The View From Kalamazoo

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)

Attention-Deficit/Hyperactivity Disorder (AD/HD) is a neurobehavioral disorder that affects an estimated 3-7 percent of the school age population. The Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV), published by the American Psychiatric Association, describes three subtypes of AD/HD:

• 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

Public perceptions of attention-deficit hyperactivity disorder (AD/HD) are replete with myths, misconceptions and misinformation about the nature, course and treatment of the disorder. Popular misconceptions assert that AD/HD is not a disorder or at minimum, is a benign one that is over-diagnosed. Critics often claim that children are needlessly medicated by parents who have not properly managed their unruly, unmotivated or underachieving children, or who are looking for an academic advantage (e.g., testing or classroom accommodations) in competitive, high-stakes educational environments. Some suggest that “a growing intolerance of childhood playfulness may in fact be leading to more and more children being labeled with AD/HD” (Panksepp, 1998, p. 91). Critics rarely present evidence-based arguments and frequently allege that professionals are harming otherwise normal children by diagnosing and treating AD/HD.

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

Your Defiant Child: Eight Steps to Better Behavior