When ADHD is All in the Family

What happens when it's not just "you or me" who has ADHD but you, me, and a few of the children? (And maybe the dog, too!)

This month's post is written by Cynthia Hammer, MSW, an advocate who has long and admirably served the ADHD community in various capacities. She is currently an AD/HD coach in the Seattle area as well an avid bicyclist and mother of three. As a longtime fan of her work and her compassionately insightful writing, I'm honored that she agreed to share this essay with you here.   -- Gina Pera

We existed as a family for over 15 years before realizing some of us had AD/HD. How did we do it? Although life post-diagnosis and treatment still isn't always easy, I look back in wonder at what we went through in raising our children and maintaining a family life. Actually, a review of our life has been helpful as I say to myself, "You've come a long way, baby!"

In our family, the mother (that's me), was diagnosed with AD/HD along with my middle son (without hyperactivity) and youngest son (with conduct disorder). Our oldest son does not have AD/HD, while word is still out on the father. I have "diagnosed" him with AD/HD, but he refuses the diagnosis.

After I got treatment, I became more aware of my husband's "AD/HD-like" behaviors. They began to irritate me, whereas earlier I didn't even notice them. Other couples, where one is diagnosed and the other isn't, have told me this is a common experience. Like the reformed smoker who no longer tolerates even the smell of smoke, my improved self, who used to be blithely unaware of unaffected by the AD/HD behaviors in those around me, is now hypervigilant in insisting that they shape up.

My husband is now aware of his forgetfulness. Our oldest son recently commented that Dad has lost everything he owns at least once! He, laughing, acknowledges that this was true. However, he would rather believe he has early Alzheimer's disease than to think he shares our disability of AD/HD. I can't understand why he feels this way. So far, there's no good treatment for Alzheimer's while there are several effective treatments for AD/HD. At any event, it has become almost irrelevant. As I point out his behaviors that are AD/HD-like, he works to change them. Whether or not he has AD/HD, he is using coping strategies, sans medication, to improve his functioning.

My approach with my husband is probably not as sweet and benign as it sounds. I say something like, "Prove to me you don't have AD/HD by never being late again…by not telling me you'll be home in ten minutes only to appear one hour later…or by not planning to accomplish fifteen things in the next two hours while you sit there using up thirty of those minutes." Before my diagnosis and treatment, his AD/HD-like behaviors rarely bothered me. While I waited for him, I got involved in one or more projects, and I too had lost track of time!

I look back in wonder at what we went through.

Ignorance Isn't Always Blissful 

Some say that AD/HD in both partners can work very well, and in some ways that's true. Spouses with untreated AD/HD are generally very tolerant of each other's behaviors. They are too caught up in their own world to really notice or generally care about what's going on in those around them. Having little time for each other, not following through on commitments, making last-minute plans, or generally being a day late and a dollar short is a way of life for each of them, so the "fit" between them is pretty good.

I used to have a number of fender benders, but I never worried about my husband getting unduly upset, as he had his share of them, too. We learned not to make snide remarks about lost keys, as we couldn't determine who was misplacing them more often. We had a number of household sets but still couldn't find them. Now we have an improved strategy: He has his set and I have mine. (I think he still loses his more.)

The erroneous idea persists that if you are doing well in certain areas, you can't have AD/HD. Using society's standards and judging by external appearances, we were doing very well. Steve is a general surgeon and I have a master's degree in social work, but we were struggling, and I had no idea that how we lived our lives was more chaotic, disorganized, and difficult than for others. 

"The erroneous idea persists that if 

you are doing well in certain areas, 

you can't have ADHD."

Then the children came. Our first-born son did not have AD/HD. He was high achieving and capable. We thought we were great parents. We were therefore bewildered, stymied, and drained -- mentally, physically and emotionally -- by the two boys who arrived later.

What are some of my major memories as an undiagnosed AD/HD mother raising two undiagnosed AD/HD sons?

No Space of My Own

As a social worker, I attended a presentation intended to increase our awareness of what losses people experience when moving into a nursing home. The speaker asked each of us what space we had in our own homes that was our special place, a space that was recognized as ours alone, that no one would violate or intrude on.

I realized I had no place. Living with AD/HD children, there were no boundaries. I could tell them to stay out of my purse, my closet, and my rooms and to not use my possessions without first asking, all to no avail. I would knock before entering their rooms, they they seemed incapable of extending this courtesy to others. My husband and I resigned ourselves, begrudgingly, to this state of affairs, although periodically we continued to work on it.

"I thought more time and effort on 
my part would resolve the problem. 

But I just wasn't up to the 
kind of consistency 

and follow-through it required."

For our oldest son, their violation of his space and possessions cause continual family stress. He would get angry with us. "Why don't you do something about it?" As I write this, I wonder why we didn't get him a key to his room. Being naïve and idealistic, I didn't want to think one family member had to lock his room against two other family members. Foolishly, I thought more time and effort on my part would resolve the problem. But I just wasn't up to the kind of consistency and follow-through it required.

Embarrassed and Shamed in Public
When dining out, we'd order and then send the younger boys to do whatever they did. Otherwise, they would start fighting, verbally and physically, with each other as we waited for our food to arrive. When our meals were served, one of us would look for the boys and invite them back to the table. Invariably, they would have tales of how they found a quarter by crawling under the cigarette machine, how one hit the other and that in hitting him back, they accidentally hit another patron and had gotten bawled out, or how they left the water running in the bathroom sink and it was now spilling onto the floor.

My husband and I were fortunate in being able to afford babysitters so we could have time to ourselves. Years later, though, one sitter confided to me that she hadn't really been unavailable all the times we'd asked; she just hadn't wanted to sit for our boys because they were too much for her to handle.

Forgetfulness, Lack of Awareness, and Inconsistency 

There are probably numerous incidents of my sons forgetting things they needed to do, but the forgetting incidents I remember most are my own forgetting incidents. It has taken me a while to forgive myself for these "forgettings" and to share them. 

One morning, I dropped off my oldest son at preschool and drove off. Two hours later, I got a call from a school's neighbor. School was closed that day (I forgot), and my son had been sitting on the steps waiting for my return. I felt so badly for my son—what kind of mother could abandon him like that –and embarrassed that the kind neighbor must have wondered the same thing about me.

We knew we needed help with our younger sons and sought professional guidance. Although the psychologist didn't make an AD/HD diagnosis, he taught us behavior modification with a point system, dolling out rewards and punishments. I devised a wonderful system, fairly simple, where our sons could earn positive or negative points on a daily basis. The system worked great, and the boys' behavior improved tremendously.

One month later, I was again in the therapist's office. He asked me how the point system was working. I was dumbfounded. The system had been working well, but I was no longer doing it. And I had no explanation. I went home determined to try again. My renewed effort faltered within a few short weeks. My untreated AD/HD made it impossible for me to stick with a discipline system that required much organization and consistency.

I could go on but I think you get the picture. Those of you living with AD/HD in the family are not alone.

Now: Knowing What To Do, and Doing What We Know

At any event, in the midst of this turmoil, three of us finally got diagnosed and treated for AD/HD. This has made a world of difference. As Dr. Daniel Amen says, "If there is AD/HD in the family, everyone in the family needs treatment, or too much stress remains in the family system."

As one of our sons says, "People with untreated AD/HD know what to do, they just can't get themselves to do it." Everyone in our family has learned about AD/HD, and we are learning to do what we know we should do. We have moved beyond surviving, to thriving, as a family. I wish you well with yours.

                                                                                                         -- Written by Cynthia Hammer, MSW

Out With The Old, In With The....Wait, Do You Really Need New Clutter?

There Janet was, peacefully washing dishes one evening, when suddenly a loud thumping and banging sounded from the front walkway. The clamor continued through the front door and down the hall. Alarmed, she peeked around the corner with some trepidation.

The source of all the ruckus? Her 6-foot-3 husband Ralph, angrily wrestling the giant outdoor garbage-can-on-wheels through the narrow hallway. Directly into his packed-to-the-gills home office.

"After years of my suggesting that he clear the mounting debris, he finally took action," Janet explains. "But instead of taking his time to carefully sort through it all  -- for example, separating aged pizza boxes from working laptops, brand-new wireless routers from ancient modems -- he was furiously tossing it ALL in the garbage!"

What a sight to behold!  Normally a sweet-tempered guy, Ralph was finally fired up and fed up with the mess. Janet took safe cover in the laundry room until the storm blew over.

Ralph, in suddenly leaping from one extreme to the other (from "underdoing" to "overdoing"), provides an excellent example of how ADHD symptoms create problems in dealing with stuff.  To be sure, though, plenty of other ADHD-related traits can contribute to the pile-up.

In fact, you could say that ADHD and clutter is a match made in….well, not exactly heaven.  "Walking into my apartment feels like entering Dante's seventh level of hell," laments 53-year-old Steve, eliciting groans of recognition from almost everyone at our Adult ADHD discussion group in Silicon Valley.

Other group members chime in to say they often feel consumed by their clutter ("just looking at it exhausts and depresses me"). But do they always articulate this frustration to themselves or others, especially their partners?  Sometimes not. Perhaps because then they will be expected to do something about it. And if they knew what to do about it, they'd have done it already!

Now for the Partners' Perspective

Consider these sample reports from an online support group for the partners of adults with ADHD (sponsored by CHADD of Northern California but open to the public) and see if they resonate for you:

(Please note: I share them here not to be "negative" but to help break down barriers.  Many couples are bearing silent shame and sometimes loud resentment about the mess that is their home; most hardly suspect that specific ADHD-focused solutions can help pave the way to calmer cohabitation.)

• "Over the many years we've been together, I have developed an ability to not see things -- mess, stuff my husband is hoarding, his unfinished projects. I block them out of my consciousness. It's the only way I could cope. Otherwise, I was constantly nagging and he was arguing with me.  The downside was when visitors came to our house, then I suddenly saw things through their eyes and felt so embarrassed. Lately, I have been doing more myself to keep on top of it. It's hard not to be resentful that I bear most of the burden, but at least I feel better when the place is somewhat clean and orderly. I can think better, too."

• "The only way we've survived through 20 moves over 30 years is that I have always disposed of my husband's junk.  For him, it was always 'out of sight, out of mind.'  It usually worked, except for the time we ran into a guy on the street wearing his one-of-a-kind tattered flannel shirt.  My  husband poked me and said,  'Amazing! That guy has the same amazing shirt that I have.'  A few minutes later, 'Hey, that IS my shirt.'   Oops."

• "My wife buys multitudes of things because she's going to 'make a mint' selling them some day. Occasionally, she actually lists something on eBay but puts the price so high that nobody bids. Same with Craigslist. People call and offer very reasonable sums for the boxes of designer shoes cluttering the bedroom, but she wants full retail price. Is there something in ADHD that makes people over-value objects? She sees so much potential in junk and is constantly dragging all these 'great finds' into the house.  But I can hardly breathe for the 'unsold inventory'!" 

• "My girlfriend has a million 'creative projects' going at once and never finishes any of them. But she's afraid that if she puts them away, she'll forget them entirely. So every flat surface is covered, including the floor!

• Finally, from years of living a partner who has ADHD, Sheila analyzes the traits that seem to add to her partner's expanding flotsam and jetsam:

1. Afraid of losing something important.
2. Afraid of not making a good judgment as to whether something should stay or go (poor decision-making).
3. Special emotional significance of the object (if she holds onto her mother's rusted cheese-grater, she'll hold onto more memories of her mother).
4. Fear of being poor (if she has stuff, that means she's not poor; if she has stuff, then she can survive if she becomes poor).
5. No clue where to put the object (poor organizational skills and no sense for setting up structures).
6. Even when there's a place to put it, it's difficult to put the object away (little motivation for tedium; poor follow-through).
7. Out of sight, out of mind  (she needs to see her stuff; otherwise, she might buy a replacement!).

Helpful Strategies: From Chaos to Clarity

It must be said: People with ADHD often have the best of intentions about "getting organized." They load up on books, planners, software, and gadgets with great zeal.  Still, many seldom achieve sustained success. Why is that?

In part, it's because standard organizational strategies don't work for most adults with ADHD, say the authors of the book ADD-Friendly Ways to Organize Your Life (psychologist and veteran ADHD expert Kathleen Nadeau  and knowledge-management consultant Judith Kolberg, founder and former director of the National Study Group on Chronic Disorganization).   Simply put, these generic strategies fail to factor in ADHD traits such as inconsistency, forgetfulness, and a low threshold for tedium.

I've seen tech-savvy adults with ADHD plow through planner after PDA, always chasing the latest technology and organizational gurus. Trouble is, they forget to carry the planner or PDA with them, forget to refer to it, and frequently misplace it.  In short, they haven't implemented ADHD-focused strategies for using the darn things.

In their book, Nadeau and Kolberg offer many strategies for taming the disorganization. Central to the effort are the three S's

1. Support:
This is includes self-support (examples: avoid perfectionism by setting reasonable goals; replace negative self-talk with encouraging affirmations; recognize your progress instead of focusing on all that's left to be done).
It also means asking for support from friends and family or professionals, such as ADHD coaches and ADHD-focused professional organizers.


2. Structure:

Folks with ADHD get into trouble when they rely solely on "mental" structure – that is, trying to sort things out in their heads.  They gain better, much more consistent results by externalizing structure. Examples:

• Creating visual organizing systems (here's a great tip for keeping workshop tools tidy - creating "shadow" placeholders)
• Breaking down an overwhelming task into concrete do-able bits
• Establishing a step-by-step plan, etc.

3. Strategies:
Make that ADHD-specific strategies, of course, such as this sampling from the book:

•  "Organize for reasons that matter to you."

Shoulds and oughts aren't the great motivators for anyone, but especially people with ADHD.  Clearly identify how streamlining your stuff will benefit you. (Examples: Less anxiety, a more harmonious relationship, more room to have fun, etc.)

• "To get organized, get energized."

When she's tackling kids-room pickup, my friend and former disco-queen Patty summons motivation by playing her favorite dance tunes. (Of course Gloria Gaynor's "I Will Survive" is a favorite!) Bonus: Since both her young children have ADHD, they're learning from mom that chores don't have to be a giant drag.

• "Be a sprinter, not a long-distance runner."

"Being a sprinter means dividing up organizing projects into small pieces that can be completed, from start to finish, in one dash," say Nadeau and Kolberg. "That way, you're less likely to be interrupted, to tire of the project, or to become distracted."  For example, instead of organizing an entire room, focus on one corner or one set of drawers. If you find it hard to tune out the rest of the mess while you focus on one spot, follow an example shared in the book:  Cover it up with sheets!

• "If decision-making is not your strength, accumulating things will be your weakness. Always subtract before you add."

When it comes to everything from items to commitments on your time, follow this rule: "I won't add anything new until I finish or eliminate what I already have." (Managing time is a key component of managing stuff.)

• "Create a 'crisis' to stimulate de-cluttering!"
  
  The authors recommend a manufactured crisis as preferable to a real one.  In other words, create a deadline. Want that dining-room table cleared and the living room reclaimed?  Invite company over.
  

• "Reward yourself with experiences instead of things."

In a lecture I attended years ago, Dr. John Ratey shed important light on ADHD-related "shopaholic syndrome."  He explained that dopamine (the "reward" neurotransmitter) is released upon anticipation of buying something, not in actually having the thing.

This would explain the steady dopamine feel-good flow as eBay bidders anticipate close of auction and finding out if they've "won" a coveted item.  It would also explain why these coveted items often end up in the closet, unopened. The thrill was gone the minute the transaction took place. In other words, rewarding yourself with things is like a squirrel chasing it's tail: a never-ending game. And one that usually gives you something new to feel anxious about: mounting credit-card bills.

The Bottom Line

Sure, change can be hard. But for late-diagnosis adults who long ago exhausted their optimism on non-ADHD-savvy "get-organized" strategies, it's heartening to know: Informed strategies do make a difference.

So, if you've been procrastinating on heartfelt New Year's resolutions to curb that chaos, start now with a new attitude and a willingness to consider new habits, advises Holly Graff, a Sacramento-based certified-professional organizer who specializes in ADHD.  Most importantly, she advises, start NOW.  That is, with these three guidelines in mind:

N – No need for perfection.

O – Ongoing organization (not a one-time event)
W –Work in one small area or section at a time (30 minutes)

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Has ADHD-related clutter affected your relationships?  Please share your stories and your strategies. You're bound to find good company -- and at the same time provide support to others.


-- Gina Pera

Partners in Life, Partners in ADHD Awareness

You share a life together – maybe even a bed, a checking account, and human offspring, too. It might sound surprising (especially to some less-than-savvy physicians and therapists), but ADHD evaluation and treatment outcome also typically benefits from a shared "team" approach. Let's examine the reasons why.
 
Elaine finally decided to seek professional help for her long-ago diagnosed ADHD. But it still took her three months to actually book the appointment. Unfortunately, that therapist ended up knowing little about ADHD, and Elaine gave up on finding another one on her insurance plan.
 
“She gives up easily with most obstacles," boyfriend Brian explains, "and then she also quickly forgets why her ADHD is a problem -- until she loses her next job." For a long time, Brian didn’t push her because he didn’t like the idea of "acting like Big Daddy." Intervening just didn’t seem healthy.

The "Gifts of ADHD": Transforming Humiliation into Humility

A big obstacle faced by couples dealing with ADHD is denial -- that is, either partner refuses to concede that ADHD exists, that it is causing challenges, or that effective strategies truly exist.

The reasons for denial around ADHD are myriad and complex. For some who arrive at the diagnosis in adulthood, though, it's simple: ADHD feels like one more negative label, right down there with lazy, unmotivated, and careless. The temptation then might be to wholly reject the label and instead cling to a more "positive" spin: ADHD is a gift. In this month's guest post, San Diego-based psychotherapist and ADHD expert Lew Mills, Ph.D., MFT (pictured below), offers a nuanced way to reconcile "gift" and "disorder."

(To learn more about denial's psychological and even physiological foundations, check out the August and October 2008 issues of CHADD's Attention magazine, which excerpt my book's chapters on the topic. If you missed these issues, remember that CHADD members can access an online treasure trove of past Attention articles.)

I  look forward to your comments!  --   Gina Pera


You can always start a debate amongst a group of people with ADHD by asking whether ADHD is a "disorder" or a "difference." Is it a curse or a gift? It's everyone's favorite topic, and everyone has an opinion. Actually, I have two opinions. Like many big questions, the answer lies somewhere not just in the middle but at both ends.

Is It "Miscommunications" – or ADHD?

With a warm smile and a kiss, Diane welcomed fiancé George at her front door and then noticed fresh mud on his shoes. In a pleasant tone of voice, she asked, him to please leave his boots on the stairs? Puzzled, he said, "Your suits stare? Huh? What do you mean?" 
Despite her clarification, George remained convinced that Diane had said exactly that. Moreover, she'd said it with that tone (presumably, the disapproving kind).

It wasn't this pair's first tangled communication. In fact, it happened so often, George had his hearing checked but it seemed fine. Their couples therapist suggested that George might bear deep-seated psychological resistance to listening to Diane.

Can You Hear Me Now?

Fortunately, George's ADHD diagnosis came just as these "miscommunications" reached fever pitch. He and Diane felt relief when the cognitive therapist explained how ADHD has a common traveling companion called Central Auditory Processing Disorder (CAPD). Briefly, it can cause a person to misinterpret content and even tone of voice (more details about CAPD in a minute).

The therapist provided the couple strategies for enhancing communications, noting that stimulant medication can often help "strengthen the signal."

ADHD and Sex: No Shame, No Blame

"Gina, sex is difficult for people with ADHD; it's tough to stay focused!" says a female Facebook friend, responding to my query on this topic.

What, you say, ADHD affects sex? Who knew? Yes, it's one of those areas, like sleep, where we often fail to connect the dots to ADHD symptoms.

The truth is, ignorance about this critically important connection creates so much unnecessary hurt. Left with no other rational explanation for intimate difficulties, partners sometimes blame themselves—or each other. In a blog post on Sex and ADHD at Jeff's ADD Mind, the author first considers it as the “problem with no name” and finally “the problem that carries a lot of shame.”

To Sleep, Perchance to Turn Off That *&$@# Computer

Being new to the area, my husband and I got lost on the way to our first adult ADHD discussion group in downtown San Francisco. Some heated bickering later ("You said to turn left!" and "I didn't mean that left!"), we finally arrived and caught our breath. That's when a worn-out looking man across the table said something that sticks with me, ten years later:
"I've blamed a lot of people in my life for my troubles, but when it comes down to it, I finally realize that I am my own worst enemy. For forty years, I've not only opposed what other people want me to do, I've opposed what I want to do."

We've all heard that adult ADHD can create problems in relationships, but this man's epiphany struck some foundational truth: Having ADHD can create problems in your relationship with yourself, never mind someone else.