by Margi Nowak, Ph.D.

A few years ago, when my then preteen son and I went to Olympia to learn how to advocate for people with disabilities at one of the Advocacy Day Wednesdays held during the legislative session, I met a woman whose attempt to triumph over inexpressible pain stunned me to the point of mute but profound admiration. She was one of the people who acted as "lunchtime mentors" to those of us who had come for the day to introduce ourselves individually to our state representatives, and she was also the mother of a son who had died of Niemann-Pick Type C -- a hideously relentless neurological disease that inexorably kills male children who begin developing normally and then slowly lose all functions, inevitably deteriorating and dying before their teen years are over.

Truly, this woman knew a kind of parental pain that the rest of us hope never to experience, let alone understand -- a pain which might be seen as being at the extreme end of a continuum embracing all manner of disabilities ranging from those that guarantee acute physical suffering and premature death, to those which are virtually invisible. Deeply grateful for my experiential ignorance of the former kind of disability affecting a child of mine, I am, however, very familiar with the latter kind of pain: being the mother of a child whose disability is hidden rather than obvious. In extended family gatherings, in the classroom, in informal groups among age-peers, and in society in general, such children may at first glance appear to be "just like everyone else", for they use no wheelchairs, have no feeding tubes, and show no physical signs of pathology. But make no mistake about it: invisible neurological disabilities -- particularly those which give rise to behavior patterns that differ from the expected norm in ways that bring forth negative judgments about child and parents alike -- can indeed cause tremendous emotional pain for such children and their parents too.

As a member of an international on-line community focusing on one such disability, I have four years' experience reading the stories shared on a private listserv by hundreds of other parents as well as adults who themselves have the same neurological condition. I have also participated actively in a Washington State support group for people affected by another neurological condition, and I regularly read an online support newsgroup related to this disability too. In addition, I am also a cultural anthropologist and an educator who has created a course on disability at my university. My observations concerning the situation of children with invisible disabilities within the educational system are thus filtered through several different but complementary lenses: emotionally involved parent, theoretically informed researcher, pragmatically interested professor. No matter which way I look at the situation, however, my conclusion is the same: for such students and their families, the educational system is the site of far too much needless pain even as it wastes far too much human potential.

At the root of this unnecessary suffering and waste, I believe, is not simply "the bureaucracy", with all its entrenched, inflexible, and even Dilbert-like propensity to make positive and creative systemic (as opposed to incidental) change well-nigh impossible when proposed by relatively powerless people from "the bottom" of the system. In addition to this structural tendency for systems -- however terrible they might be for some individuals -- to stay basically the same as a whole, I believe there is also a corresponding ideological reason for this state of affairs. At issue here is the underlying question of expertise. The determination of what is "true" or "acceptable" or "best" in a particular social (or educational) system is typically made, in the end, by those with the power to make the determination "stick". In the words of a phrase suggested by Michel Foucault, these "regimes of truth" thus operate in an inherently circular manner, with the "legitimate knowledge" of the gatekeepers and decision-makers depending for its legitimacy on the assent of those whose "legitimate" expertise has put them into positions of power in the first place.

How does this translate into the real lives of students with invisible disabilities? Typically, it involves what their parents see as an almost unwinnable (even if not formally declared) battle between two competing camps of "experts": the bureaucratically and hierarchically organized school system, fighting to break even if not win a numbers game against the scarce resources and limitations of budget, space, personnel, technology, training, and even taxpayers' good or ill will toward public education, versus the comparatively tiny, desperately pieced together, much less "legitimate" circle of people who, for reasons of love, commitment, and sometimes money (for those families who can afford it), act as advocates for such a student.

The very first "campaign" of such a battle -- getting the child officially recognized as having a disability requiring special accommodations -- can confront the parents with an even more painful shock than the one they had to face when they initially recognized and acknowledged that indeed their child is "not normal". In the vast majority of cases, students with hidden disabilities are not labeled as such in their infancy. Rather, parents have to absorb, little by little, the painful fact that their child is undeniably "different" from other children in the family, neighborhood, day care center, play group, or preschool -- and that this difference is causing their child to be left out, humiliated, taken advantage of, and above all, negatively judged by children and adults alike. As difficult as it might be for parents to accept this reality and then try to move on and help their child navigate through life, if the disability in question happens to be one not well known by the general medical and educational community, the parents then have to face the second painful shock: doctors and educators typically do not appreciate being told by "mere parents" that their label for their child's difference (e.g. "behavior problem", or "attentional difficulties") is wrong or incomplete, and that "something else" is going on with this particular child.

In fact, "getting the proper label" can occupy years of the child's early educational career. To illustrate with one particular disability, Asperger Syndrome (a variant of high-functioning autism) is a neurobiological condition marked by, among other characteristics, serious social skill deficiencies, especially with age-peers. It is often accompanied by moderate to severe executive dysfunction -- that is, the individual can have enormous (and in some cases irremediable) difficulties planning, initiating, organizing, prioritizing, and completing required tasks. At the same time, however, many children with AS are highly verbal, especially with adults, and another characteristic of the disorder -- fascination with, and astonishing expertise concerning, a "special area of interest" (e.g. dinosaurs, sports statistics, trains, sharks, carnivorous plants) -- makes them seem, in their early educational years at any rate, like "little professors", hardly needing remedial academic attention.

And so, the stage is set: the parents, hearing the child come home from school day after day with tales of woe, especially from the "nightmare" periods of the school day for such a child -- recess and lunch -- see their child as having enormous needs for help and special consideration, while the teachers and other school personnel, seeing the same child reading considerably above grade level, often determine that the real problem here is an overprotective mother who refuses to allow her child to face the consequences of his inappropriate and blameworthy behavior. In the meantime, the child, who, because of his "weirdness" in his peers' eyes, will inevitably have attracted the attention of "predator" types of students, will find himself set up again and again as "prey". This is the child who is the perfect "victim" for set-ups. His neurological wiring is very likely to make him hypersensitive to stimuli involving sounds and touch as well as to obsessive-compulsive "mental looping" over perceived injustices. A soft, insistently repeated noise, inaudible to the teacher but calculated to "unnerve the nerd", a tiny, personally meaningful object such as a special pencil, taken and "only borrowed" from such a student, a quick poke here, a "misplaced" lunch there -- and the "weird kid" can be counted upon to explode in what to the predators is a highly entertaining display of socially inappropriate, clumsily expressed rage.

Eventually, after such a student accumulates sufficient battle scars from such episodes, and attracts sufficient negative attention from teachers for "not turning in work", his parents' first campaign in their battle to secure some sort of accommodations for their child will be over: he will very likely become a "focus of concern". But the official, bureaucratically bestowed label he will probably receive at first is not likely to result in a placement or system of accommodations that special education or 504 law so ideally seems to promise. Instead, such a student will typically be squeezed into whatever existing places and services his school already provides for "kids with problems", and he is all too likely to be labeled as qualifying for these services on the basis of having some "other health impairment" such as severe behavior disorder (SBD), oppositional defiant disorder (ODD), or attention deficit disorder (ADD).

Such a label, typically involving at least partial-day placement in a "learning resource room" (LRC) will then, because of limitations of space and personnel, typically put the student in what one researcher of Asperger Syndrome has called "the worst possible environment for this type of child". What this individual so desperately needs is constant, supportive, guided exposure to the very best peer-age role models in the school building, and what he often gets instead is a segregated experience with special-needs students whose different issues and problems make them the very last people on the planet likely to tolerate, much less nurture, the "Forrest Gumps" of the world.

If this all-too-typical train of events is not already depressing enough, it is, in addition, highly likely that at least some of the students with hidden disabilities such as Asperger Syndrome may also be gifted (even though their work output may still be "substandard" according to "normal" criteria such as grade averages). Here the personal tragedy of "wrong placement" is compounded by a sad and sorry waste: neither the student nor society in general is ever likely to benefit from what could be exceptional intellectual or artistic abilities. Instead, in these sorts of cases such talents will appear merely as quirky flashes of odd genius, garnering for their holder none of the specialized and sustained guidance needed for these gifts to develop to their full potential. All too often, school systems justify their refusal to let such students gain entry to special programs for the gifted and talented by citing the "normal" requirements, forgetting or ignoring the fact that for these students, life is never going to be "normal". Furthermore, what the gatekeepers often confuse in such situations is the difference between exceptional abilities and the "normal" display of these qualifications. Some disabilities, particularly those that involve executive dysfunction, mean that for the person's entire lifetime, his or her ability to meet certain standards of achievement is always going to be compromised. How sad for the school system to use one or several of the symptoms of an invisible disability -- which is emotionally painful enough as it is -- as justification for exclusion from what could otherwise, if done right, be a genuine avenue for success.

Even without the issue of giftedness complicating the situation of students with hidden disabilities, the problem of securing the "proper fit" between student and program typically involves endless and exhausting negotiations between home and school. While perceptive and caring individual teachers may, here and there throughout a particular student's career, make a tremendous difference in one or another classes such a student may take, the educational system as a whole is woefully unable to maximize the potential of all the "square pegs" who just cannot be made to fit into "round holes". Privately, among themselves, many parents of children with such disabilities have often had furtive thoughts of wishing for a temporary switch: "Just for a few days, let them see my child in the body of a Stephen Hawking. Perhaps then maybe they'll notice that not all brain impairment equals intellectual impairment, and also, perhaps -- God forbid -- if my child looked so disabled, perhaps then we could then finally stop fighting to get appropriate services".

As more than one such parent has further observed, the prevailing wisdom among the battle-weary is that the decision-makers in educational system all too often wait for the child to fail (or the parents to threaten to take legal action) before finally deciding to allocate funds and resources to provide more appropriate accommodations. And, in line with the observation that educational bureaucracies operate as "regimes of truth" (with the legitimacy of the gatekeepers' power determined by the very same criteria of expertise that determine who gets to wield that power), the school system also controls the definition of what it means to "fail". A student whose disability severely impacts his ability to hand in homework "normally", but who is bright enough to pass standardized exit tests, will probably manage to squeak by and pass most of his required courses. And that student's parents, who fear, with every fiber of their being, that their child's eventual high school diploma will guarantee him virtually no viable future after they are dead, may plead and plead that the "failure" is taking place right now, but since their expertise as parents is structurally positioned at the bottom of the chain of decision-makers, their concerns and ideas have no effect on comprehensive, long-rang policy decisions. Instead, such parents are "cooled out" by district-level administrators who listen but who are "tone-deaf" to hear, and worn down by the sheer number of steps required to secure the genuinely appropriate, system-wide (rather than haphazard and piecemeal) set of accommodations that would make all the difference for their child.

This is not what the law either intends or even permits. Section 504 as well as IEP law both provide ample legal grounds for the creation of truly individualized educational programs for students with disabilities, but if the disability in question happens to be one that is not familiar to school staff and administrators, and/or if the parents request accommodations that have never been heard of let alone tried before, the chances are almost certain that the only accommodations the child in question will have received by the time he or she exits the supposedly "free, appropriate public education" system will have been a patchwork of cobbled-together partial adjustments that have had to be hammered out anew every September, with each new year's slate of teachers taking at least three months to even begin to realize the extent of the disability's impact on educational performance. And when the vast majority of these teachers are indeed caring, capable educators, who often would help provide more appropriate accommodations -- if they had proper support from higher up the chain of command -- the waste of potential here is even more tragic.

A sadly perfect illustration of this tragedy (insightful planning, worthy intentions, and hard work never finding their mark) is the contrast between the wonderfully well-done IEP and 504-related material posted on the OSPI website -- in particular, the 67-page online brochure entitled "Ladders to Success: A Student's Guide to School After High School" (This is an Acrobat Reader file and it normally takes a long time to load.) -- and the shocking lack of mention if not awareness on the part of high school educational and administrative staff that this document (and more important, the impulse behind it) even exists. "Transition services" for special-needs high school students may be promised by law and described in hope-affirming words in official documents, but "in the trenches" no one seems to know much about this phrase, let alone how to implement it appropriately, when the student in question is not "seriously" or "obviously": disabled. Perhaps some gatekeepers to these kinds of services believe that preparing "these kinds" of special-needs students for a college and post-college career is an exercise in delusional thinking, but personal biographical stories shared in online support groups by bright, articulate adult "survivors" who have precisely these kinds of disabilities (invisible conditions that resulted in their being judged "incompetent"" and "lazy" themselves throughout their early school years) reveal the possibility of far more hopeful post-high school outcomes.

What would it take for these "hopeful outcomes" to become more of a reality? How could the pain and waste that is currently so operative in the lives of students with little-known, invisible disabilities be ameliorated?

Three related suggestions come immediately to mind:

1. All teachers and administrators (rather than only special-education experts) need more adequate training for dealing with the special needs of students with disabilities who are increasingly populating regular education classes. Clearly it is not possible for all teachers to be instructed in advance concerning all possible disabilities, but there needs to be a system-wide network of support for school personnel, beginning with an efficient, administratively-sanctioned "delivery system" of information, custom-tailored to address the particular strengths and weaknesses of each individual student identified as having special needs. Many parents try mightily to educate their child's teachers by filling their school mailboxes with relevant information gleaned from excellent, up-to-date Internet websites devoted to the disability in question, but with no legitimization given to this material "from the top of the bureaucracy", overworked teachers are likely to merely file these pages away for "future" reference. Another key role for this administratively-sanctioned "information delivery system" could also be that of working to close the knowledge gaps that exist between those (typically, parents and advocates) who know what education law intends and promises, and those (typically, school personnel) who may actually be less knowledgeable in this respect, but who still control access to services.
   
    
2. Distinct from the special-education department in each school, and integrated within the entire complex of school programs, facilities, buildings, and personnel, there should be a permanent, daily, clearly recognized person, place and position (perhaps filled by social workers) to serve as an immediately-available resource for students whose special needs are likely to involve them in social misunderstandings and conflicts with others in the school. Such a person would be trained to serve as the student's advocate vis-à-vis teachers and students who do not understand the effect of the student's disability, and the room itself would serve as a "safe haven" for, among other things, the student's self-initiated removal from potentially explosive situations. "Parting out" such services ("If you're in a crisis situation on a Tuesday morning, go to the guidance counselor; if she's busy, wait for the assistant principal or make an appointment to see the school psychologist next week") engenders a feeling of wandering hopelessness for the student, which can quickly cancel out any previously-made gains in self-reliance and trust in others.

    

3. Legitimate recognition should be given to the hard-won expertise of parents regarding the complexities of their special-needs child. Of course professionally trained teachers and administrators have vastly more collective and pedagogical experience with thousands of students "who are not like this one", but the parents of a special-needs child have infinitely more experiential wisdom about what is likely to "work" or "cause more problems" with precisely "this one". While special education law is very clear about the crucial importance of incorporating parental input into such students' educational plans, the social and political realities of the status contestations and insecurities displayed at parent-teacher meetings greatly compromise the good intent of the law. What is important to recognize in the end, however, is that regardless if the parent is a suit-clad professional or a single mother who comes trembling to school meetings wearing sweat pants and an attitude, she, more than anyone else in that meeting room, is most likely to be locked on to the most important target of all underlying her child's education: providing the best possible answer to the question "What will happen to him when I'm no longer here?"

All other educational goals and objectives pale in comparison to the need to address and continually keep in mind this absolutely fundamental priority. For parents of children with disabilities, it is this question more than any other, which motivates them to keep persisting, through all the inevitable as well as sadly unnecessary pain and waste of potential, to fight for a better future.