A Square Peg, A Round Hole

This past week I went to a training by Diane Malbin. I have so much information now! So much to write about! A book, practically.

A book, in reality.

But more on that later.

One thing I came away from the training with was further confirmation of the need for parental support for people raising kids with FASDs.

But more on that later.

And also the need to remove the blame/shame/fault focus when talking about people with FASD. Yes, prevention is important. But prevention is separate from what parents of kids with FASD need in every day life. And people living with FASD don’t need it either. And birthmoms sure don’t need it, especially not from their support systems. I’m betting they do more shame/blame/faulting on their own than anyone else can shovel out.

It’s hard, right? Many people who are adoptive or foster parents have a lot of anger towards their children’s birth moms if there was prenatal exposure in utero. I am not one of them (yes, more on that later) but I can see how it would happen.

It’s very complicated. How we feel about mothers, addiction, alcohol – and by “we” I mean the parents and kids in the situation, but I also mean “we” as in society, or our family unit, or our town, church, etc. – really colors our emotions. Emotions which, by the way, are no doubt strained by a challenging parenting situation.

But I think that in order to really move forward we need to take it out of the equation. Here’s a great post by Kerry at I Know What We’re Gonna Do Today on doing that. She, like me, has stopped mentioning that her FASD impacted child is adopted when she talks about his FASD. I’ve done the same. 99% of the time it has nothing to do with what’s going on, anyway, and in the past I’ve only mentioned it so people wouldn’t judge me.  But that was born of my assumptions (still probably correct) that people *would* judge.

At most, me mentioning J’s adoption is irrelevant. And at worst, it could be a chance for me to educate people. I guess we’ll see what happens.

(with help from the Keep Calm and Carry On generator).

It’s been far too long since I wrote a post on this blog! It’s not like life with my boy has changed any. I supposed I’ve been busy with other things.

First, did you know I co-edited a book? It’s called Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. It came out Feb. 1 and I’ve been in the thick of marketing the sucker. “Marketing the sucker” includes becoming a regular contributor to a couple of online magazines, including specialneeds.com, Special-ism, and starting very soon, I’ll be a contributing special needs blogger to one of our local TV stations’ websites.

I’m also giving talks about the books, about FASD, about anything, really! On April 19 I’ll be driving out to Virginia Beach to talk to parents at Chesapeake Bay Academy, and I’m looking hard for other such opportunities. In the fall I’m hoping to do some library visits with our crew of writers, and I already have something booked (date not yet set) for Columbia, SC. I’m also giving the opening address at the Happy Mama Conference and Retreat in July.

So I’ve been a little busy. And my boy is okay. The change of seasons is always rough for him but now it seems like we’re settled. Always a good thing.

This was previously posted on Easy to Love but Hard to Raise.

When I signed up to write a Valentine’s Day blog post on this blog, I truly intended it to be a list of all the ways I love my little bundle of joy. Seriously. There is a lot to love, but because of this morning I am not feeling it. I’m not feeling love. At all. Just tolerance. And only because he’s my child. If he were not my child, if he were a boyfriend or a friend or even someone I was married to or another family member then this relationship would have ended a long time ago.

I know that sounds pretty shocking. I’m kind of shocked writing it. But it’s the truth. Because my child has brain damage due to in-utero alcohol abuse by his birth mother, and because he experience trauma before he came to me, he has some problems with attachment. Not full-blown Reactive Attachment Disorder. Maybe half-blown Reactive Attachment Disorder. Because most of the time he can be a part of our family to the best of his ability, given that he does have significant brain damage and social skills problems and impulsivity and a mood disorder. But sometimes he can’t. Most mornings he can’t. And this morning, oh, THIS MORNING, this VALENTINE’S DAY MORNING, he really, really, really couldn’t.

Here’s how it went down.

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 says Uuuunnnhhh, 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. Is Uuuunnnhhh, 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.”

The next thing he said is this:  ”I don’t like autistic people. I don’t want autistic people riding in our car.”

He said this because we’re carpooling with an additional child this afternoon. I don’t know if she’s autistic or not, frankly. But I do know that the child we carpool with primarily IS autistic, and my baby knows this. He also likes our carpool friend. He’s even said our carpool friend, let’s call him Bubba, is his best friend.

“What about Bubba?”

“He doesn’t count.”

“I think you just don’t want someone new in our car.”

“No, I don’t like autistic people and I don’t want them in our car.”

“What if someone said they don’t like you because you have FASD or ADHD? What if they said they didn’t want you in their car?”

“I’d say they were stupid and I would kill them.”

“Well, can you see how it’s not nice to autistic people to say you don’t like them and don’t want them in our car? Can you think about being kind and accepting to people like you want them to be to you?”

“What? What do you mean?”

“You want people to like you, right?”

“Duh!”

“Your brain works differently than many people, right?”

“Yes. You too, Mommy. You’re stupid and your butt is big.”

“Focus, please!”

“SHOT THROUGH THE HEART/AND YOU’RE TO BLAME/YOU GIVE LOVE/A BAD NAME.”

“I want to finish this conversation.”

“Can I have cheese?”

“Please. Can we talk about this?”

“Whooooop! Whooooop! Whooooop! Whooooop! I’m outta here!“

( 8 a.m. Winter break. It’s been winter break – meaning no academics for anyone, homeschool or not, for over a week. Our house in central NC. Weather is beautiful outside. Lots of toys, games, new tools for Xmas. Plenty to do. Our family rule: limited electronics. Not good for the brain.)

My baby: Mommy, can I watch TV?

Me: Not right now. You can only watch 2 hours and if you start now you’ll be bugging me about it the rest of the day.

My baby: I hate you. You’re mean.

(8:40 a.m. Still winter break. All setting/scene details same as before).

My baby: Mommy, can I watch TV?

Me: NO. Don’t you remember what I just said?

My baby. No. What did you just say?

Me: I said no TV right now.

My baby: You’re mean. You’re a bitch.

(9:10 a.m. Still winter break. All settings/scene details same as before).

My baby: Mommy, can I watch TV?

Me: Stop badgering me.

My baby: Can I? Can I? Can I?

Me: Listen to me. Look me in the eye.

(My baby looks at the ceiling, looks at floor, then looks his mother in the eye).

Me: YOU CAN’T WATCH TV NOW.

My baby: Okay. Okay Mommy. Sorry for calling you a bitch. Okay.

Me: Thank you for your apology.

My baby: When can I watch TV? Can I watch TV now?

Me (takes deep breaths, wonders where she’s gone wrong): NO. How about this? I’ll give you a time.  How about you can watch TV after 4 p.m.

My baby: When’s 4 p.m.

Me: Later today. After lunch Waaaay after lunch. Before dinner.

My baby: Okay. When’s 4?

Me: Go look at the clock.

My baby: I DON’T WANT TO LOOK AT THE DICKHOLE CLOCK!

Me: Well, if you look at the clock you can see what time it is now and when it will be 4. I will show you.

My baby: THE CLOCK IS STUPID. YOU TELL ME WHEN IS 4.

Me: Okay, I’ll tell you when it’s 4.

My baby: How long is it until 4?

Me: About 6 hours.

My baby: How long is 6 hours?

Me: After lunch. Almost before dinner. Go look at the clock and you can watch to see the time pass.

My baby: THE CLOCK IS A SON OF AN ASS. AND YOU ARE A BIG FAT BITCH.

Me: Go away from me.

(9:30 a.m.  All settings/scene details same as before)

My baby: Mommy, is it 4?

(10:12 a.m.  All settings/scene details same as before)

My baby: Mommy, is it 4?

(10:41 a.m.  All settings/scene details same as before)

My baby: Mommy, is it 4?

(and so on, and so on, and so on…)

I have mixed feelings about the emphasis in FASD advocacy groups place on prevention. Prevention is very important, but for families living with someone with FASD, or individuals themselves with FASD, support, education, and resources are more important as efforts towards prevention are too late. Since that’s who I am (a person caring for a child with FASD), that’s what I want to see. In the U.S. there’s practically NO awareness of FASD and what it’s like to care for or be a person impacted by fetal alcohol. It’s something that is needed so badly, yet it seems most of the money is put into PSAs about not drinking while pregnant.

I also tend to feel that most of the women having children with FASD fall into 2 groups: chronic alcoholics and women who don’t know they’re pregnant. And I’m not really sure if those groups can be reached by PSAs about not drinking while you’re pregnant. Chronic alcoholics won’t care, and people who don’t know they’re pregnant won’t even know. Women who know they’re pregnant already have the message that they shouldn’t drink alcohol, right?

Um. I stand corrected. Not in thinking that there needs to be more support, advocacy, and education for those who care for and work with people with FASD, along with help for people with FASD themselves, but in that thinking that educated, intelligent women already have the message.

Yesterday a good friend told me about 2 women we know, educated, professional women in their 30s who are 4 months and 8 months pregnant who were drinking wine at recent parties. One of them was told by her doctor that since she’s so far along (8 mos) that drinking won’t hurt the baby, and the other was told by her midwife that a glass of wine here and there won’t hurt her or her baby.

I am SHOCKED by this. SHOCKED.

Then, my very good friend, at my SHOCKED response, said that she had heard that it’s only women who drink their whole pregnancy whose babies have problems. This, from the friend who won’t use any cleaning product that’s not 100% naturally derived and who only eats organic food.

The SHOCKED-ness continued. I told her the truth about alcohol consumption during pregnancy – ZERO alcohol is the only safe level. And I told her those women’s doctors and midwives should be fired. And I told her those women were welcome to call me when their children started having behavior and learning problems and weren’t able to grasp cause/effect.

I wonder, had I been at those parties, what I would have said to them?

Oh lordy.

From what I’ve read about FASD, it’s important for many children and adults who have been prenatally affected by alcohol to have help by way of an “external brain.” This means they need someone – a caregiver, a parent, a spouse, a paid companion – to help them make decisions and function in life.

But what if, like my 9 1/2 year old son, the person actively rejects and fights against that external brain?
He’s a child, clearly, and so he needs parenting. Because of his FASD he needs some pretty intensive parenting. In his case, because he’s a child parenting = the external brain. Things need to be made crystal clear. We have to be completely consistent all the time. Consequences – not necessarily punitive, but always natural – need to be spelled out, then doled out when he does or doesn’t do the requested and expected action. Over and over and over and over again.

Good consequences are received as his natural right, and he often tries to push it further, ask for more. And over and over and over and over again I am called a bitch, a meanie, stupid, and screamed at for any consequence he doesn’t like.  I know that it’s a function of his brain dysfunction, but it’s really hard to take.

Case in point: last night when J’s dad and I went up to his room to say goodnight we found a bedroom that had been trashed. Completely trashed. We have a rule in our house: no electronics without a clean room. Last night before bed we both remarked on the extreme disaster that was his room and reminded him that in the morning it would have to be picked up in order to have any electronics time.

J. doesn’t have that much stuff in his room. All his drawers and bins are clearly labeled.  Yes, he got some Christmas presents but they fit within the system already in place. And yes, we have helped him clean his room many, many times. He has a chart to remind him the tasks required in room clean-up. He got a verbal reminder of what he needed to do to clean his room. He has successfully picked up his room multiple times in the past year.

This morning he came downstairs and told me he wanted to play with his electronics. I reminded him his room needed to be picked up. He told me it was. I told him I would only check once and he should make sure everything on his list was complete.

He went to his room for 5 minutes. Again, came downstairs and told me his room was clean. I asked:

“Is your bed made?”

“Are your clothes off the floor?”

“Are your toys in their bins?”

“Are your books on the shelves?”

“YES! YES! YOU’RE STUPID! WHY ARE YOU SO MEAN?”

“I’m only going to check once. Maybe you should go up again.”

“NO. IT’S READY.”

“If I go up and it’s not cleaned up, you can’t watch TV or play with electronics all day. Are you sure?”

“YES! QUIT BEING SO MEAN!”

So I go up, and there’s stuff on the floor, the bed is not made, toys are not put up, and books are not on the shelves.

So no electronics, which makes me a DICKHOLE, and a SON OF A BITCH! And I think he threw a toy at me.

This is a normal scene in our house, except in the past I’ve gone up and checked his room over and over and over again. I’m feeling pretty done with that, especially when it’s a task he’s done before. I understand about patience and how my child has brain damage, but I’m also really tired of the anger, rudeness, and general abuse I get from him when I ask him to meet simple expectations. I also worry a lot that this is only going to get worse.

So – FASD experts. How do you function as an external brain to someone who doesn’t want your help? How do you maintain patience and kindness and understanding when your child is rude and abusive to you?

UPDATE (10 minutes after writing):

While I was typing out this blog he had gotten his electronic game thing out of its time-out spot and was hiding in his closet playing it. Nice. How can I keep from getting angry about this nonsense?

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.

This:

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.

Here’s more:

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.

Here’s more:

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.

More:

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.