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

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.
http://kunaki.com/Sales.asp?PID=PX00ZBX1AF

CHANGE AGENT – ADVOCATE –
MEDIATOR FOR THE BULLIED

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 nativewarrior94@hotmail.com 

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

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 http://dream.realeconomicimpact.org/ 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 http://dream.realeconomicimpact.org/ 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.

Adoption “Where The Systems Have Failed Both Children and Families”

Adoption in the media again.

Adoption Horror Stories and the Rehoming Stories.

By Ann Yurcek 

Republished with permission
First published Oct 1, 2013

The Child Exchange.. America’s Underground Market for Adopted Children

This time with a big way… Rehoming. Adoptive parents who became so desperate that they resorted to moving their children to another home without going through proper channels.

First I will not condone any of the actions of the parents who put their adoptive children in jeopardy, but I can understand just how desperate they could be.

This blog post is going to be complex, but it is a complex problem that causes parents to give up on their children. I hope this helps to put another spin on it but with research to support my arguments.
Not media hype.

I saw glimpses of this as it was happening over the years and stayed away from any of the discussions and discussion boards on the subject.  A couple of times on other groups the subject came up and I talked about finding the help through the proper channels. Starting with the Mental Health, Adoption Support, their insurance and Medicaid and tried to help some parents find scarce help.

Back in 2000 I wrote a letter in the middle of the night. My thoughts about having to tell my daughter that she was going to have to go back to vary system she came from to find the mental health services she so desperately needed.  I searched and searched and found no hope or help for her.  I tried every door and found that the system was not set up to help parents who found themselves in our situation.

I found the little known secret of failed adoptions.
Adoption Disruption and Dissolution from the Child Welfare Gateway 

Some of those circumstances from lack of knowledge about what it takes and think love is enough. Sometimes it is because of often not disclosed information. Most often it is the lack of proper supports. For those who find themselves with children with severe complex needs, it is a lonely world.I know that in our own circumstances, we were not allowed to see any of the records and they did not disclose that our children were not general level of care kids. We were promised that none of the group of kids had any needs that would put other children in jeopardy as we had our own children and a medically fragile child to think about.  But we found ourselves with four of them who were in therapeutic foster care and the three seventeen page psychologicals on the kids were never shown us that they were much more needy than we were told. Never-the-less we did not give up even if had been fraud. We had made a promise.

Even more on the tragedy of custody relinquishment to garner Mental Health Services.

Custody Relinquishment from the Bazelon Center for Mental Health Law
Even biological families were forced to put their mentally ill children into the care systems to garner services. But Adoptive Families had to do it to. To return them to the systems to get services suitable to condition and often times residential treatment if one could find one.Those reports highlighted what I had learned. That systems are not equipped to handle our most complex children and families find themselves struggling to find competent help  that is hard to come by.  One has to exhaust all services and then there are few options. Hospitalizations and residential treatment are hard to come by and often will not except our seriously disturbed children.I fought hard and did not give up custody and learned to fight for my daughter and her right to family. But most families will not be as lucky as I was.

Families who have adopted from the foster care system and the worlds child caring institutions. We have no safety net when we find ourselves with children too severe to attach or too damaged to remain in the home safely.  We are vilified for not loving them enough, not caring enough, for throwing away a child. The more of these stories, the harder it is for parents to reach out for help as we are judged, juried, convicted for not loving our children enough or doing enough to help them heal from the ghosts of their pasts.  But it is much more complex than that.

We need a support system all the way from better training  and support from the adoption agencies, health and mental health care systems, child welfare, schools and communities supports.

We adoptive parents who take on these children, sometimes unknowingly are Parenting Complex Children.

Complex…

Some once told me that they are Genetically loaded (they inherit the parents genetic predisposition). There is actually a study going on to see if prenatal alcohol exposure changes genetic structures.

Many will be prenatally exposed. A parents substance abuse issues often put these children into the care of the states and countries. A new study confirms what we parents have known for awhile.
Fetal Alcohol Common in Adopted and Foster Kids   
Neurobehavioral disorder associated with prenatal alcohol exposure. They look normal but can’t do normal and normal parenting strategies do not work.

Children who face poverty, neglect and abuse can have neurocognitive issues. Their brains changed by their earlier experiences.
Neurocognitive Impacts for Children of Poverty and Neglect from the American Psychological Association.

Most will have at least some mental health issues of some sort from their trauma they have face. The majority are milder or moderate, but some can be severe. For older child adoptions we need to expect Post traumatic stress disorders. Trust issues, and Attachment Disturbances. Why wouldn’t they?
They are removed from the only people they knew, put in institutional settings, or disrupted placements.

Often kids act out their stress and those behaviors can cause multiple placements. The child also learns that nothing is permanent and if you are bad enough, you move on and you don’t need to attach and trust.

Parents have answered the call to give children homes, not just from the worlds institutions but from the foster care system in our own country. Many parents go through the trainings and say what they can and can’t deal with. But often times the problems will not appear until later when the child can’t hit their developmental milestones that it will become apparent or puberty hits.

I remembered reading early on a statistics of adoption disruptions and dissolutions.
Adoption Statistics: Disruption and Dissolution from Adoption.com.This not a new problem and these are not new numbers.

This article written long before the push to move children from foster care into adoptive homes.We when adopt the children, we make promises to care for them and help them to the best of our abilities. But for some parents, they find themselves with a child that nothing seems to help. Sometimes the more you love them, the more you try to care for them, or parent them. The worse it becomes.  Adoptive parents reach for therapists, books, strategies and anything they can grasp for and often times the worse the situation gets.  I remember the conflicting advice I got from the five different treating professionals in the differing spheres of my sibling set of 5. The advice from one conflicted with the advice of another, and learned to trust my own intuition and fire the ones that were worsening my children’s conditions.  The Reactive Attachment Therapies do not work well for kids prenatally exposed with alcohol. They actually worsen them. Then the schools with their behavior modifications that do not work with FASD and then the triangulation of the child pitting unattached people against the caregivers. It is a set up for Adoptive Parent Burn Out and a child in danger of blowing out of a home.

Parents are finding themselves having to run residential treatment facilities without any training or support. I have seen adoptive parents/kinship caregivers have to manage kids that have been released from psychiatric hospitals because they could not be managed there. Thrown out of schools for misbehavior’s and left to function solo. All the while trying to be on guard 24/7 to protect the child, the other children and even themselves from catastrophe.

The failures of the mental health system in our country for children are written.
America’s Failing Mental Health System, America’s Struggle to Find Quality Care

But for the complex children from the care system, they are stuck in a place where the care systems and mental health clash. They are always the others responsibility.  For those who bring in kids from other countries they are in a No Man’s Land and often on their own.

I have added to this piece a chart.  My favorite with sharing just how complex these children can be. Overlapping Characteristics.  I once asked a person in power in the state mental health system. Where is the evidence based practice for my children?  He didn’t answer, except with the statement you are?

What I learned is that I had to trust my intuition, leave no stone unturned, I had to fight for my daughter, but also know that I had to keep everyone safe.

Overlapping Characteristics Download PDF

But the systems of help in our country are failure based. Not preventative. The medical system can diagnose the prenatal exposures, but can help us understand the cause. The Children’s Mental Health system is not the right place for those prenatally exposed to alcohol but often can help those with the complexities of abuse and neglect issues.  But as children mirror the behaviors of others others, these children learn from their peers and those behaviors often worsen in the home. But the lack of competent support for those from the care systems is a challenge.  For my kids the Mental Health system and the groups for those kids actually worsened my kids disorders.  Knock on the door of Adoption Support and often they tell you you have to use your insurance and Medicaid first.  But that is another series of Medicaid stories about that failures for the most vulnerable of children.

But our kids have no coordinated Silo to find support. Many of the children from the care systems are often of normal intelligence, so developmental disabilities services will not help us. Mental Health services are a poor fit and the strategies do not work with children with prenatal brain injuries. Those lucky enough to present as having autistic tendencies may find services under the Autism Umbrella.

I was told to look for help in places that were not equipped to handle our needs. I was not an abusive parent, I was not a neglectful parent. I had a daughter too dangerous and damaged to live at home. I was ordered by the Community Mental Health System that I had 60 days to relinquish our daughter and to dissolve the adoption or be charged with abandonment. That document came up missing and I had thought to stow a copy hidden where no one would look for it.  Someone told me that when you go public documents burn.

I had been warned that if we abandoned my daughter in the state hospital, we would face charges and the loss of our other children, not just the adopted sibling set, but our own biological children.  The care system trumps parents say, bring this child home or possibly lose your other children, your professional licenses, and be put on the abuse and neglect registry. It is Least Restrictive Setting that is used to say that ALL children belong in the homes and then it is our fault that we are ill equipped to meet their needs.  Even when someone gets hurt, we need to go against the recommendations from the professionals that we need to have them home to attach.

If you have to place your child into foster care system, the adoptive parents often lose their adoption subsidies if they are lucky enough to have one if you adopted from the US or if you adopted internationally you will be charged with the cost of the child’s care.  I have even seen where an adoptive parent was charged and they took not only the child’s adoption subsidy but the adopted siblings subsidy as well and handed the adoptive parent the bill from the state and put liens on the parents home. The same state that adopted the child to the couple and the agency hid the records.  Adoptive parents are often charged with paying for the court fees to get help from the justice system when the Child Welfare and Mental Health Services fail. Too many adoptive parents face calling the police as the option of last resort. Followed by the knock on the door from the Child Protective Service Workers.

No wonder why parents take into desperate measures to find support, the wrong way. Because has anyone tried to Navigate the MAZE to find help for those most vulnerable of children who are the small percentages of kids whose needs are great. Some of us who find ourselves with a child with intense needs, we will get secondary trauma not just for the parent, but the siblings as well.

PTSD in Parents of Children with RADWe are held accountable for the failures of the Child Welfare, Adoption and Child Mental Health Systems, Medicaid, Insurance and Schools to have a Continuum of Care and a Safety Net.  and it is time for all of us to stand up for finding Post adoption support services and a continuum of care for the  the adoptive children and families so they can honor the promises. For those of us who have adopted from the United States Foster Care System we need not just a check, we need real help and not be judged and serviced by the child protective services the same care system that our kids came from.We need a post adoption program and laws that will protect our families from the catastrophic costs of having a child with severe issues.

We need the media to focus not just about the adoption horror stories, but real stories of real families fighting the odds to try to help very complex fragile children.  We need evidence based adoption conscious services and supports in all the service sectors and those parents will not resort to give up on their adoptive children.  And for those children who do not fit into the adoptive home, we need laws that no do penalize the family for trying to find healing for the child and for everyone involved.  It should not be seen as failure, but just another place to meet the needs of the child.

We did not give up on my daughter, or her siblings, but we did pay a price. Many an adoptive parent said that they were more traumatized not by trying to help their child.  The trauma of the lack of support and navigating the systems if often times are much more damaging than our circumstances.

Postscript: My daughter is now 28 and she still has a family to advocate on her behalf and call home to and we have gone on to adopt another little guy with Fetal Alcohol Syndrome plus a host of other problems and he is thriving. We have full disclosure, we will do whatever and find whatever it takes to give him the love and supports to thrive. But we also know that we cannot heal his prenatal brain damage but love him and nuture him through his challenges.

A followup to our story written for the North American Council for Adoptable Children in 2003

True Commitment – Fetal Alcohol is NOT who I am!

CLICK TO PURCHASE

Liz Kulp founded the FaceBook Group for adults and teens living with the challenges of FASD. Her group is called Striving for the Best Ability – Living with FASD not letting it defeat me.

If you know a teen or adult who needs positive – faith based input – check her site out! I’ve learned so much from my daughter whose life is affected by Fetal Alcohol Spectrum Disorders (FASDs) — Author, Liz Kulp, celebrates life at age 27. She is a published author of two books and winner

Braided Cord Tough Times In and Out

  • Mom’s Choice Gold Award – Adult Non Fiction – Life Challenges
  • 2012 USA Best Books – Health -Recovery and Addictions.

Best I Can Be Living with FASD (Revised 2013!)

  • Mom’s Choice Gold Award – Best Contributing Young Author
CLICK TO PURCHASE

Congratulations Liz on Four Years of Sobriety and Five Years of Living Independently! You are achieving your dream of making a difference in your generation to prevent FASDs! Blessings on beginning the career of your dreams this year!
Mom’s Choice Gold Award – Non Fiction – Life Challenges

TO VISIT LIZ’S WEBSITES
 www.BraidedCord.net  or www.BetterEndings.org
TO ORDER HER BOOK  https://www.createspace.com/3436934
TO VISIT FASD BOOKSTORE www.fasdbookstore.com

To read more from Liz’s book click here

Committed to each other for a life
worth living – walking the road
of FASD together

True Commitment
(Poem circa 2008)
By Liz

Alas I sit,
glued to a place of undoing and unmaking
of all the mistakes I have achieved
or contemplated making.

Waiting for renewed independence.
Proving to you who I am
and who I can be
and who I shall become.

No longer broken, but bent
Bent upon making a difference
with different choices and
new becomings
Reframing my thoughts
and laying down my rebellion
to fight for a future
instead of wants I thought
I so needed but didn’t
An though committed by a decree
that states I am an “other”
in need ot care and watchful eyes

I have learned what commitment
truly is – that it is the love
of family who remains
hopeful and helpful
that it is the love of
my sweetheart who
stands true
that it is a belief in myself
that I can do and be better
and emerge from
a state run commitment
to a self formed commitment
of being true to myself
and all of you.

Would you expect a person without vision to learn to see by poking them in the eyes?

Learning to see the trail by walking in the forest
What wires together fire together and for our WHOLE lives our brains continue to grow as we continue to experience new things. In Live Abilities natural classroom program we mark trails for self-discovery. Joyful self-discovery allows a person the greatest learning opportunity. Because our learning strategy begins with a trail guide marking trails our participants must first learn to look and see the markers of opportunity.
A forest is filled with exciting experiences-a line of ants helping each other carry a dead insect carcass to their hill, the calls of different birds, the chatter of tiny creatures, footprints heading in unknown directions…  
Nature allows us to think outside of our inner thoughts. 
Natural movement in natural settings through play allows us the opportunity to GROW NEW BRAIN CONNECTIONS.
   “Scientists are discovering that physical activity alone is enough to trigger a boost in brain cell proliferation and that specialized exercise programs may help repair damaged or aged brains.  For twelve years in Denmark, an experimental School in the Forest for kindergartners proved an innovative and effective way for children to develop school readiness skills. The children climbed trees, ran, played games, developed their imaginations, explored and learned about their surrounding world with their teacher. The results were first graders ready to learn.
Getting your arms and legs moving and the heart beating faster increases the blood flow to the brain. This blood keeps our brains healthy by feeding our neurons with oxygen and nutrients.
Our yard became a playground with balance structures, hammocks, tire and porch swings, hula hoops, bubble blowing sticks, chalk and jump ropes as neighborhood teens joined in the fun to help Liz. We all had a reason to go back to child’s play and have fun doing it. Who said any of us should outgrow childhood?
The sun smiled on us as we climbed new mountains and planted gardens.  Fourteen years after Liz joined our home, she finally rolled down hills and played sidewalk games. Liz smiled at the snowflakes as they fluttered down on a cold night. She stuck out her tongue in a rain shower and caught raindrops on her face. The time arrived to make snow angels and take walks in the rain.”
Can we create new neural pathways? What can you discover in these two pictures? There are thousand of opportunities to learn  through experiences in a natural classroom. Click each photo to see what you can discover when you look deeper.
Many thanks to Jim Strohecker (Jim@healthy.net ) for his original idea about the sensory awareness walk listed below. In honor of the people I love I keep sharing what I learn. Blessings to families and persons living with prenatal exposures to toxins—together we can make a difference.
Try a Sensory Awareness Walk this week and leave a comment about your experience. In the beginning and perhaps for some people forever – please do not mix the modalities.
  
BREATHING WALK
  • Begin by allowing your mind to focus on your breathing as you walk. Simply notice your breath. Don’t try to do anything with it. Just notice.
  • Where in your body do you feel your breath? Your abdomen, chest, back, or even high in your collar bone?
  • What do you notice? Is your breath smooth, rhythmic and easy? Is it hesitant, sporadic, or labored?
  • What else do you notice that perhaps you haven’t noticed before?
  • As you focus on your breathing, does anything change without you having to purposely try to change it?
SEEING WALK
  • Shift your focus to what you see.
  • What are the shapes, textures, movement, and colors that you notice?
  • Can you look without naming the objects you see, even for a few seconds, but just see them as shapes, textures, movement, and colors?
  • If you are in familiar territory, are there things you notice that you’ve never seen before?
HEARING WALK
  • Shift your focus to what you hear.
  • What sounds do you hear?
  • Listen more and more deeply, what are the sounds underneath the sounds you normally hear
  • Even for a few seconds, can you hear what you hear without naming the sound?
  • What are the nuances of the sounds? Are there aspects to the sounds that you never noticed before?
SENSING WALK
  • Now shift your focus to what you sense in your body.
  • As your body moves, what do you notice? Gently scan your body as you are moving, starting with your feet and ending at your head.
  • Can you feel your muscles as they move?
  • Can you feel the touch of your clothing, air, or sun on your skin?
  • What can you notice that you’ve never noticed before?
BRINGING THEM ALL TOGETHER
  • Now see if you can bring breathing, seeing, hearing, and sensing all together as you mindfully enjoy your walk.
  • Don’t worry if you find yourself quickly shifting between these channels of awareness. Just keep practicing and see if you can, even for a few seconds, be aware of them all at the same time.  What do you notice that you haven’t noticed before?
Want some more great ideas also visit Integrated to Live Blog

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

Live Abilities with #FASD —Changing the meaning of success

From one of my readers –

Then tell me, how do we get funding for our kids who will need it. It’s all nice and sweet to wish for this, but you of all people should know better. 

Our kids need life long support. That is a disability. What we should be concentrating on is having the diagnosis be a death sentence. Change the meaning of what success looks like.

 

My Response:

Yep, that is exactly what we are doing… changing the meaning of success… finding abilities to build companies that these adults can work in…
            and you are right there IS no money
– this idea began because I went after an 18 month grant to build job opportunities for persons with FASD and I pulled six (semi functional adults in with me as information support) — we did not get the grant, but I could not let them or the project down as we had been working on this in the building of the concept and they trusted me…

            and I listened to them.

They begged me to NOT stop and abandon them as everyone else had – they have all experiences in supported living – losing jobs – chemical issues and they are now sober and faith based adults 26-36 years old. So I said ok I will keep going and I developed and designed the website with them as my art directors and guides…. the site took me four months of my free labor for all the programming so it could work with their smart phones and Ipads if they have them.

So what is success—
it is feeling like your life has a
purpose and you matter.

One tried for college entrance – her scores needed to be 35-35-35 – she studied she did her best and she got 34-34-46 – her dream still exists but how can it be achieved – she is probably capable to work 3 hours a day, maybe 4 as long as the environment is manageable… and that is not college — so we moved on to another do-ABLE opportunity that everyone can participate in…. from the next idea we hope to build something for others to participate. We have to start somewhere…

Another two got jobs over the holidays—that lasted through the holidays and the fall out from having those jobs is incredible and something most people never ever think about until you are behind the scenes

Another moved from assisted living to independent living with his fiancé and is working…. yes a glorious job of dancing as the Liberty Lady and the Little Caesar Sign persons — he does both jobs extremely well — and handles the community hecklers quite well too… Purposeful? yes he is given extra money to get a few things like save for a small freezer so he can buy food cheaper.

Another has spent almost a year untangling from the justice system for an offense he did not do, walking the walk with cognitive translators to make a difference—what he also has accomplished without a job this year is— was Santa, spoke to the governor about his 100% preventable disability, explained Live Abilities to a Senator and what the difference in thinking is when you have hope, is mentoring a young man struggling with chemical use, gave his testimony to the mission for homeless… yes his life is now purposeful and not punitive!

And all those are successes….

Is there money – no – no money.
I am working two jobs at $10.00 an hour to help make a difference – and using every minute I have that I am not working for others to help make a difference for the adults with FASD – is it easy – no this is the hardest most difficult job I have ever tried to accomplish.

The diagnosis is not a death sentence—in state commitment under the care of professionals my daughter almost died – on her own in the streets she needed to be defibrillated two times…. yes it can be a death sentence – without the right supports—but you and I are going to die too and we will die sooner than later if we don’t take care of ourselves… if we don’t figure this out… Warehousing our kids in prisons or hospitals or on the streets is not a solution…

First we have to figure out what success is for them…. and that can’t come from our minds and hearts it must come from their hearts and brains. All three adult couples I am working with are living with supports — and with the right natural supports they are functioning as purposeful adults.

It is not easy. It is not pretty. But they mostly like their lives…

Please consider joining us on this journey. I am interested in your viewpoints.

Jodee

The Innocents… FASD…. Victims

The Right to a Healthy Brain

GUEST POST by ANN YURCEK
award winning author Tiny Titan
Keeping Up with the Tiny Titan –
original post April 3, 2013

I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.

“Why did she and Little Guy not have the right to be born with healthy brains?”   

How can I answer that question?

We  were venting about the unfairness of FASD.  Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they “just” don’t fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.

For the fortunate few, they can fit someplace. They fit on the DD if their IQ’s are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.

But also, why can’t we get help for those with FASD’s. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child’s brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.

Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other “little” d’s that they will be their umbrella.  ADHD, ADD,  ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d’s that they will find a label, but never the underlying cause.

But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella’s that often times are a poor fit.  Many will not.

But there is no place for them to find supportive services that really address their unique needs.  They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can’t manage to learn and keep the sobriety they teach.

Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help? 

I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders???   There were those who told me that it was TOO LATE to help my children and just write them off.

We need HOPE, we need HELP, and we need to recognize FASD.

They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother’s drinking. 

Steps into Live Abilities – We take ”DIS out

Purposeful Living – Striving for the Best

Sam giving MN Govenor Dayton one
of our Live Abilities introduction cards
My father often said, “If you have a problem, shake it out, shake it up, turn it upside down. Problems are opportunities to solve.” And solve my father did – rising to managing the construction of high rise construction and building a round house with scraps of this and that – because he could—the we in family could. 
My father lived a purposeful life filled with Live Abilities without a ‘dis among us. Why? Because he believed it wasn’t where you came from that mattered, what matters is now you do your today. 
– Jodee Kulp, Trail Guide for Live Abilities
Purposeful living is how you live in your NOW!
So how does one achieve purposeful living? 
The first step in our Live Abilities program is discovering your strengths and being truthful about all the challenges you face. 
We get our challenges off our hearts and onto a piece of paper where we can pick them up at anytime we feel the need or leave them there. We put them in a safe place for rediscovery as we grow.
Then we brainstorm our strengths:
  • What are we good at? 
  • Where in life have we found the most enjoyment? 
  • What was happening? When? 
  • What do we really have fun doing? How come?
Then we find two or three sober and faith based people to become our Braided Cords –  Each of these individuals will provide additional strength, support and flexibility to allow change to occur. 
Join Us on our Journey – Liz and Sam

We just relaunched our revised website for adults with hidden differences at www.betterendings.org 

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

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