Tuesday, January 16, 2018
FASD Diagnosis Survey:
I wrote in Tiny Titan, my long procrastinated book. "The Professionals Read the Charts and we Read the Children. When we share our knowledge with one another, we can find answers. "
The professionals have the research and the book learning and we have had to learn from walking with our children out of necessity and survival. But since FASD has no dedicated funding stream for interventions and resources to help our kids, we have had to find our own way.
It is time for the Parents and Caregivers to step out and help share our knowledge, our wishes and through surveys unite our voices and use the research to shout to those who will listen. Not only will we caregivers share our expertise, but partner with the adults with FASD who are the real experts as they live with FASD and have knowledge to share.
Today I launch the first of many surveys. To the parents and caregivers, please take a couple of minutes and fill out the anonymous survey and help us understand about FASD diagnosis.
Thank you for helping the FASD cause.
Posted by Annystribe at 2:31 PM
Did you know that recent studies have found that the statistics of FASD are suspected to be between 2-5 percent of children in the US and some Western European Nations?
If the statistics are now much higher than previously thought and the risk has been known for decades; why is it that so few children are actually diagnosed and why do we not have systems in place to help them?
Because we do not want to talk about it and we have focused on prevention and intervention but have created the interventions to help those affected. In the US monies are put into prevention and because those with FASD have no place to find help and hope. Currently there is no dedicated service silo when FASD is acknowledge to fit under disabilities and schools have no dedicated qualifier for services as well.
We have come a long way in the last twenty years on knowledge and awareness about FASD but we have a long way to go. When we adopted our children, they did not tell us they were prenatally exposed to alcohol, but the alphabet soup of illegal drugs were highlighted. My children along with many other Children with underlying FASD's will find their diagnoses under the ALPHABET SOUP of symptoms they display. But for my kids and with playing detective, we found their hidden answers, prenatal alcohol exposures FASD.
Attention Deficit Hyperactivity Disorder, Attention Deficit Disorder, Oppositional Defiance Disorder, Autism Spectrum Disorder, Bipolar Disorder, Learning Disability, Intellectual Disability or Developmental Delay, Sensory Processing Disorder and so many more.
We look at the symptoms and not the underlying challenge. When we do not have the full picture we treat the symptoms and they tools we use may or may not help the challenges.
FASD is hard to get diagnosed because it requires admission of maternal exposures. Often children from the care systems, may or may not have that information and it may hamper finding the answers.
Kids from stable families, FASD is the last thing anyone would ever think of as a problem. But we know that by the time a Mom finds out she is pregnant, the baby may have inadvertently been exposed. Mixed messages from the media, doctors, society about the effects of alcohol have contributed as well. Its time to stop the blame and help us help our children and adults find the underlying understanding.
Kids with underlying FASD are hidden in the Alphabet Soup of Neurodevelopmental Disorders and school labels. They are everywhere, in every social economic class and it is not just the parents with substance abuse that cause this issue.
The voices of fetal alcohol have been fighting for decades to raise awareness about FASDs. Our voices are getting stronger and a few of us are banding together to continue in the work of Teresa Kellerman, Bonnie Buxton, Brian Philcox, Jocie Devries, Delinda McCann, Vicky McKinney, Bruce Richie, Vicki Russell, Susan Rose and so many more who have walked before us. The work of Nofas and Mofas helping create the awareness and platforms for us to move forward.
We are stepping out to unite our knowledge and speak up for those who cannot and take our Red Shoes and run with FASD. We can no longer wait and keep having our loved one fail.
Every Wednesday I have challenged myself to write on FASD and share what I have learned in my last twenty years of Parenting FASD Kids and Adults.
Posted by Annystribe at 2:06 PM