Tuesday, October 09, 2007

Lab Rats

Our family is participating in a research study at UCLA. Today Joey and I spent 7 hours taking all sorts of tests in an effort to help researchers identify a genetic component to ADHD (attention deficit hyperactivity disorder).

We did all sorts of things, ranging from simple IQ tests to blood tests to brain wave mapping. We did mental math, we spelled, we made shapes with blocks. We stared at a dot on a computer screen with an electrode cap on our heads. We answered lots of questions about our learning styles and showed off our right-brain vs. left-brain dominance through the exercises that were administered. Surprisingly, we both had a lot of fun!

Joey was diagnosed with ADHD two years ago, by UCLA, after extensive testing to see why he was struggling in school. As his teacher, I strongly suspect that he is also dyslexic, although he has not been specifically tested for this. Joey is a very smart, creative boy, and it kills me to see how difficult academics are for him and how much he dislikes schoolwork of any kind. I am sure that I could do a better job of teaching him if only I knew what techniques might be more effective for his style of learning. It was with this in mind that I contacted UCLA again this month to see if they could help me, as I did not think to have them give me a formal diagnosis with all the paperwork to go with it the last time we were there.

Happily, I learned that UCLA was currently conducting a family genetic research study that would provide me with the comprehensive diagnosis and evaluation I need in order to request special help from Joey's virtual school. Although homeschooled, Joey is technically a public school student and therefore entitled to modified curriculum, testing assistance, and other resources that may help me to reach him better. I just have to have an official diagnosis to receive these services, so off we went to get one.

The researchers are focusing on several genetic markers they have identified in children with ADHD. They believe that this is a genetic disorder and are interested to see how it runs in families. Our family, with so many children, is a dream come true for them in terms of "studyability". Lindsey, Sam and Jay will go next week and do the same things Joey and I did today. At the end we will receive a report on how we all did and where we are on various evaluative spectrums. Fascinating stuff, this is.

I, for one, did not believe ADHD was a real disorder until I had a child that clearly had it. Like so many other people, I believed that ADHD was the result of bad or lazy parenting or largely created by drug companies to sell more pills. Now that I know better, I am happy to be part of research that not only validates this as a real condition, but that will lay the groundwork for acceptable educational alternatives for children who cannot succeed with traditional curriculum. Children with ADHD are generally very bright and often have special gifts to compensate for their difficulty in traditional education. The researchers I worked with today celebrate and support the child with ADHD rather than attempt to stifle or routinely medicate him, and I love that.

As much as I enjoyed today, I now have a new respect for research subjects. The whole thing was exhausting and mind-numbing! Rest assured that this rat is happy to be out of the maze and back in her cage for the night.


nutmeg said...

Suzanne, we should "chat". My oldest is also dyslexic/ ADHD, and we've made a ton of progress with him through the Davis Method of treating Dyslexia. They have a few books out there to explain it. But the instruction he has received has been amazing, and I have already noticed a difference in his school work here at home.

You can e-mail me if you'd like more information....

I know how hard this is!!


Anonymous said...

Good morning Suzanne,

What a thoughtful and informative writing about your trial and tribulations with the DHD diagnosis. It was so moving for me.

My son Chris (now 20) was diagnosed fairly late (1st year of middle school) with ADD. Because of his personality, his intelligence and the fact that it was ADD rather than ADHD, he was able to develop coping skills in elementary school that "got him through". Unfortunately those same coping skills no longer worked in middle school and he floundered and was lost. Luckilly, we were quick to try to find an answer once I realized there was a problem. He was tested and the diagnosis made.

AS you probably remember, Chris is a very quiet and thoughtful young man and that served to cause problems. His personality tended to make him fall between the cracks in the school setting which is why I had always wished I could have had the opportunity to put my teaching backround to use in homeschooling him as you do with Joey. You are a blessing for Joey and Chris is proof that children with ADD / ADHD are very very intelligent and will go onto use their wonderful other assets to make the world a better place.

Your writings about the genetic study brought back memories of our genetic counseling at UCSF when Chris was an infant. His large head at birth made all the doctors suggest that he might have hydrocephaly... His irises are two blue, his toenail turn, he had two swirls on the top of his head rather than one.... I'm tearing up as I recall those early days with Chris' doctors. After all that testing - which I thank God they were able to do... the diagnosis change and became... genetically, he comes from a family with big heads.... :)

Chris (and his big head) went from a diagnosis of hydrocephaly (which we would have dealt with) to a kid who continually scored in the 99th percentile on the math portion of the STAR tests... but was flunking out of Math in 6th grade....

I wish you all well with all that testing... it seems to go on forever - but you are finding out information and that will help Joey, the rest of the family and probably many other children.


Qtpies7 said...

That is really great that you got in on the study!
We do virtual school with my 12yo, he hates school, it was such a struggle making him go when he would write notes about wanting to die and hating his life. I couldn't do that to him again.

Jen Savard said...

Hi Suz,
You know the trials and tribulations we have had with Hannah over the years with her ADD. Luckily she was able to learn the coping skills and is now drug free but it was heartbreaking for many years. As with Donna above we couldn't understand why Hannah would score perfect on her State testings but also be flunking her daily grades. Hannah is now in 8th grade and even though things are much better we still struggle. Maybe now it's because most of the time she copes very well but sometimes she just "loses" it and stands out more now. Happily I can say that she is finally being rewarded for those great tests scores and has been nominated to attend a program for young scholars next summer. I am so happy that you have this program to help you understand what ADD/ADHD is and how it is something that can be managed if you have the right tools. I wish we would have had that kind of support system.
Good job mom lab rat!

Suzanne Di Silvestri said...

Thanks you for sharing your own experiences with ADHD/ADD. It really helps me feel as if I am not alone in my worries and challenges!

Having observed firsthand what great kids Chris and Hannah are, I am doubly encouraged. Joey is a great kid, too, and will grow into a fine man. Thank you for your comments. I truly appreciate them.