I was recently reminded that although I have told this story to friends, in three weeks I’m going to encounter a lot of people (at the Congress) who haven’t heard it, and there will be those who ask about the tattoo on my wrist.
And after reflection I decided to post the story here, too, since I’ve used this platform for other parenting discussions. And also since I don’t want to repeat this, all or in part, multiple times.
Twenty years ago last month (on 3/16) I attended a Jesus and Mary Chain concert in Detroit; opening for them was Nine Inch Nails – I came in mid-set. I was 19 and burning out in art school and it was a fucked-up evening fucked-up by interpersonal fuckwittery—suffice to day, one I would have been happy to forget (and looking back, it was probably the opening death knell of an engagement that was through less than a year later). Except not quite… I came in, slunk against the wall and cold and pissed and looking like something the cat dragged in (with freckles) …and I was transfixed.
It seemed like a good date to get this, my first tattoo.
16 March 2010, immediately after tattoo was finished. (Pardon the lousy cellphone photo.)
The line is taken from a NIN song, but this isn’t about NIN nor about Trent Reznor (not really):
Lights in the Sky
She’s mostly gone
some other place.
I’m getting by
in other ways.
Everything they whispered in our ears
is coming true.
Try to justify the things
I used to do.
Believe in you.
Watching you drown.
I follow you down.
I am here,
right beside you.
The lights in the sky
I am staying,
right beside you.
I tried to stay away,
just in case.
I’ve come to realize
we all have our place.
Time, time has a way you know,
to make it clear.
I have my role in this.
I can’t disappear,
or leave you here.
Watching you drown,
I’ll follow you down.
And I am here right beside you.
The lights in the sky
are waving goodbye.
I am staying right beside you.
Listen… it’s a quiet one, just piano:
There are a lot of NIN songs, through the years, that have resonated with me for one reason or another. Some still do, and others simply remind me of the time they did (and which I am happy not to be living, anymore).
When I first heard this one I sobbed. Still do, actually.
To understand why I need to tell you a story.
You see, I was a first-gen university student. There was the weight of expectations and the weight of culture-shock and the weight of a total lack of understanding by my parents of this different planet, this academia. I had Responsibility to Do The Right Thing and Make Them Proud (even in the face of being, personally, a pretty odd damn duck). I started in art but switched to humanities double majors/ double minors, got my BA, I stayed for an interdisciplinary MA… I had plans, potential… I gave conference papers, I worked hard (I worked through both degrees, at one point simultaneously half-time university staff, student, and teaching as a grad assistant). I applied for Ph.D. programs; I was accepted into my top choice. But. But it was without the funding needed to move a family out of state. I had money… enough to move just me. But. But I had two children, one of whose impairments we were just beginning to plumb the depths of. And I had a clear choice, one I had to make that I considered one that I could not un-make and I’d better fucking get it right the first time.
Work to reach my full potential, or sacrifice my dreams so Em could have any chance at reaching hers.
Let everyone down—my family, advisers, friends still in the field… even and especially myself—or let her down. All or one.
Watching you drown. I follow you down.
I am here, right beside you.
My choice was for the one.
Time, time has a way you know, to make it clear.
I have my role in this. I can’t disappear, or leave you here.
And as we’ve learned more and she’s worsened in so many ways and the way before us is clearer (but with information comes a lack of room for hope, sometimes) I remind myself that I made a decision. A choice. What happened to her chromosome might have been random, but nothing I could—can—do can be. I was not tricked, I was not trapped, I do not sit around feeling sorry for myself (although I deeply wish she didn’t have these challenges and limitations, and I certainly have days that make me wonder if I have the strength and emotional wherewithal to do this), I made a choice.
I chose her.
And now in addition to that imprint on my heart and mind, it’s on my skin as well.
Certainly there are other layers of meaning for this line I now have on my wrist… in my marriage there has been some very bad, very trying times—times that are past and that we are stronger for having survived. I have another child who struggles for a sense of normalcy in the face of instability, a shortage of ‘normal’. We all have our place.
And yeah, there is this band (this guy who is this band), whose music lent me sanity when I needed it, was the screaming I couldn’t vocalize, was hope (yes, I said hope) that is only possible after recognizing Things Are Very Wrong and, once recognized, opens a way. Who makes me cry, in whose instrumentals I find peace (in the inner landscapes they invoke), whose own journey was so clearly and painfully mapped from album to album (not the same road I was on, but the two sure ran parallel a lot of the time)… and so when I needed out of the bad places I had built inside myself to convince me of my own lack of worth there was a song, a line, a chord to lead the way, shine a light, kick me in the ass. I am loyal, long-term, to very, very few things… so when I realized that very nearly all of my adult life has had this one—one—constant I had to honor that.
And that is my tattoo.
Maybe for my birthday (40!) I’ll do the other wrist – for balance.
Four years ago I was asked to join seven other bloggers–parents of kids with a variety of disabilities–to blog in an organized fashion on their behalf. Educate. Advocate. Each year since I’ve continued the practice, albeit solo. This year I’ve been joined, again, by a coordinated group (a list to which I will be adding their URLs as they post):
(eta: this is an excellent comment)
Parenting children with disabilities is challenging on a number of levels. In the case of my family, the disabilities are (initially) invisible–mental, emotional–but no less present. I addressed some of those challenges (and the specifics of our situation) last year.
This year I want to introduce you to one of our challenges that you might not initially consider an issue: in addition to our daughter we also have a son. He is neurotypical.
Time did a piece on this awhile back (Autistic Kids: the Sibling Problem) and although Emma is PDD-NOS (atypical Autism) with other issues, the article does cover some of what we have seen.
But not everything.
Colin is a very, very bright seven-year-old. He reads everything he can get his hands on, manages video game strategy better than many adults, and picks up vocabulary like a sponge. He’s also immature for his age, not well socialized with his peers, and has anger-management issues that clearly result from the situation at home. Immaturity isn’t unusual in boys his age—although in many ways he is more mature than his sister, so it’s difficult to know where normal range ends and modeling his sibling’s behavior begins. A tendency to be awkward socially comes naturally, whether he takes after his father or I—neither of us were social butterflies. But how quick he is to anger, how what seems like a normal level of frustration will send him off-kilter, is a side effect of his environment.
It’s not easy living with Emma.
It’s not easy when you’re an adult who understands the context of her behavior and has maturity and experience to draw from when dealing with some of her most extreme outbursts. For a child it must be like living in constantly-shifting reality where the rules and outcomes are never expressed and randomly enforced… where expectations for him and for his sister need to be tailored to the child and the situation, even if we do actively try to maintain some semblance of consistency. He is as constantly under stress as his father and I, but he doesn’t have the skills to cope with it. Even so, he does his best.
As do we.
When he was an infant I had her help me as much as possible, to offer her opportunities for bonding (she loves babies, whether dolls or real). As he got older (and independent!) their relationship began changing. She runs hot and cold, and her random moods and reactions were often directed at him. She tends towards verbal and physical outbursts when her meds aren’t in her system, so the early mornings and day’s ends were particularly traumatic. And it’s only gotten worse as he’s modeled her behavior back to her and as he’s achieved levels of skill that she can’t reach, herself. Despite our breaking up countless arguments/battles, no amount of talking to her changes her behavior, and no amount of talking to him can truly make him understand that Emma going from I love you to I hate you in a matter of five minutes without any outward provocation is just Emma and not him. It’s anxiety-inducing to live with a time-bomb, and it’s depressing to be constantly belittled, insulted, and harassed (I know, because I’m a main target for her abuse, too).
So now we attempt to keep them separated.
I wake him in the morning after Em has left the house for the bus, so he doesn’t have to deal with the shrieking harpy she is when she first wakes up. When they were both in elementary school and riding the same bus, this was impossible… and it resulted in a lot of calls home last year, because starting the day off with verbal abuse and (no other way to describe it) crazy directed at you set him up for a very bad day at school.
She now takes the bus home instead of to the sitter’s house, so he doesn’t have her random moods interrupting his quiet homework time. In the evening we encourage him to engage in activities that don’t involve them playing together (since that just results in screaming arguments), like reading or playing strategy games on the computer. We spend money on devices and computers so they can entertain themselves without actions and reactions resulting in more hurt feelings and rages. We give him constant positive feedback on the areas that most vex him, we take his interests into account and try to give him as normal (what is normal, anyway?) and fulfilling and fun and educational a childhood as possible. We hope for balance. We take one or the other with us on errands so they can have alone time with both parents—so we can run the errands in something approaching peace—and I’ve taken them, individually, to visit my parents.
It’s not ideal.
But it’s never been, and it never will be: It’s our life, we do our best.
And that’s now.
Tomorrow, many tomorrows from now, my youngest child will be responsible for my oldest child. Because we do not know if she will ever live independently as an adult, nor how we’ll be defining ‘independent’. Because we won’t always be there… and yes, by that I do refer to my eventual death. So not only might my son have to help care for his father and I at the end of our lives, his sister’s welfare will become his responsibility. This will be a heavy conversation to have when he turns 18 or when he graduates from college… and when he thinks he’s found the one, whomever that is must, too, know what the future will hold.
But that’s not now.
Now is quite enough, to be frank.
And now mostly what I hear around my house is, “it’s not fair!”
No, it’s not.
And it never will be.
Four years ago I was asked to join seven other bloggers–parents of kids with a variety of disabilities–to blog in an organized fashion on their behalf.
Every year since then I’ve continued the practice, although solo.
This year I have decided to organize another parents Blog For Kids With Disabilities day (this time in October, due to a variety of unfortunate logistical kerfuffles) to spread awareness, offer advice or support for other parents, and to advocate.
The topic would be yours to decide upon (parenting, education, medical struggles – if you have stories that directly relate to the current health care reform debate that you’ve already related to your representatives, I have no doubt other parents and interested readers would like to hear them), we’d just coordinate the date of posting and include links to each others’ blogs.
I know former/potential bloggers who are concerned that they will not have a full-blown blog set up by that time, and I am happy to post your essays here, if logistics require–the more voices the better!
Please let me know if you’re interested in participating.
Planning for the blogger meet-up at the International Congress on Medieval Studies is under way. Don’t forget to pencil-in Session 546:
Weblogs and the Academy: The Scope of the Professional and Boundaries of the Personal in Open, Pseudo-Anonymous, and Anonymous Blogging
(Yes, that was shameless pimping.)
*More pimping: Peter over at medievalists.net has done a ton of work on the ‘Kalamazoo’ section, so go give him kudos. (even if he has plans to put me and a camera in the same room… I’m trying not to hold it against him)
*Reminder: all 240 glorious pages of The omg!uber!Program have been online since Feb. 1.
Sorry, other than the above I have nothing else academic-y to add. I have an IEP meeting to construct many varied and interesting weapons for — Momzilla has to stomp Tokyo again. (I really hope the new Prez will do something about No Administrator Left Behind, it’s screwed special ed thirteen ways from Sunday)
(An aside for thems that know me: If you plan/need to track my whereabouts at the conference drop me a line at the university email (elisabeth dot carnell at wmich dot edu) and I’ll add you to the google calendar so you can stalk me let me know when and where I’m drinking in the evenings! :P)
Go! Look! See!
I don’t think I have to describe in detail the explosion after the 1998 article in which Andrew Wakefield published research findings indicating a causational link between MMR (measles, mumps and rubella) vaccines for children causing autism.
It appears that Andrew Wakefield falsified results in his research. It’s not particularly surprising, since the UK’s General Medical Council had issued a notice of disciplinary proceedings against Andrew Wakefield after allegations of (other) serious professional misconduct.
I’ll stop here before I start ranting about falling innoculation rates and the effect on the general population, much less all of the emotional bullshit the parents of autistic children are put through because of his bogus ‘findings’.
Three years ago, seven other parents/bloggers and I banded together for a Blogging For Kids With Disabilities Day (my participation: part I, II, and III). Since then I’ve considered education (not only Emma’s, but everyone who encounters Emma, and anyone else who will listen) part of my job as a parent. Invisible disabilities are difficult to manage for both the parents and the child – but also for strangers, as these disabilities are lacking the social visual cues that allow people to avoid being assholes around kids in wheelchairs (should they so choose), for example. And the stigma of mental health disabilities, not to mention the preponderance of misconceptions, misinformation, and outright lies, means many who have diagnoses won’t get treatment and many who need diagnoses will be afraid to ask for evaluation. Adults and children alike. Many other adults who have their children evaluated, themselves discover their own personal histories beg for evaluation. A good friend of mine, a professor at a large east coast university, was diagnosed after his son had been – so much of his life made sense after that diagnosis.
This past week was ADHD Awareness Week. And so – I blog.
First: I don’t care what you “believe”. This is a medical diagnosis, not an effing religious principle. If you can’t manage to get your head around that then you might as well stop reading. Really. Stop now — nothing I say will stop you from giving these kids and their parents shitty looks, so save us all the trouble, ok?
Second: Last year I covered many popular myths about ADHD, and it might be a good place to start, if you’re still reading and don’t know much about ADHD or its history.
This year my post is a little different, but no less necessary.
My daughter, Emma, was born on December 26, 1996 — it was one of the happiest days of my life.
Emma has continued to bring happiness to my life, but it was also clear from a very young age that Emma was different from other children. The differences were subtle, however, and often dismissed by people who didn’t spend as much time around her as I did. Whatever deep-seated impulse leads parents to believe everything about their child is perfect, I discovered (in my case, at least), it is easily overpowered by the gut instinct that Something Is Not Right and the drive to get help, no matter how many mountains I had to shout from.
She displayed cognitive… oddities. Things that boggled me – in addition to exhibiting delayed speech skills (requiring special assistance, which I was able to eventually have tested for and arranged) she clearly had processing issues, for lack of a clearer description. I could see it on her face – she wasn’t following speech, at least not following it the way I could see other children following it. It was also clear to me her near-manic activity level was Not Normal. She was diagnosed with Attention Deficit and Hyperactivity Disorder half-way through kindergarten (I had talked to her teacher up front about my suspicions and asked for her professional feedback – once she said ‘yeah, you might want to get her looked at’, it was a go). The first time she saw a psychologist she spent the hour gathering toys and then methodically moving them from corner to corner in the psychologist’s office. En masse. Over and over and over. He showed me a chart, showed me the normal range on the chart. He took his pencil and pointed to the spot Emma had tested at (based on myself and the teacher answering literally hundreds of questions). The pencil point sat on the table about two inches from the edge of the chart.
I moved to begin treatment immediately – so much time, learning time, she’d already lost. I had to repeatedly request to get the school psychologist to meet with me, and I arranged for an IEP (indivualized educational plan). I eventually fought to have her repeat 1st grade because I didn’t think she had enough time with the foundational material to continue on to 2nd grade, and she surely would have been utterly lost from that point on. And I wasn’t going to allow that to happen.
Our first med was initially helpful for the hyperactivity, but not for the attention issues. Eventually it was clear that, in addition to its shortcomings in controlling the symptoms enough for her to do what she wanted and needed to do, it was adversely affecting her mood. She was growing more and more erratic and aggressive, flying into frequent rages (and she had been, other than her exquisite frustration when she just wanted to make it through an activity and couldn’t, a happy child). That was the beginning of near-daily doses of verbal abuse for me – I’m her main emotional support [so I’m safe – she knows I’ll not leave], I’m the setter of limits, so I’m her main target for frustration and ire). The problem with stimulant medication, however, is that it almost always results in weight loss – and our very little girl was already just at the 5th percentile on the growth chart – so she fell off, and we would struggle to get her to eat for many years. It’s scary having an underweight child – one bout of the flu would have us in the hospital having her re-hydrated via IV because there was simply no stores to draw from.
We tried a second, which was a vast improvement. It was, however, difficult to manage – she metabolizes medication at twice the normal speed. This means a 4-hour med lasts no longer than 2 hours. An 8-hour ‘all-day’ med lasts til lunch. It also means that fever control for her is an Olympic sport – I have to go back and forth between Tylenol and Advil. And I have to make sure the fever doesn’t start to go up or I have to switch from oral medication to a suppository – she projectile vomits when her fever spikes (while this is difficult and upsetting, I will express intense relief that I have been dealing with vomiting and not febrile seizures – they’re frightening). I spent many, many hours holding a weak, endlessly retching child on my chest, swaddled in cold, wet towels, trying to get her temp down enough to give her Tylenol in the hopes that it would stay down (and then doing it again when it wore off before I could safely give her more – it was an emergency room visit that got me information about Feverall suppositories, over-the-counter gems that they are).
So the number of mg per day she had to take, orally, was frightening. I have never happy-danced quite like I did the day Daytrana patches finally made it through clinical testing and hit the market: same stimulant as she had been taking, but absorbed through the skin so she couldn’t power through it.
Still, for all it did (handling most of the hyperactivity, and helping somewhat with the attention) it didn’t handle some other behavioral issues popping up and growing more troublesome, nor the other cognitive issues. Emma appears to have a very limited concept of self and theory of mind. Her ability to appropriately empathize and infer intentionality in others is extremely limited. Although she is friendly and chatty she also tends to irrationally single out certain individuals for enmity. Disruptions in her schedule are major — some of the worst times we have are when she has a substitute teacher. She obsesses and fixates on things like tornadoes and hurricanes and spiders and alternately worries about them and/or wishes she could see one.
On the recommendation of her pediatrician she was tested for Fragile X, but that was negative. After seeing a new pediatrician last fall, after her other passed away, we had comprehensive genetic testing (and a full battery of neuro-psychological testing) done. The neuro-psych testing got us another set of initials – PDD (pervasive developmental disorder) and confirmation that her IQ is not in normal range – but it’s also not as low as what had been termed ‘retarded’ and so we’re caught between functional and clearly disabled, not knowing what I can ask for and arrange for her). The results of the genetic testing were…well, they were the classic good news/bad news situation.
The good news was that I wasn’t nuts — Emma was diagnosed with partial trisomy of 16 p. As the letter from the geneticist put it, “Chromosome high definition of oligonucleotide array revealed a small duplication of chromosome 16p.” The CGH showed “gain of four clones at 16p13.3: RP11-243K18, RP11-334D3, RP11-358F6, CTD-2608C14.
The bad news is that CGH testing is very new, and Emma may be the first child ever diagnosed with this specific set of chromosome 16p duplications. As the geneticist put it, “Given the relatively new nature of this testing, we were unable to find reports of children with the same size duplication as Emma.” There are certainly other children with 16p duplications, but they tend to have much larger duplicated material and also tend to suffer much more pronounced physical and cognitive problems. So, she’s her own case study. And she can’t be ‘fixed’ – that’s always the hope, that whatever is wrong can be corrected. No. Never. And it’s likely the result of just a random mutation (not that this keeps me from continuing to blame myself, but sometimes, in the middle of the night, I need to blame someone…)
So the result is both something and nothing. Nothing has changed, but having it on paper has allowed me to have the school system switch her from SLD (specialized learning disability) to OHI (other health impairment) and this has opened up a bit more in the way of services for her. Working with the pediatrician we’ve cut back on the stimulant and added Risperdal (an anti-schizophrenia medication), which helps to control many of her ‘initials’ (the OCD [obsessive-compulsive disorder] and ODD [oppositional defiant disorder], specifically) that have contributed so heavily to her attention issues. Also, it encourages eating, so that helps balance the affects of the stimulant medication (so she puts food in her body, feeding the brain, and she’s managed to get back on the growth chart – and has enough fat on her body, now, to have begun puberty.)
Yes, puberty. And puberty is as effing scary for me as it gets. The pediatrician has given me the information that he gives to all of his parents of ‘impaired girls’ – once her menses have begun and are regular he will, if we wish, refer us to a gynecologist to arrange for long-term birth control. Because she’s impaired. And because she’s impaired, she’s at very high risk of having Very Bad Things happen to her — and because those Very Bad Things are bad enough without a pregnancy as a result (particularly, in her case, since she’d be very likely to pass on her trisomy – and the one thing she’s always stated wanting to be, when she grew up, is a mom…this is not a discussion with her I’m looking forward to having).
Because I can’t protect her all the time. I tell you, honestly — I gave birth twice without epidural, I’ve been burnt, I’ve had a terrible back injury that required surgery – and there is no greater pain I have experienced than that moment, listening to the doctor… imagining all of those Very Bad Things. I was certain, certain, my heart had stopped.
So… each day is a new one, and who knows what it brings. Who knows what her IQ will ultimately be, whether she’ll ever be able to even partly catch up to her neuro-typical peers and consider college or a trade, whether she’ll be able to live independently as an adult. We just don’t know – and that’s what keeps me up at night.
I write this, not because I want you to think anything special or different about me (because I’ve just been doing my job), but when you see and talk to that kid next door, at the grocery store, or in your kid’s class who clearly has something going on (whether it’s ADHD, autism, Asperger’s syndrome, or a myriad of other possibilities)… think about Emma. Treat them with kindness. Look at the parents with compassion – however stressed, however obviously overwhelmed they appear at that moment, they are doing the best they can. Believe me – if there were some way to make Emma’s chromosomes normal, if I had to step in front of a speeding bus to guarantee her a real stab at a normal life I would, in a heartbeat. So would these other parents. Accuse them, us, of a lot of things, but never accuse them of not trying their gods-damned best.
And that’s the end of this bully pulpit session.
ADHD Awareness Week is September 14-20 this year.
Has anyone heard of another attempt at organizing Blogging For Kids With Disabilities like the one we had done a few years ago?
Is anyone interested in being a part of one this fall (ideally, for me at least, during the aforementioned week, but certainly it could be scheduled at another time)??
Life has been rather more distracting than usual the last several months – many, many appointments…we’ve run the gauntlet of neuropsych and genetic testing for Miss Emma. Results from the genetic testing are still outstanding – yet before us is the ever-so-enjoyable Large Battle With School for appropriate services and IEP. Heck, getting them to switch her from SPD to OHI looks to be akin to the invasion at Normandy. Things aren’t looking good, in any case – we’ve been hearing results we’d strongly suspected, certainly, but even so it’s not news any parent wants to hear.
For the discussion of Things Which Keep Me Sane we find ourselves at the studio. Last night was the unloading (of the salt kiln) – and it was a grand ugh moment. Not ugh as in it was really effing cold, although it was can’t-feel-my-fingers cold, but ugh as in ‘why the hell do most of the pieces look like total shite?’
I must say that the weather has been thirteen shades of foul for weeks, so Sunday (in the rain, wading through ice water up past our ankles as we clutched, hunched-over, freshly-wadded pieces to our chests (in an attempt to keep them dry) through the back area to reach the kiln. For hours. Fuck.) we finally, finally loaded for the first time this term – I mention this because although we weren’t arse-deep in blizzard it was colder than a witch’s tit in a brass brassiere Monday when the kiln was lit (with difficulty, mind) and salted. So it was run to cone 9 – but because we’re having burner issues and then the cold..well, it’s clear that the top and area in front of the bricked-in opening reached 9, the rear and center certainly did not because a lot came out looking like under-cooked crap. *siiigh*
I have two pieces that just need to go again, but are otherwise fine, and two bowls that were lined in a glaze that was somehow Tremendously Not Right, and so I need to re-glaze and run them again. I threw some tenmoku in one (the other I have to dremel first, as there is schmutz in the bottom – it appears that there was some exploding wadding, probably the pancakes between the shelves and the support bricks, not under pieces) and popped it back on the cart (given the number of pieces that require re-fire I imagine we’ll be able to re-load very soon…probably not this weekend, but hope ever springeth eternal.) I had used that same glaze a plate, as well, and before I left last night I sprayed the offending surface with some malcolm davis shino – we’ll see what happens.
I have some other pieces to glaze that I just pulled off the bisque shelves, and I glazed (high-fire, not wanting to wait on the salt kiln) a bowl last night for the Empty Bowls project – I have been much better about being on top of things this year, in past years I had issues with getting pieces through the process in time to make the donation (and if I can get a second glazed in the next couple of days I may have two to donate – we’ll see, in theory I should be able to get in this weekend, at least for a little while, as I need to throw a stoneware cassarole for my sister and fuss with trimming pieces I threw last week). Small bowls move really fast – so what I have sitting are bowls too large and non-bowls. One of these days I need to photograph the lot and get my etsy back up and humming – after some bizarre server hiccough made all of my listings go bye-bye I simply haven’t had time to re-list what I have already photographed, much less goof around with the things I’ve been schlepping home from last term.
Other life-bits go on as usual: resident elderly is the same as ever, office follies continue apace (I should note that the Program has been online for a while, and printed Programs are due from the printer any moment so will leave Kalamazoo in batches forthwith. So for godssake don’t call me about not having received yours, yet!), and the superhero in our midst is making fantastic progress with reading, writing, and all other things kindergarten.
It’s ADHD Awareness Day again! Read and be more aware! (and if you have the time volunteer in your schools! I do – medieval, medieval, medieval!!) Myth: Attention-Deficit Hyperactivity Disorder isn’t a real medical disorder.
ADHD has been recognized as a legitimate medical diagnosis by major medical, psychological, and educational organizations; these include the National Institutes of Health, the U.S. Department of Education, and the American Psychiatric Society, which recognizes it as a medical disorder in its Diagnostic and Statistical Manual of Mental Disorders. It is biologically based, and research shows that it’s a result of an imbalance of chemical messengers, or neurotransmitters, within the brain.
The primary symptoms are inattention and impulsiveness, sometimes also combined with hyperactivity. Those with this diagnosis often have difficulty with many core aspects of daily life, including time management and organizational skills. My Emma is combined-type, that is she displays all of the aforementioned primary symptoms (in spades!). Like many other parents of ADHD children I know, after her diagnosis and education on the nature of the disorder I noticed the signs that allowed me to trace it to her paternal line – I know parents whose own ADHD was diagnosed only after their children and were relieved to learn the information that put their own experiences to date into clear perspective.
Myth: ADHD is a new diagnosis.
The symptoms that describe the disorder were published in the respected medical journal Lancet in 1902, first described by George Fredrick Still. Although the technical moniker has changed over the years, the disorder described has not.
Myth: The use of Ritalin is a fairly recent development.
Ritalin has been in use for over 45 years and Dexedrine was used for ten years before that. Something new, however, is delivery – in addition to tablets, there is long-active time-release, and even the same stimulant in a patch (marketed as Daytrana, which Emma is on now and which I am grateful for as the delivery method both circumvents her rocket-speed metabolism and leaves her system slowly enough that the stomach issues that led to poor appetite and mood swings are almost non existant). There are many other stimulant medications on the market, now, increasing the ability of pediatricians to best treat the individual needs of individual patients.
Myth: Children with ADHD eventually outgrow their condition.
On the contrary – more than 70 percent of the individuals who have ADHD in childhood continue to have it in adolescence and up to 50 percent will continue to have it in adulthood. Given the severity of Emma’s displayed symptoms I am fairly certain that she will continue to have struggles with the disorder into adulthood and may need to treat it with medication, in addition to other treatments, even then. Early diagnosis has been key for her in our striving to give her the best tools possible to succeed – estimates suggest that 6% of the adult population has ADHD and the majority of those adults remain undiagnosed (only one in four of those diagnosed seek treatment). Without help, adults with ADHD are highly vulnerable to depression; anxiety; substance abuse; career, legal and financial problems; and trouble in personal relationships — children left undiagnosed or diagnosed very late struggle with self-esteem issues, difficulties in social interaction (which can inlclude run-ins with authority in and out of the school setting), and overall poor educational foundations. Only through early diagnosis have we been able to work with both pediatrician and school system as well as we have to ensure Emma has what she needs both educationally and chemically to put her in the best position possible for learning and advancement.
Myth: ADHD affects only boys.
Girls are just as likely to have ADHD as are boys, and the gender of the child makes no difference in the symptoms caused by the disorder – because this is a persisting myth, however, boys are still more likely to be diagnosed than girls. Emma, obviously, is a girl with the disorder.
Myth: ADHD is the result of bad parenting.
This one always gets my riled, especially when I read it in conjunction with opinions of physicians in other countries to attempt to claim this it’s merely an American invention. Parenting these children is difficult, plenty difficult enough without the sort of stigma this myth bolsters. A child with ADHD has been taught that blurting things out in class, getting out of their seat, paying no attention to adults teaching, and letting their impulses for self-entertainment rule their behavior are wrong – the child cannot control these impulses and the issue is rooted in brain chemistry, not discipline. Overly strict parenting, like punishing a child for things s/he can’t control, can actually serve to make ADHD symptoms worse. Professional interventions: drug therapy, psychotherapy, and behavior modification therapy (in varying combinations) are often required. While I tend to lean toward strictness, we are aware of the time of day, timing of medication, and even what she’s eaten and the amount of sleep gotten – we, therefore, respond to Emma’s behavior accordingly.
Myth: People who have ADHD are stupid or lazy – they never amount to anything.
Recent studies show that people with ADHD are of above-average intelligence and certainly aren’t lazy. Many well-known, high-achieving individuals from the past are thought to have had the disorder, including Mozart, Benjamin Franklin, Abraham Lincoln, George Bernard Shaw, and Salvador Dali. There are high-achieving individuals with the disorder in business today (to consider merely one career area) including top executives David Neeleman, founder of JetBlue Airways, and Paul Orfalea, founder of Kinko’s. The high incidence of co-morbid learning disorders can compound the appearance of a student lacking in intelligence, and getting extra help for Emma’s LDs has been a particular focus for us from 1st-grade to present (4th grade).
Consider checking out these Expert Podcasts about ADHD.
(posted one day late, as for some reason I could post on the old version of my blog last night but not this)
Tomorrow is ADHD Awareness Day.
I need to talk to Emma’s teacher tonight, but I suspect 4th grade is too old for me to continue my classroom visit…it’ll likely just cause her grief.
Will be blogging it, as usual.
Please send me email if there is something in particular you want me to address: lisa at carnell dot com or my university email .. I’ll check both.