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!

Tuesday, October 3, 2017

Fetal Alcohol Spectrum Disorders (FASD)


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.



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.

"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)




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.

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