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

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

Nov 12

Looking for joy! Sometimes us mommas of kids with NB special needs have to look pretty hard…

"Overwhelmed" by Ursula Vernon.

“Overwhelmed” by Ursula Vernon.

So y’all –

I have about a million blog posts in my head. I’ve been teaching a webinar on fetal alcohol spectrum disorder (FASD) based on the teachings of Diane Malbin, a FASD guru, my mentor, and my trainer, and there is so, so much I can share about the experience. It has been very humbling to present research-based approaches to parenting and helping a person with FASD and at the same time be parenting a person with FASD who is intensely complicated and putting all that I know/learned/am teaching to the test.

At the same time that I’m humbled and want to share what I have learned with you, since I believe it applies to all people with neuro-behavioral special needs, not just people with FASD, I am also feeling overwhelmed. Here’s why:

  • Each week I’m doing 2 webinars about FASD/other NB Special needs
  • Each day I parent my child with FASD
  • Each day I struggle with outside institutions (e.g. school) that don’t “get” my child, who read his behavior as a way to manipulate the system and get what he wants. In reality, his behavior is a clue to getting what he needs – which is not what they provide. So hard decisions are ahead for us.
  • Each day I work towards creating a non-profit to help families impacted by FASD: FAFASD
  • Each day I try to find more training opportunities so I can teach people what I know. You would think this would be easy, but people don’t know what they need to know automatically. It’s proven difficult to find training opportunities – even if I offer to do it for free. I’m available, by the way. Just email me: adrienne@fafasd.org
  • Each day I work on writing projects about NB special needs, which is what my publishing company publishes. Our next book is called The Resilient Parent, by Mantu Joshi, a dad to 2 children with special needs, a pastor, and a very wise guy.
  • And each day I log onto Facebook and read posts from parents of kids with NB disorders that occasionally make me laugh, but mostly make me worried and scared because of their desperation. I know we have a great community in the Easy to Love but Hard to Raise Facebook page, the FAFASD Facebook page, and the Mom’s View of ADHD Facebook page, but sometimes it gets to be too much for me. Adding to that the 300 of 500 “friends” I have on Facebook who are parents of kids with special needs and you can only imagine what happens when I log in with my morning coffee.

Overwhelm. I am overwhelmed.

So what’s the remedy to overwhelm? I can take a cue from my child, who routinely gets overwhelmed, which amps him up and makes him wild and uncontrollable. For me it’s the opposite: overwhelm makes me shut down.

I cannot afford to shut down.

When J. gets overwhelmed we remove him from the situation, we distract him, we make sure he has eaten good food, had enough sleep, and let him chill for a while. We try to think of things that will give him joy – but calm joy – not the joy that comes from jumping on a trampoline after eating 5 donuts until 10 p.m. (True story, don’t ask).

I need to do the same. Can’t really remove myself from the situation (although I have been spending less time on Facebook), but I can look for joy. Calm joy.

Now to figure out what that means!

Do you have any ideas?

Aug 05

What I did on my summer vacation, or Car Trip! Yay?

car tripIf you clicked on this expecting a list of suggestions for how to have a happy car trip with your behaviorally challenged child then I hate to break it to you: you’re not finding it here. My husband and I are in the midst of a 2-week car trip with our two boys, 11 and 14, and while there have been some true high points to the trip (Maid of the Mist at Niagara Falls thrilled me- yes, I am a true tourist in my own country) there have also been some super low, low points. Like having nasty wet paper towels thrown in my face at a restaurant. Like hours-long swearing fits in the car. Like constant bickering. Like my younger child’s complete and utter refusal to do anything other than what he wants to do with absolutely NO compromise.

Continue reading

Nov 17

The Village (You are NOT alone)

There are literally hundreds, if not thousands of people who are involved in my child’s life. At the same time I think it’s really easy to feel isolated as the parent of a child with the type of special needs that my son, Little J, has. His over-arching diagnosis is Fetal Alcohol Spectrum Disorder, or FASD, which includes behaviors similar to ADHD and mood disorders – what some people, including me, consider to be “invisible” disabilities.

If you are parenting a child with an “invisible” disability, like I am, and you go out in public and your child has a tantrum or an outburst or rages or otherwise acts up, you are instantly judged as a bad parent. People just don’t understand a child who looks perfectly “normal”, yet whose brain-based disabilities impact behavior and emotional regulation. I cannot tell you the number of times I’ve been told that I just need to spank my child – by perfect strangers and acquaintances alike. Family and friends don’t get it, and although they may care about you and your child they can also be quick to judge – based on assumptions they’re making about your parenting, or about witnessing isolated incidents, or through caring for your child for a couple of hours when he was “perfectly fine for me.” Professionals – even those whose profession is helping a child like yours – need to be educated about your child. And support is hard to find. Add that to the exhaustion and unrelenting stress of trying to find answers to your child’s problems as well as the day-to-day management of your lives and it’s easy to become a hermit. A lonely, stressed-out hermit. Continue reading

May 16

Taming the stress monster (If you can’t change the child, then change the environment)

As someone who has edited a book about parenting children with invisible special needs like ADHD, ADD, OCD, Anxiety, Autism, FASD, and any number of other alphabet-soup diagnoses, I’ve noticed something curious: people have started asking for my expert opinion about parenting.

I am the expert on nothing except stress, I say. And not in a how-to-overcome-it-and-lead-a-happy-life kind of way, either. As in, I am constantly stressed and since every time I seem to get over a particularly large parenting hurdle I see another up ahead. I have no real idea how to tame the stress monster that threatens to take over my life.

My son’s behavioral issues seem to come in cycles. Because of his processing problems and potential for sensory overload (all of which are due to prenatal alcohol exposure; he has fetal alcohol spectrum disorder), the more calm and contained we can keep things, the better. But then something happens, like we go on a trip, or we have a visitor, or my husband has to work a lot, or we go to a family party, or the seasons change, or they’re having a field trip in school, or what he thought we were having for dinner isn’t…and it’s an all-systems go moment for him, and the part of his brain that functions pretty well in calm moments stops – and the impulsive, sensory-seeking, wild mind takes over.

When he’s worked up it takes Herculean efforts on our parts to manage him. Tantrums, throwing things, screaming, impulsivity, swearing, arguing for the sake of arguing – and no real way to stop him besides physically removing him from the situation.

Every time something triggers him, his behavior triggers me. If he blows, I blow – maybe not always in the moment, because in the moment I have to deal with him – but I can feel my shoulders rise, my throat get tight, my head begin to throb, and unless I can handle the situation quickly the stress monster has me, and has me good. Even when the incident is over I can’t think of anything but what just happened, how I could have managed it better, and how terrible a mom I am.

Recently my son has been in a good cycle. At home we’ve been keeping it calm and predictable. I’ve had time to exercise, see friends, and have a little fun. My children have been getting along. My husband has been balancing his job and home better than he has in a while. I’ve felt like I had a handle on my life and my stress. All has been great, until…

Carpool. My son goes to a school for children with special needs – learning challenges, behavioral problems, and difficulty regulating their emotions. It’s a good fit. It’s also an hour from home.

Carpool usually is quiet, except when it’s not. And yesterday it wasn’t. I don’t know what was going on with them, but the minute they got together they started sniping, goading, and teasing each other.

All efforts I made to stop it, including asking them nicely, asking them not so nicely, threatening to involve parents, threatening consequences to my child, didn’t work. I was ignored. And we still had 20 minutes left in the car.

My guy escalated fast: he swore at the other two kids and threatened them, then pulled his fork from his lunch box, bent it in half, and waved it around. “I’m gonna shove this up your butt!” he yelled to one of the kids.

I pulled over.

I then took my child from the car and swatted his behind. I screamed, “What are you doing? Why are you acting this way?” He screamed, cried, then said if he had a gun I would be dead. We got back in the car.

For the last 20 minutes of the car ride there was complete silence. We walked into school, the kids put their lunches away and went out to the playground, and I burst into tears. The school director gave me a sympathetic ear but it did little to calm me.

The rest of the day I was a mess. I couldn’t think of much else besides what happened in the car and how I completely mishandled it. How did spanking him solve the problem? How did screaming? But what would have been better? Completely ignoring them? Allowing him to continue to scream obscenities? Allowing them to continue to tease him and goad him and grin when they got him to explode?

I have no answer. And I’m not writing this in the hopes that someone here can tell me what I should have done. I can’t change what happened. I can only try to change what will happen. And part of that is taking a break from carpool for a while – a good long while. Several extra hours a week driving in peace is worth it to me, as is keeping my boy – and me – calm. Anything to keep that stress monster away.

(Image courtesy of flickr user autumn bliss)

Jan 11

Repost: Caregiver Stress and the ETL child, part 2

See part 1 here. Both parts were originally posted 5/10/11.

So why is divorce more likely in ADHD families? And why are parents of children with behavioral issues more stressed out than other parents?

Ha ha! I’m sure we all know! Because it’s really, really, really, really hard to parent a child with behavioral issues! If home, the very place that’s supposed to be a place of respite, calm, and nurturing turns into a constant battlefield at worst, or at best a place where your child’s behavior needs to be carefully managed, of course it’s going to impact a marriage. Add to that money problems (therapists, psychiatrists, OT, educational advocates, and medications all cost $$$), disagreements in the best way to parent the child, and lack of decent time together (because it’s so hard to get a babysitter!) and it’s really no wonder that a marriage suffers.

Continue reading

Dec 15

“Mine!” “I want…!” “More! More! More!”: More than the usual behavior problems of an alphabet-soup-labeled ETL child

I was less patient than normal this morning as I pushed and prodded my 11 year old ETL daughter, Natalie, through her getting-ready-for-school routine. Continue reading