets on the Internet and downloads all sorts of stuff all the time).

But that's not what I wanted to post about. Remember this post before, about my war with my washing machine. After weeks of grueling battles involving restarting and very slow drainage, I think I'm winning a round. I've done about six loads in a row without any error/pause/restart issues. It might not sound like much to some, but with a family of five, we generate some dirty laundry every week. Plus I hate doing laundry, so anything that prolongs the effort is evil.

I am currently doing the happy dance!

Tuesday, December 1, 2009

The path not chosen

So this study has put me on the defensive. Nothing like conclusions that point to things that should have been done differently in msk’s past to make me feel crappy. Should he have received 20 - 40 hours of intensive one-on-one Applied Behavior Analysis (ABA) per week when he was a toddler? Given that we had suspicions in pre-school should we have pushed for a quicker diagnosis and jumped directly into some sort of autistic boot camp? Should we have, then and now, followed him around with a notebook, counting and measuring and using every waking hour as an opportunity for therapy?

I could start with the fact that we didn’t and there’s no way to go back and therefore que sera sera. I feel like some people commenting on this study (over here) are in fact judging me as a “bad parent” so let me tell you why I feel ok about this path that we’re on. In no way does this mean that parents who have found a way to get intensive ABA have made a mistake, just that I don't feel guilty that we weren't able to.

Point one – We did go for evaluation as quickly as the normal system process allowed. There was the in-school evaluation, along with a follow up visit by city pschycologist. There was the several month wait to get an evaluation by Kennedy Krieger. There was the wait for the evaluation report. I cared and I followed up, but I was not the demanding parent who jumps ahead in line because honestly I was coming to grips with the idea of autism.

Point two – When the evaluation pointed towards Kennedy Krieger’s own preschool program I was skeptical. When I found out it was $40K for a half-day program I was even more skeptical. After a lot of long and intense phone calls it became clear that my very good insurance wouldn’t pay for this program. We also found out that there was a several year waiting list for the autism waiver that would have paid for the program, at which point he would have been too old. I decided it didn’t matter about my skepticism since there was no way he could attend.

Point three – This one might be sour grapes, but when I started looking more deeply at it, wrongly or rightly, ABA rubbed me in the wrong way. People are always quick to talk about autism robbing kids of their “human-ness”. ABA ,with its constant reinforcements seemed too similar to the dog training I had just completed. At this early stage in his diagnosis I was all about holding on to msk’s human-ness since I knew we were going to be much more closely involved for much longer than a typical parent/kid relationship.

Point four – As time went on I learned that one of msk’s biggest strengths was a sunny disposition. This drew people in to help him instead of being pushed away by his non-typical behaviors. One of the ways to change this disposition is constant microscopic analysis of his behaviors. I might not know how msk is going to function in society, but I want to know he will find a way and a place to be happy. It is counter-intuitive to me that he needs to be miserable now to be happy later. Life is a journey and not a destination.

Point five - Just because msk is autistic doesn't mean that he doesn't need the unconditional love and typical relationships with his parents. I'm not sure this happens if parents are cast as therapists. Add in two sibling that have their own needs for support from their parents.

On a more general note, I think we need to stand back and think about the practicality of this type of therapy. If 1 in 150 individuals are on the spectrum, how many really good ABA therapists are required in this country? If half-day preschool is $40K per child how much money is required to provide this for every child who needs it? Where are the cuts going to come from to finance universal intensive autism ABA therapy? Maybe I shouldn't ask that question, but it seems like it needs to be thought about.

So, I now have a child who is in a full inclusion setting and is on track (in my mind) to meet academic and social skills on a level with his peers with accommodations as required by his disability. Seems like a good outcome. Would the accommodations be different if he had received all the ABA that Kennedy Krieger recommended when he was 4? Who knows. Would he be able to pass for not autistic at this point? Seems doubtful, and I’m not sure if that’s really the goal we should be shooting for. If he was passing for normal, would every day and ever social interaction be painful and stressful for him?

So many questions and so few answers. Our choices are made and we move forward. Msk is loved child who is valued at home and at school. At this moment, what more can you ask for?

Advocacy, not anger


So, joy of joy, it’s time for another annual plan meeting. You’d think that the meetings for a kid with a lower level disability would be easier than those for a kid with a higher level. Honestly, I think it’s not as much a reflection of the child, as a reflection of the school. There are schools that feel that educating kids with IEP’s and 504’s is a legal obligation – something they have to do. As you might expect, this attitude leads to meetings where much is said but little happens afterwards. In contrast, there are schools that really see the value in educating kids that think differently. Schools that see these kids as an addition. It seems like this attitude spills over into valuing all types of diversity – racial, economic, gender, fast learners, slow learners, etc.

So this morning’s meeting is at a school where I'm not sure that everybody is on board about the value of kids that think differently. Already there are bad feelings about “special treatment” and that somehow a documented, diagnosed learning disability is more a matter of “not trying.” Not from the entire team, but from at least a few teachers. I’m all for holding kids responsible for their actions, but where is the responsibility on the other side? If the school has a plan for a student, shouldn’t they (down to the level of individual teachers) be responsible for reading and following the plan? If a student needs to learn through consequences, then should there be consequences for the school? Doubtful.

Hopefully this vent on my blog will allow me to go into this meeting as a peacemaking advocate for my child. To get what’s needed and what’s constructive and what’s legally called for. Take a deep breath, visualize good outcomes and… ready to go.

Post Script - All went well and I am left with a feeling that even if individual teachers have issues with special needs students, this is not a school-wide problem.

Thursday, November 19, 2009

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?

Thursday, November 12, 2009

"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.

Monday, November 2, 2009

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

Thursday, October 29, 2009

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]

Thursday, October 8, 2009

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.

Monday, October 5, 2009

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.

Friday, October 2, 2009

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!

Tuesday, September 29, 2009

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

Sunday, September 27, 2009

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.

Thursday, September 24, 2009

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.

Wednesday, September 23, 2009

Seeing the up side of things

One thing I've been trying to do lately on this blog is to have positive posts or at least positive notes on negative posts. Sometimes it's hard to do when you're involved in conflicts and struggles.

On that note, I came across a post on NYtimes.com called In Praise of Autism (after reading a tweet from @autismcrisis). The basic concept is that the autistic point of view can be very valuable in higher education and in information technology. The article seemed like old news, but the comments were what drew my attention. There were several people who felt that the article ignored the desperate plight of "low functioning" or "severely" autistic individuals.

Here's my response to that viewpoint:
I am a parent of a significantly autistic child. I'm not sure what his functioning level will be when he's looking for a job, but right now his disability is very apparent and often makes his life difficult. It also severely limits many of the things our family can do together.

I totally disagree with the commentors here that say if you had a severely autistic child discussions of the value of autistics in the workforce are a waste of time. I want my son to be included in society and included in a mainstream classroom. For that to happen society must see the value of my child and his potential. The discussion of the value of the different viewpoints those with Aspergers bring helps our argument. Although there is extra work to include him, there is payoff. Even if my son doesn't enter the workforce, the kids that have been in class with him will be more compassionate towards their co-workers who are on the spectrum.

On the other hand, the continual demonization of autism and how it has ruined this or that plan or path is not helpful to us. When it's implied that autism has taken our "real" child away from us, why should society waste it's time on the dregs that are left? As parents of more significantly affected autistic kids we have to convince society to accept our kids and find value in them. That means we have to do the same ourselves. The next step is to strongly object when anyone tells us that autism is (and by association, our kids are) a disaster and the only solution is eradication.

Just to make it clear - I love msk for the person he is, and that includes the fact that he is autistic. He would not be the person that I love if he were not autistic. In a similar vein, I would not be the person that I am if he were not autistic.

Friday, September 18, 2009

You'll have days like that

There are good days and there are bad days. Today? Not so good. We started with a kind of prickly pre-adolescent attitude - hard to get out of bed, objecting to school clothes, grabbing the IPod and some agitated echolalia. From there a path was set for a bad day. Friday's are always a little tough - it's the transition to a different routine for msk that's the problem. It's not that he objects to being at home, it's just the worry of a change. Plus this was the first 5 day week of the school year. Corrections at school were meet with way more than the usual level of opposition and lots of repeated instructions. This culminated in our worst daily log this year by far. After that there was long afternoon of trying to get under Dad's skin (which msk is pretty good at). When I came back into the picture it was after an insanely stressed day at work, and I wasn't up for it. So now we're all having some alone/TV/computer time.

When you get down to it though, this is what pre-adolescent boys are about, isn't it? They're prickly, confrontational, too clever along with thinking they're even more clever than that, moody and full of outbursts. I'm sincerely happy that communication home via log sheets is open enough that I know specifics about bad days. There was even a solicitation for suggestions/ideas so that we can have a unified approach when dealing with problem behaviors. It's hard to imagine some districts being willing to listen to successful strategies from home as opposed to dogmatic adherence to the autism therapy theory du jour.


Here's hoping for a good weekend and a fresh start on Monday.

Wednesday, September 16, 2009

Back on track

This morning's post on one of my favorite blogs really made me stop and re-assess. Least Restrictive Placements (LRE), Free Appropriate Public Education (FAPE), inclusion, becoming a contributing member of society - these are common goals for parents of autistic school kids. We do the best we can and we wonder about the cards we have been dealt and the choices we have made.

Some of our tougher cards are living in a school district that is under a court order because of how poorly it's done in regards to special education. Having a child with a disability of a level that prevents "passing for normal" is another. Living in a large city with a necessarily large bureaucracy is yet another. Sometimes I get so caught up in problems and frustrations that I forget how well things are going.

In the interest of realizing that the glass is way more than half full I'd like to list some really great things:
  • msk might be the only autistic kid in his school, but I've never heard anything but positive statements from staff and kids (excluding usual 10 year old boy stuff, which is actually kind of comforting because they treat him like a regular classmate)
  • when we thought we were ready for a less restrictive placement there was skepticism, but nobody blocked us
  • our team is willing to meet at our request about issues and listen to our concerns without getting defensive
  • positive stories and amazing observations always make it into our team meetings - it might slow us down a little, but it keeps us focused on the idea that having msk around is a delight and not a burden
  • our support system is awesome - older siblings and grandma who can baby sit so we get a night out, a state autism program that provides a tech for support outside of school (like aftercare for extra socializing time), Special Hockey for sports and teamwork, a nearby park for exercise and unstructured time

When we first started on this journey I wondered about changing school districts and I still get advice from people telling me we ought to move. Honestly I can't imagine it working out this well if we had had the freedom to move, or the money to pay for an expensive special ed private school, or if we could spend all of our parenting energy on one kid. Sometimes it all falls into place.

Saturday, September 12, 2009

Ghak...

I just realized that along with the maturity I mentioned in the last post comes hormones. Hormones and attitudes of pre-pubescent boys are just starting to hit our household for the first time. Add to that the lack of verbal skills of an autistic kid. Jeeze, this should be a fun stretch.

I don't think anybody's taking resignations, so there's no choice but to live through it. Wish me luck!

Tuesday, September 8, 2009

New year's stretch

There seems to have been a quantum shift between the summers when msk was 9 years old and this summer, at 10. Behaviors that seemed eccentric in the past are now clearly out of the norm. Part of it has to do with that lanky pre-adolescent stage - he's just not that cuddly little guy anymore. Another part is that he's not as quiet and withdrawn. There's often a constant stream of rather loud replays from computer games, Youtube, DVD's and emotionally charged events from real life.

At the same time, this summer msk wanted to go places and be with people much more than he had the year before. A lot of this I attribute to his school year in an inclusion setting. Lots of teamwork and acceptance has made him enjoy the public. A trip to the funky little grocery store by our cabin brought my kid an amazing amount of joy and excitement. That excitement meant that blending in was out of the question. So it became a summer of transformation for me as well - no more quick, surgical shopping trips. I learned to look for opportunities to talk about autism, giving people the benefit of the doubt. Sometimes the annoyed/confused stares gave way to connections and kindness.

I'd really rather blend into the crowd. And then meeting strangers' attention with trust and openness is also hard for me, but then I think of the challenges that msk faces every day and I know I can push through my discomfort. His whole life is a story of perseverance through discomfort and confusion. All of our social rules and feedback loops are a total mystery to msk while at the same time they are so intuitive and obvious to us that his difficulties are incomprehensible. But he finds joy in existence and moves through his frustration. Now it's become clear that slowly, slowly, he is drawn to become a social being. Perhaps not in the center of the action, more likely tangentially observing, but he is drawn in. These are changes I never expected. We'll see what comes next.

Wednesday, September 2, 2009

Trying to hang onto optimism at the start of a new school year

So here we are three days into the school year and I'm already having to call on all my reserves of patience and diplomacy. I have to go through the whole mantra - "I believe in the public education system. I believe in the right of all children to receive a Free Appropriate Public Education. I believe that all children have the ability to learn. I believe that with powerful advocates, every child can be successful in their education." - Breath in, breath out.

Why on earth would you want to uproot an autistic child - you know, the ones who are looking for order and stability in a world that is way too chaotic and unpredictable? Getting through the summer was hard enough. Where neuro-typical kids are joyful about a summer of unstructured time, msk starts having anxiety issues in those final weeks of school. Too many parties, too much free time... changes are coming and that's scary. Then finding structured activities through the summer for an autistic kid who needs challenges and stimulation from people who are open minded enough to value an autistic kid, while at the same time having constant supervision and support. It is a nearly impossible task and it wasn't achieved this summer. Maybe next time.

Regardless, we made it through the summer and for the last few weeks there have been beaming smiles whenever the conversation turned to getting back into the school routine. We had a meeting with the new teacher and worked out a plan of action. We had sent letters praising last year's team and especially his aide. Last year the school funded her training to learn about autism. She made a real connection with msk. Honestly, she was a big part of the reason that last year was our most successful year since pre-school.

We practically begged for her to be sent back to help my kid. When she showed up we were ecstatic. Then another aide showed up and last year's aide was sent on her way. So basically the bureaucracy feels free to drop in a new aide without considering the problems this would cause or caring if any of the directly involved parties (the parents, the student, last year's aide, the school's special educator and principal) knew what was happening, much less had any input. At the least we all would have just liked to have known ahead of time.

The only thing I can say is there appears to be consistency. This was exactly the way we were all treated when it came to ESY planning (that I posted about here, here, here, here and here).

I guess City School's new goal of reaching out to parents is for parents of kids without special needs.

Friday, August 28, 2009

RIP Edward Kennedy

Perhaps this post is a little out of character - a post on national politics and seemingly not particularily personal. Typically most national politics really doesn't affect my life very directly. I'd have to say that is not the case when it comes to the body of work that Senator Kennedy acheived in his career. Laws that have to do with the rights of the disabled have massive impact on my life and on the lives of special needs children (like msk) and adults. It's hard to overstate how different our lives would be if msk was not getting educated, which would be the case if there was no IDEA law. It's hard to imagine msk's future without the ADA law. These are laws that Senator Kennedy was instrumental in developing and getting passed. If you're interested in seeing his history in Disability Rights you need to look at his position page. If he had done nothing else in his life (and that's certainly not the case - he's dedication to almost all social justice issues is easy to see), he would be a hero to me.

Rest in peace.

Wednesday, August 12, 2009

Finishing up summer

Two and a half weeks until the first day of school. For the first time in years all three of my kids will be in the same schools as they were last year, so no new school anxiety to deal with. Another miracle is that none of the three schools disasterous placements, so we won't be spending this year making plans and counting the minutes to get a kid out of one school and into another. That's not to say that won't be moving into new schools a year from now, but it'll be because we've aged out as opposed to finding an escape path. That's a topic for future posts, for now it's time to coast into the end of summer.

Time for our ten days of vacation, away from the city and computers and such. Time for hiking, swimming, kayaks, reading, board games... you get the picture. I'm looking forward to some one on one time with my special kid where I am taught the beauty of time moving slowly. With autistic kids there's a feeling of perservative behaviors being a problem, a deficit. I've found that being with a child as they work on making sure every rock by the side of the stream is completely splashed is a lot like a zen meditation. Slowly you let go of the nagging worries and the plans and the voices. Finally you just exist in the now. It's pretty inspirational, really.


Tubing Broad Creek


My feet submerged, find sun amidst the shade
As rushing noise drowns calls if I would try
No matter – his response would not be made
I stand guard waiting for him to float by

The cooling water rushes - needs to go
The boy stretches my gaze, I stand and wait
Like Holden in the rye my time moves slow'
A catcher, lone and patient is my fate

When young I could not fathom how one’d dream
Of blocking cliffs so kids could play all day
I now find comfort standing in this stream
Sun warmed and water cooled I gaze and sway

In stillness watch, commitment holds no fear
In sparseness my true purpose becomes clear

Tuesday, July 21, 2009

Remember to count to ten...

OK, look, I know ESY is only four weeks long (which for kids that can't stand the 2 weeks off prior and the 5 weeks off post is actually a crime...but that's another post). I know that you can't expect a perfect fit or a lot of training from people who never meet with the IEP team or parents or even msk (again that's another post). I know that there are staffing and budget issues. But...

The one-on-one aide (or para-professional or whatever the current term is) is assigned to my child. Being with and guiding said child is their entire job. They are not an extra set of hands and feet to run errands for the classroom. It is not OK if they can't come to work on time. The IEP is not some sort of squishy guidelines that you can choose to follow if you want or if it's convenient.

OK. Now that I've vented it's time for the count to ten. Breathe... remember that this is short term and, following the lead of msk this placement is a positive thing. Breathe... only four days left. Calmer now... but if anyone tries to tell me how great special ed services are in Baltimore City, I think I might take their head off.

Thursday, July 9, 2009

Good news/bad news

Good news: ESY seems to be OK
Bad news: ESY started two weeks after school is out and my kid can't stand a two week break.

We started ESY this week, and though I was very skeptical about it being appropriate I think my special kid (let's use msk since I don't feel comfortable with names on this blog) is joyful at being in a setting with academic challenges and kids with social and verbal skills that are higher and so draw out more social and verbal activities.

During our two week gap, after school and before ESY, we had placed msk in a camp for kids with autism that qualified as respite care under Maryland's Autism Waiver program. We didn't need a break, but msk needed a daily structure that is impossible for us to provide. It seemed like a setting with people with a lot of training in autism and where msk would be in the middle or high end of verbal/social/behavioral issues would be a relief after nine months of being the only autistic kid in an entire school. That turned out not to be the case. This ESY setting with no other autistic kids (though everyone does have an IEP, so I don't think you could call it an inclusion setting) brings great joy, while the respite camp was merely tolerated. Who would have guessed that worksheets and sitting at a desk would win hands down over crafts and swimming?

I've been noticing that at this level of social development, msk needs to be around happy social situations, but is not able (yet?) to be in the middle of these interactions. There's a need to see, hear and occasionally have peers verbally engage, while still being able to move away to "turn down the volume" on the interaction if it gets too intense.

Here's hoping that I haven't spoken too soon and that we keep msk happy and engaged for the rest of the summer, or at least until ESY ends.

More bad news: ESY ends five weeks before school starts, and if two weeks off in June is bad, 5 weeks off in July/Aug is even worse.
Positive spin: Adding structure to my break from work (by which I mean early and often exercise excursions) helps me lose weight and keeps me from being a self-absorbed slug.

Tuesday, July 7, 2009

Private and home school options

I've been a proponent of public school since about 7th grade. I remember the condescending comments from kids on the other side of the Gilman/Roland Park Public fence in the mid 70's. Then there were clueless questions from private school Girl Scout troop members about race. No n-words were used, but there were clearly bigoted attitudes abounding at Baltimore's more elite private schools (i.e. Gilman, RPCS, Bryn Mawr). At that point a swore I'd never send a kid to a private school, and honestly I've always been very proud of my Baltimore City Public School System education.

This article though makes me wonder a bit. In impoverished neighborhoods in India, private schools provide decent caring education for $1 - $2 / month per child. These are parents who want a good education for their children now and who aren't willing to wait for some monster bureaucracy to figure out how to create a functioning public education system. This isn't just a phenomenon in India - around the globe in developing nations, where there are public school systems lacking discipline, with complacent teachers and classes in which students sit and chat instead of learning (sound familiar?) these type of private schools flourish. And, the students do nearly twice as well as students in public schools.

I think we know that involved and caring parents who value education are a big part of successful educational outcomes. While the idea of using money as a way to make sure your kids don't have to go to school with those kids is abhorrent, what about making sure there is an atmosphere that values education by asking parents to financially support the school? In a way, isn't that what Baltimore's charter schools are doing? The kids a charter schools have parents who care enough about education to look into charter schools. They need to have a some thoughts about education so they can find a school who's philosophy they agree with. They need to sign on to helping out at the school (even if they don't actually put in the hours). In other words, they are required to value and support their child's education - very different from what traditional public schools often get from their parents.

And the same things can be said about homeschooling parents. Clearly they care about education and as they come up with curriculum and lesson plans they are vested in their child's education. Sure, this is not an option for many parents and also for many kids. My special one, for instance must have typical peers in his class for him to flourish. But there are parents and kids that can choose this path.

This all sounds good, but how do we make sure the bar that tries to ensure involved parents doesn't block out kids that we need to be educated. How do we help parents who want better for their kids, but don't know how to accomplish that? Certainly having momentum in the community can pull people along. Does the occasional scholarship to needy kids to Baltimore's private schools help the community, or is it only about the individual child? If it is about the individual child, certainly a parent should make educational choices based on what their kid needs, but should we (as in society) put resources into helping those few children or do we need to find a way to pull in more?

Hard questions, but I think they are helpful to ponder as I try to figure out my own kids different educational paths and I look at the paths that other parents choose.

Friday, July 3, 2009

Grief



I'm not sure it's dead, but something I cared for, InsideEd, is not what it once was when I felt passionately about it. In looking back I've seen the stages of me coming to terms:

Denial - the Sun will see how bad this is and hire Sara back.
Anger - the people who are now posting don't care about City Schools
Depression - that's it, I'm never commenting again, no decent conversations...sad
Bargaining - if I ask nicely maybe they'll at least put some decent post up
Acceptance - whatever, I'll look at the blog, but the odds of me thinking out, composing and posting some of my better writing there on a near constant basis? not going to happen

Perhaps the better analogy is overcoming an addiction. Regardless, I feel I'm ready to move on.

Tuesday, June 30, 2009

Take action


So, I seem to get some amount of traffic on this blog. I'm not sure who comes to this site or if they actually read what I post, but in a sense of optimism I've added a widget in the top right corner that lets anyone who is interested follow a link to a petition on Change.org


As actions come and go I'll change the widget, but for now it has to do with restoring fairness to IDEA funding. If a parent is in conflict with a school system and has to go all the way to court there are a lot of expenses that they will incur. One is the cost of expert witnesses - for example speech assessments followed by testimony on the results. The bill in question specifies that the school system is responsible for these costs.


We've never had to go to court to get the special one a Free Appropriate Public Education, but we have had some disagreements and we have paid out of pocket for some tests and reports to back our argument. I'm happy that we could manage the finances of doing this, but it seems unfair to make having this amount of money a requirement for getting your child a decent education.

Saturday, June 20, 2009

Question


With school out it's ESY time for those of us with special needs kids in school systems. Looking around the aut-rent blogs on the web I can see that I'm not alone in feeling that ESY services are a little thin and that it's up to creative parenting, finding money and juggling to make something that will keep my special one together (i.e. "not regressing" as they say in IEP lingo) over the break.

My question is this - why are the rights and services and accommodations that were worked for over the school year, suddenly up for renegotiation (or actually thrown out the window) when it's the month of June?

I realize there are different teachers involved, but it is the same school system. If over the school year the definition of least restrictive placement is full inclusion with typical peers you would think the same thing would be true in the summer. If the team thinks that more than a week without structured activities would be a problem, you'd hopethat the idea of only four weeks out of ten for ESY would not be an option.

I know that across the US that poor ESY is the norm and honestly I haven't found anyone talking about a school system supporting a kid in the summer in the same way they do in the school year. All the blog posts (here, here and here for example) are about figuring out how to fight for ESY or how to manage on your own with creative solutions and they are inspiring. My question is more about why are we left so on our own over the summer and why is the law, that really doesn't differentiate between school year and summer, being so totally ignored.

I'd love to tell you in detail about the faceless bureaucrat at school headquarters who explained to me that he/she could figure out what's appropriate for my kid without ever talking to anyone on our IEP team (much less me), based unilaterally on what the system has done in the past and the funding they now have and an unstated feeling that IEP kids can't be included with "normal" kids over the summer. As cleansing as that story would be for me, I understand that names and details are things I don't put up on this blog. Let me just say that I couldn't tell the story without nasty words and anger to the point of tears on my part.

These were problems we didn't face when we were in a much more restrictive (and costly to the system by the way) full year program. If we didn't have the resources to manage our creative summer plans I'm not sure that it wouldn't be a better idea to switch back to that setting. Regardless, we have the resources and we'll manage, but that doesn't make it any less messed up as far as I'm concerned.

Sunday, June 7, 2009

Calendar review = panic attack

Agenda output from Google Calendar:

Wed:
Meet #2 at school #2 @ 4:50 (leave work early)
Awards ceremony @ 5:00
Take #2 home for dinner with #1 & #3
Meet hubbie at school #3 for volunteer award dinner @ 6:30

Thurs:
Hubbie picks up child #2 and take to school #1
Hubbie @ school #1 for SFC meeting @3:30
Rush home to clean @ 5:00 (leave work on time)
Meet #3 and autism workers and hubbie @ 5:30 for monthly meeting
Go shopping for 3x birthday presents
Take #2 to Urgent care clinic for “surprise” earache
Pack #3’s bag for camping trip

Fri:
Training session for 3 new hires @ work 10:00 – 2:00
Hubbie on field trip then camping trip with #3
Rush home to take #1 to movie theatre B-day party @ 4:00 (leave work early)
Go to grocery store for supplies for bake sale items
Dinner with still sick #2
Bake brownies etc for bake sale
Pick up #1 at B-day party @ 9:00

Sat:
Take #1 to SAT II @ 7:30
Take #1 home to pick up bake sale goods & go to carwash bake sale @ 10:00
Go home to pick up now recovering #2 to take to D&D @ 1:00 - 3:30
#1 & #2 go to sleepover B-day party @ 3:30
Meet #3 and get bathing suits on @ 5:30
Go to Swimming B-day party with #3 @ 6:00 - 8:30

Please tell me school is almost over...

Sunday, May 31, 2009

A small change in course


As per my last post, you can see I'm missing the information and conversation on the City School front. Typically I only post here about thing that I have a strong opinion about, but I'm going to try to just bring up a topic and see if that might spark some discussion.

Last week, at a meeting I couldn't attend, Dr. Alonso spoke about City Schools. I'm sure he spoke on many topics, but the one that was reported on in The Messenger (on-line here) was the issue of "different constituencies" in schools that have magnet programs as well as in zone students. I'll try to restate the discussion reported on in The Messenger:

Roland Park Elementary Middle School (RPEMS) has moved from having very little in-zone attendance to having above 90% in-zone in the elementary school. The middle school is the only large-scale magnet program for middle school students in the city and as such is larger than the elementary school and is predominated by out-of-zone students. Judging by test scores both the elementary and middle schools are very successful and there is pressure to expand both programs, resulting in class sizes getting larger. At the meeting Claudia Diamond (a former PTA president at RPEMS) asked if Dr. Alonso would consider splitting apart RPEMS (the article didn't detail how this split would be made, elementary/middle or in-zone/magnet come to mind). Dr. Alonso's reported response was not too enthusiastic (and a little obscure) "I'm not a blueprint guy." But the general idea was that there were other more pressing problems on his agenda.

There's another online article from New York magazine here discussing how once racially and economically diverse schools that become successful, start having too many local students that want to attend and end up losing their diversity ("density trumps diversity"). Judging from some of the comments, the idea of transporting kids to achieve diversity is not any better received now then it was 40 years ago when Pimlico students were bused into Roland Park.

Having been a parent in magnet programs (and not attending our zoned school) for the last six years I can say I have often felt the schism that Claudia Diamond was alluding to. And honestly there is often an under-current of racial and/or economic segregation involved.

So - there's the topic for discussion. I think it's a continuation of the Brown vs Board of Education discussion from Inside Ed that had a lot of interesting comments.

Saturday, May 30, 2009

RIP Inside Ed


A letter sent to The Baltimore Sun:

I am writing to express my anger and sadness at the demise of the Baltimoresun.com Inside Ed blog. It is clear that the personnel shifts have de-emphasized coverage of Baltimore City Schools and cut back on the feeding and caring required by this blog.

As your print edition has become smaller, the web edition of the Sun needs to become more engaging and vibrant, but Inside Ed is becoming smaller and less interesting every day. I would like to say that I am a subscriber to wield some amount of clout, but honestly after subscribing for more than 20 years you lost my subscription several years ago with one of the massive and unpleasant redesigns (aka dumbing down). Until I started reading and posting to Inside Ed about a year and a half ago you had totally lost my attention - I had moved to the web and Slate was much more satisfying than what was then called sunspot.net. Then because of reading the Inside Ed blog I started reading Sun stories again, starting with the Ed beat and moving on to other local coverage. I was checking the website several times a day, reading and putting a lot of time and effort into contributing to the conversation.

The future path of Inside Ed is fairly obvious (and depressing) at this point - fewer City School posts, slow approval and posting of comments, attention shifting away, summer break with even less posting followed by death by lack of interest. This is a shame because I think Inside Ed as a forum really did help City Schools which used to be a cause that the Sun cared a great deal about. There will also be a lot less educated and thoughtful people looking at your site when Inside Ed stops being relevant.

I am fairly sure that this comment will not change Inside Ed's path, but since I'm not commenting on the blog anymore I've got some spare time right now.
__________________________________________________________________

I received the following response from the Sun (maybe because I sent my letter directly to monty.cook@baltsun.com as well as to feedback@baltimoresun.com, so perhaps others should contact him directly)


Thank you for your note and your concern.

We have not, in fact, de-emphasized our coverage of Baltimore City Schools and remain committed to the same high-quality coverage we have provided in the past. With Sara Neufeld's departure we are working quickly to identify the best person who will bring expert reporting skills to that beat.

Additionally, our Inside Ed blog will continue. We expect that it should remain a vital and vibrant home for our coverage of city schools.

We appreciate your patience. We believe your patience will be rewarded with the same type of news and information you came to expect from The Baltimore Sun with relation to its coverage of city schools.

Please don't hesitate to contact me with suggestions or complaints.

Best, Monty

MONTY COOK Senior VP/EditorThe Baltimore Sun 501 N. Calvert St.Baltimore, Md., 21202 (410)-332-6469

Sunday, May 17, 2009

What have I done to deserve this?

Image from - www.nataliedee.com

Puberty - God's way of telling you that he hates parents.

OK - so having gone through this once with the oldest one I had thought (I admit to being in a delusional state) that child number two had made it through the middle school puberty thing fairly painlessly. I was wrong. Oh, how wrong. It's hit and it's much worse this time around. I know there are teachers who are thinking "What a lousy parent! Why are all these homeworks missing? Why is this notebook such a disaster? Why does this child, who had been on the honor role, now not listen to a word I say? Clearly its the fault of BAD PARENTING!"

You know what? I am not in control of this child at this point - tears and lies have replaced all communication. I am told nothing about what's happening, even on total disaster days. You want to blame it all on me? Fine, but I'm blaming it on hormones sucking all the grey matter out of my kid's cranium.

And the totally sad thing? This is just child 2 - one more to go. There's a clear logarithmic trend in the pain of my living through their puberty. You know what that means? I pretty sure that kid #3's puberty will lead to my institutionalization.
At least I won't have to do laundry if I'm in a padded cell.

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.

Friday, May 15, 2009

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.

Wednesday, May 6, 2009

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.

Wednesday, April 29, 2009

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.

Thursday, April 23, 2009

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.

Sunday, April 19, 2009

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.

Thursday, April 2, 2009

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.

Wednesday, April 1, 2009

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!

Wednesday, March 25, 2009

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.

Wednesday, March 18, 2009

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.