Category: Lost in The Spectrum, A Mothers Story of Raising an Autistic Child

Lost In “The Spectrum”: Educating My Autistic Son

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“Baby Mickey’s Red Ball”

When I first found out that I was pregnant, I was overjoyed. I had a miscarriage the previous year and being pregnant was an answer to prayer. I made all kinds of plans and had high aspirations about how I would educate my baby. I had always made good grades in school and loved to learn and my ex-husband had also. It was the one thing that we had in common, we were both geeks. We decided that we would read to the baby as soon as he was put into our arms and we did, not in the delivery room, but when we got to our regular hospital room. I had chosen the Disney book, “Baby Mickey’s Red Ball” to read first and as soon as they brought Lucas to me, I read. He seemed enthralled, a little too much for a newborn baby.

As he grew, we both read to him a lot. By the time that he was two years old, he was reading to us. I am not talking about memorization. I am talking about presenting him with reading material that he had never seen before and he read it to us, at the age of two. I had a Great-Uncle who was both fascinated and terrified at this amazing feat. At the age of four, we were visiting with my Great-Uncle and Aunt and Lucas read a newspaper that was laying on the dining room table. I’ll never forget the shock on my Great-Uncle’s face. He was a highly intelligent man who worked for the Agricultural Department and he was astonished.

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The Basics

I was working with Lucas at home because I wanted him to be advanced academically. I was teaching him his numbers and ABC’s. Once he grasped the pattern of our number system, he could count indefinitely. I remember him counting to 200 sitting on his potty for training. He began counting to 300 and I realized that he “got it” and never had to address that issue again. He was two.

Teaching his ABC’s seemed almost ridiculous. He was reading, but he did need to know how to spell, so it seemed to be a reasonable pursuit. Little did I know that he could already spell anything that he wanted to spell. It was very unusual.

This fascination with letters and numbers and advanced reading ability at such a young age is called hyperlexia and many autistic children have it. At the time I thought he was just brilliant, and he is. He is also autistic.

Pre-School

I mentioned his pre-school in my previous article. I had to go right back to the facility within hours of dropping him off at school. He was laying in the floor in the fetal position screaming to the top of his lungs. A few days later, a boy advanced towards him on the top of the slide in the little covered playhouse at the top. The boy was imitating the children’s show, “Power Rangers” and Lucas did not understand what he was doing and pushed him off the slide to the soft sawdust underneath. The boy was not hurt but Lucas was suspended. A few days later they were to convene in a meeting of “The Board” to determine if they would allow him to stay in school. I took him home and told them to forget it. I did not want him in a place where he was not wanted.

Kindergarten

About this time, a friend looked at me and said, “You’re going to home school this one aren’t you?” I desperately wanted to do just that, but had no idea about how to go about it. I knew that he was academically advanced and emotionally behind and that public school would not support his advanced intellect and that he would be bullied relentlessly. The school that he would go to was notorious for bullying by children and staff alike, and there was NO WAY that I would allow that to happen to him. I began to investigate home schooling.

After choosing the curriculum and informing family members about our decision to home school Lucas, I began using the workbooks provided. “Friends” and family alike were in a rage about Lucas being home schooled, as if it was some of their business. They had never watched as he was treated like an outcast by “a good Christian woman” in a room full of “normal” children. They had never seen people laugh when he read the words to a song from the church hymnal, thinking that it was just a memorization. They had never seen a 18 year old boy scream at him in the church parking lot until he ran to the car crying. They only knew that they wanted him to be like other kids. You know what they say, “Opinions are like (body part), everybody has one.” I have also heard that you can wish in one hand and urinate in the other and see which one gets full the fastest.” and “You can’t always get what you want.” as spoken by the great Mick Jagger. People who supposedly readily accepted the will of God in their lives were simply unwilling to accept the fact that the same path is not necessarily the best path for everyone. I home schooled him anyway.

The truth is, we pretty much just jumped right over kindergarten because Lucas already knew all of that. We went right to the first grade studies and the work was incredibly easy for him. By law, you only have to spend a few hours per day in actual studies and even that was not necessary. After he saw the material one time, he had it. The worksheets and tests were a breeze. I had been right, he would have been held back in the public system. Book knowledge came easy for him.

The Grammer School Years

We were able to join the YMCA and swim most days. Lucas is a great swimmer. He took lessons there. We bowled and hiked and took vacations and all the while, his curriculum was with us. We might study in the park one day and at home the next. Those days were the easiest days, not easy, but the easiest. We were not under pressure. Lucas still cannot handle stress well. Home schooling was great for him.

High School

As he neared the end of his mandatory years of study, the work got harder but he still excelled. He took his ACT and aced it with a 27. As a result of that test he was awarded a full Faculty Scholar scholarship to Jacksonville State University where he chose to major in General Music and Minor in Communication, (NOT Communications). Communication studies are mass communication and Communications is more technology oriented.

University

Lucas is a gifted pianist. He had lessons from the time he was 6 years old throughout his life and he excelled in his music. The Communication studies were just as easy for him. He could easily present a paper to an audience of 2 or 200 with no qualms. He was creative and resourceful and used Apple T.V. and Power Point and all kinds of technology to present to his class. He gave personal recitals and played in “Concerts and Recitals” for the staff and students and always got good grades. He graduated with Honors at the top of his class and went on to pursue his Master’s Degree. All of this was on the time table recommended by the University. He got his Bachelor’s Degree in four years and finished the Master’s program in two. It was pretty amazing to see. What no one saw was the endless shopping that I did, buying him everything that his heart desired, just to keep him sane. Those six years cost a fortune. The stress of a State University was too much for this autistic young man and he began to deteriorate mentally. By the time that he finished the Master’s program, he could not even pass the Comprehensive Exams. He walked in graduation but that was all. He never earned his Master’s even after successfully completing the course of study with mostly A’s and a few B’s.

While it is amazing for an autistic child as affected as Lucas is to earn a Bachelor’s Degree and finish the Master’s program, if I had it to do over, he would have never gone to University. His degree seems to be worthless. No one will hire him. He had been a church pianist before going to college at age 16. He did that again for a few months after graduation but he didn’t need a degree for that. The stress of college changed him in an undesirable way. The pressure of keeping his scholarship with high grades, along with the stress of performance and social pressures that he just could not understand, was too much for him. His behavior became erratic. He never thought about his actions before performing them. He became depressed and sullen and the social structure that was foreign to him due to his autism made him feel like a stranger in a strange land. An autistic girl struck up a friendship with him only to end it abruptly when her Mom disapproved. The loss of what he thought was the only friend he’d ever had was too much to bear on top of the rest of college life. He changed from a light-hearted gamer to a sad and lonely young man. He got his degree but lost so much more. He would have benefited so much more from a good trade school where he could have learned to do something useful. As it is, he is unemployable.

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Lessons Learned

As the old adage goes, “Hind sight is better than foresight.” I truly believed that Lucas would “fly” in University. I knew that he was intelligent and gifted. I figured that he would wind up being a geeky college professor like the character in the Disney movie, “The Absent- Minded Professor”. Instead, he had a breakdown. From what I understand, students do occasionally suffer mental breakdowns in college. I know of others who have had that experience who are not autistic. With his limited reasoning ability, he just could not make sense of the whole experience and with academic pressure and pressure at home, which has since been eliminated, he collapsed. Now, I advocate for him to have insurance, some income and a secure future. All that we can do is the best that we know. Nobody is perfect. The thing that I want you to remember is this, “Do your best. That’s all you can do. Your best is not the same as my best or anyone else’s best. It’s YOUR best. We are all imperfect and work with limited resources, both financial and otherwise. Once you’ve done your best, rest. That’s all that you can do.”

Love to all,

Brenda Sue

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Lost in “The Spectrum”: Autism and the Angry Baby

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The Beginning

First of all, I want to say that everything that I say in this series of articles about raising an autistic son is my experience alone. I am not suggesting anything for you or anyone else. I am speaking about my experience only. It has been interesting.

I had an easy pregnancy that culminated in a scheduled C-section. It was also easy, no labor, no pain, nothing remarkable. I was terrified at the responsibility that I had brought on myself, by choice. I dearly wanted and loved this precious soul that had been entrusted to my care. I was a nurse but I couldn’t bear to leave my son, and my then husband wanted me to stay at home with the baby, so I did. We moved into the house with my parents shortly after his birth for about 8-9 months and one day I was in my Mother’s upstairs bedroom talking to her, holding Lucas, as usual. I almost never laid him down because when I did, he cried a lot. He didn’t cry himself to sleep. He just cried like he was furious. Since I was thrilled to have him with me, carrying him around seemed completely normal. He had my undivided attention. During this conversation with my Mother, he hit me hard. It was a deliberate blow. It seemed that he did it to get my attention, and he did. My Mother said, “Did that baby hit you?” and I said “Yes, he did.” She said “Brenda, something’s wrong.” I knew in my heart that she was right. It was a strange thing and I had never seen another baby do anything like that.

Expressions of Anger

We were living way out in the country in rural Alabama and I had grown up there, so lonely, so I was determined to take Lucas to town at every opportunity and find something fun for him to do. I took him to “The Imagination Place”, an educational, interactive museum in downtown Gadsden when he was less than a year old. It had displays for every age group and he grew up going there for years. We frequented parks and playgrounds of all sorts. We joined the YMCA and he took swimming lessons. We were always on the go. When he was still just a baby in the car seat in the buggy in Walmart, he would scream so loudly that people would come from all over the store to see what was happening. I always said that there were two kinds of people that did that in those days, the ones (who usually had NO kids…) who said, “If he was mine, I’d wear him out!” and then there were those with DHR on speed dial on their flip phone, waiting to see if I was going to do just that. None of them had any idea of what they were seeing. They just knew that their shopping trip had been disrupted by a screaming baby. In Walmart, he was always screaming. We went anyway. No way was I going to stay at home. Quite often autistic children, and their parents, are lonely and isolated because of the behavior of these kids.

His dad noticed a behavior that had escaped my observation because they interacted differently from Lucas and me. His dad was more physical with him, like men often are with babies. He would lift him up in the air and “fly” him around. He would play with his toys with him and make funny faces. I noticed one night that his dad was making a grunting sound and laughing. When he saw me looking at him he said, “He sounds like he’s mad! If I touch his toys or make a face or fly him around or anything he says “Uh!” like he’s mad!” His dad was making that sound back at him. Again, it was odd. I had never seen a baby get that mad about things like that. His dad’s behavior was appropriate. He was merely playing with Lucas, but it angered him and he was quite verbal about it. I told his dad that he probably shouldn’t make him mad. I didn’t know what to think of the whole thing.

Exclusion and Expulsion

As Lucas grew, so did the anger. We catered to him, spoiling him with everything that we could think of that might give him a diversion. Most of the time, he was content but when we went out, he got angry. Lucas and I accompanied his paternal Grandmother to a doctor’s appointment in Birmingham, Alabama at The Kirklin Clinic one time. The drive was not pleasant and neither was the company. My Sister-In-Law had brought her son who was two years older than Lucas and they didn’t get along. By the time we got to the Clinic, Lucas was fit to be tied. As we sat in the waiting room, he became hyperactive and when I tried to keep him from bothering the other people in the room, he screamed, loudly and for a long time. We were thrown out of The Kirklin Clinic.

About that same time, I took my 14 year old step-daughter to a teen line-dancing party one night at a teen club. Lucas would not stay off of the floor and screamed like a banshee when I tried to keep him off of it. There was a rule about the age at which children were allowed on the floor and two was underage. It was to keep them from getting trampled. As he screamed and screamed, he upset the whole building and again, we were asked to leave.

At the age of 3, I reluctantly enrolled him in daycare. I had a bad feeling about it. I left the church in tears and went home. In about an hour, the head of the daycare called me to come back. Lucas was lying on the floor in the fetal position, screaming. I took him home and day after day, took him back and sat in the hallway waiting until the inevitable meltdown. It always came. Then one day another boy aggressively approached him on the top of the slide with moves from The Power Rangers children’s show. Lucas didn’t know what he was doing, and as the boy swung wildly at him, Lucas pushed him and the boy fell to the ground, unharmed. It was a short fall onto sawdust, but it got Lucas into trouble. At the age of 3, he was suspended from daycare until the Board could meet and discuss whether or not to allow him into their facility. I said “Never mind.” and took him home. I did not want him to be in a place where he was not wanted.

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Pardon the condition of my picture. It survived a tornado.

The Chosen Path

There were many instances of exclusion and expulsion. He was seldom included in other children’s plans, never invited to a party and never, not one time, ever asked to come over to another child’s house. The behavior of the adults in our lives was horrendous. Only cookie-cutter children were given those privileges and Lucas was not a cookie-cutter kid. He was autistic and he was ostracized. My heart broke for him. Although he was autistic and did not understand social norms, he still had the heart of a child and wanted to be with other children. I must say that the love for my child kept me in church for years, because church was the only place that had to accept and include him. I did every job that you can think of in churches while he was growing up. It gave him a circle of friends that were taught to love others. Some of the time, the children were kind but Lucas was actually psychologically bullied by a couple of adults, church leaders who thought that his anger was funny. I told them specifically what I would do for them if they ever provoked him again. It stopped. I home-schooled him to protect him and to encourage his natural gifts, which are profound. He scored 27 on his ACT and went to college.

I had to advocate for my son in ways that I never thought should be necessary because a lot of people in the general public are either idiots or simply uninformed about autism. Autistic children are not brats, they have a developmental disorder and I frequently had to “educate” others to this simple fact. If you are raising an autistic child, know this, your child is not a brat, is not demon-possessed and can’t help most of his behavior. Social moors are nonsensical to him. Imagine what the world would be like if you really thought that nobody noticed if you didn’t wash your face or brushed your teeth or you thought that nobody could see you if you picked your nose. What if you thought that nobody heard you talking to yourself? What if you walked with one foot turned out so far that you tripped other people around you? What if you really thought that the sky was falling if you looked up at it so you just never did? Did you know that all musical C’s are green? Knowing the color of sound is called chromesthesia. My son told me these things and much, much more and still does. His world is not like mine. He graduated college, with his Bachelor’s Degree, on a wing and a prayer but could never pass the Comprehensive Exam for his Master’s Degree. That’s way down the road in this story. There’s much more. I am still caregiving and he is 26 now. I do it alone, by choice. It’s part of advocating for him and the journey is ongoing. It’s necessary to be as healthy as I can possibly be so that I live for a very long time, in good health. I work full-time and arrange therapy and other necessities for my son. If you live this life, take care of yourself. Your child is depending on you.