May 19

FASD 101/Our story

adrienne_slideFASD stands for Fetal Alcohol Spectrum Disorder. In-utero exposure to alcohol is the number one preventable cause of developmental and intellectual delays in this North America. Conservatively, FASD impacts 2-5% of all births, and causes permanent, irrevocable and untreatable brain damage. For children in foster care or who are adopted from Russia or Eastern Europe, the number is at least 17%, and may be as high as 70%. A person with FASD is likely to need services and support  for his or her entire life. The lifetime cost for these services can be 2 million dollars.

My almost 12- year old son is handsome, intense, funny, strong-willed, loving, and he also has FASD.

If you met him you’d think he was darling.  Big green eyes, wavy blond hair. Nice manners – at least in public. A great fisherman. A good conversationalist – at least with adults. We love him. Clearly. But if you know anything about FASD at all, you know that because of brain damage that occurred when his birth mother consumed alcohol during her pregnancy with him, he is very, very difficult to parent. If you didn’t know him like I do, you’d think he was oppositional, defiant, manipulative, angry, and poorly behaved. You’d call him immature, a liar, and a thief. You’d think he was spoiled, lazy, and out of control.

None of that is true.

None of this is his fault, but he gets blamed. None of this is my fault, as his mother, but I get blamed. His behavior can sometimes look like the result of bad parenting. But it’s not. Far from it. He has brain damage. He is disabled. But you sure wouldn’t know by looking at him – which is more of a curse than a blessing, if you ask me. He looks “normal” so people, including me, expect that he should act “normal.” But that doesn’t happen very often. Or at least not with intense effort.

FASD is a spectrum disorder, meaning that some children are extremely impaired and in others it’s not as disabling.  On the far, most disabled end of the spectrum are people with profound intellectual disabilities and/or serious physical problems. On the less disabled end are children who look perfectly “normal,” but whose behavior and ability to function is more like someone half their age. Some children with FASD have low IQs. Some have high IQs. All are developmentally delayed and most have difficulty in adaptive behavior, which is what determines a person’s ability to be self-sufficient.

My son doesn’t have any of the serious overt physical impacts caused by FASD, except for some subtle facial features that 10% of folks with fetal alcohol exposure also share, but he has every brain-based impact of the disorder. Doctors have diagnosed him with ADHD, Sensory Processing Disorder, Oppositional Defiant Disorder, poor working memory, mood disorder, developmental delays, borderline intelligence, and slow auditory processing. Despite that list of diagnoses, the reality is that all of these behavioral labels are part of the brain damage he experienced in utero. Instead of looking at each separate diagnosis it’s far more useful to look at his brain as a whole. The brain controls behavior. His behaviors are symptoms of his physical disability. Continue reading

Dec 01

Oppositional

 

oppositional-girlThis is a re-write of a post I first published on this blog about 2 1/2 years ago. At the time I was just starting to understand fetal alcohol spectrum disorder (FASD) and what it really meant for my son and my family. 

The first time I wrote this I was coming to an understanding of what “NO” meant when my child said it. I had started to see that it wasn’t simple opposition. I still saw it as him trying to get negative attention, which isn’t my current interpretation of his behaviors. At the point I wrote the original post I was starting to understand what actually worked for my child, but I was still missing the WHYs: at that time I didn’t have a very complete understanding of his brain differences and how the NOs fit into all of that. I’ve updated this post to reflect my new understanding of FASD, my child, and the primary and secondary characteristics of FASD.

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My child has a default setting, and it is NO.

If I didn’t know better, I’d say he had ODD, or oppositional defiance disorder. Many experts – psychiatrists, psychologists, therapists, and others – have suggested he has ODD in the past. He certainly has all the characteristics – but in reality he has FASD, fetal alcohol spectrum disorder. What looks like ODD is a result of chronic frustration from living in a world that expects “typical” behaviors from an atypical brain. Saying NO is what he does when confronted with people expecting more from him than he can actually do. Being angry and sad and frustrated are actually normal responses to chronic misunderstanding. So labeling him with ODD is not very useful as it doesn’t lend understanding. It simply describes behaviors. It doesn’t look at the WHYs, and I’m not sure that it looks at the WHAT-TO-DOs. In my experience, understanding the WHYs is what drives the WHAT-TO-DOs.

So here are the WHYs:

When I, and other people who train about FASD and the brain, talk about FASD we often split up the behavioral symptoms of brain dysfunction into 3 different groups. This is based on research done by Ann Streissguth and others, and described by Diane Malbin, my mentor and trainer.

First are the primary characteristics of FASD. These are directly related to brain differences and although they vary from person to person, they include slow processing, problems with memory, sensory differences, impulsivity, developmental lags, or dysmaturity, difficulty with language and communication, poor executive functioning, and difficulty with abstract thought. Each of these brain functions show themselves behaviorally. The person with slow processing may not be able to answer questions quickly, which might look like the person is ignoring the question, or ‘not listening.’ The person who is dysmature and who has language difficulties may be able to superfically engage in conversation at his/her chronological age (due to mimicking or good expressive language skills), but may have little understanding of the content of the conversation, leading others to believe he/she is “getting it” when they are not. Later, when the person with FASD is supposed to remember the conversation or apply what he or she has learned and cannot, it is interpreted as deliberate and willful disobedience.

We help the person with FASD by understanding brain differences, accommodating their very real physical disability (because the brain is part of the body, right?), and structuring their environment for success – just as we do for any other physical disability. We quit assigning motive for what they cannot do. We give them the benefit of the doubt.

Secondary characteristics – like what looks like ODD – are behaviors that result when primary characteristics are misunderstood as being on purpose, intentional, or manipulative. If a person’s needs aren’t met, that person gets frustrated, angry, and shuts down. If this happens time and time again, and if that person is punished for things he or she simply cannot do, frustration and anger increase exponentially. This is a normal response to having one’s needs be unmet.

Tertiary characteristics of FASD are the very unhappy endings of chronic misunderstanding and frustration: jail, homelessness, addictions, and hospitalization.

It’s really important to understand FASD in this way – it’s not a mish-mash of all the symptoms. It’s not an inevitability that the person with FASD will become an addict or have to go to jail. It’s primary differences in the brain, what happens when those differences aren’t understood and needs aren’t met, and what can happen when those needs aren’t met over a long period of time.

Let me explain, using my child, and all his NOs, as an example.

  1. Primary characteristic: he is highly impulsive and so often says the first thing on his mind. Because he often can’t do as asked, the first thing on his mind is often NO, whether or not he is able to meet the request.
  2. Secondary characteristic: he is fearful and anxious about new things, and this expresses itself by a rejection of new things, leading to NO.
  3. Primary characteristic: he has trouble processing situations and conversations rapidly. He uses NO as a place-holder, a way to buy himself time to understand what’s being asked of him.
  4. Primary characteristic: he’s dysmature, so while many children outgrow the NO at age 4 or so, he’s really not there yet.
  5. Secondary characteristic: when he’s feeling most frustrated, he combines the NOs with name-calling, the phrase, “You are mean,” and sometimes crying and tantruming and throwing things to  communicate how he’s feeling.

The primary characteristics are how his brain works. The secondary are the reactions to dissonance between expectation and reality. We can’t change the primary characteristics, but we can change our OWN REACTIONS to the secondary and change his environment for better success.

Here’s how this works in real life:

Continue reading