3 FREE Living with #FASD books for the Holidays – Please share

Better Endings New Beginnings is excited to offer TWO FREE TRANSLATIONS in online books for the holidays to help families and professionals in Ukraine and Russia. Please consider sharing these with family, friends, counselors and agencies as appropriate. If you are connected to persons in the Ukraine or Russian – please send these e-books as gifts from our home through yours.

Living with Fetal Alcohol – Ukrainian and Russian Translations – FREE
Liz Kulp and her family along with Ukraine Works (http://www.ukraineworksltd.org) have donated this award winning book and it translation to the Russian people to better understand how Fetal Alcohol affects the life of a person and their family. (www.betterendings.org)

Purchase Direct from Author
Click book to purchase English direct from author

FREE
RUSSIAN TRANSLATION OF BEST I CAN BE LIVING WITH FASD BY LIZ KULP

http://online.fliphtml5.com/aajh/gcev/

FREE
UKRAINIAN TRANSLATION OF BEST I CAN BE LIVING WITH FASD BY LIZ KULP

http://online.fliphtml5.com/aajh/hxrf/

 

 

A workbook to help persons with concrete understanding navigate grief.
A workbook to help persons with concrete understanding navigate grief. Order print version click photo.

FREE BOOK IN ENGLISH TOO – “BROKEN HEART”  by Jodee Kulp
http://online.fliphtml5.com/aajh/noxx/

We have provided permission to print out these pages free or you may order an actual workbook at:

https://www.createspace.com/4079420

#frugal calm idea to destress with #FASD, #ASD, #TBI to provide #Live Abilities

Don’t forget daylight savings time and the changes it may cause for your loved one.

PuritanPride-Lavendar
Liz has made it easy for you Daylight Savings! $10 off $50 + Free Shipping!^ Code: DAYSAVE. Puritans Pride Brand. Valid 11/2/14.

A long time ago we discovered essential oils to help our daughter and in the process over the past 20 years they have become part of our almost daily emotional first aid kit. In fact, if I carry a purse, our favorite oil travels along with the neuro therapy I have in my heart and hands for Liz. Neuro is a series of special massage techniques we designed together to calm her energy. Over the years we have honed it down and tried our strategies with success for many others. Over the coming weeks we will share this with our readers. Make sure you buy the 100% pure!

It works! For boys who think this stinks – try cedar wood…

LAVENDER SALE
Save 50% – 3 for $19.47 – Only $6.49 each

Plus add the Daylight Savings Offer “DAYSAVE”!

As most families with special needs children and adults we have dedicated our lives and our finances to helping our loved ones. That means we have to find the best prices  with the best products…

Today there is a DAYLIGHT’S SAVINGS SALES “DAYSAVE” we want to share…

We love Puritan’s Pride. AND WE JUST GOT THE CODE!!!!

Daylight Savings! $10 off $50 + Free Shipping!^ Code: DAYSAVE. Puritans Pride Brand. Valid 11/2/14.

 

Excited about G7 #FASD conference in #Sudbury Canada

Liz and I are busy getting ready to travel to Sudbury for the G7 Conference, November 3-6.G7Conference If you are in the area – come and visit us.
We look forward to empowering our audience with new ideas and strategies.

Keynote Thursday, November 6
LiveAbilities: Staying Safe in a Medical Crisis 

Two workshops, Wednesday, November 5
LiveAbilities – Braids to Healthy Interdependence

plus finishing up on the panel, with James Gideon and Tanya Northcott on
Thursday, November 6
This is our journey…. Life with FASD

#FASD Conference Success – Thank You Dr. Jim and #AnnYurcek

Success means a quiet voice and truthful statements
2014 BROCHURE2
FLYER - FASD CONFERENCE-FINAL

Shouting out a special thank you to Dr. Jim Yurcek and his wife Ann Yurcek who stepped up to the plate to make this conference happen when the funding was removed. It was awesome.

  • Loved how everyone in the audience worked together.
  • Loved what Liz and Sam had to say.

 

Hope we impacted people with new ideas and strategies and visions for helping and understanding persons living with the challenges of fetal alcohol spectrum disorders #FASD.

It was a day well served – the road of seeing FASD now has visibility!

Thank you from the Kulp Clan – Let’s do this one again…

 

 

My Parents Need Respite, They Need to GO!

JamesGideon-Horse3Written by James Gideon for his ten-year-old self
James Gideon is currently Program Coordinator: Enhanced Extrajudicial Sanctions Program (Diversion Program), Equine Assisted Life Skills Training, FASD.S.C. that stands for FASD Support Coach, Youth Worker – His insight continues to challenge families and caregivers to help understanding their children living with FASD

visit www.thechancerchronicles.com to learn more about being ten!
Visit http://www.thechancerchronicles.com to learn more about growing up with fasd – the Winokur family offers insight on being ten!

Dear Live Abilities

I am a 10 year old living with two parents who I need a huge break from.

They are constantly telling me I need to do this and do that, all I hear is blah blah blah, really that’s what I hear when I get overwhelmed from all the talking.

I don’t like to go to bed early, I enjoy staying up late and playing video games, when they come into my room and tell me ok time to go to bed now, I freak on them, always invading my space. They talk about me invading their space, do they not get it, they are in my space — my room and my bubble. You see, after the sun goes down and the world gets quieter I can began to think better. The lights are lower and the noise is softer. And I can feel safe in my video game, I am already up a new level. In the morning all the crazy busy starts again and — deep breath — well it is just hard hard hard.

I hear my parents telling other people we have to normalize FASD. What the heck are they talking about? Normalize FASD? Yeah right. I know, I know, normalize it is what they hear from coaches who don’t understand what it is like living in this world. I don’t seem to react like everyone else. But, this is normal for me.

Maybe my parents need to get normal, maybe all of society needs to get normal.

WHAT IS NORMAL?
I go to school and come home and my parents ask me 50 million questions and my head spins. I try to remember the first question they ask me and soon all the words get all mixed up and so do the questions. My mind just needs a rest when I get home and I need something good to eat and maybe some down time or shooting some baskets.

They flip out on me when I don’t do good in school. I hear them swear underneath their breath and then they tell me not to swear.

I think I really need a break from them. After all they gave me this idea about respite. They said they need a break. That’s a good idea. I like that idea! I want respite and I can send my parents off some place so I can get a rest from them. They make my head sore. They talk about me and think I don’t hear them. They repeat things all the time.

I hear you. I hear you. I hear you. I just can answer yet, the words are there and then the other word stomps on them and I just need some time to answer.

When I ask for something, they stare at me like I am stupid. I wonder what is wrong with them. I don’t think they know what they want. They tell me I don’t know what I want. They say I am always melting down. Guess what they seem to be always melting down or they run to the computer and go away in their minds and talk about all kinds of things.

Worse yet, when they get off the computer and are together they scream at each other. They ask each other how come we adopted him? They say well just look his mother is this way and she has done this and that. Well I have not done this and that. I am only ten years old. I am a kid living in a world where everyone talks really fast and everything sounds really big and everything looks busy. I need my space Live Abilities — do you hear me! I have to ask myself, ARE THEY NORMAL? If they are normal I don’t want to be that.

They say we need to make FASD normal for me, but is that the way it is? I don’t know, I need respite. I think I should just run away and then I don’t need to deal with them. They say hurtful things to me. They blame me for ruining their life and how expensive I always am. They have so many negative things to say about me or at me. They talk to others about how bad I am. Do they know that they are also bad to me.

I need respite for them, send them away so I can get a rest.
Somebody help me!

 

Dear James,

This is your friend SavAnna. I have FASD too and I am a trail guide and navigator to kids and teens like you.

I am an FASD Survival Teacher.

FASD is a hard challenge and I am sorry you are having trouble with your parents. I am now an adult and a mom so I can feel your pain. Tell me more…

James: SavAnna – they want me to go to camp and meet new people and have fun with friends – don’t they get how hard that is for me? How hard NEW is? How hard CHANGE is?

It is like they are putting me at the edge of a cliff and pushing me off. Do other kids fly? I think my wings are broken.

I cant go, I have video games to play and I know how to play them. I have worked really really hard to do them well. I have friends here I want to play with. I know them and they know me. I know they won’t bully me. I know they won’t say bad things. They are okay that I am different. I have things to do here at home, they can go. NOT ME!

SavAnna: Oh James, I am giving you a big loving hug and pretend I am sitting right next to you like a kind sister. Our safe place is truly home. You have to realize that your parents are called neuro typical. That means their brains work like many more people than yours or mine. It doesn’t mean you are less, you are just different. When your parents are frustrated and the world is uncooperative they can go and discover downtime and get relief. For us when feeling overwhelmend we don’t really want to be fighting the world out there too!! We have to fight in our heads and bodies everyday to just keep up. Home is safer, stabler, and better to decompress at.

I think we should talk the neuro typicals who have many more resources than we do and many more opportunities into designing a retreat place just for them so they can take time to heal and learn how to come back and love up on us. Do you think someone could get them a grant to do that instead of paying people to try to figure out us?

After all, it will be much easier for them to change each other than for us to become them… even before we were born that opportunity was taken from us…

Love and much hugs, your big sister, SavAnna

45 Ideas for a Fun FREE Time

It’s a rainy day and you have no money and no idea of what you can do… well here are 45 ideas to try something new and throw together a few laughs.

 You’re Bored?

Have a Party-- Non-Alcohol Drink - Smoothie Recipes
Looking for great gear to BUILD FASD AWARENESS – check out our stuff!

Too cold or wet for indoor fun

  1. Bake cookies and share with your favorite people.
  2. Learn to make a new food dish with a friend,
  3. Host an open mic night – brew some fancy coffee – there are great flavors and you can do decaf. Give each person mic time to share – poetry – rap – testimony. Push back the living room furniture – put an aerobics class DVD in the player, find one on Netflix or Exercise TV
  4. Building stuff is fun – have a snow-building contest, a sand-building contest or get some blocks or Legos. It’s even more fun when you’re trying to win something.
  5. Have a board or card game night. Invite friends to bring over their favorite games and teach everyone to play. 

Community events

  1. Try something new – look in your community for free festivals, shows, walks, open houses and museum exhibits.
  2. Visit a farmers market
  3. Visit a local outdoor art fair
  4. Visit a flea market
  5. Visit a museum. Most museums have a day or two out of the week that’s free to everyone – check your city guide to see what’s going on by you.
  6. Check out the library for free workshops, events or classes.
  7. Attend a free concert in your local park

Nice day for outdoor fun

  1. Go to the park and play on the jungle gym, slides and swings.
  2. Go sledding down a nearby hill. No sled? Use a clean plastic garbage can lid, cardboard box or black garbage bag.
  3. Learn about Letter Boxing or Geo Caching
  4. Take a dog for a long walk. If you don’t have a dog, borrow one from a neighbor. Your neighbor (and the dog) will appreciate it.
  5. Go on a hike and stop somewhere pretty to write poetry, take photos with your phone or draw a picture.
  6. Go to the beach, lake or river. Walk the shore, pick up fun things you find, skip rocks in the water. Watch the waves or ripples
  7. Play basketball in your driveway, in the park, school’s playground or anywhere else you can find a hoop—play horse.
  8. Play tennis or volley ball at free public park court in a public park.
  9. Play a classic games, like four square, tag, kick the can, kick ball, red rover.
  10. Ride your bike. Pick your own route.
  11. Ice skate or Ice fish
  12. Ride your bike. Join a Critical Mass bike ride scheduled once a month in 300 cities around the world. Examples below to check out.
  • Duluth, MN(w) The last Friday of each month, 5:30pm at the statue of Leif Erickson.

Cooperative Cleaning and Up-Cycling

  1. Up-cycle an old pairs of jeans you never wear into a tote bag
  2. Get together with friends to share nail polish and unused makeup
  3. Using old magazines – make a collage card or poster for a friend or yourself
  4. Paint an old dresser in fun colors
  5. Work with a friend to clean a closet, room or yard
  6. Go to Pinterest and find a fun upcycle, do it yourself project you would like to try
  7. Share in a not-very fun chore with a family member or friend
  8. Bath a dog or muck a kennel
  9. Rake or weed a garden

TV, computer, smart phones, tablets

  1. Make up a good lie wth Fibbage, like You Don’t Know Jack Party, uses smartphones and tablets as game controllers while linking up with the Fire TV for big-screen multiplayer sessions. In it, up to eight players trick one another by filling in the blanks of trivia statements with lies as they see fit. Each round of play lasts seven questions and includes special categories like “Celebrity Tweets” and “Road Trip.”
  2. Borrow a couple of movies from the library. If you don’t like them – who cares they were FREE.
  3. Trade video games with a friend for a couple of nights or invite some friends over to play video games.
  4. Watch episodes your favorite TV shows from when you were a kid. www.Hulu.com has a ton of shows from the past 20 years, and they’re all free to watch.There’s nothing to download and nothing to pay. Using Hulu couldn’t be easier. Just log on to hulu.com; choose a show or movie that you’d like to watch; click play; and the video will load in Flash Player.
  5. Watch a flip through the stations sporting or competition event. Make it interesting by “betting” on who’s going to win. Whoever’s right gets to pick the next activity.
  6. Play some online games with friends or by yourself at http://www.pogo.com Pogo.com is a free online gamingwebsite that offers over 100 casual games from brands like Hasbro and PopCap Games. It offers a variety of card and board Solitaire, Monopoly, Puzzles, Sports and Scrabble.

Un-shopping adventures

  1. Visit the mall or grocery store with $5.00 and see who can score the best deal or deals with such a little amount of money.
  2. Visit the mall. See who can get the most things for FREE WITHOUT STEALING! (make-up samples, perfume samples, coupons)
  3. Visit a department store and have a free make-up makeover – if you don’t have any money for the make-up you REALLY like – take a selfie photo and a picture of the make up with price to save up for later.
  4. Find a safe place to sit and people watch – mall, public area, park- get.
  5. Host a clothes swap with friends and create new outfits.
  6. Host a make a meal day and split it between friends.

Crazy Chatting About #FASD We’re Listening.

Guest Blogger – James Gideon, FASD counselor and life coach. James uses his deep wisdom to help children and teens in the justice system understand themselves through his horse program. James can be followed at FB on Flying with Broken Wings.

JamesGideonHorse
James is one of our beloved FASD Survival Strategy Teachers

Parents/Caregivers/Professionals and Persons who do not live with FASD inside them:

There has been some crazy chatting happening this week. We are in the midst of SPRING—and that means seasonal change. The whole world that was sleeping in the winter is popping into life and it is getting very loud everywhere. We are seeing, hearing, feeling and smelling a world that is bursting with new energy. People who plodded through the snow are running again. Everything has speeded up with living. Acting out happens when we are way over our heads—in change, in communication, in learning, in living.

Those of us with non-traditional bodies and brains seem to pop into strange behaviors as we make this transition. Together as a team of adults we are working to come up with ideas to help each other and ourselves.

Recently a number of older adults who live with FASD have banded together to help the next generation in love and wisdom. We hope that together as we share ideas and experiences from each other without judgment we can discover new roads and ways to make a difference.

Together we can change opportunities and living for the little human beings growing up today with FASD. Please use the wisdom and life experience of those of us who are giving insight to help the next generation of children, to heal the hearts of the adults and teens moving to adulthood. Please help us feel normal and not like a monster.

Please learn about our brain differences.

We are made differently, we are not less of a human being but we are different human beings. Our world is very different from the world you live in and no matter how hard we try we are only able to walk in your world for short moments and then our FASD world captures us again. It is during that time of capture when we are trying SO SO HARD to stay in YOUR WORLD and be in your world and participate in your world that the chemicals in our body and brain pull us back under the deep, dark water and we drown in a tsunami as we struggle loudly to survive.

Because of the way my brain injury works I can be inappropriate if overwhelmed. As I’ve learned more about the way FASD affects me, I have learned to feel the upcoming signs and I have learned to distance myself and use a healthy self-care program. When we are over stimulated, overstressed and overwhelmed our brains may see a small event as an attack because it becomes joined with many other small events both positive and negative. Our brain tries to protect us by lashing out at whatever seems to be causing the problem to make it go away. Relationships are important to me. I keep trying.— R.J.  Formanek

Many hurtful things have been said about us. Let’s look at this big mountain and work together in love and kindness to help move it.

db2ff-hammaka-hammaka-parachute-silk-hammock-hammock-and-porch-swing_0_299x235
Sometimes we just need a PARACHUTE HAMMOCK to get out of the way of ourselves
  • People with FASD should know how and when to forgive—so let’s figure out a concrete way to do this on both sides.
  • People with FASD should be able to apologize for real with sincerity—let’s lay down our verbal weapons against each other and work together
  • People with FASD have to learn to control behaviors—let’s learn on each side to not engage in these behaviors—let’s discover new ways of communicating our needs in safety.

o   Swearing at people

o   Yelling at people

o   Refusing to cooperate

o   Refuse to take responsibility for actions

o   Being late

o   Missing appointments

o   Destroying property

o   Stealing stuff

o   Make a mess and not cleaning it up


o   Making too many demands

Relationships are reciprocal—You know what folks, WE TRY. There is plenty of work to be done…

My question is:

Are you going to be for us or against us in learning FASD Survival Strategies?

You may not believe it but our behaviors break our hearts too. Our behaviors frustrate us. It really hurts us when we hurt someone close to us—when we say something without thinking or cause physical hurt or break something. We want to control everything.

We see what we do as we are doing it. Our verbal, emotional and physical brakes quit working. It is like trying to stop a train wreck only you are the engineer inside the engine and the front panel has switched off. If we zone out we may have flashbacks of what happened. Or people tell us. Or we see ourselves in InstaGram or another social media site. Ouch! It seems that when things are going too good we sabotage ourselves. We do like our parents. We like our adoptive parents. We know we are hurting you but there are times it’s so difficult to control ourselves when our brains don’t function right.

Many times we feel an apology isn’t going to do any good anymore. We go away. We may not go away physically but emotionally we crawl into a place that is dark and sad and lonely and we stay there. We don’t want to associate with anyone because we have done enough damage. We don’t enjoy hurting others. We want to control those outbursts. But there are times we feel like a monster inside. There are times we may act like a monster. It’s because that’s how we feel.

We are not monsters. Folks who live with a FASD need to be encouraged and empowered to make healthy, good choices and to know that we are okay, that we are not monsters, we are not a burden, we are capable of doing and making our dreams come true. We are capable of purposeful living—of being successful. Of making positive differences in the lives of other people.

Darlin Dee a parent of a child with FASD here…

just popping in to encourage all caregivers to take a step back from the emotions/frustration that you may be feeling while raising kids with FASD. Since meeting James last year our family has forever been changed. Him along with some other adults living with FASD have really inspired me to step back and change how I view parenting.

Society may not agree with how we are approaching our little one but man it works. She is hurting, she has struggles that typical parenting does not work with.

I know that now…and our days are filled with love, laughter and support for who she is. She does have her moments but we know to support her with Love…Love will make each day better. Find it in yourselves to take time to heal your own stuff and triggers…this is a new way of looking at things and it works 100%. Love based parenting—shift the paradigm…you can do it! You have cheerleaders here to help!

Mark (EB) and SavAnna (FASD) sharing relationship insight…

Misunderstanding FASD symptoms and the brain damage caused so much pain in how we related. We both fought to have ourselves understood. The relationship between us in the first few years was failing and we were realizing it was becoming  mentally and physically dangerous to both of us so we went together and met with doctors and counselors to try to find help, they truly did not understand FASD and told us that Savanna would never in her life be capable of having a successful relationship  (that was almost 6 years ago!).  Until I started to truly understand FASD from an external brain perspective I too felt despair and hopelessness as so many people do who care for people with FASD.

  • Reading about it helped.
  • Attending training brought clarity to the mystery of the behaviors
  • The real change occurred from learning about other people’s experiences as well as our own.

It was trial and error.

And there were many, many errors!

And there is . . .

ALWAYS NEW LEARNING.

Just last week I learned to not inadvertently cause her undue stress surrounding an upcoming event by counting the days down to the event and showing over excitement which can so quickly lead to causing a meltdown.

Now after years of in the “trenches hard work” we have finally come to a peaceful place where we both have willingly changed the way we

— relate,

— communicate,

— act and

— respond to each other…

Our lives have changed and the relationship is interdependently successful!

There are so many tremendous people on this site who openly share their knowledge and help so many people across the world … God bless you all.  My sincere message to all the external brains is that if you take the time to learn and understand FASD, not only will your life be enriched by the wonderful person you are caring for, but your life will be so much simpler and easier and mutually, joyfully fulfilling.

I am sorry if I am not what you asked for, but love me please and bring me up knowing what you know, kindness, love, understanding, gentleness, joy, and peace at heart.

Thank you.

James Gideon

The BIG EVENT living with the challenges as a adult with #FASD

rjcat
R.J. Formanek is the founder of Flying with Broken Wings on Facebook which now has over 1000 members flying together.

 

Special thank you to guest blogger
— From R.J. Formanek –

R.J. is one of our beloved FASD Survival Strategy Teachers
And so this is Easter or Passover or Christmas or the BIG CONCERT. . .

We’re down to the home stretch now, only a few more sleeps to the BIG EVENT.

My son goes to spend the holiday with his mom, because as every body knows – nobody NOBODY does Christmas like MOM! 🙂 

2014-04-12 09.28.52
I don’t do decorations or lights or … ask your kids what overwhelm them and find a quiet alternative.

That leaves me and two cats to have fun ourselves.

And we do! They get presents and some special food too! 
  • There are no decorations at my home, no sounds of Christmas choirs or jingle bells.
  • While there are a few paintings and prints in the living room, my own room is bare white walls, save for one small picture of my daughter.
  • I hide the modems because the blinking lights tend to throw me off after a while. And between the computer, the cable box and the telephone we have a whole lot of blinking lights all over the place. So, no need for Christmas lights as far as I’m concerned! LOL!
It sounds bleak to some, but to those of us living with FASD it feels safe and comfortable.

There are times when we just need a break from all the lights and sounds and my home is where I can do this.

2014-04-12 09.52.11
A snuggly blanket – warm and safe – this is the prayer shawl Jodee Kulp wraps herself in. Each stitch was knit with a prayer for her.

Being a safe place for me sometimes means the exact opposite to my apartment though… it’s the place I can let down my guard and show my frustration at the world, or myself in that world. It’s where I giggle like a little kid while wrapped up in a snuggly watching cartoons, or at this time of year It’s A Wonderful Life. It’s the place I can stop and try to figure out the world outside. It’s the place I melt down.

😦 It’s also the place I build myself back up again. 🙂

Through the years I’ve had to learn to become quite a handy man, thanks to this “thing” I’ve fought all my life.

I can mend a door, change a window, patch a hole and paint like there’s no tomorrow.

Sometimes though, I don’t repair these things… I leave them as a reminder of what can come to pass. People see this damage and go “oh that’s terrible” and all that… but what they don’t know is that same damage is forever imprinted on my soul. I’m not proud of that damage, it’s not something I ever wanted to be responsible for… no it is a shame I have to bear. And not forget what can happen IF I allow myself to get into that frame of mind.

Understanding FASD has made me understand just how very important self soothing is to an adult like me.

There is no one else to do it, and I can’t be melting down or shooting off every time some thing does not go to my liking. Having a person I can trust as my external brain helps me understand many things, but some times I am the only one who can prevent or at least lessen these things from happening. And that is just how it should be.

If I want to be independent then I have no choice but to accept and deal with my own actions.

“I am the Captain of my fate; I am the Master of my Soul”. Understanding that it is because of the FASD that I have a hard time regulating myself emotionally has given me the tools to “fight the beast”.

Knowing and understanding has made all the difference.

I’m so much better than I used to be in this area, but sometimes I still kick a door jamb, or suddenly let loose with some loud expletive… but it is getting better and better. I never thought there was any way to fight this, but I am learning that knowledge really IS power. I CAN beat this thing and I will.

Taking care of myself… eating, sleeping and that sort of thing and a good amount of physical exercise also help to no end.

It is reactive anger and I work at stopping the reaction that causes it to spill out into the world. 

No one can see my confusion and pain, nor can they see my frustration.

2014-04-12 09.29.56
Sometimes I just need to GET OUT of the event! To regroup and be able to return at peace.

I get frustrated that I feel like this, and that leads to added frustration because I feel frustrated for feeling frustrated. Make sense? No… but that’s what it’s like… sometimes it’s a loop I get stuck in. Fun, huh?

So, this holiday season don’t forget how all these sensations and emotions can give us need for some quiet time, for a place we can just relax for a bit. I have to hand it to a great friend and her family… they invite me for over to celebrate in friendship and don’t bat an eye if I suddenly have to go outside for a walk, or stand instead of sit, or walk from room to room… or just sit quietly.

I really enjoy being able to share the festive season with them all.
Everyone I hope you all have a Wonderful and Safe Holiday time… no matter your beliefs or values, we could use more of this “Peace on Earth” stuff!

And that is my wish for each and every one of you**********P E A C E**********

Expressing a voice for the voiceless encouraging the building of better baby brains – http://www.betterendings.org

Why “NO” doesn’t work with #FASD

c2063-img_2725Guest Blogger – Liz Kulp
FASD Survival Strategy Teacher,
Award winning author Best I Can Be, Living with Fetal Alcohol and Braided Cord Tough Times In and Out

Don’t use mostly, sometimes, maybe, perhaps—I won’t do that!”
This avoids giving me direction I can use. It keeps my brain on a fuzzy place like standing on a ball.”

  • I do yes and no
  • I do Tuesday at 3:00
  • I do give me ten minutes of quiet time
  • I do it will be finished at 5:00 pm
  • I do true and false.

Don’t tell me what I can’t do
This empties my mind and the connections in my brain struggle to discover replacement thoughts

  • Tell me what I can do.
  • Give me choices
  • Let me come up with choices before you tell me NO – “What else could we do?”

 No takes away my ability to think. It puts my mind into emptiness without opportunity.  Tell me what you need, want, desire and I will do my best to help.

Abstract thinking is like grabbing thoughts, ideas, and explanations, but when you look into your hands there’s nothing there.

You can’t have abstract ideas in your physical possession.

Concrete ideas you can see, touch, hold, show and prove!
“My green minivan has a flat tire” – shows a picture, can be touched and if you look at the tire you can prove it is flat. That is a concrete statement vs “The vehicle won’t go.”

For example:

Abstract Concrete
Justice Police Officer
Fled
Advised
Transportation
Drove away in a car
Said or told
Bus, car, train, canoe
Criminal
Golfer
Idea
Girl who stole my purse
Tiger Woods
John’s idea
  • Be aware that persons with organic brain injury may have trouble filtering out distractions, fighting their impulses and make poor decisions sometimes by obeying “EXACTLY WHAT YOU SAID!
  • Be aware of what you are saying – all the time.
  • Understand that if they are doing something that you have expressly told them not to – go back over your instruction and see if they have translated what you said literally.

When using sensory words – does the person understand the word you may use to describe it?

  1. Taste – bland, biting, bitter, brackish, briny, metallic, minty, nutty, peppery, salty, sour, spicy, sweet, tainted, yeasty – (if you use the word biting will it make sense?)
  2. Touch – cold, hot, warm, tickly, harsh, gritty, grainy, clammy, chilly, tingle, sting, smooth, rough, numb, knobby, harsh, sticky, slithering, jarring – (if you use the word jarring will the person understand?)
  3. Sound – hiss, whisper, whine, screech, snap, swish, splash, creak, crack, gurgle, murmur, hum, cry, giggle, chime, clatter, clink, crackle, buzz, blare, bellow (if you use the word bellow will it get confused with below?)
  4. Sight – flash, flicker, glare, glitter, muddy, spark, foggy, bright, cloudy, glow, shimmer, chalky, dappled, inky.

Idioms are abstract and you can get some wonderful or deadly surprises. An idiom is a word or phrase that is not taken literally, like “bought the farm” has nothing to do with purchasing real estate, but refers to dying.

Abstract Idiom Actual Meaning Concrete Misunderstanding
A chip on your shoulder You think you know a lot What? There are no chips (potato) on my shoulder
You’re high as a kite You are drunk or on drugs or very very happy What? I am standing on the floor.
Out of the blue Something unexpected happened Huh?

Step safely on the stones of concrete language to allow the person to “gain the real meaning of what you are trying to communicate” and not get the wrong idea. 

When your brain works well in concrete language and struggles in abstraction, simple listening becomes overwhelming. Conversations become one-sided. Progress forward ceases. By keeping your conversations in concrete language you allows the person to remained engaged in your conversation.

Avoid the dangerous ground of abstract language with it’s grey areas of misinterpretation and misunderstanding.

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5 Stepping Stones to Navigate Through Concrete Thinking

“I’d like to work with senior citizens,” said my daughter.

Do you think those people will like your hair? I am a realist,” said the professional job coordinator. 
My daughter’s head tilted.
I am a realist. Do you think those people will like your make up?” she continued, not waiting for a reply.
My daughter’s eyes squinted.
“Do you think those people will like your earrings? I am a realist, I am just being a realist,” she said. 
Silence—We were safe, I noted my daughter’s eyes glaze as she moved into her inner world.  My daughter is an adult navigating an abstract world with concrete thinking and an auditory processing disorder. When she asks for my services I am her cognitive translator.  I interpret what has been said in abstraction into concise language. She did not signal me to react, so in this case. I remained silent. 
I wondered, “what she was hearing compared to what I had heard?” I was stunned.
Safe in the car I asked, “What did you think of the job coordinator.” 
My daughter answered promptly, “Who was that? I didn’t get why a Realtor cared about how I looked, Grandma always says she likes my hair and make up. And Grandma’s friend told me to get more piercings and said she’d do it herself if she was my age. That Realtor was weird, she was wrong about people like grandma.”

Step One – Recognize concrete vs abstract thought processing
For those of us who live, laugh, work and love persons with concrete thinking we sometimes “get it” and sometimes we don’t. We are often so busy living our lives that we miss the understanding of the person we are trying to mark trails for success and plant opportunities of learning.

Instructions given by professionals, parents, caregivers, teachers and other people close to the person with concrete thinking must take their thought process and life experiences into into consideration at each step of communication or instruction.

Here’s an example:

“Emotions are like waves, you simply ride them up and ride them down,” said the therapist who repeated her statement three times for understanding, moving her hand up and down like a wave and finally finishing with “You ride it up and down.”
In the car, I encourage playback of what happened in the session and work through additional understanding.
“You know what I don’t get?” my daughter asked.
“What?”
“How come she wanted me to get in a wagon and ride up and down.”
I translated what the therapist was trying to explain and how emotions can be loud or calm, big or small, how the energy we feel in our body can be different at different times. We talked together about examples of loud emotions and calm emotions and when they happen and how they change.

Then we talked about what the waves in an ocean are like – we live in Minnesota – and how they work — even Lake Superior waves are not very ocean like.

Find the love in each stepping stone.

Step Two – Recognize concrete thought processing is a valuable skill and honor it
Concrete words name and describe things in detail. They provide clear direction, and what you say is what you get. My friend, is a manager in manufacturing and he shared how he values the people doing visual inspection of his products versus the robotics and machines they had implemented.

“I would put my functional employees up against my abstract thinking employees, visual computerization and robotics on any given day. My functional teams would beat them hands down in quality, consistency and skill. I have one department I’ve been thinking of changing to the employees who understand what I need and once I tell them what the job is that I need complete—it is exactly what they do.”

A word, picture (sign) or phrase is concrete if:
  1. It provides specific meaning. 
  2. It is specific, particular, real and tangible
  3. It is characterized by or belonging to immediate experience of actual things or events
  4. Is factual

A word, picture (sign) or phrase is abstract if:

  1. There is little or no attempt at written pictorial representation or narrative content
  2. It is unclear, indefinite, imprecise, indistinct, slight, hazy, vacant or obscure
  3. The words or phrases do not provide specific meaning
  4. It is insufficiently factual
  5. It has only intrinsic form

 National Security Example:

“____, return to Homeland Security. _____, return to Homeland Security.”
I looked at my daughter, “What did you do?”
“I don’t know. Maybe I forgot something,” she answered and we trucked back up the concourse to miss our plane and see what we forgot.
“Are you ____?” the uniformed agent asked my daughter.

“Yes, I am,” she answered.
“Were you carrying a lighter?”
“No.”
“Were you carrying a lighter?”
“No.”
“You were carrying a lighter?”
“No, I put it in my sock so I wasn’t carrying it.”

My daughter is beautiful and no one would realize she had a hidden difference. “We are heading to a conference to speak on fetal alcohol spectrum disorders, my daughter has a brain injury. She is answering you honestly.”
I pulled out our book, The Best I Can Be, Living with Fetal Alcohol Syndrome

“Your sign was wrong,” my daughter said.
“What do you mean?” asked the agent
“Your sign said, do not carry lighter, so I put it in my sock so I wouldn’t carry it. You should put a lighter with a circle and line through it. Then I would have thrown it away.”
On our return flight, my daughter noticed that all the signs had been changed in ALL THREE AIRPORTS – Kentucky – Chicago – Minneapolis.

Step Three – Persons with concrete thinking may hide 
He is so witty and funny and expressive! But what if what you thought was funny was actually the way that persons understood what you said. What if the question you asked was also the question that person answered. What if what you asked was a matter of life or death?

Winner 2012 Best USA
Books – Young Adult
Fiction, Mom’s Choice
Gold Fiction – Adults
and Young Adults

Excerpt from The Whitest Wall
Turner pressed record. “Are you Kevin James Abbott?”
“Yes.”
Turner recited the Miranda warning. “Do you understand?”
“Yes.”
“Can you sign this paper that says I have read you your rights?”
“Sure.” Kevin liked signing his name.
“Do you want to talk to me?”
“Yes.” Kevin knew he was innocent. He hated Doc Johnson, but hating someone was no good reason to kill him. He’d tell the truth for a ‘stay out of jail’ pass. He was a good talker and had bamboozled his way out of police situations before. What was that word—no contesto, no commento? Kevin fixated on a small black fly as it walked across the table.
“Kevin, do you know why you’re here?”
“I killed Doc Johnson?”
Turner was surprised the confession came so easily. “Did you have an altercation with him?”
“Huh?”
“Tell me when Doc Johnson made you mad?” Turner sat back and relaxed with his arms behind his head. Kevin’s eyes rolled up to scan from left to right. He was quiet. Turner waited and smiled.

Step 4 – Realize it is brain based and for some people it cannot be altered Sometimes the path and stepping stones we follow can get a bit messy. Sometimes they seem to have random patterns we find hard to understand.

Concrete ideas are usually visible and objective.

Thoughts in concrete thinking are derived from the senses touch, smell, sight, hearing, and taste). Thinking is characterized by actual words, objects, events and the absence of concepts and generalizations. Therefore, problem solving is accomplished in a concrete, systematic fashion based on what is perceived, keeping to the literal meaning of words, as in applying the word dog to a particular animal and not to all dogs.

Most children move from concrete thinking to abstract thinking between the ages of seven and eleven. These children begin to process ideas that involve complex visual or language-based ideas that are not easily associated with concrete ideas.

Abstract ideas are often invisible, complex, and subjective. Abstract words refer to concepts or ideas-things you cannot see, hear, taste, touch, or smell. Examples include; love, success, freedom, good, moral, democracy, and any -ism.

Children entering abstract operations began to understand the meaning of things learned with a desire of trying to explain the how and why. They begin to interpret, summarize, and discuss. As they progress they are able o break down knowledge into parts and show relationships through comparison, experimenting, and categorizing. Eventually the production of something original is brought together from the components of previous knowledge and they are able to make judgements based on established criteria.

A child with organic brain injury may progress into adulthood with concrete thinking. What I have observed with these adults is that they ARE ABLE to compare, categorize, experiment, judge and produce original work, but they do it with tangible information. The ability to have SMART concrete thought is a value in today’s information abstract world. We must learn to understand and value it. One of the FASD Survival Strategy Teachers I consider a friend explains, “My mind walks, it doesn’t jog. If my world gets too loud, I have to find space to quiet my brain.”

Anne Russell from Australia gives an excellent example: “One young woman with FASD was told, ‘Don’t come home after dark,’ so she stayed out on the porch all night.” This is an example of a person with organic brain damage trying to do the right thing but because of the injury to her brain was unable to be sufficiently flexible to see that the instruction meant something different.

Last week my husband had a conference to attend, and after dinner, one of my adults piped up, “Dad saw Superman today.”
“How did he do that?” I asked knowing he is not a great fan and he had not told me anything about it in the morning.
“He drove his car,” answered the man looking at me like my brains had just fallen out of my head.
“Ya, you know – rectangular box with wheels and a steering wheel,” chimed in another. 
I laughed at them poking fun of me.

Later alone, with my husband I asked, “How’d you get to Superman today?”
He answered quickly, “After we had lunch at the conference, they passed out 3D glasses and told us they had a surprise – our classes were over and we got to watch the premier showing before it was available to the public.”

Step 5 – Know the difference and appreciate when you fall in between the cracks
Be aware of what you are saying – all the time.

  1. Understand that if the person is doing something that you have expressly told them not to it may to YOUR CHOICE OF WORDS
  2. Review your instruction and see if the person has translated what you said literally.
  3. Did you use specific language:  people, places, numbers, dates, and details.
  4. Be wary of particularly ambiguous terms.