"Youth with FASD find belonging in mentorship program"

A story was done by UBC Thunderbird Journalists on FASD and specifically, our FASD Youth Mentorship program! The link to the article can be found below.

Asante Centre’s FASD Peer Mentorship Group is a community-building program led by two adult mentors living with FASD. Participants who are currently involved in the program come each week to learn more about themselves and build meaningful relationships with others who have similar successes and challenges.

We are so thankful to Grace, one of the program participants, for sharing her side of the story. She is truly a wonderful young woman, doing amazing things for the FASD community by sharing her truth on this platform.

Here is the link to the article: https://thethunderbird.ca/2019/04/17/fasd-mentorship-program/

Going For Coffee: An Obstacle Course of Stimuli - by CJ Lutke

Picture an air filter. What does it do? It stops all the dust and bits from entering your home and filling your house and body with all sorts of things they don’t really need.  I liken this  to what happens when I get what always feels like an attack – an overload of sensory stimuli.  My filter does not work like everyone else’s – like yours does, not unless you also have FASD.

For instance, you or someone else may walk into a coffee shop, read the menu, order your coffee and go on with whatever it is you are doing and the rest of your day.  You take in all the things I am going to describe, but decide in a quick moment “these things are not important - IGNORE”.  In fact, this may be a daily thing for someone, or you might do it multiple times in one day.  It is something you might look forward too, enjoy and savour.  When I walk into a coffee shop it is a very different experience.

 For me, first I have to take into account that, by walking into the shop, I have radically changed the environment I was in mere seconds ago.  Everything - from temperature, to smells, to colour, to everything I can see around me, to sounds, to how things feel, to the physical closeness of people.  My brain takes these all in (as does, I am sure, yours). However your brain quickly – and automatically - determines what is useful and what is not.  For example, you know right away that the man with the lap top who also has a man-bun in his hair (why does he have that??) sitting at a table is not important.  I can’t help but notice and try to figure out if I need to pay attention to him.   Neither can I ignore  ALL  the sounds; talking (like 10 different conversations going on at the same time);  humming sounds from lights, shuffling feet, cell phones  ringing with a million different ring tones, the coffee machine grinding noise,  the shouting of names after someone has ordered, the tap, tap, tap of laptop keys (and yes, I can HEAR them) music playing, purses dropping on the floor, shopping bags rustling, doors opening and closing) it can feel like an attack on my system.  It doesn’t have to be loud it just has to be every sound ever in a coffee shop. The lighting – overhead, fluorescent, bouncing off anything shiny like glass or silver machines, coming in from outside and changing if a cloud covers the sun).  And so many smells – they can be awful, even though I KNOW that they are just fine to other people.  People bumping into me is uncomfortable.  My filter has let all of this in. I have no defense against it.  

Now I have to make my way up to the counter, with all this going on, keeping in mind what I would like to order. Do I have my coffee card? Cash? Do I have my wallet? Most likely I know I have these things, but I have to struggle to remember (and that causes me to be very uncertain because what if I don’t have it??).  There are people in front waiting to order and people behind me. The people in front order their drinks; now it is my turn. The barista is very friendly. It is her job, but  I often do not remember it is her job to be nice (because of everything that is going on around me), then I feel like it is my job to continue the interaction because of social rules, even though I actually KNOW I don’t have to in this situation.   “Hi how are you? What can I get you today?” she asks. The people behind me are talking and I can hear them.  Two conversations at once.  Now I am trying to process what the Barista says. I feel I MUST answer - “I am fine” how are you?” I ask.   She says she is fine. I think I have to say something more.    I stumble over finding something more to say.  What do I say?  “What can I get you she repeats?”   I am looking at everything around me. I know what I want. I order it every single time I go to the coffee shop; I never deviate because it is just too hard to think when I am in this kind of a situation.  But I can’t seem to process. My filter has let too much information pass, I am stuck shuffling through all the information; just to pick out what it is I want. Then I start to panic. I am not getting the information out quickly enough, I am wasting the barista’s time! She isn’t going to say anything because that would be rude, I start to make incoherent sounds, umm umm err. I finally spit out “Americano!” an Americano please.” “Room for cream? she asks”  Again another question.  I still have to concentrate to answer. “Yes” I respond. Then she asks “is that all?” Is it? Do I want something else?  If so what?  There are many things on display I could get. Do I want any of them?   Am I hungry?  I am taking too much time!!  “No thanks” I reply. 

Then she asks for payment, and it’s another round of panic, because no matter how many times I have done this I never seem to have my wallet out.   I mentally chastise myself every time.   I had time to do this in line up; it would have gone much faster if only I had remembered.   Now I am stuck fumbling for the payment option, I am just wasting everyone’s time.   Finally the interaction is over, and all I have to do is move to the other end of the counter and wait for my drink!    Then:  which is my cup?  Do I have the right one?  What if I don’t?  What do I do?  After finally grabbing my drink, I make my way over to the table that holds the cream and  sugar.   I finally have a cup of coffee!   All this probably happens within a few minutes but it feels like forever and my stress level is way up. 

The point of this rather long  - and very incompletely - detailed experience is to highlight what goes into doing something other people see as very simple. But it takes many times more energy for me, because my brain is built and functions differently.   I have used a coffee shop as an example but these “moments” occur all day long and add up during the day, and can leave me – and most people with FASD that I know -  very mentally exhausted.   All this does not mean I avoid going for coffee or never leave my house.  I do these things; it just takes so much more energy.  Some of the time I have found ways to minimize these sensory and information overload situations.  Other times, there is no real way around them.  That is just life.

I tend to avoid very busy “peak times” in stores.   So I try not to go to shops on the weekend, or go places I know will be busy.   For example around 3:00 is when the school crowd goes for coffee, I avoid it.   Or I go very early morning to a grocery store.   I visit the same coffee shop, clothing store, grocery shop etc. all the time as my rule for coping.    Variety is not fun.  This way I know the layout and what to expect and I am not bombarded by as much of the sensory stuff.  A sense of familiarity helps, but doesn't stop the stress.  It just minimizes it somewhat.  Sometimes wearing headphones works, because then I can just focus on one sound stimulus. Even wearing sunglasses helps in certain places.

Recognizing what works and what doesn’t.  For example, if there is a different store or place I decide to go into for some reason and it has weird lighting or very loud music, I either do not go into it or really limit my time there.  And recognize when I must leave.  The signs are different for everyone.

I try to be kind to myself (with sometimes mixed results). That is one of the harder pieces of advice I have learned; to be kind to myself.  It does not come easy; to remember that my brain works differently.  I don’t have to explain to anyone that it does; only to remember myself that this is normal for me.

I try not to go places when I am having an “off” day.  Sometimes this is unavoidable if I have to go to work, but I sure don’t go shopping or for coffee on “off days”; it is just not worth it.

I'd like you to consider that sensory issues are not in the diagnostic guidelines, but I think they should be.   Almost every person I know who has FASD, children, teens and adults, has sensory problems that can make things very difficult.  When you combine them with processing and memory problems, life can be very draining and can become extremely difficult.  It can look like being a "jerk, or moody – refusal to participate, sometimes it looks like agitation, or in children – hyperactivity.  And these things can also make it very hard because the words "it's just behavior" get thrown around like it's a conscious choice, and we can fix it.   Wrong.   It is neurological.   Period, end of story.    I am lucky – I can actually understand and verbalize – now , today, at the age of 35 – what is happening to me.  Because I know this – now - I can recover more quickly – now - than someone with FASD who is much younger and does not understand or cannot verbalize as well – and may never be able to do so.

It helps us if those of you who do not have FASD remember this.

Representation

By CJ Lutke

“It’s hard to accept yourself in a world where nobody is like you or you feel like nobody is like you because there is no representation”

— Lauren Jauregui

As a person with FASD I never saw myself represented in television or books. The closest character I could relate to was Amelia Bedelia because in the books she would take everything literally, like if someone asked her to “draw the blinds” instead of closing the blinds she drew a picture. The representation ended there. Amelia Bedelia is a fictional, one dimensional character.  I am not. Neither is anyone else. Being represented and involved in the mosaic of society is important, it is a basic human instinct to belong. It is especially hard when you are different and sometimes the differences cannot be seen. When you act or think differently, because there is no reference point or example of anyone else having these troubles one can feel very isolated and that makes things even more difficult.

I have found that not being represented has its problems. When I tell somebody I have FASD I hear a number of things like: “what’s that?” When I tell them, they say “oh yeah I’ve heard of it, but I don’t know what it is.” This is despite the fact that FASD is the leading cause of birth defects, with at least 10% of the population born with it. When someone does think they know what FASD is, they often say things like “oh you don’t look like you do” or “do you just have a mild case?” These things can be hurtful, and even dangerous. People need a reference point, and these days it is usually needs to be in the media.  When people are not represented or depicted as whole people, they are not understood, they are not accepted.

For a long time the only things people thought about in regard to FASD were the severe facial features and the shocking brain pictures of the 1970’s. So if you didn’t fit into those categories, to the majority of the public, you didn’t have a problem, therefore you should act and think and preform like everyone else. What the public doesn’t know is that the brain picture is that of a 6 week old baby who did not survive. Our brains do not look like this. I advise anyone who has FASD or anyone that knows someone with FASD,  not to pay any attention to this picture. Shocking though it may be.

In the last few years though people have started to hear about FASD and it is mentioned  more frequently. However, the information being taken in by the larger public seems to be limited to a few sentences in a science or medical text book, information that is so old it should be carbon-dated. F.A.S.D has almost, in my opinion, been promoted to the newest boogie man. Something people are afraid of but never have seen. It gets mentioned but nobody knows quite what it is. Ignorance is not always bliss especially when it comes to knowledge about this disability.

This brings me to my next issue.

The things said about FASD in the media.

I have noticed recently that the topic of FASD is being mentioned more and more in media, however mostly negatively. For example, the movie Bad Santa 2 shows Billy Bob Thorton and Kathy Bates discussing whether the kid in the film has ” fetal alcohol syndrome.” Let me set up the scene... The kid in the film is slow and naïve. They are all sitting in living room and the kid says “one time I ate turkey bacon and didn’t poop for three weeks.” To which Kathy bates asks “Is this your spawn?” Billy Bob Thornton, offended, replies “do I look like I made him?” and Kathy bates reply is “well if that ain’t fetal alcohol syndrome then what is it?” This exchange happens in the trailer for the movie. This is one of the scenes producers found okay to advertise to get people to watch this movie! 

Some other examples: on the tv show Young Sheldon, Georgie is depicted as dumb and failed a math test. Sheldon questions if his mother drank alcohol while she was pregnant with Georgie. On the Netflix series Orange is the New Black, there was a simplistic stick drawing on the wall and one of the women wondered if a person with FAS drew it. Just a few days ago (while working on this blog), I took a break to watch Seth Meyer’s show, one I enjoy watching and which boasts having “a diverse group of writers.” During his show he made a harsh statement. In a segment called “You Burnt,” he talked about shark week. In this segment he says “hammer head sharks -  what’s up with that weird ass-head? Did ya mamma drink while pregnant?” 

If we are not being portrayed in Hollywood as stupid or dumb or being laughed at, we are being vilified in the news media. FASD is being blamed for crimes being committed. One of the most recent is a Daily Mail article about a shooter in Florida having FASD – this has been proven to be untrue. Whenever someone with FASD does commit a crime it the head line reads “ individual committed crime, suffers with FASD.” This is true that people with FASD do end up sometimes entangled with the justice system but so do many other people. And nobody ever reports how many crimes are committed against someone with FASD, the media only reports the crimes committed by someone with FASD.  We are portrayed as murders and rapists, unable to not do these things because of our brain damage. I, for one, have never murdered or raped anyone and have managed to live 34 years with this disability. Also as if wonders never cease, I don’t have a head shaped like a hammer head shark.

In any other brain and body-based disability (autism, Down Syndrome) no one would EVER consider these harsh remarks or depictions funny, or acceptable. Why FASD?  It needs to stop! Not only are they wildly inaccurate, they are deeply hurtful and as I said dangerous. Remarks have real world impact on what people think , how they feel and how they view themselves in relation to others.

This disability is already stigmatized, we don’t need to feel more isolated than we already do. As a person with FASD, messages like these sent out into the world make me sad, and truthfully a bit scared. I know these portrayals don’t represent me or people I know, but the world that doesn’t see us as people, will see the media version. It makes our world all the more unsure and much harder than it has to be.

FASD is a disability, and it is real! It impacts and affects everyone differently and has many different aspects to it. But beneath all this, we are people, in search of acceptance and belonging. We are not perfect. Neither is anybody else. However, I think a more accurate and diverse depiction of people who go through life with this disability should be represented and encouraged. We can no long afford to be left out of the mosaic of human life. We count. We belong.

My Why

I love the end of Summer. As the warm weather wanes mornings become crisp. It’s a time of transition: children going back to school, and apples beginning to ripen.  It is the latter that brought me to a local apple farm in early September. My two little boys (ages 4 and 1 ½ ) have friends the same ages, there are 8 of them in their little group, nicknamed “the wolfpack.”  As I walked around the farm enjoying my latte and watching them play and interact, I felt happy and inspired. They were building connections, laughing, playing and showcasing their independence. In that moment, for them, ANYTHING was possible. They were happy and innocent, full of opportunity and promise.  

As an employee of a non-profit I am frequently asked why I do what I do. It is in these moments of joy and inspiration that my “why” becomes glaringly obvious. I work in this field because I want to be a part of a world that has every person feel that same connectedness, promise and opportunity; regardless of (dis)ability, socio-economic status, gender or gender identity, sexual orientation, race or ANY real or perceived difference. I want to build a world where unlimited promise, opportunity and connection are a human right and not a privilege. Because these opportunities are in fact, a privilege.

You see, aside from spending a great deal of my time working at the Asante Centre - putting my blood sweat and tears into an organization dedicated to helping people who have experienced impacts from developmental stress exceed their own expectations - I am a sibling of someone on the autism spectrum. I have had a front row seat to witness what a privilege it is to have access to services, opportunities and even the ability to connect with other human beings.

This world is full of rhetoric that tells us that people who are living in poverty or struggling are doing so because they “won’t.” There is little room in the court of public opinion for the harsh reality that there are very real barriers out there and it is rarely a matter of unwillingness to act but rather a matter of inequitable access to the same services that I, as a straight, cisgender, Caucasian female have. I say this not to apologize for who I am, but to acknowledge the privilege that I have, with the full realization that this privilege (however unfairly) allows me to have a louder voice than some, perhaps louder than most. My “why” calls me to use that voice for action, to use it to help build a world where unlimited promise, opportunity and connection are innate human rights.

Misconceptions around FASD: Interview with Simi Sara

"The AGLC launched its Dry 9 movement earlier this month,  to create greater awareness of the effects of alcohol and pregnancy. The video and its message got us thinking about the issue of Fetal Alcohol Spectrum Disorder and how common it is in Canadian Society. Do we need more education campaigns on the effects of FASD?

Alison Pooley is the Executive Director of the Asante Centre, a not-for-profit organization providing a variety of services related to Fetal Alcohol Spectrum Disorder (FASD), Autism Spectrum Disorder (ASD) and other complex developmental needs."