My Desperate Yet Demoralizing Plight to Get My Son a Diagnosis for Christmas

Sera Davidow
24
153

All I wanted for Christmas this year was a diagnosis for my son.

My son has been struggling in school for over two years now. (Truth be told, he’s been struggling for far longer than that, but it was less visible before he moved to middle school and grades became a ‘real thing’.)

In October of 2013, I wrote a blog on the Foundation for Excellence website (‘The Story of My Perfectly Wonderful Children and the Change WE Need to Make in the World to Save Them’) shortly after finding out that my son’s guidance counselor suggested he (then 10) consider ‘distraction meds’ to aid in his school performance. (How cute and euphemistic-like was her phrasing! Just perfect for his child’s ears!)

This is something for which I’ve never forgiven her, and not just because it’s terrible (or unlawful). I’ve never forgiven this young, unflaggingly perky and smile-full woman (who is so clearly well-intentioned) because I still think she only understands that it’s wrong to suggest ‘distraction meds’ to a student primarily because the school administration told her not to do it again or because it’s ‘against the rules.’ I see no evidence that she has any comprehension whatsoever of how damaging the drugs themselves are or why she should be questioning that approach at a much, much deeper level. Although, even at the time, she made a naively baffled-sounding remark to my husband about just how many children in the school were already stumbling down the pill-laden ADHD path, there was absolutely no suggestion that she thought it at all odd that so many kids should need to be drugged to survive ‘education’. Giving her a copy of ‘Anatomy of an Epidemic’ didn’t help. (I don’t think she read it at all, although she claims to have ‘flipped through.’)

That was also the same year when I started developing my ‘angry parent letter’ chops in earnest. And, oh, have I sent some good ones. One of my personal favorites followed a note from the school stating that my son would need to serve detention for one too many late arrivals (usually just by a couple of minutes at a time, and always his parents’ fault). To that one, I replied that if my son’s tardiness was not excused, I’d send his father to serve detention in his place, and only after he’d watched the ‘Breakfast Club’ a few dozen more times.

This year, I had a particularly sharp discourse with the school superintendent (the mere mention of his name is now enough to make me want to scrawl angry graffiti about him on some bathroom wall somewhere) that concluded with my sending the following:for a good time call 2

“Having never seen your job description, perhaps the main responsibility listed truly is just to make poor and capricious judgments about school closures over the winter. What do I know? At least we’re coming up on the season where you’ll have something to keep you busy. Terribly sorry to have bothered you.”

Yes, I am that parent I hear those teachers bitching about in the locker room after early-morning spin classes at the gym. I am not ‘well-behaved’ when it comes to this arena (or many others), and I have no plans on changing. I am well aware that some will warn against such an antagonistic approach toward a system that essentially has my child under its thumb, but I’m afraid I haven’t seen much else work. Diplomacy is neither my forte nor my focus when it comes to my children, and I do believe that the school system is supposed to be working for us, not the other way around.

But, here’s the thing: While I’ve had some success at keeping my son out of detentions for absurd reasons, or getting the school to apologize when they’ve done something flatly illegal, I still can’t get them to support my kid in the way that he actually needs to flourish.

My kid is constantly teetering on the edge of failing, and each year we sink a little further down into the scholastic abyss. The small shreds of ‘extra help’ he has been afforded have been hard won, and some of my most simple requests (like regular communication from his teachers) have consistently been refused. Eventually, I learned what so many other parents have also come to know: The public school system is designed to avoid creativity and flexibility… unless your child has a label.

Physical. Cognitive. Emotional. Doesn’t matter. A label, is a label, is a label, and I finally had to come to terms with the fact that if I wanted the school to be creative with my kid, I was going to need to get him one of those labels posthaste. Preferably by Christmas.

So, I wrote the principal and asked that my son be evaluated. Enter cognitive dissonance like you wouldn’t believe. I had to wrap my head around wanting for my son to have the very thing from which I am fighting to free so many others. I had to get comfortable with the idea that the same kinds of labels that I have seen lead people into systems that (quite literally) kill them, might be just the sorts of labels that would help my son survive in this one. In a country where two thirds of kids with labels become adults with labels and the drugs that are supposed to help regularly seem to make things worse, could I find the right kink in the pipeline so as to be sure he would emerge in the land of healthy and successful adulthood?

Most people enter with that hope, but the outcomes are increasingly dismal and the brush through which one must dig to separate out the problems in one’s self verses problems in one’s environment only becomes more mired over time. Would the fact that I was entering with my eyes wide open to all the truths and risks mean we’d have a better shot at navigating our way back out? I’m not so sure.

The next thing I knew, the process was rolling, and I found myself with a lengthy parent questionnaire in my hands. That was a real moment of truth. (One of several to come.) Was I going to document some of the scarier moments we’ve had with our child? Were we going to disclose our own histories of diagnosis and various other bits of personal information on formal school paperwork? Because, of course, the questionnaire asked us to do all of that. And the answer was… no.

No. No! I couldn’t do it. My efforts at evaluation were too half-hearted, too filled with misgivings. The sea of cognitive dissonance was too vast. I’m fairly confident we could have earned my kid a psychiatric diagnosis if we’d used all the tools at our disposal to their very best effect, but I couldn’t do it. The potential cost was too great.

So, I just had to hope that they’d find something else ‘wrong’ during all that other testing, that would justify getting him his very own ‘Individualized Education Plan’ (A.K.A an ‘IEP’ or ‘Golden Ticket to Requisite Creativity’). And, right before Christmas, we met to hear the results. They didn’t find anything.

He scored ‘superior’ in various aspects of English and Math (the two subjects he’s most often failing), and he only struggled a tad more when tasks were timed. He was fine, and (in most instances) more than fine. That left us empty handed. No answers. No legal pressure forcing the school listen to me or do things any differently. He would not have his diagnosis for Christmas, after all.

Fortunately, the process introduced us to some school employees who we had not previously met, and who had some suggestions we had not previously heard (in going on three years of arguing), and who seemed to feel at least a little bit less bound by the school’s rigid ways of being. I’m pinning all my hopes there, for now.

In the meantime, though, I’m struck by how similar these systems all are to one another,  and how much of game it is to navigate one’s way through without simply ending up in the fastlane to yet another terrible system just like it.

The testing didn’t come up with anything ‘wrong’ with my child, because there is nothing ‘wrong’ with my child, and yet the testing is still hopelessly inadequate. Because there is something wrong with the system.

Where is the test that tests for how the system is ‘wrong’ for my child?

This system (much like the mental health system) starts from so many wrong assumptions. There are more wrong assumptions than I can even begin to enumerate, and my count begins with my own childhood experience (as it, in so many ways, mirrors my son’s).

Examples abound of emphasis pushed in all the wrong places, but let’s start with a simple one: My handwriting. Much like my son’s, my handwriting is terrible, but its terribleness is meaningless… or, at least, not meaningful in the way that my own grade school tried to make it out to be.

Consider this: My grade school would have had me believe that my bad handwriting was a serious ‘problem’ that needed to be addressed head on for fear of its potential interference in my ability to communicate. Yet, while I do indeed have the worst handwriting of any adult I know, I’m also the best typist (by far). I don’t have to look at the keys when I type, or even the monitor. (In fact, if you were here right now, I could type out this sentence while also talking to and looking right at you.) I can only write neat little letters, when I switch channels in my brain and think of it as drawing. But, at that point I begin to lose the beauty of the word for the beauty of the letter, and I just don’t much see the point in that (unless I’m actually drawing, which I also like to do).

Although I hate (hate, hate) writing by hand, I love to read and I always have. I read Gone with the Wind in one weekend when I was in Junior High. (Though, that was more to prove a point. I’d much rather be reading Stephen King or Kurt Vonnegut if left to my own devices.) I also consider myself to be a more-than-competent writer (as in articulator of ideas and not penmanship). In fact, my career is largely based on it (regularly authoring grants, blogs, training materials, and so on). And, when I get up to speak in front of large audiences, I do not need to read from notes to get my message across, and it’s rare that I stumble too much over my own words.

My handwriting will never be good, and those remedial handwriting classes I was forced into as a young kid (for no other reason than I didn’t fit with what was supposed to be) were a waste of everyone’s time. Yet, just like in the mental health system, not a single person ever asked me what I thought of any of it, what was important to me about it, or how it was actually impacting my life.

Another simple example: School systems tend to operate on the assumption that making up sentences is a good way to practice new vocabulary. Maybe for some kids. For me, it was torturous, and if I turned the assignment in at all, it usually just meant I’d sat at the kitchen table harassing my mother until she did it for me. (Which meant a whole set of other things, too, for my home life, given how tortured our relationship was at that point .)

Although I was an avid reader and a budding writer who liked to compose creative stories in my own time and for my own consumption, I literally froze up when faced with this particular task. In retrospect, I think it was because of my social fears and panic about having to expose something more personal than simple, factual regurgitation at a point in my life when I was still very much trying to figure out how to be confident in letting the world truly ‘see me’ in any real sort of way. Whatever the reason, this task was beyond ineffective for my learning, and no kind of predictor at all of my ability to understand new words. (Like my son, I have always tended to score very high when it comes to testing of that sort of thing.)

But, of course, the worst assumption of all is that most people believe that success in school is a clear predictor of success in life. It’s its own sort of mass delusion, sold to us because, well, it just has to be true, right? Because, we’ve designed our whole culture around it, you know? Just like hearing voices is always bad, psychiatric medications are the ‘right way to go’, and thoughts of killing one’s self are never normal. Or that the massive racial divides that exist are the result of something other than failings in the way our society is set up (or who its set up to benefit).

In truth, with so much emphasis on compliance, schools (again, not unlike the mental health system) are often grading based on following rules or fitting norms as much or more than comprehension or critical application. And, while ‘compliance’ can have its own merit as a survival skill or sorts, its of a very different nature than pure knowledge or skill.

At a school meeting I attended last week, one of the teachers noted that my son would be in geometry next year. He further stated that, at that point, it would be even harder for my son to skate through if he wasn’t keeping up, because the concepts of geometry just require that level of attention. Interestingly, I took geometry when I was in 10th grade, and that also happened to be the year I mostly stopped going to class. I just couldn’t quite make myself get there. And I had a hell of a time getting my homework done, too. But I’d show up to the tests, and I guess I was looking at the book just enough that I was often able to figure out what I needed to figure out on the test. I wasn’t doing well, but I wasn’t failing either. And, if I’m honest, I had to exercise my brain far more to survive that particular method than had I chosen the more ‘compliant’ path of rote memorization of formulas and so on.

But, in my case, getting to class only kept getting harder in the years that followed, and my ways of coping eventually failed me. Yet, strangely enough, I survived and I’ve never had trouble showing up for work. (Well, aside from some youthful periods of indiscretion in my mid-teens.) In fact, if we did a yearbook ‘most likely to’ exercise at my current workplace, I’d undoubtedly earn the title of ‘most likely to show up’. No matter what.

So, I didn’t get that diagnosis for my son for Christmas. And, in reality, I never wanted it. What I want far more is for this school system – like the mental health system we spend so much time talking about here – to understand that the range of ‘normal’ is much broader than our systems are designed to accept. I want this system to understand that my son’s struggles do not need to mean there’s anything at all wrong with him, but simply that his way of being in the world isn’t as easy of a match with the way this system is set up as it may be for some of the other kids.

More than anything, I want all the people in this system to hear that – if my son fails to grow into a successful adult – it will much more likely be the result of all this system’s attempts to force him into a singular mold and the demoralization that results from being blamed for a lack of good fit then it will be because of some inadequacy within him alone. This force fitting does not serve my child, and in the end, all but those at the very top of our cultural pyramid lose out from such an approach.

Our most frustratingly restless and rambunctious students sometimes become our best athletes or inventors.

Our most disruptive ‘class clowns’ sometimes grow into our most valued entertainers.

Our most seemingly withdrawn ‘loners’ sometimes evolve into our most thoughtful leaders.

Or any other number of decent, caring human beings taking on roles that add something to this world in some way that perhaps we never could have envisioned when we saw them trying to figure out who they were in a one-size-fits-all system of errors. (But how many of them have we missed out on meeting in their fully realized form because we drugged, diagnosed, and/or dismissed their potential away?)

If I could sit every member of this school system down right now and ask them all my most burning questions, they would be: Do you want to be a tool of the system? The one who knows all the rules and holds all the lines? That says ‘no, we can’t do that’, just because that’s the way it is? Or do you want to be a guide through all that mess?

Never mind the kids who ‘fit’ naturally with the way things are designed. They’ll likely get through, whether you’re there or not. But, without you, who will help that one who’s slipping through the cracks to learn how to get around the rules and still survive? Who will help him grow what he’s good at, when everyone else is focusing on what he’s not? Who will withstand your colleague’s ribbing when you take an approach that makes no obvious sense to anyone else, just because it makes all the sense in the world for that one kid? Who will help him see where he fits in and what role he can play (and how that role is just as essential as all the rest)? Who will take the time to ask that kid why and what it all means, when others are just giving him what for?

And who do you turn to for support when you realize you are also being force fitted into doing your job in ways you’d never imagined?

And why did you choose this career path in the first place?

Do you still remember?

Maybe you should take a little time to reminisce.

24 COMMENTS

  1. Sera,

    My heart goes out to you. Your experience with your son sounds a bit like my experience with my youngest son. He found that meditation really helped him with a school system (and world) that valued test results and did not usually, as we would hope, appreciate and nourish his gifts. He did not ‘fit in’ easily in middle school or most of high school. This was not an overnight success, but has really been helpful over the years. He is now in his first year of college and doing well.

    Best Wishes

  2. I love this because I was “one of those parents”. Until I had enough. Pill, pills, pills and diagnosis jumping and none of it helped. It did teach me so much about my kids, the system and myself.

    It’s not our kids. It’s the system. When will enough people figure that out to make a change?

    Bling obedience exacts a high price.

  3. My freind is a teacher. She is ground down by all the petty rules and constant monitoring she gets from senior staff. She is allowed almost no inititive in setting the work programme for her classes or in the way she marks work. She has to write reports on these children, who are five years old, in a style deemed fit by the head and then has the reports marked by the head before they are sent out to the parents.

    The children are bored, frustrated and angry.

    This is systemic and effects teachers as well as pupils. A huge percentage of UK teachers want to leave. A large percentage of new teachers do not stay in the job very long. A lot have time off sick with stress (I guess a lot of them turn to psychiatric pills – just like the children are forced to do).

    Education was never brill but for the last twenty years it has progressivley become more of a controlled system as more and more business tools have come in and as more and more schools are given over to private ownership – though they are paid out of public money. In the UK these are called Acadamies, in the USA I understand they are called Charter Schools. No matter what the status of the school (run by the local authority, by an acadamy chian or a Charter School) the ethos is ever more about testing, teaching to the test, rote learning, doing as you are told, league tables for schools – control, control, control that turns education into a sausage factory to produce complaint people who will not rock the boat in Macjobs and call centres.

    Recently I went to a play about the Great Chicago Teachers Strike. I do not know if the sort of issues you are writing about was important to the struggle there but I hope so.

    http://www.motherjones.com/politics/2012/09/teachers-strike-chicago-explained

      • John and Sera: I responded to Richard’s article written a few days ago regarding whistle blowing. I think my response to Richard indicates that I am in a position to better draw the community I live in into a discussion regarding the issues of our education and mental health systems which you touch on here.

        • I think the common theme here is probably Neo-Liberalism which is a political philosophy that was frist put in place under Thatcher and Reagon: privitise, small state, low taxes.

          This generally leads to a degrading of public services and a business ethic of control and managerialism entering public institutions. School is more regimented, claiming benefits becomes harder and you have to jump through more hoops to get it, people purchase packages of care or treatment and Dr’s and social service providers have less flexibility in what they provide to sick and distressed people.

          The accountants have more power as the profit motive is king.

          Ultimately this lead to the banking crash of 2008. Fortunately people are fighting back.

          I think this might give us some idea of who our allies are in fighting the excessess of drug company fuelled psychiatry.

          On this site the libertarians often object to this point of view. I do not wish to argue with them and instead point to the rise of Bernie Sanders .

  4. I agree, the schools really have gone tremendously downhill, and they restrict creativity big time, including play time. My approach to this problem was to co-chair a parent run Creative Arts program at my children’s elementary school. Which brought art and creativity to all the kids in my children’s school, most the kids loved it, as did our 250+ parent volunteers. Creative endeavors are fun for people of all ages, and a wonderful way to build self-esteem in children. Plus the teachers are more accommodating to the children of active volunteers in the school.

    Although I must confess, I did opt to send my children to private school by high school, which is another alternative for a child who does not fit into the cookie cutter, that our public school system has turned into.

    Best of luck with your son, I’m glad you didn’t have him labeled. And it’s good his mother knows the problem is ‘the system,’ not him. Make sure he knows that, too. And I can tell you love him, and love is a wonderful foundation for a life, so I’m sure he’ll be fine in the long run.

  5. Sera

    What you talk about here is the reason that I left teaching and became a hospital chaplain. After fifteen years in the classroom I realized that it was all about compliance and nothing about teaching kids how to think on their own. The educational system in this country does not want students to learn how to think for themselves. It does not encourage kids to be unique or to capitalize on their gifts and talents. It wants everyone to be regimented and to march in lock step.

    I was fired from the last high school I taught at because I spoke out for and supported a group of four students who started an “underground” newspaper in the school. They didn’t attack teachers or administrators or do anything that was destructive. They encouraged creativity and free thinking. Well, the administration went absolutely bonkers and started an investigation to find the culprits who were responsible for this horrible act. It was a Catholic school run by an order of brothers. The principal sent brothers out within a two mile radius of the school to all the printing companies to see if they could discover who the four students were. The end result was that the four students were eventually found and although they weren’t expelled they were stigmatized severely. I was called in and told that I would not be offered a new contract for the new teaching year because I “did not fit in with the philosophy” of the school. You can’t get more regimented and compliance oriented than a “religious” school where students are forced to wear uniforms, in this particular school it was all male and the uniforms were military. These students could get detention for wearing a denim jacket within two blocks of the school! And the teachers who taught for real learning didn’t stay very long because they “didn’t fit in with the philosophy” of the school.

    Thank goodness your son has you for his mother and that you’re willing to walk with him through all the stupidity that the system puts him through.

  6. Hi, Sera–
    I am so sorry to hear about the struggle you and your son are going through. Years ago I remember reading a book that explained the difference between “teaching children” and “delivering the curriculum”, a distinction that few people seem to understand. For whatever reasons, your child–like so many–is not so good at receiving the curriculum or parts of it. The system responds, not by examining the need to adjust the curriculum, but by adjusting the child. While there are certainly teachers and administrators who are capable of focusing on teaching the child, there are not enough. Not what they are educated to do. While my children certainly experienced this while in school, it was not very damaging. And on the positive side, there was the benefit of acquiring a healthy skepticism of authority.
    You appropriately draw parallels between the way the schools respond and the public mental health system. The latter system in my view suffers from the same malady. Its practitioners too often lose sight of the fact that they are supposed to be “helping people”, rather than delivering “treatment”, whether based upon received wisdom or evidence. That’s what we tend to do when confronted with problems that we don’t know how to address.
    Sadly this problem exists in all of our human services systems. If you have the misfortune to become a recipient of almost any of these services, you misfortune may be doubled by this contact. Sorry to “support” what you are offering with such a pessimistic response.
    I hope that your efforts on behalf of your son are rewarded. I wish you a happy new year.
    John

  7. Being someone who was diagnosed with “disorders” which I no longer believe in, someone who was discouraged in high school to take no higher than what equates to 6th/7th grade math, and someone who quit teaching math at the high school level because he was absolutely disgusted with how protective most schools are of the status quo and looking pretty, I hope I can offer just a bit of help. Notice, I said I was a math teacher….so having graduated high school with no higher than 6th grade math, I went on to get a degree in the area, and I think part of the reason why was I was never discouraged by the system…..I started getting fascinated with the subject on my own. I hope, this might help a little at least with one subject that many consider very intimidating/bland, but that doesn’t have to be at all.
    I feel your pain. I wish I could go into everything, but here are some things that might help? For one, there are some great resources on the web today for any topic. Maybe if you have time to talk to teachers and reach around, there might be alternative resources out there for any subject. If you can ask the more creative teachers at the school, I would think they might have something….and then going to sites like similarsitesearch.com can help you finding more of those kind of educational sites. I wish there were a way to get in contact, because I would be happy to help you further. I am currently designing a video game/application series designed for kids to learn math and present it in new formats. I plan on tutoring and referring to a site once I get far enough along. If there is any way to get in touch, I would be happy to help more, because it is people like yourself that change things…..I am sorry you have to go through this, and I feel for your son too. I was rambunctious, but was never dumb…..the system seemed to want to convince me I could get by with low standards if I never challenged anything (that is because the system doesn’t like challenges). I never fit the system as a student, nor a teacher….however….the class I had the most interaction with at my high school…..I found out a few years later had more scholarship offers than any class in the history of the school. One student told the school when asked who his favorite teacher was, that I was it because I made learning math fun. The system doesn’t want that…..I only mention this because I know of a number of techniques really aimed at students that don’t traditionally do well, and would love to share if there is an arena.

    • Sorry, after reading, I realized I didn’t really offer quite as much as I would have liked to in order to give an idea of what might help? A few activities tried:
      Teaching kids functions by playing battleship on a number-line (kids get to pick numbers, and each “team” gets to try to blow up someone else on the number-line by picking an input and trying to get their output)
      Having kids draw art or their favorite logo with various curves/equation lines on a graph
      Having students play a territorial game with inequalities on a graph….
      Having students “booo” me when I purposely made a mistake so they would catch those.

      Sorry, to make this about one subject too much, but I am sure this can be done with other subjects too. I just wanted to give something maybe fruitful that could be done?…..Even if it is just a small part of the idea.

  8. School is a common trauma that many of us share from our own childhoods. The very idea of a standard school is triggering for me!

    I am fortunate to live in Portland, OR, where we have some alternatives built into the public school system. Notwithstanding these less oppressive options, we still opted to homeschool our oldest for four years, helped develop a child-centered alternative school within the system, and ultimately helped create a charter school that allowed kids some power to be who they are and study what they were interested in at the level they were capable of, and even have some recourse if teachers decided to behave badly. It has been a rousing success (the school is in its 20th year of existence!) but more importantly, it allowed my youngest, who would have been considered highly distractible and disruptive in a standard classroom, to develop at his own rate and in his own unique way. He’s now in college and doing great. I have to wonder how many other “square peg” kids would thrive if they were just allowed to be in an environment which adapted to their needs instead of expecting them to adapt to the adults’ version of reality.

    I hope you find your way for your son, and I wish and hope there are some alternatives you can take advantage of.

    Hey, isn’t the Sudbury Valley school right in your neighborhood?

    —– Steve

  9. An IEP wouldn’t help. I had one. I use a wheelchair and I have always had the fine motor skills of a 2 year old from cerebral palsy. My teachers just gave excuses on why they couldn’t follow my IEP. Rest assured, it wouldn’t help anyway. Maybe tutoring would help. When my sister was 6 years old, she went from the lowest reading group to the highest group the next year with private tutoring over the summer. There’s always the option to get a GED too. Or online schooling.