Saturday, October 24, 2009

My Invisible World Rocks CNN Atlanta

Morasha Winokur speaks out on CNN. Go girl, you did a GREAT job!!!!

Wednesday, October 21, 2009

A Kid Who Rocks - Morasha's book is moving FASD mountains!

CMS sixth grader, Morasha Winokur, featured on CNN On-Line’s show, Young People Who Rock!

Join Morasha’s journey as a young author as she publicizes her book, My Invisible World – life with my brother, his disability and service dog. Go to: to watch her live interview from last Friday. Get a book signed and meet Chancer, an irresistable 90 lb. Golden Retreiver, who is the first certified service dog in the U.S. to help a person living with the “invisible” life-long disability, fetal alcohol syndrome (FAS). Morasha will be at Walden Books in the North Point Mall on Saturday, November 14th at 1:00 pm. We’ll keep you posted about other upcoming events. To find out more about Morasha’s book and Chancer, visit

The website is now up - take a look around!

Wednesday, July 22, 2009

Toolbox Parent Radio is making a difference. Thanks Victoria for last night!

Deb Fjeld, Minnesota Parent Advocate and I, Jodee Kulp, recently completed our 8th broadcast of Toolbox Parent Radio on Global Talk Radio. When we were first selected to share our insights into the rough and tumble world of living with intense and atypical children/adults with a variety of diagnosis – we weren’t sure we could do it.

Could we get a large enough audience?
Would people be interested in interviews with us?

We are happy to announce our numbers of listeners are growing each week and we are almost booked for interviews through year end.

So I guess we are doing it!
And…we will keep on keeping on…and on….and on

Last night we chatted with Victoria Deasy who has been a special education teacher for 36 years and is Mom to a young adult with multiple issues. As she said last night,”Nothing prepared her for the real day to day world of parenting a person with fetal alcohol, FASD. She felt so alone.”
Alone is what we want to help. Deb Fjeld and Jodee Kulp, offer our voices and friends in the disABILITY world community to help provision families and professionals to support persons with neuro differences.

Listen to July 21 archive with Victoria Deasy at (main show page) or (July 21-Victoria Deasy archive).

Wednesday, July 15, 2009

Entro Magazine 2009

Entro Magazine 2009
Click the link above to see the WHOLE magazine

Shared via AddThis

Thursday, April 16, 2009

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

May his family be blessed in their remembrances.

Saturday, April 11, 2009

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

Wednesday, February 4, 2009

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."