Red Shoes Gala: Lived Experience with Barb Clark

https://www.youtube.com/watch?v=ik_Yua_hZNs

#FASD #FASDAwareness #FASDAdvocacy #FASDSupport #FASDCommunity #FASDLife #FASDFamilies #FASDCaregivers #FASDStrong #FASDMatters  #FASDEducation #FASDPrevention #FASDHope  #FASDJourney #SeatAtTheTable

If you have a child with #FASD get any & all supports you can find

You can’t do this by yourself

You need social workers, OTs, SERTS, pediatricians, respite workers, therapists & support groups to give your child (& yourself) the support needed to be a success

It is OK to ask for help #FASDStrong

Changing the behaviours in #FASDstrong people can certainly be done. However, it’s like turning around an aircraft carrier.

It takes a lot of time
It takes a lot of space
It takes a lot of patience

You won’t immediately see progress. Stick with it. It is happening #FASD

If they're not disregulated, people who are #FASDstrong can show a great deal of compassion & TLC.

This can especially be true when they're working with animals or the elderly #FASD

People who are #FASDstrong are hard working by nature. To make up for their difficiencies, the #FASD brain works twice as hard as a neurotypical brain

If you take this into account with smooth transitions & "brain breaks" when they seem mentally tired, FASD can be quite productive

Because #FASDstrong people are visual thinkers & communicators by nature, they show a great deal of creativity. Many find success in the media or arts

This creativity can also a great outlet to help clear their head & reset their brain #FASD

It’s and natural to focus on the symptoms of #FASD but those that are #FASDStrong have all kinds of strength

When you learn the strengths of your FASD brain you can use those to help with learning & boost self esteem

Framing is everything

When you know how a #FASD brain functions & how it affects symptoms, you can frame behaviour with respect & understanding.

When a #FASDstrong person receives understanding instead of shame, it’s better for their self esteem (and gets you better behaviour).

Because #FASD is lifelong, #FASDStrong people may never be truly independent.

They can function well by being interdependent (depending on the help of others). Examples:

"I need you to grocery shop with me so I stay on budget"

"Please remind me to pay my bills"

"I can drive if someone navigates"

#FASD MYTH: You outgrow FASD as you get older

FACT: FASD is a lifelong disability. #FASDStrong people may learn to live with it but it never goes away.

Symptoms for #FASD vary daily. #FASDstrong people wake up not knowing how well or poorly their brain will function that day.

When you get those bad days (they do happen), & you're frustrated, just remember how they're feeling inside & how frustrated must battling this disability

When someone with #FASD gets deregulated, it will be intense & may have physical/verbal abuse. Do everything you can to remain calm & deescalate. Don't take things personally. Remember they truly don't know what their doing or saying

Always accept their love & apology afterwards #FASDStrong

The #FASD brain has trouble estimating time. If you ask a #FASDstrong person to "be back in 10 minutes", they may be back in 45 (or vice versa). Watches & timers are keys to helping this

They also struggle planning time (to be at work by 9, they need to leave at 8 to be on the bus at 8:15)

People with #FASD need to keep things concrete, physical & tangible

-use timers & stopwatches to keep track of time

-Use cash money. #FASDstrong people often carry their budgeted amount of money until next payday in cash so they can tangibly see how much money they have left

Another brain function that people with #FASD struggle with is understanding abstract ideas or concepts. These include things like time (more on that soon), money & language (slang,sayings & sarcasm) #FASDstrong

A 16 yr old with #FASD is in a tense situation:

-their brain delays telling the best way to handle things
-They can't remember consequences
-dysmaturity has them feeling like a 8 yr old
-they can't control their emotions or resist impulses

And now they are in trouble with the law #FASDstrong

One #FASD behaviour that appears to be impulse control is under/over eating

This however, is again caused by delays in the brain's executive functioning.

Simply put, it is taking longer for the FASD brain to realize that person is full or hungry. #FASDStrong

People with #FASD can also be impulsive. Delays in executive function can lead to the appearance that an #FASDstrong person has no filter or willpower.

Impulse control can manifest itself in the form of addiction, physical or verbal abuse (especially if the impulse is denied)

#FASD MYTH: people with FASD do not know right from wrong

Fact: #FASDstrong people have a strong conscience & moral compass. Delays in executive function (getting info to the brain's front), dysmaturity, & emotional regulation issues contribute to momentary misbehaviour however

Because of delays in executive function as well as dysmaturity, people who are #FASDstrong have trouble controlling their emotions.

So how do I keep my #FASDstrong kid out of trouble?

Use the "snowplough" method of parenting

The same way a snowplough clears your path, you clear you child's mental path so they have a great day

Remove any known emotional triggers & have things ready so their brain works less

Another brain domain affected by #FASD is difficulty with consequences/cause & effect

Remember the FASD brain has difficulty getting information to the front of the brain fast

Therefore, it's difficult for #FASDstrong people to recall negative or positive reinforcement quickly

The #FASD brain actually works harder than a neurotypical brain. It takes longer to rev down, transition & then rev up again. This is called tendril theory as explained in the photo

More time needs to given to #FASDstrong people to transition. Wherever possible avoid surprises

The next brain function affected by #FASD is transitioning

Because it takes longer for information to reach the front of their brain, people who are #FASDstrong have difficulty transitioning from task to task, environment to environment and/or person to person

MYTH: people with #FASD are lazy

FACT: When #FASDstrong people fail to do tasks, it's because their brain forgets they need to be done or how to do them

Like CEOs needs an EA (executive assistant) to organize their day. An FASD kid needs an EA (educational asst) to help organize their school day

The first brain domain affected by #FASD is planning, organizing & sequencing

Kids who are #FASDstrong have issues with planning their day, managing their time (more on this later) & remembering the order of tasks (dinner, then homework, then play) #FASDstrong

In addition to dysmaturity there are also numerous brain domains affected by #FASD . I will go over each of these brain domains and how it affects somebody who is #FASDstrong. I'll also bust some myths along the way!

Just a reminder that tomorrow (September 9th) is FASD awareness day.

#FASD awareness day is recognized on the ninth day of the ninth month to symbolize nine months of an alcohol free pregnancy

You can help celebrate it by wearing your red (especially if you have some red shoes!) #FASDstrong

Dysmaturity for #FASD individuals manifests itself at different levels for different skills

For skills such as expression, #FASDstrong individuals can have a maturity beyond their years while being way behind in social skills

Remember, FASD is a spectrum disability so everyone presents differently

What’s the difference between dysmaturity and immaturity:

Immaturity is when someone CAN act your physical age but are choosing not to

Dysmaturity is when someone cannot act your physical age (even if they tried)

When you’re dealing with #FASDstrong people remember- “stage, not age”