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Friday, November 13, 2009

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.

Tuesday, November 10, 2009

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.....

Friday, November 6, 2009

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.....




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Hi, I am Teri West, a wife, retired home schooling mom, 2nd year breast cancer survivor, crafter, musician, and primitive artist living and working in Kentuckiana, (the Louisville, KY and S. Indiana area). My family heritage is in the hills of Eastern Kentucky and Southern Ohio. I grew up in Louisville, Ky and attended Eastern KY University and the Southern Baptist Theological Seminary, graduating with degrees from both in education. I married in 1979 and have three grown children, one a degreed artist, one a techie/artist, and an autistic one, a photographic artist. Hubby is a techie. I work out of my home creating primitive items for friends, family, and you. My loves are American folk music, primitive crafting, and American folk art which all emanate from my devotion to my faith, family and friends. I belong to the Louisville Dulcimer Society and I play mountain dulcimer, guitar, violin, native flute, tin whistle, bowed psaltry, and ukelele as well.