Susan Senator

I have friends on both sides of the issue of the autism divide. I read both arguments (cure vs. acceptance) and I am moved by things both say. I am very frustrated with the heat around this issue. It is a great, yawning chasm that promises devastation to any who fall in.

So, here I go!

Why is this such an acrimonious issue? Why does the idea of autism being curable rankle some so much? And why do the curebies see red when the neurodiversities disagree with them?

I think that for the neuro’s it is an insult to imply that autism is something that should be cured. They want to be who they are. That is understandable. But they are so often high-functioning, no wonder!

My question for them is: What if PECs and FC and all the other modes don’t really work for a very severely autistic person? What if that person really does want to “come out?” What if neurodiversity is really only applicable to very high-functioning, i.e., communicative, people?

For the curebies, it is sick not to want to help a struggling child “get better.” They have anecdote after anecdote supporting biomedical interventions. They have found DAN! doctors whom they trust. They have found traditional pediatricians whom they cannot trust because they dropped the ball on their kids. They feel that the CDC, et al., have lied to them about mercury and poisons in the well.

My question for them is: What if you are wrong? What if the treatment you are giving your child is doing nothing or actually hurting? What if, by implication, you are giving your child the message that he is not okay as he is? What about your family life? Is it completely consumed with autism and eradicating it? How do you have any fun?

The big question is: Is it possible for us all to drop our anger at the other side and focus on what we believe is best for our own kids?

This, perhaps, is the beginning of my novel (see posts below), and it starts with Natalie, the mother.

Chapter 1

“It’s from this that you get your strength, Katie Scarlett. The red earth of Tara.” So said Gerald O’Hara to his daughter in Gone With The Wind.” Back when Natalie first read it, at the age of 13, she did not give a damn about earth. She wanted to learn all about Scarlett. She wanted to be Scarlett. She had swept her hair off her face like Scarlett. She had batted her green eyes like Scarlett. She had flirted like Scarlett.

But 28 years later, forget Scarlett, Nat wanted Tara. Or, more accurately, to have soil like that. All that space for planting! Lately she had been craving the dirt, like some sort of earth-worshipping pagan, or a geophasiac. Almost wanted to eat it, like she had when she was a kid. It was late winter, and there was not a spot of green in sight, and the soil was fast asleep, gone gray with numbing cold. She hated it, like so many people did that time of year.

Gardening was never so important as in the late winter. That was when people look out the window and pretty much all they would see is brown, broken up by bits of gray. Maybe if they looked hard enough one morning, in a full-sun spot, they could suddenly notice a bulb shoot poking up, like a green vulva folded, waiting. Those green nubs made Nat cry, the first time she would see one of them. She would then search the ground for more, like a mother missing her children.

So far, though, objectively, that winter had not been a particularly hard one, for Boston. There had been no snow in December, or January, but it had been a very wet, snowy February, the intensity of which had worn everyone down. Simply because of February, everyone went around saying what a hard winter it had been. It was like that there. “Hardy” New Englanders did not actually exist, Nat had found. They are an opinionated, difficult-to-please group, prone to saying, “You don’t like the weather? Just wait five minutes.” And they thought they were the wittiest part of the country for it.

But those who lived in Belleville, Nat’s town, which was an urban suburb in the Masssachusetts, knew they were in the wittiest part of the country, aphorisms aside. Those who discovered Belleville usually fell in love with it and tried to stay, despite ridiculously high rents. The three-story Victorian townhouse apartments and condos attracted couples to the town. Then, after the first kid came along, they usually looked for a bigger place, a two-family maybe, something with a little yard, a postage stamp garden. If they could, they would buy in Belleville, not the more affordable, gorgeous Emerald Plain, which was actually a part of a larger city. Oh, the kids got quiet streets and cute playgrounds but when they got near five years old, they were going to crowded city schools or they’re going to private school. You buy in Belleville, you pay more, but you got one of the nation’s best school systems. That’s where Nat came in. She was a realtor, and had done really well selling property here.

Nat’s little piece of Belleville was in a neighborhood called Belleville Point, an area of densely settled Victorians that were mostly divided into condos, but with one or two single-families remaining. She owned a single-family, having bought early in the game (not knowing at the time that there was a game) eighteen years ago with her then husband Todd. In the dead of winter. “Dead of winter,” a perfect phrase for what it was. Whoever dreamed up that one had no knowledge – or patience for – the “winter garden” mentality. How incredibly pathetic Nat found the idea of “winter interest” to be: black bark against white snow, red berries, statuary covered with snow. All lonely, cold, stark images; not at all what a garden should be about: living, moving, green, warmth.

Nat let the curtain fall on the smudgy glass of the dining room window. She stared at the ruby red silk that puddled at her feet, like a river of blood. Her reflection in the oval mirror to the right made a flicker of movement, and so she turned from the window to the mirror. She’d spent a lot of time the past year, in front of the mirror, not planning to be there but somehow ending up there, looking without actually seeing herself. Then she would focus really hard on her reflection, grimly satisfied with what she saw, then puzzled by her vanity. The thick straight brown hair, hardly any gray. Green eyes; she still thought them her best feature. Skin the slightest bit pouchy underneath, and under her jaw. Weight good. Not too many signs of being forty-one; and yet she was now single. Where was the sense in that?

Just before the divorce, Nat had decided to become more active in the boys’ schooling – at least in Henry and Dan’s — unlike the early childhood years where she had been so busy trying to afford their dreamhouse. Eighteen years ago, when they had first married, buying a gorgeous old house was all they could think about. So she chased that dream, and had her babies kind of without thinking, one after the other. The youngest, Dan, was far more planned for, plotted for. But not Nick and Henry, of course.

The boys were definitely the best of Todd and her. Todd. Who marries a guy named Todd?, she thought. She had, in total rebellion from her parents, which came late, in her twenties. Todd Sherman, tall, blond Protestant from Vermont, whom she had met in grad school at Harvard – they were both getting their MBAs. Nauseatingly clichéd mid-eighties career tracks. And what was Todd going for, when he fell for her? A little excitement in his dull WASPy life, perhaps. And they had had that, to be fair. It was good for a while. When the boys were little, cute, fresh-smelling. But then they became more complicated, especially Nick. And Todd, although a good father, could not bear it. He had felt betrayed by it all. Nat knew it, though she never said as much. Todd was no Magic Daddy. But it was really only towards the end of the marriage that he realized he really wasn’t up to it, that he wanted a quieter, simpler life. A neater life. No other woman (or man, thank goodness). No daily living with a rebellious kid. Just silence. Just work and hobbies. Poor guy. Schmuck.

What would you do if you knew that your unborn baby was carrying a disease? What would I do? This issue, discussed in the November 20 New York Times has sparked a new debate in abortion and prenatal testing. The answer is very different for me now than it would have been sixteen years ago, when I was pregnant with my first. This is still a matter of personal choice in our country, but that does not stop me from wondering where I stand. My feeling is, how would I know and really be able to trust that any condition was so acute that I would not be able to give that child a life? On the other hand, if the child suffered from his disease, what then?

Is it better not to have been born?

How could I make that choice for him?

But how horrible to be someone else who does not feel the way I do, and has no choice in the shape her life must now take?

With such testing, where will people draw the line between eliminating fetuses carrying incurable, fatal diseases and fetuses who are disabled in some way?

This is fiction, FYI.

Nick pulled the seatbelt over his body and felt it click into place. He loved the fastened seatbelt. He loved the car. In the car, everyone looked ahead or out the window. People talked but he didn’t have to. He could just look straight ahead at the lines in the car leather, watch them blur and then sharpen, blur and sharpen, creating gray thicker lines that shimmered and waved. He loved things that shimmered and waved.

He first discovered the shimmers when his Aunt Lena had picked up Floppy Bunny and tossed him into the air, shouting, “Hi Nick! Hi Nick!” in a squeaky voice. Nick knew that Floppy Bunny did not sound that way but he didn’t mind the squeakiness because he loved the way Floppy Bunny wiggled in the air and gently tumbled downward, blurring into an airy waterfall before his eyes. The downward shimmering of his Bunny washed over him like cool water, such a beautiful motion, that Nick felt like laughing with joy. Bubbly giggles had escaped from his throat, surprising him. But they felt good, so he kept doing it.

After that, Nick always tried to reproduce the downward shimmering of objects but nothing worked that well until he discovered ribbon. He wiggled and twirled some white curly ribbon, left over from a birthday present. He was standing in the front hall, where the sun streamed in from the long window at the top of the stairs. As he wiggled the ribbon, the sunlight caught each edge of the ribbon’s curl and shone silvery white. His eyes were bathed in the snowy light that quivered in his hand and he could not move. His heart swelled up and he felt the bubble laughter again, coming out of his mouth, floating around him and wrapping him in sound while the ribbon filled his eyes with light.

A hand wrested the ribbon from his little fingers. “Nick! Nick!” Mommy yelled. “Say, ‘What, Mommy?’”
Nick looked at his empty hand.
“Say, ‘What, Mommy?’” She had pushed her face right in front of his, filling his eyes with her eyes. He looked to the side.
“Say, ‘What, Mommy?’” Again.
Now Nick remembered. The way to get the string back was to say what he heard. “What, Mommy?”
“Good boy!” Mommy showed her teeth and pulled her face back. She slipped the ribbon back into his hand. She pulled out another ribbon from her pocket. “Look, Nick,” she said. She lifted the ribbon up towards the sunlight and proceeded to twirl it as he had done.

Nick watched, mesmerized. He looked at the ribbon, then at Mommy. Her teeth were showing a lot. He drew his lips back and showed his teeth. “Nice smile, Nick!” Mommy said, her voice getting bubbly. Nick liked it when her voice got bubbles in it. Bubbles and shiny shimmery things were best.

Nick tried to make the lines in the car leather shimmer by crossing his eyes together but he had to be careful. Mommy did not like it when he did this, and though she could not see him while she drove, Dan could.

“What are you doin,’ ya freak?” whispered Dan. He could see Nick squinting at the back of Mom’s seat, as if he were reading it.
“Yes,” Nick replied, without looking up.
“I said, ‘what the heck are ya doing!’” shouted Dan.
Henry lurched around from the front seat. “Dan, he’s not a freak!”
Mommy sighed. “Danny, what is Nick doing?”
“He’s staring cross-eyed again!”
Mommy sighed louder. “Nick, do you want to listen to some music?”
“No listen to music,” Nick said, “NO LISTEN TO MUSIC!!” He shouted.
“Quiet!” Dan shouted back.
Henry dug into his pocket and inserted his ear buds into his ears. He turned his head away, and stared out the window.

I began writing this novel as a little distraction. It is based heavily in reality. (My version of reality.) I would love feedback.

A Tale of Three Brothers

“Hew, hew,” Nick said, and opened and shut his hand a few times in perfect rhythmic emphasis. He walked back and forth from the livingroom to the hallway, creak-creak, creak-creak, the spots where the floor was softer and gave way just so under his feet. The crash overhead cut short this pleasant sensation and he did not look at the source of the noise, which he knew was his little brother Dan.

“Out of my way, Nick,” shouted Dan, bumping Nick roughly in the hip as he sailed by. Vibrations coursed through Nick’s body, making him see black for a split second, and then all the familiar shapes re-formed. He knew what they all were: Dan, hall table, overhead light, doorways, but only as shapes. He found that right now he could not remember their names.

Mommy walked into view and Nick tried to run the other way, even though it would throw off his walking pattern. Mommy always asked him things and her face was too full of her eyes. This made Nick’s insides hurt.

The thing about Mommy, though, is that Nick loved the way she felt and smelled. So much that he could put up with the way she suddenly touched him, hugged him, kissed him . His skin would explode with the sensation of her hand on his arm, her body thrown against his, patting his back and blotting out all thought the way Dan’s bump had. But a second later there would be the softness, and Nick loved softness. His favorite word was “Ssh.”

But Mommy’s face was full of lines right now, he saw as he turned away, and she would not be hugging him. She would be talking, which Nick hated. “Nicksweetieareyouready?”

Nick did not know what she had said. He hoped she would repeat it. That was another good thing about Mommy; she was always willing to repeat what she had said. “Areyoureadydarling?”

Ready. He heard it this time! “Yes.” He said. “Yes” worked very often, for just about any question. When it didn’t work, Nick would choke and try to push his way out of the gray wall that closed in on him when he did not understand.

But he was ready. Ready meant shoes on, coat zipped all the way up. Mommy said, “Good boy,” and bent to tie his shoes. He studied her soft, snarly hair. His fingers itched to grab a handful but he knew that was bad. When he was little, Mommy used to let him wrap her curls around his fingers, pulling them this way and that. Nick wondered how that could happen again.

“Man, “ said Dan. “Getting yer shoes tied, when yer a teenager!”

“Dan,” said Mommy impatiently. “He is learning. It takes him longer, that’s all.”

“At least he’s ready,” said Henry, looking at Dan’s bare feet.

Nick stole a glance at his brother Henry, which was almost always okay to do, because Henry rarely looked right at him. Unlike Mommy’s liney face, Henry’s face was smooth and soft, and his eyes Nick’s favorite color: ocean blue. Henry’s face was easy for him, like a glass of milk, or that lamb that they saw at a farm last spring. Nick always wanted to touch Henry’s face because he knew how it would be, how the skin would give way under his fingers, but he knew that this was another thing that he could not do because someone might yell. Nick hated yelling most of all. Dan yelled a lot, and at him, too. Dan was like the shiny piece of broken glass that Nick had found at the beach in the summer. Dan was good to look at, because he was small and perfectly shaped. But Nick could not look at him for long because this made Dan yell. So Dan was sharp, too, and hurt him.

Nick had almost stepped on that glass at the beach last summer but Henry had seen it and yelled a warning. “Nick, stop!” Henry’s yell was not too loud, and just the right words, so they were able to break through the black that usually happened from yelling, and Nick heard him in time. Then Nick noticed the glass right next to his foot. Henry bent down and picked it up.

Henry was nearly the same height as Nick and people often thought he was the older one. Certainly he was treated like the older one. He brushed his long blond hair back from his eyes and examined the sea glass. It was amber brown, like a root beer lollipop, and almost all smooth except for one broken corner. “Almost perfect,” he said, although he knew that Nick would probably not understand.

“Look, Nick,” Henry said slowly, holding it out.

Nick looked at him, and then at the glinting piece of glass in his brother’s hand.

“It is sea glass,” Henry explained.

Sea Glass, Nick thought. Ssseeee—glasssss, he thought. “Heee, Shh,” he said, imitating the rhythm and enjoying the color of the new words, Sea Glass, which were blue and green, and looking at the glass. He would like to lick it. Did it taste the way it looked? Nick felt very happy, with the blue and green words, and Henry’s quiet face and voice so close to him.

“Do you want to touch it?” Henry offered.

Nick reached out a finger.

“Just don’t touch this part,” Henry warned. “Sharp.”

Nick stroked the glass, carefully avoiding the part Henry held onto.

“You want it?” Henry offered.

Nick said, “No want it.”

Henry shrugged, and pocketed the glass. They continued their walk, with Nick five feet ahead, as always.

“Boys! Come on,” Mommy yelled. Henry pulled on his high tops. The lace was broken, he needed a new one, had needed it for days, but kept forgetting to tell someone. He knotted it a few slots down from the top. That worked. He sighed. He heard the door slam shut below, in the basement. Nick was already outside. Dan, he would bet, was still looking for his shoes. Sure he was, because there they were, under his desk.

“Dan, they’re in here,” he called.

“Come on!” Mommy bellowed from below. She had to get to outside, because Nick was out there alone, and of course, he could not be left alone for long.

The following is the text from my Commentary that aired on NPR’s WBUR this morning. I feel it is necessary to restate my position that, despite what many are already saying, this ruling will have an impact on families, make no mistake: a psychological impact, if not an actual, legal one. Parents will feel a lot less sanguine about their chances in court knowing the burden of proof lies with them, knowing that the highest court in the land ruled basically in favor of school districts. School districts, however much they struggle with limited budgets, have the lion’s share of resources when compared with parents. And parents of special needs children already have a lot on their plates just living their lives. How many of them will be able to marshal the resources to challenge their districts and then be able to prove in a court of law that the services are not adequate? Far easier for the school district to maintain its innocence, given that they have in-house educators and legal teams at their full disposal.

“This week we are celebrating my son Nat’s sixteenth birthday, a milestone. My husband and I baked a chocolate cake that we decorated with loads of blue frosting to look like a swimming pool, along with Lego men swimmers. Because of Nat’s autism, it is difficult for us to know what he likes; he keeps a lot of things to himself. We know how he likes his cakes, though. And we know that he loves to swim but much like everything else he has learned to do, getting him to that point was years in the making, and it took tireless coaches, dauntless parents, and withstanding tantrums.

This week I also learned of another milestone, the Supreme Court decision, ruling against families. I thought about this ruling, as I dribbled blue coloring into the white icing and slathered it onto Nat’s cake. I was remembering when things were not as happy for us as today, how five years ago Nat had been expelled from a school program because he had become increasingly aggressive, and how he had to stay at home with me for months until a new placement became available somewhere else. Those days, I was scared of him, and scared for him, not knowing how to reach him. Our lawyer told us that we could sue the school, that the law – at the time – was on our side. Even with the law on our side, Nat was at home without a school program, getting worse by the day and I couldn’t get any of the school people to do anything for us. For weeks we struggled over whether to fight for Nat’s right to go to that school, ultimately deciding that we didn’t want him to be anywhere he wasn’t wanted. “This is not that sort of program,” the director of the school had told us when we had asked him to put in more supports for Nat. In other words, take it or leave it. Sink or swim.

The Supreme Court’s decision now would make a difficult situation like that even worse. Families like mine sweat and panic to figure out their children. Every milestone is a struggle, every small achievement a cause for celebration. If we don’t push, our kids may not make it. Our kids may end up at home forever, or worse — on the street, in prison. And no one, not the parents, nor society, can afford to be sending kids out into this world unprepared that way. Sink or swim should be for Lego men on birthday cakes, not for complicated human beings.”

Today my oldest boy is 16. This is always a very emotional day for me, I’m sure you parents out there can relate, particularly when it is your firstborn’s birthday.

At the beginning of my book I say,

The saddest day of the year for me is November 15, Nat’s birthday.

I want to begin this new year of Nat’s life by taking that back. I apologize to you, Nat. But your mom is still learning. Yes, the book has only been out 2 1/2 months and already I am editing it! But I have learned something new since the pub date. I guess it is in part thanks to the neurodiversity crowd and partly due to my own process that I am feeling so different today about Nat’s birthday than in previous years.

There were so many years where I would feel a blankness inside, an empty waiting, as November 15 unfolded. I would go through the motions of a mother preparing for a child’s birthday, all the while with a cloud following me around. Because I knew that none of it would have the meaning of “birthday” that I wanted it to have for him. To me, birthdays are the most fun day of the year. Until I left home at 17 for college, I would wake up on October 18 with my parents and sister and a pile of presents sitting at the foot of my bed. There’d be phone calls all day long from grandparents, cards would gather on the piano, and I’d feel like a queen. To this day, my parents and sister still make a huge fuss over birthdays, with singing into the phone and cards and presents.

So it took me a long time to adjust to the way Nat does birthdays. As a baby, Nat would stare wide-eyed at the brightly-colored boxes, and would not know what do do. I would rip the presents open for him, shout about what the present was, try to show him how to play with it, and wait. He would usually be interested in the wrapping paper. Or the box. Maybe he’d put the present in his mouth.

For years I would think about the big let-down for me, but I would not talk about it. It is only now that I realize, what a big let-down birthdays might have been for him! From his neurologically sensitive perspective, a sudden deluge of mysterious boxes, loud ripping of paper, shouting parents, new expectations — sounds like a precious bit of hell! And I won’t even go into the huge birthday parties I have thrown for him over the years.

Now I understand what a Nat birthday should be like: any other day, plus frosting. Maybe an orange balloon or two. Nothing wrapped. Cards — pretty much useless. New presents: stagger them, one a day, giving him time to absorb it.

And for me, there are no tears this year. No feeling of letdown. No heavy sighs for what might have been. I even played Melissa by the Allman Brothers, from Eat a Peach, which is the song that I was playing when I was about to give birth to Nat, the song that is sure to rip me to shreds around this time of year, because I remember my “innocent,” and “naive” self, the me who did not know what was coming.

Melissa has lost its power. I still love the song, but I am hearing it with a smile, remembering tiny Nat, fragile Nat, special Nat. There is nothing to mourn. He is himself, and always has been. No one has been stolen from me.

Thank you, Nathaniel Isaac (in Hebrew this means: “Gift of God,” and “he will laugh”), for being part of my life. It is all the richer because of you, Sweet Guy.

Here’s what we did to celebrate.

Today’s Supreme Court ruling of 6-2 in favor of the school system vs. a family with a disabled child is a real blow to all families living with disabled children. The Court ruled that the burden of proof of inadequate services rests with the family. (See below for article from the Washington Post.) The IDEA had not stated this explicitly but now our highest court has interpreted it thus. What is likely here is that things will get harder for SPED (Special Education) families. Families who already are struggling to do best by their children, to help them succeed in an increasingly complex and demanding world will now have to decide how much more they can take, how much they are willing to fight their school system for their disabled children’s education. This is a fact; things will now be even harder for disabled families and that is not fair. That is not justice. Many families will opt not to fight for better services because they do not have the resources to take their school system to court AND prove that the services were inadequate. School systems keep legal teams on payroll for any problems that come up. Most parents do not. That is an inequity. The school system is the have, the parents, the have-not.

Perhaps some are rubbing their hands together in glee, thinking, “great, fewer lawsuits!” Well, it is not that simple. Some of the most important movements in history were born or resolved with lawsuits. (Brown V. Board of Education, Roe V. Wade, the Scopes trial, for example). School systems, however taxed they may be to come up with the funds to pay for education, do not face the same kind of pain and difficulty that the families themselves face and for that reason alone the Court should have ruled in favor of the families. If the Court feels the need to address the resource-strained school systems, then they should turn their attention to a Congress that has NEVER once fully funded the IDEA since it was passed, and to an Administration that calls itself pro-family but consistently cuts programs that help families, including Title 1 and even the highly vaunted ESEA, otherwise known as No Child Left Behind.

There will be plenty of children left behind now, thanks to this despicable group of InJustices. Where is the “compassion” for children?

From The Arc of the United States

High Court rules against parents in MD. Special Education Case

By Fred Barbash and Lori Aratani

Washington Post Staff Writers

Monday, November 14, 2005; 2:11 PM

The Supreme Court, using a Montgomery County, Md., case to resolve a long-running, hotly contested national dispute, ruled today that the nation’s school systems are not legally obliged to prove the adequacy of individualized educational programs set up for disabled children.

Rather, the court said, it is up to individual parents, when dissatisfied, to demonstrate a program’s inadequacy.

The 6-2 decision, which settled a split in the federal courts, was a major blow to parents’ advocacy organizations, which argued that most families are not financially able to bear the burden of persuasion when going up against a board of education or a school superintendent. School officials across the country similarly contended that their resources would be drained by having to meet each challenge with a showing of adequacy.

The Individualized Education Program (IEP) is a blueprint for the services a special education student will receive as mandated by the Individuals with Disabilities Education Act (IDEA). Parents unhappy with the program — and there are many thousands at any one time across the country — may challenge it before an administrative law judge. But the law is silent on which party, the parent or the schools, has the burden or proof.

Justice Sandra Day O’Connor, writing in a 6-2 decision, said ordinarily the burden lies “where it usually falls, on the party seeking relief,” in this case, the parents.

She said the court saw no reason to depart from this “default” position. The law, she said, does not support the argument that “every individualized educational program should be assumed to be invalid until the school district demonstrates that it’s not.”

Indeed, she said, “there is reason to believe that a great deal is already spent on IDEA administration, and Congress has repeatedly amended” the law “to reduce its administrative and litigation-related costs.”

Joining O’Connor were Justices John Paul Stevens, Antonin Scalia, Anthony M. Kennedy, David Souter and Clarence Thomas. Chief Justice John G. Roberts Jr., whose former law firm helped represent the Montgomery County schools in the case, did not participate. Justices Ruth Bader Ginsburg and Stephen Breyer dissented, saying the majority’s decision ran contrary to the purpose of the act.

Jerry B. Weast, superintendent of the Montgomery County Public School System, called the court’s decision “a victory for special education teachers in Montgomery County and across the nation who work hard everyday to provide the best possible education for students with disabilities.”

He added, “We defended this case for one simple reason — we didn’t want our teachers and staff spending more time in the courtroom instead of the classroom.”

Michael Eig from the law offices of Thomas J. Lavin, the attorney for the family that sued the school system, said, “We’re disappointed.”

Today’s case, Brian Schaffer et al v. Jerry Weast , concerned the educational services that were due under the law to Brian Schaffer, who suffers from learning disabilities and speech-language impairments.

The process for developing an IEP is supposed to be collaborative, but can turn combative when parents and the school system disagree on what is best for a child. Traditionally, the party that challenges the appropriateness of an IEP must prove in an administrative hearing why it is flawed. The Schaffer case sought to challenge that notion.

In the Schaffer case, attorneys argued that the school system — with all its expertise and resources — was best positioned to bear the burden of persuasion, rather than the parents, who lack access to similar resources.

Parents of special education students hoped a ruling in favor of the Schaffers would give them more influence in the IEP process.

But school systems feared that a ruling for the Schaffers would force them to spend more money in court than in the classroom. Lawyers for Montgomery County Public Schools said that placing the burden on the school system would create the presumption that all IEPs were flawed from the start. It also would give parents less incentive to work collaboratively with the school system, they argued.

Jocelyn Schaffer said she and her husband knew early on that Brian had learning difficulties. He was slow to begin speaking and preferred to communicate using hand gestures and motions. Unlike many young children, he didn’t like to color or draw and had difficulty sitting still. But he excelled at physical pursuits and was able to ride a bike by the age of 3, his mother said.

When he was 2, the Schaffers hired a speech therapist to work with their son, and when he was old enough for kindergarten, the Schaffers chose Green Acres, a small private school in Rockville where the emphasis was on hands-on learning. He liked the school but struggled academically. By seventh grade, administrators recommended that the Schaffers find another program for Brian.

The family turned to the public schools. But from the very first meeting in February 1998 to develop an education plan, the school system and the Schaffers disagreed on Brian’s diagnosis.

The Schaffers’ experts said Brian had a “unique central auditory processing deficit” and required placement in a self-contained, full-day special education program.

The school system’s experts diagnosed him with a “mild speech-language disability” and recommended a setting where Brian and other speci
al education students would take regular classes, but would have an aide to help them with lessons. In addition, Brian would get 45 minutes each weekof small-group speech therapy and 45 minutes of reading and writing support every day in a special education classroom.

When the Schaffers expressed concern that the classes at his middle school were too large, the school system recommended a second school not far from the family’s home that had smaller classes.

The Schaffers declined the placement and in September 1998, enrolled their son at the private McLean School. They filed a complaint against the school system challenging Brian’s education plan, saying it did not meet their son’s needs and seeking reimbursement for the private school tuition.

An administrative law judge said the facts were evenly balanced but ruled for the school system because, he said, the parents “bear the burden of persuasion.”

The Schaffers appealed to U.S. District Court in Maryland, which sent the case back to the administrative law judge with instructions to reconsider the case with the burden of proof on the school system, and that caused the judge to reverse his ruling.

The District Court rejected an appeal by the school system, which then appealed to a three-judge panel of the 4th Circuit, which ruled 2-1 in favor of Montgomery County.

The parents, O’Connor wrote today, “in effect ask this Court to assume that every IEP is invalid until the school district demonstrates that it is not.

© 2005 The Washington Post Company

The problem with many of those who insist that autism is something that must be and can be cured is the way it changes your perspective about your child. The child can easily then become a set of problems to the parent, above all else. This is natural in the process of understanding something as huge as autism, but it is not the end of the process; seeing the difficulties of being atypically neurological is only the beginning. Understanding autism is a way of understanding the child you have; it should not be the will to change the child, the drive to make him “normal.” Helping ones child is one thing, and a good thing. Being miserable over who your child is, being filled with shame over his eccentricities, his stereotypical behavior, his self-stimming — this can be avoided. But viewing the autism as simply a negative can only lead you to be miserable about parenting this child. The “must eradicate” attitude drives parents to be nothing but nutritionists, behaviorists, and therapists, for their children. These parents, however motivated by doing their children good, end up spending most of their parenting time trying to subjugate aspects of their children.

I am not naive. I have been there. I understand how difficult autism can be, particularly when it is manifested by a sensory overload that contributes to aggressive behavior, screaming, throwing things, etc. I know how painful it is to be a mother whose child cannot express himself the way you understand expression. I have lived with my son’s autism for just about 16 years, and I am just beginning to understand how much I did not understand.

How simple it is, really.

The answer is to try to understand him, the child, the person. To try to get inside his head, instead of forcing him to answer to yours. To give him the tools for communication, such as speech therapy, picture exchange systems (PECS), reading lessons, sensory integration therapy, etc., and then praising his progress. Most therapies, even the biomedical, work towards easing difficulties that arise from autism. These therapies help him get his words out, and make some meaning of the world around him. But if these therapies are administered with the intent to squeeze out the autism, to pound it out of the child, then I believe you will only encounter unhappiness with your child. I have encountered this with so many autism parents: the sweating over the progress your child did NOT make in a given IEP period; getting so anxious that your child notices it and falls apart; the refusal to understand that there is different neurological wiring at the heart of it that must be acknowledged. You get what you get and you don’t get upset, as my 7 year old says. Your child perceives the world differently and it is your job to accept that and to love him as he is first, and then to help him acquire skills to live successfully in the world.

Autistic children are thought to be almost creatures by some parents and many professionals (unwittingly); collections of behaviors or chemical imbalances that must be corrected. The underlying message, when you believe this, is that you are not good enough as you are. But autistic children have feelings, are sensitive to others’ feelings, and maybe even moreso than NT (neurotypical) children, because they have their own kind of focus. Imagine not being able to blot out all the sensory information around you. You might end up perceiving more than the average NT person; in fact, it is quite possible that the sky’s the limit in what you process because you process so much.

The time has come to stop pitying and mourning for the autistic child, and instead, to tune into him and figure out what he is seeing. What he is enjoying. It may not be something you can relate to; that doesn’t mean it has to be channelled into something else. Maybe he sees that string wiggling in the lightbeams as something incredibly beautiful, more beautiful than you can ever imagine. Why not assume the best? He is your own child. If he seems happy, maybe he is. The unhappiness comes when he intersects with a world that pressures him always to be different, or when he cannot let his vision out. Acceptance and communication. We need more of it in this difficult world.

We went with some friends to see the Star Wars exhibit at the Boston Museum of Science. I have to say I was a tad disappointed, because it was so hard-core robotics and magnetics. Lots of gray, black, and light blue colors. Very male, very Y chromosome. Nothing girly at all. Just think: they could have shown Amidala’s state costumes. Spectacular!

I love the Star Wars tale, but always wished that George Lucas had used a better writer to do justice to his wonderful ideas. Imagine if the dialog had been real, as opposed to stilted and stiff, and if the characters had real depth and complexity. For instance, what the heck happened to the warrior-stateswoman Padme- Amidala? By Episode 3 (or the last one, as people in my generation think of it, because in my mind Episode 3 will always be the tragic Ewoks one) Padme was reduced to a trophy wife who stays at home and incubates, wearing Barbarella-esque costumes and 1960’s makeup and hairdos. Almost an abused wife, living with a stalker (Anakin-Vader).

Also, wouldn’t it have been great to understand more about what made Anakin cross over to the Dark Side? For instance, my friend’s theory is that Anakin’s father is really Emperor Palpatine(!) Brilliant! She pointed out to me that they both have the same cleft in their chin, as does Luke Skywalker! Therefore a case could be made that Anakin always had a little bit of a sullied gene pool. But I always thought that there should have been more to make Anakin turn bad than just fearing for Padme’s death; it started before that, when he killed all those Sand people because some of them killed his mother. I think that in addition to that, maybe Padme could have cheated on Anakin with Obi-Wan! Why not, he’s cute, too! And so very authoritative. Kind of reminds me of my Ned…

What does it mean that Anakin’s looks have always reminded me of Max?

It’s that red and green time of year again. I know because I go to the mall a lot and the change-over has already occurred. Lights, trees, fake presents, carols.

I am Jewish, in sort of a mostly-assimilated, suburban-American kind of way, where Jewishness has few actual outward definitions (it is kind of a state of mind, a cultural affiliation, and of course, certain beliefs in God and how best to live one’s life that I won’t go into here). I was raised to believe that Christmas trees and Christmas decor, and pretty much everything Christmas, is the domain of the Christian, meaning, “not for us.” No problem; as a child, I would watch my neighbor’s rooftop waiting for Santa to land there, knowing he did not come to my house. When I tell Christian friends that story they feel sad; I just smile, however, because I really did not ever feel the lack, even without Santa. My family made holidays very special, whether they were Jewish holidays, or relatively non-denominational holidays, like Thanksgiving or New Year’s Eve. For Chanukah, we had our tinsel Jewish stars and dreidels, our candles, potato latkes, chocolate gelt, one present a night for eight nights, and our electric menorah in the window. I was happy with all that.

The one common denominator for me and my Christian friends were the three Christmas T.V. shows that aired at that time (the late 1960’s): The Grinch, Rudolph, and A Charlie Brown Christmas. There were really only those three, (well, there was also Frosty the Snowman but that was a bit lame), and my parents watched them with us, which told me that these must be high quality shows, stamped with that special “K” for Kosher. They each had their great parts: The Grinch had its tense moments of theft, when Mr. Grinch was stealing stuff from all the unsuspecting Whos; Rudolph had the extremely scary Abominable Snowman (Dad would cover my eyes to protect me); and Charlie Brown had his wonderful friendship with Linus. Linus, the loyal friend, who stood up for Charlie Brown, who braved his bitch sister Lucy’s anger and the rest of those bullies to show everyone “what Christmas is all about!” And to me, that was the coolest thing: Bible-quoting Linus, and then, the tiny pathetic tree that becomes a vivid, fully green tree after he wraps his blanky around it, and gets everyone, even that faithless dog Snoopy, to help decorate it. It was at that moment that I would have pangs about this holiday that everyone but my family celebrated.

And then there was the color. Christmas would spring up overnight, sometime after Halloween disappeared from the stores, and the world would be awash in color, mostly green and red, the ultimate in Goyishe* decor. And that was where the real envy set in. Even as a child I was sensitive to the fact that Christmas decorations were way better than Chanukah. The colors were rich jewel tones, whereas how much can you do decoratively with blue and white? Even if you cheat a little and use periwinkle and cream, it seems wrong for that time of year. One year, a few years ago, I made these garlands of periwinkle silk flowers and ribbons, and festooned them from my porch roof. I wove them through with little white lights. But guess what? When nighttime came, mostly what you saw were — lights. And that made my home look like it was a Christmas-celebrating home, which it could not be.

My Christian friends don’t understand this. “You can have lights, Sue.” No, I just feel like I can’t. Lights on my house, when not emanating from a menorah, signifies Christmas to me, which is a beautiful holiday, but not my own. It just doesn’t feel like me, and I can’t explain it more than that.

Until today. My husband showed me this tree from Urban Outfitters!

We may have found the perfect solution for Jews of a certain age suffering from Christmas Envy.

*not meant to offend, but merely to describe something as “non-Jewish.” As Seinfeld said, “Not that there’s anything wrong with that!” 🙂

An interesting thread came up on a favorite blog of mine. The question was about how there is a real need for the autism advocates to let the voices of autistics be heard, and not just think that we (parents of autistic children, advocates for the autistic) know it all. This is true, of course. Who better than autistics to represent the views and issues of autistics? But I also think that we all have to remember that there is a whole spectrum that falls under the autism umbrella, and that some autistics cannot speak for themselves. Other forms of communication should certainly be developed, that goes without saying!

The thread went on to blast me for arguing that parents are often the best advocates for autistics, if communication is an issue! The question asked of me was:

would you want men speaking for women?

How on earth are they the same thing, I wonder? Besides, yes, I believe that there are some men who are wonderfully empathic and capable of speaking for women. A sensitive person is a sensitive person, no matter the gender or the neurological wiring.

So I responded by saying that parents of autistic children are trying to help their children be heard, and I gave the example of how I drag Nat to speech therapy weekly. But the response to this was that

“speech” is not the same as communication, and that in fact some of the best autistic communication has come from autistics who don’t/can’t talk.

I was stymied by this. I then asked, if speech is not the way to go, then what is there? What am I overlooking? Shouldn’t I, his mother, be trying to give him as many tools of expression as possible? How else do I find out what is on his mind? I can’t read his mind!

What am I missing here?

My teenage son is gorgeous. This is a fact, not a brag. Thick wheat-colored hair feathers back from his oval face, large sapphire eyes take it all in. He is six feet tall and lean, and at sixteen, his shoulders are just beginning to broaden. He looks like a grown Macauley Culkin. He acts more like the young Macauley Culkin, however. My son will probably never have a girlfriend – or a boyfriend, for that matter. My teenage son Nat is autistic.

This is not where the story ends, however. This is not a “poor me” piece. Don’t cry for me, Internet. Nat may be autistic but he is not hopeless. He is learning how to hold a job, and how to live on his own. One day, he may be able to do that. The thing that’s bothering me, though, is the girlfriend bit.

Is it strange that I, his mother, long for him to find love? I found myself thinking about this the other day. He was watching Disney’s Beauty and the Beast, which he has been doing a lot lately. I wondered how much of this he understood. Did he feel the sadness of the Beast, who is not a man on the outside, but on the inside, and no one can see it? Did he long for love the way the Beast longs for Belle? How much does he wish that someone would see beyond his autism and love the young man inside? Or does he imagine himself more as Belle? Or Chip, the boy teacup? What age does he think of himself? He cannot even express to me what goes on in school on a given day; how much does he understand about anything? It is like wondering what babies know. Can babies think, if they don’t yet know words? What about a young man who doesn’t use words, but seems to follow the plots of movies? Who can follow at least two-step directions?

How do I know what he knows?

If Nat can understand Beauty and the Beast, then presumably he can understand his own plight: a man trapped inside irregular neurological wiring. He watches the movie, sitting up tall and alert at the climax, where Belle mourns over the Beast’s body, and cries, “I love you” at the very end of the Beast’s life. Her words break the spell, and he revives, a man at last. But Belle does not simply rush into his arms when he presents her with his human face. She looks carefully into his eyes, to find the Beast she knew, the Beast she loved. Only then does she say, “It is you!” He watches this with a tender expression. I think.

But then again, he laughs hysterically when Belle and her horse are being attacked viciously by wolves.

I want love for Nat, like Belle’s. Except for the looking-in-the-eyes part, because he hates that. But I want him to find a young woman that does not mind the behaviors or the cognitive delay. I want him to feel his heart fill up when she looks at him, so that he can know that what he loved in the movie is something that is real. I want him to make that jump, from living on the outside, looking in, to actually being a part of the best that life can offer.

I want him to be the star of the show. I want him to rock the world. I don’t want to just let it all go. Not yet. Though group homes, personal care attendants, and minivan rides to the mall may be in his future, I want love to be in his future, too.

Is that asking too much?

Dr. Roger Alan Bauman has died. He was husband to Dr. Margaret Bauman, who is our son’s neurologist, the very first to actually use the “a” word (autism) when referring to Nat’s issues. A very brave and wise woman, she is a hero across the world for her pioneering work in autism research, but perhaps even more for her humor and gentle touch with our very sensitive children. My heart goes out to her as she grapples with the loss of her husband.

As part of the obituary notice in the Boston Globe concerning Roger Bauman, Boston.com has an online comment book for Roger where persons can post online messages. Friends and colleagues of the family can post messages. It would mean a lot to Roger’s family.

Please say a prayer and visit the book for Dr. Roger Bauman.

Like everyone else, I participate in some email discussion forums. Over time, you start to have a feeling for what various people’s posts are going to say, or at least what they are going to be like even before you read them. And when there is a flare-up on a list, it is a very interesting, sometimes painful look into human nature. My husband sent me this link on Internet forum Types, which apparently has been around for a while, but I thought it was worth posting. Take a look, and try to see which Discussion Group Archetype/Flame Warrior you are! (Be honest…)

My friend NancyBea is a kindred spirit of mine with an incredible eye. She is a painter and a photographer, and her work fills my heart every time. Take a look at this tree on her blog:

I was going through my Junk email, thinning it out, when I saw the subject line: “Sexy baby, bad erection?”

I thought: How in the world did that particular spammer think something this lame-o would ever get through? At least some of the others are more imaginative when they try to disguise their pathetic ads: “Re (8): hi” and if you dare click on it, who knows what scary thing you’ll see!

So Ned showed me this funny answer to pathetic spam: Responsible Spam