Fetal Alcohol Spectrum Disorders

As a medical assistant, I am required to have continuing education in order to keep current. Otherwise, I would need to retake an exam that is pretty tough and expensive. I was fresh out of college the first time I took the thing and still had to work hard on getting it done. It has been nearly five years this time. Tonight I attended an education session on Fetal Alcohol Spectrum Disorders.

The first thing I noticed is the word “spectrum”. It is used in describing certain disorders like Autism’s wide assortment. I like this word when it is relating to light through a prism and the resulting colors. In this case it means “a continuous sequence or range” (Mirrim Webster, 2017). I do not like it so much in this context: Spectrum these days bodes ill.

The second thing I noticed is that I had some wrong ideas about drinking while pregnant. I stopped drinking after I found out I was pregnant, but like many other women, I had been drinking at the beginning of the pregnancy. My ex-husband and I were convinced that to wait to have a child until we could afford to meant to never have a child, and so we were kind of trying to get pregnant. I just never once thought about what it meant, and how soon it would happen. We rocked out and partied on the New Year’s Eve, and then, I found out I was pregnant. Just a few weeks later. So, probably at the sixth week in. Like most women.

The third thing I noticed was that there is a huge discrepancy in what pregnant women and women who are trying to get pregnant are told about drinking during pregnancy. Some physicians say just a drink of wine is safe. Just one drink every now and again. Others say no alcohol is safe. And that was the bottom line of this education event: No alcohol is safe. Not drinking alcohol is the best for the child’s safety.

Resource from the Center for Disease Control, Alcohol and Pregnancy

In the first week of development, the central nervous system is developed, and the head of the child. The face of the child. Week two is arms and legs and eyes. Week six is the development of teeth and the palate. When does a woman usually find out she is pregnant? Usually towards the end of this time frame.

Listen to this. Listen carefully. This was part of our lesson tonight. Fetal Alcohol Spectrum Disorders (FADs) are caused solely by prenatal alcohol exposure and are NOT hereditary.

During this presentation, I learned that Fetal Alcohol Spectrum disorder is caused solely by the mother drinking during pregnancy. There is no other cause. It is totally preventable, but there are pretty high occurrences.

But, we all know about alcohol. It is legal, and it even has certain health benefits! Fetal alcohol spectrum: That is caused by someone who is a drunk, someone who can’t live without their next drink. Not by social drinking, can’t be. Not by an occasional wine cooler! Look at the gals who are poor, or a certain race, or are falling down stinking drunk.  There is no reason to panic. No reason to stop drinking.

Note that this is not saying that FASd is caused only by alcoholic mother drinking while pregnant. Nor does it define the race or social standing of the mother. It is not laying blame. It is giving the source for FADs, a source that is undeniable: The mother drinking alcohol while pregnant.

While some children are clearly FASd, many do not show the physical attributes. Our speaker was saying that a lot of kids are misdiagnosed at Autistic, ADHD, or something similar. These kids have social issues. They don’t have good boundaries and are often taken advantage of by their peers, or they are pranked by their peers. They lack good judgement. They are impulsive. One of the videos the speaker showed was a young man who said he just walked across the road in traffic and got hit. He didn’t think. He has poor judgement and decision making skills. He got hit.

Depression, anxiety, mood disorders, high risk behaviors; these are all symptomatic to children who are born with FASd. They look like other disorders and are often misdiagnosed because there is not link to show that the mother drank while pregnant unless the mother specifies to her doctor that she did drink while pregnant.

“Few estimates for the full range of FASDs are available. Based on community studies using physical examinations, experts estimate that the full range of FASDs in the United States and some Western European countries might number as high as 2 to 5 per 100 school children (or 2% to 5% of the population).” (Fetal Alcohol Spectrum disorders (FASd), 2015)

The fourth thing I noticed is that some of the symptoms and attributes were similar to dementias. I asked if there were studies or information about senior citizens with dementia and FASd. This is just beginning to be looked into. People have drunk while pregnant for centuries and this is just now being looked into. This is important to me because if a patient is misdiagnosed, they then receive the wrong treatment. The wrong treatment can be catastrophic. Deadly.

My daughter is fine. She is smart and talented. She is amazing to me, a gift. Many other mothers are looking at their children and remembering that they had drank during the beginning of their pregnancy, and their kid is fine. So, this must not be a real problem, right?

But some issues don’t turn up right away. Some are only visible later in development. Some are nearly invisible. Behavioral issues can have other causes, right? Children can be misdiagnosed without the whole facts. And once again, FASd is not always visible with facial markers clearly stating this mother drank, and this child has this disorder. Another point to consider is every pregnancy is different. Every child is different. You may have “dodged a bullet” with this one, but the next child may not be so lucky.

It is not a myth. It is real, costly, heartbreaking, and documented.

The fifth and most glaring thing I noticed is this. There is a huge uproar about vaccinations being the cause of autism and other similar issues.

There seems to be no uproar about Fetal Alcohol Spectrum disorder.

Here are a few links with more information regarding FASd:

https://www.cdc.gov/ncbddd/fasd/data.html

http://www.marchofdimes.org/complications/fetal-alcohol-spectrum-disorders.aspx

http://www.nofas.org/recognizing-fasd/

https://www.youtube.com/watch?v=h7q5SiO4HBU

https://www.youtube.com/watch?v=dHRZjTiFEHs

The Rest of the Story

While looking around online, I found that the newspaper I usually read doesn’t have obituaries from a nearby town. I went online to see where to find obituaries from that town, and in doing so, discovered someone I had met and liked had passed away. He was a bit of a character. His accent made me homesick for friends from Germany I had met along the way. He was discouraged by his health and by loneliness.

I only knew a little part of his story. I would have loved to know more. He came from Berlin to America, served in the military here. He loved and had a family. He played soccer. Who knew?

We, in our various jobs and activities in life, meet up with people who are at different points in their stories. Sometimes we get to know them well, but still have no idea at all who they are. Even our own parents’ stories are unfamiliar to us. The young girl who loved baseball. The boy whose father turned away from his family.

In the doctor’s office, time is so very limited to chief complaint and not much more. Vital signs are taken but no time is given for the vital questions. Hard to put into words, people tend to say to their doctors “I’m ok.” If they say “I am not ok” it is often followed with “what are YOU going to do about it? Fix me!” but it is ambiguous. Doctors aren’t really about gathering stories other than what the vital signs, labs, and physical examinations cover. There are psychiatrists, ministers, and such who are more adapt at it. If a person can be seen and heard by one or the other.

And who cares for the doctor? Who listens to their stories, holds them in their grief? Who laughs at their peculiarities?

I worked in a nursing home and had the care of some folks who were gone deep in to Alzheimers, or similar end of life prisons. So little was left of the vital and vivacious people they were. Little hints here and there: a mink in someone’s closet. A photograph.  A phrase. The fellow who had so enjoyed driving his little speedy car, the same car that robbed him of the ability to stand and walk after a bad accident over fifty years ago.

A lady there was not able to feed herself or digest food that hadn’t been processed into a paste. She was nonverbal. The food looked awful. Someone who was feeding her was playing “here comes the airplane” to get her to open her mouth.

She spat it out at him.

In her former life, she had been a cordon bleu chef.

I have met frightened, depressed people who once were alive and on fire with living. I have held the hands of folks who are getting on to the end of their story, the final page before “the end.” They are bewildered that all their life has led to this. Why this. Why like this?

Time is running rapidly and we just don’t have time to stop, remember, and listen. That is how people become things. A bother, a waste of time.  Inconvenient.  But we are human and they are human too. Would it kill us to find out a little more? To hear the rest of the story?                            

I am getting older and find I am forgetting parts of my own story! That is shocking, almost as shocking as seeing my face in the mirror and not seeing the “me” I think I am! And if I forget myself, what is there left?

So I am working on gathering stories. 

Lifeline Screening

I have been aware of Lifeline Screening for some time now. At first I pictured it for the Medicare crowd only, but now I believe it is a service that anyone could and should take advantage of. And so, today, I did go in for screening while they were here in Frankfort, Michigan.

My Dad had heart attacks starting in his early twenties and ended up having bypass surgery in 1977, when it was still new and almost theoretical. He had eight bypasses. My siblings have all three, suddenly in a very short time frame of each other, had heart issues and have had stents put in. My closest brother had bypass surgery, nothing like Dads, but still scary. My grandparents on my mother's side suffered from Diabetes and stroke. My sister has diabetes. Mom's cholesterol levels were always sky high. She had bone issues from childhood on. 

We are a genetic walking time bomb.

I am pretty  healthy except for weight issues and some structural problems. (A bum shoulder and a really bad Achilles heel problem with bone fragments.) I didn't smoke in spite of attempting to a time or two. I don't drink much anymore. Genetically, I am inclined to alcoholism and don't have time nor money for it. Mental health is pretty good too, now a days. I am post menopausal, so yes, I am somewhat emotional and depressed. My husband doesn't quite get why I am a little obsessive about heart issues. All testing I have had done previously (stress tests, EKGs) have been fine. 

I figure better safe than sorry.

So when a letter from Lifeline came in my mail I wanted to get these tests done that no way could I afford otherwise. For under $400.00, I could get bone density, carotid artery and abdominal aorta ultrasound, testing for atrial fibrillation, peripheral artery disease, c-reactive protein screening and even glucose screening. 

If nothing else, these tests will provide a baseline in my medical history. 

I had to fast, no big deal. Comfortable loose clothing was requested to be worn. I arrived early, was processed quickly having pre-registered and prepaid the testing over the phone. The crew of ladies I met were very nice and very professional and quick. 

It will be a little while for the results to come back to me, but over all I am satisfied with the experience. I recommend this screening opportunity to you for its cost effectiveness and availability and thoroughness. 

In past medical positions, I have seen people come in either immediately from Lifeline Screening events with medical concerns that needed addressed ASAP, or with results that give their physician a leg up in providing good treatment plans for them. If you have not considered it, maybe take a look at it for yourself. If your family history is like mine, this is a great tool to evaluate your health.

Here is some information from Lifeline Screenings website

Available screenings:

Testosterone Deficiency Screening

Vitamin D Screening

Heart Disease Screening

Congestive Heart Failure Screening

Carotid Artery Disease Screening

High Cholesterol Screening/Lipid Panel Test

Chronic Obstructive Pulmonary Disease (COPD) Screening

Atrial Fibrillation Screening

C-Reactive Protein Screening

Lung Cancer Screening

Abdominal Aortic Aneurysm Screening

Health Risk Assessment - 6 for Life

Type 2 Diabetes Screening

Osteoporosis Screening/Bone Density Test

Peripheral Arterial Disease Screening

Elevated Liver Enzymes Screening

Chronic Kidney Disease (CKD) Screening

High Blood Pressure

Prostate Cancer Screening

Thyroid Disease Screening

Colorectal Cancer Screening

Interlochen Immersion

Summer 2009

                The reed kids were already at their table, making their duck calls and doodle sounds.  The lights were on, the instructors were assigned rooms, and I was assigned a broom and mop.  Blessed, blessed work without stress or fear of being called once more on the carpet for errors or misjudgments.  Mine, someone else’s, it was my mistake.

                I had been here before.  Well, not here; not in Thor Johnson Dorm, but on the campus of Interlochen in general, almost thirty years ago, learning the power of ammonia and Lysol brown cleaner.  Back then it seemed fruitless to talk to anyone but the other housekeepers and maids.  The students or campers were from another world from us-the world of the “haves” and we, well….

                My dream job was ending.  I felt it long before I admitted it, and felt the finality of it as well.  It wasn’t going to be just me, leaving; it would be the entire business closing like a book, The End.  My hours had been cut more than half, so Interlochen was an attempt to fill in the slack.  All summer I fought the inevitable.  I almost missed what was right in front of me. 

                The instructors, men in blue corduroy and joviality, were not what I expected.  I was timid to approach them until the cheese and the snippet of music.  The cheese was on Mike Davison’s door, a subtle hint at college days.  The music was the WYSO piece of the year:  Symphonie Fantastique.  Da! Da! Da didi Da!  Da!  Da!  Da didi Da!  Mike coached his students, emphasizing the punch of each note. Powerful!  Hmm, familiar.  What was it?  I finally asked him.  He told me, and told me the WYSO concert date, and I made plans to attend.  It is a horrifying piece of music, based on depression, hallucination, death and dying.  Mike took ghoulish pleasure in describing the piece of music that was a head rolling down the stairway, how it was written so you could actually hear the head hit each tread.  Brrrr!

                And suddenly, I had peers with amazing students and instructors. Wonderful musicians with wicked senses of humor. Quirky kids who were devoted to their goals, their instrument, their practice time, and even their reed-making.

                What amazed me is that the instructors, top of the line accomplished musicians, practiced as much if not more than the students. They were always coming in early to make funny noises on their mouth pieces or reeds. Working their lips, keeping them.. um.. pliable? Flexible? Strong? They always did scales and arpeggios. Always.  As I swept and mopped my way around these amazing people, I started noticing how much effort they put in every day. It started seeping into me.

                I had band and choir in high school, but I was mediocre at best. I didn’t understand discipline at all. Hardly had any drive to move up in chairs. If I did, it was a happy surprise. I drew and experimented with art, and got pretty good, but didn’t even try for excellent. What made these people different? I wanted to know.

                So, after working within this amazing place for a summer, I started asking questions. I interviewed my friends, the instructors. I asked the reed kids why they worked so hard. I watched, listened, and got saturated in this environment of discipline.

                Then, I went on with my life and tried a direction that was practical, but was not really my passion.  Now after all of these years, I am revisiting the interviews with these men and women, and hoping to find what I experienced while working at Interlochen. I am hoping to find something to share, a treasure to encourage others who have been in my shoes, and to maybe poke into wakefulness the dreams that we started out with as children.

More Inappropriate Songs....yada yada

da da di da di da When the stars align....

Jobs may change but the stream of music in my head never goes away. And, thanks to my daughter, the radio at work, and various friends, the file of music keeps increasing. Oh, my, do they ever.

So, I am working along, minding my own business, watching the clock and paying attention to my duties. My boss, who is more than a little crazy, had to introduce me to this. Now, I am a child of the 70's and 80's, so I am very familiar with this group, AC DC. But, not AC DC doing the  Hokey Pokey.

I lost all ability to do any kind of work for a while. I was laughing so hard. My husband told me I was going "Hokey Pokey" and then snorting in my sleep.

Currently, I do not work where the public can see me much, so I have busted a move. This is seriously challenging at my age. It is just that I have a hard time standing still for long periods of time and need to move around a bit, and fidgeting doesn't quite do it anymore. So, if there is music playing, there will be movement. Of course the music of choice at work is... Country.

Now, I have nothing against country. I was raised up on country music. I have Hank Williams Sr still singing in my mind. I watched Hee Haw, and the Porter Wagoner Show. With that in mind, I have to say country music has done changed. Boy howdie, has it ever. Some of this stuff I am unsure where to categorize. Then they get stuck on a phrase that just isn't right. "Gonna" is one of the songs that drive me bats. "Put a ring rock steady on her hand." Then there is "Rock On" which shares a similar line. There are probably more, but I just can't abide the idea of looking for more of a line that I find totally awful.

There are a couple of songs right now that make me kind of homesick, they are so very country.  Jennifer Nettles has one,  and that fellow Billy Currington. Country music is music with strong roots and a specific kind of sound. The steel guitars may not be as abundant as they were in the day, but the twang and the heart is.

My daughter has taken me to a couple of concerts this year. Aren't I lucky? She is pretty awesome and our tastes tend to run together on some things, like music and art. So, anyway, she took me to see a group named Lacuna Coil. They are named for an insane asylum in Italy. I should have  put the name and the genre "heavy metal" together, but I was caught flat footed by this concert and the other three guest bands!

I enjoyed the heck out of those bands!

Then my boss, again the crazy guy, introduces me to a group called Shinedown. Now, there is some music that one wouldn't generally want to sing when serving the public. "State of My Head" kind of reflects how I felt when changing jobs, but it is even grittier. The metal genre is full of language I pretty much detest-bands use the F word as much as they breathe-but there are some pretty good lyrics and stories within the songs. Just hard  to smile and serve the public when, you know, screaming out the favorites...

The other concert my daughter took me too was Lindsey Stirling. The only reason her music is inappropriate to sing at the workplace is, if you have ever seen her perform, you may be tempted to dance all over creation the way she does and use a violin as a weapon.

Please know, in no way am I against music at the workplace. Just think about the words of the songs if you are working with public. Be careful when moshing if it is outside of a known mosh pit. Play nice. Music is as essential as language and breathing.

Have a nice day!

Silly String and Light Sabers: Remembering Tim

My friend Tim. I will always see his rosy cheeks and his serious face behind which his sense of humor dwells waiting for the right timing and victim. 

It is never easy when a friend passes away. 

The Kirback family accepted me in without any qualms. I met Jon first, then Tim. Eventually, Pam decided I was ok and became my longest friend. Brenda and Lisa will always be little girls to me, even though they are grown up mommies and even grand mommies, if I remember right. Soon, anyway. George and Joyce, Mom and Dad, completed this extended family.

I was a disturbed teen, not sure why really.There were a couple of years where I absolutely flourished. But my head was not in a good place and I had suicidal thoughts. Tim basically got my attention and quite probably saved my life at that point. He shared Kahlil Gibran regarding friendship. I have to say, Tim was a very good friend at that time and forward. The whole family was, and still are.

The Prophet, Kahlil Gibran

But growing up and having your own families and life challenges. It is hard to keep right in touch all the time. I knew Tim had married: Luanna was the other half to their whole selves. They had children. The normal stuff. But, I had no idea that Tim was a clown! Shoots the Clown. Who knew?  I knew George and Joyce did rendezvous, but had not a single idea that Tim did! I didn't know how quickly my friend would be leaving us, and all the sudden, he was gone.

I asked my friends and Tim’s children if I could do a blog in remembrance of him, if I could share about the most amazing funeral I had ever been to, if I could encourage everyone to raise a cup of coffee in Tim’s memory. They said I could. I know this is a difficult thing to read, and I do not intend any harm with this.

More than anything I wanted to share how this captured Tim’s identity, celebrated his life, and that he gave laughter to his friends and family in a time of sorrow.

Tim’s daughter, Alicia wrote this for me:

About a week before my dad had his heart attack he sat me down. I'm unaware if he spoke to anybody else about his final plans and wishes He told me that I had to make a promise to him and that was that if anything happens to him and he was hospitalized, that if the doctor says there is hope, that I would chase it. But when the doctor said that all hope was gone I had to promise to be able to tell them to take him off machines. Very reluctantly I promised. I had no idea that within 2 weeks I have to make that call.

Immediately following that he said, now if anything does happen to me I don't want people to cry at my funeral. He wanted to be remembered for his crazy antics and twisted sense of humor. He then told me who was pallbearers would be:  He says his brother, and his three brothers-in-law, his best friend Tom, and a young man who he had emotionally adapted named Alex. He told me that he wanted them equipped with practical jokes and gags. He told me to find a way to put a prank everywhere I can I get something to make people laugh, or they had to make people shudder in disgust.

I met with Gaylord (Jowett) to talk about the funeral arrangements I then told him of Dad wishes for the funeral to be pretty crazy.  One of Dad's wishes was to be very naked with an elephant head covering his groin. I could not pull myself to bury my father naked. I did give him his clothing for his frontiersmen camping that he so much loved throughout my life, but I did give him the elephant had that he wanted.

 Gaylord was fabulous as helping me to arrange things that were going to be so funny that my dad would have gotten a great laugh out of it. The last thing that my dad said was, I don't want you to do flowers, so I did not. I jokingly said well what about at the ? What are we going to do, silly string? He said that would be great! So when I went to buy my preparations for the funeral, I remembered his wish to not have flowers and purchased 44 cans of silly string to meet the need. I had no idea that I needed more.

I wish I could say that this was a big elaborate plan that Dad had very carefully orchestrated but really and truly, what it was, was my dad saying he wanted people to laugh and he wanted it full of practical jokes and gags.

Honestly I thought he was insane. I look back and I think he did it for me.  When I got to go shopping for all of the crazy things for his funeral and then I got to set it all up and watch people have a good time; it took the pain for that short amount of time. I did not realize what I was going to spend a week and a half laughing and joking and remembering all the crazy things that I did with my dad. It made that week of preparing for the funeral much less painful. Do I think that my dad did that for the rest of the family? I don't know. But I know that he wanted the funeral this way so I can plan his funeral and have fun doing it.

 I only wish that he had given me something to have fun with after he was gone and after the funeral is over but I guess they didn't have time to prepare for that.

The pranks were amazing. Plastic spiders were all over Tim in the casket. The young kids found the “creeping hand” and were running around with it trying to scare people. There were light sabers. There was his Son-in-law, wearing the clown suit. There was a lot of laughter. Tears happened, but laughter prevailed. Even the pastor couldn’t help but remember Tim’s mischief over the years, and shared again with family and friends the epic story of Tim and Lana’s wedding complete with fainting and misconceptions and all.

Funerals are for those of us who remain, to remember those who go on ahead of us. This funeral was a perfect snapshot;

And now, Tim and Lana are back together, forever.

A great celebration of a good friend, loving father and son, and a wicked sense of humor. Even though he tried to avoid us grieving, well, it can't be helped. We are human, after all. 

Top of Form

But still, what a way to be remembered, what a way to go!

Be Careful What You Pray For...

"You really should be careful what you pray for. 
I am no longer employed. Though this is difficult it is not necessarily a bad thing. I am looking forward to the next thing."

This was my most recent post on Facebook. Perhaps I should explain. I had just been dismissed from my job after finishing rooming patients for my doctor. He has a short day on Thursdays. I was working on completing tasks for the day, preparing for the next day, putting out fires.

And then I was being told before the day was half over that I was being dismissed, that I just wasn't getting my work done fast enough. The patients love me, I was told. I know this: I love them back. You are a hard worker, i was told. I know that, too. There have been complaints to the board. 

If I am honest, there was plenty of warning before this day, this moment. My guts even knew something was not working right. I felt separated. 

It still felt like a punch to the gut. 

My Facebook post sounds flippant. I feel nowhere near as chipper and cheerful as I sound. I really did like my job, my boss, my team. But I struggled so much with the speed, the paperwork, prioritizing priorities. I worked hard to improve. Stayed late, came early. Wrestled with it. I just maid it over half a year. I really thought I was starting to get it. I really thought I had to stick it out, and that it would be simpler with time. 

My heart is broken and I am embarrassed by failure.

I do believe I got what I prayed for. I have been praying since day one that I would do my best, that people wouldn't get hurt. I prayed for a way to have my dreams as well as work. I prayed that my live outside work would become balanced, and my life inside my work would too. I prayed for direction.

I received experience, friendship, and encouragement. Things are moving fast. "This feels like things are moving as fast as a house of cards falling apart" I told my husband earlier today. He countered by saying "Or like things are flowing together." 

Now,maybe I can think about what I really want to be when I grow up. I know it has to do with people. And I know I will be good at it.