“Foolish, drunken, or harebrain women most often bring forth children like unto themselves.” –Aristotle, Problemata
After a 5 month process involving referrals, evaluations, and insurance claims, M finally qualified for occupational therapy (OT). I’ve mentioned before that OT was a game changer for us. With all the gains made through and from things learned in OT, I don’t regret at all the long journey to get him in. However, we were just cut off because M was doing too well. But that is a story for another post. My current excuse for not fighting back for more services is that I am starting a new job and can’t really balance anything else right now.
Getting services for kids with FASD is a BATTLE. They do not qualify in general for 0-3 early intervention (at least in my state) unless they are developmentally delayed by more than 1/3 of their chronological age in at least one of several categories. They also don’t qualify for services if they are over 3 unless they are directly related to school readiness. Fortunately for us, M is developmentally on track, scoring in the “low average” range for almost all categories. His adaptive functioning is the only thing he scores low in these days, but not low enough for school district or regional center help. His behavior problems are off the chart and although we are slowly seeing improvements, we still deal with more difficult behavior than anyone I know.
There is always quite a bit of talk in support groups for parents with kids with FASDs about why it is so hard to get help from professionals. Our population of children is so overlooked, and yet, there are so many of them, 2-5% of the general population. Here are a few reasons that get thrown about:
- The only consistency among kids with FASD is inconsistency. Therefore, there is no standard treatment protocol. And the result is no help.
- The diagnosis is difficult to get. Especially in light on #1. For those of us without any background info on our kiddos, it is even more difficult. Kids often get diagnosed with ASD, ADHD, ODD, SPD, RAD, bipolar, etc. Here is a handy Comparison Chart which illustrates the overlap among some of the behavioral characteristics of some of these other conditions.
- Here’s the big one. THE STIGMA. FASDs are preventable and thus the mother is to blame for the difficulties of the child. I mean, why should a system be in place to help the children? We told those mothers that drinking during pregnancy was bad for the child.
I was just remembering back to his third session with his brilliant OT, when she realized that I was not M’s birth mother. I had to bring M2 along with us and the OT put it all together. I think about all the background info that goes into those reports that get handed around from doctor to doctor to therapist. M’s birth history reflects the troubled nature of his first mom’s life. I felt offended that the OT thought that she and I were one in the same. Do I look like an addict or a recovering addict?! And then upon reflection, I realized, she was being professional, treating me with the same respect she would any woman struggling to raise a child with behavioral difficulties. She wasn’t judging my appearance and comparing it to the words on the history reports. She was just helping M and helping me learn to parent M as well. I was the one stigmatizing his first mom. I was the one holding the judgments over her choices. To be honest, I am angry at M’s first mom for her choices. I am angry that M has challenges directly as a result of her addiction. It makes me understand the real problem of the stigma of FASD. It’s almost like saying, “you caused this and you, by yourself, have to deal with it.”
There are many moments where I think about first mom’s life and have compassion for her. I get it, I have known people personally that have struggled with addiction. To know their story is to understand their struggle. However, our society has trouble when we group addicts together. We don’t understand them as a whole, their problems are too complex, trauma, PTSD, mental illness, homelessness, etc. I think it is also why our rehabilitation methods are generally unsuccessful. It is easier just to blame them for their individual bad choices and consider their problems a drain on resources. Similarly, we don’t automatically help kids with FASD because then we’d have to admit that we’d also need to provide much greater emphasis on preventing FASD.
Time to stamp out stigma! http://www.nofas.org/stigma/