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!

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.

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!