Anxiety is like being trapped in an Escape Room game played in the dark, being unable to use (because you are not allowed to or don’t have one) a cheat sheet to solve the puzzle that turns on the lights and unlocks the door. Maybe not even knowing what the puzzle is to start with; forgetting half-way through what it was you were supposed to be doing; being without night vision goggles or a flashlight that could help you to find what to do next; not having a partner in the game to work with; not being able to find the door and knowing the time is running out to solve the puzzle.
CJ Lutke was diagnosed with FASD when she was a baby and now, as a member of the Adult Leadership Collaborative (ALC) of the FASD Changemakers in Canada, is a well-known speaker on FASD. She has presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD.
THINKING ABOUT BRAIN IN ANALOGIES FROM THE PERSPECTIVE OF FASD CHANGEMAKERS – Part 3/3
ANXIETY –
Anxiety is like being trapped in an Escape Room game played in the dark, being unable to use (because you are not allowed to or don’t have one) a cheat sheet to solve the puzzle that turns on the lights and unlocks the door. Maybe not even knowing what the puzzle is to start with; forgetting half-way through what it was you were supposed to be doing; being without night vision goggles or a flashlight that could help you to find what to do next; not having a partner in the game to work with; not being able to find the door and knowing the time is running out to solve the puzzle. Knowing you are expected to solve the puzzle. Knowing you have to solve the puzzle. Knowing you must solve the puzzle. Knowing you are desperate to solve the puzzle. Knowing that if you don’t, something will happen but having no idea what, or where, or when or why. Desperately trying to keep the anxiety plate balanced because it is wobbling so badly.
SENSORY – The wild card that just makes everything worse!
Sensory input comes at you from all sides no matter where you are – touch, texture, smells, lights, sounds, movement, balance, no idea what your arms or legs might be doing, no idea where you are in the space around you. EVERYTHING bombarding the person with FASD, all the time, often at the same time, and you never know when or where so you cannot prepare. And what makes something attractive to others might just be what drives someone with FASD into a meltdown.
There are actually eight senses – six or seven that people think about. And the sensory serving plate (actually the eight different ones balanced on the largest plate) is – for many with FASD – the plates they find hardest to keep spinning and balanced, because some things don’t just slip off a plate slowly, a little at a time, or one at a time; sometimes, the plate doesn’t start to wobble first; it just suddenly – and often with what seems to you to be without any warning – spins out of control and flies across the room. It is really the FASD wild card.
And then there is your internal body sense, called enteroception…that 8th sense no one really thinks about.
This is really like a GPS for your body that tells you about how fast you are breathing, how hot or cold you are, if you are thirsty or need to pee, if you are itchy, if you are hungry – or full – if your heart is racing; if you are scared or anxious or tense, if you are feeling pain, things like that…all things that make self-regulation possible. If you can’t feel – or are not aware of – these things normally….how do you attach them to an emotion or what you need to do?? Enteroception is how the brain understands the sensations from the body and is critically important for self-regulation.
This sense can be out of whack much of the time even IF (and for many people it is a BIG “if”) the first seven senses are less of an issue, depending on where you are and what you need to do. All things that can overwhelm someone with FASD, especially in
new or changing situations. You can, and do, go from one extreme to the other in what looks like an instant.
SENSORY OVERLOAD
It feels like you are like running through a car wash while stuck in the middle of a game of dodge ball using multiple balls, played on a bed of nails in a field of long waving grass, while 6 different CDs are playing all at once at top volume, with a strong or bad smell you can’t stand, all under the flashing, colored lights of a disco ball that refuses to stop spinning!!
It all depends on how the individual body responds to stimuli. And since everyone is different; what does not bother one of us will drive another one NUTS.
TIME MANAGEMENT – a version of the game “What Time is it Mr. Wolf?”
Well…. when you have difficulty – as do many of us with FASD – how do you actually interpret time? If I
need to be somewhere at 12:15…. when do I need to start? When is “close” to 12? Or “around” 12? And how long does it take to get to work/school/grocery store? Like…. what IS “how long” anyways?
Time is very abstract and the passing of time – the time that people say they “feel” …. well…what IS that? How do I know WHEN something is?? How does anyone know how long it takes them to do things? When things start and stop? How do I know if I am going to be early, or late, or “on time” for anything when I cannot estimate? How do I relate that lack of a sense of time to the clock? How do I navigate something that exists only as an abstract, only over space I cannot see?
Because when you think about it, time is crazy. Like one hour is 60 minutes. And one day is 24 hours. But a day is actually longer/bigger than an hour, but the number is smaller. And a year of 365 days starts on January 1st…. unless it is your birthday and then it starts on the day you were born so you are actually the same age in two different years in a row. And on a watch you say that it is 3:15 but also that it is quarter past 3…. but a quarter is also 25 which is money….and 15 and 25 are two different numbers but in time, they mean the same thing. How is that? And there are only 12 numbers on a clock but 24 hours in the day…so why do it that way?
And on the right side of the analog clock face…. the number one is counted as a five. The number two is ten. The number three is 15, the number four is 20 and so on. Then you get to the left side of the clock face and the number seven can be either a 25 or a 35; the number eight can be a 20 or a 40 depending on before or after, and so on.
And how does “one” of anything in time relate to “one” in anything else? Because each is a different “one”……like one isn’t one. How does a bigger number equal a smaller number? Thirty days is one month – or sometimes 31, or even 28. Four quarters make one dollar. Twelve eggs is one dozen. One hundred centimeters is one meter.
Time is all a bunch of cycles of “how long” and “when” …. but they are all totally different, so how can they all be the same thing? I know they are, but for many of us with FASD, we don’t understand how they are or how to figure them out. Things like a washing machine cycle, or the warranty on my watch, or the time it takes to bake a potato (like…in the oven? Or in the microwave?) or make dinner or walk to the bus stop; play a game; a swim lesson; a time-out; boil a kettle; a TV show; an appointment; a coffee break at work; paydays; bills due; a season of the year; a hundred different things like that. And don’t get me started on HOW each one is different even from itself depending on what changes; a bunch of more things related to numbers.
And then, what about the fact that you can’t stop time – it goes on no matter what, so they say. But…. they do stop it all the time in sports – soccer, hockey, football and basketball games. They “stop the clock” for penalties, but we are not allowed to stop the clock when things go wrong.
Something I have learned that my Mom talks about with time, is that for most people, the sense of time is an anchor that exists over and across space, and places people in relationship to themselves, others and everything else in their environment. It is what allows them to know who they are and where they are and to remember and predict….so like an anchor, it holds them in place but lets them swing in a circle (that is why clocks and cycles are usually presented as round, I think). It allows them to swing from past to present to the future; from beginning to middle to end; from before to after; when, until, later, maybe, next, about, around, then, if. But when you have FASD, time is more like a straight line because it does not come from inside you because you are not anchored to the ground quite the same way; the past, present and future are not well connected. We do not feel time like others do because it is not an internal construct for us; we do not experience – feel – it internally even when imposed externally by others. And that is a big problem, especially if your memory is not good.
“What Time is it Mr. Wolf?” is the game that outlines life, breaking it into manageable pieces, of many different sizes (and sizes are all about numbers), so you know what is expected. But when you have FASD, you never quite know how to play the game because the rules are so intangible, and you do not have the good executive functioning skills it requires.
The NEVER knowing is so highly stressful and anxiety producing.
AND THAT is why the words “time management” are upside down because that is what it feels like much of the time!!!
CHANGING how something is done – is like playing a game of Musical Chairs; when the routine – the chair that makes learning the music and following it possible – gets removed; the more likely you are to miss sitting on a chair altogether and falling to the floor
If you don’t realize or understand a chair (routine) has been removed (changed), when there are more or different people (tasks) than there are chairs, you don’t get to sit on a chair and you are out of the game.
TOO MUCH TO DO – playing catch-up – too many things to do feels like playing the game of Sorry!
Always feeling guilty and apologizing because, like the picture says, “if you are playing catch-up…then you are behind schedule”!!!! And think about this in terms of expectations.
RELATIONSHIPS – playing a game of Snakes and Ladders:
different people, different positions; different authority; different responsibilities; different times; different places; different ideas; different expectations; different biases
Who is who? What is what? Where is where? When is when? How does it all work? And why????
As soon as you figure out what the rungs on the ladder are with different people, and how to climb them; you make a mistake and slide down the snake and have to start all over again or you have to figure it out with someone else.
Socialization can be a problem. It is also where a lot of bullying of people with FASD can – and does – happen. Sometimes it is obvious and sometimes it is subtle, but it is often there. And it happens in places where you would not expect that to occur, not just the schoolyard or workplace. It is common in adult health services, support services, where disparaging comments “surely you can….”, “well, you must/should know….” shut down communication. Many – even most – adults with FASD have very real difficulty with social relationships as they are so complicated and have so very many silent rules. What starts in childhood as a lack of friends or playmates just continues. Because all people make friends with those who are most like themselves, have things in common and share the same interests. And people of all ages with FASD often/usually do not know others with FASD. The questions is…..why don’t they? Because that is where we fit best and may be most comfortable.
It also goes to expectations….and when you look at what I said about different people, different ages; positions; authority; responsibilities; different times (there’s that word again); different places; ideas; expectations and biases: What do you do? Who do you do it with? When is it okay? When isn’t it? What is okay to do? Where can you do what? How does it all work? How is what you do at a one place different than how you interact somewhere else? Where can I just be myself and be understood?
FOLLOWING A SCHEDULE – playing a game of Battleships
Schedules don’t follow a schedule!! They tend to change from day to day, week to week and have differences every time (that word again!). There is rarely any stable consistency. They simply do not always work well, no matter what you think, and sometimes not at all, for many with FASD. It’s all guesswork most of the time for us – but our reactions look like and are so often interpreted as behaviour. The stress of trying to manage all the components of time, looking ahead and remembering are intensified. This is not about a lack of desire to do what needs doing; and everything to do with disability.
SLEEP – a game of Counting Sheep. No one is at their best if they are tired but imagine if you have FASD and you NEVER (and we mean NEVER) sleep well at the best of times, your sleep is always broken up into small segments and you usually get anywhere from 4 – 5 hours’ sleep a night if you are lucky.
Or, if you are one of those with FASD who once you are asleep, you simply cannot wake up.
And…. regardless…. can’t sleep; can’t wake-up….you are almost always tired…all the time. The impact on “behaviour” (I hate that word) can be significant.
OVERHELMED…..well…what can we say?
Ever seen or done the Mentos mints in coke experiment? Or shaken a bottle of pop
before you opened it? Things are just out of control and sometimes explode. And you will probably not know why since this isn’t a can of soda. Way too much going on….even if YOU cannot see it.
And all the plates are trying to spin, some are wobbling, some are sliding, some are
bashing into each other, and some…… just shatter on the ground…….
People with FASD and particularly adults with FASD are constantly playing ALL the games with ALL of their different rules ALL at the same time…ALL of the time. So……..
ALC FASD Changemakers 