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.
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.