This blog is my place to vent and share resources with other parents of children of trauma. I try to be open and honest about my feelings in order to help others know they are not alone. Therapeutic parenting of adopted teenagers with RAD and other severe mental illnesses and issues (plus "neurotypical" teens) , is not easy, and there are time when I say what I feel... at the moment. We're all human!

Wednesday, October 25, 2017

Why Won't My Child Just Behave?!


Kids do well if they CAN. This has nothing to do with whether or not they want to
Our role is not to make him want to, he already does. Our role is to figure out what is getting in his way, and help him. Changing our focus to finding out what is challenging him, helps both the child and ourselves. - Dr. Ross Greene
I know that, for myself, understanding why my child is acting this way makes it feel a lot less like a personal attack. It's  much easier to feel empathetic, and I'm less likely to be personally triggered by it. (For help figuring out how to achieve this state, check out this post - Finding the Joy)


Identifying the Challenges 

We don't always know why children (especially children of trauma) act the way they do.  It’s possible that they just want to watch adults get all agitated, maybe they want adults to fight to distract them from the child (and thus avoid conflict), or they're trying to recreate the chaos that their brains are used to - often they are "pickled" in adrenaline (or alcohol) en utero.... 

Age-Appropriate Parenting


Trauma can cause significant delays in development (emotionally, socially, intellectually...).  Frequent moves and other traumatic life events can also cause delays or even get them stuck at the age the trauma occurred.  Emotionally "triggering" events can cause a child to regress to a much younger age.  Most kids with PTSD (and brain damage from RAD) have a tough time with processing, memory, object permanence, emotional regulation...  



Expecting a child to "act his/her age," can cause frustration and anger for both of you.


From age 2-6, children are in the "Preoperations" stage which means they create meaning through fantasy.  They are very visual and must touch or feel everything.  

Object Permanence
Kids with arrested development at the Preoperations stage (which is common for children of trauma), are not able to understand how we can infer things without seeing them. If you can't see it, Mom, it didn't happen. You can't know.  Let me say that again, if you can't see it, you couldn't know!   (More posts on Object Permanence and Object Permanence (cont).} 

  • Toddlers (~2 - 3 years)
    Toddlers don't play with other children, but instead do what we call parallel play.  
  • Pre-schoolers (~3 - 4 years)
    It's not until empathy develops at age 3 or 4 that they start to be aware of their playmates' needs and feelings.  
  • Early School Age (~5 - 6 years)
    Magical thinking/ Distorted Reality
    Around age 5 or 6, children go through the "magical thinking" stage.  They can want something so badly that they believe it, so it is true. I firmly believe that they could pass a lie detector on this. It becomes their reality and I don't believe they even remember that wasn't how it happened. (More info on brain development including why kids Lie and Steal)

Concrete Operational Stage
6-10 years
Concrete/ Black and White Thinking – Children under age 10 are concrete thinkers, and their brain is not yet wired to grasp abstract concepts at all.  I tend to try to teach using examples and analogies (especially when natural or logical consequences don’t work).  My kids could NOT get it.  If we tried to talk about how they handled or could have handled a previous issue then they instantly were triggered into “fight, flight or freeze mode” because they felt they were being punished for this past transgression.  If I tried using an example or analogy, like the “Boy Who Cried Wolf, ” they just couldn’t generalize it to the situation. 

Children with arrested development at the Concrete Operational Stage (which is common for children with trauma issues), may not be able to learn from peer or role modeling (watching others to see how they handle situations) or natural or logical consequences, because often they can't generalize one situation to another). 


Formal Operational Stage
12 years - young adult
Thinking becomes much more sophisticated and advanced. Kids can think about abstract and theoretical concepts and use logic to come up with creative solutions to problems. Skills such as logical thought, deductive reasoning, and systematic planning also emerge during this stage.


How We Handled Age-Appropriate Parenting:

I try to parent based on the child's emotional age 
Chapter 1: Therapeutic Parenting Based on Developmental/Emotional Age
Explaining Age-Appropriate Parenting To Your Child

Age-Appropriate Therapeutic Parenting for the Adult Child





Discipline Versus Behavior Problems

Trauma, especially Reactive Attachment Disorder (RAD) can cause permanent brain damage and the brain has to be taught how to work around it 

(Think of someone learning English for the first time - if they start learning before age 3, they will probably have no accent.  Before age 10, maybe a slight accent, but they will have a lot of the nuances and colloquialisms.  As an adult?  You will always be able to hear that English was not their first language.)
Discipline problems (noncompliance, misbehavior) occur when the caregivers have not structured the child's environment for success or when parents are inconsistent (expectations or consequences), non-responsive, or inaccessible. When adults adjust their behaviors and attitudes, often children with discipline problems can be brought under control in as few as 3 to 7 days.
Behavior problems on the other hand lie within the child. These are persistent behaviors that do not disappear even with the best parenting (although good parenting can help to control the behaviors). These can include impulsivity, inattentiveness, and other behaviors like ADHD, FAD and immature behaviors associated with missing capacities in object relations.


YOU CANNOT EXPECT PUNISHMENT OR DISCIPLINE
TO "FIX" BEHAVIOR PROBLEMS!

Let me say that again.


YOU CANNOT EXPECT PUNISHMENT OR DISCIPLINE
TO "FIX" BEHAVIOR PROBLEMS!


Having behavior problems is like being born with poor eyesight. No amount of punishing or controlling is going to fix this problem. Glasses will help. However the parent will be responsible for taking the child for regular eye check-ups, teaching him how to care for his glasses, and restricting activities where glasses might break. The goal is that by the time the child is 18, he will be ready and able to take full responsibility for the care of his own eyes and glasses.


How We Handled Behavior Problems:

I try to remind myself that my kids are SCARED, and punishment for something that was out of their control (Chap. 2 Discipline vs. Behavior Problems), is not just mean, it is pointless. 

As children emotionally heal, you will most likely start to see some improvement in behavior problems. Therapeutic parentingTherapyMedications can help a child heal. In the meantime, we need to focus on empathy

I can hear you thinking, "My kid's behavior was horrible today! He doesn't deserve to go on a fun outing. He'll think he's won.
I get it, but he may not deserve it, but he needs it. We tried to balance this so it didn't feel like a reward and wasn't a "blank slate" we're going to forget it ever happened. Plus, if we stayed home, or one parent stayed home, then the family couldn't go anywhere or do anything together, because one of the kids was in trouble (always!). 
Our solution? All the children were allowed to go on "family activities" (or we found something else for that child to do with a trusted adult if he or she couldn't handle the activity, because it was overwhelming or triggering). If the whole family was doing something together, like going to the park, or the movies, or out to eat... then the child could go. We wanted there to be obvious rewards to being part of our family.

Not Feeling Safe


Children NEED to feel safe to start to heal.   This feeling of safety is not about physical safety and often not based in reality – it is a perceived feeling of safety.



A child who feels unsafe is a scared child. A scared child will act out (or act in) to try to feel safe again.

Just like our kids keep using old defense mechanisms that are no longer needed, our kids with scary, traumatic early childhoods often get stuck in the feeling that they are not safe.


This is a life or death feeling! 


Feeling unsafe is not rational. You can't explain to the child that they're safe now. Logic doesn't work. Feelings of being unsafe can pop up at the most unexpected times, like a PTSD flashback.  


Generally this feeling of being unsafe will fade as our child heals, but there will probably always be times when it comes up again. For a good explanation of why kids with trauma issues don't feel safe see: The Frozen Lake Story (at the bottom of this post) by Nancy Thomas.

Children who don't feel safe in infancy have trouble regulating their moods and emotional responses as they grow older. By Kindergarten, many disorganized infants are either aggressive or spaced out and disengaged, and they go on to develop a range of psychiatric problems. They also show more physiological stress, as expressed in heart rate, heart rage variability, stress hormone responses, and lowered immune factors. Does this kind of biological dysregulation automatically reset to normal as a child matures or is moved to a safe environment? So far as we know, it does not.” ~ The Body Keeps the Score, Beseel A van der Kolk, M.D.
For a fantastic explanation of safety and why it is so important - plus what to do about it. I highly recommend the video Chaos to Healing - Therapeutic Parenting 101 which explains Daniel Hughes P.A.C.E concept in an easy to understand and practical way. One of the presenters on this video is therapeutic parent and coach, Christine Moers. If you haven't seen her YouTube videos or checked out her blog, I HIGHLY recommend her.

Kids of trauma are often easily triggered, extremely sensitive to emotions, unable to regulate their emotions... causing them to react as if they are in a warzone.  You can't learn, attach, and heal if you don't feel safe and you're living in a war zone! 


How We Handled Not Feeling Safe: 


Our kids need to feel safe and loved (Why Doesn't My Child Feel Safe?). That meant I couldn’t punish them by taking away all fun stuff (even though I wanted to!!!) A post on Consequences vs Privileges.


Our kids NEED Rules, Structure, Support, Routines and Boundaries to feel safe.



Additional Challenges


Attention Seeking? 

At first, my daughter's the nonsense questions and babbling about TV shows or the latest drama at school - things and people I know nothing and care nothing about, seemed like she was trying to keep all the focus on her and/or drive me crazy. I found myself starting to avoid her. Then I noticed a pattern. When she was feeling anxious and overwhelmed she started doing what my mom called "pressured speech." 

Great YouTube video by the awesome Christine Moers about why they do this - Nonsense Questions and Chatter)

When I realized this behavior was caused by anxiety, it made it easier to provide Calming Techniques and fight to make her world smaller and less overwhelming (by providing Structure and Caring Support). 




Empty Bucket
It makes me crazy that my kids can behave all day at school, and then come home and be  whiny, require my constant attention. demanding (especially to me), picking fights, picking on siblings, getting into arguments with everyone, refusing to do even the simplest chore or task... (For more information about why they act this way, check out the post - If You Find Out I'm Not Perfect, You'll Leave).


My Spoon Theory The original Spoon Theory is about a woman with Lupus explaining to a friend, that she gets a finite number of physical activities per day (represented by spoons) and that every task costs her one of her spoons. She often runs out of spoons before the end of the day. 

I believe that this happens with our children too. They work so hard behaving in front of other people, that when they get home, they have no emotional reserves (spoons) left. They trust us enough to let us see that they're not perfect (And yes, I often wish my kids didn't trust me this much! That's why I do a LOT of Self-Care.) 




Small Window of Tolerance/ Easily Overwhelmed
Overreacting to things you or I might consider minor. 

Window of tolerance is a term used to describe the zone of arousal in which a person is able to function most effectively. When people are within this zone, they are typically able to readily receive, process, and integrate information and otherwise respond to the demands of everyday life without much difficulty. This optimal window was first named as such by Dan Siegel.
During times of extreme stress, people often experience periods of either hyper- or hypo-arousal.
  • Hyper-arousal, otherwise known as the fight/flight response, is often characterized by hypervigilance, feelings of anxiety and/or panic, and racing thoughts.
  • Hypo-arousal, or a freeze response, may cause feelings of emotional numbness, emptiness, or paralysis.
People who have experienced a traumatic event may respond to stressors, even minor ones, with extreme hyper- or hypo-arousal. As a result of their experiences, they may come to believe the world is unsafe and may operate with a window of tolerance that has become more narrow or inflexible as a result. A narrowed window of tolerance may cause people to perceive danger more readily and react to real and imagined threats with either a fight/flight response or a freeze response.
A child who is Dysregulated and/or in fight/ flight/ freeze mode is “thinking” with the reptilian part of the brain (survival!).  In other words, they are not thinking at all.
Their behavior is a purely instinctual response to what the brain believes is a life or death situation.

How We Handled Dysregulation: 
Helping my dysregulated child feel safe and calm was the best way to help them return to their window of tolerance. (See posts - Dysregulation and Meltdowns; Why Doesn't My Child Feel Safe?Calming/ Relaxation Techniques, ). I found that Structure and Caring Support was the most helpful long-term in helping them widen their window of tolerance.  

Complex Post Traumatic Stress Disorder 
Be prepared for your child to blame you for their past (usually the mom gets the brunt of this). My daughter recently admitted to seeing one of her past abuser's face everywhere - on walls, and particularly - over my husband's face. She hates "him," rages at him, tells him he is mean and evil, accuses him of yelling at her (even though Hubby isn't even raising his voice), and she dissociates.When in a meltdown, Kitty mentally shuts down - we call it freeze. She acts instinctively to protect herself. It's difficult not to hold her accountable when she rages during these times, but we've learned to wait until she's calm and then process what led up to the event so we can help her prevent re-occurrences. There are times when she doesn't remember the event at all.

Kids in a PTSD flashback are overwhelmed and in fight/ flight or freeze. It’s difficult to learn math and spelling when you’re in the middle of a war zone! 


How We Handled PTSD: 

Get a good therapist who understands and has experience working with adopted/foster kids with trauma. We love our EMDR therapist for our daughter, but still use a good attachment therapist too. Don't be afraid to "fire" the therapist if it's not a good personality match.

EMDR therapy is the most recommended therapy for people with PTSD. It is most often used by soldiers and victims of trauma (like rape or being in a natural disaster), and usually only requires 2-3 sessions.  Obviously people who have suffered from long-term trauma (Complex PTSD), such as child abuse, would most likely require more sessions.  


There are no medications specifically for treating PTSD, but with good therapy and meds that help with the symptoms, the child can recognize the effects of the trauma, learn to cope, and move on to dealing with the cause of the trauma.




Holidays, Birthdays, School, and Other Traumaversaries

At our house, the acting out and meltdowns, were always worse around Holidays, Traumaversaries, Starting or Ending school Birthdays... When I wasn't so frustrated at them I could scream, I pulled them in. I reminded myself that they were terrified. This was life or death to them, and they couldn't really handle change or added stress (this has gotten better as they healed). Even my bio kids reacted this way, just not to this extreme. (Helpful post - Handling Meltdowns and Dysregulation)



Puberty

Puberty sucks. Those hormones rushing around adds a whole new layer of fun. The good news is that while ages 13 and 14 were horrible for my kids (biokids and adopted kids), things got better after that. More info in this post - The Teen Years



Co-Morbid Diagnoses

Children with trauma issues usually have more going on then just one issue - attachment disorders, physical and sexual abuse, PTSD, RAD bipolar disorder, ADHD, FAS/FAE... caseworkers will not or cannot tell you all of what caused these issues, and often symptoms overlap and appear to be other things. I don't think I've ever heard of a child with RAD that didn't also have PTSD. Here's a good chart for Overlapping Behavior Characteristics.




Some Things That Helped Us Handle Behavior Issues


Advocating for Yourself, Your Family, and Your Child - In That Order


My Top 10ish Things I Couldn't Do This Without


STRUCTURE AND CARING SUPPORT Helping your child feel safe by providing the structure they need/ crave. Most of all, I gave my kids a LOT of structure and support (Structure and Caring Support). Our kids need so much more than other kids, especially when they are overwhelmed and Dysregulated.

We went back to line of sight supervision, time ins instead of time outs, removed as many overwhelming events as possible (not just avoiding throngs of hyper children in places like sporting events and the park, but also the grocery store and Sunday School). Yes, there were things I could do little about (school/ daycare), but I could talk to the teachers and minimize as much stress as possible.

When stress was high, my kids’ life was like being in the FAIR Club (our family discipline method  ), but without actually being in the FAIR Club.

COCOONING
I tried to find calm, quiet, but still fun, things to do (Trapped in The House: Activities for Kids) so they wouldn't feel punished (taking a walk, letter parties … ). This wasn't about being in trouble or loss, they'd had enough of that; this was about making their life smaller. So they would feel SAFE.

SCHOOL
I worked with the school to try to find ways to reduce my child's stress there. (Anxiety Scale)

SIMPLIFY
At home, I did things like strip their room (Decluttering), because even with me helping them clean, it was overwhelming. So I did it when they weren't there, although I let them know ahead of time.  I left nothing but a bed, a book/ quiet toy, and a stuffed animal, at one point I even had my daughter's dresser in my room, and she "checked out" her clothing by bringing me the dirty ones, THIS WAS NOT A PUNISHMENT. I tried to find ways to help them understand that. I pointed out that now cleaning their room would be a lot easier! (Explaining Age-Appropriate Parenting to Your Child)
CALMING TECHNIQUES

Effective techniques for helping a child calm down or stay calm. I used Calming Techniques a LOT.

SELF-CARE!
A lot of time I screwed up. I lost my cool. I gave up.  Then I did a lot of Caring for the Caregiver because this is HARD WORK. I forgave myself, which was REALLY HARD. I put on my big girl panties, tried to Find the Joy, apologized to my child for not keeping them safe, and started over.
ATTACHMENT THERAPY and THERAPEUTIC PARENTING 

As the child heals and attaches to you, he/ she feels safer. Being a Therapeutic Parent SUCKS, but it does get better.

CRISIS PLANS

Setting up a plan with child's school, caregivers, treatment team... to determine ahead of time, what to do if the child starts feeling unsafe and acting out or acting in.

ANXIETY SCALE 

concrete method of determining how child is feeling.

CONSEQUENCE vs PRIVILEGES 

Thinking outside the box (letting the kids help)

DEVELOPMENTAL AGE APPROPRIATE LEVELS

concrete plan used to explain to treatment team why child is being given privileges and responsibilities more appropriate to a younger child (hint: because they are dysregulated and don't feel safe!)

THE FAIR CLUB - At first, we used the FAIR Club for discipline, but then we discovered that it could be used as a starting point for the structured lifestyle our kids with trauma issues needed.


BUILDING SECURE ATTACHMENT

Secure attachment requires the development of object permanence and constancy.

There are three basic steps to this process:

  1. Building SafetyYou cannot attach or love if you do not feel safe. Safety for kids of trauma comes from routines and security (which can be things like physical holds and alarms on the door, but also regular meal and bedtime routines). Parents MUST proved for basic needs (food, shelter, warmth) routinely and predictably, BUT feeling safe takes time. It took many years for them to feel unsafe and not trust, You can't expect them to trust just because you know they're safe now. It takes time to unlearn those defense mechanisms that once were necessary for survival.  {Why Doesn't My Child Feel Safe?}
  2. Falling in Love. Dopamine is the brain chemical that makes everything seem more fun and interesting. We cannot fall in love without positive fun and interaction.

    Think about this. You would not walk up to someone and say, "Hey, what's your name? Hi Larry, you're going to be my new husband. You will live in my house, take my last name, and do all the chores on this honey-do list. You are not allowed to talk about your other life. Your wife was mean and she does not love you like I do. You love me and I love you.... say it! Say you love me!" ---------------

    ---------- Of course you wouldn't do this! You get to know each other. You date. You have fun, conversations, and play together.
  3. Claiming and Belonging. This cannot come first! You need the other steps to come first. You also must honor the child's choice to be a member of the family or not and shift roles accordingly. 
Until a child is a member of the family they should receive "The Basic Package"Accommodation.
  • Provide a "structure and rehabilitation" environment (vs. "love and affection" environment). {Structure and Caring Support}
  • Meet the child's basic needs for food, shelter and warmth.
  • Provide affection in response to the child's demonstration of affection, but only if it's appropriate.
  • Draw attention to the "giving and taking" that is part of every interaction. {Reciprocity}
  • Give and allow consequences that will evoke caring behaviors. {Therapeutic Parentingand The FAIR Club}
Katharine suggests no chores or family expectations until your child is part of your family. Even the names "Mom" and "Dad" are nicknames that grow out of love and can wait until later to be used.

"The Luxury Package" Accommodation
Basic package plus "family perks"

  • All things that children don't need but come out of the goodness of a parent's heart (ex. extra-curricular activities, chauffeur services, vacations, parties, dinners out).
  • To qualify for this package a child has to mutually satisfy parental needs in some ways, most of the time.
Earning the Luxury Package
A child can "upgrade" by performing certain family-friendly behaviors.
How do you know whether or not your child has given enough to deserve an upgrade and is ready to be part of the family?

Close your eyes and picture a child. How do you feel when you look at this child? Do you feel happy and loving? Do you feel warmth?
Any time you wonder if your child is ready, close your eyes and picture your child. Does the thought of your child make you feel warm and happy. A joy to your heart as opposed to sadness, emptiness, rejection, or fear. {Positive Behaviors}

Until the child makes you feel this way he or she is not ready to be part of the family. It cannot be earned or forced. It is a feeling.

relationship is defined as a MUTUAL satisfaction of needs.
  • There is no mutual well-being if a parent is providing luxury accommodations and the child is not earning the perks.
  • The child will be momentarily happy (as long as the perks keep coming), but the parent will not.
  • The ramifications to your child's development and the parent-child relationship go much deeper than happiness.
So here's what happens:
  1. The parent receives little or no positive response from the child and often the child is neglectful of and abusive to the parent. Without either one's needs being met, and unable to "exit" the relationship, there can be little to no feelings of attachment (leaving resentment and apathy).
  2. The parent's natural frustrations, disappointments, feelings of being used up, resentments, and demands from the child... are viewed as weaknesses, even emotional disabilities (unresolved issues) that require therapeutic interventions. Therapists blame the parents for their bad feelings about the child or might switch to the more willing "client" ignoring the elephant in the room.... which causes a lack of faith in therapy for the parent.
  3. Everyone presumes that if the child's needs are met he or she will naturally begin to reciprocate. Loving the child and satisfying his or her needs is not enough. The child MUST be taught how to be in a relationship. Role modeling does not work with our children.

ADDITIONAL RESOURCES
 If You Find Out I'm Not Perfect You'll Leave 
Why Doesn't My Child Feel Safe?

CHRISTINE MOERS, therapeutic parent and coach. See her YouTube videos and check out her blogCHAOS TO HEALING - Therapeutic Parenting 101 video which explains Daniel Hughes P.A.C.E concept in an easy to understand and practical way.



THE FROZEN LAKE STORY by Nancy Thomas
 "In order to understand what an unattached child feels like, one must understand his perspective. Imagine that you are the young child who must cross a frozen lake in the autumn to reach your home. As you are walking across the lake alone, you fall suddenly and unexpectedly through the ice. Shocked and cold in the dark, you can't even cry for help. You struggle for your very life, you struggle to the surface. Locating the jagged opening, you drag yourself through the air and crawl back into the woods from where you started. You decide to live there and never, never to return onto the ice. As weeks go by you see others on the ice skating and crossing the ice. If you go onto it, you will die."
"Your family across the pond hears the sad news that the temperature will drop to sub-zero this night. So a brave and caring family member (that is you, the parent!) searches and finds you to bring you home to love and warmth. The family member attempts to help you cross the ice by supporting and encouraging, pulling and prodding. You, believing you will die, fight for your life by kicking, screaming, punching and yelling (even obscenities) to get the other person away from you. Every effort is spent in attempting to disengage from this family member. The family member fights for your life, knowing you must have the love and warmth of home for your very survival. They take the blows you dish out and continue to pull you across the ice to home, knowing it's your only chance."
"The ice represents the strength of the bond and your ability to trust. It was damaged by the break in your connection to someone you trusted. Some children have numerous bonding breaks throughout their young lives. This is like crashing them into the ice water each time they are moved, scarring and chilling their hearts against ever loving and bonding again." 

Tuesday, October 3, 2017

Fetal Alcohol Spectrum Disorders (FASD)

Behavioral: Acting Younger than Chronological Age
Fetal Alcohol Spectrum Disorders (FASD)

Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term describing the range of effects that can occur in an individual who is prenatally exposed to alcohol. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term FASD is not intended for use as a clinical diagnosis.


Diagnoses under the FASD umbrella include:

  • Fetal Alcohol Syndrome (FAS)
  • Partial Fetal Alcohol Syndrome (pFAS)
  • Alcohol-Related Neurodevelopmental Disorder (ARND)
  • Alcohol-Related Birth Defects (ARBD)
  • Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure (ND-PAE)Source: National Organization on Fetal Alcohol Syndrome FASD Terminology Summit, 2004 

Medical issues you might see in a person with FASD:

  • Eye/vision and ear/hearing involvement
  • Palatal concerns
  • Growth concerns
  • Immune system concerns
  • Spinal concerns
  • Cardiac/renal abnormalities
  • Sleep problems

Common misconceptions that many people believe about FASD.

  • The child will show physical features linked to FASD (specific damage depends on what part of the brain is developing when the pregnant mother is drinking)
  • FASD means the child is mentally retarded.
  • Behavioral problems associated with FASD are all due to poor parenting and a bad living environment.
  • Children will just “grow out of it”
  • Mothers had an easy choice not to drink during pregnancy and were just careless. Source: Emory University, Georgia Department of Behavioral Health and Developmental Disabilities (2011)

"Alcohol crosses the placenta. the fetus does not have the ability to metabolize it. It 'pickles' the brain and it causes brain damage. Even with all the drugs that our birth mother did, it was the alcohol that left the legacy that Ellie has."
Saving Ellie: Adoptive Parents Give Up Ill Daughter with FASD

Fetal Alcohol Syndrome (FAS)

Defined and named in 1973, Fetal Alcohol Syndrome (FAS) is a disorder resulting from prenatal  exposure to alcohol. Confirmed maternal use of alcohol might or might not be documented.

The diagnosis of FAS follows a specific outline. Individuals with FAS are generally found to have:


  1. Growth problems (e.g. unusually low birth weight and size, before and after birth)
  2.  Facial dysmorphia (e.g. small head, small eyes, underdevelopment of the upper lip, indistinct groove between lip and nose, flattened cheekbones)
  3. CNS abnormality (e.g. delayed brain development, intellectual impairment)

It is important to note that these criteria are for FAS and not Fetal Alcohol Spectrum Disorders (FASD). FASD is an umbrella term that refers to the range of effects, including FAS, that can result from prenatal alcohol exposure. FASD is not a diagnostic term.
Sources: CDC’s Fetal Alcohol Syndrome: Guidelines for Referral and Diagnosis (2004)
“Fetal Alcohol Spectrum Disorders: From Research to Policy” Alcohol Research and Health (2010)


Individuals exposed to alcohol prenatally who do not have identifiable deficits in all three domains required for an FAS diagnosis might be diagnosed with one of the other conditions under the Fetal Alcohol Spectrum Disorders continuum, such as Partial Fetal Alcohol Syndrome, Alcohol Related Neurodevelopmental Disorder or Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure. Source: FASD Competency-Based Curriculum Development Guide (2008)


Alcohol-Related Neurodevelopmental Disorder (ARND)

ARND is a condition under the Fetal Alcohol Spectrum Disorders (FASD) umbrella. ARND refers to a complex range of disabilities in neurodevelopment and behavior, adaptive skills, and self-regulation in the presence of confirmed prenatal alcohol exposure. 

Specifically, individuals with ARND do not have the FAS facial abnormalities, but may have developmental disabilities including structural and/or functional central nervous system dysfunction (brain damage) with behavioral and learning problems. Source: Recognizing ARND in Primary Health Care of Children Consensus Statement, Interagency Coordinating Committee on FASD, 2011



Alcohol-Related Birth Defects (ARBD)
Alcohol-Related Birth Defects (ARBD) describes the physical defects linked to prenatal alcohol exposure, including heart, skeletal, kidney, gastro-intestinal, ear, and eye malformations in the absence of apparent neurobehavioral or brain disorders. Source: FASD Competency-Based Curriculum Development Guide (2008)


Mayo Clinic's Recommended Treatment for Behavioral Problems)
As a parent of a child with fetal alcohol syndrome, you may find the following suggestions helpful in dealing with behavioral problems associated with the syndrome. Learning these skills (sometimes called parent training) can include:
  • Recognizing your child's strengths and limitations
  • Implementing daily routines
  • Creating and enforcing simple rules and limits
  • Keeping things simple by using concrete, specific language
  • Using repetition to reinforce learning
  • Pointing out and using rewards to reinforce acceptable behavior
  • Teaching skills for daily living and social interactions
  • Guarding against your child being taken advantage of by others because many children with fetal alcohol syndrome are at risk of this
  • Early intervention and a stable, nurturing home are important factors in protecting children with fetal alcohol syndrome from some of the secondary disabilities they're at risk of later in life.


Discipline Problems vs Behavior Problems


Discipline problems (noncompliance, misbehavior) occur when the caregivers have not structured the child's environment for success, or when parents are inconsistent (expectations or consequences), non-responsive, or inaccessible. When adults adjust their behaviors and attitudes, often children with discipline problems can be brought under control in as few as 3 to 7 days. This is the premise behind the show World's Strictest Parents.


Behavior problems on the other hand lie within the child. These are persistent behaviors that do not disappear even with the best parenting (although good parenting can help to control the behaviors). These can include impulsivity, inattentiveness, and other behaviors like ADHD, FAD and immature behaviors associated with missing capacities in object relations.





YOU CANNOT EXPECT PUNISHMENT OR DISCIPLINE TO "FIX" BEHAVIOR PROBLEMS!



Having behavior problems is like being born with poor eyesight. No amount of punishing or controlling is going to fix this problem. Glasses might help. However, the parent will be responsible for taking the child for regular eye check-ups, teaching him how to care for his glasses, and restricting activities where glasses might break. The goal is that by the time the child is 18, he will be ready and able to take full responsibility for the care of his own eyes and glasses.


How Do You Tell the Difference?

So how do you know if your child has a discipline problem or a behavior problem? The best way is to change the home environment. If the behavior stops or improves it is most likely a discipline problem. It it remains unchanged but more in control, and the parent is acting consistently, it is likely a behavior problem.

from Therapeutic Parenting: Chapter 2 Discipline vs Behavior Problems



HOW WE HANDLED IT:


I'm not actually sure if my children have an FASD. I do know that they both have permanent brain damage and the resulting behaviors and issues are similar if not the same. 


We did 3  things:

  1. Changed Our Expectations. 

    Really changed them. Redefined success for my children.  We lowered our expectations to what they could actually handle, not what their neurotypical peers could do or what their teachers and other professionals thought they "should" be able to do.. See this Level Chart post for some examples. 

    Changing my expectations also helped ME immensely (Finding the Joy).  I'm less frustrated by their inability to do things that would be "normal" for a teen.  I do have to constantly remind myself "She's only 6!  She's only 6!  She's only 6!"

  2. Parented with LOTS of Structure and Caring Support.

    It took me a long time to believe it, but my children actually 
    craved caring structure. 

    When I began providing Caring Structure, I thought for sure they would rebel and make our lives miserable. They didn't always like it, but it seemed like their few complaints were based on what their peers thought about it, rather than something they were truly feeling. Unlike my neurotypical, biochildren who understandably would have protested the strict structure their adopted siblings required, most of the time, my adopted children just accepted it and moved on.


    Without this structure or when we "lightened up," my son would act out until he had to be returned to the stricter structure level. Somewhere deep down, subconsciously, his brain knew he needed that structure to feel Safe.

    My kids were easily overwhelmed and had a small window of tolerance. They were easily frustrated and were often dysregulated. We had to simplify their lives a LOT to
     lessen the feeling of “overwhelm.”  
    We did this by making their world smaller. 
    This was often like childproofing – avoiding and removing things and events that can be triggers.

    See this post for how we did this - Structure and Caring SupportAnd this post for dealing with Dysregulation and Meltdowns.
  3.  Switched to Therapeutic Parenting

    Found my children's developmental/ emotional age and began therapeutically parenting them based on that age - Therapeutic Parenting Based on Emotional Developmental Age.






Guest blog: Our Story
We adopted T. at age two from a Russian orphanage. Minimal information was given on her life before age two.  There was a cute video of her interacting with a caregiver, and that was it, we loved her!  We knew that she had some kind of sad past, probable neglect, and we were willing to do "attachment therapy", or whatever it would take to overcome her delays.  We, meaning my husband and I, already had a bio daughter who was eight at the time and lovely, so we thought of ourselves as great and experienced parents.  
T. was evaluated in Russia as having normal intelligence and "usual orphanage delays" so we were confident we could help her overcome her past.  
From the beginning there were difficulties but we were ready!  So we thought.  T. could barely walk, very unsteady on her feet yet she would NOT hold our hand, she would rather fall it seemed.  We had to force our hand holding for safely.  Trying to bond was difficult, I would rock her with a bottle, trying to make eye contact, as was recommended by the social worker.  
In retrospect, I think we overwhelmed her with attention, sensory overload, etc.....It was a hate/love relationship from the beginning, she would push me away, but then if I left, she would cry for me.  All very confusing, and we were in constant contact with the social worker.  The social worker said it would take approximately two years for us to become a "family", to make up for the two years she had no one.
So, we waited patiently until she was four.  T. seemed quite smart, could dress herself, learned to read even. But stubborn!!!!!  Loving arguments, wanting her own way ALL THE TIME.  We fought her, becoming more strict, determined not to let her be the boss of us, which seemed her constant goal.
School was a nightmare, she hated it, hated the other kids, hated being told what to do...
Many doctor appointments were going on through these early years since T. had Tuberculosis and other infectious things happening.  At every appointment I would mention her behaviour but it was never too bad at the doctor appointments, she did her charm routines and fooled everyone.  She was learning ok at school and labelled as "a bit hyper".  
The summer after grade two was a game changer.  I was determined to do a little school work each day with T., and this is when I realized she could not remember much of what she'd done in grade two.  Red flags were popping up more and more, regarding her learning and behaviour.  On the internet, we found an adoption clinic near us and made an appointment.  
It was there that Tanya was diagnosed with Alcohol Related Neurological Disorder at age 8, based on her smaller head circumference, and behaviour issues.  The 4-digit diagnostic code was used for FASD diagnosis, photos and measurements were done.  Attachment disorder was also diagnosed.
That same summer I had stumbled upon the book "Damaged Angels" by Bonnie Buxton, which is the true story of Bonnie finding out about her daughter's FASD.  So we were somewhat ready for the diagnosis. It gave an explanation for what was going on.
We were able to get T. into a multiple exceptionality class at school, after her diagnosis and some psycho-educational testing. Fast forward to the present.  With all the help and encouragement T. has received over the years, she has still not been successful in getting her highschool diploma, or a job.
We did keep a binder of all medical and school reports through the years so she has been able to qualify for the Ontario Disability Support Program. [How Do You Keep Your School Stuff Organized?]
What will the future hold, so unknown? 
T. wants all the things she sees her older sister having, a boyfriend, friends, a job, etc.  But she's very unrealistic about her goals, doesn't take the first step to make a goal happen, wants to be "in charge" of people for a job but refuses to wipe tables, or take any kind of beginner job. She refuses to take advice from people who are smarter than she is, very frustrating.
We manage her day to day, letting a lot of our rules go by the wayside for the sake of peace and harmony in our home.  For example, she eats whatever, whenever, and not usually with us. We "bond" by watching a tv show together, her request.  She wants to "bond" on her terms but I have to get my way too.  Our bonding tv time is between 9-10 am so she will be UP out of bed.  Some kind of routine is necessary so she will be awake during the day, sleeping at night.  At least.
We do try to say YES as much as possible, but will get her to do a chore BEFORE the yes, because promised chore will never happen if she gets the YES first.  Such is the way of her attachment difficulties, she does not help me out of LOVE but only to get a YES about something she wants.  
I refuse to argue with her and I have changed my mindset to not stress about things.  
Somehow, through the years, acceptance has settled in and a realization that no matter WHAT we do, the FASD and attachment issues will NEVER go away.  LIfe goes on.