Meet Toya – #5 of 90 Real People with #FASD

Day Five of our 90 Day Count Down to September 9 – And Mac has been busy collecting friends and sharing them. We are so appreciative of each of you! We’re loving the action. People are out strutting and jumping and rolling and climbing with their RedShoesRock.

MEET TOYA – Hi, I’m Toya and I was born in Sacramento California on July 4th 1995. I was 1 pound and 10 ounces at birth and I was born to an alcoholic. I am now 20 about to be 21 in just under 3 weeks from now and I have an FASD diagnosis of ARND (alcohol related neuro-developmental disorder). I have a learning disability in math but my IQ is well into the gifted range (above 140).

MY STORY – I was born prematurely, went through many foster homes, experienced abuse and neglect prior to age 5, I also had 3 failed adoptions, and have been in residential treatment centers as well as in juvenile detention centers. Growing up with FASD has indeed been a challenge, but it’s also been a gift because I am a success story. I have a part time job and I attended college for a while but got stressed out but I do plan on going back.

STRENGTHS – I don’t let my disability define me, I am good at many things including singing, writing, art, empathy, and I never judge anyone.

STRUGGLES – FASD, certain social skills, executive function/impulse control, dyscalculia (math disability), PDD-NOS (closer to Aspergers), ADHD, RAD, sensory issues, and certain abstract material is difficult for me and certain things may need to be broken down for me so that I can process them better.

MY WISH – For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else.

WHAT I WANT THE WORLD TO KNOW!

OK, so I have a pet peeve about the way that people refer to FASD (fetal alcohol spectrum disorders). They have said that it’s the most common cause of mental retardation (which is an old term still floating around the universe) or low IQ. The reason that it irritates me is that they say that is because most of us have an IQ that is either average, above average, or even gifted/very high. Some with FASD may indeed have MR/ID but most of us don’t. That is a stereotype that brain damage of all kinds inevitably lead to a low IQ which is extremely inaccurate. Those of us with FASD usually have a learning disability but mental retardation and learning disability are two very different diagnoses. Many individuals with learning disabilities have an IQ above 90 and can even be intellectually gifted. So please, anyone who hears people say that about those of us with FASD, don’t assume that just because we have an LD or brain damage, that we have mental retardation because chances are, we have a normal or above normal IQ. Thanks, Toya.

You don’t know what it is like to be me…

You have no idea what it’s like to be molested and raped before the age of 4.
You don’t know what it’s like to be in foster homes from the age of 4 to 20.
You don’t know the pain of feeling unlovable and unworthy of love.
You have no clue what it’s like to be 5 years old and move from foster home to foster home 6 times in a 7-8 month time frame.
You don’t know what it’s like to experience 3 failed adoptions as a young child.
You don’t understand what it feels like to have 2 parents who were/are completely unavailable to you all of your life.
You don’t know what it’s like to feel like something is missing in your life.

You haven’t been through the extensive childhood trauma that I went through so you’ll never truly understand. I hurt and push away other people because I’ve been hurt sexually, physically, and emotionally. I have put up a wall just to protect myself from further hurt. I’m not bad, I’m just living everyday with the memories of my past and it haunts me daily.

You haven’t lived my life or walked down my path, so don’t judge me.

EXCERPT FROM CDC WEBSITE (Read more at Centers for Disease Control and Prevention)

Types of FASDs

Different terms are used to describe FASDs, depending on the type of symptoms.

  • Fetal Alcohol Syndrome (FAS): FAS represents the most involved end of the FASD spectrum. Fetal death is the most extreme outcome from drinking alcohol during pregnancy. People with FAS might have abnormal facial features, growth problems, and central nervous system (CNS) problems. People with FAS can have problems with learning, memory, attention span, communication, vision, or hearing. They might have a mix of these problems. People with FAS often have a hard time in school and trouble getting along with others.
  • Alcohol-Related Neurodevelopmental Disorder (ARND): People with ARND might have intellectual disabilities and problems with behavior and learning. They might do poorly in school and have difficulties with math, memory, attention, judgment, and poor impulse control.
  • Alcohol-Related Birth Defects (ARBD): People with ARBD might have problems with the heart, kidneys, or bones or with hearing. They might have a mix of these.
The term fetal alcohol effects (FAE) was previously used to describe intellectual disabilities and problems with behavior and learning in a person whose mother drank alcohol during pregnancy. In 1996, the Institute of Medicine (IOM) replaced FAE with the terms alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD).

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Is it Time for the Creation of a #FASD – Based Legal Training Certification Program?

64274-thewhitestwall1Individuals with suspected or confirmed FASD commonly experience a wide-range of impairments that can significantly impair their ability to competently proceed through the complex criminal trial process.

To illustrate this point further, some individuals with FASD may be more inclined to confabulate, be suggestible under interrogative pressures and questioning, and provide inaccurate information sometimes leading to the possibility of wrongful conviction. As such, it is strongly suggested that all legal professionals receive continuing education on topics related to FASD.

To go a step further, the creation of a specialized FASD-based legal training certification program may be warranted. As part of a proposed FASD-based legal training certification program, the following subtopics should be considered:

FASD: An Introduction
FASD and Competency to Stand Trial
FASD and Confabulation
FASD and Executive Functioning Impairments
FASD and Sexually Inappropriate Behaviors
FASD and Social Skill Deficits
FASD and Suggestibility
FASD and the Juvenile Justice System
FASD in Correctional Settings
FASD: Case Law
FASD: Communication and Intervention Approaches
FASD: Ethical and Legal Dilemmas
FASD: Forensic Screening Practices
FASD: Offender Reentry and Community Supervision
FASD: Sentencing Considerations
FASD: Vulnerability and Victimization

-Jerrod Brown

The Whitest Wall by Jodee Kulp takes readers into the world of three individuals living in a regular community and demonstrates how this disability affects day to day functioning most people tilt their heads at but don’t understand. Winner of Best Young Adult USA Fiction (2012) Winner Mom’s Choice Gold Adult Fiction and Young Adult Fiction.

FREE Valentine’s Day Challenge – 200 sobriety pledges to prevent #FASD at #redshoesrock

Entering the campaign is FREE
The cost to society and the life of one person is not.

SAMPLE PINTEREST BELOW

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  1. Join RedShoesRock and take a pledge for sobriety during pregnancy.
  2. Get featured at #RedShoesRock for taking a sobriety stand with us.
  3. Share on Facebook-Instagram-Pinterest-Twitter

All the pieces you need are here:

Just add your photo and ultrasound

Or we can create it for you – email jodeekulp@gmail.com with SUBJECT: Sobriety Pledge

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I was diagnosed as an adult with #FASD #fetalalcohol is real! written by R.J. Formanek #redshoesrock

Special thank you to guest blogger — R.J. Formanek –
R.J. is one of our beloved FASD Survival Strategy Teachers and FASD Trail Guides — He is founder of FB private group for adults with FASD “Flying with Broken Wings”

Onrjcat being diagnosed with FASD as an adult.

The day an official diagnosis is given a number of changes happen to a person living with FASD. There is of course, the emotional impact of actually having something on paper that indicates what is going on inside of your body and your brain, something that, up to this point has been invisible for the most part.

Oh, sure there are the ‘small’ physical traits that come with FASD (…”It’s no big deal… everyone can’t be good at everything!”) but to the outside world we don’t look all that different.

So you deal with the emotions, one step at a time.
It can take a while to get this part figured out, but that’s OK too.

So, now you have a name for this thing, this thing that is a part of you. This thing…it’s not something that grew in you, or was added to you…
it’s what DIDN’T grow in you...
it’s not just a part of you…
It IS you!

That is what is hard to accept for some people.

FASD affects every single aspect of our lives, from dusk to dawn, dawn to dusk again… 24/7…

Even HOW we see the world can be affected by FASD.

  • We experience the world differently.
  • We feel the world differently
  • Very often we interact with the world differently.

Many of us, even before being officially diagnosed have always felt and understood that there was a difference between you and I… even if I didn’t know what it was.

But now there is a name for this: FASD.

c88a3-18167423-9052034So, you start to notice the differences, now that you (many for the first time in their lives) KNOW what the differences are. For me, it was a point where I could say “Wow, so that is how neurotypical ( I HATE “normal”) people see/do this? I’ve never been able to do that, in my brain …. etc” because for me the conversation about the differences is important.

It’s important for me to understand what makes me different, not just how I am different… but how understanding the difference can make it possible to bridge the gap between your understanding of this world and mine.

So, I am on a journey to understand how you see the world, because I KNOW how I see mine… so I share what I see, you share what you see and between us we both develop a deeper understanding of being human.

Or, rather… that’s the plan, and as we all well know, even the best plans can turn out wrong. Even with the best of intentions.

The difference between having a diagnosis or not is kind of like the difference between needing and having prescription glasses. (This is very simplified, not saying it’s the same thing. )

With the proper diagnosis … I can ‘see’ clearly now.
And if you wear prescription eyeglasses you KNOW what a difference putting them on can make. Your whole world seems to change now that you can SEE what you could never see before.

And it stands to reason that you would be excited because now you have a deeper understanding of the world going around outside your head. So when a person who never had glasses suddenly has them, it stands to reason that they would ‘drink in’ as much of the world as possible, and be thrilled and excited about what they can now see. And perhaps you want to share this new experience with those closest. I mean, it’s almost like a whole new world, in some ways.

It’s not too long before you start hearing back, from those closest to you comments along the lines of “It’s not all about FASD, you know.” and “Ok so you know what it is, now get over it.” and things like that.

I realize it’s often because we can go overboard with our excitement at this new found realization and need to explore all aspects of how we understand this, and our place in the world.

Really – and this is VERY IMPORTANT –

We need to find our own place, as people living with FASD. As human beings.

You see, for me it IS all about the FASD that has changed my brain and my body from the moment it was being formed in the womb. In reality, even without a name… I have known nothing else. Every aspect of my life has been touched by this, from how I think to how I feel and experience things to how I see, taste, smell and even how I get around in this world. But I never knew why.

Living with FASD can often be like standing in a dark room and being hit (not unlike a pinata) from different directions and never knowing where it was going to come from, or why.

Small wonder we are often so reactive.

So, when a person (older than a child) gets a diagnosis and is able to put a name to this thing it is life changing in so many ways. Please, I am just asking that people in this position be given time and space to find out where they fit in, in their own time, in their own way. And it may take longer for us, many times, most times it does – when dealing with the neurotypicals.

People with FASD are often not making excuses for anything, they are learning! And we often learn by speaking aloud with and through life experience.

redshoesheart-FASDFaith2 2So, the next time a newly diagnosed person starts ‘going on and on’ again about how ‘it’s about the FASD’ please PLEASE understand…

It’s all just a part of the learning process.

-Peace out…. Miigwetch…. Thank you.

R.J. Formanek, Founder and Leader at Flying with Broken Wings

Broken Hearts #FASD and Grief

rjcatSpecial thank you to guest blogger — From R.J. Formanek – R.J. is one of our beloved FASD Survival Strategy Teachers

When dealing with FASD it is important to recognize that everyone is at some point, confronted with grief. And with the growing number of grandparents taking over raising children I feel it is something we need to confront, understand, and accept.

Let’s take a look at who grieves, and why.

Image
The process of grieving through FASD will last a lifetime. It is a daily process we all can walk together. It is not necessarily a sad daily process though. _ CLICK PHOTO FOR FREE SURPRISE!!!

The Child – The child living with FASD grieves for his own lost potential at times, but very often the child grieves each and every time he fails and lets down those around him. He wants to do well, he tries to do well… but when he fails often it isn’t just A failure, it’s ANOTHER failure.
This leads to guilt, shame, and self blaming… that’s ALL grief. The child is grieving. The Parent – The parent of a child with FASD is often battling feelings of guilt and shame as well, whether that is their biological child or not. The reasons for the bio mom may seem evident, but the adopted mother or caregiver also join her in a shared grief of sorts. Each of them wants the best for the child, and each time the child fails at something, or is hurt the parent feels not only that pain, but the guilt of not being able to stop it.
Not being able to help when you want to causes feelings of shame and guilt. The parents are grieving. Grandparents – The grandparents are often saddled with guilt themselves, and this often goes unnoticed by those who don’t really understand.
There is an added dynamic here, the grandparents are naturally grieving for the child, the same as any other parent. But they are also often grieving for their own child as well, the parent of the child they are now raising. Many people do not understand this double level of guilt and shame and how it impacts so many people. Like any parent, when their child fails they feel it, and doubly when raising an FASD affected grandchild. The grandparents as well are grieving.

When we deal with people in the FASD world it is important to recognize this, and rather than ignore it we should honor what these families are going through every single day.

A workbook to help persons with concrete understanding navigate grief.
A workbook to help persons with concrete understanding navigate grief.

http://online.fliphtml5.com/aajh/noxx/
FREE sample pages from Broken Heart – a concrete understanding workbook to help adults, late elementary and teens deal with grief.

This is inter-generational grief. There is no ‘cure’, but there is acceptance and understanding.
 Everyone is at a different point in this journey with grief, and we all must deal with it at some point.

It is good to help one another along this hard part of the journey; we need to remember we are all in this together.

Thank You.
R.J. Formanek, FASD Survival Strategy Teacher

What is FASD?

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

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…

 

 

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