My son is 7 years old. He’s a cheerful, musical, curious,
animal / outdoor / reckless crazy stunt - loving, whirlwind. He also has Fetal
Alcohol Spectrum Disorder (FASD) — one of the 3 out of 50 kids in the USA who are
estimated to be affected.*
Prenatal exposure to alcohol changes the structural development
of the brain. It can affect other parts
of the body too but the brain sees the most impact. Here’s the biggest thing I want to tell you
about my son. He is neither damaged nor
broken — he’s an example of human variation.
All kinds of genetic and environmental influences cause variation in
each and every human being born. Just
because we know what caused my son’s brain differences doesn’t make him less
valuable and that’s what damaged means you know, harmed or injured resulting in
loss of value. So no, he is not brain damaged. He and his brain are not less valuable. His
brain functions – just differently than typical. He is neurodiverse. (Or as my teenage daughter prefers – Neuro Divergent )
I have to admit that at first I let FASD’s differences terrify
me: I read the grim statistics published about life outcomes for people
affected and I was almost paralyzed with fear.
But slowly I am coming to realize – my job as Little Man’s mother – is
not to layer him in bubble wrap and tuck him away from the world to keep him
safe. A life that limited is not really
much of a life after all. My son is not “perfect.” Neither is the world. I’d argue that “perfect” does not exist other
than a concept. I want my son to live a
life rich in opportunity and experiences, to know how to live as his imperfect
self in this imperfect world and still appreciate its beauty. So my job is to model for him how to do that,
which means I cannot live in fear and I cannot isolate him. I have to seek out the beauty in his
difference and continuously expand his opportunities for connection.
Part of that is not only appreciating Little Man for
exactly who he is but helping others understand and appreciate him as
well. This is an ongoing effort
partially because those grim statistics that frightened me so are the majority
of what everyone else knows about FASD.
The world’s reaction to difference or divergence of any kind is one of
those world imperfections. Myths, misinformation,
misunderstandings, fear and a pervasive culture of conformity are the first
reaction to divergence and have to be faced down over and over.
We need better awareness about FASD and how it impacts
those affected. We need to train doctors, parents, children, teachers and
community members to be understanding and supportive because that is what will
reverse those grim life outcome statistics.
People with FASD do not become depressed, suicidal, and homeless or turn
to drugs, alcohol and crime because they have FASD. It happens because they are misunderstood, frustrated,
and ostracized. So here are some specific things I’d like people to know
about my Little Man, besides the fact that I adore him so completely. I like to
think someday he will be able to share these things for himself with those he wants
a connection to but people affected by FASD often have uneven skill development. Little Man’s communications skills may
eventually be up to the task, but his self-observation skills may not be, so it’s
my hope that you will consider these 9 points —from his mom – to help make real
connections to the world more possible for him:
1. Slower processing does not mean non-intelligent. Little
Man hears and absorbs almost everything people say to him, and in front of
him, whether or not he responds in a way that makes sense to you. Even when he doesn't understand he stores it away to come back to later. He often repeats bits of conversation word for word to me at a later point and asks for clarification. So, please, do
not talk about him or things that are not appropriate for him to hear in
front of him as though he’s not even there, its a bad idea. He’ll remember, he won’t
like or trust you, and if you've said something really inappropriate I won't any more either.
2. Little Man appreciates and
thrives on your patience, because, as I’ve said, it usually takes
him a few beats longer to process spoken words. So give him a moment, once
you’ve said something to him. Don’t repeat (with or without) using different
language or shout. You are just piling
on more for him to process when you do that.
He hears you. Give him some time
to respond. (And maybe slow down your
rate of speech too if he seems to be struggling.)
3. Little Man does
best with concrete subjects and language.
Abstract topics
like money and time are a struggle for him.
So are figures of speech. You can
help him understand time by talking about concrete events. “We will go after lunch” means more to him
than “We will go at 1:00”. Also, if you
mean “Let’s go now” then say that. “Time
to hit the road” is just going to confuse him.
4. Little Man craves sensory
input. Sometimes
he really needs his weighted blanket on his lap or to push, pull, or carry
heavy objects. It helps him feel
grounded and relaxed. He also needs to touch
everything, to bounce, to chill out in a swing or sometimes to just run &
spin in circles. It all depends on if his system needs speeding up or calming
down. He can’t do that internally
without the external input. Most people
with FASD have some sensory differences.
They can be over or under responsive.
It helps tremendously when you can be accommodating of their needs.
5. For Little Man repetitive sounds or
“stimming” are another form of sensory seeking / self-soothing. So, if he’s
repeating the same word or sound over and over, tapping on the desk, or kicking
at the chair, please let him be if possible.
He’s not doing it to be annoying, but because he needs it in some
way. (It is important you respect the
stims– it’s usually what is helping him hold off a meltdown. I know that it is
not always possible to ignore stimming in every setting. In those cases please work with him on trying
to find other less intrusive ways to get what he needs.)
6. Eye contact is not always a priority for Little Man. Some
days you can have his attention, or his eye contact, but not both— managing the dual
focus can be overwhelming for him if there is a lot of other stimuli
going on or if he is trying to process something complex or if he’s just having
a bad day. Strong emotion makes eye contact especially hard for him. He will give you eye contact when he can - on his own terms. Please don’t demand or force it. shouting :look at me when I'm talking to you" is never going to help. (Remember Autistic people also find direct eye contact discomfiting, and by
the way, it is even considered disrespectful in many parts of the world.)
7. Little Man is a
bottomless pit. He
eats almost as much as a grown man most days.
His metabolism just runs super-fast probably because he is such a
perpetual motion machine. I know he
looks like he is skin and bones but we do not starve him, I promise. If he’s out of sorts with you – he may very
well be hungry. A snack might be just
the thing to restore his normally sunny disposition.
8. No offense, but in spite
of how much Little Man loves having friends he is not just waiting around for
neurotypical people to be friends with him. He is extremely imaginative and can
entertain himself very easily. He is perfectly content to live in his own imagination. If you’re
interesting though, if you genuinely like him, and if you take the time to really talk to him, he will want to be your friend. He is very openhearted. He just likes people and most of the time people really like him, even people who don't think they will at first. He is a good friend to have, caring, loyal and
generous. If you are patronizing to him
or not being genuine he will know it.
9. Little Man is happy. We
don’t hear this enough about people with FASD, since messages about Fetal
Alcohol tend to center on prevention and play up the problems and negative outcomes. It is true Little Man
has his struggles and frustrations. What
person on earth does not? They do not
define him though, any more than yours define who you are. Like I said at the beginning, children and adults with FASD are not depressed or defiant or aggressive because of FASD. They become those things because of chronic frustration caused by living without support and understanding of their differences. Little Man’s happiness stems from
feeling loved, and accepted, and supported just as he is. You can help keep him that way by
understanding and accommodating him as well.
Of course people with FASD are just that, people, each
one similar in some ways and individual in others. I’ve given you some specifics about Little
Man. Others affected will have some of
the same characteristics, and some that are specific to them. You can help them all however, as well as
people who are different in other ways (ASD, ADD, OCD, etc.) by just being open
minded about neurological diversity.
* Estimates for FASD prevalence vary widely – being as
low as 1% and as high as 12. Most people
believe the higher numbers are more accurate but to be conservative I’ve gone
with the middle ground.
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