The pressure even prompted one frightened third-grade teacher to tell investigators that “there are ways that APS (Atlanta Public Schools) can get back at you” if teachers don’t go along with cheating.

“APS is run like the Mob,” the teacher said, according to the investigation report.

The scandal hits all my buttons – a culture of corruption in the school system, the use of standardized testing tied to individual financial reward, and the dire consequences for all students who have, through no fault of their own, been damaged by the actions of APS. It also makes it difficult to hope or believe this system can equitably or effectively educate my children with autism.

The worst part of the story in the APS cheating scandal, for me, is not the fact that it happened. I believe the system in some ways incentivized people to do the wrong thing and that goes all the way to the very top with former Superintendent Beverly Hall. Rather, the thing that upset me the most was the audacity with which teachers and administrators conducted themselves. They held answer-changing “parties” for God’s sake. To me that speaks of institutionalized corruption and a profound lack of judgment.

But do I understand why they did it? Yes. Because under No Child Left Behind (NCLB), these schools must show consistent improvement in test scores year over year or they risk losing funding. How they’re supposed to do that without necessary additional resources is a question I’ll leave to state and federal lawmakers, but that is the expectation. In theory, NCLB purports to level the playing field for all students, whether special needs, gifted, at-risk or typical. It’s an admirable goal and one I support. But the implementation of NCLB has created strong incentives to get the test scores by any means possible. Because if you don’t, you’ll lose your job or your school could face loss of funding and eventual closure.

I know there are many people who would say that schools who can’t achieve these targets should be closed. That their teachers should be fired. Unfortunately, it’s much more complicated than that. Certainly there are some ‘bad teachers’ at APS. But there are also good ones. I believe part of the problem at APS is that good teachers are often thwarted by bad administrators and an unresponsive district. That’s no easy thing to change, new superintendent notwithstanding. It goes back to the culture of corruption that, when allowed to continue and grow, becomes as inherent a part of the organization as students or teachers themselves.

With their systematic cheating, these teachers and administrators hurt every single student at APS. There’s an old joke about privileged kids who ‘were born on third base and think they hit a triple.’ Many of these kids don’t even get to the plate. And for those who do, against all odds, achieve, this scandal unfairly taints their hard-earned accomplishments.

Several of my friends on Facebook posted about their children passing the CRCT. They were rightly proud and relieved. It made me wonder, though, why does it seem so easy for kids in suburban schools to pass this test but not the inner-city schools? Some of the schools involved with the scandal previously had less than 30% passing rates in reading and math. How? Why? And why on earth would the superintendent, administrators and teachers who cheated try to undermine their own students who didn’t get the help they needed because the test scores were artificially inflated?

As for how any of this relates to autism, I’ll leave you with this. Having seen how the school district operated, with arrogance and perceived impunity, you can imagine what it’s like to challenge them on what a ‘fair and appropriate education’ for a kid with autism means. And we were at one of the ‘good schools’ in APS. One that was not involved in the cheating scandal but will, by many, be painted with that same broad brush.

As for the CRCT? My son Robert will not be able to take the CRCT. Therefore, he will not be able to receive a diploma. Students in special education who don’t participate in standardized testing, upon graduating from high school, receive what amounts to a certificate of attendance. It’s not even equivalent to a GED. In fact, students who receive this special education certificate cannot even get a GED (high school equivalency). Guess that answers my question about why so few students with autism go on to higher education, even if they have skills and capabilities to do so. But that’s another question for another day.

The answer is that there are no easy answers.

The over-arching theme this year is the emphasis on continuing support for adults with autism. Parade Magazine’s Sunday feature titled “Who will take care of Dana? Autism’s Lost Generation” was emotional and hard for me to read. So I filed most of it in the back of my mind to process later. But it’s an important point and one our family, along with thousands of others, will face someday. As difficult as it is to navigate educational options (or lack thereof) for our kids with autism, it is exponentially more difficult to find options for them as adults once they’ve left the relative safety and structure of the federally mandated educational system. From the article:

In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. “We’re at the moment of truth to address the numbers of children aging into adulthood,” says autism activist Linda Walder Fiddle. “Their lives are hanging over a cliff, and we must not let them fall.”

Because of people like Dana’s parents, I hope there will be more and better programs for kids like mine when the time comes. And hopefully our advocacy for Rob and John will help families coming down the line, too.

In February I wrote about autism and other developmental disabilities becoming the new civil rights battle of our time, and I was delighted to see the Chairman and CEO of the Special Olympics, Tim Shriver, refer to it as such on a recent episode of ‘Real Time with Bill Maher’.

I often enjoy Maher but he’s way off the mark here, particularly when he says schools spend more money on their special needs kids, insinuating our kids are getting a quality education because of it. Nothing could be further from the truth and he’s perpetuating a dangerous fiction. While it is true that districts are allocated more funding for students with special needs from federal and state sources (depending on the students’ IEPs), it’s foolish to assume all that money goes directly to providing an appropriate education for our kids. I suspect districts and administrations gobble up much of the funding because, in my experience, it damn sure doesn’t go to technology, innovation, support in the classroom, or equitable wages for paraprofessionals and teachers.

I confess I had an antiquated view of the Special Olympics. Robert will be participating in some of their events this year, but it seems the work being done by Special Olympics is a lot more than allowing our children some physical recreation in a safe and non-judgmental environment. Shriver describes the Special Olympics as a new civil rights movement. YES! He also makes the most eloquent case I’ve ever heard about why we can all really do without “the r-word”.

One more thing I’ll touch on briefly here. We recently visited a private school for Rob for next year. It’s tiny and almost literally has a 1-1 ratio of students to adults. It’s run by folks we’d previously been somewhat connected with when the boys were younger. Rob’s doctor recommended the school and, while there were some drawbacks – the most obvious being a complete lack of exposure to typical peers – we were hopeful that we’d find a way for Rob to attend. It turns out, he “isn’t a good fit” for them. I’ll give you my definition of what that means. It means “we don’t see the potential in your child.” “We don’t think we can help your child.” “We don’t believe in your child.” “We don’t want your child.” “Even though we have one adult per one child in this program that is purportedly designed for children with autism, we can’t help YOUR child.”

What kind of place is this when even the private schools, first John and now Robert’s, can’t help? Not even for the annual cost of a mortgage for God’s sake? What then? I’ve often spoken about my dream of starting a school and I will make that dream a reality. Only now I’ll do so out of necessity because I don’t know where my kids will go to school next year. The local high school doesn’t have an “autism” program, so we’d have to go to a different high school. (Nothing says community like sending the kids with autism to a completely different school, but whatever.) I want to bring the same acceptance, support and peer modeling that I’ve seen since Robert started back to school to a new environment of technological innovation, community integration and genuine hope for the future.

Rob’s aide describes him as ‘the most popular kid in 7^th grade.’ I’ve seen it with my own eyes, kids I don’t even know saying ‘Hey, Robert’ and giving him high-fives in the hall. They ask about him if he’s not there and beg to work with him when he is. He’s a cool kid. Who knew? John only wants the same thing. He wants friends. The kids are ready, even if the administrations are not. How to best tap into that?

I would love to hear from other parents in the metro Atlanta area who believe we can do better for our kids. Please email me here.

Peace.

As many of you are aware, we ended up going to mediation with Atlanta Public Schools for Robert’s education. All I can say is that it was a painful and difficult two-month process, but the end result is that Robert went back to his former public middle school today for the first time since the end of November. New systems and staff have been put in place and, overall, I’m pleased about the outcome and hopeful we’ll make it through the rest of the year. Rob is very stressed but they say he did pretty well today all things considered.

One truly gratifying outcome has been the reaction of Robert’s typical peers with whom he’ll share some classes. When our family lived in Vancouver, I worked with a group called Friend 2 Friend Society which was founded by another ‘autism mom’, Heather McCracken. From their website:

Friend 2 Friend Social Learning Society has developed and currently provides programs designed to demystify autism spectrum and related social-communication disorders and to promote understanding, acceptance, empathy and mutual rewarding friendship for all children ages 3 to 18.

I spoke to Heather a couple of weeks ago about the possibility of bringing Friend 2 Friend to Atlanta and it’s something I am very anxious to pursue. I presented a slightly modified simulation game program to both John and Robert’s classes at school – 1 at John’s private school and 3 at Robert’s public school. Over 60 students and teachers took part in the program.

In Heather’s program, participants play a simulation game that includes a simple spelling test taken while they are being bombarded with sensory input – noises, a voice-changer, feather duster, wind cannon, etc. Then we explain how sensory challenges make it hard for people with autism in school and how their communication difficulties make it hard to make friends. The program continues with ‘different kinds of minds’, in which we point out that we all have things we’re good at and things we’re not so good at and concludes with friendship tips, the most important of which is ‘accepting differences‘.

So while presenting the program to these 4 groups of middle-schoolers, I was struck by how attentive, engaged and receptive they were to the message. They asked good questions, many thanked me and shook my hand, and they were especially impressed with this slide of one of Robert’s drawings. I introduced this during a segment of the program called ‘I want friends’.

Robert - Grade 3 - I want friends

When one door opens, another closes . . .

I was really encouraged by the reaction of all the students and held out hope that the presentations would help my kids’ peers understand autism and be better friends to children with all types of differences. Then, on Wednesday, my husband and I attended a meeting at John’s private school. John has struggled in this environment. I had previously met with both his teacher and the principal of the middle school. I should have listened to my internal radar when the teacher told me, not long after John started school there, that he was “lower-functioning autistic” than anyone previously at the school.  This particular school (which I won’t name because my oldest son still goes there and has been successful) prides itself on working with kids with learning disabilities and language disorders. They told me at the beginning that they really “weren’t set up” for autism. That was my first clue, come to think of it. But John’s doctor had recommended the school based on John’s current level of capability and testing and I had heard wonderful things about it, so we gave it a try.

John really hasn’t been happy at the school since the beginning but we were trying to make it work for a number of reasons. And I continually asked myself if it was the autism or the puberty or the general suckiness of being 13 and in middle school that was making it so hard for him. My conclusion was that in addition to all those things, he didn’t have a good relationship with his teacher. She didn’t get him. I think she didn’t like him. She focused on his negatives and never on his positives. And he has a lot of positives – of all my kids, he is known to family and friends as the most friendly and outgoing. He is very sensitive and, because of his twin, also pretty tolerant. He wants friends.

So, less than a week after enduring mediation for Robert, and only two days after I’d gone into John’s classroom at my own expense and done a presentation, we were told John “won’t be invited back” to his private school next year. We weren’t just told. We were ambushed by a room full of people – two teachers, the school psychologist, the middle school principal and the speech pathologist. Joe and I were completely shell-shocked. We’ve been through a lot over the years, but this really hit us hard. After all, we likely would have come to the same conclusion at the end of the year. But to be put on the spot in a meeting in front of all those people and told, out of the blue, that they had observed him and done due diligence and researched other schools for us (I was NOT impressed by that piece of presumption on their part), was painful. And certainly not the kind of pain you’d expect from a school that costs . . . wait for it . . . over $24,000 per year. Per kid.

That’s why I called this post the ‘new discrimination’. Autism and developmental disabilities are the most pressing civil rights issues of our time. From institutionalization to segregation from the general community, our children and adults with autism face all sorts of discrimination. Their therapeutic care is not regularly and reliably covered by any health insurance. Their public education is often under-funded and wholly inadequate. They frequently suffer the soft bigotry of low expectations, both in school and in society. Adults with autism are treated the worst, with only 15% pursuing a college education and a 90% unemployment rate. {See this outstanding info-graphic from Samsung and The Dan Marino Foundation.} John’s private school is just a microcosm of a society that judges based on a label affixed to him instead of on his merits – as a solid ‘B’ and ‘C’ student, no less. What should we do now? That’s a question for tomorrow.

Our family never felt this ‘disabled’ in Canada. Just sayin’.

Peace.

Update: One of Robert’s teachers told me today that one of the groups I spoke with about autism has responded particularly positively. He went to sit with his former class at lunch and the new class, comprised of typical peers, waved at him, called his name and urged him to come sit with them. Never again will I underestimate the goodness and acceptance in these kids!

Ms. Stallings,

I have had an opportunity to review the minutes of the November 23, 2010
meeting and speak with staff and it is my understanding at the end of
the meeting, the team proposed homebound instruction be pursued.
Furthermore, when the option of changing location of services was
discussed, you were not interested in exploring that option. Thus, I am
unclear as to why you are contacting {principal’s name}, the {name of school} principal. The Atlanta Public School District is prepared to move
forward on homebound instruction contingent upon receipt of your
physician’s medical information as discussed at the meeting. Another
option is allowing Robert to return to {former school} where we are ready,
willing, and able to provide FAPE.

If the above is not consistent with your understanding, please feel free
to contact me.

Huh? The district doesn’t know why I contacted the principal of the other school? Maybe they didn’t read my email (in part):

November 29, 2010

{District representative} did make the offer of placement at {other middle school} in
the MOID program for the rest of the year. My initial reaction is that
this is a disaster waiting to happen. We are skeptical that the issues
we have with {current school} and APS will be any better at a different
location. Further, uprooting Robert from children he knows and a
teacher he knows could prove very difficult for him both emotionally
and behaviorally. {Other school} is farther away from home for us so I assume
the district would provide *safe* transportation for Robert. I am not
familiar with their program.

Having said that, we are willing to consider the program and would
like to meet the MOID teacher, the principal and a regular education
teacher at {other school} to determine if it would be a placement that would
work for Robert for the rest of the year. We discussed in the interim
that Robert will receive home-based instruction once his doctor has
signed a letter indicating that the anxiety he experiences in his
current classroom precludes him from being able to attend there. Three
hours per week is completely inadequate, however, and there was a
sense in the meeting that this is simply a stop-gap to prevent truancy
considerations. Never mind that our child is demonstrably *afraid* to
attend school.

Then I sent two emails to the principal of the other school, copying the district representative on both:

. . .

In an effort to thoroughly investigate our options, my husband and I
would like to meet with you at your convenience and would also like to
meet {other school’s} MOID teacher, aide(s) and a representative regular
education teacher. Robert’s teacher at {current school} has shown genuine concern
for him. It will likely be very difficult to uproot him from a teacher
and classmates he knows, but we must due to a variety of factors.

Please let me know an appropriate time that we could meet with you and
discuss Robert’s placement and please also let me (and those copied
here) know if this is something that must come from the district
instead of myself. As a mom who is getting ‘unexcused absences’ for
every day I don’t send Robert to what I know to be an unhealthy
environment for him, I am attempting to expedite things as much as
possible.

This is where it gets weird. The very same district representative who was copied on both my attempts to contact the principal of the offered alternative school sent me this on December 6, 2010 (bold emphasis is mine):

Ms. Stallings,

The email you sent on Monday, November 29, 2010 was addressed to {principal of the other school}, PrincipaL, {other school}.  I was copied on the email and not aware that I needed to respond to you regarding your request to visit {other school}. It is my understanding the principal of the school would facilitate the visit. If there is anything I can do at this point, please let me know.

Go back and read the first email in this blog. The one about ‘it’s unclear’ why I’m contacting the other principal. I have two words – cognitive dissonance.

So the reason I’m posting all this nauseating detail that is boring even to me is that it boils down to this: The school district thinks we’re stupid. They’re either betting we won’t spend the money to hire an attorney or that they can string us along, all the while providing 3 hours a week . . . A WEEK!!! . . . of education to our son indefinitely. This with the thousands of dollars they receive in state and federal funds to educate him. All that money doesn’t go into additional resources or curriculum or related services or innovation. Where does all that money go, APS?

We as parents often get mired in the day-to-day of life and before we know it, things get out of control. I was reminded of this tendency when I found another case involving APS and a student with dyslexia in 2007. Here’s the link to the text of the case: Jarron Draper (plaintiff) v. Atlanta Independent School System. From a story in the Macon Telegraph in 2007 (link to full text of article):

(Judge) Shoob ruled that The Cottage School, a suburban Atlanta campus devoted to serving special-needs students, can “provide him with the services he needs to go forward to become an independent, capable and successful adult.”

David Monde is an Atlanta attorney who represented Draper. He said his client, who was reading at a fourth-grade level when he was 17, has been working at a grocery store but wants to return to school.

Monde said the Atlanta school system’s reluctance to take him out of a restrictive class for mentally disabled students, even after the independent evaluation was completed, hurt his chances of catching up with his classmates.

“They just dragged their feet and put every obstacle they could in front of this kid and he just persevered,” David Monde, an Atlanta attorney who represented Draper in the case.

“That’s what makes this a great story.”

“Atlanta Independent Schools” sentenced Jarron Draper to life as a grocery store clerk and they sentenced him to life in special education, refusing to provide adequate supports that would have helped make him a more independent and productive adult. I was particularly struck by this quote:

“They just dragged their feet and put every obstacle they could in front of this kid and he just persevered,” David Monde, an Atlanta attorney who represented Draper in the case.

Yup, sounds about right.

Peace.

If you have children and they’ve never had a class with a child who has a disability, ask yourself why?  Federal law explicitly states that children with disabilities have the right to be educated alongside their typical peers to the maximum extent possible. Robert’s school has provided him with zero hours among typically developing peers this year. Which means kids like Robert, contrary to civil rights rulings in the 1960s (Brown v. Board of Education, 1954 was the beginning), are segregated from the general population in school. What does that mean? It means typically-developing peers don’t know how to interact with our kids. They learn to mock those with disabilities. Or fear them. Or worse – ignore them.

How can we as parents hope for a semi-independent or productive life for our son when our society is being groomed to disdain him? Who will care for him when we’re gone? One of the most touching and memorable things about Robert’s experience in full inclusion in Vancouver was the reaction of others in his class. I received several notes when we left from parents and kids who said they would miss Robert. This is part of a message from one of Robert’s teachers in 5th grade:

All of us miss Robert so much. The classroom just isn’t the same without him. And I certainly miss our daily celebrations over his progress. We think of him all the time and I often hear the kids talking about how much they miss him.

On a procedural note, we’ve decided to file a formal complaint with the Georgia Department of Education against Robert’s school and the district. We made this decision after a week went by with no response to the letter I sent the district or to a note I sent to the principal of the alternative placement school. We have no idea what will result from this process, but at the least a bright spotlight will be shone on the situation and I believe it will be extremely illuminating.

To illustrate how situations like these impact not only the student with a disability but the entire family, I share a piece written by my 15 year-old-son, Joe. He wrote it at school in response to a question in writing lab about whether he would break the law or risk his personal safety to rectify a situation he felt was wrong. I’ll let his words speak for themselves:

My brother Robert is affected significantly by autism, and he’s run into several academic issues growing up, but there has been a recent incident that has made me furious with his school, {name of school}. He’s spent about a year at {school} and he didn’t have that much trouble up until now. He would put up a fight going to school, and we suspected either aggression or abuse in the classroom. It turns out something is indeed going on, and we took him out of the school. The environment for the special needs children is already under-developed to the point that it’s just a daycare for kids disguised as a classroom without any support or challenge, and with the curriculum equivalent to that of a kindergarten’s class, where education isn’t a large part of it. That’s bad enough, but with cases of possible abuse is inexcusable.

I feel that my brother should get an actual education because he deserves it, not being segregated from the rest of the school. In order to achieve a goal like that, I would break the law, but not necessarily risk my safety, because doing that wouldn’t be quite worth it because it probably wouldn’t happen.

That he even has to think about this is tragic. And while I’m sure he absorbs much from his father and I, these are his feelings and his words.

No matter what the school district does or does not do, they can’t take away the hours of worry, stress or regret that have touched all our lives, along with extended family and close friends. I honestly don’t think they care.

Peace.

Because of the higher density of the quicksand, it would be impossible for a human or animal to completely sink in the quicksand, though natural hazards present around the quicksand would lead people to believe that quicksand is dangerous. In actuality the quicksand is harmless on its own, but because it greatly impedes human locomotion, the quicksand would allow harsher elements like solar radiation, dehydration, or tides to harm a trapped person.

That’s the best analogy I can use to describe what it’s like advocating for education for kids with autism and other disabilities. The system might not sink the child to the bottom, but they will trap that kid and sentence him to a life of limited independence and limited means because they mistakenly believe our kids are capable of being grocery baggers or janitors and nothing else.

Don’t get me wrong – I would be very happy if Rob wanted to work as a bagger in a grocery store and received fulfillment and independence in doing so. But what if he would be more fulfilled in adulthood as an artist? Or a programmer? Or an engineer? Or a chef? Why would I smother his potential at the age of 13? Why would the school system?

Robert recently became afraid of someone who works in his classroom. It started with him saying “No fill-in-the-blank” (the person’s name). Then evolved into full-out tantrums and screaming in the hall, pleading not to go into the classroom. There are many theories about where it came from and needless to say, I was mortified. He can’t tell me what’s wrong. Can’t tell me what this person did to him or what Robert may have seen this person do to another child. If anything.

What if Robert could tell me? What might he say? ‘Mom, (this person) yells a lot.’ or  ’Mom, I saw (this person) getting rough with another student.’   or ‘Mom, I’m afraid of (this person) because he/she hit me.’  or what if he said ‘Mom, I don’t like (this person) because he/she makes me do work I don’t want to do.’

There is a prescription for every one of those things. Some involve reporting the person. Others involve talking with the teacher. Still others would require talking to Robert about doing his work. But I can’t do any of that because he can’t tell me. I don’t know what happened in that classroom to make him so afraid. But he is afraid. What is a Mom to do? What would you do?

I went to a meeting on the Tuesday before Thanksgiving with 8-9 district and school employees (I lost count, how sad is that?). It was an urgent IEP meeting called at my request. At the end of last school year, I signed a crap IEP for Robert because I wanted him to just make it through this year so he would be eligible for his special needs scholarship funding under SB10. (Their website is here.) The bottom line is that this district doesn’t have the resources, knowledge, training or support to educate Rob. There are problems so ingrained in this failed system that it will take years to correct them, assuming there is actual willingness to do so.

My husband and I requested that the principal of Robert’s school attend the IEP meeting.  She arrived an hour and 10 minutes after the meeting started. Afterwards, we wondered what could have been so important that she missed a highly contentious meeting about a very sensitive matter. He posited that she holds the nuclear codes and was busy protecting the US from China.

Our story is long and, as Winnie the Pooh would say, ‘it’s even longer when I tell it’ so I offer a few pieces of the follow-up letter I sent to the district after the meeting.

IDEA mandates that schools educate students with disabilities in regular classrooms with their nondisabled peers, to the maximum extent possible. Robert’s IEP called for (a paltry) 3.5 hours per week in general education, and even *that* has not happened. He is clearly NOT being educated in the least restrictive environment and in fact, is currently receiving zero hours per week in a ”mainstream” environment.

Robert has not been receiving adequate or appropriate related services as mandated under IDEA. We were shocked to learn that he was in a speech group of not three children but FIVE, all with conditions at least as debilitating if not more so than his own. For one hour per week. I have received no documentation whatsoever to report his progress toward goals since he started at (the school) in February of this year (covering portions of both 7th and 8th grade). Further, Robert is entitled to occupational therapy (I have literally 10 years’ worth of medical and therapy records to prove it) and I have been asking for it since he started school in February. I’ve completed two identical sets of paperwork with the school with *no* follow-up from the district occupational therapist. Several members of the team didn’t even know the name of the OT. Does she exist?

And finally . . .

Robert’s previous IEP was completely inadequate and we made it known at the meeting that we don’t even know how to “get there from here” when comparing it to his previous IEP (thorough, accountable, relevant) from 3 years ago in Vancouver. Goals were included in the APS IEP that he had mastered when he was nine years old, such as counting change. Goals were included in the IEP that he has not worked on – specifically, goals about sorting laundry and pantry items, ridiculous as they are, HAVEN’T BEEN TAUGHT! We confirmed this in the meeting. For a good part of the meeting today, we revised the goals included in the previous IEP to align it more properly with present levels (even though I have no documentation of his present levels other that the psycho-educational evaluation done recently). It is also clear that Robert does not have access to the general education curriculum as the team and teacher struggled to “come up with” science and social studies goals for him during the meeting.

The stuff in bold is federal law. And the school and district are violating federal law when they deny Robert (and likely hundreds of other kids across the state) the right to a free and appropriate public education. They made the cold calculation to staff special needs classrooms with the minimum number of people paid at the minimum amount possible. Why are they surprised when things fall apart?

I can take heart in one thing. Robert was sitting next to me (mostly patiently  ) during the entire meeting. At one point he blurted out, ‘This is ridiculous!’. I don’t know what he was thinking about at that moment or if it was a response to what was said during the meeting, but I responded to him, ‘Yes, honey, it is!’

We’re being offered placement in another program at another school. Makes you wonder what happens to the school that violated federal law. The school that didn’t do its job? The school that sentences all those kids to a life of special education? But it has ’10 out of 10′ on standardized tests. Pffft.

Peace.

My family could not feel more excluded from the school experience this year for Robert. Today I saw a van from a local music instrument company leaving the parking lot. We never get notices about band. Or athletic events. Or other school ‘happenings’. The MOID kids (that’s ‘mentally or intellectually disabled’ if you’re wondering – oh, and autism is neither of those, but there is no more autism program in this school that supposedly had one of the best) may as well be in a different school for all their participation in the daily community.

Which brings me to the title of this post – “No cake today = no motivation”. That’s what Robert’s daily report said under ‘Comments’. Every day, Robert gets 5 grades based on following directions, raising his hand, turning in his homework, etc. Usually it’s a mixed bag with mostly C’s because I’m sure they figure ‘F’s’ would raise red flags. Let me say here that the teacher and assistant are sweet people. They are consistent and well-meaning. But I’m not sure they know how to teach a kid with autism. So yesterday, Robert brought home 5 A’s – WOW! I was elated for him. The comment said ‘Cake is a big motivator for Robert!’ Apparently the class was celebrating birthdays and the promise of cake motivated Rob to do his work and “be good” all day. Not so today. So why not use cake every day?

Well, for starters, it’s food. And rewarding kids with food can cause them to have a very unhealthy relationship with food. I’ve heard of classrooms where the special education teachers would withhold lunch (or threaten to withhold lunch) from kids that didn’t “do their work”. Yes, it’s illegal. Yes, it’s wrong. But when you’re trying to work with someone you don’t understand and don’t know how to motivate, you might get desperate and try anything. Robert’s first grade teacher often put Rob into timeout – for no other indiscretion than lacking focus (a trait of his disability, but never mind) and the other kids would have doughnuts and juice while he was there. I wonder what was going through his mind as he watched his classmates eat their snack while he sat. It makes me furious. And that was in a special education class.

I KNOW my child can learn and be motivated without food as a reward. I’ve seen it in public school practice for three years in Vancouver and I’m able to do it at home, which is an incredible challenge but works. So, short of sending cake to school every day, how is he supposed to learn? Or be motivated? I don’t completely fault the teacher, she is so kind, but she does not have the tools, the support or the training to work with him. Where does one even begin with this?

And a note about ‘MOID’ classes and my observation of them. First, most of these kids are kind and compliant. They are good to each other and they are good to Robert. I treasure them because they’ve all been given short shrift. They repeat work until it’s mind-numbingly boring and they are isolated almost completely from their peers who honestly don’t know what to think if they encounter them in the hallways. So sad. There has got to be a better way and that is what I am working toward. Atlanta, for all the international attention and technological advances, is still in the 1960s when it comes to educating outside the box.

That illusion was shattered with their IEP meetings over the past two weeks.

John was diagnosed in 2002 with “high-functioning autism”. The general education teachers in John’s middle school classes acted like they didn’t know him. Two of them could think of nothing positive to say about him. Their lack of understanding and seeming lack of interest in him was a slap in the face.

Robert’s IEP was just plain sad. He won’t go to school without crying every morning. He’s exhibiting behaviors I haven’t seen in years, regressed to the point that I’ve been going to school and trying to “hang out with him” a little while he pleads to go home or for me to stay with him.

He does a page like this every night, depending on what day it is:

Now they want me to put Robert in an “autism program” in Atlanta public schools. Google the words “autism Atlanta public school”. The first thing you come up with is a court case in which an 11-year-old boy with autism was abused; the parents filed suit and won. Then, Atlanta Public Schools appealed. You can read the story here.

If they think I’m sending my child to any Atlanta Public School autism program, they have lost their minds!

But hey, their CRCT scores are tops in the district.

This was in Vancouver and this is what inclusion looks like:

It doesn’t exist here. Now what?

West Virginia Advocates, Inc (WVA) is a private non-profit agency dedicated to protecting and advocating for the legal rights of West Virginians with disabilities. We are designated as West Virginia’s Protection and Advocacy System (P&A). Every State is mandated by the Federal government to have a P&A.

Through advocacy, education, and outreach WVA works to ensure that West Virginians with disabilities have access to the same opportunities afforded all members of society, so that they can live full, productive lives, totally integrated into their communities with as much self-direction and independence as possible. WVA assists persons with disabilities to increase their knowledge of their rights and strengthen their ability to advocate on their own behalf.

I’ll be telling them about my sister-in-law, Jenny. She is in her mid-thirties and is quite severely affected by her autism. She spent most of the day today in the emergency room because her “roommate” punched her in the face. Jenny is in assisted living, with “care-givers” provided by a for-profit corporation. One of these “care-givers” has already been sent to prison because she abused Jenny by tying up her hands and locking her in the closet when the “care-giver’s” boyfriend visited.

As I told my mother-in-law, she and I could just as easily be having this conversation in 10 or 20 years about my son, Robert. This is not right and it has to change. If you have a young child with autism and don’t get involved in equal rights and protections for people with autism, where might your child or children be in 10 or 20 years? Or if something ever happened to you? And if you don’t have a child with autism, ask yourself if this is how our country should treat the most vulnerable among us.

As much as we families may try, our lives will inevitably revolve around the child or children with special needs. Not intentionally and often despite our best efforts. But it is a reality. We limit our exposure to the “real world” and now that we’ve determined the schools here would be a big step backwards, we’re lucky if we get out once or twice a week, to the public library or a local restaurant. Even these limited excursions are stressful, difficult. The tension is palpable in both myself and my oldest son who does not have autism. The other night, we went out to eat for my birthday. Our booth was diagonal from a group of women who were having a wedding shower (one wore the little bride headband thingy). We always have Robert, my son who is most impacted by his autism, sit inside the booth, lest he decide to bolt from the table and investigate any visible phones (his current obsession) or try to grab something off a waiter’s tray. Now none of this would probably happen. But previous experience makes you cautious. Really, really cautious. So we do little simple things like have Robert sit on the inside of the booth. Well, we spotted a baby carrier directly behind Robert. Apparently, one of the ladies at the shower brought her newborn and placed the carrier in a chair at the table. We all looked at it knowingly and even considered having Rob move to the other side. Because he is intrigued by babies. Especially when they cry. And if they’re not crying? He might poke ‘em. Not to be mean. Just to hear the sound of their cry. Now when we lived in Vancouver, he participated in a program with his class called ‘Roots of Empathy’ – an excellent program that brings newborn babies (with their moms) into elementary classrooms. The parent talks about the baby and its growth. The kids can ask questions and the teacher takes photos of the baby’s development over subsequent monthly visits. Usually, the baby is walking and sitting up by the end of the year and the class has (hopefully) learned about caring for a baby and the baby’s needs. Robert participated fully with his classmates and he didn’t poke the baby once. In fact, I have a photo of him holding the baby and smiling (with help from the baby’s mom). But I was always a little worried and I know his aide was, too. I’ve seen him get that look in his eye. And I know it means trouble!

Having hopefully given you a glimpse of our typical thought process for something as simple as going to eat at a restaurant, I’m sure you can appreciate the hundreds of daily instances where these kind of thought processes are taking place. We bolt all the doors because there have been occasions when Robert has escaped to a neighbor’s house. This despite our best efforts at securing our premises, mind you. If you have children, and have ever “lost” them, even for a few minutes, at the mall for example, you know that the excruciating minutes before you “find” them are something you NEVER want to repeat. And I’m guessing many of your children, even young ones, could ask for help, articulate their name and your name. One of the first things we’ve taught Robert was his full name and birthdate, our full names and our address. Whether he can recall it in an emergency is still a question. This may sound crass, but don’t they have one of those implant chips for kids? If they can do it for dogs, why not kids? I’m being partially facetious but it is a real damn concern for parents of kids with autism because our kids are curious and a whole lot smarter than most people may think. If they see something and want to investigate it, they WILL find a way!

So the title of this post is about an organization called ‘Autism Speaks’. It was founded by former NBC executive Bob Wright and his wife, Suzanne in 2005 when their grandson was diagnosed with autism. I went through the story above to give voice to those families with autism who *know* the daily struggles we all face and to let those of you who don’t have children with autism know a little bit of what it’s like. I want to emphasize something at this point. I wouldn’t change my life. I wouldn’t change my boys. They are who they are, they bring me so much happiness and they are the best thing about me. But if being a parent is tough, being a parent of autism is nearly-but-not-quite-impossible. So back to Autism Speaks.

There have been a lot of organizations, particularly in the past 5 years or so, that raise money and awareness about autism. But I’ve been thinking lately. I appreciate what these organizations are trying to do, although I don’t always agree with their stances. But when an organization gets this big, I have to ask myself, what are they doing for the children, adults and their families who are living with autism every day? They are money-raising behemoths. Is that why I’m a little sad that the money doesn’t seem to make it to families that can’t afford therapy or can’t afford public school alternatives for their kids or are not able to school their kid(s) at home? This particular organization emphasizes science and research. They support a lot of scientific work that is good and necessary. But what good is it to this generation of people to find out the genes that may be implicated in the future? Before you call me selfish, consider: Autism Speaks and other organizations like them are raising money by promoting the struggles of families who are currently living with autism. They have produced some very touching (pretty realistic and incredibly sad) videos about people and families living with autism. They advocate attempts to “cure” autism. I know some adults with autism who insist they are the root of all evil but I’m not ready to go there yet. Here’s a snippet of a comment about Autism Speaks:

Autism Speaks is a hate group that would never give a single dime to help an autistic person – they want autistic people to cease to exist, and they’ve put out some pretty disgusting propaganda to push that goal. Sure, some of their money supports research into the causes of autism – but even that’s with the goal of “preventing” autistic people, never with helping an autistic person or a parent of an autistic child.

That’s pretty harsh. But I know a few adults with autism who feel the same way. They believe their autism is a part of them and the people they are. I love having this conversation with adults with autism. I tell them I hope my son will some day be able to articulate the way he feels about issues such as these to me. He can’t do it yet, but his language is growing in leaps and bounds and many people with autism acquire an enormous amount of new language as they get older. After all, it’s a developmental *delay*, not a developmental deficiency. When Autism Speaks first started, I sent them a note about autism advocacy. I worked for the same company as Bob Wright when my son was diagnosed with autism in 2001. And I fought the insurance company (as nauseatingly detailed in previous posts) for coverage for basic expenses. And the insurance company got away with it because the corporation was self-funding the insurance plan. So they didn’t have to follow state law to cover any of Robert’s therapeutic expenses. So I encouraged this organization to advocate for insurance coverage for autism. On their website, they applaud states for enacting (8 years later) laws to cover autism. But no one is addressing the loophole of self-funded mega-corporations. The state of Georgia had such a law on the books in 2001. The company for which I worked and Mr. Wright was a highly-paid executive, didn’t have to follow the state law.

Here’s my bottom line and it might not be popular. But organizations that raise money on the very real challenges experienced by families with autism need to start serving those communities they’re using to raise money. You want to give a million bucks to a scientist to perform genetic research that may or may not lead to another study that may or may not lead to a gene that may or may not be differentiated in the autistic brain? Fine. But how about throwing some of that money to authentic boots-on-the-ground projects? Like respite care for God’s sake? Like a decent fricking education for the people who are currently on the planet and living with autism? For educational programs that will train schools and teachers and peers to . . . wait for it . . . ACCEPT people with autism for what and who they are? For job programs that help adults with autism, even the most profoundly affected, participate in larger society? And for the many thousands who will graduate school and wonder what’s next? How about job creation for people with special needs? And quality, reliable coverage for speech therapy and occupational therapy? Sure, I’ll wear your rubber bracelet and put the ribbon magnet on my car. But what will YOU do?

Peace.