Blue Willow

<Update: Ramara just joined ePm. Originally published 2009-03-18 09:25:35 -0500This is now being posted under her name, but as I originally edited it I am leaving the intro as was. Welcome Ramar! carol>

Ramara will be posting with us directly in future, but this time she asked me to post this for her. Here are two posts which appeared first on Daily Kos (the most recent on Mar. 15, 2005, with a link to the earlier one. With her permission I am posting the first one which is linked in the most recent commentary so that our readers can be fully tuned in.

Health Series:  Fetal Alcohol Syndrome

Saturday my son will turn 24.  He lives in a group setting here in Tucson, receives SSI, and I don't know if I will hear from him so we can do something to celebrate.  He receives case management through the mental health network, and that treatment is court ordered.  The court order expires next month, and I worry that his treatment providers will not seek to have it renewed for another year.  Last time he was not committed, he spent most of his time living on the streets.  Occasionally he was in jail because he missed court dates or violated the restraining order I have.  When he was in jail I breathed easier because he was off the streets.  He needs the structure of the court commitment and the restraining order in order to function at all.

You see, my son has fetal alcohol syndrome, as well as either bi-polar disorder (diagnosed when he was 14) or schizoaffective disorder.  It is hard to make an accurate diagnosis because he also has a generalized substance abuse disorder.  When he was diagnosed at 14 I felt enormous relief.  Now I knew he would be able to get care after he turned 18, since he is not mentally retarded, and without major mental illness there is no place in the system for adults with FAS though they need lifelong support.

He cannot live at home, although he wants to, because of the holes in the walls that he punched or kicked, the things he stole or broke, and the threats he made to me. I sleep in the living room because I have not had the energy to clean up the glass from the broken window in my bedroom (it's been a very long time).  I started sleeping in the living room when he still lived here because I never knew who he would bring to the house at any hour, and if I were in the living room at least I stood a chance of waking up to deal with it.

People with FAS need what Teresa Kellerman calls an "external brain."  I was able to provide much of that structure for him when he was younger, but as he went through adolescence and started using drugs and drinking everything became more difficult.  It climaxed when he was using methamphetamines, and I could no longer talk him down when he was losing control. Then I got my first restraining order and commitment for him, which turned out to provide the structure he needed.  

While he was in his teens, I began learning from Teresa Kellerman, one of the country's experts on FASD, who lives in Tucson.  I went to educational sessions, support groups, read all the pamphlets and newsletters.  Meeting her as well as other parents of children with FAS was wonderful.  I had belonged to an adoptive parents group for several years by that time, and many of the FAS parents were also adoptive parents.  But eventually we hit a brick wall; at any rate, it felt like one.  That was the organic damage.

My son can also be charming, with a sense of humor and a way of trying to understand his life that is painful to watch but also admirable.  As an adult, however, he is more often depressed.  It is hard to see and understand what is beyond your reach through no fault of your own.

Fetal alcohol syndrome is the largest cause of mental retardation in the country (though most persons with FAS are not mentally retarded), and is entirely preventable.  You have probably seen the ads talking about the importance of not drinking during pregnancy.  But it is not only women of childbearing age who need to be educated.  Doctors, especially OB/GYN's and pediatricians, teachers, social workers - everyone who works with children, in fact - need to learn about the effects of pre-natal exposure to alcohol.  Also judges, probation officers, and others working in the juvenile and adult criminal justice systems;   most of them have quite a bit of contact with the victims of fetal alcohol exposure, whether diagnosed or not.  

Much of the education about FASD (fetal alcohol spectrum disorders) comes from parents of children with the condition.  Many of us adopted our children, many are birth parents who have become sober and live with guilt it is hard to imagine.  As parents face the difficulties of raising kids with FASD, we face the additional challenges of working with professionals whose knowledge of the disorder may be minimal or non-existent.  Parent-to-parent support and learning are vital to many of us.  Many experts in the field are also FASD parents.  This is truly a grassroots endeavor.

What is FASD? It is a spectrum of neurological disorders. Alcohol passes easily through the placenta into a fetus' bloodstream.  Depending on many factors, including the kind and/or frequency of drinking, and the stage of fetal development when drinking occurs, symptoms can include abnormal facial characteristics, serious medical conditions, and an array of behavioral symptoms including hyperactivity, poor impulse control, learning disabilies, problems with abstract thinking, memory problems.  Teachers often think a child is lazy when she does not know something she knew the day before, but this is literally true.  The corpus collosum, which is the membrane connecting the right and left hemispheres of the brain, is almost always damaged.  Not surprisingly, sequential thinking and such concepts as cause and effect, and action and consequence, are also generally absent to some degree.  Frequently co-occurring conditions include ADHD, childhood bi-polar disorder, substance abuse, depression, criminal behavior.

If you are interested in learning more, the following links are a good place to start:

http://en.wikipedia.org/...
http://www.come-over.to/...
http://www.fasday.com/...
http://www.PatriciaEBauer.com
http://fasstar.com

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Blue Willow

 

This is about depression, and about friendship, and about spring.  It is also about how people can surprise you - even yourself.

In November I wrote a diary for the Kos Health Care Series about fetal alcohol syndrome.  It had been planned some time before but was delayed because of the traffic around the election, and so it happened that I wrote it two days before my son's 24th birthday.  It is probably one of the best pieces I have written, and I have sent links to it to a number of friends.

 

 

Among the more personal paragraphs was this:

 

He cannot live at home, although he wants to, because of the holes in the walls that he punched or kicked, the things he stole or broke, and the threats he made to me. I sleep in the living room because I have not had the energy to clean up the glass from the broken window in my bedroom (it's been a very long time).  I started sleeping in the living room when he still lived here because I never knew who he would bring to the house at any hour, and if I were in the living room at least I stood a chance of waking up to deal with it.

 

In January, I got the e-mail address of one of the women I play with (and drive with) in Sierra Vista, and sent her links to a couple of my things that I thought she would like.  It took her a while to read them, and when she did, her response had me in tears.  She said that if the glass was still on the bedroom floor, she would come and help me get it up.  

My house has been the place where my depression shows itself.  My defense against the loss of so much that I cared about was to stop caring, and this became a cycle of mood and surroundings which trapped me.  I have not invited anyone to my house in several years.  My son has continued to break in when I am not home during the times he is up here in this rural area where there is no public transportation.  He takes food, and continues to steal when he can.  The last time he was here, he stole my jewelry case.  

It took me a week or two to get up the courage to accept Jean's offer, and the date we set up was yesterday.  During the week, I had asked about postponing it for a few days, since I felt I had too much to do to make the house remotely presentable.  She wrote back and said she would bring whatever cleaning stuff I needed, and would help me make it presentable.  In spite of my panic, I agreed, and yesterday was a day of serious cleaning.

We didn't get to the glass on my bedroom floor.  I had decided to start with the kitchen and bathroom, and that took all day.  I exhausted myself in the bathroom after a few hours and soon after that we went out to lunch.  After we came back, Jean continued with the kitchen, and I worked on a few short projects with rests in between.  I told her this day was her birthday present to me - my birthday is next week-end.

Almost two years ago, I bought a set of dishes to replace those that were  broken or lost.  Blue Willow - the real Royal Cuthbertson porcelain, with everything including napkin rings - which has remained in the box in the living room, since I did not want them broken or lost.  Well, I woke up this morning and started to unpack and wash them.  They are now in my cabinets or drying on the dishrack.  This was my birthday present to myself.

 

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