Friday, April 4, 2014

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?
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!

8 Reasons for #FASD Meltdowns

Savanna Pietrantonio: "Seeking inside keys to knowledge to prevent abuse from parents, professionals and caregivers to persons with FASD"
Internal Understanding of FASD Nuclear Reaction Meltdowns
Guest Blog by Savanna Pietrantonio
Savanna is one of our beloved FASD Survival Strategy Teachers
In an effort to reframe my understanding of meltdowns I’ve had to look deeper into the meaningful gifts of the meltdown and to change my fear and shame into acceptance that they are always going to be my body’s unique way of communicating with me.
I can go about my life for weeks accomplishing, learning, overcoming and shutting off or hiding the FASD part of me. But I feel everything intensely and emotional and physical distress is a daily part of living with the disability. In my attempt to hide my disability, act normally and bury my feelings I forget that this is not being true to my disability or myself. And my body lets me know.   Usually through a meltdown of epic nuclear reaction proportions!
I have to learn to respect the meltdown as a symptom of brain damage. I am not being willful, rebellious, purposely destructive or hateful. My brain is telling me that something is wrong and I need to stop everything and ask for help to both get through daily life and to regulate my emotions.
I have discovered eight situations, which cause stress hormones to flood my system, and unfortunately my brain is not equipped to cope with the overload I am asking it to handle. Sometimes I can handle one or more, but as they add together as life often will, there may be no stopping the ensuing meltdown.
Find your own keys that trigger our meltdowns. Understand them and then reach out to a caring support to walk through your next day safely.
Eight meltdown situations
  • Social situations where I have to “be on” for extended periods
  • A change in a set schedule or a plan I am expecting
  • Fast paced days where I am thinking and processing constantly
  • Or the opposite-days when I am wandering “lost”
  • Anticipation of an event even if it’s a positive one
  • After the event, the letdown and “what’s next?” feeling
  • Something new being introduced into my life- a skill or an object
  • An expectation that I fear I cannot meet
Neurotypical people can manage inherently as the brain balances their self-regulating neocortex with their limbic emotion regulating system—‘wise mind’ and ‘emotion mind’. My brain because of prenatal alcohol damage can’t do that. Messages between these two parts of the brain get stuck like tangled Christmas lights and I am triggered into an emotional spiral down the slippery slope to meltdown.
To the best of my ability I can tell you that the warning signs of a meltdown before or after any emotional high or low are there. Both my external brain and I must be on the lookout and aware of them. If the warnings are missed the overload becomes unmanageable. These signs present themselves ahead of the event or days to a week afterwards.
Compassion and understanding provisions us to walk into our complex moment and process safely.
Compassion and understanding provisions us to walk into our complex moment and process safely.
17 clues of an ensuing meltdown:
    • Restless, interrupted sleep, night terrors (others have vivid dreams)
    • My heart feels like it is racing and an uneasy sense of dread or urgency
    • Boredom (really not knowing what to do next-directionless)
    • Indecisiveness
    • My surroundings become cluttered (suddenly I can’t pick up after myself)
    • The tired but wired feeling
    • Inability to focus on one thing but the impulse to multitask to the extreme
    • Defensiveness and extreme sensitivity
    • Acting withdrawn and feeling alone and isolated or isolating
    • Itchy skin and breakouts
    • Fidgety movements like uncontrolled scratching (others may pick or bite a part of hand or area of body - bottom lip)
    • Easily frustrated to the extreme (slamming doors or verbal aggression)
    • Obsessions over unrelated things and agitation with them
    • A profound sense of sadness or unexplainable loss
    • The feeling my brain is full and slow, like when you overeat and your stomach feels uncomfortably full
    • Spending money carelessly and in excess
Before a crisis can occur its critical to stop the spiral by having a compassionate, understanding, non judgmental external brain who has learned not to take your behaviors personally, step in and guide my thinking, give me a perception check or just show care and not let me disconnect. This is not easy as my behaviors are shouting for help while pushing people away at the same time.
I may say something very hurtful when my external brain says, “What can I do to help you?”
“You can die!” I shout because I don’t know what he can do and my brain is no longer connecting to the part of me that can share thinking and feeling.
But there really are things he can do to help me and they really do bring down the energy and place my life back into a state of regulation.
  • Hug me and say I understand. "This is because…" and name it for me
  • Hold me while I cry and listen while I try to get my feelings out.  This may be for more than one day as perserveration is at its most intrusive
  • Help me pick up the scattered brain puzzle pieces and put them into order.
  • My external brain maneuvers my day, stepping in and canceling appointments or doing a task for me so that I can include self-care and put downtime into that moment.
  • Provide direction—one direction only please.
  • Break down my day or task into single doable steps.
  • Becoming compassionate and nonjudgmental.
  • Or I need to be told to stop all my activity and go rest.
And provide time for me to complete self-care:
  • Sometimes I need a complete escape and to have a fun, new adventure — this builds neuroplasticity.
  • I  focus on the foods that build a healthy brain-walnuts, salmon and dark chocolate—the magic trifecta for calming. Drink lots of water-mild hydration causes tiredness and fatigue.  And if we’re not talking nutrition- banana bread, carrot cake, mac & cheese, spaghetti. The things that comforted me in childhood.  Baking these things can be surprisingly sensory and calming.
  • Sometimes I need to get to a yoga class to reconnect mind, body and spirit or I need an aggressive cardio workout that burns off  the adrenaline and cortisol.
I need an intervention so that I can concentrate on the work of really surrendering to my emotions appropriately, processing whatever it was that happened, talking out my feelings and fears, feeling compassion for myself and coming to a letting go of it. It is exactly like the work of the grief process. If I skip this step, the symptoms become very aggressive and I am propelled into full fight or flight reaction and I explode with emotion and nothing and nobody is safe from the destruction or self-loathing I feel. This is where I can hurt myself, others and possessions. (Note: some people shut down and freeze.)
Handling a meltdown with love
While my external brain or myself can’t always read my bodies clues, I have learned to meltdown more appropriately as I begin to trust the process.
We have set some guidelines:
  • I can’t run away, especially by driving, but staying in trust and working through the intense situation and he can’t leave me at that moment or I am unsafe.
  • No arguing when glass things are within throwing reach – find a safe open place to work through the issue and I have a sensory or squishy toy in my hands instead.
  • No swearing (this is so hard when I don’t have words).
  • A pact I made with God and myself is that I will not engage in self harm or use substances. Ever!
  • I am not to strike out in anger at him.
  • I am not to say hurtful, blaming things to him about the past.
  • We have personal space boundaries and if losing it is imminent my external brain cannot—imperatively—cannot react with anger and punishment or aggression and he must not come into my personal space.­­
Sometimes though unfortunately he has to just hold me down and use extended breathing techniques and calmly stroke my hair and tell me I am loving and loved, all is well and I am safe in a soothing voice over and over again while I kick and scream and cry until I am exhausted and its all gone and I’ve let go of my fear, urgency and panic.
Triage after the storm
Afterwards the storm really is over and I can be helped into a calm environment where he can prepare a bath (running water is soothing) with dim lighting, zen music and calming lavender or other essential oil, while I drink a magnesium supplement or I need to be soothed to sleep with weighted blankets and soothing guided meditations playing while he rubs my back or uses tapping on me.
It is possible to get to the place on the other side of the meltdown to where you can look at it and see where intervention might have stopped the spiral and what might we do differently for the next time. And reinforce that what my body was telling me is that I need to heed its signals. By understanding and reflecting back I can empower myself when I list these and review them.
The gifts of the cathartic meltdown are the stillness afterward that allows for more clarity   It allows me to see what I need to let go of and what I need to clear space for. It reminds me that I can empower myself by respecting my FASD and that I have to act authentically and within my own trueness not separate from it but within in.
I no longer need to feel shame, as I know God made me exactly how He wanted me to be with unique built in ways of communicating my needs. I’ve come to embrace and be comfortable in the discomfort knowing that every emotion felt will pass if accepted and felt with compassion.
I can return to the path of “Buddha-nature that is found within suffering and our relationship to it, not by escaping it.” 1 The taking care of self becomes easier and better the more often you do it and the more your heart and soul become aligned. After all, the Spectrum is halfway to spectacular.2
1 Kiera Van Gelder
2 Koren Zailckas

Tuesday, December 10, 2013

Holiday Tips for Children with Fetal Alcohol

Tool Tips from The Trenches
Holiday Tips by Liz Kulp  

I prefer my life stable... every day I have a plan I can maintain. It keeps me on track. When the world moves so fast around me it is important that I take care of myself.

1. Make appointments on the same day and the same time. Taking a break from an appointment may be a break for you, but for me it messes up my consistency.

2. Shop during quiet times when the lines are the shortest. For me this is late afternoon when I have eaten and am rested. When many people are still at work and before they "stop" at the store to get supper food. I still hate standing in line. I get anxious. I impulse buy. If it is going to be busy - I take someone along to stand in line while I go to the bathroom and regroup.

3. Be respectful of my understanding "I don't do sarcasm" Words can hurt. When I have been hurt enough times I lash out. The problem is I don't always know when I don't understand. Most times I understand "EXACTLY" what you said - just not what you meant.

4. Even as an adult I have sensory issues. Fluorescent lights still make my world move around me and give me headaches. It is hard for me to sit for long periods of time without getting up. I still need to move often to remain calm.

5. Wrap my gifts simply. All the tape and ribbons frustrate me and by the time I have opened the gift - I am less appreciative. Seriously gift bags or a filled stocking is great!

6. Provide some of my comfort foods. There are certain things I like to eat and though I am willing to try most things my teeth and mouth still do not do carrots, celery or nuts. For me it's the crunch I can't munch. The texture I can't do. The temperature of the food also can be irritating. I know it is a sensory thing and I have tried to overcome it, but those two things still remain. Let me substitute some of my choices - I try to pick two new - and then stay with my tried and true.

7. Let me use a flat bowl instead of a fancy dinner plate. I will not be embarrassed because I am using a bowl, but I will feel bad if I spill food on your fancy tablecloth. My coordination is not always on task and it is easier for me to pick up my food. Give me the option of plastic glasses without stemware. Understand that if I leave the table during the meal - I may be getting overwhelmed.

8. Know that it takes me longer to understand new events, new places and new people. When all of these things happen at the same time if can be over-stimulating.

9. Don't speak down to me. Use normal language and stick to the facts. I love people. I love to laugh and I am a good friend to others. Take time to get to know who I really am - not by appearances or mistaken actions.

10. Have a Happy Holiday - find something to take care of you. We need resource people who are calm, friendly and honest in a kind way with us. Have a good year - Liz.

Click book to purchase - Thanks, Liz!
Excerpt from BRAIDED CORD - This could be a good present for someone you love (Liz)




Together we grew... we changed... we learned.
(Excerpt page 19)
"People underestimate me. They believe I cannot do things and what they don't get is when I believe, I can do whatever I need to. It is a matter of choice and focus. It is a matter of feeling safe and capable. Oh yeah, and hard, hard work."

We hope our disastrous journey-which has ended in joy -fills your family or practice with ideas to help others with FASDs. - Jodee

The Kulp Family congratulates our daughter, Liz, on her
independence and over FOUR FULL years of sobriety.
Braided Cord was compiled from her 8 years of journals.  
Visit Liz's Website at 

Saturday, November 9, 2013

16 Places to Replace Lost Important Papers #FASD

Need a helping hand to replace missing papers?

Floods... avalanches... storms... accidents... or ... dog help?

What does it mean to replace one simple social security card for a job interview?

Two weeks ago we were able to find out - a one hour very cold, damp and windy line outside the back door of social security office the line eventually was 150 feet long... a veteran amputee too cold to wait and people at the front of the line too unwilling to trade places... then through TSA clearance including wanding... one restroom with a waiting line... then 80 minute wait on metal seats before we saw a very sympathetic person who apologized for the new centralized processing. We walked out with the paper needed for employment and the card arrived in 10 days.

For those of us who love persons with hidden differences - replacing paperwork may just begin to take us a lot more time and inconvenience. Please DRESS warm, bring your umbrella, and pack a snack for those with blood sugar issues.

A special thank you to FEMA(Release Number: NR-084). For those of us who work with persons who can easily misplace, have stolen or lose paperwork - including the DOG ATE IT - this list is really helpful and timely.

The following is a partial list of ways to get duplicates of destroyed or missing documents:
  1. Birth and Death Certificates – Birth and death certificates can be replaced by visiting your county vital records office or on line
  2. Marriage Certificates – The online link for replacement of marriage certificates is
  3. Marriage Dissolutions (divorces) – The online link for divorce decree replacements is
  4. Adoption Decrees – The State District Courts link for adoption records - if the adoption was finalized in that state - is
  5. Immigration Documents – Contact your county office or the site below for citizenship, immigration, permanent resident card (green card), employment authorization, re-entry permit and more.
  6. Driver Licenses – Visit any state driver license office with acceptable identification and proof of address. Fee required.
  7. Vehicle Registration, License Tab or Title – Contact your county motor vehicle office. You will need proof of insurance and state vehicle emissions. Fees administered by county.
  8. Passport – Complete form DS-64 from
  9. Military Records – Request Standard Form 180 (SF-180) from any office of the Veterans Administration, American Legion, VFW or Red Cross, or download from
  10. Mortgage Papers – Contact your lending institution
  11. Property Deeds – Contact the recorder’s office in the county where the property is located
  12. Insurance Policies – Contact the insurance company for replacement papers
  13. Social Security Card – Go to a Social Security Administration office. You also can request a copy of your Social Security statement online
  14. Transcript of Your Tax Return – Call nearest Treasury Department office, IRS office or 800-829-3646; request form 4506. To find your local IRS office, go to
  15. Savings Bonds/Notes – Complete Form PDF 1048 (Claim for Lost, Stolen or Destroyed U.S. Savings Bonds); available by calling 304-480-6112 or at
  16. Credit Cards – American Express, 800-528-4800; Discover, 800-347-2683; MasterCard, 800-622-7747; Visa, 800-847-2911

Saturday, October 26, 2013

3 Quick Tips to help Persons with #FASD

3 Quick tips from Hunter
  1. Something “NEW” used to blow me away. When I am learning a new thing, I feel like a vulnerable little kid who got stomped on by a bully. Change used to make my mind spin out because I do not have any of the next pieces to connect the puzzle. I live in NOW time and sometimes NEXT time, but not later, maybe or other non-concrete times. I will always have to be retaught and learning something new takes repetitive training in many areas without different things happening around me.
  2. Please don’t overwhelm me. My brain walks, it doesn’t do jogging.I can think, I can figure things out and I can do many things people never expected me to do.
  3. Believe me I have years of being the person who was bullied practice.So, before, to protect myself, I used to be verbally aggressive, scream and swear and shred the person apart. The bad part was that even though I had a reason to have that feeling, I felt dirty and my words after they left my mouth stuck on the other person like the dirty words a bully had stuck on me. It was a very bad circle and it didn't make anyone do better or create positive or kind energy. When I communicate with my eyes and don't open my mouth with feelings I should not or am not ready to share, without saying anything, I wait, I watch and I show them I have belief in their ability to finally get it and understand me.

Are you looking for support for a bullying situation in your school or community. Hunter Sargent reaches out to help young people understand the viewpoints of each site and come to a place of caring instead of tearing!

Email Hunter to learn about his classroom presentations 

Support Hunter's work by purchasing his new CD - all proceeds go directly to his Bully Prevention Project. 

Wednesday, October 2, 2013

Adult with Fetal Alcohol is 1 of 5 Finalists - Go Ken Moore

Live Abilities Change Agent Ken Moore 
Is Stepping Out!

Ken wanted me to share his picture and thank everyone for voting and promoting his new book "Makin' It"

"I need your votes!" says Ken - visit to vote for him!
"Please share this blog and get the word out to your friends and family help me win."

My dream is to eventually create a gallery/coffee shop in a natural environment for persons with challenges to share the beautiful work they create.

Ken Moore was selected as a finalist in National Disability Institute's 3nd Annual "My American Dream - Voices of Americans with Disabilities" Video Contest.

If you like Ken's video and want him to win the Grand Prize of $1,000, a digital tablet of his choice, and sessions with a mentor to help his dream come true, visit to vote for him!

Ken's newly released "Makin it" is available for purchase. Mr. Moore is available for speaking at conferences, community events and schools to promote healthy living and opportunity for persons with life challenges.

Live Abilities creates micro business opportunities for persons facing life challenges due to prenatal alcohol exposure.