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 :)
Wednesday, September 17, 2014
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.
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