Today's article is from my soon to be released novel Power and Circumstance.  My heroine Celia wrote an article for her blog on the importance of professionals in the human services field who do their job well. 

Dear Caregivers,

What a difference a professional who “gets it” can make in our lives.  Today’s visit with Kyle turned into a joy and blessing.  Apparently, Kyle’s new probation officer had a serious talk with Kyle on the way down here because Kyle said a few things I’ve never heard before.  I doubt that they came from his counseling sessions or his own damaged brain.

“Mum, I’m an adult now.  I can take my father for a walk around the farm.  I can help him get dressed.”  Oh how I love this dutiful, helpful son!  I know today may never happen again, but I am so thankful to have spent a day with the person Kyle could have been!!!

When it was time for Kevin’s nap, Kyle said, “What needs to be done in the gardens?  They’re not ready for summer yet.  Can’t you work with that boot on your foot?”

Kyle did some hauling and shoveling.  Next, we got the bean trellises up then we tied up more peas.  We got the squash bed ready, and we planted a whole row of dahlias.  I was a little surprised that Kyle remembered how to do the farm chores. I will get my farm planted on time.  Praise God!

Kyle even thanked me for making oven fried chicken for dinner and remembered when he burned down the chicken house. “Boy was I scared, especially when the gas cans blew up.  I thought you’d kill me for sure.” Kyle stopped in his memories and stared into his plate while pushing the food around.  He looked up and grinned.  “You didn’t kill me.  You just looked at me and started to cry.  I’d rather have been sent to my room.”

I guess the point of this ramble is that the right professional can make a huge difference.  If one therapist isn’t right, find another.  If your doctors make you feel like a failure find another.  This probation officer knew how to bring out the best in Kyle.  Surely, there must be other professionals out there who know how to encourage and bring out the best in others. I wish we could find someone willing to train volunteers and respite workers in how to bring out the best in our loved ones.

Hang in there.  Great days happen.

Celia Jones McKinsey 

Fetal Alcohol Syndrome Family Resource Institute.  By Delinda McCann

I see in the news that some doctors and universities are finally getting around to replicating some of the FAS*FRI research, so I thought it would be a good idea to talk about who we were and what our research project discovered.

The research team consisted primarily of Jocie DeVries, Ann Waller M Ed, Vicki McKinney, Linda LaFever, Ken Dunning MS, Karen Reep MS, and Delinda McCann MA.  Our advisory board contained Sterling Clarren MD, Ann Streisguth PhD. Ed Riley PhD, and Larry Byrd PhD.  Over the years, many people came and went on the advisory board and on the research team.  Those I’ve mentioned were the people who worked on the project over most of its life.  Our primary funding was from the Washington State Department of Alcohol and Substance abuse.  We had funding from other state agencies and from non-profits for small specific projects.  The goal of the funding agencies was to provide support for families living with the carnage of this disability.

Over a period of fourteen years, we talked to over seven thousand families living with a member who had brain damage related to prenatal exposure to alcohol.  We asked questions about their diagnosis, IQ, who the individual was living with, success in school, biggest issues, medications, and what strategies worked to keep the family functional.

One of the first glaring tidbits of information we gleaned is that not all people with FAS have a low IQ. Dr. Sterling Clarren said that the highest IQ for someone with FAS they found at the University of Washington clinic was 120.  We had several youth with IQ’s in the near-gifted range who were diagnosed with full Fetal Alcohol Syndrome.  We had many more individuals who had IQs in the normal range.  Our sample of seven thousand eventually developed a somewhat bell shaped curve with a slight skew toward the lower IQ and cutting off at 120.  By far the largest percentage of our population had IQs in the normal range.

Despite the huge variation in intelligence levels, all our population had common behavioral characteristics.  Thus we set out to document what made our children with FAS behave the same despite their obvious differences in intelligence.   Dr. Ed Riley and Dr. Ann Streisguth helped us understand the commonalities in behavior through their research using MRI to discover a distinctive pattern of brain damage related to alcohol exposure.  We were on the right track with our explorations.

Ann Streisguth’s research on all the characteristics associated with the disability gave us the parameters we needed to focus on the characteristics common to everybody who has the disability.  Other researchers are currently replicating this work. 

We quickly eliminated those items on Dr. Streisguth’s list that only sub-groups of individuals displayed in order find the Core Behavioral Characteristics of Fetal Alcohol Syndrome.  Eventually, we were able to work with Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum to develop the BeST, a screening tool for Fetal Alcohol System.  Dr. Andrew’s screening tool has been standardized and is available to clinics and school districts.  Other researchers are now replicating Dr. Andrews work is currently being replicated by other researchers.

Because we were able to follow some of our population for fourteen years and because we had individuals between the ages of 3 months and 40 years in the study, we were able to record the strategies that worked for each age group.  We published these findings in FASTimes, a newsletter funded by the state Department of Alcohol and Substance abuse to help families have positive outcomes while living with the disability.  Some of our work was published in Iceberg, a University of Washington publication.

The single biggest problem for our kids came from the public school system.  Few schools understood how to teach someone with FAS.  They still don’t.  My daughter’s teachers wanted to use the same materials for her that were used with kids with Down Syndrome, which is about the polar opposite of FAS.  Our research team ended up spending many volunteer hours in Individualized Education Plan meetings.  Some parents chose to home-school and were much happier than those battling stubborn school districts.

Among the plethora of findings from such a large long-term study we had many tidbits of interesting data.  Most of the people with FAS were living in foster, adoptive or kinship homes.  We did have a small, but stable group of birth families in our study.  Linda LaFever was a master at working with birth families.  We found a sub-group with digestive disorders.  We didn’t come across a medication that worked for everybody.  We found multiple generations from grandmother to mother to baby all with FAS. 

The multiple generation issue was so prominent that we developed the objective for our population of stopping FAS with this generation.  Among those we’ve followed, we were successful in preventing FAS in the next generation.

Obviously, considering the size and length of the study, we have much more information than can be covered here.  I do look forward to seeing the university research community replicate our work. 

My last thought is that we never found a safe level of alcohol consumption during pregnancy.  The rule remains:  Women of childbearing years who consume alcohol must be on a reliable form of birth control.


Top Photo:  Seated Vicki McKinney, Delinda McCann, Jocie DeVries, Linda LaFever.  Back Row:  Dot Workman, Susan Bradley


For more information including copies of the FASTimes and the BeST screening tool visit http://www.fetalalcoholsyndrome.org/index.php

One evening shortly after I’d started kindergarten, I was under the dining table coloring a picture of a jack-o-lantern when the phone rang.  After getting in trouble for talking to Aunt Charlotte on the phone, I ignored it. When Daddy answered, I listened to his side of the conversation.  “Well yes, she is tired most of the time now.  But she’s fine.”

Pause

 “Oh no.  That won’t be necessary.”

Pause.

“We can manage.  The girls are old enough to help now, and Rosie is in school half-days.  This isn’t really necessary.”

Pause.

Daddy sat down in a dining chair.  I heard him sigh before he asked, “When do you plan to arrive?”

Pause.

“Oh no!  That’s too far for you to drive alone!”

Pause.

“I don’t like this.  It’s too far!  If you feel you must come, fly.”

Pause.

“Well okay then.  I’ll worry constantly for the four days you’re on the road.”  Daddy hung up, went into the living room and sat down beside Mom who was reading a book.  I followed and slipped under the piano to see what Mom would say.

When Daddy told Mom Aunt Charlotte was coming to help her, Mom burst into tears and ran upstairs.  Daddy shuffled off toward the TV room, which would soon be Aunt Charlotte’s bedroom.  Again he made his announcement. 

Devon jumped to his feet.  His face and ears turned beet red and he screamed.  “No! I hate her.  She’s nosey and bossy.”  He shoved me out of his way as he ran from the room and up the stairs.

Marissa snickered, “He’s afraid she’ll scare off his new girlfriend.”

Carolyn snickered and rolled her eyes and both of my sisters burst into giggles.

I tucked this new piece of information about a real, live girlfriend away for use at school.  I could casually roll my eyes and say my brother has a girlfriend. That’s better news than Sheila’s dad’s new car.

School was tough because my best friend Ann Stanaway could read.  I pretended to know how to read, too.  As I thought about impressing the other girls at school with my brother’s girlfriend, I remembered Glenda saying her Aunt Bea was staying to help because her mother was going to have a baby. 

The next day at school, I cornered Glenda.  “How is your mother?”

“The doctor says she must to put her feet up and can’t pick up anything more than ten pounds, so she can’t lift Jason.”

I considered these comments.  “My Aunt Charlotte is coming to help my mom.”

“Is she going to have a baby?”

Despite the fact that we had our heads together whispering, the word “baby” attracted a crowd of other girls including Ann Stanaway.  I tried for discretion.  “I’m not supposed to talk about that.”

The other girls nodded sagely, then Patty, who was a little slow asked, “How did your mother get a baby?”

“I could hear the room behind us grow silent.”

Again I fell back on the laws of propriety, “I’m not supposed to talk about that.”

Glenda who had more information answered, “The father puts the baby in the mother.”

Patty who had no concept that we don’t talk about some things persisted, “How does the father put the baby in the mother?”

I could tell that Glenda had reached the limit of her knowledge when she fell back on propriety, “Well, we aren’t supposed to talk about that!”

“French kissing, where the father sticks his tongue in the mothers mouth.”  Tommy announced in firm tones of complete confidence. 

I turned to see that the boys had snuck up behind us.  Esau, elaborated, “Or sometimes it happens if the father just spits in the mothers mouth, or they drink out of the same cup.”

I remembered Mom tasting Daddy’s coffee and felt my eyes grow rounder.

At this moment, Mrs. White, our teacher came into the room, “What are you children doing?”

“Rosemary’s Aunt is coming to visit.”  Glenda explained.  Ten other heads nodded.

Lamely, I added, “She’s driving up one-oh-one from San Francisco.  It’s a long way.”

Mrs. White’s eyes narrowed as she gave us The Look that said she didn’t believe us so we slunk to our seats silently in awe of Tommy and Esau’s vast knowledge.

Some time ago, I began to suspect that very few people have a great purpose for their life, but I quickly came to accept the notion that perhaps we define purpose wrong.  Perhaps the purpose of our lives is to live joyfully and peacefully.

The message we hear from our education and business sectors is that purpose has something to do with career or perhaps power.  We assume our purpose is to take our sword and shield and ride into battle.  What if our purpose is to enjoy a good dinner?  What if our purpose is to play a game with our children? What if it is to watch the sun go down?

Now in a sense, I’ve been a warrior—working with at-risk youth and advocating for services for people with disabilities.  Did any of this make a difference?  I guess it did for the few who got services.  I’m sure it didn’t change the policies of those I called morally bankrupt.

So after all my hard work, evil runs rampant like a firestorm.  At-risk youth take guns into schools and shoot other students.  Justice for those who come into this world with disabilities caused by industrial toxins has fled behind walls of lack of funding.  I see other warriors throwing themselves against the wall to little effect.  People continue to work hard for long hours and live in grinding poverty that destroys the soul.

So we are surrounded by injustice that we cannot defeat.  How do we then find purpose for our lives?  Is there a secret method for turning our backs on injustice and rejecting the lies about purpose?  

I do have an image in the back of my mind that seems to contain a clue to living with purpose.  When dealing with the school district for my foster daughter, I did eventually turn my back on others’ sense of right and started my own school using home-school laws.  My school became a much gentler experience for our children.  While other students labored in a classroom, our children went bicycle riding or played with their horses. 

Somewhere in the image of sitting in the sun with a few other mothers while our children practiced riding in a ring with their horses, I think I find the answer to my questions about purpose. 

Purpose is much gentler than the world would have us believe.  It involves enjoying life without doing harm to others.  It is about a modest but adequate lifestyle.  How do we get there from here?  I don’t know.  I see what needs to change, but I also see the obstacles.

Do we still need those warriors who throw themselves against the wall of injustice? Do they make a difference?  Do they help contain some of the evil?  I’m afraid that we do need them for a while.  Now, I am back to the question of how to live with the gentle purpose of loving one another when the forces of evil are actively trying to deny the common person the resources necessary to live a modest but adequate lifestyle.

In the end, I must conclude that while our purpose is to sit in the sun, watch our children play and enjoy the gifts of the world, I very much fear that battling injustice is a vocation.  The trick is to keep one’s eye on the true purpose of life without being distracted by the vocation.  I’m not very good at separating purpose from vocation.  I still feel the need to hack away at injustice to the point that I forget to sit in the sun and listen to the birds singing in the trees.

My old classmate, Chris, sent an e-mail announcing plans for a class reunion.  To respect the privacy of my classmates, I won’t tell you which year this is.  It’s been awhile.  So, Chris requested that on May twenty-eighth, we should all take a selfie and send it to him.  He explained that we graduated on a May twenty-eighth.  I’m glad he explained, because I had no idea.

When I got the e-mail I looked at my reflection on my computer screen and thought, ”Not bad.”  My hair looked particularly nice since it was curling into a sweet flip much as it did in my senior picture.  I debated snapping the selfie then and there, but that would detract from the meaning and fun of the planned picture gallery.  Yeah, it would detract from the hilarity of the gallery had I taken the picture when my hair looked good. 

On the night of May twenty-seventh, bad hair fairies snuck into my bedroom and stripped all the body from my hair.  I woke up with my hair flying in every direction and the curl turned to frizz.  The best I could do for my selfie was to pull most of my hair back in a ponytail at the nape of my neck.  Okay—not too bad.  My face still has some bone structure, but the bad hair fairies must have brought along their friends, the puffy-bags fairies.

Ha! Having been a disabilities advocate for way too many years, I am disciplined to work with what I have in front of me, so I soldiered on.  I assessed my assets.  I still have all my teeth and…well, I mentioned the bone structure, and I have all my teeth. My other asset is that I own a fairly good camera. 

Finally, I settled down to take the photo itself.  I knew the technical basics of taking a selfie, but had never actually taken one.  The first batch of photos revealed that I still had wispy hairs standing on end, and I looked as if Jabba the hutt was coming for me.  Okay, I didn’t need to recoil from the camera, and this was not a terrifying experiment.

Once I rejected the Jabba-the-hutt-is-coming-for-me photos, I had a selection of unacceptable options.  So I tried again.  This time they were better.  I did like the one where the camera magnified my right eye in a manner reminiscent of Mad Eye Moony.  I rejected those where the sunlight seemed to magnify my mustache--time for a wax.

Keeping the Mad Eye Moony picture as a backup.  I took another batch.  When I downloaded these I could see a definite improvement in my photographic skills, but no.  Well, I did have one I rather liked that would make a decent professional-type photo if you go for the this-woman-is-going-to-do-unspeakable-things-to-your-body-if-you-don’t-give-this-kid-services look.  I have to save that picture—so mean, but dignified. 

Finally, I broke the project down into the basic elements of where to hold the camera, where to focus my eyes, and what angle would minimize the signs of my stroke.  Once I tackled the problem in a more scientific fashion, I made rapid progress toward a decent photo. 

Eventually, I decided I needed to work harder on my pleasant thoughts to get the right expression.  Fantasies of going to my class reunion as a best selling author produced a nice photo, but it looked a little stuck-up.  Thoughts of walking though my gardens reflected the pathos of weeds in the garden.  Remembering that I still have all my teeth, I smiled thinking about having a party with all my friends, which produced a nice but somewhat stilted photo.  Finally, after taking one hundred and twenty-two shots, I started getting a little silly.  I thought about Vladimir Putin without his shirt.  This produced a merry, flirtatious photo with a generous display of my own teeth and a twinkle in my eye.  So thus it was, that I sent off Vladimir-Putin-without-his-shirt to be my picture for the gallery at my class reunion.