#6 Days to FASDay - I have a dream. . . .

I have a dream....

That one day little children will not be born with brain damage because of the alcohol they were fed before they were even borm.

I have a dream. . .

That one day persons with inivisible disabilities will not be treated second-class citizens, but will be able to participate in their local communities accepted in their differences

I have a dream. . .

That one day predators and persecutors will not addionally victimize persons with fetal alcohol. That people will realize it is no joke. That the day - to - day struggle is real and cannot be kissed away, or bandaged or ignored.

I have a dream . . .

That one day we will see all people as mattering.

As my young adult daughter says so profoundly, "You can't be handicapped if you are born like that. You just are."

FREE June 2012 Issue Adoption Today

Adoption Today is giving the June issue away for FREE from their website at www.adoptinfo.net. Throughout the month of June visitors to the site will be able to click on the flipping icon for Adoption Today and view the entire 72-page issue at no cost. For the staff of Adoption Today, this is just one more way they are dedicated to giving back to the adoption community and trying to positively impact the lives of families and children.

Special THANK YOU to the folks at ADOPTION TODAY.

We Love You Guys!

Jodee and Liz Kulp

I have a dream. . . .

That one day little children will not be born with brain damage because of the alcohol they were fed before they were even borm.

I have a dream. . .
That one day persons with inivisible disabilities will not be treated second-class citizens, but will be able to participate in their local communities accepted in their differences

I have a dream. . .
That one day predators and persecutors will not additionally victimize persons with fetal alcohol. That people will realize it is no joke. That the day - to - day struggle is real and cannot be kissed away, or bandaged or ignored.

I have a dream . . .
That one day we will see all people as mattering.

As my young adult daughter says so profoundly, "You can't be handicapped if you are born like that. You just are."

Grandpa knows I'm a good girl

This poem has been  published in Braided Cord by Liz Kulp

Grandpa died on Friday
And I really did my best
My mom left home without me
And my dad was put to the test
My father is a woodworker
Like my grandfather before
And my uncle asked my daddy
To make the box for grandpa to soar
And so I went to my friend’s house
And had a really good time
I missed the mortuary
So I wouldn’t stand in line
I called upon my mother
who was busy as can be
Writing up the remembrances
and an obituary
I asked her to please come home
And do my pretty hair
I wanted my sweet Grandpapa to
Really know I cared.
But she said I’m sorry darling
I can’t come home tonight.
I am sleeping with your Grandma
Go to bed, turn out the lights
I went downstairs the best I could
It was actually time for meds
I could feel my hands shaking
But decided not to go to bed
Instead I stayed up fixingAnd fixing my pretty hair
And nothing seemed to be working
As I thought of grandpa
A way up there.
In a mighty fit of frustration
I pulled out and then redid
Only to see in the morning
There were bald spots on my head
I picked my clothes out carefully
Something grandpa would care
A bright red shirt and blue jeans
And barrettes for my hair
I worked til’ almost morning
The sun was about to rise
I took my medication and
Closed my pretty eyes

I didn’t hear the alarm clock
Dad jumped me out of bed
We’re leaving in five minutes
Was all I heard he said.
I grabbed the red shirt I’d chosen
I jumped into my jeans
This wasn’t how I wanted it
I hate being me.
I wanted to look pretty
I wanted to do my best
Instead I went overmedicated
And looked a sorry mess
The red shirt I was wearing
Looked like a club night
And the jeans I jumped into
Were not at all right.
The medication was humming
As we pulled quickly away
And I could tell inside myself
It was going to be a terrible day.
I did my best to be happy
I forgot my morning meds
I wanted to show everyone
How hard I’d worked to be
My very best.
We missed the visitation
We almost missed the church
I missed the long progression
That headed with the hearse
I missed the soldiers shooting
I missed putting grandpa in his grave
I finally understood this was not a very good way
I wanted to hold my mother
Who was busy for her dad
I wanted to hug my family
Who seemed sometimes happy sometimes sad
I didn’t eat a breakfast, and I forgot a snack
I even forgot the medication that I usually pack
I called my dad to say sorry
I tried really hard to be nice
But it got really obvious
People were looking at me twice.
My Auntie told be about the rose
Thar laid upon the stone
And I went to say goodbye to grandpa
When I was alone.
I looked upon each stone I saw
Holding eagles, plaques and pain
Not one stone held the rose
I felt I was insane
I went back home to tell them
That it was no longer there
My Auntie said go back again
And look down and stare
The rose will have grandpa’s name
I really know you care
I watched my feet a walking
And the rose still had it’s stick
But the stone they had told me to find
Was actually a brick.

She’s 22, I overhead
She’s able to behave
She’s doing drugs another said
My grandpa in the grave
I ran away to grandpa who was watching way up high
And I marched around the little town trying not to cry
Lost and scared and empty
My Auntie took me in
And we journeyed to the jail house
To prove I didn’t sin

I looked into the mirror
At my face when I can home
And I soon discovered I was not alone
My mother saw the bare spots that covered over my head
And I went into the bedroom to get my pretty shirt of red.
I held it up before her and I looked into her eyes
And we finally held each other
And she finally cried
And I told her that I loved her
And I said it was too bad
And I told her I love daddy
Who is my real dad
And I told her not to worry
Because I knew something true
That Grandpa saw me for who I was
And that she did too
She showed me the spent chamber they shot for grandpa today
Grandpa knows I’m a good girl, was all that I could say.

Changing a ‘Pair of Dimes’

The miniscule cells that worked diligently to become a completed little person were zapped with a night of binge drinking.
Kaboom!

A night of partying a few days later zapped more
... Kaboom!

And then another night of social drinking
... Kaboom!

And at a business conference
– Kaboom! - another set of brain cells were destroyed.

Alcohol is a ‘teratogen’ (a substance that is toxic to the baby’s developing brain). Since the brain and central nervous system are developing throughout pregnancy, the baby’s brain is vulnerable the whole time and alcohol may damage some parts of the brain while leaving other’s intact. This loss is lifetime brain damage that affects the childhood, adolescent and adulthood of the individual.

Parenting a child with hidden brain damage is complex, but being the person with this lifetime invisible disability places the individual in the position of being a stranger in a strange land. What can we do to help a person we love or care for? A crucial first step is to accept we are parenting a person with a brain that is damaged and realize ‘normal’ behaviors may not be feasible without support, environmental control and special training. By changing our frame of reference, our caregiving strategies will change.

Accept The Whole Child
Prenatal exposure affects more of the child than simply their brains. In our daughter’s case all of her processing systems from the tips of her fingers and toes to her eyes and ears were affected. Her pupils did not dilate properly and she was unable to compensate for changes in lighting. She was a mouth breather and feared closing her mouth because she believed she’d die. She could not feel her fingertips. Her senses were confused and light touch felt painful while a major injury didn’t hurt. Her circulatory system and digestive system didn’t work properly. Her infant reflexes were still engaged at age fourteen and she could not cross her midline. This midline crossing affected her ability to play games, sweep and even chew.
Each of these issues complicated learning at higher levels and we discovered teaching the earliest missing development steps strengthened those later steps she already knew.

Teaching Backwards to Move Forward
A willful looking child may act annoying and steadfastly refuse to participate or try something new. Hurt or fearful, they become defensive. It is easier to be mean or have a tantrum than to say you don’t understand. On the other hand, the child may appear lazy and unmotivated. The child may not know how to begin what is being expected and does not want to fail.
Liz, my 19-year-old daughter explained, “Mom when plans change or I have to learn something new, it is like I am standing on a blank nothing. I don’t have pieces I can use to help me. I need someone to guide me to get me to that new place. I don’t want someone to be condescending to me and treat me like I am not intelligent. I can learn. I just don’t learn like other people. Sometimes it takes more time. Sometimes you have to try different ways. I have to do something many times to get it. It helps to know how I need to finish so I can start.”

Liz’s last sentence gave me a clue of how to help her. When I am teaching Liz a new skill I let her help me finish what I am doing instead of starting from the beginning. For example, in making her favorite Tator Tot hot dish she began by adding the cheese layer to the meat and topping it with the potatoes. I helped her carefully put it into the oven, set the timer, remove it and proudly exclaim she had done it ‘all’ herself. The next time she opened the soup and added it to the fried hamburger and onions. She poured the hamburger mixture over the mixed vegetables and remembered how to finish the hotdish on her own. Building skills backwards provides the joy of completion.

I have learned to change me. I cannot control my daughter’s behavior due to brain injury any more than she can, but I can provide a learning environment to teach her coping skills and adaptations. I can help her learn to become an advocate for herself by learning how her compromised brain and body work so that before she gets into trouble she asks for help.

Frames of Reference
“I am so stupid! Why do I do such stupid things over and over and over again,” Liz shouted. I had wondered the same thing myself. The answer was simple. Until she has enough experience with the same thing, at the same time, with the same people and the same surroundings, she is unable to access information in her brain. This is the difference between real life and a video game.

A video game follows the same path with the same codes for the same results. My daughter can win a video game once she has discovered the order to push the buttons. The repeating game process is a secure learning place for her. Unlike video, my home constantly changes. The dishes may be dirty or clean, the stove off or on, and the refrigerator empty or recently filled. People interrupt with phone calls and doorbells. These normal day-to-day differences that I hardly notice change her frame of reference.

For example, her frame of reference affected her spelling and math. Sitting at our dining room table, with a dog at her feet and mom next to her she aced her homework. She felt confidant carrying her knowledge in her head and her homework in her red folder to school. But her frames of reference change in the classroom. The desk felt different from our table, the young man behind smelled of cologne, and she heard the fluorescent lights buzz. The knowledge gained by hours of homework vanished. She broke her pencil and hit her desk. She knew, she knew it! Where did it go?

Her teachers began emailing me the next week’s lessons. On Sunday night I presented a sneak preview. We translated vocabulary into language she understood. I prepared her for new concepts by saying “I’m going to show you what Mr. Jones will be teaching, if you get frustrated when I am showing you, tell me and I’ll stop.” This gave her permission to gauge the amount of material she could comfortably absorb. She warned me when she felt frustrated and we switched to reviewing similar material she already knew.

As the teachers worked through the week’s lesson, Liz had ideas and stories she was able to contribute. She no longer remained silently shaking her head, appearing to understand while everything flew by.

The Process of Time
“Mom, if plans change it is like I am walking along and I fall into a hole. I don’t know how to get out. I need help to get back on track.” Liz lives from one process to the next. An event is a point of reference in her life much like we use time. If events happen too close together she becomes unable to managed and is stressed. If plans change she has nothing to fall back on.
Care giving a person with brain injury is hard. I have to remind myself often to take care of me so that I can take care of Liz. She resists when she doesn’t understand something. She is mean to those who love her when others have hurt her. We are the safe sentinels. She is drawn into environments of excitement and chaos, where she is hurt and taken advantage of. She makes strangers her friends and treats her friends as strangers. I love her unconditionally. Her growth to adulthood will be long and hard won. I treat her now as a chronological adult, albeit she is still a child in so many ways. I cannot walk in her shoes, but I can walk along side and guide her. I can be there to pick her up with compassion when she falls. I can keep my focus on looking deeper and forever changing my paradigm.