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!

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.

Friday, August 24, 2012

Send Your Child Back to School with Their Own User's Manual

"Hello Mr Lucus, this is Mary.  She's severely ADHD, you will probably wonder why we aren't medicating her, we are.  You should see her unmedicated.  She's also dyslexic and we finally got her IEP set up the end of last year.  She reads, like she writes, like she talks.  It's all garbled. It's okay she's used to people asking her to repeat herself 40 times and rephrase things so she can be understood.  She has an absolute phobia of math, expect massive stomach aches right before math time.  The nigh unto death, send me to the nurses office now kind. When she runs she leans farther and farther forward until she face plants. Oh, and she only sees out of one eye.  Have a good day, bye!" and I walked away.

Admittedly, not one of my finer transitions into a new school year but in my defense they sprung a new teacher on me last minute.  I certainly wasn't going to just drop her with her bag of learning differences at the door without any introductions or explanations.  That would not be fair to either of them, the first year teacher or my then 4th grade daughter.

I walked away thinking there has got to be a better way.

As a parent with lots of kids with special needs and the opportunity to work with lots of teachers over the years I realized a few things.  First, most of our teachers really had a deep desire to help.  Even when we pulled our kids out of a traditional school setting it really wasn't because of the teachers, it was the administration and the overall inability or unwillingness to meet our children's need that drove our decision.

It seemed to me that our teachers, administrators, and resource staff were at a terrible disadvantage.  They didn't have the years of experience I had with my child.  They were shooting in the dark, trying to hit a target.  I needed a way to turn on the lights and give them, and therefore my children, the advantage.

My husband and I came up a flip book presentation that the teacher could keep as a reference book about our child.  A book that would represent them, their strengths, their struggles, all the applicable tricks, a user manual of sorts.

Create a user manual for your child

1.  Start with a 1inch presentation binder with a clear cover so you can put a cover page of our own design on it. Title it something fun, decorate it to make it inviting.  Get dividers and label them for each section so that the teacher can easily access information in the future.
2.  Write an introduction letter to our child including specific learning differences and disabilities you have noticed, strengths, and challenges.  Include pictures of your child having fun, being silly, being a part of your family, show off their personality.  This helps your child's caretaker see them in a different light, more than what they may see in a classroom.

3.  Provide information on all the disabilities you listed.  Copy your favorite articles or sections from books that will enlighten the staff working with your child and help them to understand your child's experience better.  Pick items that are short and to the point, afterall, you want them to actually be read.  As you find information throughout the year you can pass it on to be added to the binder.

4.  Include a copy of your most recent set of modifications, 504, or IEP and results from testing you have had done in the past.

5.  Provide a bullet point list of strengths and things that you expect to be problems (be honest, there is no point in hiding or pretending there isn't an issue when there is).

6.  Provide work samples or examples of previous work to illustrate the bullet point list.  For example, for our daughter mentioned above we included samples of her writing and math.  Include samples that show off strengths also like art work, picture of performance groups or sports teams, cds of musical abilities.

7.  Provide tips and tricks you have learned over the years that help your child with whatever you anticipate the problems might be.  It's easy to blanket solutions - we know as parents of these unique kids that there are no blanket solutions. This is an opportunity to advocate what works for your child.  What fidgets might work and not be disruptive, how to calm a situation that's escalating, what works for meltdown, what prevents them, how to give transition time.  List all things that help your child function at their best with a brief explanation of why or what is accomplishes.

Ever get a new appliance or piece of technology and with it a user manual all wrapped in plastic only to slide it carefully into a filing cabinet never to be opened?  That is not what you want to happen with your carefully constructed user manual.  Make a face to face appointment with your child's teacher, sit down and go over the binder with them.  Walk them through it, addressing the highlights and most important information.

Headed to a Student Study Team, 504, or IEP meeting?  Make multiple copies so that each member of the team can follow along.  When the meeting starts tell them you have something you would like to share with the group, pass out the binders, and walk them through it. It will help the team know your child and their situation better.  It will help you cover all the points you need covered in your meeting.  It will show your dedication to making things work. It will help create a teamwork environment.

Mary's almost 16 now, she's a beautiful, bright, amazing young woman.  She is still severely ADHD, we now know she's not just dyslexic, but has Dyspraxia, she still has trouble with her Rs and dropping parts of words when she talks fast.  She has Sensory Processing Disorder, Motor Processing Disorder, problems crossing the mid-line, and amblyopia.  She's been back in public school for over a year now.  She had a part in both the fall and spring plays.  She got all As and one B (in PE) last year, no modified grades.

Oh, and she still leans forward when she runs, though she doesn't fall nearly as much and when she does she gets back up and keeps going.  Isn't that the goal, isn't that why we work so hard as parents.  She proves to me everyday that being a strong advocate for your child is worth it.

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Sunday, August 12, 2012

More Mariah's Life Lessons: More Rules to Live By

Everyone has to come up with ways their own ways to cope with the frustration of life.  Those ways become especially important when your juggling a few extra items like a hefty dose ADHD, anxiety, auditory defensiveness, an obsessive nature, and some seriously lagging social skills mixed with a tiny bit of paranoia.  Mariah has come up with a brilliant way to cope through what she calls her Life Lessons.  Bits of wisdom she has learned, sometimes the hard way, as she lives with ADHD.

When we left off with Mariah's Life Lessons: Rules to Live By we were at #24

Life Lesson #24 it is considered socially unacceptable to throw a bowl at someone's head in public.

Life Lesson #25 most people who work in "customer service" or "counseling" don't really have any desire to help you.

Life Lesson #26 WHY PUNISH THE PETS? Some people name animals stupid things. Personally, I believe this is a manifestation of failure or a form of overcompensation for the lack of happiness and success in their lives...... these people are also known to eat frozen dinners often and watch reruns of Rent.

Life Lesson #27 Sometimes you got to know when to shut up.

Life Lesson #28 never, and I mean NEVER, give sprinkles to squirrels. Eventually you will run out and they will NOT be happy.

Life Lesson #29 some things are timeless, like glow-in-the-dark stars.

Life Lesson #30 there are many luxuries of modern life that we don't appreciate until we no longer have access to them.... like propane (i.e. stove, hot water, heater, etc.)

Life Lesson #31 the little things in life can be so important... for instance, lets be honest, we all love the Super Bowl but, the best part is the commercials.

Life Lesson #32 Cigarettes are like squirrels. They are perfectly harmless until you put one in your mouth and light them on fire.

Life Lesson #33 some people can just make your whole day better, no matter how bad your day was. Sometimes all you need is a good chat with a great friend.

Life Lesson #34 if you love someone you should never intentionally hurt them. If you do and they love you anyways.... maybe you should listen to them and try to show them you love them back.

Life Lesson #35 unconditional love is an interesting concept. Many people seek to find it, but not many seek to give it. We all want mercy, patience, and compassion but when it comes to the trespasses of others we seek justice, retribution, and reverse.Why is this? I like to think it's because we're all children, as silly as their may sound, it's true. Everyone will eventually know the pain of a broken heart, feel the weight of a heavy burden, and the loss of someone dear. No matter how old you are, how much pain and suffering you have experienced, or what you wish to one day achieve we all desire one thing.... unconditional love; that is, safety and refuge in the arms of another, regardless of the circumstances.... it is the greatest gift that can be given or received. It is worth all the heartache and sleepless nights. When you can give someone a safe place to fall, when they know you will love them regardless of what they do. And though it if not often the case, when that gift is returned it is more valuable than anything in the world. It is what makes life beautiful, regardless of the pain. It is beauty, it is strength, it is unconditional love.

Life Lesson #36 Dogs will be dogs.

Life Lesson #37 don't honeymoon in Sub-Saharan Africa.

Life Lesson #38 remember, you never have all the facts.

Life Lesson #39 never ask a Mormon to make you coffee.

Life Lesson #40 stupid people will say stupid things, don't waste your time they're not worth it.

Life Lesson #41 bedbugs are the vampires of the insect world.

Life Lesson #42 its important to remember this when things get hard, buy even more important when they are not. Good moments are fleeting, savor them.

Life Lesson #43 doubt is self- fulfilling.

Life Lesson #44 sometimes.... life just sucks and you need to cry yourself to sleep to make it better.

Life Lesson #45 sometimes all you need is for some strange lady to sing Shawn Mullins to you and then... everything will be alright.

Life Lesson #46- middle of the night calls from people you love are the best way to make everything better :) love you ♥ thanks

Life Lesson #47 apparently some people really do eat salad at 1:00 am.

Life Lesson #48 say a funny word with a straight face, it will undoubtedly make you smile. (ex. ambrosia, kumquat, Kalamazoo, shenanigans, etc., etc., etc.) Try it some time.

Life Lesson #49 it's a small world. When you haven't seen your cousin in years and the first time you meet again she's measuring you for a bra.

Life Lesson #50 wearing superhero underpants does not make you a superhero.