The View From Kalamazoo
Uh. Yeah, great. Thanks.
So I give a long interview. I give examples, I include URLs to my Children with Disabilities blog series, you name it.
What do they latch onto? One light-hearted-in-context end-of-conversation quip.
ADDitude Magazine naysayer article.
I’m not sure how to feel about this. *grumblesnarl*
On ADHD, part III
This final installment in my series on parenting my ADHD kid appears as part of Blogging For Kids With Disabilities Day, initiated over at 11D. Here is a list of other participants (please see 11D for any later additions I may miss):
11D
The Useless Tree
Big Balagan
Postcards from LA
I Speak of Dreams
Moot Thoughts & Musings
Ancarett
My daughter Emma is 8 years old. She has ADHD and learning disabilities. It might be a good idea to add that ADHD is known to have a significant chance of other co-morbidities, as well, so it’s not unusual for teenagers (as not all of the co-morbid conditions appear in early childhood) to be struggling with ADHD, LDs, and other things, such as OCD, ODD, anxiety or depression, etc. Once the biochemical system is wonky in one way, it’s not hard for me to see how other biochemical area may be touched as well – like a spider’s web..the vibration of a fly on one end of a strand of silk can be felt throughout the web. I’m watching Emma closely, therefore. I see anxiety-driven things (like nail biting, and teeth grinding in her sleep), and I don’t be surprised if OCD becomes more pronounced – I’m seeing some Monk-like things, but they are still pretty scatter-shot.
On ADHD, part III
Note: A lot of other parents have a lot of stories to tell, and there are many children struggling with bigger issues, I’m not writing these (part I, part II) to bewail my situation nor to compare Em with any other child – but if you don’t know what this is like, maybe you should. If you’re just starting down this road, know you’re not alone and please look to the links at the bottom of the left side-bar for more information and help. It’s not easy, and admitting to others or to yourself that it isn’t easy is freeing – let go of any guilt, any shame, and other baggage other people are trying to saddle you with and then use that energy for your kid. There is a lot of hooey out there, much of it coming from the media, so I hope I can dispel some of it with this series of blog entries.
Education and the divine Miss Em:
Emma never named her dollies, not until just before she was 4, and then all were named the same name. She never drew representationally, not a flower, not a house, not anything. I’d had her in preschool since she was 3 1/2 and they’d do projects and such all of the time – she needed a lot of help just to glue one piece of paper to another. She scribbled, and usually stuck to one or two colors of crayons, as she’d not be at the table long enough to switch more than that. She ran everywhere – walking just didn’t seem possible unless it was next to an adult holding fast to her hand. I knew something was not quite right, but didn’t know precisely what wasn’t on-target for her age, and as she was (still is) the apple of Daddy’s eye I didn’t have support there, either. I had her hearing, and then her speech, tested as, at least, it did seem pretty obvious to him that she wasn’t where she should have been verbally. (hearing testing on a severely ADHD kid, BTW, is hell on wheels) She was a year behind in expressive and receptive speech, and so speech therapy was eventually arranged. She had a year of it the school year before Kindergarten and spent half-days in a pre-primary impaired/PEEP environment.
She started Kindergarten at 5 – turning 6 mid-year – and I was certain this would be the test. I was right. The teacher reported back almost immediately (her lack of focus, her activity level, and how dreadfully, dreadfully behind she was, not to mention the way she had of totally disrupting the entire class and keeping every child there off-task) and with that input Dad was finally on-board with further testing and the diagnosis (from a psychology student finishing his Diss. and doing his clinical time, he was specialized in young children and diagnostics) showed where we were: the normal range was along the bottom of the page, and he had her tracked to a place close to the top edge. Orbit, in other words, she’s in orbit.
What parent wants to hear “There’s something wrong with your kid.”?? I was both relieved that my instincts were correct and I wasn’t just a bad parent, and devastated that I was right. I mourned. I mourned all of the little dreams that pregnant mothers have of the wonders their children will be and achieve, mourned the assumptions that she would surely go to college, and, I realized later, mourned the vision I had for myself as a parent, my ideal. All bets were off – new information, new input, new and utterly unexpected challenges, a new game plan. I suppose that may sound morbid, but to be present in the situation and deal head-on with reality, I needed to let loose all of my baggage that didn’t fit. To deal with Emma as she was I had to stop thinking of Emma as she could have been…if… It was very hard. [It still is. I often see her best buddy from pre-school (same age as Em) excelling in sports, in school, in everything she tries, it seems. I’m friends with her mother, and I congratulate her achievements and am happy to see a kid I like a lot do very well. But, as unfair to myself and to Emma it may be, it hurts. There is a pit in my stomach and literal heartache at the reminder of just how far behind Emma is, and an overwhelming feeling of helplessness that I can’t, no matter what I do, really make it better.]
I began researching, buying books. I worked with her ped to start medication. The first day she took it she drew a picture of a house. She sat on a chair at a table and drew a picture. I didn’t have a kid sedated and drooling like the naysayers warned – I had Emma instead of a blond whirlwind. Emma instead of a feral child. Emma instead of a child so unfocused she couldn’t converse.
I fought with my family over this issue – phone call after phone call of them accusing me, badgering me, guilt-tripping me about meds. I’m just a bad parent, or a lazy one drugging my kid into submission…the usual script. I had to hang up on my sister during one particularly painful exchange. My father kept telling me he wasn’t comfortable with medicating Emma. I shouted into the phone that his comfort wasn’t my concern. (at least I had a couple days of peace when they were too pissed off at me to call again) This was November – my sister was coming up from TN for the holidays and there was no escaping it – I’d have to face their wrath in person. They saw the difference on – and with something to compare it to, off – the meds. They stopped.
This is not to say there has been all smooth-sailing. There was the usual period of trial-and-error dosing. She has switched meds because the original, while moderately effective, also held some nasty side-effects for her. There is a letdown point (sort of like a sugar ‘crash’) after the med wears off that is not fun for her. She lost a fair amount of weight right at first, and that meant my petite girl who had always been at the 5% mark on the height/weight chart fell off the chart completely. We’ve made progress, but still aren’t back on (I have fantasies about that 1% mark). We’ve had to creatively deal with her system’s natural tendency to metabolize medications at twice the normal speed (yes, even Tylenol). We have had godawfulexpensive metabolic testing to be sure all we’re dealing with is the ADHD, bone age x-rays to monitor her growth, I try all sorts of different things to get nutrition into her, as a side effect of stimulant medication is reduction in appetite. Pediasure, not so successful. Wheat germ to increase her appetite, couldn’t get it into her. Having the same experience with flaxseed oil (omegas – UK study indicates a deficiency in ADHD kids compared to their peers) as she can’t swallow the capsules (trying milkshakes next). After a lot of attempts have found a vitamin she’ll take. If she doesn’t eat, as in if she skips lunch at school and no adult notices, she won’t metabolize her meds properly and they’ll all have a very, very bad afternoon. It’s an ongoing struggle. She’s so thin she can’t float, so swim lessons have been a scary thing for her. She is so thin she dehydrates in no time flat, and I’ve stayed with her in the hospital after a little tummy bug required a few days with IV fluids.
Even though the eating-while-at-school struggle is a frustration (how is it that a bunch of adults can’t watch one little kid like a hawk and keep reminding her to eat? It’s not like I tie her down and force-feed her at home, it just requires effort) for the most part other things have not. We started her with continuing speech therapy, and I had asked for an assessment that first year (but the psych dragged her feet and never responded to anything from me or fro the teacher. I didn’t know better, then) but that waited until her second year there (new psych!) and an IEP was put into place. We’ve documented, to some degree, her learning disabilities. From what I’ve read roughly 50% of ADHD kids have LDs, 80% of those LDs are reading-related, as are Emma’s. She has a teacher consultant work with her twice a week, when possible the teachers have all modified their testing for Emma (she shuts down if she thinks she’s being tested) .. modifications which require a ton more time and effort on their part. At the end of first grade I requested she not be promoted, as she was still so behind and simply hadn’t had the time to catch up to any reasonable point. The teacher backed me, and despite it not being something IDEA likes, the principal nor psych gave me no hassle (they know me by now. it’s best not to hassle me, I never walk in the door without knowing what I’m asking and why.) There have been some glitches, but the office staff (there is no nurse) handles her medication just fine and they are fond of her. We’re lucky that just about everyone who works with her is fond of her, as she’s a tough customer, and her teachers have been as interested in Emma’s education as I. Not everyone has this sort of school experience, and I can’t assume it will continue to go as (relatively) smoothly – I can’t imagine trying to do this if I had to fight her teacher tooth-and-nail.
We pay oh-good-lord! amounts for tutoring (tried summer school, and though free was not successful for her). We’ve done gymnastics off and on (mostly on) to give her a physical outlet that 1. worked with her size, and 2. wasn’t a team sport. I manage to get partial scholarships for her to take art classes at the art institute here, as it’s 1. one thing she really enjoys that she doesn’t get frustrated by noticing her different skill level, 2. benefits her fine motor function, which is also behind, and 3. seems to boost her self-esteem, which is, as far as I’m concerned, a vital thing. She’s been to week-long girl scout day camp a couple of times, and liked it a lot – the group at her school, however, are all the next age-level, and I certainly have no time to be a leader, or PTA mom, or any of that.
I admit that while I’ve done a ton of research on the medical side of things, I lag far behind on the legal. I will need to have that well in hand soon, as each new school year I worry that this will be the year I have to stage my own version of the OK Corral gunfight and come out with both guns aimed, cocked and ready. I know money is an issue for the schools, and I know that our definitions of ‘adequate’ aren’t going to match. I’m more than a little frightened that at high noon I don’t be able to fight for her as skillfully as she’ll need.
We do what we can, and always wish we could do more. This stuff isn’t cheap, not by a long shot. But this stuff is necessary, as the end-result of not worrying so much about her education, development, and self-esteem could be very grave, indeed. A 13-year study has recently asserted that young adults who had ADHD are more likely than their peers to get fired, to shun birth control and become parents by age 21 and to have higher credit card debt and less savings. I think a similar study should be set up to track children from K-age 25 to track age of diagnosis, age of treatment, track the child’s progress in school – there is more in play than just the ADHD taken out of context. If a child has poor school performance, low self-esteem, and poor peer relations (whether ADHD or not) I would expect to see some of the same results – so those factors as a result of poorly managed ADHD will only be exacerbated by it as the child ages (note I did not say ‘matures’). This is something that drives me to work as hard as I do on this stuff – visions of my darling daughter in prison orange, as a pregnant teen, as a runaway set up for abuse by who knows who. I can’t ignore the worst-case scenarios because it’s when I do that, that moment, that it’ll start to unravel. If I don’t set her up for as much success as she can achieve now it’ll be too late later. So please don’t accuse me of being unduly negative because I have to live deeply grounded in reality and possibilities that don’t begin and end with images of graduations, accolades, awards. My daughter’s life is at stake.
Now, here’s the good part, the part I know you’ve been waiting for and have feared I ignore completely: Emma is a wonderful gift.
She is beautiful, and creative, and funny, and inventive, and wonderfully entertaining. She is kind and loving.
She makes up songs about anything and everything. She fancies herself Buffy the Vampire Slayer and will sing along with Dad’s episode soundtrack, draws portraits of herself and her brother, and makes up wild dances with weird gymnastics poses.
She is obsessed with weather, volcanoes, and is fascinated by doctors and nurses and doctor-shows (like on TLC/Discovery Channel). She makes Lego structures that are carefully designed and require grand explanations on form and function.
She insisted on being at the hospital when her Brother was born, talked to him (through my belly-button) all the time, and held and kissed my hand during labor (early-on, before my parents came to supervise).
She mothers her Brother and she cares for the kitties (she does the food, I do the water, Dad does the litter). She helps her great-Grandma by running and getting her this and that.
She loves photographs and does her own version of scrapbooking (all her, I don’t do it). She dresses some of her Ken dolls in lovely springtime frocks, while others are always in pants.
She’s concerned when I have a headache and will kiss my forehead to make it better. She feels the loss of my Grandfather (who died when she was 9 months old) so acutely that she’ll burst into tears, overcome with missing him. She knows he loved her especially (she has his taxi-cab ears!) and treasures images of him holding her.
She enjoys helping clean anything that can be cleaned with a wipe or some spray-cleaner.
She sets the table, puts away the clean silverware (and arranges and re-arranges the drawer!), and loves to vacuum.
She wants to be a weatherman, a teacher, and a doctor all at the same time.
Yes, I realize this was a disproportionately small bit compared to all that came before – but it’s my experience with the hard parts that may offer a glimpse into the unknown, or that some may need to hear to feel less alone as they navigate the systems and struggle with their own situations. I don’t think I have to offer details on how Emma snuggles into my lap when she’s feeling ouchy or how her eyes twinkle when she’s acting silly … loving the child is natural, learning all that is necessary to be their advocate isn’t. You already know how to enjoy the wonderful, quirky things about your child..and even on those days when it’s not easy to enjoy the good parts because the frustration is so great (I have them too, I think everyone does sometimes) know that tomorrow is a new day. Don’t feel guilt over what joy you may have not noticed in your stress or your anger today, revel in the knowledge that tomorrow is a whole new day to enjoy seeing a whole different world through the wonderfully wide, impressionable, creative eyes of your wonderful ADHD child – and then do it..
On ADHD, part II
(Later than I had intended, but I’m starting week 4 of ‘hell week: the month’ and things were just too stressful to take a few minutes to write anything. I may have to take up smoking just so I can take smoking breaks. Why do I work here, again?)
Part of the difficulty of having a child with ADHD is the stigma – the common media-touted belief that all ADHD is can be explained by blaming bad parents who are too lazy to raise their children, and so demand medication. Her symptoms are my fault, getting a diagnosis and treatment is my fault – there is no end to the accusations (and with electronic media like this blog, as well as other genres, it can be a near-daily bombardment).
It’s been all over the media for 15 years, whether mainstream and prime time, pbs, you name it. Alternative medicine sites blame western medicine, overly structured school environments (because basic classroom control is new, right? anyone reading attend elementary school pre-1980?), vaccinations, sugar, food dye, wheat, caffeine, processed foods, and who-the-hell-else-knows. I’m sure someone has blamed it on the conservatives, and others on the liberals. I really wonder about the dramatically high rates of cephalo-anal conjuncture in the U.S., at this point.
I don’t get defensive. I don’t feel guilt. I do, however, get really damn angry that a lot of kids are suffering in frustration because a whole lot of adults can’t seem to make it to the realization that this isn’t about them, and isn’t about their politics. But the thing is, it’s hardly only the U.S. – in fact, we’re closer to getting it right than anyone else (and that’s sad considering the mount of flotsam fouling the waters here). Treatment in Europe trails U.S. : For unruly pupils, the wrong answers? (which ran nearly a year ago, but I’ve been lax in posting about it) shows just how far ahead we really are. The UK is second in awareness and treatment, but that’s not a close second (not only are the numbers and support institutions/groups lagging, but they stop treatment once the child reaches adulthood).and other European countries are barely within range of the starting block. The symptoms of ADHD are blamed on single parenting, mixed-race families, poor discipline, and just plain bad kids (“People here just don’t want to recognize it. They think ADHD is just an American version of being a naughty boy.”) – where is the care in medical care? Where is the education in the educational systems?
“Most primary care clinics are very psychoanalytic and don’t see this as a problem of the child that has to do with biology,” said Dr. Véronique Gaillac of the Ste-Anne psychiatric hospital in Paris. “Some of these children go through years of psychoanalysis, which to me is not at all effective. Many doctors are passionately, angrily against the idea of ADHD. They think it is an American invention.” … Schools and teachers, who know little about ADHD, are often vehemently opposed to medication and offer “nothing” in the way of therapy or behavior modification, Gaillac said.
An American invention. So was the telephone – do they have those in France? (sorry, snarky. I’ll get back on topic)
A good friend of mine, faculty at a very large state university, has had numerous conversations about this. His son was diagnosed, and through that diagnosis (it often runs in families, folks) realized his own struggles pointed directly to the disorder. In Europe the reaction to a kid with what we know as symptoms of ADHD was punishment – a good cuffing – and a child growing up believing that he is bad, stupid. This was my friend’s experience in Germany. He still struggles as an adult, but he had developed coping mechanisms long before he had any inkling of the root cause – he was one of the lucky ones, in this regard. Children with more severe symptoms, or who are less inquisitive and intellectually driven than my very bright friend, do not fare as well.
Studies have shown that the fallout of undertreatment is dire and longstanding. Among teenagers with untreated ADD, 40 percent need special education, 40 percent of girls with the condition end up pregnant, 20 to 25 percent end up arrested and 20 percent have serious problems with drugs, according to Dr. Russell Barkley, a professor of psychiatry at the University of South Carolina Medical School.
“I don’t want to oversell this disorder, but its not benign — not just about a little too much energy, or too much chocolate or caffeine,” Barkley said. “Treated early in childhood, these kids do well. But there are irreparable consequences from not taking it seriously.”
On websites and in media sources I often encounter ranting about how 85-90% of the diagnoses and stimulant medication treatment worldwide is in the U.S. Accusatory tone and wild knee-jerking as the statistic is misapplied not withstanding, the response I have is “No kidding – the leader in research, education, and treatment development and implementation has a lot of diagnoses and people being treated? Funny thing, that.” Actually the response I initially have is much shorter and a lot crasser, so you can insert whatever vulgar, sarcastic response you care for and it’s probably close to the mark.
The author of the article notes that “If treatment rates varied this much for appendectomies or Caesarean sections, it would be a considered a medical scandal. But mental health diagnosis depends not just on science, but also on doctors’ paradigms of psychiatry and on society’s attitudes toward children.”
Exactly.
My attitude revolves around doing the best I can for my child, no matter how hard that is financially and emotionally – I’ll fight for her education, for her emotional well-being, for her future. I’m just lucky to live in a country where, shortcomings aside, I have the best chance of it.
On ADHD, part I
I’ll preface this topical mini-series with the promise that I’ll be frank..perhaps it’s a warning that I’ll be frank, but nonetheless there is no point to my blowing happy smoke in your direction or pretending things aren’t as they are, so I won’t.
It’s ADHD Awareness Day! To celebrate I’ll be trotting out some of my favorite ranting points, and it seems appropriate to begin at the beginning: “ADHD Doesn’t Exist”
Ok, my first response is “Bullshit.” followed by extending invitations to dinner at my house. (really. come see.) Once the visceral reaction has calmed itself some I can then embark on my (unplanned) educational mission to offer information and arguments with the result of bitch-slapping these chuckleheads into a reality-check. (ok, the visceral reaction never completely goes away. I’ll admit that)
So let me tell you a story, pull up a chair. It’s the story of why every time some media source or another blames ‘ADHD’ on sugar, or parenting, or TV I scream and throw objects at the television screen. You see, I believe ADHD is congenital – the little darlings are born with the brains they are born with, for good or ill. (I’m not commenting on any other diagnosis or damage that later shows similarities with ADHD symptoms.) My first child, my Emma, has ADHD. It was a long road to that diagnosis, but not as long as is for many children (and for that I am grateful).
I had a rather unpleasant pregnancy (Hyperemesis Gravidarum) but otherwise there was no drinking, smoking, other drugs, trauma (beyond puking 24/7 on an almost hourly basis, and yes I was threatened with IVs on more than one occasion). I continued with my classes and my staff position here at WMU, and I got through OK (thanks going out to the instructors who understood my condition and didn’t hassle me about often leaving the class abruptly to run to the john to puke, or let me fax homework or papers if I couldn’t stop puking long enough to walk across campus. seriously.) Emma was full-term, very small (5 lbs 10 oz) but within normal range. She’s still small, she’ll likely always be small – there are weebles on both sides of the family, she comes by it mostly naturally I think. She was very active in the womb, and came out a very alert (eyes open, looking around) newborn after 24 glorious hours of back labor. She didn’t sleep much, and hated being put down or held face-to-the-chest – she wanted to see what was happening in the room. She moved constantly (wild, jerky movements a lot of the time), and was very strong for her apparent frailty – she could support her weight on her legs at less than two weeks, and a few days old I could hold her up in my hands and she’d do a full superman (head back, arms out, legs out…like flying in the air). The pediatrician who had been concerned about her size left me alone, at that point, since she was clearly doing just peachy.
She wouldn’t nurse, however. If she couldn’t latch on right immediately she’s scream in hungry frustration rather than try to latch on again. She still shuts down almost immediately if she hits frustration. She got breast milk via bottle for as long as I could do it, and then formula…she still had it longer than most babies. She had this habit of lurching forward..she’d hit me with the back of her head (oh, the bloody noses I got!) or I’d be protecting her head from the edge of the table. She refused to crawl (since she hated being on her belly as she couldn’t see the room) until she was almost a year old. [I didn’t think much of it at the time – I had walked before I was 10 months and never crawled until much later..but I was dramatically bowlegged and had braces on my legs at a year – I couldn’t crawl easily, so I walked instead.] Again, developmentally she was still sort of in range (granted, it’s a wide range for babies), but if something was harder for her and frustrated her she’d shut down and stop trying, so working with her on things was often a real challenge.
Here’s the hindsight after having another child and being able to pick apart my first-timer experiences: Emma never stopped moving in the womb. Seriously. When I was pregnant with Colin I actually ran to the hospital freaking out and sat on the monitors for a while because he wasn’t moving, and kept stopping moving for long periods of time – he was sleeping. He slept. I was so used to constant, almost frantic, movement even when she slept that I thought there was something wrong with Colin. Newborns sleep, the books even say so – most of the time, in fact, do newborns sleep. Emma slept very, very little. She was, I realized much later, hyper as an infant, and some of the developmental things I struggled to work with her on she couldn’t get because she clearly couldnÂ’t pay attention. The books couldn’t answer most of my questions about her, there wasn’t anything on most of her behavior, and what the books did describe as normal for each age range often didn’t much fit Emma.
As she never stopped moving her gross motor was fine. Fine motor wasn’t so hot, as that required some patience and focus. Verbal was really behind, and when she was 3 I took her in for hearing testing and speech testing because I had grown concerned. Her hearing was fine, her expressive and receptive speech behind a year, so I arranged for speech therapy that following (pre-K) school year. One of the things she did was cut all words off after one syllable – hurrying through everything, and she couldn’t focus on the rest of the word, even when I worked with her (and I worked with her on things all of her waking hours with me..she never seemed to learn anything. it was frustrating, and tiring as I waited to write class and conference papers til after she finally fell asleep). She never slept through the night a day in her life (well, until we finally got medication when she was 6 to help..more on that later). She would wake between 1:30-3:00 AMevery single night. When she was an infant/toddler it was more than that – she’d also be back up at 5ish, and getting her to sleep before 10:00 PM was hell on wheels.
The conclusion to this part of the story: Emma has always been Emma. She rarely watched any TV – she couldn’t sit still longer than a commercial – she ate the typical infant diet (with close attention paid to sugar and salt content) and I didn’t eat anything that would have put a lot of sugar or anything else in my breast milk (although we had one bad experience with my eating broccoli, and so I stopped eating any gas-producing veggies). She never had any adverse reactions to vaccinations, nothing save some tenderness and the need for a little Tylenol. I maintain that absolutely, positively this kid has been as she is now all of her life, including in the womb. The biochemical processes that result in her symptoms and LDs have always been that way. This is why otherwise sensitive, well-meaning friends of mine (mostly of the oh-my-god-liberal persuasion) who chastise me about what goofy crap I should be doing to her diet and how dare I rely so heavily on the evils of stimulants and Western medicine are treading on very, very dangerous ground with me. I like these people, we can discuss any topic in a friendly way whether or not we agree (rather, I can filter my responses in such a way to keep things pleasant..not all of them are the agree-to-disagree types) except Emma. Friends and family (on the opposite end of the political spectrum) have me an incredibly hard time over the diagnosis and medication, too, just using different reasoning (more on that in part two, however).
Clinically (lots of articles can be found at Schwab Learning)
- Inattentive — can’t seem to get focused or stay focused on a task or activity
- Hyperactive-impulsive — very active and often acts without thinking
- Combined — inattentive, impulsive, and too active
Emma is combined type, and pretty darn symptomatic.
Continuing from the same site, a few of the symptoms of AD/HD are:
- Doesn’t pay close attention to details
- Doesn’t seem to listen when spoken to directly
- Is easily distracted
- Has difficulty organizing and finishing tasks
- Fidgets with hands and feet; has difficulty remaining seated
- Runs about or climbs excessively when inappropriate (seems “motor-driven”)
- Talks continually Interrupts conversations and intrudes upon other kids’ games
- Avoids tasks that require sustained mental effort (e.g. schoolwork, homework, games)
- Does things that are dangerous without thinking about possible outcomes
While barriers to treatment have been reduced in recent years, there is a climate of blame, shame, embarrassment and stigmatism that discourages some from seeking help for debilitating mental health disorders, including AD/HD. There is compelling evidence that a large number of youths with a variety of mental disorders, including AD/HD, are not being served, are inadequately served, or are inappropriately served in communities across the country (Surgeon General’s Report on Mental Health, 2001; Jensen et al., 1999; MTA, 1999). The Executive Summary on Mental Health: Culture, Race and Ethnicity, a Supplement to the Surgeon General’s Report (2001) indicates that 75-80 percent of children and youths with mental health illnesses do not receive needed services. Misinformation often demonizes those in need of treatment for AD/HD and may discourage individuals from seeking appropriate care. Parents may avoid professional help because they fear accusations of being labeled poor parents, individuals who needlessly medicate their children. Parents of children with AD/HD are often accused of seeking to medicate overly playful, non-complaint or mildly disruptive children. More likely, parents are struggling to help their children cope with a serious constellation of problems and are seeking help because previous attempts to reduce the impact of AD/HD have failed. Chronic, untreated disorders such as AD/HD are costly to the individual, family and society (Leibson et al., 2001). Parents generally seek professional help for AD/HD after a great deal of deliberation, consternation and past failures. We will summarize and attempt to dispel some of the common misconceptions about AD/HD. (please follow the link to some responses to commons myths about the disorder)
I can tell you that it’s very, very hard being the parent of a kid with ADHD. Apart from dealing with Emma herself I spend a lot of time having people like those ‘sensitive’ friends, family, perfect strangers, the media telling me that I’m a bad parent and a bad person. I caused it, or I didn’t cause it but I’m harming her by treating it, or I’m just a bad person trying to take her childhood from her, or I rushed into this without looking at ‘alternatives’ first, or…the list goes on. Listen, no one in Emma’s life has spent more time worrying about this, researching it, deliberating over options, meeting with professionals than I. No one in Emma’s life has cried themselves to sleep over this like I have. If I could have one wish come true (apart from wishing she didn’t have to struggle with this at all) it would be for all of the wagging tongues to stop and think before they open their damn mouths. I can respond to strangers with ‘How f-ing dare you!” but that isn’t really a good idea with people I otherwise consider good friends..or family for that matter (although I did hang up on my sister at one point as we were processing the diagnosis and making decisions on treatment). I’d like these people to, before opening their mouths, answer the questions ‘who am I to assume this parent is stupid and uncaring, and why am I about to torture them further?’ After they do that they can comment all they like – having a kid with a biochemical/neuro issue pretty much gives all of the jackasses and jerks of this world a free ticket to ride. It gets old.
Moving on, one of the leading experts on ADHD is Russell Barkley, Ph.D. (his bio states he is currently a professor at the Medical University of South Carolina, Charleston). He has written over a dozen books and more than 150 scientific articles related to the nature, assessment, and treatment of AD/HD. He is matter-of-fact, fact-driven, and my favorite author on this. (there are a lot of good authors and books out there, and I’ll post information on them throughout this ‘series’ of posts. please also note the links in the left sidebar) When I’m reading about this I’m not looking for platitudes or dumbed-down material (I’m the same way during pregnancy – I absolutely loathe the ‘What to Expect’ series of books. They’re mamby-pamby crap, and often give out rather incorrect or heavily-loaded information). To get you started, here are some links to recommended books:
Taking Charge of ADHD: The Complete, Authoritative Guide for Parents
