Queen of the Distracted

Imagine life in a house with 6 kids - now imagine if 5 of those kids and their father have ADD/ADHD (Attention Deficit Hyperactivity Disorder) - that is our house! Welcome to an inside view of my life and our home dominated by ADHD... THERE IS NEVER A DULL MOMENT!

Ladies and Gentlemen! Boys and Girls!

"Ladies and Gentlemen, Boys and Girls!"

Those were our oldest daughter Rachel's first words, from the time she was a toddler she would belt them out proudly standing on the arm of the couch. At the time we had no idea what ADHD was or that it would play such a central roll in our lives.

Since then we have learned a lot, not the least of which is how many individuals and families suffer in silence. We have experienced first hand how misunderstood and misrepresented a disorder can be.

As a family we decided to take action - to risk embarrassment and labeling to get this important message out to the world. Come join our family, share in our lives, and see ADD/ADHD as we see it...
A gift with a heavy price tag.

WELCOME to life in the ADD/ADHD House!

Showing posts with label self esteem. Show all posts
Showing posts with label self esteem. Show all posts

Monday, November 26, 2012

An Inheritance from the Distracted King - Mastering Hyperfocus

Besides inheriting their ADHD from their father, the Distracted King, our children are benefiting from his years of experience and the many coping mechanisms that he has found to pay the heavy price tag of ADHD and open the great and marvelous gifts which it offers.

The King and I were talking today about hyperfocus, a quality of ADHD that can easily hijack the mind making it easy to get lost in ideas, creative ventures, and activities.  The conversation was inspired by a wonderful blogpost I read written by Zoe Kessler for Psych Central called A Hyperfocus Balance Sheet: Is Hyperfocus Worth it?  A wonderful breakdown of pros and cons to hyperfocus.  In the discussion the King said he considers hyperfocus one of the greatest qualities he gains from his ADHD.  It has taken a long time to get the balance just right, to master it rather than it controlling him, but now it's an asset that he uses in many aspects of daily life.

The benefits to my husband and our family are really hard to quantify but I have pinned down specifics of this sizable inheritance beyond the obvious financial benefits we have gained from his successful career.

The King has taught them to use hyperfocus to accomplish an unwanted, even hated task.  One of the hardest things for the ADHD mind to do is focus on something boring, uninteresting, or undesirable.  Unfortunately life is full of such tasks. Right now, for our kids, school is full of such tasks.  The King uses something that his mind wants to hyperfocus on as a carrot to get through the mundane and irritating.

We have a son, now a freshman in high school, who is a grammar freak.  Until we had him diagnosed with ADHD and medicated in the 1st grade he couldn't remember his alphabet. Then, like someone turned on a switch, he started reading.  Within a couple of months he was reading at a 6th grade level and much to the chagrin of the teachers and office staff he was correcting the spelling and grammar of the school newsletter and returning it each week.  Now this same son had to read a book in honors English, House on Mango Street.  It has been several months and he still randomly breaks out into rants about how horrible that book was to get through.  Why?  It has no grammar at all - just one run-on sentence.  The boy who can sit down and read a 400- 600 page book that he wants to read in a day or two was struggling to get through a page.

With the help of his father he learned how to hyperfocus on the task he didn't want to do so he could get to the one he wanted to do.  Reading chunks for the reward of reading chunks.  Important to note that you have to set limits on your pleasurable hyperfocus or you will easily get swept away.  In this case it was pages or chapters, sometimes it minutes or hours.  Today he used those same skills to write an essay for the same class.  Each time he uses the skills he is learning about managing his focus and engaging the ability to hyperfocus he is able to do more and more on his own without the Kings help of guidance.

The King has taught them how to establish a state of hyperfocus, how to get into the groove.  Getting into that hyperfocus state of mind is easy when it's where your mind wants to go but when it doesn't want to go there it can be very difficult.  The King has certainly proven it can be done.  He has also passed the process onto our children. Recently we found out we had to move, the King took one of our daughters out to the garage, surveying it he said to her, "Mary, I need to know what is in this garage.  I need someone who can get lost in this job."  Other than a few parameters he didn't tell her how to do the job. She strung up Christmas lights, found an old boombox we thought was dead forever, fixed it, blasted music, created a system for finding and cataloging everything in the garage, and went to town.

As each day passed she employed the first lesson listed above by doing other chores that needed to be done and then headed back to the garage.  The King is still teaching her the lesson, helping her learn to take breaks, praising her work and progress, helping her see the value of the time and effort she is putting into the task, and satisfaction of finishing a long hard job.

Important to note that the King didn't dictate how she got into the groove of hyperfocus, that is a very individual process that changes for each person and each task.

The King has taught them there is a time to stop - pull yourself from the groove and pay attention to other things in life.  It took the King years to learn this and personally I would like to think that I had a little something to do with it.  Just like he would go out the garage to help Mary learn to monitor and balance her ability to hyperfocus I have helped him, over the years, to see when he was loosing perspective.  This has probably been one of the harder lessons to learn but he has really come to a place of where he can pull himself from that hyperfocus state and enjoy the world around him.  Having both the ability to put yourself into that frame of mind and take yourself out of it allows you to use it daily, finishing  small projects and making marked progress on long ones.

Part of learning it and teaching it is learning to recognize what you need and what those around you need.  While getting his focus ripped out from under him is hard - he even describes it as painful, he has learned to communicate it and teach ways to cope with it to our kids.  Being self aware and being able to express it to others helps them understand where you are coming from and what they can do to help.  He consistently includes them by asking them to look at something he's working on and for their critique.  When our rather random house is firing distractions like a war zone he asks for their help in keeping his focus.  He often says I can't think about that right now but let me get to this point in my work and my attention is all yours.

The kids have become very good at being equally self aware and expressive.  As they vocalize their struggle between what they need to be doing and the multitude of ideas that flood them we can help them manage the way their brains work while they learn to manage it themselves.

Most commonly we see this manifested in the uncontrollable need to write down an idea, record a melody, or draw an inspired picture.  He has taught them to jot down notes or record ideas quickly and then get back to the required task at hand.  He has taught them that even though it is hard to wait they can.  They can remember the inspiration and act on it in the appropriate time.


The King has taught them that you can include others in your hyperfocus state, making it not such a solitary quality.  Their are aspects of his job that are not very inclusive.  We can't all sit around and edit a film or draw the same picture.  He includes us in the source of his hyperfocus by including us where he can.  More than just asking our opinions he has pulled us into his world and activities.  When he worked on a film a couple of years ago our family became intimately involved.  Our older girls were production assistants, the younger ones acted as extras, we were often on set if nothing else just to watch and be there with him.  We write stories as a family, make movies, deeply discuss art, literature, and music.  He proves all the time that hyperfocus does not need to be a solitary place, in fact it can be very inclusive as we look for ways to share our joys and obsessions.  Many of our fondest memories revolve around getting lost together in a wonderfully creative world come to life.

It has passed along to our children and they are know to come and share their inspiration with us and involve each other in their creative endeavors.  Fernando asks Hannah or Rachel for drawings of characters for his story, Mariah has Rachel help her with lyrics and has her sing her songs, Rachel takes lyrics to Mariah, they help each other with plot ideas for stories and movie, they share and pull others into their process.

The King as taught them that there is a satisfaction that comes in finishing, a confidence that carries you through to the next hard thing to conquer that requires the ability to hyperfocus.  When our daughter Mariah was about 15 she was already heavily into the world of composing music.  I think she fell into that world from the moment she took her first music lesson at 7 years old.  At 15 he had a tall order for her though.  He needed a song written for a movie he was working on - one that she could write and she and her sister could perform.  A song that would play during a movie scene where one of the characters, a young gang kid, is considering suicide.  He pulled her into his hyperfocus, spinning her off into her own.

It was a hard thing to do, she had to use all of the skills mentioned above to complete it. She had to pace herself and find balance using hyperfocus on a consistent basis to complete a task.  She had to put herself into that hyperfocus state when she didn't necessarily want to finding a process to do that, a place to best work, set the mood for herself.  She had to communicate when she needed help following inspiration because it finally hit.  Often she had to find ways to hold onto the inspiration and set it aside until she could work on it at the appropriate time and place.  Sometimes she needed help pulling herself from that place back into the flow of life.    It wasn't a song she ever would have written on her own, it was dictated by the script and mood of the film at that moment.  But she did it.  How priceless is the knowledge that you can apply yourself to a task that isn't what you would choose to do, one that is hard and painstaking, and you can finish with high praise.




ADHD is a life long disorder, the way their brains are wired is not going to suddenly change. They will struggle with how to manage and use the qualities of ADHD to some degree all their life but every bit of ground they gain, every bit of understanding, every tool they acquire changes what their future looks like.  They are fortunate that the Distracted King is there to lead the way, that he embraces his strengths and weaknesses and strives to show them that they can work on them everyday because he works on them everyday.  In the end is there really any inheritance more valuable than that.

*The song, Smoke and Mirrors, is written by Mariah Aro with help from her sister Rachel and performed by Rachel Aro with harmonies by Mariah.

If you like this post or have found it helpful please share it with others!

Tuesday, October 16, 2012

BRAVE - Embracing Your Inner Mother Bear

©2012, All pictures are the property of Disney/Pixar

We had anticipated its release for months, watched and re-watched the Brave trailers and teasers, planned what our excursion to see it in theaters would be like. Then we found out that, my husband was going to have to be out of town for the memorial service of his beloved uncle when the movie was released. We, ourselves, would have to be brave. We would wait for him to get home to see it.  Then his wonderful aunt stepped in with a solution. 

She sent tickets for us to go see the movie here while she and Mark would see it there and then we would Skype about how absolutely wonderful it was.  It was perfect.  Perfect, except that by the time we sat down in the theater I had been single parenting it for nearly a week. Yeah, I have a couple adult children but I will remind you that all of them have ADHD so they really aren't always 20 and 18 years old - they're on occasion, most occasions, more like 17 and 15 years old.

That day we had endured the accomplishment of chores (used the movie as a motivator), scorching Central Valley heat with no air conditioner, a trip with seven kids into the store to get movie treats (that's right I took seven indecisive kids into the store for treats). Not to mention trying to get from the entrance of the theater past all the distracting movie posters, video games, shiny lights, and survey-takers to make it to our screening. I had mediated arguments, consoled candy woes, redirected and redirected and redirected again, reminded pretty much everyone what socially acceptable behavior was repeatedly.


Finally, the screen darkened, the movie played, and I watched as the beautiful faces sitting down the row from me lit up with excitement and wonder. I took a breath, a deep one, I made it, and it all looked promising. Then I watched the movie... Wait a minute! This was my house on the screen if you multiply the fiery redhead a couple times and add another brother or two. Even the kids kept nudging me and whispering, "It's US!"  And the mom, the one constantly trying to keep order, teach social etiquette, and help her daughter grow into the wonderful powerful leader she knows she is going to be...me.

Suddenly, I wasn't so sure I wanted to be in the theater anymore. It wasn't the magical escape from reality I was expecting...it was my life!  And then the mother got turned into a bear. Really!? I smiled and nodded through Skype. Later, I would confide to my husband that the jury was still out on this movie for me. I would somewhat tearfully tell him that I was ready for him to come home.

Since then I have thought a lot about it.  I am that mom, I am a mother bear when I need to be, and I am okay with that. 

As parents of kids with ADHD or ASD or SPD or LDs or some combination thereof (and more), we don't have the luxury of not engaging in mother bear parenting. Our kids are brilliant but it takes a mother bear to uncover that brilliance so the world can see what we see easily.

We mother bears research disorders setting aside pleasure reading for books like The Out of Sync Child has Fun, Attention Deficit Disorder: The Unfocused Mind in Children and Adults, and Overcoming Dyslexia. 

We mother bears tell social stories, teach our children how to recognize when they're getting overstimulated by using number and smiley/angry face scales, we teach self-advocacy, right the world when it's unfair and unbalanced (which is nearly every day). We console children who know they're different from their peers who recognize that they will never get an award for staying on task, keeping a clean desk, turning in all their homework on time. 

We mother bears fight back very real demons like self-doubt and inadequacy. Sometimes those demons creep in on the heals of well-meaning but misinformed adults who don't understand the harm their looks, words, and actions can do. We stand between our children and those who don't understand, no matter who they are, sometimes even family, to advocate and educate.


We mother bears are up all night with kids who fight insomnia, depression, anxiety. We are at the school helping mediate in the classroom, we are in the principles office, at 504/IEP meetings often feeling guilty and accused when really we are just trying to protect and help what's ours.


We mother bears laugh at the comedic brilliance, at silliness, and uniqueness. We see greatness in our child's perseverance, diligence, and endurance. We glory in every bit of progress we see and trust me, we see the most minute bits of progress as huge steps. We see potential when the world sees trouble.

You know, I would rather be a mother bear than anything else in the world.  In some respects, I am here to say bring it on! This mother bear is here to stay. Because at the end of the day, like at the end of the movie, I know my kids recognize how important it is for me to be their mother bear. How do I know? My daughter has set a date for us to go see Won't Back Down. She says we have to see it together, "Because it's about a mom that takes on the school for her daughter, just like you."




Sunday, October 14, 2012

Our ADHD MESSage

I was sitting, waiting to get my hair cut, flipping through magazines for the perfect haircut when I saw this fantastic saying jump out at me from the sea of text and pictures.  "Turn your mess into your message."  Just then my name was called, I closed the magazine, got up and walked off.   I have no idea what magazine I was reading, no way of figuring out what brilliant person made that statement.  Those words have lingered, I haven't been able to shake them from my mind.  So, I decided to use it anyways because turning our mess into our message is what Queen of the Distracted has always been about.

Here we are, a family of nine. Myself, my husband, and our 7 kids.  That right there freaks most people out.  Then I tell them, but wait, that really isn't the messy part.  The messy part is that fact that my husband and 6 of those 7 children have severe ADHD and we seem to be doing our best to cover almost every co-occurring condition possible.  Sometimes reaching opposite ends of the same scale.  We have, for example, members of our family with sensory processing disorders.  In some strange twist of fate we have both those who are super sensitive to sound and one who is under responsive and tends to be very loud.  We have dylexics and I am pretty sure we have some undiagnosed hyperlexics.  

Regardless, of the labels and disorders we are a family doing our best to raise good children into fully functioning great adults.  As we started to walk down the path, discovering all these unique characteristics about our family, we found some things we didn't like.  We found stereotypes, myths, a lot of misunderstandings, and misinformation.  We seemed to be walking the path all alone, even though we knew there were many families like us dealing with similar issues.  Somewhere in between appointments at the psychiatrist for one kid or another and dealing with distraction, impulsivitiy, meltdowns, creative genius, and the need for constant positive stimuli we landed at a crossroads.  Do we keep living our lives, managing and growing our family all to ourselves or do we share our journey with the world and hope that it helps others as they work their way through life and their own unique challenges?

The answer was undeniable, we would share our lives in hopes that other families could find refuge in our struggles and triumphs.  In hopes that others wouldn't feel so alone.  In hopes that many could understand ADHD from real life place instead of technical scientific terms.  In hopes that they could find empowerment.

I am always grateful for the compliments people give me regarding the blog.  It keeps me, a rather private person, continually inspired to keep posting.  I appreciate everyone of those acknowledgements.  Today, though, I have been thinking about some unexpected gifts that have come to our family by sharing the antics, good and bad, with the world. 

Removing the shame and embarrassment of ADHD

I remember visiting with a friend at a reunion and as she spoke of her son's mental health issues her voice lowered to a whisper.  What she didn't know was despite her whisper he heard his name and attuned his ear.  He realized he was the subject of a hushed conversation.  She never saw his face but I did.  To me his face read shame and embarrassment.  She meant to talk in hushed tones to respect his privacy but in the process she inadvertently sent a message that his situation was not one to speak openly about.

It is important that our kids, no matter what they may struggle with (and everyone struggles with something) never come to a place where they feel that they are broken.  I don't care who you are, what your trial is, we all need to feel empowered to be successful.  If we teach our children, directly or inadvertently, that they're broken then how are they supposed to fight to overcome their challenges.  In addition to controlling the message that we give our children we have to fight the messages they get from their peers, from other adults in their lives, from the world.  It's a constant battle.

One way that our message has influenced our mess is by letting our kids know that we are not ashamed of them, that their disorder is just a challenge and that as they work on it they will learn to manage it.  It has been a forum for us to show our children that challenges are just stepping stones to success and to show them that their are many aspects of their ADHD that make them fantastic people.

Growth through self-examination and communication

It was my husband, Mark, who pointed out that the blog has helped us to use our experiences for growth.  We discuss what I write about on the blog as a family all the time.  It gives us the opportunity to break down different situations and rework how we might handle them differently.  That communication is a hallmark in our home and has had the most influence on how our kids are turning out.  In fact, we communicate so much with our kids that it often freaks other people, especially their friends, out.  I can't tell you how many kids have come through our home and said, "You talk to your parents about that?" in bewilderment.

All kids, but especially ADHD kids need to talk things out.  They need to understand how things work and why they work certain ways, it helps them to control impulsivity that is central to the disorder. We sometimes joke about the different phrases our kids approach us with that mean we're in for a long night.  "I have a question," "do you have a minute," "I was wondering," all mean I need help setting the world straight and understanding things that totally escape me.  I think during a couple of one daughter's more difficult years there wasn't a night that we got to bed before 2:00am. However, I wouldn't trade it for the good nights sleep, she landed square in the middle of some deep potholes on her path, but avoided many and I'm sure she avoided some situations that could have led to legal trouble all because of those late night talks.

There is so much that we've been able to help our kids through because they're used to communicating with us and are able to come to us for help in coping with situations and conflicts.  There is so much that the rest of the world takes for granted as innate understanding that ADHD kids and adults have to work at understanding.  It's our job as parents to help them learn those skills; communication is key to learning as is being able to deconstruct situations. 

Our message has given us a great tool for using our mess as a teaching tool.

ADHD awareness turns into self awareness

ADHD is tricky, though it's underlying causes are the same, the way in which it really manifests itself often varies, it's completely individual.  For example all of my ADHD kids and my husband struggle with inattentiveness but there struggle looks different from the outside.  One child embraces that inattentiveness entirely and really doesn't stress about it at all.  Another obsesses about it and quadruple checks everything.  One should be more concerned, the other should relax more. 

Understanding how their brains are wired, the experiences they are having, gives them a platform from which to dive into managing it.  They each have to be aware that they are inattentive, or impulsive, or whatever quality they're struggling with at the time and how that manifests itself in their own life so that they can figure out ways that work for them to combat it. 

Our message shines a spotlight on our actions, encourages self awareness, self acceptance, and growth.  Our message helps us acknowledge and manage our mess.

I had a dream the other day that we were living in one crazy apartment complex where our kitchen window, which had no glass in it, opened up onto a thoroughfare of complex activity.  When that window was open people could see straight into our kitchen, they watched what was happening in our house, freely would stop by and visit all while gazing into my kitchen.  My kitchen is never clean, despite heroic, monumental efforts, it's never totally clean.  I felt a little awkward with my messy kitchen hanging out there for all the world to walk by and see.  No one mentioned the mess.  That's not why they stopped.  They stopped to be apart of our family, to share in our love and acceptance, to become a part of our mess and our message.

I am fairly sure I had this dream because I am going to be on a local television station tomorrow to talk about ADHD Awareness Week.  I'm nervous.  One thing that our message has taught me is that from our mess there is a valuable message shared.  One that can only be shared by making ourselves a little vulnerable and honestly opening our lives to other.  Truth is, the risk is worth it for us, for our children our message has changed how we handle our mess for the better.

In honor of ADHD Awareness Week I am going to be posting daily, make sure you check back for the latest.  At the end of the week our family has a big announcement to share with you!





Monday, October 1, 2012

Role of a Parent in the Pursuit of Passion and Talent

I am not a soccer mom, I appreciate them, especially those that have their kids in year round leagues.  I admire their dedication to braving the elements, cut up oranges, Gatorade, and driving.  It's not that I wouldn't ever be a soccer mom it's just that my kids have never leaned towards those kinds of activities. In fact, I did a little time as a volleyball mom and little league mom.  I was almost a track mom, then my daughter came home totally disillusioned, "Did you know that you have to RUN in track?" I did, but apparently she didn't, what a rude awakening that was.

I am an art mom, art, film, acting, music, and almost any creative endeavor mom. I step over painting supplies, pick clay out of carpet, yell at those who would bump the camera, table or lights set up for stop motion.  I sit on set intolerably long periods of time, watch clips as they're edited together, give opinions, and ooh and aah at visual effects.  I read newly written poetry, short stories, and listen to endless ideas for future poetry, short stories, novels, film, and animation ideas.

Last night I caught my 14 year old son as he got out of the shower and told him he needed to remove the mascara raccoon eyes before bed.  That's a conversation that I never expected to have.  He's in his first stage play.  He's done some local commercials and short films but he's never had to wear heavy stage makeup before. 

Our kids, these amazing souls, are in our care as they develop. We, as their parents, have the responsibility of helping them discover who and what they are.  It's an important job, a hard job.  In fact, as parents, we set aside many of our own needs to make sure that we can help our kids develop in a healthy way.  When you have children who are wired differently, alphabet soup kids ADHD, ASD, SPD, ODD, or any of the other many disorders that change the way the brain receives, processes, and reacts to information everything we do as parents becomes more vital.  Helping our kids find and pursue their passions becomes even more critical to their development now and in their future.

Interests, obsessions, passions are not always where their natural talent lies.  Our oldest daughter wanted desperately to sing, over the years we worked out ways to get her vocal lessons.  To almost anyone who heard her sing early on this might have seemed like huge mistake.  As even she will tell you, she was awful, painful even.  But in pursuing a talent she wanted but was not naturally gifted at she learned some very valuable life lessons like dedication, perseverance, work ethic, sacrifice.  Recently, she was talking to one of her siblings about success, she was quick to remind him of how horribly she sang at first, how vital constantly working at what you want to be successful at is, and how it all turned out for her.  She has an amazing voice now and the life skills that she has learned getting that voice are not lost on her.  She understands how to set and achieve a goal.

at home ALWAYS "on"
Encouraging the pursuit of a passion can be hard, especially when dealing with the uniquely wired, because interest almost always equals obsession.  Obsession almost always equals being followed around day and night by a child who is absolutely fixated on one particular subject spouting facts, quoting, rehearsing, singing.  It takes a lot of patience to take in all they may be putting out.  Our now amazing vocalist, for example, sang nothing but Phantom of the Opera for a whole summer, 24/7.  She sang it so much that we weren't sure she actually talked at all that summer.  She sang it so much that her then 4 year old brother went to preschool one day, picked up his teachers hand and broke out into song, "Think of me, think of me fondly when we've said goodbye remember me once in a while please promise me, you'll try..."

It is tempting, as parents, focused on our children's future, to think only of whether a skill is going to be useful to them as an adult.  I remember a friend who was horrified by her 7th grade daughters ninja obsession.  She wanted nothing more than to shut it down.  It was an obsession shared by my daughter, her best friend.  According to the other mom I was not nearly horrified enough.  They read on the subject incessantly, they drew ninjas, watched ninja movies, even learned some marshal arts.  I wasn't worried about it, I knew it would pass but when I talked to the other mom she was afraid that if she encouraged it, if she didn't squash it immediately, that it might be all her daughter did with her life.  While it is true that our children, in the pursuit of their passions may stumble on what they may do for the rest of their lives most likely they will just explore many ideas, activities, hobbies, that will be fond memories and life lessons but not career paths,  As I told this mom, I feel safe in saying that neither girl would end up a ninja.  I was right.

In some cases, however, they may find their future.  That's not a bad thing.  Especially for kids with ADHD and other similar disorders, finding a career they are passionate about increases their chance of success as an adult.  The ADHD brain does not do well when it is bored, it does exceptionally well when it is stimulated by something it loves.

I watched my son on stage the other night, his lack of inhibition (fueled by his ADHD) filled the room as did the laughter when his physical comedy stole the show.  I saw him buzz with the exhilaration at the audience reaction.  It was his first stage play, he had never had a live audience to feed his energy before.  I saw his confidence swell.  He found a niche, certainly a passion. 

For kids that fight everyday to remember and process what they are learning in class, to remember to put their name on their papers, to remember to turn in their work, who feel different from their peers, who know they struggle to keep up and to fit in; finding their passion, their talent, their niche provides a critical sense of success and accomplishment.  It gives them a balance to their struggles, an edge, a path to success in the future. 

Will he be the next Jim Carey as the family in front of us proposed?  I don't know and for right now I don't care.  This passion is giving him insight, teaching him skills he will use in everyday life, building confidence, teaching dedication, work ethic, sacrifice, team work, and most importantly opening his eyes to his own possibilities.  We will support him in the pursuit of anything that teaches those lessons, brings him to that sort of positive place.

And at the end of the night we will laugh when his 4 older sisters try and help him get the mascara off while lecturing him on his new found appreciation for all that girls do to look beautiful.

* special thanks to my kids for collecting all the art and writing stuff in the picture and to Mary for taking it for me

Wednesday, August 29, 2012

Stigma and Stereotypes: The Lessons We Teach Inadvertently

Yesterday was crazy, which I expected.  One of our sons has a strange protruding spot in his ribcage that we've been trying to figure out since February.  Nothing showed up on x-rays, nothing really by examination, but when our psychiatrist ordered a routine EKG our son's doctor thought she might have found the answer.  She thought his heart might be backwards.

You can imagine this totally tickled the ADHD minds in our house.  Especially my son who has named the protruding spot, his alien chest baby, 'Lil Elmo.  We were off to the Children's Hospital in our area where we would spend hours doing a new EKG, waiting, having exams, talking medical history, waiting, and eventually having a sonogram of his heart before getting an clear answer.

All that waiting meant lots of children's programing on every TV in every waiting room.  It made me long for the days of Between the Lions, Sesame Street, Dragon Tales and the other programing of my kid's youth.

In the end we were stuck watching a pseudo-interactive magical word fairy tell stories and teach sounds all with an underlying life skill lesson.  I was tired.  I was hungry.  I was cranky.  And when they started to tell the story of the magical porridge pot illustrating the importance of listening I became mother bearish about the implications.

I actually remember reading the story as a child. This was not the same story.  This was an absent minded, distracted girl whose father gifts her, for no apparent reason, with the magical pot.  Gives her instructions and leaves.  She, of course, floods the house because she was not paying attention, she did not listen, as she was supposed to and couldn't remember how to stop the pot from making porridge.  Listen was the word of the day.

The cranky, hungry mother bear in me saw this as a continuation of some dangerous stereotypes about inattention.  I suppose I saw in this little peasant girl as my oldest daughter.  We had no idea what ADHD was back when she was little.  Every teacher seemed to negate our concerns about ADHD by telling us that she was sweet and meant well.  She couldn't be ADHD because she wasn't disruptive; she was dreamy and creative.  If she could just try harder to pay attention, to listen, she would be fine.  She was the little peasant girl.

Stereotypes and stigma can be dangerous and this show seemed full of them.  First, that kids who don't pay attention do it intentionally.  They are irresponsible, ditzy, and therefore end up being destructive. Second, that if they wanted to, if they understood or respected the importance of the information, they would pay attention and listen. 

Neither of these are true.  The danger of portraying inattention (ADD/ADHD) in this manner is that those who suffer trying to maintain focus, pay attention and fail: not because of their intentions, their desires, or their intellect, will view themselves as broken because they can't remember simple instruction.  Our little peasant girl is 20 now and still fights her feelings of inadequacy and failure.  Equally as stigmatizing would be raising another generation that views others who struggle with the way their brains are wired as disrespectful, careless, and unintelligent.

Of course, maybe the father had it too.  Maybe he's in denial about his own ADD/ADHD.  There is, after all, a strong genetic link to ADHD/ADD.  Maybe this explains why he impulsively gave his young daughter a pot that could flood the house with porridge.  Or why he only gave her important operating instructions once and didn't have her reiterate the instructions or write them down for future reference, just left her alone with the pot.

My husband thinks so.  He was that way once.  Now he embraces his own ADHD and works hard to manage and harness it to his benefit.

Children's programming I feel as though you failed me.

I realize that my reaction came from a loaded place.  I even recognized then that I was overly angry. Nonetheless, I was happy to leave the magical word fairy behind and get back to the business of the day.

It wasn't long before the cardiologist came back and announced that Hunter was totally normal.

Totally normal?  He missed the part seconds earlier where he was wishing he was a shape shifter so he could turn himself into a Muppet. Where he was demonstrating by trying to throw his head all the way backwards, mouth wide open, dancing like a Muppet. 

And the part as we were walking out where Hunter was disappointed that he couldn't tell people his heart was backwards - after all that would've been pretty cool.

Wednesday, February 10, 2010

If I Knew Then What I Know Now

Well time did not come to a screeching halt.  We were on the eve of Rachel’s most dreaded 18th birthday and last night she said family prayer,  in it she slipped in a little personal request, “God if thou will please stop time for me.” 

Thinking about our oldest becoming a legal adult started me thinking about her life.  As the oldest there is no doubt she is the child we learned on, our guinea pig in parenting.  That is especially true when it comes to ADHD (Attention Deficit Hyperactivity Disorder) as she was the first diagnosed.

There is no good way to put into words Rachel’s brilliance or her struggles educationally.  She was about two years old when she drew the boy next door playing basketball.  There was a face, eyes, ears, nose, mouth, hair, body, with circles for all the major joints, feet, hands, and a basketball.  Developmentally that is astounding. 

But as she started school there was no end to her struggles.  She wrote her letters perfectly, but they were just art to her.  Perfectly formed but they had no meaning and she could not recall what they stood for or what sound was associated with then to save her life. 

As we worked and worked with her and she started progressing she was plagued by a younger sister who would blurt out the word she was agonizingly trying to sound out.  It was a never ending battle that raged in our house daily after school for hours on end.  Despite the years spent struggling, reading and math were like foreign languages to her and no matter how hard we tried or how many ways we tried she could not break the code.

I remember Mark and I many times trying to convince Rachel that she was smart, but one time in particular really sticks out and stings.  As Mark and I told her how smart she was and she argued back. She stopped the conversation, pulled out a spelling pretest with a big red F on it and said,

“See I am not smart... I am a failure.”


Our highly intelligent, amazingly artistic 8 year old could not be swayed.  To her core she felt she was a failure. It didn’t matter at that point what we said she wasn’t buying.  She had all the proof she needed. 

One of my biggest regrets has to be not seeking help for Rachel earlier. 

It was sixth grade before we would get her help.  Before she would get the help she needed.  The help she deserved.  I took her to a trusted friend and pediatrician and she was on medication the next day.  People have all kinds of things to say about medication, good and bad.  There are experts and studies to support whatever position that you want to hold onto.

There was, however, no greater proof for me than her excitement the next day as she greeted me at the school with the news that she had gotten a 90% on a math benchmark test. She had never ever passed a math benchmark test before. Never.

I have said before that medication takes you most of the way but is not a cure all.  Rachel didn’t ace every test or assignment placed in her path since she started medication but she was drowning before and it gave her the power to swim. 

Our last self esteem/intelligence talk was only a few months ago.  Unfortunately, it doesn’t seem to matter how many successes she has had since she started medication, and she has had many, she still battles that rough start, she can’t get that big fat red F out of her mind.


I can’t help but contrast that with our youngest son Jaren who started medication in kindergarten. Of course by then we knew what to look for.  When he started kindergarten I told his teacher that we suspected ADHD, filled her ear with the family history.  I told her we were watching to see when, not if, to put him on medication.  She clearly thought I was crazy and assured me that I was over reactive.

It wasn’t three months into school when she grabbed me after class and indicated that Jaren was, “not available to learn.”  Jaren started meds with in a month or two.  Jaren has never doubted his intelligence or his ability to learn.  Largely because he has had the benefit of everything we learned from parenting Rachel.

He is not scarred by those years of frustration, the hours of work to get one assignment done, the supplemental programs, summer long work to retain,  not to mention seeing and feeling the difference between him and his peers that Rachel had before we got her help.

Mark always says, “IF ONLY will kill you.” That you have to live by phrase “NEXT TIME” and that is true.  Rachel has made it and we have worked one day, month, year at a time to better meet her needs.  Despite her own doubts she is a good solid student and an amazingly creative and talented young woman.

But if I knew then what I know now I would not wait to get help, I would pursue it with a vengeance that would make any mother bear proud.  I would go to my pediatrician, if I was not satisfied with the answers I got I would seek a second opinion. I would not wait to do all the research and reading that I did after I was given her diagnosis. 

I would not be afraid of any diagnosis because now I know the power of knowing, accepting and doing.  Today I would encourage anyone facing the same road as our family to do the same.