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Valerie
BY Valerie

Cognitive Research and Down Syndrome: Let’s have a conversation

GenesI know this is a sensitive issue for many parents, because I personally got caught in the crossfire surrounding it when my daughter was born almost thirteen years ago.  Our daughter’s diagnosis of Down Syndrome (Trisomy 21) was unexpected and the only thing I knew to do was reach out to my friend who was six months ahead of us on the same journey.

She was using Vitamin Therapy and an anti-Alzheimer drug to increase cognitive functioning in her daughter, and given I trusted her and knew she had researched the product to the nth degree, I followed suit. I had no idea the controversy which would surround my decision and quickly learned to say nothing of what I was doing…. to anyone.  When my pediatrician refused to do the necessary blood work to ensure my daughter was not being harmed by the high levels of Vitamin A, I found another who would honor my decision.

A Community Divided

Today, a decade later, our community has moved little from these polar opposite views, yet seem quite comfortable using other forms of therapies for this same purpose.  I am also thankfully that we no longer bat an eye at aggressively treating the various other medical conditions affiliated with Downs.  However, when addressing increased cognitive functioning through the use of medicine, it gets a little messy, a little emotional.

Let’s Have a Conversation

Let’s be honest here, having a child with a disability is very personal and we all approach this journey in different ways. My concern is that we are missing out on some wonderful opportunities and productive conversations because of unwritten taboos of the past.

The common concern I hear from those who have issues with this method of treatment are that they worry it will change their children – they will no longer be who they were meant to be. I think we can all agree this is a legitimate concern; we love our children; we love who they are.  But I would also counter this argument with the realization that everything we do, for any of our children, will in the end affect their personalities and who they ultimately become as an adult.  If I sign my daughter up for dance classes, it will impact the way she stands, the way she envisions the world – perhaps her personality will now be more focused toward the arts.

Feeling Vindicated

For me, my decision to take the medical approach was solidified when I discovered my daughter’s cognitive delays would increase over time, which explains why a 6-month old can usually keep up with their typical peers.

Down syndrome is a neurodegenerative disease, and for my husband and me, the key word here is “disease”.  We will fight for her increased cognitive abilities as much as we will fight for her ability to walk, talk, thread a bead on a string, feed herself and read.  For us, and mind you I understand this is our opinion, fixing her heart and keeping her brain healthy are not mutually exclusive, it is part of a desired outcome of overall physical and emotion health for our daughter.

Be The Best She Can Be

Down Syndrome Model MouseToday, our rationale for continuing this protocol is to hopefully give our daughter more opportunities to engage in her community through better communication skills, higher-level reasoning and improved social capabilities, all of which we believe will lead her to experience a more fulfilling life.  We also find hope in the research being done to actually reverse cognitive delays in people with Down syndrome.

Through the use of various drugs, scientists at Stanford University have actually improved cognitive performance to almost normal levels in a mouse model of Down syndrome.  Yes, a mouse is not  a human, but researchers are getting closer and closer to finding solutions to decreasing or eliminating cognitive delay in people with Downs.

Let’s Learn Together

On February 28th, I ask you to join me in learning more about cognitive research for Down syndrome at a free webinar by Dr. William Mobley, Chair of the Department of Neurology and Neurological Sciences as well as the Director of the Center for Research and Treatment of Down Syndrome at Stanford University.

Let me stress up front, I have no affiliation with this organization other than the webinar popped up on my Facebook page. To be honest, I don’t know what they will say; he could tell me all my vitamins are a bunch of poppycock. However, I am willing to learn, because I’m pretty sure my course of action is old school by now and I need to step it up a little. It’s free too, all the better.  I hope you will join me.

Are you ready to start the conversation? Let’s discuss it in the comments below.


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Valerie

Written on February 23, 2012 by:

Valerie represented tens of thousands of families of children with disabilities in Indiana as the Chairperson of the Interagency Coordinating Council for Infants and Toddler under three Indiana Governors from 2001-2006 . This experience, along with raising a young daughter with Down syndrome, has provided her with a unique view and understanding of the issues facing the disability community. You can read her blog at UnitedMediaNow.com
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