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Fetal Alcohol Syndrome Advocacy

It is the Behavior By Delinda McCann

8/31/2015

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September ninth is Fetal Alcohol Syndrome Awareness day so I will be writing a couple articles on that topic.  Fetal Alcohol Syndrome (FAS) is a specific medical diagnosis for fairly disruptive symptoms that occur when a woman has consumed alcohol while pregnant.  The facial features that are necessary to get a diagnosis form in the third week of gestation, some women may not know they are pregnant at this point.  Because the diagnosis is so dependant on the facial features that have no relationship to the overall amount of damage to the child, researchers and advocates like to talk about Fetal Alcohol Spectrum Disorder (FASD) as the more descriptive term

The amount and type of damage done when a woman drinks during pregnancy depends greatly on when she drank and how her body and the baby’s body process alcohol.  If a woman drinks while pregnant, the alcohol will disrupt whatever is happening while the alcohol is in the baby’s body.  The disruption may not be easily measurable later in life, but it will happen.  The project I worked on developed a fairly sensitive phenotype for identifying the damage. 

Remember, there is no magic that will alter the biochemistry between alcohol and the developing baby, and the damage may occur before the mother suspects that she is pregnant.  For this reason, my colleagues and I developed the slogan “Women of childbearing years who drink alcohol must be on a reliable form of birth control.” 

My project with FAS was working with the team at the Fetal Alcohol Syndrome Family Resource Institute.  Our main focus was to help connect families to the resources they needed.  When we started, nobody had any idea what resources families needed, so we set out to define what families need at each developmental stage.  Over the fourteen years we worked on this project, we interviewed roughly seven thousand families living in the US and Canada. 

Out of this project, we discovered some common behaviors among those with the disability that were present whatever the IQ and whether or not the facial features were present.  We came to recognize the behaviors very early in the project, which led to one of our funny stories.

Dr. Sterling Clarren was the primary researcher on FAS at the University of Washington.  He is quite internationally famous in the field.  For his research, he needed patients with the disability.  He had some silly notion that he wanted to be the one to diagnose his patients.  We were quite willing to let him do the official diagnosis, but when we sent someone to him, we instructed our clients on how to make up a packet of the information they would need to get a diagnosis.  Finally, Dr. Clarren caught up with us at a state function and complained that he was giving everybody we sent to him a diagnosis, and admonished us to stop screening people.  We really were not aware that we were screening people, but the incident taught us that we were seeing a set of common behaviors unique to FASD.  Eventually, Dr. Glenna Andrews, a specialist in agenesis of the corpus callosum, used our behavioral profile to develop a behavioral phenotype for FAS that accurately (.01 level) identifies FASD and separates it from other causes of agenesis of the corpus callosum.

Those of us who have lived and worked with individuals with FASD recognize the phenotype easily.  My daughter having grown up in our home with a foster sister who had FAS often babysat for other families raising kids prenatally exposed to alcohol.  As an adult, she offered to stay with a friend’s daughter while the couple celebrated their wedding anniversary.  She assumed that the reason the couple couldn’t get a sitter was that they were new in town and didn’t know anybody.  She says she quickly realized she was relating to this child as if the child had alcohol related brain damage.  This was confusing because these parents didn’t drink.  When the couple arrived home Melanie didn’t say anything about their daughter’s behavior and assured them everything was fine.  The couple expressed their relief that all had gone well and explained that their daughter was really their niece who they adopted because her mother had alcohol problems.  They ascribed her behaviors to adoption issues.  Melanie left their home thinking, “That was it.”

Recognizing the unique “don’t get it” behaviors of FASD is important because it gives us an idea of the pervasiveness of this disability.  Remember if the mother does not drink during the third week of gestation her child will not have the facial features even if she stays drunk for the rest of the pregnancy, so official numbers are low when facial features are used to count cases.  The exposed child may not have the facial features to get a FAS diagnosis, but they will certainly have the behavioral features.  Those behavioral features will be present even if mom drank socially during pregnancy. 

Ann Streisguth PhD, the mother of FAS research, demonstrated the effect of social drinking on the developing baby by identifying a characteristic pattern of reading, spelling and math scores.  With our recognition of the behavioral phenotype, we could identify which students would have the characteristic test scores, which offered us another validation that we did have a behavioral phenotype.

Now, as I try not to be involved in the tragic world of FASD, it still jumps out at me through the media. Sometimes, I see stories about someone who just doesn’t get it.  Sometimes, someone who is really successful in one area of their life attracts my attention, because despite their success, their ethics are messed up.  They don’t get it.  I still find that our phenotype allows me to identify people who will never understand the consequences of their actions, who are easily manipulated and will follow the moral path of those around them despite their professed belief in a different moral system.  Our behavioral phenotype is spot on and tells us that this disability is far more pervasive than the official numbers indicate.   I’ll cover that topic next week.

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Words: Socialism vs Serviceism  By Delinda McCann

8/25/2015

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Words are our means to describe our world and our systems of relating to each other.  It is amazing how much emotion we can ascribe to certain words.  I don’t think I can bring myself to type the “F” word.  Occasionally, one of the characters in one of my novels says a swear word, and I can type that.  I don’t think they ever say the “F” word, probably because I won’t type it if they do. 

Words are just words, however.  We really need to stop and think about what words mean and why we react to them as we do.  I think I see a difference between the “F” word, which is often used to communicate disrespect of other people while the “Sh” word is used to communicate frustration and has actually flown out of my mouth on a few occasions, usually at college football games.

Socialism and socialist are two boring words that have come to hold more emotional meaning for people than the dictionary definitions of these words would indicate.  These are, after all, words referring to economics, which was a rather boring subject when I was in college.  I did take an actual economics class plus classes in economics as it relates to social systems.  I’ve read Adam Smith for some class or another, maybe in grad school.

I really don’t get why people get so upset over these words, but since those who are upset use the words wrong and have generally muddled logical processes when using them, I assume the poor dears are confused. Since those using the socialism/socialist words wrong frequently use the “Sh” and “F” words at the same time, I assume these folks are frustrated and angry.  Let me explain the words, and what I think is happening.

Socialism is an economic term described by Karl Marx.  He also offered a definition of Capitalism so don’t have hysterics over a word defined by Marx.  He defined it as an economic system in which the government (actually the people in a collective) own everything in common, particularly the means of production.  In practice, this has resulted in the government owning property and business and there is little private property.  This hasn’t worked well for the countries that have attempted to practice it.  I suspect it is the failure of this economic system that is the source of the fear and anger associated with the word socialism. 

What I call Modern Socialism as practiced by many countries is when the government owns stock in a publically traded corporation.  We see this in most modern European countries.  This seems to work as long as the government does not own the controlling number of shares.  Currently, Russia owns controlling shares in Gazprom, but it is a globally traded corporation.  We’ll have to wait and see how that works for Gazprom.  Currently, political pressure against the Russian government is causing repercussions for the corporation.  The influence of politics on the corporation is one reason for keeping the number of government controlled shares to a minority.

Now, we have an emerging definition of Socialism that is totally unrelated to the two traditional definitions.  I think some people I’ve encountered consider this definition in the same category as the “Sh” and “F” words, which is confusing to me.  Since Bernie Sanders is using this definition in his campaign, I will grudgingly admit to its marginal validity while wishing such people could come up with a better word for what they want to express. 

The third and alternate definition of the word socialism can be stated something like, all government money comes from the people and exists to benefit of all the people.  This definition has nothing to do with the traditional definition about government ownership.  Generally, using tax money to provide services has worked well for this country.  We built a freeway system, explored space, provided care for veterans, and cared for our mentally ill and disabled.  Politically, we have been moving away from practicing this definition of socialism.

I wish people would come up with a better term than socialism, which is confusing.  Perhaps, we could try taxism.  Taxism is a good concept to indicate that government money comes from the people.  But then, people hate taxes so the word would have negative connotations. 

What about Serviceism to indicate a system where the government uses tax money to provide services?  I like Serviceism as a term for the government building roads and bridges, caring for the sick and disabled, exploring new worlds and boldly going….  Well, you get the idea. 

The reason I’d like a better word for the emerging definition of socialism is that people get so muddled in their thinking.  When Sanders says he wants to eliminate or reduce student debt, the clueless listener thinks this is socialism and socialism is bad because the Russian economy collapsed under socialism and people lived in poverty under Chinese socialism.  Facepalm time.  This reasoning is comparing apples to oranges and concluding that the banana is rotten.

Remember that government ownership of property or stock in businesses is not the same as the government using tax money to provide services to tax payers.  These are polar opposite concepts about who owns what. In traditional socialism the government owns everything.  In the emerging definition the government owns nothing-not even the money they collect through taxes.  In the emerging definition, tax money must be returned to the people in the form of services. 

I hope this helps my readers understand that socialism by any definition is not the same as the “Sh” and “F” words.  Please be aware that this is one of those words that is being usurped to mean something totally different from its original meaning.  The failures of the past are not from the same source as the concepts in use today.  Finally, It is time to step-back and realize that all economic theories are concepts.  We can change economic systems just as easily as we change the meaning of words.

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Musings on Weddings By Delinda McCann

8/18/2015

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On Sunday, I hosted a wedding shower for my niece.  I enjoyed the opportunity despite all the work of cooking and planning.  I love weddings and often feature them in my novels partially because I provide flowers for several weddings a year and get to witness some of the behind-the-scenes drama.  So, what is it about weddings that fascinates me?

Despite some claims, weddings are cultural rituals rather than religious ones.  Most cultures from the simple to the complex have over the eons had some rules and rituals around marriage.  The rituals may include the gifting of goats or geese.  Rituals may include the bride being the center of attention for weeks.  The leader of the clan or tribe may be the only one who decides who may marry whom.

Frequently, throughout the years, weddings have involved dancing and feasting. 

The ceremonies around the wedding give the two families involved in the wedding an opportunity to get to know each other.  At my niece’s shower, I noticed that the mother of the groom (MOG) spent much of her time talking.  She was the only representative of her family present, so I’m afraid, we quizzed her about many details of her life.  Since I’d done all the cooking for the shower, I discussed her possible dietary limitations with her.  Talk about getting into the intimate details of her life!  We eventually got a pretty good picture of her life and how she will relate to my niece.  She learned that our family intends to be supportive of her son and that we value him.  I hope she learned that we are respectable, caring people.

Being a social scientist, I see many meanings in the rites and rituals surrounding marriage.  I like to call these rites and rituals, heart knowledge.  They constitute a kinesthetic learning experience for those who attend the wedding.  The guest must dress in ritual clothes, buy a gift, actually attend the ceremony, feast, and meet people.  One hopes that this exercise at least helps the guest remember the name of their friend or relative’s new spouse.  More than learning a name, the guest hopefully learns to accept their friend’s new spouse as a member of their family or friendship group.

Communicating to the community that two people are now to be treated differently than they were as singles is a subtle, but important, aspect of the marriage rituals.  I’ve known enough hopeful third parties who needed to grieve the fact that the person they hoped would return their love is now beyond their reach and that they need to respect the new bond.  Most, parents recognize the shift in responsibility for who takes care of their child after the marriage.  It is to be hoped that most parents will recognize that the new spouse comes first in their child’s life.  I admit that many parents have trouble giving up their position as the most important person in their child’s life.  The rituals, ceremonies and public display help to make that shift and provide some social pressure for the parent to let go of their now-adult child.

Marriage has been and still is very much a financial relationship.  Our tax laws treat marriage differently from cohabitation.  For centuries and in many, many cultures, communities recognize the change in financial status of a married couple through the giving of gifts.  Now, both my niece and her fiancé have good jobs, but still, the financial burden of setting up a household is huge.  The gifts help.  I am still using some of my wedding gifts after fifty years of marriage.  I hope my niece will receive some gifts that are not only useful but remind her for the rest of her life of how people cared for her.

In Western cultures, the planning and decision making around the wedding are a good opportunity for the prospective couple to practice problem solving and responding to each other under stress.  Hopefully, they will have the support of wise counselors who can teach them appropriate techniques for making decisions and responding to stress.  It is a learning time. 

Finally, weddings represent a great time to watch people when they are too distracted to present their social faces to their community.  My poor brother tried to sound gracious as he explained it would take him five days to access his 401 for the money for the caterer.  Knowing my brother, he did very well not to sweat or whine over spending money as he explained that he needed to know when he must pay the bills.  Little details like this are true humor and will provide me with a chuckle for many years to come.  My niece has behaved with grace-under-fire as she manages to navigate between her relatives and the demands of planning a large event.  My respect for her is justly founded.  Because of demands in my own life, I was a little late sending the invitations to the shower.  The responses I received from people who had not volunteered to undertake this responsibility were eye opening and explained a few things that I’d wondered about before. 

My family hasn’t gotten to the rehearsal or the actual wedding, yet.  I wonder if I should tell my brother who it is who is responsible for feeding all of us after the rehearsal.  All in all, I look forward to learning more about people while capturing a few choice memories as this whole wedding unfolds.  The value of weddings as life events must not be under estimated on any level.  Wedding rituals give life its rich tapestry and promote bonding as well as providing opportunities to grow and learn.

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Two sides of Washington State by Delinda McCann

8/12/2015

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I’m late with my blog this week because I have been traveling abroad.  We visited a foreign country.  Well, it seemed like a foreign country.  We went to visit my cousins in Central Washington.  I know that doesn’t sound too foreign, but just keep reading. 

We stayed in a motel in Wenatchee before catching the Lady of the Lake for a boat ride up Lake Chelan.  We were a little disoriented by the dry farm country around us, short buildings, short trees, and bare mountainsides.  Dinner had been good enough, but obviously, the entrée had been purchased frozen and defrosted for our fine dining experience.  Finally, Hubby decided to watch a little TV.  He surfed through car ads and local little league news to find Gilligan’s Island.  Folks, those people in Central Washington are still watching Gilligan’s Island!  It is most certainly a foreign country.

Driving up the Columbia River to Chelan is beautiful, but not in a manner we are accustomed to on our side of the state.  We passed miles of orchards.  This is farming country.  Occasionally we passed a dam on the Columbia.  This is power-generating country.  We saw horses and cattle, but not that many houses or people.  That is the way it is in Central Washington.  They really do have a different lifestyle than us, suburban or urbanites in the Seattle area. 

I call my one-point-three acre farm a small farm.  In Central Washington, a small farm might be three hundred and fifty acres.  Much of that acreage might be rugged foothills suitable for a little grazing and nothing else.

On our trip up Lake Chelan to Stehekin Valley Ranch we watched as the south shore mountains smoldered with a forest fire.  The pine trees and brush that managed to cling to the hillsides were gone or still smoking.  Central Washington has massive forest fires every summer.

On the lake the hills are inaccessible except by helicopter as they fall straight down into the lake and continue down for one thousand four hundred-eighty some feet.  All together the long narrow lake was a bit eerie in the early morning with few people out and the smoldering cliffs above us.

The locals at the ranch greeted us in their plaid shirts and cowboy hats.  We’d seen enough plaid shirts and cowboy hats on this trip to know this wasn’t too outlandish and might even seem normal to them. 

Curiously, in this area with low-density population we met many of our fellow Seattleites and people from Portland, too.  Central Washington may not boast a large population, but the area is resort country as well as farming and generating electricity.  They cater to a part-time population of tourists, just like any of the tourist meccas I’ve visited in Europe, or Mexico, or the South Pacific. 

To me, it is somewhat surprising that I can drive two hours from my home and encounter a culture so different from that which surrounds my home.  There, the businesses cater to the needs of the farm rather than the office.  I didn’t see a Starbucks, although I assume there must be some.  Not seeing a Starbucks is a bit of a shock for someone from Seattle. The fires and smoke that my cousins took in stride horrified me. 

I’ve long known that the politics of the rural two-thirds of our state are very conservative compared to the western side of the Cascade Mountains.  My cousin told me that Wenachee is so conservative that they often do not have a Democrat for a candidate in local elections.  I understand that the concerns of the farmer are different from the concerns of those in the cities.  Those differences in needs and philosophy are the reason behind having legislative districts to give everybody a voice in government that reflects their concerns. 

After experiencing all the differences in culture, industry, and population density in Central Washington, I was shocked to discover that Wenatchee, this bastion of farming and conservatism is in the same legislative district as a community bordering my own urban district two hours away.  I can see no reason for a legislative district to extend to the other side of the Cascade Mountains other than to give one political party more power in government through gerrymandering. 

The consequences of this artificial configuration is that it created a minority who have urban needs in a rural governed district.  Also, in this case, it allows a man whom his neighbors cannot respect to be elected to the Federal Legislature by people who do not know his reputation among his neighbors.

I know that being governed by the majority of the population that live on the western side of the Cascade Mountains is frustrating for those who live on the east side.  Being farm country, they do not have the problems with unemployment that the west side has.  They are concerned about issues of property taxes and who will inherit the farm.  They know their neighbors and their neighbor’s business.  They seem to think of Seattle as another country and have occasionally attempted to secede from the state and take Northern Idaho with them.  I believe that all people deserve a voice in government.  For this reason I believe that manipulating legislative districting to benefit one political party as has happened between these two sides of the state disrespects the voice of the people and disrupts the integrity of the government.

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Autism: Some Moments in being a Caregiver By Delinda McCann

8/3/2015

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I used to babysit for a friend whose daughter had very severe autism.  I think I was the first person to start saying, “This girl is smart.”

She and I had a number of battles while I was taking care of her.  Mostly, we battled over chocolate.  She wanted mine and would find it wherever I hid it.  I didn’t want to share my chocolate and rationalized that she shouldn’t eat that much chocolate before dinner.  The hide and seek war with the chocolate went on for several years. 

My young friend had a number of autistic phobias.  One of her more peculiar phobias was over rolls of toilet paper.  She acted okay with the stuff on the spindle, but she would screech and shriek and dance away if she came across toilet paper rolls on the dining table, in a closet, or sitting in the hall.

Now, sometimes I am a very nasty person.  I get cross, or competitive and insist on my own way.  So, one afternoon when my friend needed some time out, and I had her daughter, I got tired of the chocolate hide and seek.  That kid could track it down by smell wherever I hid it.  We were short of money at the time, so I ate my chocolate sparingly just for a little occasional treat.  Well, Miss I’m-Afraid-of-Toilet-Paper-Rolls ate half of my precious chocolate.  Being very evil, I took my chocolate away from her again, put it on a high shelf and stashed a four-pack of TP in front of it to stand guard.

Well, as soon as I got busy with something, I heard a shriek from the kitchen and smiled knowing what happened.  She’d found my chocolate.  This young woman was non-verbal, but for this occasion she tracked me down and had a great deal to say in her own language while shaking my TP four-pack at me.  I strongly suspect she cussed me out good before she threw the package of TP on the floor and went back for the rest of my chocolate.

I got a good laugh over how Miss-Chocolate-Thief could control her phobia under the right circumstances.  She saw me laughing and had to smirk over the humor of the situation. 

Curiously, the next day her mother called me to tell me how wonderful her daughter had been all evening,  “She helped me set the table for dinner and was so focused.”  I confessed to protecting my chocolate with the four-pack.  We concluded that the structure and solid limits along with me not buying into her phobias other than using them to set limits comforted this young woman.

Somewhere in my education, a professor said something about not validating unreasonable fears or ideas.  She said we were not supposed to look for the monsters under the bed because it validated the idea that monsters could be there.  I used this bit of wisdom when dealing with special needs children.

My young autistic friend had a phobia over dogs.  She’d do her shrieking, crying, running away routine whenever she saw a dog.  She’d learned to sign “bite”.  As she got older, she started signing bite every time she saw a dog.  Most people would reassure her that they wouldn’t let the dog bite her, or that the dog wouldn’t bite.  None of the reassurances helped with the phobia, which limited where her family could go if there might be dogs.

I love dogs and usually life with one or two or three.  For some time, I kept my dogs in the kennel when Miss-I’m-Afraid-of-Dogs came to visit.  Occasionally, she would encounter my toy poodle and shriek and sign “bite”.   One day I looked at this young woman who’d been adopted from Korea.  She was shrieking and signing, “bite”.

I answered, “No.  I know you are from Korea and people there eat dogs, but that is my dog, my friend, and you cannot eat him.”

Stunned, the young woman looked at me, and a look of glee came over her face as she looked at the sleeping dog and signed, “bite”.

I repeated my admonition that she could not eat my dog.  I repeated this admonition for a year or eighteen months before she got her very own very gentle special dog.  She occasionally could be found on the sofa with her head on her dog.  How thankful we all were that she could share in one of life’s richest joys--having a doggy friend.

Too often we get wound up in the situation and forget to think outside the box or bring humor into a situation that we define as serious.  We forget that our special needs friends need silliness and humor, too.  In the case of my young friend, too many saw her disability and not the person with the fantastic sense of humor underneath.  Her sense of humor often set her free to be the person she was created to be.

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    Delinda McCann is a social psychologist, author, avid organic gardener and amateur musician.

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