Growing Together With FAS
 by Jodee Kulp

A good night sleep and a shower was just what I needed after spending 6 days in a primitive campsite and driving 12 hours with 20 “normal” 12-14-year-olds girls and my wonderful 13-year-old FAS daughter.

Integrating a special needs “hidden” disability child into this exciting adventure with 4 other adults was a challenge for everyone – my child, my parenting, my leadership, the other leaders and girls. It was a challenge anyway – no electricity for the blow dryers they brought and no hot water...who said anything about needing showers in the planning session. Of course, there was the normal, to be expected grumbles and complaints. There was thunder and lightening, 40 degree nights, wind, rain and bugs, not to mention Wonder Bread sandwiches for lunch everyday! And then there was my daughter....

Change and transition are especially difficult for her. Consistency and structure are what she thrives on while making the chaotic world around her manageable. In her own little nest at home, she  grows securely with routines, family, diet, school and friends carefully monitored and controlled...This experience stretched all the girls, my daughter was no exception.

It was no surprise I found her out of the tent and sleeping in the backseat of my car, snuggled with her own pillow in her own comfort zone declaring this her new homestead - she had found a way to limit the stimulation, remain cozy and establish a routine as close as possible to home. All the girls deserved to be emotionally secure.

It was no surprise to me that she did not finish climbing the mountain, but managed to the point of where she felt uncomfortable, tired and a bit out of control and stopped – being joined by other girls and an adult who felt challenged but didn’t verbalize or express it in quite the same robust way. I did not encourage additional performance and she stayed behind with another adult and I climbed to the top. Her impulsivity at the top was not what I desired to deal with regardless of the beauty of the view.  All the girls deserved to be physically safe.

It was also no surprise when dried soup was made by pouring hot water on top of the mixture in each bowl that she would become indignant, knowing how it MUST, SHOULD, and only COULD be done and proceed to accuse the other leader of incompetence. Once she has learned something the first time, learning a new way of doing it is like pushing a rope.  All the girls were challenged with new and different experiences.

It didn’t surprise me that a diet of boxed macaroni and cheese, white fluffy bread, lunchmeat sandwiches, sugar coated cereal, chocolate, marshmallows and sugar water would influence the carefully balanced body chemistry we had achieved. Old behaviors I had thought were long ago left behind resurfaced. Children with disabilities have less tolerance for lack of sleep, cold temperature, hunger and nutrition. Grace must be provided to all children.

It didn’t surprise me that she did not want to leave her safe car nest when I needed to drive another group. Eruption with the obstinence of a mule, refusing to go and running away to settle her thoughts was to be expected at least by me. All the girls needed assurance they and their personal belongings remained safe in the care of another.

It didn’t surprise me that boundary issues arose and normal playfulness became extreme. The simple words “no” and “Stop”  ignored, while boisterous playfulness escalated as it continued to receive peer attention. The combination of language processing difficulty and inability to shift focus escalated the frustration of unprepared adults. Each girl needed to be respectful of authority and obedient for this adventure to work.

It didn’t surprise me that other leaders looked at me and judged my parental competence by comparison to the other children. That thoughts of fixing everything would be easy with heavy words and threats. But she of all the girls deserved appropriate leadership modeling.

I had seen and experienced all of these behaviors before in different settings, at different times. Actually her behavior was remarkably controlled and basically normal for her. None of it was new to me. What was new was exposing the disability for what it was and openly discussing Fetal Alcohol Syndrome and the resulting complications with the troop. Allowing questions and fielding answers while my daughter was on her walk. Championing the girls and leaders to recognize the different issues and rallying to be on my daughters side when difficulties arise. Teaching them to separate the FAS behavior from who my daughter truly is.

FAS doesn’t relinquish my daughter from societal standards. She is not responsible for getting FAS, she is responsible for having it. The damage to her brain is irreversible. Her toolbox contains impulsive and uninhibited behaviors, electric circuits that misfire when faced with new challenges. Limited critical thinking and incompetent breaks to stop escalating behavior. Her threshold for frustration is very low.

My daughter didn’t reach the summit, but she tried to climb the mountain and that was good enough for this time. In her 13 years she has moved mountains to attain reasonable normalcy. Her eyes now sparkle and she has more good times than bad. I cried tears of joy when she got into the other car on her own for her own adventure.

No one counted the costs when they binged with alcohol. We never understood the costs when we held that dying baby in our arms and took her for our own. The price is fierce, and yet I have found that each struggle and battle builds a bit more normalcy through the pain. This is not just her growth, but also my husbands and mine. Together we have all grown up with FAS.

Jodee Kulp is editor of MFPA News and Views and Author of Families at Risk and Journey to Life.

Alaskan Encounter - Days of Light
– From the Editor – 

It’s January and only a Minnesotan would head to Alaska to warm up. I had the opportunity to join 120 individuals at the FASD Family Camp in Alaska this past week and the adoptive and foster families were awesome. The staff made no destinction of who had a special interest or learning issue and who did not. It would have taken access to the notes to determine who was who.

The children of Alaska remain in my memory - our FAScinating children always do....Taylor a precocious 10 year old, is a DAD to his pet chicken George who lives in his bedroom in a cat tower -- he uses George as his alarm clock....Rosebud, age six, buddied up with me to go dog mushing with a requirement that I take a picture of her dogs pulling and her boots...Raven, age two, helped me paint the stakes for the Alaska exhibition on number of children with FASD...I continue to watch with awe as each state begins carving bits and pieces out of the FASD legacy, finding precious ways to help our children become the best they can be. Families ranged from large to small, single parents to multi-generational - loving and creative all.

In workshops we challenged teens with FASD to show how their brains work and put their ideas on paper....though the exercise was difficult...almost every teen drew a challenging teen problem and then illustrated steps to keep themselves safe. It will be interesting to see if this drawing of steps helps in cause and effect issues.

In another workshop we dealt with emotions and heartbreaks teens will face and how to keep safe during the inevitable. The workshop was for teens with parents as support and it was fun to present  “what I wished someone had told my teens before young adulthood.” They, the children who spend most of their time in detention, listened carefully.

Like the FASD family camps in Minnesota, the Alaska camp is a time parents get to know each other while children and teens can be themselves and no one is judged.

I sat next to one little boy who was very quiet as Jim and I ate with him. Finally he asked Jim, “Are you Santa Clause’s brother?” to which Jim replied, “How did you know?” and from that point on the childen all behaved as if someone had turned on a light! By Jove I think we have the right idea - no more shouting, pouting or crying!

Whose Child Broiled a Cat?
from the editor

“I’m crying. Our local newspaper editorial questioned how a family that broiled a cat can continue having animals. The sheriff was satisfied. It was a five-year-old. Appropriate precautions were taken, including removing stove knobs. It was a regrettable incident.” - Kris

BUT THE DEAD CAT?

The child who put the cat in the oven has severe disabilities. She doesn’t read or understand what an oven does. She is not accepted at church or school.  She has fetal alcohol spectrum disorder (FASD) – a preventable disability – caused by drinking alcohol during pregnancy.

Where is the public outcry over prenatal alcohol and drug damage, neglect and abuse to children?  When are we going to put the welfare of children over that of animals?   

When we adopted we knew our child would not be a lawyer or doctor. We hoped with our guidance our child could live independently, learn to feel love and be loving.

We never thought:

• We would feel alone by accepting another person into our life.

• That other citizens would be filled with prejudice and ill will.

• Our child would be segregated from other children.

• That teachers and neighbors would fear our child.

• Our church members would no longer accept us.

I wish those who fear our child would see our child’s terror and understand our child’s loneliness. That they could view the trail our child walks.

Our child may knowingly or unknowingly injure an animal.  But as Americans we need to see the injury done to our child.  Not just from prenatal alcohol exposure, but by:

• Teachers who ridicule our child in front of peers as if our child’s feelings were also disabled.

• Church members who look at us with disdain so that we find it hard to worship with an upheld heart.

• Neighbors who chase our child away from their homes with a garden hose.

• Professionals who talk in front of our child as if our child is not there.

We are sorry that kitten died such a horrific death.  We are horrified for our child who will be haunted by the inability to make a safe choice.

• People want happy endings and perfect experiences. 

Many have stepped forward accepting our child as also one of ‘theirs’. . .

• People who struggle to help our child.

• Teachers who open our child up to healthy expression.

• Neighbors who say, ‘We can’t do foster or adoptive care. We can support those who do.”

• People in schools and day care who figure out how to work with our child.

• Professionals who alter the rules to ease our child’s fears.

• Children who reach out and offer to be our child’s friend.

• Gentle arms to embrace us as we struggle to parent.

We are grateful for those who help and who learn the ‘whole’ story so they ‘do no harm.’ Your love and compassion demonstrates you understand the responsibilities of living in a free and democratic society.

Help support foster and foster-adoptive parents who take responsibility to make a difference in a child’s life. There are currently only 142,000 non-relative licensed foster homes and over 588,000 children in foster care. Many children are special needs – older than five, sibling groups or have medical, emotional or behavioral needs.

There are opportunities for you to make a difference. New families are desperately needed. The number of licensed, certified and approved family foster homes in the U.S. continues to decline, while more children need families – single and partnered.  Over 134,000 American children are waiting to be adopted from our foster care system.

Over 200,000 American children have been adopted (1995-2002) from public child welfare agencies to families who have decided to make a life-long commitment of care and nurturing to a child with special needs, accepting the challenges the child brings to their homes and community.  (Figures from US Children’s Bureau)

We admire and are grateful to citizens who give our nation’s special children homes and families. We admire that you withstand ridicule and disdain to continue to love innocent children who are the responsibility of all Americans.

It takes a village to support the mom and/or dad who commits to care for a special child, but it takes a mom and/or dad to raise the child.  OUR child writes. “Mom, just tell them that kids need a family to love them forever, not just watch over them until they grow up.”

Hats off to front line heroes – our foster and adoptive special needs homes. Together we can make a difference.

Love from special needs foster-adoption mothers
Jodee Kulp, editor
Annie Wyrte & Kris Gordon,