9/9: FASD Awareness Day

A while back, another adoptive friend connected me with a website that has REALLY been helpful for us in understanding and accepting how B&C's brains work (or don't sometimes).

I saw it explained on there like this once:

If all of our brains are filing cabinets with all of the info we know filed neatly in rows... For people with organic brain injury, they have all the files... but they're flung in a big pile on the floor. They just can't find what they know, even though it's in there.

That's why Brynn asked my dad if she could have "one of those things that you have at your house. You know it's a black thing, then a white thing, then a black thing."   She's knows what an Oreo is. It's that thing on the top shelf that Mom and Dad eat after she goes to bed. It's in there, but she really struggles to find it sometimes.

"We provide ramps and elevators for people living with a physical disability. We also need to provide ramps for those living with an invisible physical disability like (FAS/FAE)- by not doing so we are robbing human beings of a quality of life they deserve."

This is our life. This is why homeschooling is the best option for them right now. They need more one on one, they need more sensory stimulation (or sometimes less), and need to focus on skills a little off the beaten path. And that's okay.

This is what works for them:

Mixing site words with jumping jacks.
Or relay races. Or any other proprioceptive input.

I'm sure the neighbors think we're nuts when they see my kids outside running circles around the front yard yelling random rhyming words. My kids LOVE it.

Sensory + repetition = our best shot at remembering.
Some days, they can sit down and read a whole book or write a paragraph. The next day they can't spell 'cat' and asking them to do so leaves them in tears. I've heard so many people in my children's lives get frustrated (Trust me, we are at the top of that list. BECAUSE IT'S HARD.) about how many times they've had to tell them something or they've done something they themselves said they knew not to do.

"Just because someone living with Fetal Alcohol can say "it" doesn't mean they understand "it". Often times their expressive language is greater than their comprehension, making them appear more capable than they really are. "

I get it. I sometimes forget it when I'm at my wit's end... but I get it.
It's hard, ya'll. For us AND them.

"When someone living with Fetal Alcohol {effects} remembers something once, people hold it against them, expecting them to remember everyday. This expectation may cause more meltdowns than Chernobyl..."



We work on listening skills a LOT.  Of course, all parents do!
But I mean very intentionally.

There is one game where they sit back to back and I give them instructions on what to draw. I'm not supposed to tell them ahead of time what it's going to be, but that stresses.Cale.out.
So I do.
They still have to follow my (simple) instructions on how to draw it.





For example, a pig.
I'll say, "Draw a big, round head. Draw two eyes. Draw two ears."
They listen to each step, and follow directions.

Cale's-mine-Brynn's

 

"People living with Fetal Alcohol act first, and processes the information later. Our job is to help them process the information with visual aids, prompts and patience before they act....Easier said than done I know but it works :) "

 

If you look closely, you'll notice that Brynn's is not a pig. She DID listen and follow directions- she drew everything I asked her to.  I had already said we were drawing a pig, and I told her each INDIVIDUAL part of the pig to draw. And that's how she drew them... individually. See the eyes? The ears? The curly tail on the bottom? I didn't tell her to connect all of it and her brain didn't tell her either. Because her brain is INJURED.

 

 

"You can't convince people with Fetal Alcohol that their thinking is off...because their thinking is off. Thinking is their disability. Save your energy for interventions not lectures."

^ I gave Cale six site word flashcards and asked him to make a sentence. This is his sentence.
I asked him to read it to me: "Mommy is fun."

"A person living with Fetal Alcohol's brain is like that light bulb in your house with a short in it. Sometimes it works perfectly and shines all day, other days it flickers on and off. Then there are those days when no matter what you do the light is not coming on. "     Added by a parent: "And you can't just feverishly flicker the switch on and off in hopes of making it work, or change the light bulb. You must help them learn to find a candle to light within them when their natural fuse just isn't working. In doing this, they learn hope and strength. Two very important qualities that help them deal with life's struggles."

Yes, it takes extra steps.
It means visual aides. It means a LOT of verbal reminders.
It means using what you've got, where you are, however you have to keep things calm.
It means simplifying...everything. It means providing outlets and "safe" places.
(90% of the time, that means they can be found working under/inside/behind a table/chair/blanket. Or wearing a helmet. Or, most recently, wearing a helmet while under a table.)




^B

^C

 

 

 

 

 

 

"Many individuals with FASD can perform short-term projects well, but have much more difficulty with sustained effort over longer periods of time..That's because their brain has to work twice as hard, so think of them more as sprinters, not long distance runners."

 

 

And all of this is NOT does not just apply to school. It's our LIFE.

See this pic? Nothing special about it. I turned around in the car (passenger seat) and this is what I saw: Anna Gray flinging herself side-to-side (also sensory seeking, common in DS, if you didn't know), Cale repeatedly trying to pull his hat over his ears because he can "hear Daddy driving over cracks in the road" and Brynn with a quilt covering her head.

 

 

I just burst out laughing at our little world.
Most of these may seem like little things- and sometimes they are- but they are ALL DAY, EVERY DAY.
 

^Party at 2am. Again.




^If you see my daughter chewing on this necklace like a termite in a canoe, please know that she is anxious about something and trying to calm herself. Or if she's chewing and jumping/spinning/running, her brain is going in a million different directions and she can't get it to stop.




^Trying to eat (meatless) chili without eating ANY beans. He' been trying for six years. PERSEVERANCE.


But ya'll... think about these two kiddos.
They have all this mumbo jumbo in their head ALL THE TIME and yet they manage to be some incredible little people.

I mean, Brynn made Company!

She has dance class four hours a week.

 

 

 

A year ago, I would have said there is NO WAY she can handle that.  She is doing great. She's six, and not perfect, but I am SO proud of her.

Cale has changed SO much.
It's almost crazy that this is the same kid that left me black and blue two years ago because he couldn't tell me why he was so upset.
Ahem, he has no problem telling me now ;)
He also tells me all the cool things he thinks up in his brain and it's way cooler than anything mine does. His brain is almost as big as his heart.

^ He backed our truck up to the boat trailer almost completely on his own, using Daddy as a booster.

Pretty impressive, I think!

 

 

They are amazing at SO much. That doesn't mean it comes easy to them, or us, or that they can be awesome at the same thing again tomorrow.

 We -all of us- work our tails off. 

We do some days well and we do some days over.

 

"If we change the way we react to someone living with fetal alcohol and their behaviors, they will change the way they react to ours. You can't be a lit match going into a fireworks factory. "

 

I'm gonna just keep saying it.... guys, have a little grace.

For the kid, for the parent, for the teacher.

We have NO idea what each of them deal's with on a daily basis.

 

Be AWARE and educate, educate, educate.

40,000 babies a year are born JUST IN THE US, affected by prenatal alcohol exposure making it the LEADING cause of developmental disabilities.

And it is 100% preventable.

 

 

 

 

All of the quotes were taken from this site, we use it for perspective often: