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!

Tuesday, October 26, 2010

And For My Next Trick I Will Make Four Children Cry at Once

My husband says I have a hard time committing to anything.  I think it is a learned behavior.  Like a lab rat that gets zinged by pressing the lever I know that if I commit to a plan and it doesn’t work out the very gates of hell will open up.  The weeping and wailing of many voices, all belonging to me, will cry unto me unceasingly.

That may be a bit dramatic.   But those of you who have ADHD family members or who work with them know that change is very difficult.  There needs to be transition time and sometimes in life there just isn’t anyway to ease into a change.

As a result I use qualifiers all the time.  Words like; maybe, possibly, I am considering it, and we’ll see have become standards in my language.  These terms give me plausible deny-ability. Very rarely do I use language of complete commitment. 

There are only a few things that I commit to as far as plans go.  We will be going to church on Sundays (unless barfing or bleeding).  We will be attending youth activities on Wednesdays.  We will go to speech and occupational therapy.  We will keep doctors appointments and meetings with our home school supervising teacher.

The Plan

The plan was to go through our morning routine.  Start school on schedule.  Then get ready and leave for our face-to-face teacher meeting at 10:30 am.  Rachel, my 18 year old, would head to “town” with me and my three younger home school kids.  All of the above mentioned children are severely ADHD. 

All was going according to plan until 10:15 am. 

The Monkey Wrench

At 10:15am I got a text telling me that two of my three up at the high school were suffering greatly from stomach issues.  One was bent over with stomach cramps and the other was ready to barf.

The Dilemma

Do I scrap the face-to-face meeting, try to postpone it an hour, or go and leave the sickies to tough it out at school for four more hours?  The sickie texts were coming faster and faster.  The teacher could not meet at any other time. It would take me an hour to drive to the high school and back to pick up the high schoolers.

The tears were already flowing when I drove out of the driveway to the high school.  According to everyone at home, whose day and plans had been ruined, I was headed the wrong direction. 

The Fall Out

They had their individual reasons for falling apart. 

My oldest is seriously socially deprived by living in the country so far away from a mall and civilization.  Her plans were to sit in the Panera while we had our meeting, draw, and scope out hot boys, the type that do not exist in our area.

The younger ones all home school and want to get away from the house, but probably more than that they had their heart set the ice cream treat coming after the face-to-face meeting. 

They seem like simple things - nothing too pressing or earth shaking, but let me tell you the earth did shake.

I got home with the sickies and was met by a chorus of pleading, screaming, and crying.  I thought my brain was going to explode. Let me tell you there was weeping and wailing and gnashing of teeth; followed by begging and pleading to go with me on the errands that I still had to do.

I hate those explosions, everything goes from relatively calm - at least normal amount of calm for us - to absolute chaos and stress in a matter of seconds.  It is emotional whiplash.

After everything was close to back to normal - maybe an hour later - and I had the four as a captive audience in the van.  We had what my mother used to call a “learning experience.” 

I told them that I understood that their brains have a hard time with change, that they set themselves mentally to a plan.  I get that the disruption of that plan is like suddenly losing gravity.  They feel lost and disoriented.  But I need them to work with me on staying calm enough to work through it with me instead of railing against me.

I know from my husband Mark’s experience that these kinds of cold to hot temperament changes can be conquered.  He has worked hard to find an even warm response - even to difficult and immediate changes.

I told them that I needed them to understand that it is hard for me also.  Change isn’t necessarily hard for me if I know what I am changing too.  But the fall out from change with my ADHD family members is really hard on me.  While I try to provide transition into change for them when I can not all change can be successfully transitioned into. 

Sometimes life happens without warning.
Sometimes, despite all my practice, I am like a bad magician pulling the tablecloth out from under a beautifully set table.  Sometimes, I just end up with a bunch of broken dishes.

Wednesday, October 20, 2010

- . - - - - . - - - - - . . - - . - . . - - . - - - . - - . - - - . - - . - . - - . Morse Code For, “No! You Can’t Make Me!”

Mariah got caught texting at school.  Well, actually she was emailing her little brother from her phone.  None the less, she could have gotten her phone taken away, but she didn’t.  Instead the teacher that caught her ended up walking off a little dumb founded leaving Mariah to her email.

She goes to a very small charter school that offers an online curriculum.  Most of the students attend from their homes but there is a “school” site with a principal and teachers and about 20 students in a one room computer lab.

It baffled Mariah at the beginning of the year that she could bring her cell phone to school but couldn’t use it.  Being Mariah she took it straight to the principal.  He explained to her that if there was an emergency at the school - especially a violent one - that parents wanted their children to have cell phones for communication. 

This tickled Mariah a bit.  She told the principal that she could see how it would all play out.  Someone would come into their one room school guns a blazing.  Her cell phone would save them as she warned her fellow classmates by text, “Franklin, don’t look now but the shooter is right next to you.”

We all love the principal of the school.  He is a great educator and mentor to these students.  He told her in that situation she could use her cell phone but not in any other.  No technology for this technology based school unless it was an emergency.

So when Mariah got caught using her phone she was quick to respond, “It’s not what it looks like.  It’s important.  I’m emailing my little nine year old brother.” 

The teacher could see her screen.  He did a double take, “Is that Morse code?  Your nine year old brother knows Morse code?”

Mariah’s response was simple but very true, “You would be surprised at all the things my nine year old brother knows.”

Our house runs on a continuum of focus - at one end there is absolutely no ability to focus whatsoever and at the other end is extreme obsession.  In between, there are degrees of momentary focus, focus, hyper focus, and varying levels of fixation.    

For the most part, I ride the wave of whatever is swirling in the hyper focus to obsession range.  I try and roll with it if it is not destructive.  I do have my limits though, for example, I don’t care how obsessed someone is with paint ball blow dart guns I am not buying one.

Some of it is like the tide -- it rolls in for a little while and then rolls back out.  Star Wars, instruments used for spying, Lord of the Rings, various foreign languages, Red Wall, Pokeman, Ninjas, Transformers, even movies or songs.  Anything that captures the attention, tickles the brain, or in others words is stimulating to the mind.   They love to ride the wave. 

Most of the time these are momentary fixations with a subject that come, get explored and played with a bit, and then go away for awhile.  They almost always come back to be re-examined and added to.   They roll in and out or our lives. 

This is good; my poor little non-ADHD brain can only handle so many random facts at a time before I think it is going to explode.  I welcome the rotating obsessions as a break, a chance to absorb information, to process it, and brace myself for the next round.

Morse code is one of those obsessions shared between Mariah and Jaren. 

It began a few years ago when we read an absolutely fabulous book series called The Mysterious Benedict Society.  It captured our house.  It was amazing to watch our kids; then six to sixteen, sit for hours listening to the story being read aloud then beg, beg, beg us to read more. 

The characters in the story, all unique in their own abilities, use Morse code to communicate in a very perilous time.  That is where it started.   
It rolls in and rolls out. 

Later that same day at school one of the other students got annoyed at Mariah for tapping on the desk.  He told her to cut it out.  She didn’t say a word to him; she just shot him back a look and kept tapping.

- . - - - - . - - - - - . . - - . - . . - - . - - - . - - . - - - . - - . - . - - .

It means “No! You can’t make me!” in Morse code.

Sunday, October 10, 2010

Changing Views: Getting Beyond the Perception of ADHD

There needs to be a change of perception about ADHD in our communities, one that I believe will only take place as knowledge and understanding are shared.  One that I believe can only take place by learning about the experience of having ADHD not just the symptoms.   

ADHD has to get beyond the annoying kid that can’t sit still, that blurts out answers, acts impulsively, and can’t focus.  How different is the perception of that child if instead of seeing a fidgety child people see a child who didn’t sleep all night.  How real will his experience become if people see not just the outer actions but realize the inner struggle. 

One of our children draws battles every chance he gets, elaborate battles that are animated by sound affects as he draws.  When he is not drawing battles he is lining up opposing armies made of whatever is with in reach to form battles.  Did I mention sound effects?

This child is about the least violent young man I have ever met so naturally it puzzled me why battles would consume so much of his time.  I brought it up with our psychiatrist once.  His answer was profound and I think worthy of repeating. 

He said that is seemed to him that this obsession with battles was an outward acknowledgment of his inner battle to concentrate.   

It makes sense.  His battle is constant.

How many individuals struggle and are seen largely for their disruptions and failings with no understanding of their battle?

ADHD is hard for people to wrap their minds around.  It is made harder by the absolute individuality of the disorder.  It comes out so differently in each individual not only because each person may have differing symptoms but also because each individual reacts to their symptoms differently.   

Take for example inattentiveness.  All of my children suffer to one degree or another from inattentiveness but it does not show itself in any two of them in the same manner.  One rolls with the inattentiveness, sometimes wandering around trying to remember what she was doing while another lays out her belongings the night before and checks them three or four times over to make sure she is not going to forget something.   

ADHD is a mixed bag.  I do not want people to think that somehow I ended up with the only ADHD family members on earth that have only cute, clever, and intelligent ADHD moments.  Through the struggle to manage their ADHD they have found ways to use their ADHD to their advantage.  They have found humor in their struggle. 

As my husband is prone to say, “ADHD is a gift with a heavy price tag.” It is what we have tried to instill in our children.  Strengthen your strengths and find ways to overcome your weaknesses. 

As I considered how much to share and how real to get I couldn’t help but feel that the power is in the real experience. The change is in the real experience.  The awareness is in the real experience.  The fellowship is in the real experience; whether that experience is hard or humorous.

Saturday, October 9, 2010

Will the Real Insomniac Please Stand Up?

It started when Mark and I were first married.  I had this silly notion that we would run on a similar schedule.  In our newlywed bliss we would get up at the same time and retire at the same time.  This would have worked perfectly except my sweet new husband didn’t go to bed until two or three in the morning.  Regardless of when he fell asleep he was up at five or six in the morning.

I couldn’t keep pace.  I was more of a minimum of eight hours of sleep person myself.

It was a whole new world for me.  At the time we knew nothing of ADHD or the many orbiting conditions like insomnia.  Now, I am well versed in those conditions, especially insomnia.

Mariah followed Mark.  I had never heard of an infant that slept only 8 hours in a 24 hour period but that was Mariah.  It was insane.  Getting her to sleep became an art form.  She would sleep, in the swing, in the bathroom, under the fan, for little spurts of time.

As she got older that time shrank until when she was in junior high she was only sleeping a couple of hours at night.  Not healthy for her or anyone else in the family.  Once diagnosed with ADHD and medicated we figured some things out. 

What worked for Mariah was a small dose of stimulants in the evening.  It calmed her brain down, helped her process her thoughts.  It seemed like the opposite of what you might do to get someone to sleep, but it worked.  It changed her world.  Sleep was no longer elusive. 

Of course, by then there was another to pick up the slack.    His room was right off the living room and he would call out to make sure I was still up as long as he was awake.  Occasionally, he would blurt out some random thought or realization.

“Why do they call it leap year?” he called out one night.  “It is really only one day of one month.  Shouldn’t it be leap day or leap month?”  These were puzzling thoughts for a five year old late at night. 

Those thoughts were over run  by more troubling thoughts.  They were the kind of thoughts that grow out of too much time to think and no medication to help you control your thoughts.  He started worrying about fires and other “safety issues” as he calls them.

He would lay awake, after his roomy finally passed out asleep.  He would eventually confide that he would picture a toy in his mind and consider if it would burn or melt in a fire.  Toy after toy, it was uncontrollable self torture. 

We tried a litany of medications and other solutions.  Melatonin took the edge off for awhile.  Taking a stimulant at night didn’t work for him.  It just better focused his thoughts and increased anxiety.  It was one failed attempt after another over the last several years. 

In the mean time, he and his roomy had developed all these night time rituals.  His poor roommate, it seemed, was being tortured by hours of activity.  

Then the magic finally happened and we found what worked for our hardcore insomniac.  He takes his medicine and an hour later he is asleep on a regular basis.  He is sleeping.  He is growing and gaining weight.  Life is good. 

You would think that his roomy would be finally free from hours and hours of late night sleeplessness.  Not so.  The strangest thing happened.  Our hardcore insomniac passed out every night but his roomy didn’t.

All those nights we thought that the insomniac was keeping his roomy up.  All those nights and it turns out that the roomy is just as much of an insomniac. 

We waited some time to make sure it wasn’t just habit.  We ran through the simple solutions; those didn’t work. Then one night the little roomy came out crying, begging for the same medicine so that he could sleep too.  Insomnia is no fun alone.

The next day I made an appointment. Now all the insomniacs in the house are sleeping.   

Except me.

Monday, October 4, 2010

Cow Incident

I heard a friend talking about our neighborhood once.  He said, “That’s the only place I know where people build fences to keep the cows out instead of in.”

It is the truth.  We live in a neighborhood with free range horses and cattle. We have lived there for several years now.  Up until this last year the cows seemed to leave us alone. 

Then something changed, it has been war ever since Christmas when they broke down the fence.   It was great fun for our Australian Shepard who got to chase cows all day; not so much fun for us.  That was just the beginning. 

I have often wondered what the draw was to our yard.  There are luscious yards all over the valley, ours looks like a woman with the black thumb of death gardens there.  But they kept coming back and breaking in all spring and into summer.  

 My kids have often joked that this one big black steer was the ring leader of the cows.  They even named him, Boss Cow. He always seemed like the first one in.

I may have inadvertently gotten revenge the other night.  We were headed home from an activity late at night.  It was very dark, no moon and no street lights.   By the time I saw that huge steer right in front of me there was nothing I could do about it.  I slammed on the brakes and braced myself.  From there it was screaming and crying and freaking out times eight passengers.

The boys were first out of the van.  They were checking on the situation.  I was sure that cow was underneath us because the van wouldn’t move.  I looked around, there was steam pouring from the engine, and the battery light was on.  The boys made a quick report - no cow

I guess I shouldn’t have been surprised since that huge old black steer’s back came up over the top of the hood of my gigantic 15 passenger van.  He was big and strong - he was gone. 

Now everyone is out of the van, the boys are running around pumped on adrenaline.  The girls are screaming and crying.  Mariah and Hannah were especially as they stared down the cow as it was hit and rolled up onto the windshield.  I am pointing out that the battery light is on while trying to call my husband and take a picture to send him. 

Some Good Samaritan neighbors had shown up to help.  As it turns out the neighbors heard the crash while enjoying the evening on their back porch and called the fire department.  They were now searching dutifully for the injured cow.  Someone has got to find it and notify the owner. 

My husband was an hour away at work so he sent our good family friends, Don and Steffani, to help.  I tell Don all about how the battery light is on.  Then I tell the Fire department and the Highway Patrol.  Finally, Don kindly points out that the battery light is on because the cow moved the battery and the rest of the engine a good foot and squished it. 

By now the adrenaline is wearing off and the pain is setting in.  The EMTs are not plagued with a boring night at the station.  Mariah seems the most injured - her neck and back are really hurting.  They are strapping her down to a c-spine board as she entertains them as only Mariah can.

Just as we have an uncharacteristically large numbers of family members with ADHD we also have five of the six with a genetic disorder that makes for very loose, bendy joints called Ehlers Danlos. 

There Mariah is on the back board and she flips her arm out backwards, like she does on a regular basis, and says, “do you think this is okay, I feel a little bit of pressure.”  The EMT was freaked out for a moment until the firemen started laughing - they had encouraged this prank - silly firemen, Mariah does not need encouragement.

We were now a sprouting row of back boards in the field by the side of the road.  Secured and taped down, just to be safe.  The neighbors are still looking dutifully for the poor injured cow.  They start to move us to the ambulances.  I can’t say what the rides in the other ambulances were like but I was in the ambulance with Mariah. 

Mark knew exactly which ambulance we were in as we arrived at the hospital because the paramedics got out of the truck laughing.  She started out by reading the triage tag they had tied to each of.  When our EMT got in and asked how we were doing Mariah was quick to point out it could be worse they could have tagged her with the black strip labeled morgue.  It was all good with Mariah as long as there was no black tag.

She pointed out that this trip was an inconvenience since she was supposed to be sitting at home with her dog, eating Greek yogurt and granola, finding out the end of the third Indiana Jones movie.  She mused that now she would never know if he finds the Holy Grail or not.  

She wondered if it was just her or if anyone else was in the mood for a taco.

She went on to recommend that the ceiling was rather boring for someone strapped to a board, only capable looking straight up.  She recommended an inspirational poster taped to the ambulance ceiling.  Maybe a cute kitten dangling from a branch with text that reminded people to, "hang in there" or a beautiful ocean view with a breaching whale.

I finally told her she had to stop because laughing hurt so badly.

As it has turned out her injuries were the most severe and she is still struggling with whiplash pain.

Mark was being brave, visiting room to room, going with each of us to x-ray.  Don was doing the same, visiting bedside to bedside checking on everyone, keeping everyone calm.   It was early morning before we were out of the hospital emergency room. Steffani and another friend, Joey, were keeping those at home calm.

The big black steer was never found.  I kind of wonder if our attentive neighbors have been enjoying some good BBQ on that back porch.  Beef it's whats for dinner. 

With some degree of sadness we said good bye to the Monster Van that had been so much a part of our lives for 7 years. That van had taken care of the mundane day to day running.  That van  had driven us to the ER for x-rays, ruptured ligaments, and more than one set of stitches. That van had taken us on adventures all over California and even all the way to Oregon for a family reunion. 

As my husband Mark put it, in the end it did its job, that van kept us safe.