I just read a great article that gives a perfect summary of what FASD is.
It’s here: “The Invisible Havoc of Prenatal Alcohol Damage,” by Dr. Kathryn Page, published in The Journal of the Center for Families, Children, and the Courts, 2002.
It could have been written about my baby. It could have been written about my family.
If you are interested in FASD, think your child has been impacted by prenatal alcohol exposure, or KNOW your child has been impacted by prenatal alcohol exposure, are related to or friends with people parenting a child with FASD, it’s worth a read.
So much of it applies to us.
Children with FASD have a great many more needs,difﬁcult for even the most energetic, skillful, and devoted parents to meet; the consequences of not meeting those needs are dramatic and destructive. Parents with less than optimal resources are likely to be caught in snowballing chaos and tension as their FASD children explode, don’t obey, don’t learn, don’t talk, and begin to act “bad.” Without therapists, respite care (trained child-care providers available to take over for hours or days at a time), support groups, medical insurance, or good schools, the parent of a child with FASD must contend alone with an incomprehensible and intense source of unpleasantness.
That part of the paper is about how people living in poverty don’t have access to those supports, but I can assure you, people living comfortably in the middle class with private health insurance don’t have access to those supports either. At least not where I live. It varies state by state, country by country, but in North Carolina, U.S. of A., a child with FASD, with borderline intelligence, with mood disorder NOS and PDD and ODD and ADHD whose parents make too much money to qualify for Medicaid may be able to find a support group, may be able to find a therapist for themselves, and hopefully lives in a school district that will work with them, but respite care? Ha ha. Nope. Our family, solidly middle class, makes waaaaaayyyyy too much money for respite care (and private insurance that middle income families like ours can afford certainly doesn’t pay for it), and even if my child were to be considered for the Medicaid waiver, the wait is 2-3 years long to qualify, and it’s frozen now anyway because of budget cuts. And personally, while I’ve found a therapist I like for myself, I haven’t found anyone who can get through to my little pumpkin, and our local school district didn’t give a SHIT when I presented them with all the psychoeducational testing we had done. Heck, they didn’t give a SHIT when their own standardized testing showed him at 2nd percentile for math and 6th for reading. They were content with just sending notes home EVERY DAY about how badly my child was behaving.
But if you’ve read this blog I don’t need to rehash that same old story…
Back to the paper. Here’s more:
Several diagnoses jostle to explain what is actually one tapestry, albeit a wide and varied one, of dysfunction resulting from prenatal alcohol exposure. Attention deﬁcit/hyperactivity disorder is the most common diagnosis given to children with FASD, with oppositional deﬁant disorder close behind. Bipolar disorder is also frequently diagnosed, as is sensory integration disorder. Attachment disorder is often diagnosed in children with FASD, even those who were adopted at birth. Exhausted and confused parents take their FASD children to clinician after clinician, looking for an explanation that ﬁts their children, seeking treatment that might ﬁnally do the trick.
Yes. J’s first diagnosis was ADHD and ODD, and then we moved on to “mood disorder of a cyclical nature” (ummm, doesn’t that mean bipolar?), and sensory processing disorder, and while he’s never been dx’d with attachment disorders this is because I’ve never taken him to an attachment specialist. Clearly, he has attachment issues, especially when it comes to his mean old mama.
Knowing—or even hypothesizing—the underlying cause of behavior problems to be prenatal alcohol damage gives the family, the clinician, and often the child a sense of relief, as this provides a context for the multitude of peculiar, even unfathomable,behaviors as well as the more categorical ones—theAD/HD and so on. Knowing that the child’s problematic behavior stems from a whole network of brain damage and not from deliberate disobedience (or just related to unitary sets of symptoms as described above) releases the family from its relentless and futile attempts to get the child to “just stop it.” Given resources that are well versed in brain damage, especially prenatal alcohol-related damage, the family can redirect its efforts toward teaching coping skills, changing the environment, and supporting the areas of strength.
Yes. This is why, people, you need to take your child to a FASD clinic. Even though I knew (in my head and in my heart) this was his issue for years, the diagnosis made it crystal clear. Once we stopped ascribing motive to our son’s behavior it changed our whole family dynamic. Doesn’t mean he’s let off the hook for doing unacceptable things (although we do try to keep his environment FASD friendly), but it means that HE is no longer bad. It’s not that he WON’T comply, it’s that he CAN’T.
At least we try to keep this in mind. Sometimes it’s very, very hard. Especially when he calls me a bitch at 6:00 in the morning and tries to kick me. Or when every single request or question (even the nice ones, like: Which movie to you want to go see? or Do you want a cookie? or Let’s decorate the Christmas tree) is met with resistance and rudeness. This is when calmness, control, and parental detachment come in handy. Or leaving the room.
FASD may lead to behavior that manifests as ODD in youth. When a person can’tcommunicate his or her needs very well, can’t ﬁgure out the cues or feelings of others, doesn’t get the “big picture,” is often physically uncomfortable, does badly in school and at home, can’t organize or even remember tasks or materials—and has everybody yelling at him or her to just try harder—we have arecipe for resistance and deﬁance.
Yes, we do.
If there has been prenatal alcohol exposure, this cluster of symptoms [meaning pleasure from hurting those they love] may manifest as attachment disorder, but the roots of this disorder will be exacerbated by, if not solely a result of, organic brain damage. Without recognition of such organicity, treatment may be less successful or even backﬁre, as the lack of bonding would be understood to be of purely psychological origins and treated as such, ignoring any alcohol related aspects as mentioned above—frustrating for all participants in any such therapy.
This is a very important part of the paper. I’ve read several books on attachment, including one suggested by our FASD clinic, and I find the advice about how to connect with your attachment-challenged child completely counterintuitive when dealing with a person with organic brain damage. I actually find the advice harmful as it relies so much on consequences (natural or otherwise) for behaviors that the “experts” are assuming are under the child’s control. So much of what my child does that can “read” as attachment problems with a psychological reason behind them (and therefore potentially under his control) is actually a result of brain damage caused by fetal alcohol exposure. Assuming that if only he were only attached to us (or wanted to be) he would stop the constant rudeness, fight-picking, etc., is like telling him that if he only WANTED to he’d be able to do double-digit subtraction. It’s not a WANT. It’s not under his control. It’s a CAN’T.
The brain-based traits of inﬂexibility and explosiveness are particularly dangerous and often occur together, igniting an all-too-common response to frustration: “If at ﬁrst you don’t succeed, throw that sucker across the room!” This behavior pattern, identifiable in early childhood, does not lead inevitably to a lifetime of violence, but it certainly makes thoughtful, productive responses less likely.Good parenting in the face of such habitual reactions, especially parenting a frustrating and difﬁcult child, becomes impossible.
Thank you, Dr. Page.
Children with prenatal alcohol exposure are difﬁcult for anyone to raise, as well-prepared adoptive parents attest. A child who is quick to get upset, slow to obey, impossible to calm or console, generally complaining about some discomfort or other, and often sick would be hard enough to tend without the rage disorders, lying, or inability to read social cues,remember yesterday’s learning, or express needs. These children rarely reﬂect back the calm, happy, interactive impression of a well-cared-for child even with the best parenting. This makes it very difﬁcult to keep the bonding cycle going—if indeed it ever began.
Sigh. All true.
Adoptive parents raising children diagnosed with FAS/E report signiﬁcant depression, exhaustion, and anxiety. When these desperate parents seek professional advice, clinicians almost invariably suggest another parenting class or chore charts with gold-star stickers.
Oh. My. God. Sticker chart. I can’t even talk to you about sticker chart.
The rest of the paper talks about the future for our kids and different programs that have worked to help. It’s scary for me to think about the future, honestly. I know that those of you parenting kids with FASD know what I’m talking about. If my child’s development is never going to progress past the level of early adolescence, how will he ever live on his own? If his IQ, at 6 pts above MR, is too high for him to be classified as Developmental Delayed, will he really be expected to make his own living? Will he be living with us, still calling me a bitch and making giant messes in my home, when he’s 45 and I’m 80? Or will he run away when he’s legally an adult (but mentally an 8 year old) and become a drug addict and father babies with women who themselves are drug and alcohol addicts?
I know those are really horrible things to write. But they’re my real fears. And please don’t tell me that bad things can happen to all children, or that GOOD PARENTING will solve these problems. Because when it comes to kids with FASD, good parenting helps, but in the end I think it just becomes this: we did the best we could. Which I guess is all you can do.