After having a mammogram in August, I recieved a letter stating that something had shown up on the images and I needed to make an appointment for more tests.  I followed through and had that appointment on Oct. 20th.  Fortunately, all that was found were cysts that are not dangerous.  But in the ensuing days ....

  
    The day of my appointment was more eventful than I had realized.  While I was at the Breast Care Center, our AS son was doing other things.  You all know how he loves photography and takes great pride in his camera.  He decided to sell his camera because he wanted to purchase a bass guitar.  I found out about it the next day.
   I knew he had done this in reaction to what was happening to me and I also knew he would regret it.  He obsessed over the bass all week long and insisted on taking it to the LDS jam on Tuesday night.  Like a child with a new toy, wanting to show it off to the folks, he carried it in.  I had been warning him that it would not be welcome in our jams because we are all acoustic.  He did not listen to me but when he was told that he could not play it there, he proceeded to the parking lot and had a “melt down”.  I had been in the back room giving a lesson and when it was over, I was told that he was in the parking lot.  I won't go into all of the details about how I was told.  But I went outside to check on him, he was so upset I had to take him home.  He had taken it very personally, and was hard to console.
   On Wednesday morning, I knew that I would probably be spending the day helping him work through the ordeal and that is just what happened.  He called and said that he had decided to take the guitar back and buy back his camera but he had lost the receipt and could not get cash back.  He finally decided to exchange the electric bass for an acoustic bass.  I took him to the Guitar Emporium to do so.
   My greatest fear was that he would be told not to return.  He has been "asked out" of several organizations because of his melt downs.  I say “melt downs” because that is what I have heard other parents of AS kids call it.  It looks like a temper tantrum, but it really isn’t quite that.  It is the result of the frustration he feels due to his lack of expressive communication skills, which is the most difficult aspect of his disorder. 
   He has never hurt anyone, but people are sometimes afraid of him because when you mix a meltdown with his 7’ tall, 400+ lb. stature, it is intimidating.  He has learned to remove himself from the situation to calm down but Tuesday evening, the only place he had to retreat was to the parking lot where it was getting dark and people were trickling into the jam. 
    I don’t know if he will be able to play the bass guitar or not.  I hope he can play it.  After a talk with the society president, we agreed to ask him to come every other week.  He has lost only half of the priviledge, fortunately.

More of Tim's photos.......For the beauty of the earth.......

I think these photos show the true heart of my Aspie son.

I think you will understand as you view them.

The times they are a changin'...

Always changing... it seems life is always changing....
and change is something Aspies have great difficulty adapting to, or at least ours does.  This story begins late one night in March when around 2 am, I heard the awfullest screeching sound I had ever heard.  I was up and hubby was asleep upstairs but he came running down the stairs.  I asked, "What in the world is that?"  He replied, "I think our van is being repoed."  Unfortunately, he was right.  They drug it away and we lost it forever.
  This is July and I am still angry at him for letting it happen.  It didn't have to happen.  He payed no attention to the warnings and they did what a business has to do to stay in business.   A friend of our AS son bailed him out and sold him an old car for $600.  He drives it to work and I sit at home with no transportation.  Yes, I am still mad.
    He started a new job in mid June.    It is a contract position that goes till Oct. and then he may be without work again.  He has not held a job for more than 2 years since 1994.  Most of them last about 3-5 months.  Contract to hire positions seldom result in hiring.  Why?  I won't go there for now. My suspicions are never par with his.

   Now we have a new housemate. 

 Not the Aspie, as most would expect, but his younger brother who lost his roommates and could not afford to keep the apartment without them.  So he is with us for a while. We hope he will finish college and get on his feet soon.
   Tim is adjusting slowly.  He has an aide who helps him with community outings who seems to tolerate him a little bit.  I subsidize his aide weekly for gas because I know he is not making much at this job, basically hoping he will not quit.  Two others have quit because he is so needy.
   My being without transportation has forced him to be more independent and use the bus system, which is great for him.  He does grocery shopping with his aid who also helps him keep his place clean.
  But good for him is not good for me.  I am stranded with no way to get out.  I have bad knees and I cannot use the bus system or walk very far without pain.  Hubby seems to like it, but I don't.  I'm stuck and he's set.  I am considering an exit strategy.

A Night in the ER

   Yep, the entire night.  From 1PM on Saturday until 4:45 AM on Sunday.  No it wasn’t Tim who was being seen, nor was it me.  It was Larry.  After taking him to the Immediate Care Center and being told he needed to go to the hospital, we arrived and were checked into the ER pretty quickly, actually.   The wait was not long but there were only a handful of folks in the waiting room, so it was looking like a good day for us, but not for long.  Shortly after being triaged, 2 ambulances and a helicopter arrived with a group of people who had been in an auto accident.   So off to a bed he was shuffled to begin the waiting process. 

   We were there because he has been having digestive issues for weeks that he would not pay attention to, even at my prompting.  Now he was in pain, dehydrated, and very weak.  I know that having no insurance was the primary reason why he would not seek treatment; and being depressed was another huge part of it and some of it was just that he was being a typical man.  I don’t think he was thinking he was invincible.  I think he was giving up.  The past 18 months of little employment has take a terrible toll on him and it is now manifesting in his health.

   Some treatment was given and a couple of hours later xrays; and a few hours later another treatment; and around 1 am, a CT scan was done.  Around 4 am the Dr. came and told us the results and wrote the scrips and gave instructions to take home.  It was about 4:45 AM when he was released.  We arrived home around 5:15 AM and both collapsed into bed for the rest of the day.  We have no insurance, so we have no choice of where we go for treatment as far as hospitals are concerned.  There is only one place you can go and that is University. 

   Lets go back a lot of years to my childhood.  We were returning from a trip to the U of L dental school where my mother had taken me for a check up, when we drove past a big brick building that looked forlorn to me.  There was no air conditioning on this hot summer day, so the windows were open and there were people sitting on the window ledges overlooking the street.   The majority of them were negros.

  It gave me a horrible feeling in the pit of my stomach and I asked my mother, “Mom, what is that?”  She then began to explain to me that it was the county hospital that took care of the poor.  I had seen hospitals before, but this one really scared me.  I had gone to St. Joseph’s when I was six to have my tonsils removed, but this place gave me the creeps.

   Over the years, the University of Louisville School of Medicine took it over and they have created a world renowned medical center that leads in research and treatments.  But the ER isn’t much different to me.  It still feels like that awful place I saw when I was a kid.  And they still cater to the poor, which now includes us.

   In the bed next to us, divided by a fabric curtain, we had 3 neighbors during our night’s stay.  Whatever HIPPA laws have done to protect a patient’s privacy, the fabric curtain and the nature of the person laying there has destroyed it.  The first was an elderly lady who was in need of dialysis.  She was quiet and promptly taken to a room.  Later a man was brought in and I suspect that he was in the advanced stages of kidney disease because he had fluid retained on his stomach and they had to intubate him to drain it off.  He was weak but he did not like the tube and he fought them for a while.  Eventually he accepted it and began to rest quietly until they found a room for him.    Then came number 3….  She was the young mother of at least one young child who had fallen down drunk and hit her head.  “Her children found her unconscious…” was what the EMT told the nurse.  Her mother had brought her there and dumped her.  The staff had no records to go by, no friend or relative to speak for her, and she was nearly incoherent.  When she spoke, her speech was so thick she was hardly understandable.  As the night progressed, she began to awaken slowly and as she did, she began to bellow at the staff when she wanted something.  They ignored her for the most part. She was constrained to keep her from moving because they wanted to be sure her neck wasn’t fractured in the fall. 

  I don’t know if she had some kind of speech impediment, but as the hours went by, if she was sobering up, her speech did not improve, neither did her choice of words.    She would not be still and continued bellowing relentlessly.  She would quieten for a minute or two when they checked in on her, but the quiet did not last long.  Larry had been given pain medication, so he slept through much of it, but I had to leave and go sit in the waiting room a couple of times just to get away from her.  As his pain meds wore off, he was beginning to get agitated. 

   On the one hand, I understand how families get frustrated and give up on members who are drug or alcohol dependent.  But on the other hand, the thought crossed my mind, “What if she weren’t drunk but was rather developmentally disabled?”  How callously the staff cared for her would have been a crime in such a situation, in my opinion.  She was difficult to understand and had no one there to speak for her.  Many families give up on their disabled members because it is very difficult to deal with, especially when the member seems to be intentionally doing the things that irritate.   Services are so hard to find and so hard to keep that disabled adults end up just like her, alone and hopeless.

   Society doesn’t want them.  They would rather they be put away so as not to be seen; out of sight, out of mind.  A huge percentage of homeless and addicted people are also mentally challenged in some way.  Somewhere along the way, they were given up on and/or they were allowed to make poor decisions concerning their care and the consequences overtook them.   I contemplate these things because I have a child who could become one of those statistics.  When we are gone, who will care?  Probably no one if we don’t find the care he needs before we are gone.  So far that search has been dismal. 

....more to come..... How we discovered Asperger's Syndrome.....

Wow, I completely overlooked this last November so I am picking it up now.  In the year 2000, I happened to see an ad previewing a 20/20 program that was going to air that evening and it struck my fancy because it was dealing with parents and kids with differences.  Tim was 16 at the time.  We had gone through several diagnoses but had not really felt that any of them were exact.  I mentioned it to Larry that evening and we watched it together.  It was like hearing our life's story with our son.  The topic of the show was Asperger's Syndrome.   We knew when we saw it that this might be what was going on.
   A couple of weeks later we saw his doctor and asked her if she was familiar with AS.  She replied that she had heard of it but she wanted to do some study before making a decision.  At the next visit she told us that she thought we had hit the nail on the head and that was when he was first diagnosed with it.
     Now finding a name for it did not do much except it gave us a better understanding
of his behaviors and it also gave us information that we could pass on to other people as we navigate life with an AS son.  We know a little better how to advocate for him in many situations.  It lessens our frustrations just a little.
   The difficult thing about AS for us is that he is high enough functioning that folks do not see it in the way he looks or when he is behaving typically.  He has a normal IQ and his vocabulary has always been off the charts, so when he behaves in atypical ways, inaccurate judgements are made about his character and our parenting.  If anyone spoke with him for more than a few minutes, they would see something was askew, but most people don't usually take time to get to know him.  He has convinced many a listener about some real whoppers about himself.  He once told a student at IUS that he had been an army sniper and they contacted the campus security who came and gave him the shake down.  Fortunately, Dad wasn't far away and he explained the AS to them.  (Go ahead, laugh, we do now.)
   So, that wasn't the real beginning of our AS walk because we have been living with it for 25 and 1/2 years at this point.  We just learned about what it was when he was 16.  He too has learned to communicate about AS with people but he still goes off on some wild tangents and says things that get him into trouble.  AS is an autism spectrum disorder and many people mistakenly think that autism kids do not speak.  He was  using sentences when he was 18 months old and he has never stopped!

A Week Without Dad

How eventful a week can be with an Asperger's child is entirely unpredictable but when something changes, like Dad is working out of town for a week, life goes a little haywire.
Usually.
   This week was a weird one.  For the most part it was normal but in some ways, it was quieter than most.   There was only one or two events that required my intervention.  Then Dad came home on Thursday.  With seemingly sincere pleas, promising to be quiet and not make any waves, I was convinced to take him to the airport with me to pick Dad up.  Bad decision.  As soon as they saw each other, the storm began to brew.  My happiness that Dad was home went out the window with the air conditioning in the truck.  So much for homecomings.
   Dad now has a telecommuting job that allows him to work at home most of the time with intermittent travel to the site once a month or so.  This is a new venture for us and it is going to require much organization and new boundaries for our Aspie.  Being a boundary buster by nature, this is not going to be easy.  He will argue his case convincingly and we will have to stand our ground and tell him no.   Maybe I should say I will have to tell him no.  Dad will probably scream it to him.
   So today was Dad's first day at home after beginning this job on Monday onsite in North Carolina.  Our Aspie came to the house around noon, which is what we have asked him to do, not come before noon.  But his presence and talkativeness was too much for Dad so I took him  back to his place.  When we arrived, a young man came running through the parking lot, cutting in front of our truck, heading toward the highway beyond the next building.  Then came a young lady running after him yelling that she wanted us to drive her to catch him, he had stolen her keys.
   I am glad I was there because the first thing our Aspie wanted to do was chase after him on his bicycle, but I suggested she call the police and that he let them handle it.  Tim is a protective type, somewhat like the guy in the movie "Blind Side", and he would have done it.  Thankfully she called the police and Tim stayed put.
   This young woman looked to be late 20's or so.  I stayed long enough to make sure she was calmed down and thinking clearly.  She rattled off the story of her pregnant sister who has a restraining order against this guy but he would not leave her alone...  Kinda felt like a Judge Judy show there for a while!  Some friends came and comforted her and I thought the situation was diffused enough to move on.  Before I left I asked Tim to stay out of the situation  because it was potentially dangerous and let the police take care of it.  He agreed that it was dangerous and reminded me once more that he had told me his complex was ghetto.  Yes, it is.  But I hope as long as he minds his own business, he will be ok, for now.  A new location may be in order in the future.

Organizationally Challenged

Today we met with a case worker, a rep from the agency who coordinates services, and the man who works with our son.  The issue we are trying to resolve is helping him to organize his time and stay on a schedule.  Going where he is supposed to go, being at home when the worker comes, and not changing the schedule daily.
  Larry and I spent yesterday afternoon helping him clean his apartment.  It had become a terrible mess because he has not stayed with the schedule.  Hopefully, with a regular schedule, these things will be taken care of  We will see...

Some of Tim's Photography

Tim's life dream is to be a professional photographer.  His Asperger's traits have hindered him greatly in pursuing this dream and although he faces difficulties on a daily basis, he never gives up!  I dare say most neurotypical people would not have lasted so long!  Not able to work or attend college, he has pursued this dream by taking adult education classes, online self study, and research.

   I guess my dream for him is that there would be someone who would take him under wing, as an apprentice and give him guidance that might prove to have a fulfilling outcome where he could at least supplement his income with his love of the trade.

Tim's Facebook Page:   http://www.facebook.com/BIGTIMWEST
Tim's Railroad Photos:        http://home.insightbb.com/~trainrulz/index.htm

Week for Kids With Disabilities

I posted this on my facebook page on Sunday.  I don't especially like the wayit is worded, but the message is clear:

It reads;  People need to understand that children with special needs don't have an illness, so there is no cure & it's not contagious. They only want what we all want, to be accepted. Most of you probably won't copy and paste this. Will you do it and leave it on your status for at least an hour? It's Special Education week, and ...this is in honor of all the kids who need a little extra help & understanding.

Music Man

Music....  Music was the controlling factor in my life for many, many years.  I loved rock and roll when I was younger but I did not like the rigors of playing classical violin.  When I finished college with a degree in music education I laid it aside to pursue another path.  When I married and had kids it stayed on the shelf for the most part aside from singing in church and playing and singing with the kids; "guitar sing" is what we called it.  I would pick up the violin once in a while just to see if I had lost my touch.  When the kids hit their teens, I became even more distant from it.

.....About 2 & 1/2 years ago, I met a group of ladies in Finchville, KY.  I had set up a booth and they had come to the fall festival to play their instruments.  Most of them played the Appalachian mountain dulcimer.  We have a dulcimer that Larry made when he was in college and I had strummed around on it a little, even wrote a song with it when we were first married.  But for the previous 20 years, it had hung on our living room wall.  When they learned this, I was encouraged to take it down off the wall and play.  By this time, our youngest and oldest had moved out on their own and I was open to trying something new.   I joined the dulcimer society and began a new musical journey.  This was something that I launched out on by myself.  I wanted it to be "my" thing to do for me.  That lasted a few months.  Hubby started going when he wasn’t working out of town.

.....In the fall of the following year, my AS son became interested and offered to go and take photos.  I took him with me because Larry was working at night and I figured I was safer with a 7’ tall man and it couldn't hurt.  He attended several jams and took photos.  Those shots are in the "Music" folder in my Facebook pages.  About 4 weeks later, at a potluck dinner, he overreacted to something that someone said to him and became very upset.  Larry ignored him and I encouraged him to go outside and calm down.  The following week, I was asked not to bring him back.    He stayed away for over a year, but attended other music events with us.  Now before you ask yourself, “What kind of folks would do such a thing?”  please understand that Aspies can become very upset by things that would not bother neurotypical people and many of the members are older, fragile ladies.  I could have walked away from the group, but I had been through the same situation so many times, it wasn’t that hurtful;  that, and I really love what I do.  Plus, the person who told me was very understanding and not judgmental.

.....Last year, Larry was working out of town and I began to take him with me on occasion and now he is going every week.  He began to play the washboard and is trying valiantly to learn to play guitar.   He played with us on his first gig at the YMCA adult day center in March. The group seems to have accepted him and it has gone well to this point.  He loves being a part and he works really hard at behaving well.  He does get tired and sometimes waits out the last half hour in the car. 

.....If music therapy had been a program at my college, I probably would have gone that direction.  My mother used to say that music soothes the savage soul and I think that is true.  I also believe that angry music stirs up angry feelings and religious music enhances worship by stirring the spirit.  It is a powerful force.  I have no desire to pursue music therapy right now.  I am working hard at becoming an instructor but I have a long way to go in proficiency.

   

   Our musical journey started out rocky but it seems to be working out.  I hope that someday the public will be educated about dealing with neuro-atypical people.  We carry autism cards to hand out to folks to help them understand what is going on but I don’t know if they really take it seriously.  Some do not want to believe the information.  They just think the person is crazy, rude, lazy, or whatever.  I hear stories on the news every day about people who probably have some kind of disability.  It is scary when they fall into the hands of the police.  Even with education programs in the police department, it has changed very little.

Barn Quilt Trip to Washington County, KY with my Aspie

   This was a beautiful, sunny day and too good to waste indoors, cold though it be.  Larry was going to take Tim train watching this afternoon.  He has come down with a cold so I offered to take Tim so he could rest and recouperate.  When I told Tim that I would be taking him, he suggested we take a drive through the country and look for barn quilts.  That being one of my favorite things to do,  there was little debate over it.   I quickly searched google for the closest trail I could find, which happened to be in Washington County, KY  (Springfield).  I found a newsletter from the county extension office and called them to see if they had a quilt trail map, which they did.  So off we set for Springfield, to get our map and photograph as many barn quilts as we could find in a couple of hours.
  Well, orienteering is not one of my strong points, so of course, we got lost.  Thank God for cell phones!  I called Larry and told him where we were and he told us how to get back to where we were trying to go!  Actually, Tim has a better sense of direction than I do and he was questioning me the whole way, which really  helps my inept skills.  What can I say, even with a map, I get lost!
   We got back on track and took several photos along the way and the following is a digital photo map of where we were.  All of these photos were taken along 31E and Highway 150, between Bardstown and Springfield, KY.  If you get out that way, stop and see the quilts.  There are many more to see so I plan to return again, next time with Larry to orienteer!
I hope you've had a good laugh at our little adventure, that's what I called it to help keep from getting angry!

This is Tim photographing from an overlook along 31E between Mt. Washington and Bardstown, KY.

 

The 4H along HWA 150 

 

 

Standing Flower Quilt

County Board of Education