Realistic Outcomes.- Fetal Alcohol Spectrum Disorders

September ninth was international Fetal Alcohol Spectrum Disorders (FASD) Awareness Day.  We have been using this as an international day of awareness since 1999.  The first year we focused on ringing bells to commemorate the day.  We tried to get the local news media to feature news articles on the disability.  Over the years, we have had a number of activities to draw attention to the disability.   One year Christine Gregoire the governor of Washington State filmed a public service announcement on the dangers of drinking while pregnant.

The media has changed over the past thirteen years.  This year many participants chose to post to Facebook or Twitter.  I posted to both places and started to read through the posts from other advocates as horror swept over me.  The messages focused on the lifelong nature of the disability saying, “People with Fetal Alcohol Spectrum Disorders may need lifelong supports in order to work and maintain relationships.”  I had to wonder, “What are these people thinking?”  No. NO. NO! That is not the norm for individuals with Fetal Alcohol Spectrum Disorders.

Perhaps I have been in the field longer than most of the other advocates.  Perhaps they have not read the long-term studies.  Perhaps they are living in fantasyland.  People with Fetal Alcohol Spectrum Disorders do not have the rosy outcomes the above statement indicates.  I suspect that many advocates hope for the best for the people they love.  Certainly, I know some individuals with FASD who are able to hold down a job and maintain relationships, sort of.  Dr. Ann Streisguth’s long-term studies indicated that some people with the disorder might be able to hold down a job, or maintain family relationships.  She did not find people in her caseload who were doing both.  It is theoretically possible.

The far more common outcome for people with FASD is not so successful.  Most of the young people I met twenty years ago are bumping along with a great deal of support.  Some are in assisted living, which works, sort of.  Some have a great deal of difficulty with drugs and alcohol.  Some are still in prison.  Some live in the community with constant support from aging parents and the government.  Most receive Social Security Disability payments.  Some receive Section 8 housing.  Most receive food stamps.  The government financial support is in addition to being in constant contact with a caregiver who serves as an external brain.

What is it about this disability that causes it to be so devastating?  The answer to that question lies in the nature of the brain damage caused by prenatal exposure to alcohol.  Humans have a small structure in their brains, the corpus callosum, that serves as the main right to left pathway for brain activity.  It connects facts with meaning.  Together with parts of the brain stem, it allows us to learn from cause and effect.  Both of these structures are vulnerable to prenatal exposure to alcohol.  Dr. Ed Riley at the Univ. of California at San Diego was the first to find the characteristic brain damage associated with prenatal exposure to alcohol.  Dr. Streisguth replicated his study.

This characteristic pattern of brain damage produces some predictable behavior problems.  Individuals with FASD cannot learn from their mistakes.  They cannot connect rules to behavior.  They just never develop adult level judgment and reasoning.  Most individuals with FASD possess the sense for safety of a three year-old.  Of course they have adult bodies and people expect them to learn adult responsibility, which is just not going to happen.  With our foster daughter the three-year-old judgment is a life threatening disability.  She absolutely cannot keep herself save around the general public.  She projects vulnerability.  Yes, she has the intellectual capability of working.  She is tired of being sexually exploited because she cannot repel predatory men.  She stays home and lives on the pitiful income the government provides.

There is another aspect of this disability that is very very difficult for people to grasp.  Perhaps some day I will find the magic words to express this better.  Most of the people diagnosed with FASD live life on the margins, receiving public assistance if they are lucky.  Many get free housing and food in prison.  The state pays and pays and pays through the criminal justice and welfare systems for this disability.  The individuals who have the disability pay and pay through heartbreak, abuse, poverty, loneliness and failure for their entire lives.  The industry that produced the product that causes the damage makes wonderful profits.  The liquor industry fought warning labels on their products.  They fight taxes to cover the cost of the damage their product causes.  They reap huge profits without consequences.  Perhaps those with FASD are right actions do not produce consequences—at least not for the liquor industry.  They did for the tobacco industry.  They did for the paint industry.  They do for anybody else who makes a product that causes damage when used in a legal and socially accepted manner.  After many years as an advocate in this field, I am tired of the heartbreak from watching the devastation caused by prenatal exposure to alcohol.  I am sick of the lack of appropriate response from our government and justice communities.

Freedom of Speech vs Freedom

By Delinda McCann Author Lies That Bind

A few weeks ago, several things happened to make me sit and think seriously about our right to free speech.

The first event occured when I decided I must un-friend a former colleague on facebook.  It sounds like a small event, but it troubled me.  The colleague had a habit of posting quotes, quips and cartoons that were demeaning to a certain group of people.  She applauded name-calling, critical-judgmental ideas, and the public use of words that I sent my children to their rooms for using.  The strange part of this event was that I didn’t particularly disagree with her views and values.  I was disgusted with how she expressed those views and values. 

I also felt that by continuing to accept this person’s manner of speaking and example of name-calling and put-downs as humor, I was accepting another issue. Demeaning speech sets a horrid example for our children.  If we can say anything we want even when it infringes on the rights and dignity of others, why cannot our children bully the kid with disabilities?  It makes the bully feel good and powerful. 

But this is the nature of freedom of speech.  My colleague was free to express herself any way she chooses.  If I don’t like it, I can walk away or unfriend her.  The problem is that we don’t always have the option of walking away.

Shortly after my uncomfortable decision to unfriend a colleague, Rep. Akin blessed us with his remarks about legitimate rape and women’s bodies.  Setting aside the insensitivity of his comments and my emotional reaction to his lack of empathy for victims of a crime, his comments about women’s bodies were outright lies.  Some of my friends tried to tell me he was trying to prevent abortions in making these comments.  What?  Does your perceived morality of your cause give you permission to spread lies?  Does the right to free speech include the right to use lies to influence the law of the land?  Does the right to free speech give a lawmaker the right to condone rape if the victim is not beaten within and inch of her life? Is that the free speech that is covered in the constitution?

How do you walk away from a lawmaker whose lies can influence laws that affect the most private parts of our lives and bodies?  Where does the right to free speech end, and violation of the rights of others begin? 

While women of the US were shaking their heads or fists over Rep. Akin, half-way around the world, in Russia a shock-rock band, Pussy Riot was on trial for trespass and exposing their privates in a church.  Many celebrities and the news media jumped on the trial as a freedom of speech issue.  What?  I saw it as a trespass and indecent exposure issue.  I agree with the principle of civil disobedience and have even participated it. However, even in a case of civil disobedience I would give the bystander who is offended by my actions or strongly disagrees with me the right to walk away.

After watching the security video of the Pussy Riot demonstration, it occurred to me that if this group of women had come into my church and performed exactly the same act, in Russian, which nobody would understand, my pastor would call the police, just before he had a major anxiety attack.  The women would be arrested, charged, and, if they did not make a plea-bargain, they would be tried.  Yet, the event was reported and supported as a freedom of speech issue unique to Russia, as if displaying one’s crotch in church was acceptable in “free” countries.  So what about the rule of allowing others to walk away?   In this case it is possible that visitors to the cathedral could cover their children’s eyes and leave the scene of...well…the scene, but the nuns and priests, who work there did not have that option.  Furthermore the bystanders had come to a private place, a sanctuary, where they ought to be able to reasonably expect a crotch-free opportunity to pray.

Freedom of speech is and should be one of our most cherished rights.  The problem with our current cult of free speech is that we allow freedom of expression to overshadow Freedom—with a capital eff.

How do we restore a balance of liberty for everyone?  We need to start thinking and questioning.  Is this person’s speech infringing on someone else’s rights?  Is this the truth?  Would I allow my child to talk that way?  Do others have the freedom to walk away if they disagree with what the speaker is saying or the way in which it is said?    

The abuse of free speech calls for outrage.  It calls for us to walk away or un-friend.  It calls for individuals to not only turn off their TV, but to write to the sponsors of shows that support lies and demeaning speech.  Most of all, it calls for each of us to stop and ask ourselves some serious questions about what we say, and how, and where we say it.  

I have a guest blogger today, Jocie DeVries.  Jocie is the former executive director of the Fetal Alcohol Syndrome Family Resource Institute.  She has published numerous articles on the topic of FASD.  She is an extraordinary advocate for social justice.  I was occasionally amused when I was in state committee meetings to hear of the fear and respect Jocie inspired in the halls of our state capital.  Today she is telling the story of an event that occurred earlier this summer.

****

On July 27 of this year I woke-up to the sight and sound of a strange man leaning in the French door of my bedroom - whispering to my granddaughter, Amanda.  She had been sleeping on a pallet on the floor of my bedroom.  My husband Don and I have five grandchildren and having them come for a sleepover is a special time for pillow fights, ice cream, sharing secrets, telling stories and deep, relaxed sleep. 

But this summer morning some sort of a pervert had opened the screen door from our deck and was whispering to my granddaughter.  Watching him invade the privacy of my bedroom was mind numbing and my first reaction was to try and convince myself that this situation was some sort of a bad dream.  But as reality set in, I realized this man didn’t just stumble into my bedroom.  He went to a lot of trouble to get there.  We do not have windows in our bedroom.  We have French Doors that open out to an enclosed deck.  A deck that I once thought was cozy and perfectly safe.  It is built up and off the ground and is completely surrounded by a three foot, sturdy lattice railing on top of the deck. 

The point is - the deck has no access from the ground.  This man had to jump up on the deck and then crawl over the railing.  It was hot that night so we had the French Doors open, but we weren’t afraid because we had a gun up in the closet and our big dog in the bedroom with us. The most surreal thing about the whole scene was that the dog didn’t whine, growl or bark.  We were incredulous, at some point had this pervert made friends with the dog?

The intruder had opened the screen door and" was whispering to Amanda, asking about her age (she is 13). Then he said, Oh.  You look much younger."  He held his hands together, held them up to his cheek to mimic sleep, and asked her if everyone else in the house was still asleep! 

About that time my husband woke up, jumped out of bed and started running toward the French Door, yelling.  At first the man just mumbled incoherently and then he turned and jumped over the railing.  My husband dialed 911.  At 70 years old and with leukemia -my husband couldn’t jump over the railing so he ran out of our bedroom toward the front door trying to catch the intruder before he got too far away. 

Amanda’s dad, (our son Dennis) had been sleeping in the guest bedroom across the hall, but when he heard the commotion he jumped up and raced out the door to help apprehend the intruder.  Thankfully, the 911 operator had two Snohomish County Sheriff’s Deputies at our house in a couple of minutes and with Dennis’ help they caught the intruder. The Sheriff’s Deputies arrested him and took him off to jail where he remains until his September trial.  The Snohomish County Prosecutor claims he could only charge him with “criminal trespassing and possessing drug paraphernalia”.  I learned that the intruder has been convicted of dozens of felonies.  The typical sentence for criminal trespassing - if - he is convicted is between 4 months and one year in jail.  I am too scared to ask what will happen if prosecutors offered him a plea bargain. 

I always wondered how a pervert could enter a house completely undetected and abduct a child.  Now I know, all you need is one glitch in your security plan.  In our case the glitch was the quiet dog and the gun was out of reach stored in a closet. 

An even scarier after-thought is that the night before, our five year old granddaughter was sleeping on the pallet next to Amanda.  She is so tiny that this pervert who we have since learned had been convicted of raping a child - twice; could so easily have taken one step into the bedroom, scooped her up, perhaps without even waking her, and we would have never known what happened to her. 

Our sense of self-confidence - that we have always been diligent in taking care of our children and grandchildren - has been forever shattered.  On the other hand we are filled with joy and thanksgiving to God that this wretched man didn’t have the opportunity to touch any of our grandchildren – this time.  Hopefully Amanda will be comforted somewhat by seeing her grandfather and daddy fly into a (controlled) rage to chase that pervert into the waiting arms of the Snohomish County Sheriff.  And of course counseling should help.

I get sick to my stomach whenever I think about how dreadful this situation is and feel so stricken that other children are at risk from a Department of Correction System that is sloppy in registering and monitoring sex offenders.  

I read recently in a Seattle Times article that a Seattle defense attorney has asked for a review of Washington’s sex offender registration and notification system because he considers those laws “unfair”.  Is he insane?  Why are sex offenders the ones who get full disclosure and legal protection in this state? 

The Snohomish County Prosecutor’s office has been secretive, evasive and condescending toward our inquires.  If it's true that this man has such a long, violent history with dozens of felonies then why is he still roaming the streets stalking and grooming my granddaughter while she is asleep in bed? 

This seems very strange to me.  We need to know the truth and have full disclosure on the risk we are under since this guy apparently has a strong history of stalking and violating protection orders and may only get 4 months in prison – if – he’s convicted.

■          What happened to the 3 Strikes Law?

■          What happened to all those sex offender laws we passed in the 1990’s that were suppose to protect the children of Washington State?  Have those laws been revoked?

■          Where’s the accountability in the Washington State Department of Corrections? 

■          Hello?  Is anybody home over there?

Jocie DeVries - A very frustrated grandmother;

  

Choosing love - Family Party

            For me, getting together with my cousins is better than drinking champagne.   There is something about looking into their eyes, seeing those smiles and hearing their voices that energizes me.   This year, I finally made the commitment to host a party with my family. 

            I know that I wrote about family parties in Lies That Bind and the family members sniped at each other and formed cliques.  We didn’t have that type of party.  I seldom see a group of people who interact with as much love and respect as my cousins.  I love to watch them sharing their stories and retelling the old family stories.  I can almost see bonds forming, wisdom being passed and family members finding solid ground.

            The magic of a family that treats each other with love and respect seemed to permeate even into our pets.  For Saturday dinner we had fifty-eight people and eight dogs present.  The pack of dogs occasionally wandered through the crowd of people, but mostly they went off and played doggie games with each other.  They never got rowdy or growly with each other.  They were just a joy to watch as they explored my acre of gardens or followed the preschoolers.

            The preschoolers were another delight.  Our family is at the stage where another generation is having babies.  We had two tiny babies and three children who were three.  The three year olds started with sharing a few toys and running some trucks around then they discovered the fountain and my child sized pails for holding cut flowers.  The children industriously watered all the weeds in my garden.  When it was time for my niece to take her son home, he’d gotten totally in to the cousin thing and spontaneously hugged his three year-old, fourth cousin goodbye.  Those two caught the magic.

            It all sounds idyllic to talk about a family dedicated to loving each other.  I admit that I got hundreds of heartfelt hugs of gratitude for hosting the party.  We laughed a great deal.  From the outside it may appear that we don’t have problems.  It may look as if we all grew up in amazing, stable, loving homes.  No.  Most of us have had cancer—many of us have had it more than once.  I am officially classed as disabled as are some of the others.  Not all of us had two parents who knew how to parent.  Some of the cousins who came had a rough childhood.  Still each person came to the party and gave and received love.  How is it that we can get together and share such love that even the tiny children and dogs treat each other amiably and share the opportunity to explore the world together?

            I think the answer to that question lies in the decisions we make.  I could decide to recline on my sofa and whine about being tired or in pain, or I could get up and do something that makes me feel better.  I can decide to discipline myself to rest when my body needs to rest.  Most of all I can decide to love and be happy.  As I talked to my cousins, I understood that they have made the same decision.  We need to decide to treat each other with respect.  People must make a decision to love.  Yes, we’ve all been sick or disappointed, but have made the decision to be happy, love and find new life adventures.

What About Maude?

            I have just gotten another manuscript ready to go to my poor editor. Well, Maudy is ready to send off except I don’t have a name for the book.

            Now, this is the twenty-first century I have several modern options for naming my book.  I tried Googling “what to name my book about Maude.”  I learned that the name, Maude, means Battle Maid, which is very appropriate for a United Methodist Pastor.  I’ve considered doing more research, writing a list of significant events in the story and incorporating something from that.  I could poll marketing people or look for the names of best selling books in the romance genre.  Alternatively, I could do the same thing I’ve been doing to solve my problems for most of my life.  I can ask my friends, “What do you think would be a good name for my book?”

            Maude is a widow in her early to mid forties.  Her daughter has finished college and her son is a junior.  Maude’s husband died of a brain injury ten years before the story opens.  His injury caused him to hallucinate so that just before he died, he tried, almost successfully, to kill Maude.  Part of her problem is the trauma this event has left on her family.  The other part of her problem is that she must learn to find the pieces of her life that went missing while she was hospitalized. 

            This story begins shortly after Maude has been assigned as the pastor to a church in the small town of Blackfish on the Kitsap peninsula.  On a Monday, she runs away to the city for a day where she trips and falls onto Ralph’s chest.  From this moment we know she is destined to spend the rest of her life with Ralph.

            While Maudy and Ralph are figuring out their relationship, she is kept busy and entertained by her congregation, her family and her cat, John Wesley.  When a boy at the high school attacks a girl in the hall causing the girl to suffer brain damage similar to Maudy’s experience, Maude makes certain the family will not be offended by the presence of clergy then plunges into their crisis, using all the wisdom and memories of her own injury, to love and support this family in crisis.  She explains her involvement by telling Ralph, “I realize that by helping these strangers--making certain they have meals delivered and sharing what I know--I am helping myself.  I am rewriting my own history, only with more love.”

            Maude’s congregation consists of twenty-three people.  The youngest is only seventy-nine.  She is certain the conference is planning on closing this church soon.  Her struggles include her own internal battle as to whether to fight for the church to grow or let it dwindle and die along with its elderly congregation.

            Part of Maude’s charm is that she has vivid dreams that usually include things she can’t have, like fresh groceries or cute shoes that are too charming to ever find in a store.  Ralph figures prominently in her frustrated dreams, not always in a frustrating manner. 

            She is a bit of a rebel.  When we first meet her, she takes conscious pleasure in the feel of Ralph’s shoulder under her hand.  We see her giggling in the hardware store with the town’s scarlet woman about the best place for disposing of dead bodies.  Ralph occasionally exclaims in frustration, “You don’t look like a preacher and you don’t fit any of my stereotypes about them either!” 

            Maudy’s Porsche is my favorite of her little anti-social rebellions.  To put the matter delicately, her car has had energy-source realignment surgery.  She found a mechanic to rip the gas engine out of a Porsche body and install batteries and an electric motor.  She plugs the thing into an outlet at night and giggles when men give her silent car funny looks.

            The story is a delightful mix of contemporary social commentary, romance, wisdom and voyeuristic fun.  Alas, it does not have a title.  Do you have any suggestions?

Note:  If blogspot won’t let you leave a comment, you can click here: http://www.delindamccann.com/contactAuthor.htm

Travelogue - North to Alaska

            Our vacation started just a month ago as I was scanning through my e-mail.  I’d been nagging my hubby for months to take a vacation.  His standard answer was that we couldn’t afford it.  On this particular day, Princess Cruises sent me an offer I couldn’t refuse for fourteen days in Alaska.  “Look honey!  We can’t stay home for that much.”

            He grumbled some more about tips, port fees and other hidden costs.  I showed him that we did indeed have sufficient funds in our savings account.  Eventually, he not only consented to take a cruise to Alaska he got quite excited about the whole adventure.  Thus, we set sail from chilly Vancouver BC for Alaska via the inside passage.

            Our first adventure began our first night at dinner when our tablemates were seated.  People who prefer open or anytime seating have no idea of what they are missing by passing up the opportunity to dine with several complete strangers every night for a week.  This has got to be one of my favorite parts of taking a cruise. This week’s tablemates did not disappoint.  We had two sisters traveling without their husbands.  They were delightful.  The other three people soared above and beyond a writer’s dreams for random people to meet on vacation.

            We were seated with two single men and one single woman, all three, attractive adults traveling alone.   I instantly recognized the potential for a romance writer.  My dinner companions met and exceeded my wildest dreams.

            Yes, both men instantly started striving to attract the young woman’s attention.  She commented that she might attend a certain party after dinner.  They both agreed they wanted nothing more than to attend the party.  She laughed at their jokes.  They were inspired to greater heights of comic wit.  She laughed all through dinner.  Her interests were their passions.

            When we went down to dinner on the third evening, the waiter seated me next to the young woman.  I recognized that it would be cramping her style to be seated next to me, the writer.  She solved the problem by getting up and changing chairs.  I thought she was a little weak as a romantic heroine if she couldn’t flirt with two men at the same time when an older woman was seated between her and the objects of her delight. 

            One afternoon when we met one of the men following her off to line dancing, I suspected that he had succeeded in capturing her affections exclusively for himself. Sure enough that evening, the victor proudly sat next to the young woman at dinner, whispering and giggling in her ear.  Alas, the vanquished sat next to me and carried on a discussion of the role shifting cultural norms have on the style in which stories are told.  I had to wonder if our romantic heroine was absolutely certain she’d made the best choice.

            I was sad to part company with our young friends when they left the ship for inland adventures.  They inspired me to focus my writing on a series of short stories about people I meet while traveling.  I would have to travel more than once every three for four years for that to be viable—such are the sacrifices of the writer pursuing the muse.

Life With Fetal Alcohol Spectrum Disorder

One of the major misconceptions about drinking while pregnant is that the baby will outgrow the disability.  I asked some friends to be guest bloggers to tell their stories of life with their adult children with Fetal Alcohol Spectrum Disorders (FASD).

Tabitha is a parent of a young man with FASD.  She is committed to helping others understand the severity of this disability and to supporting other parents struggling to raise children with FASD. - Delinda

Here is Tabitha's story:

Life has been a real challenge for our son.  He was diagnosed with FAE when he was 10 yrs. old.  FASD (Fetal Alcohol Spectrum Disorder) has impacted our son's life in so many ways.

         First his quality of life is compromised, he doesn't understand why he can't do the same things as other people such as playing school sports, having a social group of friends to hang out with, getting a job or a driver's license and most of all living independently in his own apartment.

He doesn't like having parents or others telling him what he can and can't do.  He wants the freedom to make his own choices, but doesn’t understand the consequences when he makes the wrong ones. 

He has struggled for 16 years in school trying to get an education and earn his diploma so he can get a good job after graduation.  He just graduated from high school. Other than having an aide for one year, which was a very much needed, he didn't receive any adaptations.

One of the most frustrating things for us is how inconsiderate people in our community are towards people with intellectual disabilities and how they make fun of them.  People take advantage of my son because they know they can get away with it. It's heartbreaking to see how persons with FASD are treated as an outcast in our society.

Our son has been on heavy medications to try and control his hyperactivity, short attention span, and his moodiness. Now we have learned that he has been given the wrong medications for a mood disorder that has been overlooked for years.  Since he started on the right medication, his future looks much brighter.

I can't predict realistically what his future is going to be like at this point. I don’t like to think that far ahead.  We are used to taking things one day at a time, especially since he became involved in the justice system a year ago, which is another challenge parents would rather not have to face.

I really doubt that our son will be able to live on his own.  He will always need someone to guide him through life and help him make the right choices—someone to make sure he gets to work on time, and picks him up. He needs guidance to keep him away from the people who are bad influences on him because he doesn't have the ability to say no or to understand when someone appears to be his friend that they are just taking advantage of him because he is disabled. He makes friends easily but friendships don’t last.  He can't understand why certain people have hurt him by laughing at him behind his back or why others steal from him.

There is no way to know how much society really spends on our son since it's very difficult to get state services for him.  Our community doesn't offer any services or activities for someone like him. As I see it, we as his parents spend much more on him than other parents do with their children, but this is one issue that needs a major change for us because he is an adult.

Tabitha