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

Help has arrived...at least a little...

We finally have a few services that we have never had.  After getting onto the Michelle P waiver, we have gotten someone to visit Tim, help him clean his apartment, take him out into the community, etc....  This is great!  I have a few more minutes to myself!!!

Past to Present to Past....AGAIN

The past...I thought that when kids grew up, they grew up.... but the neighborhood bully proved today that he has not. Trying to provoke a disabled person is common in kids, but adults? It is insane! He grew up and lives on the same street as his parents!
Summers were a time of frequent conflict with the kids on our street. Most of them were boys, which made the social competition intense, to say the least. I was always happy to see August come and the kids go back to school. Not because mine would be traipsing off, but because the rest of them would and that meant more tranquility. We had to look for friends in other places such as church and our home school support group where adults were present to mediate and redirect. Even if there were conflicts in those places, the structure made for a better social experience than just hanging out with other kids and little or no supervision. Children left to themselves tend to be merciless to one another, and especially to one who is different. How sad that some adults do the same.

Present to Past....

......The present.... It has been nearly a week. I survived a challenge that I hope never comes my way again. I have been reading a book titled "Codependent No More". I have had this book for 10 years at least and this is probably my 3rd or 4th reading, I do not remember exactly.

.....I believe in Providence. It was no accident that I picked this book up again. I read through it completely in about 3 nights, then I began to go back, chapter by chapter, and do the exercises given at the end of each one. This is something I did not do in past readings.

.....Being a caretaker means that I am a codependent. All that means is that I am someone who is in close relationship with someone who suffers with some kind of disability, whether it be one that is self inflicted, such as drugs or alcohol, or one that was given the person through some other venue such as genetics, physical or emotional trauma, or some unkown source, as it is with autism spectrum disorders.

.....How I respond to the effects of that relationship is where I have to keep vigil on a moment by moment basis because things can go awry in a split second and leave me feeling a multitude of different ways, depending on the event which takes place.

.....Last week, we had an episode that involved an unfriendly neighbor and 3 policemen in their cruisers. Our son was confronted by the neighbor and exploded with vulgar language in an angry tyrade that shook the court. The neighbor called me with threats and I assured her that I would do everything I could from my position to diffuse the situation. Then the police came to our door, which terrified him. I thought they were going to arrest him and so did he. I related to them that I had spoken with the woman and settled it as best we could.

.....I had a residual ache and sadness in the pit of my stomach for the remainder of the week, even into the weekend. There was nothing to do but just "feel" it and wait until it subsided. I had no idea when I married and had babies that I would someday be facing these kinds of things and feeling the horrible way it feels when they happen. My husband worked out of town last week and I was totally alone in the whole mess.

.....I started this blog to help myself to deal with what I have experienced, knowing that there are many others out there who have "been there and done that" and there are those who have younger children diagnosed with Autism in one or another of its forms who may learn from my mistakes.

.....Back to the past..... ..... School was always hard for him but he worked like a trooper to do the best he could and we were happy and proud that he accomplished what he did. By the 8th grade, he was behind in math but his reading skills were on target and we found a cottage school offering a new program for kids with learning disabilities and we hoped that it would work for him. It was a very challenging program the required our assistance and it lasted only one semester. He worked hard and did not complain about the school work, but the problems came when the kids were left to eat lunch without adult supervision on a few occasions. Some of the boys were physically roudy and he, being larger than the other boys, got too rough with one child. Other accusations were made and we were asked to take him out of the school. We tried another private school program but due to my husband's job loss, we brought him home. We found out later that the headmaster of the school had molested some of the boys, so we consider it a blessing to have gotten him and his brother out of that school. That was the last of our dealings with private education for him.

.....I continued to teach him at home until he was 17. He decided then to pursue a GED and we encouraged hm to do so, using GED workbooks. When he was 19, he was evaluated for a vocational program where he tested a very high 12 grade, 9th month level in reading but a dismal 5th grade level in math. We thought he was dyscalcular but have since found that he has dyspraxia, which involves almost anything involving motor skills such as writing. He has never had good handwriting and math obviously requires a great deal of it to work out problems on paper and it creates a great deal of anxiety, causing him to either get act out or quit. We had used a computer at home to adapt for that need but the adult GED classes required handwriting. He still has not acquired the GED and as years go by, becomes less interested in it. All of his evals with vocational rehab have been negative, so training and holding a job is not an option at this point, but we would like to see him get the GED.

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

INTRODUCTION PART 1

.....Hello, I am Teri, and this is my blog about being the mom of an adult child with Asperger's Syndrome. Of all the elements in my life, this is by far the most challenging and sometimes the most rewarding part. If you are the parent of one an Aspie, then you understand what that means, some days are diamonds and some days are stone. .....If you are an Aspie, then I hope that you will better understand your parents and the people in your support system as they live alongside you with this wonderfully confounding disorder.
.....I suppose I should start at the beginning because that is where every good story starts, but our beginning with our son was not like the one we had with our daughter who was born 2 years and 8 months before him. He came into the world weighing 10 lbs. and 2 oz. and the local cafeteria could not have kept him fed. He wasn't a fussy baby, he slept well and through the night at about the age of 2 months. He lost about 1 lb. of weight the first week and we began supplementing nursing with baby formula, which he downed like a pro and began to regain weight rapidly. He grew at a phenominal rate, always way off the growth chart the pediatrician kept.
.....At the age of one, we changed to a lowfat formula, (which I wonder if that could have been a mistake and may have contributed to the weight problem he has today). He developed normally as a toddler except for his speech. He had quite a vocabulary that only a very few of us could understand. He had frequent bouts of ear infections which we expect had much to do with his speech. When I took him to see the ENT, the fluid would have cleared up. The doctor refused to put tubes in his ears for that reason. If I had it to do over again, I would have taken him to another ENT for a second opinion. At the age of 4, with the aid of a wonderful speech therapist, his speech became even with his age.

.....It was at about the age of 4 that we began to see him having difficulty playing with other children. He played well with one friend at a time, but when he was in a group, the problems mounted. He attended preschool two days a week and was well behaved for the most part but began taking food from other children when they gathered in a lunch room as a group. By the age of 5, the neighborhood children were either shunning him or teasing and calling names. We had to arrange activities for him to be with other kids that were controlled, usually with our home school support group activities, church, or family friends.
.....We had chosen years before to educate our children at home, so when Kindergarten time came, it was obvious that he was not going to flourish with a traditional curriculum and I began searching for ways to teach him. Almost everything had to be made to fit. We spent the first years of his schooling using adaptations to help him to learn to read and write. To discuss the entirety of that would be a whole new blog, so I won't go into detail about how and what we did here.
.....In spite of his learning disabilities, he had an almost adult vocabulary and people often commented that they could carry on a conversation with him unlike most children his age.
He was far above his peers in his use of language even though he could barely read and write.
This caused even more problems for him socially, as far as his peers were concerned.
.....When he reached 10, he and I became sick with a flu like illness. At 4 am one morning, I was up with him because he was coughing incessantly. He was lay on the lazy boy, about to go back to sleep, then began to go into seizures. He was transported to children's hospital and seized repeatedly throughout the next day. After many hours of tests, they gave him an anti-seizure medication which stopped them. He came home two days later and was placed on Dilantin.
.....It was over the next few months that we noticed a change in his behavior. He was much more anxious and irritable than he had been. When we visited the neurologist about 6 months later, I asked if the medication could have caused this change. He was then put on Tegretol. The Tegretol controlled the seizures just as well but the behavioral change, though somewhat improved, persisted.
.....At the age of twelve, after an inappropriate outburst (or a meltdown, as some call it), we took him for a psychological evaluation. He was diagnosed with depression and placed on zoloft, which worked very well for him. He probably was at his best for the next 2 years. Then things changed.
.....When he was fifteen, another family member was hospitalized and diagnosed with bipolar disorder and his doctor thought that he might have it also. He was then placed on Depakote and Clonipin. At his next visit with the neurologist we were told that Clonipin could cause a loss of inhibitions so that was changed shortly thereafter to Zyprexa....and thus goes the rest of the story. We have spent all the years hence trying to find a combination that works best for him.
.....more to come.....