Getting Burned with #FASD

R.J. Fromanek is the founder of the Facebook Site "Flying with Broken Wings"

Special thank you to guest blogger R.J. Formanek

— Written and shared by R.J. Formanek -
R.J. is one of our beloved FASD Survival Strategy Teachers

Learning how FASD affects each of us individually can make a huge difference in understanding the miscommunication we with this hidden disability often face.  

Because of deficits in our cognition, due to the damage (in this case mainly to the frontal lobes) we often do not understand cause and effect, because to us that is an abstract idea. We tend to not be so good with abstract concepts... and that may be due to a lack of understanding.

Humour, jokes are often lost on us because they involve using the ability to look at things in an abstract, as opposed to a concrete light. And many things we say are taken as jokes because the typical person puts an abstract spin on what we say. This can manifest in some interesting ways.

For example... when I was a kid people said,

"Don't touch fire, you will get burned."

Burned? I had NO IDEA what that was. I had seen paper and wood burn. Would I burst into flames as well? What did it feel like?

What exactly does burn mean anyway? If you have difficulty generalizing you get burned many many times!

And you know what I did?
I stuck my hand in those flames.
And then I knew what burnt was.

Ok, so far, so good.... stay with me here (this is the 'twist' part)

People said "Don't touch the stove, the element is hot and will burn you."

Now, I knew what burn meant... and that hurt. BUT... there were no flames, how could this red, glowing element burn me?

And you know what I did?
Yes, you know.... LOL!
I left a fair amount of my skin on THAT one.

People said "Don't put your hand in boiling water, it will burn you."

Now, having been burned once or twice before... I had this one. No problem. EXCEPT: How could water burn me? It wasn't in flames and it wasn't red hot like the stove? OK, that's got to be a 'joke' or something...

And you KNOW what I did.
Third degree burns down most of my chest on that one.

You see, I THOUGHT I understood...   and in one respect I did. BUT and here's the big reveal:

I was not able to transfer the knowledge I learned in one situation to another.
I HAD to experience the different types of 'burn' to understand.

and so I rolled with the flow of learning one simple word...
... burned in a relationship - well that hurt inside
... sun burned - peeled and blistered
... burn more calories... worked my butt off

and not to forget...
... fire can burn brightly or fiercely - yep really hot
... her eyes burned right through him - felt that one

and I didn't even add the SLANG usages...
... just think about it - I thought I did

I'm just glad I pretty well had it figured out when I found out that acid can burn as well.... ;)

So, I hope that helps explain some of the problems we often have with understanding what we haven't experienced, and transferring knowledge from one situation to another similar, yet different situation.

Obvious enough that generalities work to protect the mind from the great outdoors; is it possible that this was in fact their first purpose?  - Howard Nemerov

The way we use the language can be very confusing and when we have a word one can use as a noun, verb, adjective and adverb it will be easy to get burned!

Liz and Sam share hope for persons with FASD

#FASD the lonely hearts club?

Desi and Jon are social extremists and when they are by themselves, not in a social situation, they are in pain and lonely.They both tend to deal with loneliness by sleeping.

Desi and I just had a chat about this. Why is she lonely all the time and why does she feel so needy?

She said that when she is alone, she feels abandoned, rejected, and just not happy. When she is with people the hole inside her is being filled up.  So she constantly craves friends to talk with, be with, have relationships with.

The sad part of all of this is that her need is so great that she often smothers her friends with demands and soon they are no longer her friend. Thus she ends up feeling more rejection, loneliness and despair.

This is a HUGE problem for my two kids with FASD. 
They seem to plan their whole life around social events.

With support to get up on time, get daily household chores done, and a ride to work, Desi is able to hold down a part time job. 

She works at a thrift store.  

• She is able to manage a register pretty well that tells her how much change to give back, and she LOVES being with people. 
• She can chat all the time during her job with new customers and her co workers. 
• This is rather fun for her and since she has some pretty amazing co-workers, she is very happy there.

Her job fulfills her need to be social. 

I love that for her. She always comes out of there bubbly and chatting with everyone and I feel good when she is happy. However in her personal life, I have watched her go through friends on a frequent basis. Especially boy friends, but also this happens with girlfriends.

There are a few reasons for this. 

• She is socially and emotionally immature for her age.  This started to show up at about the age of 16.  Gradually friends were dropping out of her life.
• She also can get bossy and demanding and who likes to be treated like that for long? She is so needy that she suffocates her friends at times.
• Once she has a friend, that friend is going to be hearing from her a lot. She can just drain them dry.  One wonders why she hasn’t yet met her carbon copy and wouldn’t that solve the problem? I mean someone who might need her as much as she needs them?

Desi and Jon both have little ability to be creative about their lives. 

Organizing and planning are a challenge so  having creative hobbies is difficult for them. Their lives are kind of “empty” outside of their job time. They need their external brain to be there partly just so they are not alone and to manage their empty time.
 
They both sleep most of the day and get up with no purpose or plan for the day, and both need prompting to get important things done, or these tasks won’t be completed. Then comes the free time. They would sit  there with nothing to occupy it, unless they can find a friend, a party, some where social to meet with others.

Another reason I believe they both sleep a lot if there isn’t anything going on socially, is depression. When you are running high on social events all the time, it burns up adrenaline. 

Too much adrenaline burns up serotonin.  

These kids are born stressed and a lot of them deal with mood disorders. Their bodies are always in high alert and using up adrenaline. Adrenaline is a drug of it’s own type. It masks pain.

When something really bad happens in our life such as the sudden death of someone close, a person can go into shock. They won’t feel pain for days. The reason for that is the large amount of adrenaline that is rushed through the body. It shuts down the pain receptors.
So keeping life on a social high also helps our kids shut down the pain receptors, but in reality it also burns up serotonin which can cause the vicious cycle. This kind of keeps them on the wheel of seeking people to fill them up on the inside and take away their pain.

They are often  very bored and both of them will often  just go back to sleep to avoid dealing with that pain. Sleep can be a good thing for them, as it can heal the stress on their body, but too much of it isn’t healthy as it hinders their body’s need to get oxygen and exercise.

As  an “external brain” I find I do need to use gentle suggestions to Desi that maybe she needs to slow down a bit and get some normal sleep. Or maybe tonight needs to be a sit in night just for some down time. When she runs too much, she begins to show it in mood swings.  OR maybe it is the opposite. Maybe now she has slept too much and I need to make her get up and get moving a bit. Then of course I need to help her keep occupied or she is lonely again and wants to go back to bed.

They are adults and we can’t make them do anything, but I find myself trying to help her manage her sleep, resting times, exercise needs and social life too.

My heart does hurt for the loneliness that my kids deal with.  I am here. They know that.
DARN FASD!  Stole my kid’s abilities to occupy themselves.

Lord send good and positive friends into my kid’s lives.

Terry Quinn
kidznlildogz@aol.com

5 Heart Smart Steps for Anger Management

Five Heart Smart Steps for Anger Management

Conflict happens to everyone. 

For persons with hidden differences these conflicts can be invisible until there are so many that the person explodes. One hurt builds upon another hurt and no one sees it happening. Conflict self-care is an individual responsibility, but how can we manage it before it grows out of control especially if we deal with FASD, ADHD, SID, ASD and all those other silly D's.

Some of the things that may cause hidden conflicts others do not see or understand:

• When I am blamed for something I didn't do, it is easy to immediately go on the defense because I am not able to confidently dance verbally around the reality. I don't know what words to use to protect myself so I go off to keep the person away.
• When someone uses a big voice instead of speaking to me with kindness, I can feel the hard or aggressive tone and when I feel that tone I am triggered. It is different coming from a woman or a man. From a man it is deeper and I may be triggered quicker because I believe at that moment they are being mean and I react to protect myself. I go into defense to defend myself and I do it without thinking I simply react. With a woman when the voice is firm or bratty, it doesn't make my heart jump so I am not on automatic snap, but I may still be rude to give myself time to think about what just happened. 
• When plans are quickly changed it is overwhelming and frustrating because I have worked my schedule around the situation, and navigated  to get there which can be very difficult on public transportation or relying on another person. I even have to sometimes reschedule my medication times to make an appointment work, so I can be functional at that appointment. I know people without my differences don't understand the extreme rudeness change is for me and how it affects my life.  

1. When your heart is upside down - BREATHE first!

BREATHE - Something has turned your heart upside down... frustration, confusion, bully behaviors, overwhelming situations or just life in general. Realize emotions you may consider negative like anger and pain are not always bad.  

• BREATHE deeply into you belly until you can hold no more air think 'I can get through this, I can handle this, I can do this.' (One way is to count in 7 short breaths)
• BREATHE out your feelings of hurt or anger until you have no air left in your lungs and you need to take another breath. Repeat. (One way is to blow out 8 - 1 long breath and the 7 short breaths)
• Do this as many times as you need to... Repeat - repeat - repeat

If breathing is not working - 

2. Place your hands together and press hard

PRESS YOUR HANDS TOGETHER HARD (like praying flat hands) AND BREATHE- Continue breathing and press your hands together hard. This is when I say "_______, give me love, peace, joy and understanding." 

• RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding." 

• RAISE YOUR PRESSED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding" or sometimes by this time I can simply be quiet.... 

If I am still overwhelmed - 

3. Grasp your hands together and hang on for the ride!

GRASP YOUR HANDS TOGETHER (like folded praying hands) AND HOLD ON TIGHT NOW  BREATHE- Continue breathing and grasp your hands together hard. This is when I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe.

• RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe.

• RAISE YOUR GRASPED HANDS ABOVE YOUR HEAD, MAKE A BIG CIRCLE OUT AND BREATHE  -  This helps the tightness I feel in my shoulders, arms and neck. I continue to I say "_______, give me love, peace, joy and understanding. Against such things there is no law." Try to relax your hands as you breathe. Usually by this time I am ready for a walk or thinking time. 

Open your new heart - 

4. From your praying or grasped hands open your hands into a new heart - now right side up!

• TAKE A MOMENT FOR YOURSELF - Give yourself a pat on the back for stepping through another hard place. Go for a walk, listen to music that is peaceful, look at something in nature that is beautiful to you (clouds, flowers, trees, animals). 

Take the next step - 

5. Reach out to another person and share your new wisdom.  

• IF YOU LEARNED SOMETHING NEW from this experience of riding your anger safely through a cycle let someone you love know what happened, how you managed it, what you plan to do again and what the person can do to help you navigate this if needed. 

  Do the best that you can.

 Each one of us can reach another in kindness and love. 

Do something for another today.

Special thank you to POWER PEOPLE

Sam, Liz and David - for their counsel in the development of this program. 

Please share in fullness with our connections -  2013 Better Endings New Beginnings

visit http://www.betterendings.org

Need to encourage your place of faith to have a
special needs inclusive ministry? Read more

Happy Independence Day - Possibilities for FASD

Happy Independence Day to a courageous and wonderful daughter may the dreams of your heart and mind be realized.

Liz wrote the poem below in 2008 and in 2012 she truly is independent and come to terms with life with the challenges of Fetal Alcohol Spectrum Disorders

Today is not independence day, but someday it may be true.

The only person I want to be committed, God, is to you.

Alcohol stole my being, before I was even born

Alcohol took my heart and mind, before the early morn

Alcohol stole my first mother, and my father at her side

Alcohol took my young adult self, on a roller coaster ride

I hate what it has taken

Even though it is so true

But we stand united together to fight and not to lose

Thank you God for all you have done!

Liz Kulp
author Braided Cord Tough Times In and Out

I am haunted and inspired by your story about life with brain damage

REVIEW BRAIDED CORD

Bravo Liz Kulp. 

I am haunted and inspired by your story about life with the brain damage caused by your birth mom drinking alcohol while she was pregnant with you. There should be a law requiring every girl/woman of childbearing age to read this book before they even think about having sex and/or drinking alcohol if they are sexually active. So many women don't know they are pregnant when they drink. So many women have addiction issues and think they can drink and not hurt their developing babies. So many doctors are ignorant and tell women it's okay to have a drink or two while they are pregnant; they simply don't get it that there is no safe amount or kind of alcohol that can be consumed by a woman who is pregnant, nor is there a safe time during pregnancy when a woman can drink. Your life is a heartbreaking testimony to that fact that drinking while pregnant is not unlike taking a sledge hammer to the tender head and brain of your developing baby, and your willingness to share your pain, trauma, abuse, addiction, and recovery makes you a hero. You and your precious parents are brave and tireless and I appreciate all that you do to get the word out about this 100% preventable, 0% curable brain damage: FASD.
 

Carey Sipp


Mom's Choice Gold Award - Non Fiction - Life Challenges
TO VISIT LIZ'S WEBSITE www.BraidedCord.net  or www.BetterEndings.org
TO ORDER HER BOOK  https://www.createspace.com/3436934


READ FIVE MORE REVIEWS 
AT ABOUT.COM SPECIAL NEEDS CHILDREN
http://specialchildren.about.com/u/reviews/rca2011/reviewbraidedcord/Braided-Cord-5.htm