I recently found, or should I say noticed, some language that has bothered me a little and I thought I'd share it with all of you and get your opinions.
FASD is a primary disability, one that a child/person is born with. Then there are what are called, "secondary disabilities". This is where I have recently been a little bothered by one of the definitions used by some organizations. A definition that an organization I am familiar with has been using for secondary disabilities is: "Secondary disabilities are those that develop as a result of failure to properly deal with the primary disabilities."
Let me tell you the part of this definition that bothers me, if you haven't already figured it out. This part, "that develop as a result of failure to properly deal with". This to me, sounds like if us people who are parenting and loving our kids, had worked harder, and "more properly", our children would not end up with the secondary disabilities. Akila would not have ADHD if I had only been more proper in dealing with her brain damage. She would not have a learning disability if we had not failed to deal with her properly.
I know this organization probably does not mean it like it sounds. Or maybe I am misinterpreting what they are saying. But that is how it sounds, like I failed. And all of you out there who are parenting and loving our children with FASD, have not done it properly. According to this language, we failed. And this definition is being used when training people.
I did send an email yesterday with my opinion on the wording. I was not able to find their source on the definition, and I am guessing they have one. I searched through Ann Streissguth's book, "Fetal Alcohol Syndrome" where she talks so much about secondary disabilities. She is one of the main researchers on secondary disabilities. I did not find this definition.
Here is the definition that sounds better to me: "Secondary Disabilities are those not present at birth but occur as a result of the primary disabilities." Yes, Akila has ADHD, learning disabilities and other mental health issues. They are for sure a result of the prenatal exposure to alcohol that resulted in brain damage.
I know that some people may think that I am being too sensitive, and maybe I am. But it worries me that we are training people out there, educators, medical professionals, students, etc. with language like this. If someone is not involved enough within the field of FASD, or within the family structure of a family living with FASD, they could make some serious assumptions about us if that is the definition they believe.
I know that it is not our "failure" that caused Akila to have ADHD, and some of her other secondary disabilities. But people like me who are parenting children with FASD, get enough messages, subtle, and not so subtle, that we are failing. No matter how involved we are, no matter how hard we try, no matter how much we learn, we do go through periods of feeling like we are failing. How could we not with the extreme behaviors we are facing daily, hourly. We certainly don't need advocacy organizations to use language that sends the message we hear daily from the majority of the world.
I have said my peace.
Is it really?
1 week ago