I've buried the lead so - your going to have to read all the way to the end to get the good news!
Image is a Charles Schulz Peanuts cartoon
altered by me so that the characters are wearing red shoes.
Anyone that knows us knows why FASD is so important to our family. We knew Little Man had FASD when we adopted him, in many ways that made us
“lucky.” We were able to bypass the many
years and many, many specialists most people have to slog through to get
an answer that made sense. What we still
faced – and face each and every day - is that almost NO ONE knows about FASD.
That makes me ANGRY and SAD and just about drives me CRAZY. FASD - is nothing new, nothing mysterious,
and most assuredly nothing uncommon. The CDC may estimate FASD at 1% of the
population but the DSM V says about 2-5% of the population is affected and some studies put
it at closer to 12%. That means AT LEAST 80,000 babies each year are born with
it in the U.S. and it is probably closer to 200,000.
WHY doesn't everyone at least know what it is?
Why don't we all know more a lot more than that about it? Why is there no research on what
prevents the poor outcomes people affected often suffer in life? Why don't we
have support systems in place for them? Why don't we have specialized health
care providers for them like we do for other disabilities? Why is there nowhere in the US you could even
get a degree (no less an advanced degree) specializing in FASD?
looking at a few statistics about people with disabilities supported by our government you would see the following:
Category % of
Population % of
disorders 13% 32%
Blindness 2.3% 2%
Deafness 2.1% 2%
then there is FASD. It is not even
considered a disability. If the person
affected has an IQ below 70 they may be able to qualify as intellectually
disabled. But people who are deaf, or
blind, or mobility impaired do not have to prove any intellectual impairment to
have their challenges recognized and supported, only those with FASD. Comparing it with autism for a
moment - 1.5% of the population is
considered on the autism spectrum. 3% of
government monies are spent on support for those people and there is no
requirement for them to show intellectual impairment for diagnosis or
am not by any means suggesting that autism, or blindness, or deafness, or mobility
impairment are unimportant. I am only
contrasting them with how consistently unknown and unsupported FASD is. So what is the reason for such persistent discrimination? I believe that it is in a large part because
public messages and education about FASD are universally about prevention. The mission of the ONLY large national
organization focused on it is (and has always been) prevention. Of the 30,000+ published articles on FASD
fewer than 10 focus on how to help people with it. No one is looking at the people already
affected – they are the throw-aways, the “it’s too late let’s move onto to stop
the next generation” and that attitude, that stigma of being the “unhelpable”
This prevention only focus is why everywhere our family goes we first have to convince people that Little Man CAN
succeed, that he’s worth the effort, and then go on to teach them about what he
needs in order to do so. But even before
that, we had to educate ourselves. Because just knowing a diagnosis doesn't really
help you understand what FASD is and how to help your child (or brother, or
sister, or parent, or husband, or wife, or employee, or client.) Nope. A
diagnosis is just a diagnosis. And resources to learn about FASD, even if you
are a highly motivated caregiver for someone affected, are few and far
Anyone who knows me knows that I can't just let things go. I always have to have a plan. I got truly lucky when I met Adrienne Elhart
Bashista. She was already hard at work
setting up a nonprofit to operate nationally spreading the kind of training and awareness we really
need to help those with FASD and I was thrilled to join in and help her found Families
Affected by Fetal Alcohol Spectrum Disorder (FAFASD). Parents need the training FAFASD offers,
spouses and significant others need it, educators, doctors, nurses, lawyers, social
workers, police and judges, counselors, employers, everyone does!! Please
visit our website at www.fafasd.org and consider making a donation to help us
reach more people!!
And at last - here is the good news - WE ARE OFFICIALLY 501c3 RECOGNIZED!!! We just got the letter from the IRS. This means any thing you give is 100% tax deductible and we can now apply for grants and sponsorships!