We knew when our son was diagnosed as being on the autism spectrum, that there would be challenges. Most of the parents who I have met who have children on the spectrum have war stories. We all strap on our armor and fight every day to make sure our child gets whatever he or she needs.
I had no idea the first battle would come so soon.
It was after our first parent-teacher conference that we opted to get our son tested to determine if he was indeed on the spectrum. My son’s preschool teacher noted that he was incapable of paying attention for reasonable periods of time, and that his speech and social skills lagged behind his peers. She immediately suggested an “educational specialist” to evaluate Little Man in the classroom. We also opted to also have him tested by a child psychologist who specialized in spectrum disorders.
When the diagnosis came back, it wasn’t a shock, but it was a blow. What came next, however, was a total surprise.
We were invited to a meeting with our son’s teacher and the “educational specialist” to discuss Little Man’s needs. There were hints that Little Man would need special assistance, and that assistance might be more than the teachers currently could supply.
Being the kind of person I am, I began to do my research. I asked Little Man’s doctors and therapists what kinds of things could be done to address the attention-span issue. I started asking about his education. Should he be “mainstreamed” i.e. kept in a classroom with kids who by and large do not have learning disabilities, or would he really be better off in a “special education” classroom with other kids with spectrum disorders and other disabilities? How reasonable were our expectations? What could we do now to meet his needs in the best way possible, while still keeping as many opportunities available to him for the future?
It’s important to remember that autism is a spectrum disorder. That means that for every kid that fits the stereotype of the uncommunicative, in-his-own-world, hand-flapping, toe-walking tragedy, there is a kid who is smart, engaging, and appears by most observers to be a normal child. The spectrum includes not only both extremes, but everything in between. There is no single, surefire approach for addressing a spectrum disorder. Not only are there different levels of affliction, there are different kinds. The symptom cluster for asperger’s will look different from classic autism, and even within these diagnoses there will be a wide range of symptom clusters. Any solution that I would come to with respect to my son would be highly individual, and is by no means a silver bullet appropriate for every kid on the spectrum.
Working with my child’s doctor and therapists, we came to the conclusion that because Little Man is intelligent, fairly high-functioning, and right now isn’t behind scholastically, mainstreaming was an important goal for him. Keeping Little Man with normal (or, more appropriately, neurotypical) children would not only provide him with more opportunities to learn important social skills, it kept him out of a “special ed” class that might not provide the level of educational challenge he’ll need later on, and might prove difficult to get him out of once he was placed in it.
The psychologist suggested a “shadow,” an adult assigned to Little Man to redirect him when his attention wanders. Shadows are a pretty common accommodation made to kids on the spectrum and with ADHD, and generally speaking, they work pretty well.
After several false starts of trying to have a meeting, we finally settled on a Thursday morning. Unfortunately, I had to be in Chicago that day, so my husband went to the meeting alone. We thought we were going to discuss what Little Man needed in the classroom. In preparing my husband to attend the meeting, we discussed the approach. We wanted Little Man to stay in this school. We were prepared to offer to pay for a shadow ourselves if the school was unable to provide one.
When my husband got to the meeting, however, there was no discussion. The head of the school, along with his preschool teacher, had one message to deliver: Little Man would not be welcome to come back in the fall. They didn’t feel like they could handle him. When my husband asked to discuss options, he was met with a blank stare. “It was clear by the way it was presented that they had already had a discussion privately and made their decision and were not prepared to hear other ideas,” my husband told me.
I was in a taxi on my way to my hotel in Chicago. I burst into tears. I was disappointed. I was shocked. I was scared. But most of all, I was angry. How dare they? This was a school that prided itself on being “inclusive,” of fostering the arts and of having a very progressive outlook. Apparently none of those ideals extended to kids with spectrum disorders.
The day was schitzophrenic. On the one hand I was desperately trying to keep my composure in the business meetings that I was involved in that day. When I wasn’t in meetings, I was losing it all over the place. I called several of my friends in my support network. The hotel staff took notice of my plight (I wasn’t very good at hiding my distress at check-in) and bent over backwards to try and soothe me, even though they had no idea what I was on about other than that I had “gotten some bad news” on the way in from the airport.*
But it was my friend Peige, the veteran of the New York private school scene, who gave me the best advice, who put a fire back into me and gave me back my courage and resolve. On the way back home from the airport in DC, she told me over the phone, “That’s really shocking, Liz. Honestly, even the most elite private schools should work with a parent in this situation. You need to go back to them and make it clear that it’s not that easy to make you go away,” she told me.
I realized that she was right. The following Monday I went to the Head of School’s office and made it clear that I was disappointed with what had happened in the meeting. I told him that we hadn’t had a full and broad-range discussion of the options, and that there were a number of things that could be done to meet John’s needs without taxing the school’s resources or the limitations of the teaching staff. Little Man clearly wasn’t a behavioral problem and was forming relationships with his peers, even if they were not as well-developed as they could be, and he had all the scholastic knowledge anyone should require of a three-year old. In short, Little Man had a lot of strengths to go with his weaknesses from his disability. If at the end of the discussion, we still felt that Little Man didn’t belong at the school, I would be fine with that, but not having that discussion was inappropriate. He agreed. We scheduled a meeting for the following week.
The meeting included Little Man’s psychologist, his speech therapist, his pre-school teacher. They spoke to the Head of School in his office. I was excluded in order for the discussion to be more “honest.” I found that request a little strange. The request that I permit their discussion to remain “confidential” even stranger. But I was also smart enough to know as an attorney that if I wanted to legally compel the contents of that discussion I could. Nothing between my son’s doctor and the school could be considered legally privileged. If it made them feel better to think it was confidential, hey, knock yourselves out. I’d find out what was said if I needed to, one way or another. Besides, I had spoken to both the speech therapist and the psychologist, so I knew exactly what they were going to say, and what their recommendations were going to be. They were on my side, after all.
When the discussion was over I went back in the room. The preschool teacher mumbled something about having to be someplace and excused herself. I knew from the look on the speech therapist’s face what was coming. It was still mildly surreal. The Head of School acknowledged that he had heard that a mainstream environment with a shadow was what was best for Little Man. However, he said, “it is inconsistent with our Montessori philosophy to have that many adults in the room. There are already two teachers and a floater and a shadow would compromise our commitment to a Montessori environment.” Little Man was still not welcome to return in the fall.
Yes. He really did say that. The speech therapist was sitting right next to me when he said it. I was in disbelief. He was really going to use that as his rationale. It was clear to me that the whole meeting had been a farce, an attempt to humor me as opposed to a genuine consideration of what was best for Little Man. It didn’t matter who I brought to the meeting or what they told the school about what Little Man needed or what would work. They weren’t even considering changing their minds.
I was angry. It was a whole other level of angry that quite frankly, I didn’t think I was capable of. I didn’t lose my cool, however. I found it surprising I could be both that angry and that composed, but somehow I managed it. I told him I was disappointed. It told him that he and the school were missing an opportunity. I told him that I felt that he was copping out. And I told him they were missing out on a great kid.
There are a number of flavors to my anger, and I am not sure which is the most infuriating. I am appalled that in this day and age, a school that prides itself on being such an inclusive and progressive and excellent educational institution should have such a backward notion of kids on the spectrum. It was clear to me what was going on. The teacher didn’t want Little Man in her class because he was not like the other kids. He wasn’t the picture of perfection. He was smart, perhaps smarter than most of the class, but it would take some time and effort for him to reach his full potential. It sure is easy to have such a great reputation as educators when you cherry pick your kids, including only those whose academic excellence is assured from the outset.
I was infuriated to find out that this desire for perfection seemed only to extend to kids whose imperfections were actually disabilities. One of the kids in Little Man’s class chronically, hits, kicks, or bites other kids in the class. Every single day the child is sent inside from recess because of the behavior. And yet this child, an obvious behavior problem, has received an invitation to return in the fall, while my son, whose sweet disposition is universally acknowledged, is excluded.
The invocation of the “Montessori philosophy” was actually insulting. Sure, Montessori education does place emphasis on self-directed learning, as opposed to adults directing education. However, Montessori education also distinguishes itself with its emphasis on inclusiveness and meeting a child where they are developmentally. There were as many reasons why accommodating Little Man was actually consistent with Montessori philosophy as there were reasons why it might not be. It was a fig leaf, an excuse. It was what they turned to because I had already deprived them of any legitimate objections they might have. The decision was made, and nothing anyone did or said was going to change it.
I’m still considering my options in the wake of what happened. One of the only good things to come out of the “No Child Left Behind” act is that it made autism spectrum disorders protected disabilities under the Americans with Disabilities Act. That means that I probably have a good claim to sue the school for discrimination. Legally, schools are required to make reasonable accommodations to children with protected disabilities. I offered something more than reasonable, and they not only did not implement it, they refused to consider it and offered a bullshit answer about why. Such a suit would get Little Man back into the school, and create precedent for other kids like him to get fair treatment from schools.
On the other hand, lawsuits are time consuming, money consuming, emotionally draining affairs. And they are a lousy way to try and achieve a moral victory. Usually when friends come to me and ask what I think of a suit like this, I reply that the more important thing is to get the basic needs of the injured person taken care of. In this case, the focus really needs to be on getting my son into a school that will provide the educational experience he needs, a school that will work with us as opposed to against us. I haven’t ruled out the possibility of a suit yet, but my inclination currently is that it’s not an efficient solution.
A dear friend of mine, one with connections to a local TV station, wants me to go to the media with my story. While that would certainly cause great pain to the school, it places our family squarely in the center of a media storm over which we will have no control. The level of intrusion into our lives would be significant, and it places us in the role of being rabble-rousers in a community that is still very small. And the truth of the matter is, I’m not sure if it would really be newsworthy if we have decided that we are not going to sue the school to try and force them to take Little Man back. It would basically amount to an attempt to use the power of the media to blacken someone’s eye. And I’m not sure that’s news so much as vengeance. And vengeance has a nasty habit of backfiring on the user.
There are other options, of course. I’m considering them carefully. My criteria are that the solution, whatever it is, be efficient, elegant and painful. I have a few ideas in mind. I am very creative. Ultimately, I know Little Man will have his day, and the school will live to regret its behavior enough that those who come after me will not be treated similarly.
The other thing is, that as reprehensible as it may be that an independent private school should be engaging in this kind of blatant discrimination, it isn’t the worst thing that happens to kids on the spectrum as they seek education. Ask any parent who is working their way through the public school system under the IDEA program and you will get an earful. Under IDEA, kids that meet the threshold of being “learning disabled” are given an Individual Educational Plan (IEP) that details what educational goals a child will be expected to meet, and what accommodations and resources will be employed by the school district to get him or her there. A school district must provide resources to any child who meets the threshold of being disabled under the act. Under IDEA, the IEP must be agreed upon by both the parents and the school, and there are complicated appeals processes by which parents can challenge an IEP decision if they do not agree with it. The IEP is reviewed every three years and updated as necessary.
It all sounds great on paper, but the reality of actually being in the system is far different. For one thing, special needs education, because it services fewer parents than other programs, is usually ripe for being slashed when there is a need to cut budgets. The head of one of the local county school districts (not mine, thank god) is actually on public record as saying that he has a choice this year of cutting football or special ed, and he’s certainly not about to cut the football program. As is true in most school districts, if you cut special education, you’ll get a few hundred parents at most upset. Cut back on a major athletic program, and thousands will beat an angry path to your door to complain.
In fact, in the special education program, there always seem to be too many kids chasing too few resources. Schools are incentivized by the budget crunch to fight against parents’ requests for resources, particularly if they are costly, like providing a shadow. Parents have to be included in any meeting regarding an IEP, and a right to challenge any decision they disagree with, but that means protracted fights with school administrators and other officials to obtain even basic needs. And while I am lucky to live in a county that has an excellent reputation for having state-of-the-art classrooms for special needs students, including a very highly rated special needs preschool program, most counties don’t have those kinds of resources. For many kids in less affluent parts of the country, being shunted off to a special education classroom or a resource center even for part of the day can be a horrifying option that essentially dooms a child to substandard education.
Kids also can become the victims of their own successes and strengths. Because counties are required to provide services once a child is shown to meet a certain disability threshold, there is the temptation (especially in a time of budget crisis) to push borderline kids who could benefit from services out of the program by rating them just above the mandatory threshold. Kids who thrive after receiving certain services may have to fight all the harder to justify getting those services again when their IEP comes up for review, because the temptation on the part of the school district is to claim that the success now begs the conclusion that he is no longer in need of the service, which may or may not be true.
Sure, one has to wonder how the Head of School at my son’s school can look at himself in the mirror without puking knowing he’s thrown a three year old under the bus. But he’s not even the worst of the kinds of people I will have to face as I work through the problem of getting my son an education. And it won’t matter whether I go public or private, I will have to fight for everything he needs. In the case of some private schools, it will be a fight for the right just to attend in the first place. In the public school, it will be fight to assure that he gets the best education possible and the resources so that he can effectively learn. At every turn, administrators, teachers, even parents and other students, will actively work against my son’s best interests.
At my son’s school, there is a boy in the seventh grade who has autism. He had it when he first started attending the school in first grade (he was never in the Montessori program and never encountered my son’s teacher), and while the teachers were made aware of his condition, the other students and parents were not. He never had any special accommodations. When I first told his mother about Little Man’s diagnosis, she of course reached out to me. We’ve talked a lot about her experiences trying to mainstream her son, undercover and without accommodation in a small private school, and her willingness to share with me her story has helped me more than I can say.
But the thing she did that was most helpful was introduce me to her son. For those who don’t know he has autism, he seems shy and a little weird. But if you know what you’re looking at, you realize that this is an intelligent, composed, earnest, kind young man who just happens to have a disability. He’s the kind of boy that we should all hope our children would be. For all the doubts his mother sometimes has about whether she has done right by him, he is someone that she should be (and is) very proud of. He has not had it easy. He has suffered much at the hands of peers and parents and educators who did not understand him. But he still stands here, resilient, hopeful. “It gets better,” he told me.
I want to believe that is true. And deep in my heart I know it is. But I dream of a world without this war from inside my armor, still gripping my sword in hand. Because the arrows are still flying all around me, and I am not out of the fray yet. It’s a war that many of you do not know we are fighting. It’s a war that as the economy slides will grow more desperate. And because we are fighting for our children, it is a war that we cannot afford to lose.
* I do want to extend a special shout-out and thank you to the James Hotel in Chicago, and especially to Ana and Marco, who were working the concierge and check in desk that day. I have never met two hotel employees with more compassion and discretion. They took care of me without intruding, and were gracious and genuine in their caring. I really do want to encourage anyone who is planning a trip to Chicago, or who lives in Chicago and wishes to put a friend up in a hotel to patronize the James Hotel. They were incredible from start to finish, going above and beyond the call of duty in the kindest way I could ever imagine. Y’all have made a loyal customer out of me.