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!

Saturday, October 1, 2011

I am Aware: It is What it is

As soon as Rachel was diagnosed with ADD/ADHD I made an appointment for Mary. There was no doubt in my mind that if Rachel had it Mary did too.  They were too similar in mind set and behaviors.  Sure enough, our suspicions were confirmed and Mary started on medication in the first grade.

She was much more difficult to medicate properly than Rachel.   I could tell the difference when she was medicated but I was pretty sure the rest of the world couldn’t, especially the school.  For a while she ended up on both a stimulant, Concerta, and a non-stimulant, Straterra.  

As she got older it became clear that there was something else going on in addition to ADD/ADHD.  Her writing looked like a word scramble with mixed up letters. She changed words and dropped parts of sentences when she read.  And it was nearly impossible to understand what she was saying when she talked.   We used to say that she read like she wrote like she talked.  In every instance, everything was jumbled, missing parts of words, and there were letters and sounds in all the wrong places.

After two years of pushing the school for additional educational testing to explore problems other than ADHD we finally sat down to discuss the results.  I’d never gotten to this stage in the process before.  Rachel needed a 504 but they wouldn’t give her one because she was not failing.  She wasn’t failing because of the truly heroic efforts that we were putting in at home.  I didn’t understand enough about educational rights at the time to be a really effective advocate.  

The conversation that I was about to have with the school psychologist about Mary defied all logic and reason.  She, of course, acknowledged that there was more going on than just ADHD.  She told me that Mary had an auditory phonemic processing disorder.  I said, “You mean like dyslexia?”  Her response surprised me.  She said, “I can’t say that she has dyslexia.”   

We went back and forth a bit the end result was that she was not allowed to diagnose dyslexia or use that term by the standards of the state.  Yes, that was what she had but she could not put it in those terms.  My end statement went something like this, “So, you can say that she has a malignant tumor but you can’t call it cancer.”  Her response, “Yes.”

Ridiculous, it is what it is.

But it taught me a valuable lesson.  I became aware that, regardless of what the disorder or illness is, it is there whether we acknowledge it or not.  We can try and paint it with a different brush or hide it and excuse it away or ignore it.  It does not change the fact that it is there.  

Most importantly, if we do not acknowledge it for what it is then we run the very real risk of not getting the proper help for the problem.  As it would turn out, Mary has a pretty pervasive motor processing disorder called dyspraxia.  It was through more testing that we really got a plan together that recognized that and addressed it through Occupational Therapy and Speech Therapy.   The real progress came only after we knew what we were dealing with.  

That was only several ago, in that time she went from barely reading to reading 31 novels in one year.  She still reads like she writes like she talks but man she reads, writes, and talks leaps and bounds better.