Tuesday, February 2, 2010

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


  1. Cynthia, you're singing my family's song! My grown daughter (from my first marriage) and I are the family members without AD/HD. My husband, our two sons (ages 8 and 15), and my in-laws (who live with us) have AD/HD. And we suspect that our cat does too. ;-)

    You're so right that diagnosis and treatment for everyone is essential. We are all thriving; I have no clue how we survived the early--sometimes awful--years before diagnosis.

  2. Oh wow...this is great.

    I'm sure ADHD affects different families in different ways, but just remembering that it can, and will have an effect is the start of great things. I know that my life has changed for the better since diagnosis...and yes, this has caused conflict between myself and my parents (even though I'm a grown-up and don't live with them), but ultimately I think it's helping me to consciously shape a better relationship with them (I would bet lotsa money that they're both ADHDers too).

    As I move forward in my own adult life, I am (as I have written in my own blog, lol) totally in love with someone who is also an ADHDer. He and I both do therapy and our own various medications for ADHD and anxiety. So we're on an even playing field in that we both embraced diagnosis and are both totally into treatment. I think it's a great platform for a growing relationship...it certainly works well for us. And we really don't get annoyed with each other about our "ADHD" moments, if anything our tendency is to offer assistance, if we're able to offer it at the time, to the other person who may be having one of those challenging moments. Or just give the other some space, when space is what's needed to gather one's self after an ADHD moment. Perhaps it's just luck too, that our ADHD issues seem to often complement one another. When I'm high off my ass on an idea, he'll remind me that we're trying to finish something...and I thank him. When he's trying to leave the house for a gig and can't remember all of his stuff, I offer to be the keeper of the stuff as he gathers it.

    He also has three children, and the oldest two have already been identified as having ADHD. There are a lot of reminders about the importance of personal space, and the inappropriateness of pushpushpushing limits just for the hell of it :) Overall though, they're great kids...smart, energetic, challenging...you know, basically doing their job as kids...and as kids with ADHD.

    We (he and I) are both people who have found a certain amount of success in our lives BECAUSE of our unconventionality, not in spite of it...I'm a visible member of my community in many ways, and he is a working musician with a teaching day gig. We roll through our ADHD lives the way we always have...by focusing on moving forward, despite the frustrations. I think he's been a really good role model for his children in that regard. They all just keep rolling forward together, and I enjoy rolling with them.

    Both of us came from relationships where our ADHD tendencies were often criticized, and certainly not understood. I don't miss those days at all :) It's nice to be able to just be me, and I enjoy helping him to create space for the kids where they can just be them...whether "being them" that day happens to mean a nice quiet moment reading a book, or alternately, an afternoon spent repeatedly reminding a 5 and 7 year old to stay out of each others' personal bubbles, lol.

    It's all good. It's all just life :)

    And those moments where I notice that he's completely forgotten something that I told him five minutes earlier? It's so obvious that he really doesn't remember, that it doesn't annoy me and I just repeat it...and it gives me a moment to reflect on my own quirks, and be grateful that he truly doesn't seem to notice them most of the time, and finds them mostly endearing the rest of the time.

    Can't wait to see what happens when we finally disagree on something...I know it's coming sometime...but hopefully we'll be able to just roll with that too...time will tell...

  3. Thank you for sharing your experiences; it helps. As a mother who was undiagnosed for years, I especially relate to the inability to stick to the discipline system, though the "forgetting" rings a familiar bell, too. The columns in this blog often make me cry, both with relief, and with some sadness over how darn hard it was in the past (and sometimes still is.)

  4. This blog always raises my spirits. Sometimes the hardest part about my ADD is feeling isolated because, unless I'm making fun of myself, I don't talk about it.

    Today I feel devastated that my sons preschool teacher feels it's time to get him tested through the school district for an official diagnoses. Even though I knew it was coming I simply feel completely inadequate as a parent.

    When my husband and I got married we both acknowledged our ADD. Now that my funny wild and shining boy is suffering I feel enormously guilty for having children.

    I am sure this feeling will change and grow with me as I walk this path, and of course I can't imagine a world without my (literally) bouncing babies, but tonight is a tricky night for me. This post gave me a lot of food for thought, and most important, reminded me that I am not the first or last person to be on this journey. There is a comfort in that!

  5. I see a lot of books etc. about parenting ADD/ADHD children, but what about parents who have ADD/ADHD and are struggling? Those parents who don't have our disease have the emotional and finanacial resources to fight for their children. Those of us who are barely keeping our heads above the water are crying out for help, and yes, wondering if it was the right thing for us to bring children into this world who will suffer as we have. I am weeping as I write this.

  6. "Those parents who don't have our disease have the emotional and financial resources to fight for their children."

    Actually, you accidentally brought up an even more potent point. Even parents who have normal brains, especially single parents, stuggle emotionally and financially. In light of that it's even more important for ADHD parents to recognize their own hard work and give themselves a pat on the back! You deserve it! You are dealing with the already stressful task of parenting with an extra set of obstacles. Don't forget to give yourself credit for your hard work, and for the things that ARE working.

  7. Wow! This is remarkable(as you see,lol). This subject is something I have been thinking about lately. You did it again Gina!;). Perfect timing!


  8. Thank you for this. Sometimes it is so hard to not lose hope. 5/6ths of us are now diagnosed. The 6th refuses to be tested. My Parents were clearly ADD and more. It is so frustrating to wonder why I can't keep my house spotless, or why my kids wont hang up their clothes, or how we keep forgetting to shut the back door so the neighbors don't call and tell us the dog got out again. My youngest is 8, my oldest is 21. I lived 45 years before I was diagnosed. I can't mourn what might have been, I can only hope to make my kids lives a little better. Has anyone worked with an ADD coach in a family setting?

  9. Transitioning to adulthood: After being diagnosed with ADHD, learning disabilities and bi-polar disorder mid senior year in highschool, my daughter just graduated from college. She went to a great school with a learning effectiveness center for kids with Lds and ADHD and after a rocky few first years, finished strong after 5 1/2 years.

    The transition to adulthood so far has been a little rough. The structure of school and the support of the LEP program is gone. First, transitoning to a doctor happen a little late and she is still waiting after nearly a month to get her med prescription refilled. I am visiting now to help her with her resume, setting up a budgeting and bill paying system and helping her with an exercise program.

    She really needs a continuing coach at some level for awhile. Things may get better in a week when she finally meets with a general MD in the hopes that this person will go along with the med program she is on.

    Any ideas?

  10. Hi Natalie,

    Sorry I'm so late in getting to your question! I was hoping that another reader might have an answer for you.

    Part of the problem might be that readers are unsure (as I am) of your daughter's history with medication.

    A few months later, you probably have already worked out some solutions. But just in case, one key question:

    Did your daughter receive medication treatment when she was younger -- or just now? I'm not sure what you mean by "transitioning to a doctor." A new doctor? Or she's just now finding a doctor to prescribe medication for ADHD?

    I know that some parents are encouraged to avoid medication at all costs and to instead create lots of "support" for the child. This can work well for some children.

    But for others, the "hour of truth" comes when they have to function in the "real world" that has few of the supports they enjoyed throughout their school years. Then they (and their parents) learn that the child has insufficiently internalized the support.

    Otherwise, if that's not the case for your child, there are ADHD coaches who specialize in college students and transitioning college students.

  11. Sage asks if anyone has experience working with a coach in a family setting.

    I'd say that it depends on what you need.

    Coaches are not trained to be psychologists or psychotherapists. They are not qualified or licensed to assess or treat the often complex inter-dynamics affecting family life.

    On the other hand, if by "family life," you mean "domestic-task life," a coach might be helpful.

    For example, CLUTTER is a HUGE issue with ADHD-affected households. In that case, a professional organizer with expertise in ADHD can help you to set up systems that relieve much of your stress and anxiety.

    Some professional organizers also help kids and teens develop organizational systems that work for them (at school, in their rooms, etc.). So, bringing in neutral Third Party can often prevent much of the tension results between a parent and child who both have ADHD (and who are both organizationally challenged).

    A coach might help you learn to prioritize and organize your focus and energies. A coach might also help you to implement management systems for your household after identifying "hot spots."

  12. Wow, I can so relate to your story Gina! My husband and I are both recently diagnosed ADHD, even though we are both middle-aged and I have a son who was diagnosed with ADHD fifteen years ago. So much chaos, fighting, clutter, stress, etc. that we never, until recently, came up for air long enough to figure out why we struggled so badly to get along and manage family life. We both take medication now, which has produced remarkable change in both of us. We finally are on the same side and are supporting each other instead of resenting the chaos ADHD produces in a home. I'm even taking online college classes, something I would have said was impossible before. I encourage any adult who even suspects they have ADHD to talk with a qualified (big key!) professional, get tested, diagnosed and treated. You will be so glad you did.

  13. Hi RTM - Congratulations for climbing off that roller coaster and finding solid ground! And for taking those college classes.

    I agree -- a "qualified" professional is key.


  14. It's so validating to hear the restaurant story. Thanks very much for letting me hear again that I'm not the only one with that experience. I'm a stepmom; my DH and three dear stepsons have varying degrees of ADHD with varying degrees of denial / diagnosis. I'm one of the most orderly people I know ... you can imagine the disconnects we have had along the way, fortunately with a happy prognosis due to much help such as this.

  15. Thank you so much for posting this article! I am almost 48 and was just diagnosed with ADHD (& depression & anxiety) at 46. It is nice to know my family life is not totally uncommon. I have a 15 yr old daughter that I suspect that she has it, but have been challenged with finding an appointment for her with the right therapist so she can be tested. My husband hasn't been very supportive as he knows very little about ADHD and hasn't really tried to learn, but I also suspect not ADHD with him, but OCD. Talk about an argument waiting to happen! It is all we seem to do. But I am not giving up...it is sites such as this that help me get through the rough spots.

  16. Thank you so much for this! My husband and elder son were diagnosed 6 yrs ago with combined type, and my younger son was diagnosed with hyper-activity impulsivity type (no inattention) with mild OCD, two years ago. We are also a military reservists family so for years I have attributed our chaotic family life to frequent deployment and temporary single parenting all while working outside our home. Back in Kindergarten (late 70's), I was diagnosed with dyslexia and struggled through school and college. However, I always knew I wanted to go back to grad school, so decided to get tested as an adult for learning issues...and low and behold, Mom has ADHD (in-attentive type), too (no sign of "dyslexia" or any other learning disability)! This is a fairly new diagnosis for me, but at least I know where to find the resources I need. Still I was suprised, since I had spent 32 years thinking my struggles were something else entirely. This post was really what I needed today. Thank you! (and btw, my eldest son has diagnosed our dogs as having "A-ADHD", Animal ADHD, too :) )

  17. This posting and the comments speak to me. My son was recently diagnosed as ADD, and I suspect his father is ADD too. Our lives are chaotic and untidy, and there are days I feel I'm going to lose it completely because I feel i must "fix it". Yet we muddle through and there are days when I just look past the chaos and untidiness because that's the way we are. We cope - sometimes OK and sometimes not, but armed with more knowledge it makes things easier to deal with and accept.

  18. I am soo glad I stumbled acroos this blog! I have been saying for years, where are the books or the advice for the parents who struggle with ADHD and have children who has ADHD.

    I was diagnosed with ADD (now known as ADHD) when I was a child and also a reading comprehension disablity. Even though I was diagnosed as a child I wasnt treated for it. Unfort. my mother whom I beleive also has ADHD was against any medication for me. She felt like it was a plaque for her daughter to be medicated for something it seemed to be everyone was diagnosed for. Mind you this was in the early 80's. Anywho, my point for this post is- I have struggled with ADHD for 36 years and only recently I have decided I need help. I am currently in college, a single mother of 4 and trying to have my own business. WOW- Any woman who can do that with or with out ADHD is amazing some may say. but I say come on already-get with the program, why do I do make more work for myself then I need to.

    My two older biys also have ADHD and my youngest boy who hasnt been diagnosed but I am 100% sure he has it and the worst. My house is always in chaos. So I read (haha we think- she can stay focused long enough to read) well I skimm and skim some more. I read books about how to parent your ADHD child- routines, structure, stay calm blah blah blah. WHAT IF I CANT FIND ROUNTINES OR STRUCTURE OR STAYING CALM what then?
    How do I or How can I help my ADHD children succeed in life if I am constinitly struggling to stay on top of things?

  19. Hi there,

    That's a good question to ask! How can you help your children (who have ADHD) if you are constantly struggling?

    How is your business doing? If it's successful, good for you. If you'd like to be doing better, I wonder if getting a job would help add structure to your life. Owning your own business involves keeping your eye on a lot of pots, and also doing some tedious chores (accounting, etc.). It's not for everyone.

    You didn't mention if you have considered medication treatment. It might be the key towards establishing do-able routines and structure.

    No doubt you have heard this before, but you might be procrastinating on following through. That can be a Catch-22 around ADHD: symptoms themselves can form obstacles to treatment.

    It might be that trying medication can be the single-most effective strategy you can start with -- a foundation upon which you can build environmental strategies around routines, structures, etc.

    Good luck!


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