Miggy: Inga! Hi and thank you so much for
participating in our special needs spotlight today. As mentioned you
are a single mom of 4 adopted children–wow! I’m already in awe of
you. In addition two of your children have fetal alcohol spectrum
disorder. First, can you educate us a little bit about this condition?
I know this happens when a mother drinks during pregnancy, but beyond
that I don’t really know anything. How much does a mother have to drink
to affect her child? What are some of the hallmarks of this condition and
what sort of treatments or therapies are used to help affected children?
participating in our special needs spotlight today. As mentioned you
are a single mom of 4 adopted children–wow! I’m already in awe of
you. In addition two of your children have fetal alcohol spectrum
disorder. First, can you educate us a little bit about this condition?
I know this happens when a mother drinks during pregnancy, but beyond
that I don’t really know anything. How much does a mother have to drink
to affect her child? What are some of the hallmarks of this condition and
what sort of treatments or therapies are used to help affected children?
Inga: FASD is an umbrella
term covering several conditions related to a mother’s consumption of alcohol
during pregnancy. These terms include Fetal alcohol syndrome, fetal
alcohol effects, alcohol related neuro-developmental disorder, partial fetal
alcohol spectrum, and a few others. Doctors look at 4 areas when trying
to reach a diagnosis: a pattern of small growth, below the 25th percentile,
facial features, such as small, close-set eyes, a “ski-jump” nose,
flat features, especially a flat space between the nose and mouth; cognitive
delays or memory issues, and known alcohol exposure in utero. There is a
misconception in the public that only women with alcohol addictions have babies
with FASD. This is simply untrue. FASD is actually more common than
Down Syndrome or autism. In North America, about 1% of people have an
FASD, but many of these are undiagnosed. The information I want to
stress is that there is no safe amount of alcohol to consume during pregnancy.
Just one drink a day puts a baby at risk, and just one incident of
binge drinking in early pregnancy also poses a risk. Binge drinking is
considered to be 5 or more drinks on one occasion.
term covering several conditions related to a mother’s consumption of alcohol
during pregnancy. These terms include Fetal alcohol syndrome, fetal
alcohol effects, alcohol related neuro-developmental disorder, partial fetal
alcohol spectrum, and a few others. Doctors look at 4 areas when trying
to reach a diagnosis: a pattern of small growth, below the 25th percentile,
facial features, such as small, close-set eyes, a “ski-jump” nose,
flat features, especially a flat space between the nose and mouth; cognitive
delays or memory issues, and known alcohol exposure in utero. There is a
misconception in the public that only women with alcohol addictions have babies
with FASD. This is simply untrue. FASD is actually more common than
Down Syndrome or autism. In North America, about 1% of people have an
FASD, but many of these are undiagnosed. The information I want to
stress is that there is no safe amount of alcohol to consume during pregnancy.
Just one drink a day puts a baby at risk, and just one incident of
binge drinking in early pregnancy also poses a risk. Binge drinking is
considered to be 5 or more drinks on one occasion.
Miggy: As you said, you have two children affected
by this disorder and since it’s a spectrum disorder I’m assuming they each have
different challenges. Can you explain how your children’s needs differ
and how they affect your day-to-day life?
by this disorder and since it’s a spectrum disorder I’m assuming they each have
different challenges. Can you explain how your children’s needs differ
and how they affect your day-to-day life?
Inga: FASD has a range of
symptoms, but some of the most common are extreme impulsivity (act first,
think later, or not!), an inability to comprehend danger, and an inability
to understand cause and effect. This is the child who will always touch
something hot, no matter how many times he’s been burned, or climb to your roof
and jump off just because it looks fun. Disciplining such a child can be
very challenging, because they often have no idea why they have earned a
reward, and no idea why they are receiving a consequence. Lying and
stealing are also very common. People with FASD often can’t distinguish
between fantasy and reality, so if they want it to be true, it is true, even in
the face of overwhelming evidence to the contrary. The other night,
I caught my 12 yo with matches. She cried for 10 minutes, insisting
that she got them out so she could put them away! Finally, we were able
to discuss why it wasn’t safe for her to have them, or to be lighting candles
without Mama in the room.
symptoms, but some of the most common are extreme impulsivity (act first,
think later, or not!), an inability to comprehend danger, and an inability
to understand cause and effect. This is the child who will always touch
something hot, no matter how many times he’s been burned, or climb to your roof
and jump off just because it looks fun. Disciplining such a child can be
very challenging, because they often have no idea why they have earned a
reward, and no idea why they are receiving a consequence. Lying and
stealing are also very common. People with FASD often can’t distinguish
between fantasy and reality, so if they want it to be true, it is true, even in
the face of overwhelming evidence to the contrary. The other night,
I caught my 12 yo with matches. She cried for 10 minutes, insisting
that she got them out so she could put them away! Finally, we were able
to discuss why it wasn’t safe for her to have them, or to be lighting candles
without Mama in the room.
My children are affected differently. My daughter is
impulsive, and struggles to tell the truth if she thinks the truth will get her
in trouble. My son has an intellectual disability (IQ below 70).
This sometimes accompanies FASD, but not always. He is also
impulsive, and struggles to do daily tasks. He thrives on routine, to the
point of a massive fit if I cut his sandwich differently. He cannot
sequence events, and can’t make predictions about even the simplest things.
If he is getting dressed, and can’t find socks, he will come out of his
room naked, screaming that he can’t get dressed. It is truly
incomprehensible to him that he could get dressed without socks and then go
look for them.
impulsive, and struggles to tell the truth if she thinks the truth will get her
in trouble. My son has an intellectual disability (IQ below 70).
This sometimes accompanies FASD, but not always. He is also
impulsive, and struggles to do daily tasks. He thrives on routine, to the
point of a massive fit if I cut his sandwich differently. He cannot
sequence events, and can’t make predictions about even the simplest things.
If he is getting dressed, and can’t find socks, he will come out of his
room naked, screaming that he can’t get dressed. It is truly
incomprehensible to him that he could get dressed without socks and then go
look for them.
Miggy: What are the biggest worries you face for
your children?
your children?
Inga: My biggest worry
for my daughter is addiction and early pregnancy. Seventy percent of
girls with FASD have an addiction issue at some point. Early pregnancy is
even more common than that, and frequently results in their children going into
foster care. I believe she will be able to parent some day, if I can get
her to wait until she is really ready. My concerns for my son are that he
will never be able to live on his own. Adults with his intellectual
disability sometimes live alone, but many live in group homes. I also
fear he will not be able to be married or to parent. I am trying to
maintain the attitude that I will do my best to give him the skills he needs,
and then if he needs a group home, to be accepting of that. It’s hard,
but I am trying.
for my daughter is addiction and early pregnancy. Seventy percent of
girls with FASD have an addiction issue at some point. Early pregnancy is
even more common than that, and frequently results in their children going into
foster care. I believe she will be able to parent some day, if I can get
her to wait until she is really ready. My concerns for my son are that he
will never be able to live on his own. Adults with his intellectual
disability sometimes live alone, but many live in group homes. I also
fear he will not be able to be married or to parent. I am trying to
maintain the attitude that I will do my best to give him the skills he needs,
and then if he needs a group home, to be accepting of that. It’s hard,
but I am trying.
Miggy: Now for a lighter question, I’m a big
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special needs
situations?
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special needs
situations?
Inga: You asked for a
funny situation. We laugh a lot. One day, I went downstairs to look
for something, and came back empty-handed. I went down again, and still
came back with nothing. I had forgotten what I was looking for. My
daughter grinned at me and said, “Mama, maybe YOU have holes in your
brain!” We collapsed in giggles.
funny situation. We laugh a lot. One day, I went downstairs to look
for something, and came back empty-handed. I went down again, and still
came back with nothing. I had forgotten what I was looking for. My
daughter grinned at me and said, “Mama, maybe YOU have holes in your
brain!” We collapsed in giggles.
Miggy: How can people best approach or respond to
your children? Is there something you wish other people knew so as to avoid
awkward or hurtful situations?
your children? Is there something you wish other people knew so as to avoid
awkward or hurtful situations?
Inga: My kids appear
normal, so their behaviour is often misinterpreted as defiance or
rudeness. I wish people recognized that they are still disabled, and
would just show patience.
normal, so their behaviour is often misinterpreted as defiance or
rudeness. I wish people recognized that they are still disabled, and
would just show patience.
Miggy: If you could talk to birth moms who are
drinking or considering drinking during their pregnancy, what would you say?
Is there any advice you would give a person who is considering adopting a
child with fetal alcohol spectrum disorder?
drinking or considering drinking during their pregnancy, what would you say?
Is there any advice you would give a person who is considering adopting a
child with fetal alcohol spectrum disorder?
Inga: I would
counsel women to avoid alcohol completely during pregnancy, but my advice
goes further than that. If you are planning on trying to conceive, it is
best to abstain during that period, too. Many women don’t realize they
are pregnant for several weeks, but permanent brain damage can be
done in those early weeks. Occupational therapy, speech therapy, and
educational supports can help, but there isn’t a cure for FASD. The
secondary disabilities for adults with FASD include chronic
unemployment, homelessness, jail for boys, prostitution for girls,
and addictions for both. Homelessness is a big issue because many people
can’t budget their money well enough to pay rent, and can’t grasp that if they
don’t pay rent, they can’t stay.
counsel women to avoid alcohol completely during pregnancy, but my advice
goes further than that. If you are planning on trying to conceive, it is
best to abstain during that period, too. Many women don’t realize they
are pregnant for several weeks, but permanent brain damage can be
done in those early weeks. Occupational therapy, speech therapy, and
educational supports can help, but there isn’t a cure for FASD. The
secondary disabilities for adults with FASD include chronic
unemployment, homelessness, jail for boys, prostitution for girls,
and addictions for both. Homelessness is a big issue because many people
can’t budget their money well enough to pay rent, and can’t grasp that if they
don’t pay rent, they can’t stay.
Miggy: What is the biggest lesson you’ve learned
since becoming a special needs mom?
since becoming a special needs mom?
Inga: The biggest lesson
I have learned is that I can’t change what happened to them before they were
born. I can only do my best for them, and leave the results to God.
I have learned is that I can’t change what happened to them before they were
born. I can only do my best for them, and leave the results to God.
**************
Hey guys! The spotlight is back! Hopefully it will be on a consistent basis, but if not please be patient with me…I’m still getting my sea legs here.
Thank you so much Inga for participating today and educating us about fetal alcohol syndrome–such an important message. I had no idea how far reaching the consequences of FASD can be and how common it is… honestly I’m sure a lot of people don’t so this is really wonderful and important information. I am so glad your kids have a wonderful mom who choose to be their mom and who will help them live up to their potential. You’re an inspiring woman Inga! Best to you and your family.
Friends! Please help me get the spotlight back up and running! If you or someone you know would like to participate please email me, or have them email me directly, at thislittlemiggy at gmail dot com with “spotlight” in the subject line. Also, if you emailed me in the past I’m still trying to get around to emailing you all again…so please be patient, or better yet send me another email letting me know you’re still interested. Thanks!
Have a fantastic weekend.
thanks for sharing your story, and Miss M I cannot believe you are doing the SNS with a new born!
Take care, xxxx
This was very enlightening. Darling children!
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