Best I Can Be by Liz Kulp will receive gold award in 2009

Being an adult with FASD is a struggle and a bright light in this holiday season for our family and especially Liz Kulp is that her book The Best I Can Be written when she was almost 13 will be recognized as the Mom's Choice Gold Award 2009 for Best Young Author. Liz's dream was to provide information to people who could not understand how her brain works and how she thinks and enjoys life. The book was a hard struggle for a young person who at that point did not write, each handwritten paragaph copied from recipe cards took over twenty minutes.

It has been a privilege to embrace parenting Liz - a struggle sometimes for both of us, but never without wonder and adventure. My daughter never ceases to amaze me with her insight and how she understands the world. I want to publically congratulate her for risking voicing her opinion and openning the doors for others. Liz will continue to open doors as she transverses adulthood - watch out world - she just keeps on moving forward in a dance that is all hers. - Blessing on the work you are doing in your next book - may it change as many hearts of those who do not understand as The Best I Can Be.

- Love Mom

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.

Bear In Mind

The bear is back in my mind
a grizzly wrizzly izzly bear
with a flurry of surly wurly feelings
that want to grow
and growl
and snarl
but they can't
because there is nothing
and nowhere to place
the snarly warly barring teeth
feelings so real.

I have no fairy wand
to wave
to make life better
- to change what has been done
to 45,000 children a year
in this country.

Under the hearts
of those who say
they love them.

I want to shout
loud
and clear that

DRINKING

while pregnant must stop
and . . .

that the person
you are growing matters.

That this person
matters to me
and to the others
who will love
and care
and hold the little
he or she.

The bear is back
in my mind as I remember
when you came
so small,
with arms so thin
and legs so small
you were 'bearly'
a nothing at all
except a very big voice.

Bear in mind -
A growling raging voice
proclaiming your incidious beginning.
And not yet half a year
you vomited every thing you tried to eat
until we found the special foods
so you could survive.

And the mama bear in my mind
went looking
for answers
to help you live
and grow.

And you did.

Bear in mind -
A growling raging voice
proclaiming you
could not be touched
or held
or cuddled
and I wanted
a snuggly
wuggly
buggly child
who I could hold-

and so the mama bear in me
found ways to enjoy you
and realize that you loved
the best you could-
until we learned about
how your body worked
and the sensory issues
and the missing pieces
and misconnections
at age twelve

Twelve years too late.

how could a mother not know?
or doctors?
or others so educated-
the bear in mind was there searching
- but not finding
asking
with no answers
because I did not
have the right questions.

Bear in mind -
A growling raging voice
proclaiming that fun things to do
were too intense
and yet you
my child were the most
intense of all-

and I learned to calm
and quiet all the grizzly voices
in my mind
and not add energy
to energy
so you could learn
and grow
and go
and do like other children

- and you grew into a
giving,
loving,
forgiving child
woven with the grizzly bears
of your mind
we did not understand.
Alien in a world I understood
that could not understand you.
With media
and advertisement
undermining all we said-
because they knew
and we didn't
and they were the truth.

Oh the bear in my mind
wants to pound my chest
and more than growl.

Do bears roar?

Bear in mind -

You grew
and you grew
and you grew away
becausewe were not
who you wanted to be
- could be
- would be

The bears in our minds
no longer can remain silent
- pushing each other away
with our snarls and growls
and stares.

We were not the MTV family
or the Bratz
or the Glamour girls-

we were happy in our litle den
with our close friends
doing close friend things-

while you my little cub
needed to run and explore
what you believed were
pots of honey
at ends of rainbows
that did not exist
except in the media
of music and video.

The bear in my mind
watched as you worked your way
through your imagination
of Truth with brain injury
caused by alcohol to the unborn
- 100% preventable

-I asked my child what happens
when you go around the same tree
over
and over
and in her brain injured wisdom
she shared.
"I fall down like a nut."

I smile.
I laugh.
And I know there is hope.

Bear in mind
-I hope you have come
to the end of yourself
dear little baby bear
- your spirit still intact
- so that it can change
the course of history
for others

- you my child are one
- only one of many
- too many
- 45,000 a year too many.

The bear in my mind
wants to hybernate-
to go away
and sleep it all off
as a bad dream

but there must be no hybernation
we and weery
mother bears
and
father bears
must remain awake.

We must embrace
the voices of those
45,000 a year
450,000 in ten years

- we must stand together
with all our bears
in our minds
and change the course of
time.

COMMITTED TO GROW

From Liz

Mom, don't you understand that I am committed with rules and regulations that if I don't obey they will increase my stay, my time, my life will never be my own. I am to participate and comply and obey and yet because they cannot get my medications filled it can be my demise - once again - and I will not let that happen because of medication. I did that once because I did not understand, but now I do. I lost my life and my will to live not understanding my medication and what it can do, that it can curl my fingers and toes and scrunch up my stomach so I cannot eat if the helping pills are wrong in dose or type so what I thought could help can hurt. I cannot unravel myself again. I have worked too hard to rebuild from nothing.

Yet without the medications to sleep how will I not pace, how without sleep will I participate in groups and activities the next day. You wonder why I worry and and am full of anxiety - it is my life they take - when I cannot take my perscription because it is unavailable. And I have heard it before, that they understand, but they dont't. They will judge me. They always do. On behaviors I may be unable to deal with and so I would rather risk fighting to get what I need than lose what I have gained.

I have been taught to be compliant - med compliant. To obey the hospital where they taught me how, and when, and how much, to mould my mind to even and without this prescription filled I cannot be - the me - they desire and want for me to be free.

Red tape and government rules I cannot scale without your help. I need a conference call between my doctor, and you, and the pharmacy. I will even pay for the meds myself to remain compliant. How can I prove myself if I cannot have the tools I need to do the job they require?

I am writing lyrics again mom, for the silent voices of fetal alcohol, I will fight the fight.

A Pit Bull With Lipstick

From Liz

Sometimes everyone needs an advocate
Mom, you know what they call you?

You're a
pit bull with lipstick
and that's pretty funny because
I wear the lipstick
and you never do
You train dogs
but you raise poodles.


I guess me and the poodles
need a pitbull
with lipstickto guide
and show us the way.
and not put up with
our silly billy prancing
but work to keep us
calm and maintained
secured through
the strength of caring.


You're a pit bull with lipstick,
and I know that is true
because I have seen you
march upto a gangster
and neck hold the leader
against the wall to explain
in no uncertain terms why
claiming points for virgins
is not cool.


You're a pitbull with lipstick
and I know that is true
because I have seen you
alpha dog stare down
the most feared of all
who feared you enough
to call his father for advice
Whose father thanked you


You're a pitbull with lipstcik
and I know that is true
because you growl seldom
you don't have to
You're presence changes
hearts and minds to make
better decisions.


I laughed when I heard you
called a pitbull with lipstick
but I know it is true .
And if I got to chose
another mother -


I would have to choose you!

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.