The Million Mind March starts with a single step.

Daring to Live - He Won The Million Minds Race Without Ever Taking A Step

Jim Grimm never joined our Million Mind March, he died yesterday quietly in "his" home. He was 42 and he Dared to Live with Cerebral Palsy that captivated him to rejoice in a life few live so strongly. He never uttered a word, yet he profoundly and joyfully touched the lives of all who came to know him. He was an inspiration to all who met him.

Born with cerebral palsy and unable to communicate verbally or move of his own volition, Jim turned his severely isolating lifelong disability into a gift of connecting deeply with others. The community of Chisago Lakes rallied around the family while Jim was in preschool, little Jim went to school and graduated with his class in 1986. He was a friend to all. Independent and strong spirited, he moved into his "own" home as an adult and was surrounded by care givers who became his "Friends." He climbed the first Liberty Ridge.

His Award Winning "The Heart's Alphabet - Daring to live with Cerebral Palsy." Won National Mom's Choice Gold Award for Adult Memoirs. The Heart's Alphabet is Jim's self-told story, painstakingly spelled out, letter by letter, with the assistance of an interpreter is a tale of personal perseverance, a tribute to loving families, and-most of all-a testament to the possibilities that lie within each of us.

• Jim ran the race of life wearing a wheelchair.
• Jim taught life living independently hurdling barriers other placed before him.
• Jim climbed Liberty Ridge - he scaled the impossible as a man
• Jim spoke letter by letter with his tongue - his words and life live on in his book
• Jim loved life, people, concerts, vacation, travel, sports & his dogs.

His dogs was how I was reunited with Jim last year. Jim was looking for a dog and he knew what "he" wanted. After visits with my large size puppies, he clicked with his tongue "No." For Jim his No has always meant no, and his Yes has moved him forward. He never settled for I Can't. For Jim has always been able to work with his family, love with his family, and do with his family and the community he became a part of - He expressed his needs - as a child and as a wholesome and loving man.

His parents, his sister and brother and the community he embraced can rejoice in a life lived with courage and strength. He won the race, he finished his life and I am sure on both feet this man raced into heaven - his job well done! For Jim death was his first step - and knowing him his body free he can now run and jump at last.

"If I rise on the wings of the dawn,
If I settle on the far side of the sea,
even there your hand will guide me.
Your right hand will hold me fast."
Psalm 139:9

His website is http://theheartsalphabet.com/

May his family be blessed in their remembrances.

Million Minds March

When Budget Cuts Create More Fail Firsts

There is no doubt that funding cuts are necessary,
and everyone will have a special program to address.

As a parent who has volunteered thousands of documented hours to MNASAP and daily provides 2-4 unpaid hours to adoptive families in crisis with tough kids I need to note that the infrastrucure these organizations provide me allow for efficient additional access to parents with children in crisis or handling complex issues. Families who adopt our Minnesota Waiting Children and Foster Families need supports to do a larger than typical life job. Behaviors due to genetic factors, prenatal factors and complex early life experiences are compounded when children are moved from family into new or established temporary family. These programs hired experienced, trained adoptive parents across the state to provide support, parenting skill development, and referrals to adoption-competent professionals and other community-based services to stabilize adoptive families and it was a place I could direct a family spinning out to gain parent to parent support - or be referred to trained and skilled professionals,

It has taken 10 years to get where we are today.
My daughter (diagnosed with fetal alcohol brain damage at 12.5 years) is in the first generation of this care - (one of the first three high-risk legal adoptions in 1986 - a foster baby at five months adopted at 14 months) She lead a successful life as a teen - graduated from high achool and passed her basic standards with a 70 IQ. This success happened because there were other organized families that surrounded us with ideas, compassion and directives to appropriate healthy supports. Other families we connected with who laughed and cried with us in this journey - developed friendships for respite.

Challenging children need safe places to play with caregivers who understand their issues. This is a chicken and egg issue - one could place blame on the child, or the new parents, or the system, or the original family. One could state this is an inappropriate funding priority that needs to be slashed. OR one could say that this system is working for families and children and because of this program we are seeing less complex issues arise. Our infrastructure fell apart when she reached 18 and aged out of supports - just as it has for so so many of these kids.

My recommendation, and I am but one, would be to increase ASAP and Harambee funding to develop an continuing adult program so that transition to adulthood is smoother and successful. Minnesota has been a leader in this area - these are the most vulnerable of our children - tough on the outside and fragile on the inside.

I challenge you to:
1. check the number of adoptive children (or previous foster children) in adult mental health
2. check the number of adoptive children (or previous foster children) who are incarcerated

CHECK THE COST of our adult failing infrastructure and it will give heed to what is about to happen to the younger age group also. Please look carefully at this issue. The answer is more complicated and it is perhaps because this sytem is working you do not see the total possible fallout. Parents are beginning to call and rely on other parents that is a real outcome, they also seek professionals when the issue become greater than what they understand.

In this time of economic trauma our young people suffer, our children suffers and our country suffers. The cost of adoptng a traumatized child is great. The cost of not allowing a child to have a healthy family is greater.

MN ASAP and Harambee have been instrumental in keeping families together - Personally I want to congratulate them on a job I hope they continue to do well.

Jodee Kulp
Director of
http://www.betterendings.org/
http://www.toolboxparent.com/

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."

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.