"You’re Not ADD (Part 2): You’re Befuddled"

My daily routines were knocked off kilter by a head injury that lingered — revealing how much I relied on structure to cope with attention deficit.
Life in the Fast Brain | posted by Kristen Caven

When the Mini Cooper left an imprint of its license plate in the bumper of my Prius, the insurance company said it was still a low-speed accident, and I couldn’t really be that hurt. Even my doctor dismissed the possibility of a concussion, despite that bang my headrest gave me on the back of my head, messing up my upper neck pretty good.

Suddenly, my life was capital-D Disordered, and I could see how inherently un-regulated I was without my usual structures.

Three weeks later, Enzo was diagnosed with ADD, and my immersion into this new world began. I began recognizing the tell-tale patterns of ADHD in my own psyche that had been there all along. At the time, however, they were confuddled with the symptoms of Post-Concussion Syndrome (PCS) that I was experiencing.

PCS is a lingering condition that arises when a concussion doesn’t heal. At the time of the accident, I had been in the final throes of polishing the manuscript of The Bullying Antidote and going a mile-a-minute preparing for the next project, trying to figure out the bad report cards, and grieving from the sudden death of a dear auntie. Rest, schmest. The stress of life didn’t stop — bills to pay, food to make — but I could no longer stay in control of my time. I would have a few good days a week and then the wheels would fall off. I struggled to keep teaching my Zumba classes; exercise keeps me focused and productive like nothing else.

Symptoms of PCS include attention deficit, impulsivity, irritability, a low frustration threshold, mood swings, memory problems, impaired planning, communication difficulties, socially inappropriate behaviors, self-centeredness, and a lack of insight, concrete thinking, and poor self-awareness. (Sound familiar?) Another thing that happens with a concussion is your blood pressure can go haywire, since an injured brain can’t regulate things as well. When I realized exercise was bringing on symptoms, I had to give up my daily sweat.

With the dull ache in my head, all of my other stabilizing structures became more difficult, too:Meditation would just put me to sleep; I couldn’t remember to take my herbs and vitamins; and I didn’t have the energy for my organizing routines. With caffeine off-limits, I couldn’t reach for a cup of focus.

Episodes of inattention began to mess up my life in big ways — like the time I didn’t go through all the steps properly when moving into my new computer, and lost my data when the robbers (yes, there was a break-in, too) dropped it on the way out.

Suddenly, my life was capital-D Disordered, and I could see how inherently un-regulated I was without my usual structures. I realized I had been living (somewhat successfully) with undiagnosed ADD all my life...but I couldn’t get the help I needed until my head had fully healed. Every medical professional I approached diagnosed me with capital-A Anxiety, which I most certainly was suffering, due to the not-raining-but-pouring challenges in my life.

Now that it’s all behind me (PCS sufferers, have hope!) I see what a valuable experience I had. I have so much more understanding and compassion for head injury now. The hardest part about a brain injury is that you can’t put your head in a cast, so people can’t see that you’re injured. Like mental illness, it’s “all in your head.” You can’t function like a normal human being, and you feel invisible and misunderstood.

I ended up doing eight months of counseling about feeling invisible and misunderstood. It was good to have somewhere to go and cry once a week, but my therapist could not really see or understand the ADHD connection beyond the trauma in my addled brain.

Cartwheels in Your Mind

What young love is like for my teen and his girlfriend — ADHDers both.

Life in the Fast Brain | posted by Kristen Caven

Enzo has a girlfriend! It's the most wonderful thing. With teenagers pressuring each otherthese days into going farther faster — and furthermore, first base now being what third base used to be — I was ecstatic when he told me he found a girl to hold hands with!

They both love hamburgers and unpretentious people. They even take the same medication!

— Kristen Caven

The lovely young lady is smart, cute, poetic, and funny. The two of them click as only two outside-the-box thinkers can, traveling on bursts of imagination and creating sweetness together. They both love hamburgers and unpretentious people. They even take the same medication!

As is our family’s way, we gave her a nickname. “Busy” has always got something to say and something to do. A short ride in the car with her takes you on a long journey with her interesting ancestors who were involved in historical events. It’s sometimes hard to get a word in edgewise, but she’s so charming you don’t really mind.

Together, the two of them have decided the difference between having hyperactive or combined-type ADHD (what she has) and inattentive-type ADHD (what he has) is that with the first kind, you can’t stop doing cartwheels. With the inattentive type, you can’t stop doing cartwheels in your mind.

Sadly, since school has gotten out, the unstructured nature of summertime has challenged young love. First, there is the busy-ness; for weeks at a time, one or the other is off and away on the adventures that breaks bring: Camps, sleepovers, and family trips. And when they’re both in town, one or the other of them sleeps until noon, or their phone has run out of batteries, or someone just spaces out. For days, Busy had so many sleepovers she lost track of time and forgot they had plans. Enzo’s heart broke, thinking she wasn’t interested anymore.

It was one of those challenging parenting moments. “Dave” and I had to fight the urge (sometimes winning, sometimes losing) to get involved and try to solve things. Busy’s folks were worried, too, aware that her cartwheels were making her beau’s head spin. The four of us bit our nails for days, hating to see Enzo in pain, doing inner cartwheels around this unintended rejection. We only sent midnight texts to each other once.

Eventually the moment came when Enzo asked for the car keys to go camp out on her doorstep. He came back with a smile on his face after hearing how insomnia had been playing havoc with her attention. He had tucked her into bed early, kissed her goodnight, and told her he understood.

"You're Not ADD (Part 1): You're a Blonde"

My friends had no trouble identifying what was different about me, but getting an official diagnosis was harder than I thought.

When my son was diagnosed with ADD, the inattentive kind, it put me on my own path to understanding my own attention pitfalls. As hard as it was to get him sorted out at fifteen, my own out-sorting has been even more challenging. This post begins a new, intermittent (naturally) series about trying to get to my own diagnosis.

There are those of us out there who wear our difference so naturally that it becomes part of our personality.

I hear stories all the time about how quickly doctors prescribe Adderall and Ritalin to anyone who seems a little distracted. But there are those of us out there who wear our difference so naturally that it becomes part of our personality.

Here is a list of character traits that have been assigned to me (mostly fondly, to my good fortune), and to so many others who may be secret ADHD sufferers.

1. Quirky
2. Weird
3. Chatty
4. A Social Butterfly
5. Naturally Stoned
6. Lazy
7. Unmotivated
8. Half-a*ed
9. Spontaneous
10. Flexible
11. Energetic
12. Distracted
13. Spacey
14. Space Cadet
15. A Dreamer
16. A Visionary
17. In My Own World
18. On My Own Planet
19. In La La Land
20. Moody
21. A Temperamental Female
22. A Bit Nuts
23. Bubbly
24. Ditzy
25. Dizzy
26. Scattered, and my personal favorite....
27. Blonde 

OKAY! I can own that! My blonde hair twists and curls chaotically, in every direction — not unlike the mind underneath it.

Blondes have more fun, right? And, because they help me laugh at my own moments of idiocy, I am often amused by jokes about people being dumb. Songs, too. ("Cuz I’m a blonde — B-L-A-N-D! / cuz I’m a blonde — don’t you wish you were me?" — Downtown Julie Brown)

My favorite blonde joke, for those of you who still remember Wite-Out™ and Liquid Paper®, goes like this:

Q: How can you tell a Blonde has been using your computer?
A: The little white marks on the screen.

A funny image to be sure, but the message behind this joke is actually deeply relevant to the ADD journey: until you get the right diagnosis, all the corrections you TRY to make can’t really solve the problem.

In the Mood for a Funk?

Living with rejection-sensitive dysphoria — the soul-sucking downside of attention deficit.

I wrote recently about the first thing William Dodson, M.D., says everyone with ADHD has: anInterest-Driven Nervous System. The second thing he says everyone with ADHD shares is an emotional response called Rejection-Sensitive Dysphoria. I kind of don't want to write about it, because there's that impulse to skip past the hard stuff and focus on the fun stuff. But it's hard when your mood falls off a cliff for what seems like such a little thing.

You get so tired of this feeling you want to give up before you even start.

— Kristen Caven

If you have this thing, you know what I'm talking about. If you don't, imagine (or remember) yourself as a teenage girl whose stomach is churning because there are so many choices in her closet and it's impossible to choose an outfit and the wrong combination could give her away as being different and bring the harsh and ultimately life-ruining judgment of her peers.

Or, a boy who lashes out at his brother's friends because it seems like he's never getting a long enough turn in the video game and it's not fair. Or a child who squeezes into a corner behind the door and cries at their own birthday party because things are not going the way they imagined. Or a grown-up who throws a party and can't seem to be in the moment to enjoy it.

It's what, eventually, makes you lose interest in that job you thought you wanted. Or hit "close window" instead of "submit" because you are not confident you'll win that award. Or fall into a funk and turn into a jerk when that guy/girl you like likes someone else. Or talk yourself out of liking that guy/girl as you eat/drink your troubles into oblivion. It's yeah, didn't really want that; those grapes were sour anyway. It's what keeps you stuck. Or going around in circles. You get so tired of this feeling you want to give up before you even start. It's one reason why people with ADHD don't achieve their potential. It's why an older man will decline an invitation to socialize because he's realized, or decided, he's "not good with people."

It helps to know RSD is a thing, if for no other reason than to be able to go, "Oh, now my brain is doing that thing it does." It helps to know that social skills might not come as naturally to you as they do to other people. And it's okay to get some help breaking down the details so you can understand the rules.

Acceptance of the downside of ADHD also helps you accept the upside. And, fortunately, in keeping with my theory that the nature of ADHD carries the seeds of its own cure, there are at least two wonderful upsides:

1) Forgetfulness can be a blessing when it comes to bad moods.

2) Some sparkly distraction will surely come along soon!

Blue Highways

So your child has ADHD. Welcome to a different country...now throw your road map away!

At a school where I was teaching about my book, The Bullying Antidote, the principal told me their special ed parents' club called themselves the “Holland Group.” I asked her what the name meant. She handed me a many-times-copied story that she had found on the Internet.

In 9th grade, the highway to success seemed clear. But when my son's organizational difficulties kept steering him off onto side roads, we had to find a new map.

“Welcome to Holland” is a 1987 essay by Emily Perl Kingsley that describes what it feels like when you learn that your kid has a disability of any sort. “When you're going to have a baby,” the essay says, “it's like planning a fabulous vacation trip — to Italy.” She describes in detail the iconic things one looks forward to in Italy — “The Colosseum. The Michelangelo David. The gondolas in Venice,” and how one learns the language. But when you get off the plane, you find you are in Holland instead.

It’s not that Holland isn’t a wonderful place — it is. There are windmills and tulips and wonderful people. But it just isn’t what you planned. And when everyone else is talking about Italy, well, you are sorry you missed it, but you wish they were interested in hearing about your trip to Holland as well!

Watching my son Enzo evolve in high school has been like getting off the plane in Holland. We chose a school with an engineering academy (which he loved), and a Paideia program (which I loved)...and started making plans (akin to driving a Lamborghini around in the Colosseum).

In 9th grade, the highway to success seemed clear. But when his organizational difficulties kept steering him off onto side roads, we had to find a new map. As it turned out, the new paths took him to some wonderful places, as Blue Highways (a term coined by author William Least Heat Moon to describe the back roads through America) tend to do.

For me, the strangest parts about being in Holland, or on the Blue Highways, are:

1. Seeing so many of his friends on the road to Rome they originally chose.
2. Managing the (ridiculous and unnecessary) resentment at their achievements.
3. Identifying with a “disorder” or “disability” in the name of self-acceptance when it’s just life, really.

Becoming an advocate and spokesperson for the "Blue Highway lifestyle" was an unexpected turn for me. But that’s the thing about getting tickets to Holland. Our new reality calls us as parents to step up to a new level, welcome the dazed new arrivals, and share our road maps.

Like Son, Like Mother?

No need to wonder where my son's attention issues came from. This apple fell from my tree.

"He definitely has attention issues, but he doesn't have ADD."

This is what the social worker told me after evaluating Enzo's questionnaires, filled out by myself, himself, his dad, and two teachers (one of whom gave him the label of "high priest in the church of no homework," whose class he barely passed).

Discussing all the problems and pitfalls, it was like watching my own childhood being replayed, and even my life now.

After all, said the clinical expert, he's well-socialized, he can sit still (sometimes for hours on end), and has a good opinion of himself. Of the five matrices that determine ADHD, he scored normal in four of them — but was way off the charts with attention issues. That was after the first report card of ninth grade, where in two years his 4.0 had dropped under a 3.0.

When his first report card of tenth grade appeared, Enzo's GPA had slipped considerably below a 2.0. Now we were desperate for some sort of help, or even just some insight, or a referral to another idea.

I went back to Kaiser and stormed the castle. "So, what do we do about attention issues, for goodness sake? How can I help my child?" The guy gave Enzo one more test, this one on a computer — why they didn't just do that in the first place, I don't know — and voilà: a full-blown case of ADD-PI. All of a sudden, the gates of support opened wide.

Within a few weeks, we were in the embrace of what I call Kaiser's ADHD School. I took a series of classes on learning disabilities, parenting practices, and coping skills. We learned about medications and chose one to try. Every week, Enzo and I attended a Teen Group with break-out sessions for parents to ask questions like, "What's with the lying thing?" "How can we stop fighting over homework?" and "Where did he get it from?"

Lightbulbs were going off like crazy in my own head about that one. Discussing all the problems and pitfalls, it was like watching my own childhood being replayed, and even my life now. (I don't have a GPA, but for all my cleverness, I do have a pretty unimpressive AGI.) I had to bite my tongue to keep the conversation on the kids.

I called Adult Psych to explore the possibility that I might also have ADHD. It felt like I could have taught the introductory workshop. I read Driven to Distraction and recognized myself on every page. I took the Kaiser tests...and guess what they told me?

"You definitely have attention issues, but you don't have ADD."

Keep Calm and C-C-Carry On

How our whole family learned to stop worrying and “C” our way through anxiety.

When Enzo was little, he loved doing sleepovers. But that all changed one year, the year he realized lying awake in strange place wasn't any fun. When he was about six, he stayed overnight with his Uncle Zoom, who had a new baby in the house. Between the distracting sounds and his underlying sleep challenges from ADD, he was up at 4 AM, dressed, ready for the strange night to be over.

He really wanted to go away to Science Camp with his class, but could not imagine how he would cope.

After that, he would become hyperaware of the fact he was lying there awake when his friends were dropping off. And then he would start worrying. He’d call to get picked up. Then he’d start planning not to stay over. His dad was sympathetic because that’s the kind of kid he had been. He could never sleep away from home, even if the whole family was with him.

This became a problem for Enzo in 5th grade, when he really wanted to go away to Science Camp with his class, but could not imagine how he would cope.

We signed up for a great class at Kaiser called the “Family Worry Class.” The therapist explained that the people who took the class all had a superpower called sensitivity, which runs in families. She gave us her “Five C’s” for handling anxiety while you’re in the middle of it. They work for your kids, and they work for yourself. In my words, they are:

1. Calm: Take deep breaths. Slow down and don’t rush through it.

2. Cheerlead: Be positive. Tell your kid they can do it — they’ve done so much before.

3. Change the Channel: A distraction can help, like food, a game, or TV; another option is to find ways to cope. (Look, another "C"!)

4. Check In: Let kids talk about their experience and how they're feeling.

5. Continue: Keep going, keep trying, don’t give up.

It was good to learn the therapist's Five C’s. We had been relying too much on our own favorite C’s: Criticize, Catastrophize, Cry, get the Creeps, and Chatter about endlessly about how bad it feels.

Thanks to the Five C’s, Enzo made it to Science Camp, and although he didn't sleep much, he felt very proud of himself. The C’s helped him in so many other ways, too — taking tests, going to a new school, and even trying sleepovers once again. Now he’s away practically every weekend, and can think about leaving home for weeks at a time. Maybe even for good! (We'll see how that goes.)

The other great thing about the class was that we went to go help our kid, and ended up helping ourselves as well.