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!

Monday, September 26, 2011

I am Aware: Transistion is Traumatic

There was a tent in my living room Friday Night.  Not a makeshift fort with blankets thrown over a bunch of kitchen chairs.  A real honest to goodness four man tent set up in my living room. 

It didn’t start out there it started out in the backyard.  It was panning out to be a most perfect evening.  The two youngest boys have been planning to camp in the back yard since we moved into this house.  They were ecstatic that it was finally happening.  Two of their older sisters were too.  With the younger boys out of the house they could stay up late and watch a movie that is a little too scary for those younger boys.  It was a win, win situation. 

Until there was a lightning storm outside that just wouldn’t stop.  That changed everything and change is not a friend to the ADD/ADHD brain.  It started with our youngest sitting quietly on the couch crying.  He was really disappointed.  He had waited and waited and set his mind to this happening.  We came up with a plan to move the tent indoors and they could camp out there. 

One sister was fine with it; she doesn’t have ADD/ADHD so she could see beyond the moment of panic that comes with change.  She was in, she said she would sleep on the couch and they could watch movies.  It was working out.  The change was not working for other sister.  Those little brothers inside meant they were not watching the movie she wanted to watch.  

In my experience change is consistently hard for the ADD/ADHD brain to handle.  It doesn’t matter whether it is good or bad change.  It doesn’t matter if it is a real or perceived plan.  It doesn’t matter how many wonderful substitutes are offered. It doesn’t even matter how old you are or how accustomed you have become to change.  Not if, but when change comes, it is terribly hard for their brains to process that change and transition to a new plan.  

That moment when you have to accept the change and then transition is rarely pretty.  I think this is why, like a mouse zapped every time it touches cheese, I am reluctant to commit to a plan until I am pretty darn sure it is going to work out.  I don’t think I gave my blessing for the campout until late afternoon; there were only a couple clouds in the sky then.  Certainly, nothing that seemed threatening.  Nothing that foreshadowed the evening’s lightning storm both inside and outside the house.  

Our approaches to handling the two meltdowns were very different.  With our youngest we are working on acknowledging that change is a very real part of life and when it comes you can find a suitable alternative to your plans.  Sure the first plan was going to be fun but the alternative can be equally as fun, maybe even more fun, if you embrace it and let it be.  

With our daughter we wanted to add a step on the learning curve.  Life is change and change is a constant in life.  There are suitable alternatives, maybe even better ones, and when we embrace them we can enjoy them.  Those are the same lessons, the added lesson for her is, and as you get older you have to get better at controlling your outward responses to change.  She has a tendency toward the dramatic.  You cannot have the public meltdown that you can when you are younger.  You have to find ways of controlling the outward disappointment and anger or look like a gigantic two year old. 
In the end they were happy as clams in the living room, in a tent, eating popcorn, and watching Ponyo.   In fact, I believe more than one person indicated maybe it was better than the original plan.  

I am aware that change is always going to be a sore spot with my ADHDers, it is just how their brains are wired and that is not changing.  I am also aware that while they cannot change that hard wiring in their brain they can learn coping mechanisms to help them process change and transitions when they come in a healthy way.  

Heaven knows change comes often enough to have lots of opportunities for practice. 

Friday, September 23, 2011

I am Aware: It is My Emergency

For years I have been threatening to burn the plaque that hangs in our home that says, "Lack of planning on your part, does not constitute an emergency on mine."  Maybe in a normal house that would work but I have not found it to be true at all. Sometimes I think the sign is laughing at me.

Sure, I get the fact that sometimes we have to let our children suffer the consequences of their lack of planning but let's face it, ADD/ADHD is different.  IF I did that all the time they would flunk out of school, loose every friendship, never go on outings because they didn't turn in the permission slip.  I could go on forever, as I am sure you could too.  So, it is what it is.  I do a lot of crisis intervention.

A lot of times it is not a lack of planning that is the problem, it is all the other aspects of how the ADHD brain works that get in the way.  Life is like an obstacle course riddled with forgetfulness, distraction, diversion, fixation, impulsiveness all pulling the brain away from the plan.  At times even the best coping mechanisms cannot compete with executive function malfunction.

Case in point.  My daughter Mary just left the comfortable security of home school and entered public high school.  It has been a great experience for the most part.  She is engaged in school and the school is engaged in helping her succeed.  I could not ask for more.  Most of the time she finishes all her homework in classes she has during her day to help her.  This is perfect!  If you have ever tried to do homework with a child who is unmedicated and exhausted from the mental energy exertion it takes to focus in school you know exactly what I mean.

But, there are times she does have homework that she needs to do at home and because of her ADD/ADHD and the fact that it is not the norm for her - her risk of forgetting it is HUGE. She doesn't seem to remember she has homework until I ask her to do a chore, that seems to jog her memory every time. Suddenly it comes rushing back.  Panic, tears, excuses...frustration for both of us.  Of course, by this time she has usually been home for a while, gotten a snack, watched a favorite show or two to relax.  Plenty of time has passed in which she could have done homework, if she remembered.

Just the other night I asked her to cut up vegetables to go with dinner.  The panic, the melt down, the tears.  How awful am I?  She assures me if she doesn't do the homework right then she will forget again and then her grades will plummet, she is so proud of her A's and B's.  What about college, she pleads with me?  If her grades plummet then she won't get into a decent college, the college of her current dreams, MIT.  No amount of "we won't forget the homework" plans worked to calm her down.  The more I said cut veggies the more hysterical she became.

Finally I said, "go - do the homework!"  Okay, I may have spoken loudly.  She kept going and going, weeping and wailing and gnashing of teeth.  I looked at her and said, "Mary, you won.  Stop.  Take your victory and go do your homework."  And what exactly did she win?  She won a new after school routine.  No more favorite shows to relax.  Not until after dinner, which is after chores and a double check on homework.  So far so good.

Some people might say I gave into manipulation.  That the melt down was an act to get out of the chore.  I don't see it that way.  People who don't contend with disorders that effect the executive functions of the brain do not know the pressure and panic of people who do feel.  Their desire is to remember, they don't want to forget and constantly appear negligent, defiant, or incompetent to the world.  There is a painful self consciousness about their lack of control over what sticks in their brains and what doesn't.  I am sure they, at times, feel betrayed by their own mind.

While the person with ADD/ADHD may forget things easily they have a hard time letting and forgetting  failures.  When that moment comes, or they feel like it is coming, every past failure is clear and present.  I know her panic and fear are real.  So, I try to address the fear and emotion.  Then the issue.  Then a long term solution.

Yep, their poor planning is my emergency.  It is my teaching moment.  It is an opportunity.  But still, my emergency.

I am Aware: Parents are Experts

I was talking to a teacher, a new teacher to us and really a relatively new teacher altogether.  She was frustrating the heck out of me.  I have to admit, I was at whits end trying to communicate with her how ADHD  effected the way one of my children approached school.

I finally stopped the conversation dead in its tracks.  Do any of your children have ADHD?  Does anyone you know have ADHD?  Are you familiar with it at all?  Probably, not one of my finer moments of diplomatic relations with teachers, but, definitely nicer than what I almost said.  I was frustrated and feeling a little snarky. 

No, she had no personal experience with ADHD but she assured me there were experts in the field that could help me.  HA!  For the first time I stood up and said what others, including our family psychiatrist and other professionals have been telling me for years.  I firmly stated, "I have 6 kids and a husband with severe ADHD. I AM an expert in the field, I live it everyday.  Let me tell you how their brains work..."  the conversation went on from there.

September is national ADD/ADHD Awareness month.  To honor that I thought I would share some of the things that ADHD has made me uniquely aware of.  To start, I have come to realize that I am an expert in the field of ADD/ADHD and the many co-occurring conditions that float freely around our house.  I am an expert because I have spent over 20 years in the trenches with it.  It doesn't mean that I have all those extra letters after my name or that I have a fancy degree hanging on my wall.  It most certainly doesn't mean that I know everything.  But to one degree or another all parents with children are experts. We are experts in our children's personalities, their struggles, and their strengths.

I have spent a great deal of time becoming educated on ADD/ADHD and the other conditions they cope with everyday but my real expertise comes from just day to day living, trying to understand the how their minds work, how they take in information and stimuli, how they process it, and how it comes back out in their behavior.

I believe that most parents, even parents that have just been handed a diagnosis and haven't even begun to research or learn about it, even those who don't understand the scientific ins and outs, are experts.  They are experts on how their child will react given any set of circumstances and how to influence that outcome of their behavior for the better.  They are experts in their child's strengths and weaknesses. 

Sometimes it is easy to be intimidated when you walk into a Student Study Team, IEP, 504 meeting or even when we take our kids to doctors or other professionals for help.  We look to them as the experts.  We forget that we, as parents and advocates for our children, stand on equal ground with the experts.  We bring to the table a unique perspective, the day to day details, the clues that will help unravel the puzzle of our child's brain. 

It is the combination of our expertise and their knowledge that will hopefully benefit our child most in the long run.  I have become aware of the importance of being an expert in my child's life.  The importance of embracing that roll and proactively becoming the best expert I can be in my field.

Wednesday, September 21, 2011

Out of the Nest

We have embarked in a whole new phase of life in our house.  It has taken awhile for me to get my bearings as I have been stretched over this new schedule.  We have two in college.  Three in high school, at two different schools, and two still doing home school, but with two different supervising teachers. One still in an elementary and one in junior high.

For the past four years we have had everyone under the shelter of various online programs.  There was a safety in being able to more readily control the environment, to accommodate with ease.  In addition, the home school we used for our K - 8th graders was wonderful about IEP (Individualized Education Plan) meetings and providing services.

That was a stark contrast to the school district they had attended before where we had to fight to get testing and services.  Where, to make the simplest thing happen, we had to threaten to call the OCR (Office of Civil Rights) on the school district.  In a way, it felt like we have been in the security of the nest for these four years that we have been doing home school exclusively.  In the meantime, everyone is growing up and their skills are growing and their needs are changing.

Eventually, it's time to leave the nest.

This school year we took our first big test flight.  I suppose the mother bird in me has been busy flitting around trying to make sure no one met the pavement below too hard.

It started with getting my two oldest settled in college.  I have been at this long enough now that I know some of the pot holes and how to avoid them.   So, when we got them all registered I handed my daughter the phone and said, "now, you need to call and make an appointment with disabled student center to get on the record from the start that you have ADD/ADHD and need accommodations."

Didn't necessarily make me the most popular mama bird in the tree but that's okay.  It has created a safety net for them that was worth the initial balking.  They got the accommodations they need in place, if they need them they are there, and they learned they have some extra perks.  For example, they get to go in and meet with their DSPS counselor and registered before all of the rest of the students on campus so they can get the right classes and professors.

Within the a couple of days of getting the oldest two settled it was time to get Fernie into an alternative education program close to our new home.  He was doing online school with our older kids through the school district's on-line charter HS.  It worked for him, he came to our family severely short on credits to graduate and needed a program that would allow him to make those credits up quickly.  He worked very hard last year in a system that was really not designed for his optimum learning style.  He came very far but not far enough to re-enter public school and graduate on time.  

I have a half written post that will dive more into his experience in Alternative Education.  It has been an interesting experience to say the least.

Once he was off and flying, testing his wings, it was time to enroll Hannah and Mary in regular high school.  This was a huge step for me.  Probably the hardest for me to let walk to the edge of the nest.  Hannah because she is most like me, but very shy.  Mary is the child in our family that has managed to collect the most disorders and the one we have had to fight the hardest with the schools for services.

I have learned a great deal as Mary's parent.  I learned how to get fabric paint out of cream colored carpet. I learned that while preschool scissors cannot cut paper they can cut metal mini-blinds.   I learned what 504, IEP, and OCR mean.

Last week I walked into my first public school  IEP meeting in four years.  We had them with the online home school program we use but they have been such a wonderful experience that I have to admit I was a little nervous about how this one was going to go.  Would it be as wonderful as the CAVA (California Virtual Academy) IEPs or would it be as traumatic as the pre-CAVA ones?

It was great.  I love it when you walk into an IEP and those teachers and staff that you are working with as a team in behalf of your child see your child's strengths and weaknesses just the way you do! Could not have asked for more.

Word is - that little bird is flying in high school, just fine.  She's got all As and Bs.  Speech impediment be danged, she tried out for and got a part in the school play!  She is taking high school by storm.

So, it looks like all my baby birds are doing well.  Maybe I can cuddle back into the nest a bit with my two that are still in home school before they get ready to start testing their wings.  Next year will come soon enough.