I think this is a simple way to explain FASD to others.
Fetal Alcohol Spectrum Disorder Explained:
Most of us are familiar with the facial features of FAS (Fetal Alcohol Syndrome). But 90% of cases found on the fetal alcohol spectrum actually don't have the facial features.
WHY? Because the only way to get the facial features is for the mother to drink alcohol on Day 19, 20, & 21 of her pregnancy. BUT the unborn baby's brain develops the entire 9 months of pregnancy.
Here's a simple explaination:
FAS: All of the face...ALL of the brain damage.
pFAS: Some of the face...ALL of the brain damage.
ARND: None of the face...ALL of the brain damage.
My son has ARND (Alcohol Related Neurodevelopmental Disorder). It is an INVISBILE disabilty, which often makes it difficult for others to understand.
Tuesday, June 16, 2015
Tuesday, November 11, 2014
Swiss Cheese and Scars
Once a neuropsyschologist told us that our daughter's brain was like Swiss cheese. Yep, she actually compared my daughters brain to stinky cheese (I didn't mind because I very much enjoy swiss cheese). Then she explained that some parts are in perfect working order and other parts have the holes but there isn't a scan that shows the holes so it's hard to know where the deficits are. It's almost like a treasure hunt searching for the holes (although a sick twisted one with no map or jewels). When we discover a hole it's actually a relief because now we know what we are dealing with. It's like turning on the light in a dark room, it's not scary when you see it in the light.
One black hole that we have identified for sure is that Isabella has a severe auditory processing disorder. This past summer our family took a rode trip to Newport and listened to several of the Harry Potter books on CD. When we got home Isabella asked if she could watch the movies. We decided that we would do it as a family even though we had all seen the movies before and read most of the books. Together we watched all eight movies ( yes eight, remember the last one is divided into two parts). I was impressed that Isabella was intently watching each movie. I thought to myself, "Wow! She is actually paying attention and getting this." Until, UNTIL, on the 8th DVD half way through the movie she blurts out, "Waaaaaait a minute! Harry Potter has a scar on his forehead. Do you guys see that scar? Why does Harry Potter have a scar?" We all sat there speechless. Awestruck. THIS WAS THE 8TH MOVIE PEOPLE! How had she missed one of the most important points of the entire movie? MovieS. EIGHT of them. How? I have no answer for this question except- Swiss cheese. She seems to be listening, she looks like she's comprehending, she appears to be studious and thoughtful and yet the information is not being processed; it has fallen into a hole before she even knew it.
One black hole that we have identified for sure is that Isabella has a severe auditory processing disorder. This past summer our family took a rode trip to Newport and listened to several of the Harry Potter books on CD. When we got home Isabella asked if she could watch the movies. We decided that we would do it as a family even though we had all seen the movies before and read most of the books. Together we watched all eight movies ( yes eight, remember the last one is divided into two parts). I was impressed that Isabella was intently watching each movie. I thought to myself, "Wow! She is actually paying attention and getting this." Until, UNTIL, on the 8th DVD half way through the movie she blurts out, "Waaaaaait a minute! Harry Potter has a scar on his forehead. Do you guys see that scar? Why does Harry Potter have a scar?" We all sat there speechless. Awestruck. THIS WAS THE 8TH MOVIE PEOPLE! How had she missed one of the most important points of the entire movie? MovieS. EIGHT of them. How? I have no answer for this question except- Swiss cheese. She seems to be listening, she looks like she's comprehending, she appears to be studious and thoughtful and yet the information is not being processed; it has fallen into a hole before she even knew it.
Wednesday, September 17, 2014
You smell like Texas!
I recently returned from a trip to Texas. And my son, Sam, (diagnosed with A.R.N.D.) has been smelling me several times since I've returned. He told me that I smell like Texas. So I asked what does Texas smell like, and he said: "Yummy!"
It's amazing to think about how different his sensory input is. One of the effects from his fetal alcohol exposure is that his sensory input is so much more enhanced: smelling, hearing, seeing, touching. I don't think I can truly comprehend what that's like and how hard that is for him at times. Our sensory input effects us in so many ways.
I had an experience when I was driving a car with a broken radio. One day the radio randomly turned on and my son and I were excited, enjoying listening to the music, even turned the sound up a bit. But the next day when I got into the car, the radio was stuck, turned up loud. I could not adjust the volume or change the station or turn it off. It remained like this for several days and I really started to go crazy. I hated the sound of the radio that I couldn't turn down, off, or change the station! At times, it was hard for me to think and hard to focus on anything. It was such a frustrating feeling! I finally had my husband remove the radio and it was such a relief to have that constant input of sound gone.
I wonder how many sounds and other senses around us are to my son, like the radio was to me. I hope I can be more understanding and accommodating to my son's sensory input.
One thing we have done is that we have started eating off of plastic plates with plastic utensils at dinner time. The sound of a metal fork clicking against a glass plate is so frustrating for my son to have to hear repeatedly as he eats--that sound must be so much more enhanced to him. So we made that accommodation. I only wish I had realized sooner. I know there are also sound blocking ear phones that are used to accommodate sensory input of sounds. I feel that I take for granted my brain's ability to appropriately input my sensory intake and I'm hoping to be more aware of my son and do what I can to make accommodations to help him.
I wonder how long I will "smell' like Texas :)
It's amazing to think about how different his sensory input is. One of the effects from his fetal alcohol exposure is that his sensory input is so much more enhanced: smelling, hearing, seeing, touching. I don't think I can truly comprehend what that's like and how hard that is for him at times. Our sensory input effects us in so many ways.
I had an experience when I was driving a car with a broken radio. One day the radio randomly turned on and my son and I were excited, enjoying listening to the music, even turned the sound up a bit. But the next day when I got into the car, the radio was stuck, turned up loud. I could not adjust the volume or change the station or turn it off. It remained like this for several days and I really started to go crazy. I hated the sound of the radio that I couldn't turn down, off, or change the station! At times, it was hard for me to think and hard to focus on anything. It was such a frustrating feeling! I finally had my husband remove the radio and it was such a relief to have that constant input of sound gone.
I wonder how many sounds and other senses around us are to my son, like the radio was to me. I hope I can be more understanding and accommodating to my son's sensory input.
One thing we have done is that we have started eating off of plastic plates with plastic utensils at dinner time. The sound of a metal fork clicking against a glass plate is so frustrating for my son to have to hear repeatedly as he eats--that sound must be so much more enhanced to him. So we made that accommodation. I only wish I had realized sooner. I know there are also sound blocking ear phones that are used to accommodate sensory input of sounds. I feel that I take for granted my brain's ability to appropriately input my sensory intake and I'm hoping to be more aware of my son and do what I can to make accommodations to help him.
I wonder how long I will "smell' like Texas :)
Monday, September 8, 2014
FASD AWARENESS: THE EFFECTS OF ALCOHOL ON AN UNBORN BABY (Article by Aleena and Randy, parents of an adopted son born with alcohol caused birth defects)
This article is in honor of my Son and the life he will never have. No, my Son is not
dead, he is but 1 of an estimated 45,000 infants born each year, in the U.S. alone, with alcohol
caused birth defects.
September 9, is Fetal Alcohol Awareness Day. The ninth day of the ninth month was
chosen to represent the nine months of pregnancy, and the time during which a pregnant woman
must avoid consuming alcohol.
The names given to the variety of birth defects caused by the mother’s use of alcohol use
during pregnancy include Fetal Alcohol Syndrome Disorder (FASD), Fetal Alcohol Symptoms
(FAS), Fetal Alcohol Exposure (FAE), and most recently, Alcohol Related Neurological
Disorder (ARND). Simply put, it all refers to damage, usually to the child’s brain, caused by the
mother’s use of alcohol. Many times the damage is caused before the woman even knows she is
pregnant!
Alcohol affects more newborns every year than Down syndrome, cystic fibrosis, spina
bifida and Sudden Infant Death Syndrome combined. When a pregnant woman drinks alcohol, it
passes through the placenta and is absorbed by the unborn baby. Alcohol impaired children often
look normal, and tend to go unnoticed by the schools.
Children with FASD/FAS/FAE/ARND typically have multiple handicaps. Birth defects
caused by alcohol include mental retardation, facial changes, brain damage, learning and
behavioral problems, stunted growth, low birth weight, heart defects, fetal death, and increased
risk for abuse of substances; the list goes on and on. Some may have normal IQ's, but very poor
behavior, subtle and multiple learning disabilities, weaknesses in attention, memory, judgment,
and difficulties primarily in verbal reasoning/auditory processing. Many times such children and adults are mis-diagnosed with ADD, ADHD and other similar problems. Such children will often
require lifelong special medical, educational, familial and community assistance to maximize
their potential.
Alcohol, a solvent, raises havoc on the unborn child’s brain. The tragedy is that alcohol is
not only the number one cause of mental retardation in the United States, but that it is completely
preventable!!
There is no known safe amount of alcohol use during pregnancy and no known time when
drinking alcohol is safe. Alcohol can do more damage to the developing embryo and fetus than
illegal drugs - even heroin and methamphetamine!
Our story:
Many of you in our beloved, little community know our son Zack, and have worked with
him in one way or another over the past 14 years. You have seen the loveable, kind hearted boy
and some of you have seen him when his behavior turns into a violent rage. You have seen a
darling boy grow into a handsome young man, who on the outside appears perfectly normal, but
in actuality, has the reading skills of a first grader, can’t make change for a dollar, and has little
to no concept of money or time. No amount of extra time put in by educators, aids, counselors,
therapists, or “medications” can cure the brain damage caused by alcohol.
When Zack was a little boy, he used to say to us, “When I grow up, I want to have a job
where I help people.” That is our Zack. Yet at 18, his developmental age is equivalent to that of
a seven year old, and even with a job coach, he is currently unable to have a job. In writing this
article we want to help Zack fulfill his dream of helping people.
When Zack was very young, he had some of the typical facial features of children born to
mothers who use alcohol, but as the child ages, the facial features are not so obvious, leaving him
a handsome and very social young man. Alcohol impairment is usually an unseen birth defect.While the brain has been irreversibly damaged, on the outside the child or adult may look
perfectly normal. Since the person looks so normal, it is expected they will act normal and sadly,
this is impossible for them.
Just one year ago, when he was barely seventeen, Zack’s behaviors had become so
unpredictable and often dangerous that, based upon the recommendation of his doctors at the
University of Utah Hospital, and for the safety of others at our home, we made the heartbreaking
decision to have Zack live in a structured group home and attend a small school especially for
children with severe behaviors. When we had to do that, we knew that we wanted to do
something to make Zack’s life count for something special. Aside from continuing to love and
support our son, we want to help raise awareness about consuming alcohol during pregnancy
When Police Officers are called and have to deal with Zack, they see a seemingly normal
teenage boy who has lost control and caused property damage, physical harm, or threatened
others. As a result, Zack has seen the inside of the Judicial System since leaving the Heber
Valley and the officers here who knew of his situation. Zack happens to be adopted but if his
biological mother and the world in general were more aware of what affects, even casual
drinking, can have on an unborn baby, Zack’s life might be very different today.
Zack knows the rules, he wants to follow the rules, and he can even teach the rules, but
can’t follow the rules. Alcohol affects/disables, the executive function (impulse control, cause
and affect thinking) of the brain. Because his birth mother made the choice to drink while she
was pregnant, Zack will never be able to have a normal life, participate in high school athletics,
drive a car, attend the prom with a date, graduate from high school, or any of the other “normal”
stepping stones of becoming an adult.
Through our years of living with and raising two children affected by alcohol,
researching, reading, and now as a member of the Utah Fetal Alcohol Coalition, we have learned much about the consumption of alcohol and its affect on a growing fetus. We can be Zack’s
voice in helping people. We can help him fulfill his wish by sharing what we have learned about
alcohol use during pregnancy.
All drinks with alcohol can (and most likely will) harm an unborn baby. Unfortunately,
some doctors still say that a glass of wine at the end of the day is fine for a pregnant woman, but
even though the mother may barely feel the effects, the fetus will be deluged in alcohol and may
never fully recover from that single drink! To put it simply, women should not drink alcohol if
they are planning a pregnancy, not avoiding pregnancy, at any time during pregnancy, or while
breast feeding. If you are pregnant or planning to get pregnant, no alcohol is the ONLY choice.
If you drank before you realized the dangers, stop NOW and see your doctor.
For more information contact the Utah Fetal Alcohol Coalition www.utahfetalalcohol.org
Over 14 years ago Aleena & Randy adopted 2 children permanently disabled as a
result of their birth mother’s consumption of alcohol. While they are still learning
how to help their children maximize their potential, they hope their story can help
others avoid the heart breaking results of alcohol use during pregnancy. They can be reached at faskids@gmail.com.
dead, he is but 1 of an estimated 45,000 infants born each year, in the U.S. alone, with alcohol
caused birth defects.
September 9, is Fetal Alcohol Awareness Day. The ninth day of the ninth month was
chosen to represent the nine months of pregnancy, and the time during which a pregnant woman
must avoid consuming alcohol.
The names given to the variety of birth defects caused by the mother’s use of alcohol use
during pregnancy include Fetal Alcohol Syndrome Disorder (FASD), Fetal Alcohol Symptoms
(FAS), Fetal Alcohol Exposure (FAE), and most recently, Alcohol Related Neurological
Disorder (ARND). Simply put, it all refers to damage, usually to the child’s brain, caused by the
mother’s use of alcohol. Many times the damage is caused before the woman even knows she is
pregnant!
Alcohol affects more newborns every year than Down syndrome, cystic fibrosis, spina
bifida and Sudden Infant Death Syndrome combined. When a pregnant woman drinks alcohol, it
passes through the placenta and is absorbed by the unborn baby. Alcohol impaired children often
look normal, and tend to go unnoticed by the schools.
Children with FASD/FAS/FAE/ARND typically have multiple handicaps. Birth defects
caused by alcohol include mental retardation, facial changes, brain damage, learning and
behavioral problems, stunted growth, low birth weight, heart defects, fetal death, and increased
risk for abuse of substances; the list goes on and on. Some may have normal IQ's, but very poor
behavior, subtle and multiple learning disabilities, weaknesses in attention, memory, judgment,
and difficulties primarily in verbal reasoning/auditory processing. Many times such children and adults are mis-diagnosed with ADD, ADHD and other similar problems. Such children will often
require lifelong special medical, educational, familial and community assistance to maximize
their potential.
Alcohol, a solvent, raises havoc on the unborn child’s brain. The tragedy is that alcohol is
not only the number one cause of mental retardation in the United States, but that it is completely
preventable!!
There is no known safe amount of alcohol use during pregnancy and no known time when
drinking alcohol is safe. Alcohol can do more damage to the developing embryo and fetus than
illegal drugs - even heroin and methamphetamine!
Our story:
Many of you in our beloved, little community know our son Zack, and have worked with
him in one way or another over the past 14 years. You have seen the loveable, kind hearted boy
and some of you have seen him when his behavior turns into a violent rage. You have seen a
darling boy grow into a handsome young man, who on the outside appears perfectly normal, but
in actuality, has the reading skills of a first grader, can’t make change for a dollar, and has little
to no concept of money or time. No amount of extra time put in by educators, aids, counselors,
therapists, or “medications” can cure the brain damage caused by alcohol.
When Zack was a little boy, he used to say to us, “When I grow up, I want to have a job
where I help people.” That is our Zack. Yet at 18, his developmental age is equivalent to that of
a seven year old, and even with a job coach, he is currently unable to have a job. In writing this
article we want to help Zack fulfill his dream of helping people.
When Zack was very young, he had some of the typical facial features of children born to
mothers who use alcohol, but as the child ages, the facial features are not so obvious, leaving him
a handsome and very social young man. Alcohol impairment is usually an unseen birth defect.While the brain has been irreversibly damaged, on the outside the child or adult may look
perfectly normal. Since the person looks so normal, it is expected they will act normal and sadly,
this is impossible for them.
Just one year ago, when he was barely seventeen, Zack’s behaviors had become so
unpredictable and often dangerous that, based upon the recommendation of his doctors at the
University of Utah Hospital, and for the safety of others at our home, we made the heartbreaking
decision to have Zack live in a structured group home and attend a small school especially for
children with severe behaviors. When we had to do that, we knew that we wanted to do
something to make Zack’s life count for something special. Aside from continuing to love and
support our son, we want to help raise awareness about consuming alcohol during pregnancy
When Police Officers are called and have to deal with Zack, they see a seemingly normal
teenage boy who has lost control and caused property damage, physical harm, or threatened
others. As a result, Zack has seen the inside of the Judicial System since leaving the Heber
Valley and the officers here who knew of his situation. Zack happens to be adopted but if his
biological mother and the world in general were more aware of what affects, even casual
drinking, can have on an unborn baby, Zack’s life might be very different today.
Zack knows the rules, he wants to follow the rules, and he can even teach the rules, but
can’t follow the rules. Alcohol affects/disables, the executive function (impulse control, cause
and affect thinking) of the brain. Because his birth mother made the choice to drink while she
was pregnant, Zack will never be able to have a normal life, participate in high school athletics,
drive a car, attend the prom with a date, graduate from high school, or any of the other “normal”
stepping stones of becoming an adult.
Through our years of living with and raising two children affected by alcohol,
researching, reading, and now as a member of the Utah Fetal Alcohol Coalition, we have learned much about the consumption of alcohol and its affect on a growing fetus. We can be Zack’s
voice in helping people. We can help him fulfill his wish by sharing what we have learned about
alcohol use during pregnancy.
All drinks with alcohol can (and most likely will) harm an unborn baby. Unfortunately,
some doctors still say that a glass of wine at the end of the day is fine for a pregnant woman, but
even though the mother may barely feel the effects, the fetus will be deluged in alcohol and may
never fully recover from that single drink! To put it simply, women should not drink alcohol if
they are planning a pregnancy, not avoiding pregnancy, at any time during pregnancy, or while
breast feeding. If you are pregnant or planning to get pregnant, no alcohol is the ONLY choice.
If you drank before you realized the dangers, stop NOW and see your doctor.
For more information contact the Utah Fetal Alcohol Coalition www.utahfetalalcohol.org
Over 14 years ago Aleena & Randy adopted 2 children permanently disabled as a
result of their birth mother’s consumption of alcohol. While they are still learning
how to help their children maximize their potential, they hope their story can help
others avoid the heart breaking results of alcohol use during pregnancy. They can be reached at faskids@gmail.com.
Monday, July 21, 2014
Birthday Gifts
My daughter had a birthday yesterday. We have loved, struggled, triumphed, heart-ached, laughed and cried through 14 wonderful years. Isabella is a gift! She was adopted- we always like to say "was" adopted not "is" because it was just a one time event. Something that happened on certain day 14 years ago and not part of who she is- it is not her identity and neither is FASD. FASD is just something that happened to her that has made her brain work differently. It isn't who she is. She lives with the consequences of FASD just like she lives with the consequences of being adopted or being a second child- but it isn't WHO she is. She is an amazing, valiant, courageous, child of God who I believe is here to teach me. She bends me further than I thought I could bend. I have learned I am stronger and have more endurance and patience than I ever believed. That is a gift! She is my mirror, she holds it up for me to see all of the ugly, untamed, unpolished, and hidden parts of my character that I need to notice and refine. That is a gift! She forces me to think about things in a different way and to live more consciously. Because her brain works differently I have to pay attention to how my brain works, how and what I think. There is no yesterday or tomorrow with Isabella, when I'm with her I'm in the moment (I usually call this impulsiveness but "living in the moment" sounds so much better ). That is a gift! She makes me question things I have never questioned, she draws attention to things I have never noticed. These are all gifts! Fourteen years of painful, wonderful, soul-stretching gifts!
Tuesday, July 8, 2014
Am I crazy?
One thing about living with a child with an FASD is that I often feel like I might be going a little crazy. I think I'm a fairly sane, realistic person grounded in reality but when you are trying to get information from a child with an FASD it can rock your formally grounded, sane world. It also makes you doubt your own senses, not in the normal funny way but really doubt them.
Today my daughter Isabella was peeling a large cucumber, I was going to use said cucumber for dinner so I asked her if she had peeled the entire cucumber. No threat, just a question. She said "no" but in the 14 years I have known this girl I have learned a few things and one is don't believe a word she says. Not that she is really lying but she bends and twists the facts into an unrecognizable ball of stuff that can only make sense to her. I think it's called confabulation but it should be call confuse-you-lation because that's what it is- confusing! It leaves me scratching my head and saying out loud, "huh"?
The cucumber was no different. I asked her to show me the cucumber and when she held it up, the entire thing was peeled, the entire thing all the way to the stem. I said, I thought you didn't peel it all. Now this is the mind blowing part, she said:" I DIDN'T ". Yet, I am looking at an entirely peeled English cucumber with my own two blue 20/20 eyes. I almost wondered if I was going blind or really was losing it a little because she said it with such confidence while simultaneously displaying the evidence. It made me doubt myself, but just for a second (I'm no rookie).
This is such a small thing, it's only a cucumber, but it illustrates a bigger point that these kids can really push you to your mental breaking point. I know I have 14 years of experience under my belt but I'm still surprised that I'm surprised by these types of behaviors. We have dealt with lying, skipping school, stealing school supplies from teachers, stealing money from siblings, stealing candy at home, stealing candy at school, stealing candy at friends houses, stealing candy from little children (you get it) and lots of other stuff in just the past 2 months yet, and yet, I AM STILL SURPRISED!!! That is what's crazy.
Isabella is the most charming, darling, helpful, pure, good through-and-through child. This type of bold-faced lying stuff is not her and it's not her fault, she just says whatever pops into her head. She doesn't have the benefit of an executive filter like we do or that ever-so-important cause and effect reasoning. And since she is usually trying to dodge trouble or stay afloat she just says the thing that she thinks will have the best outcome for her. It's a crap shoot for her, not a matter of what is true and what isn't.
I'm not sure she actually knows what the truth is sometimes. Like when she told me a story yesterday about a girl (we'll call her Em). Em was Isabella's Jr. high friend for a short time but is now mean to her because according to Isabella, Em had to move to a new home and neighborhood so it has made her bitter and mean. I thought, hmmmm, that is what Isabella really believes. That's how she is making sense of this mean girl. When I offered some other reasons that Em might be mean to her (such as she didn't like Isabella lying to her ) she was surprised and perplexed. The truth of why Em is mean to Isabella makes no sense to her. Funny! Ironic even! I am surprised and confused by the "lies" that Isabella tells and she is surprised and confused by the truth!
Today my daughter Isabella was peeling a large cucumber, I was going to use said cucumber for dinner so I asked her if she had peeled the entire cucumber. No threat, just a question. She said "no" but in the 14 years I have known this girl I have learned a few things and one is don't believe a word she says. Not that she is really lying but she bends and twists the facts into an unrecognizable ball of stuff that can only make sense to her. I think it's called confabulation but it should be call confuse-you-lation because that's what it is- confusing! It leaves me scratching my head and saying out loud, "huh"?
The cucumber was no different. I asked her to show me the cucumber and when she held it up, the entire thing was peeled, the entire thing all the way to the stem. I said, I thought you didn't peel it all. Now this is the mind blowing part, she said:" I DIDN'T ". Yet, I am looking at an entirely peeled English cucumber with my own two blue 20/20 eyes. I almost wondered if I was going blind or really was losing it a little because she said it with such confidence while simultaneously displaying the evidence. It made me doubt myself, but just for a second (I'm no rookie).
This is such a small thing, it's only a cucumber, but it illustrates a bigger point that these kids can really push you to your mental breaking point. I know I have 14 years of experience under my belt but I'm still surprised that I'm surprised by these types of behaviors. We have dealt with lying, skipping school, stealing school supplies from teachers, stealing money from siblings, stealing candy at home, stealing candy at school, stealing candy at friends houses, stealing candy from little children (you get it) and lots of other stuff in just the past 2 months yet, and yet, I AM STILL SURPRISED!!! That is what's crazy.
Isabella is the most charming, darling, helpful, pure, good through-and-through child. This type of bold-faced lying stuff is not her and it's not her fault, she just says whatever pops into her head. She doesn't have the benefit of an executive filter like we do or that ever-so-important cause and effect reasoning. And since she is usually trying to dodge trouble or stay afloat she just says the thing that she thinks will have the best outcome for her. It's a crap shoot for her, not a matter of what is true and what isn't.
I'm not sure she actually knows what the truth is sometimes. Like when she told me a story yesterday about a girl (we'll call her Em). Em was Isabella's Jr. high friend for a short time but is now mean to her because according to Isabella, Em had to move to a new home and neighborhood so it has made her bitter and mean. I thought, hmmmm, that is what Isabella really believes. That's how she is making sense of this mean girl. When I offered some other reasons that Em might be mean to her (such as she didn't like Isabella lying to her ) she was surprised and perplexed. The truth of why Em is mean to Isabella makes no sense to her. Funny! Ironic even! I am surprised and confused by the "lies" that Isabella tells and she is surprised and confused by the truth!
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