Aug 01

Disassociation/Distraction

(c) David Morris, flickr

(c) David Morris, Flickr user

A couple of years ago I started another blog about my life with a child with FASD but I eventually abandoned it to get a little more focused on other things, including this blog, more books, and becoming a trainer and parent coach, specializing in FASD and other Neurobehavioral disorders. This blog post was from 3 years ago when my son was 9. What’s funny is that nothing has changed. NOTHING. I’m not sure what particular part of the brain is involved in being self-aware, but it still hasn’t activated. We could have had this conversation yesterday – about camp, homeschool playgroup, or anywhere else he came into contact with another human being.  ~Adrienne

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This morning my dearest darling boy said two things to me about the kids at his new school, which specializes in kids with special needs:

“There’s this girl at my school who makes noise all day. She saysUuuunnnhhh, Uuuunnnhhh, Uuuunnnhhh all day long.”

Oh brother, I thought. He really doesn’t get it, does he?

I said: “You make noises all day long. Maybe not at school, but at home. IsUuuunnnhhh, Uuuunnnhhh,Uuuunnnhhh any different than screaming SHOT THROUGH THE HEART/YOU’RE TO BLAME/YOU GIVE LOVE/A BAD NAME over and over and over and over again? All day long?”

“I don’t do that,” my baby said.

“Yes, you do,” I said. “You also do this:Whooooop! Whooooop! Whooooop! Whooooop! a lot.”

“I don’t do that.”

“Yes, you really do.” Continue reading

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

May 02

Repost: Hello, My Name is Eve, part one: What were you expecting?


This repost is by Kay Marner, the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. Through editing the book Kay found a pattern in the experience of parenting children with neurobehavioral special needs. She frames it as the experience of an everyparent, “Eve.”

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When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.

Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that explained every stage of development, and answered every possible question—sometimes before we knew to ask it? Continue reading

Apr 30

Repost: Detachment Parenting, or Confessions of a ROBOT mama.

I first wrote this post 3 years ago. My son had been newly diagnosed with fetal alcohol spectrum disorder (FASD) and I knew enough about him and enough about FASD to know that his behaviors weren’t completely under his control, and that the best thing I could do was not to respond. Since I wrote this I’ve learned a great deal more about FASD, and am an FASD educator. I’m happy to say that by using the 2 strategies I explain in this post, as well as providing accommodations and environmental change for my son, much of these behaviors have diminished. He’s also 3 years older, and as John Holt said (a rough paraphrase) in one of his wonderful books about homeschooling: ‘Never let anyone else take credit for a child’s development that occurs simply because the child is getting older in the world.’

lady_robotI have something to admit: sometimes the very best tool I have a parent is my ability to detach. Or at least pretend to detach, which is just as good when it comes to managing my easy-to-love-but-hard-to-raise child, but which isn’t particularly healthy for me: stuffing and stifling one’s feelings is not generally thought of the most emotionally healthy activity, you know.

What I mean by detaching is this: if my child screams, swears, or throws stuff at me, tantrums on the floor, demands x,y, or z,, perseverates, says “what do you mean?” over and over and over again in response to simple statements, runs from me when I’m speaking, interrupts while I’m having a conversation with someone else, talks nonsense when my husband and older son and I are conversing at dinner, destroys his toys, destroys other people’s toys, takes things that don’t belong to him…I do my utmost to remain calm. All of these behaviors are related to the brain damage he experienced as the result of fetal alcohol spectrum disorder. None of them are on purpose. All of them are a response to his needs not being met…and all of them are profoundly difficult to deal with.

I have two basic strategies for managing these types of outbursts: Continue reading