Not My World
Oh, my goodness! I do wish that I had a dollar for every time that I heard, “Well, he’s X years old now! You need to stop doing so much for him! He needs to take care of that for himself!!!” or, “Well, he should be doing X by now!” I’ve got to tell you, in the beginning, it really hurt, a lot, but as the years wore on , I developed the attitude that “Well, if a frog had wings, he wouldn’t bump his butt when he hopped.” Guess what. That’s not the way it is. Welcome to my world.
I remember so well the day that my Mother looked at me and said, “Brenda, you need to set him up in his stroller. He should be sitting up by now. If you don’t do that, he never will sit up.” Well, it seemed odd to me. I really knew little to nothing about babies but honestly, I thought that any living thing would naturally grow and begin to sit up or roll over or crawl or walk as the time unfolded for that to happen. I did begin setting him up and soon, he started sitting up on his own. It was a little late… I just accepted that it was my fault like almost all of the Mother’s of autistic children do. Almost everyone implies that all of our children’s difficulties are our fault. We usually just silently accept our psychological flailing and move on. Over time, we feel responsible for every bad thing that happens in the entire Universe. Interesting, if we were that powerful, we would be a god.
Lucas had never been too interested in rolling over or playing with the lovingly chosen crib toys that I had selected and bought. I was so excited to be getting this baby! I had not had the desire for a child until I was 35 and the odds of still having one were pretty slim and yet, here he was! I was in awe! The entire time I was carrying him, I was preparing to be the best Mom in the world. His crib toys were intended to stimulate him intellectually while still providing endless hours of playtime. I ordered special, expensive toys. I’m not sure why, because once he got here, he was seldom in his crib. He cried endlessly if I put him in there almost from the moment he came home. He simply would not be alone. I tried letting him “cry it out” one time. It was absurd. From that moment on, he was in my arms or on my hip. I learned to do everything from cook a meal to water my flower garden holding my baby. Of course, when he wasn’t crawling, it was my fault for holding him too much… Truth is, a lot of autistic babies never crawl. When they get ready, they just get up and walk. That’s what Lucas did. At 10 months he took his first steps but didn’t walk again until he was about 1 year old. People were slightly obsessed with the fact that he didn’t crawl, again, my fault.
Earlier milestones such as smiling and copying facial expressions were on time but the fact that he seemed uninterested in most toys was unusual. Most babies start making some verbal progress at about 6 months by making “ah” or “oh” sounds. Lucas did these things so seldom that if he did, it was a real surprise. I remember when he was 12 months old, he said “BOM”. Nobody knew what he wanted except me. He wanted a “B”ottle “O”f “M”ilk. At 12 months, he was a little behind in his speech and the trend continues to this day. Communication is so difficult for him, even after graduating from college, that it’s a handicap. Interestingly, he could give excellent presentations in college and get good grades. The reason is that a presentation is not true communication. It is a presentation of facts which autistic people are sometimes very good at. It doesn’t require nuance and perception of the feelings and thoughts of others, just the facts, and Lucas remembers facts.
Babies usually point to the things that they want at about 9 months. Lucas did not. Much later in life, at about 10 or 12 years, he found his “point” and I was thrilled. He had never done it before. Neither did he look where I pointed until about the same time. It’s a small thing but it is a bigger part of the human experience than we know until it’s not there.
Most babies will “help” when you dress them at about 1 year. Lucas did not. Whenever I dressed him, he just lay or stood like a mannequin. He never pulled his arm out of the sleeve or pushed his leg into his pants. It was like dressing a doll.
He never shook, banged or threw his toys like most babies at 1 year. He did not wave good-bye. He didn’t pull up on furniture and always, the message was clear from so many, it was my fault.
Around 18 months when most toddlers begin to hand toys to others to play, Lucas would have an all-out melt down if anyone took a toy from him. He was not remotely interested in social play. In the church nurseries that he attended, that was always a problem. I was an only child and didn’t really understand the significance of that behavior. I thought that the teachers should make the other kids leave his stuff alone. I didn’t know that the others were beginning to socialize. Some of the others were saying single words to communicate with other children but not Lucas. He was isolated in his own world. When snacks were served, he always wanted to eat with his hands regardless of what the snack was, again, this was a problem. They assumed that he ate like that at home. He did not. I bought expensive children’s utensils and he used them. What I didn’t understand was that he was beginning to lose some skills already. A lot of autistic children acquire skills only to lose them very soon. It’s hard to watch them lose ground but so often, we do.
About 2 years of age, when other children were getting excited to be around kids, he was not. He didn’t want to be left with groups of children. He wanted the familiar, his room, books, T.V. shows, games and Mom. He didn’t seem to understand why I was “abandoning” him to rooms full of children. It never went well.
When he was 3 or 4, I became aware that other children were dressing themselves! I was shocked! No matter how many times I showed him how to put on his pajamas, he just would not do it. It seemed to confuse him. He seemed to simply not understand the process, so I would dress him myself. This was the case for years. Finally when he was just getting too old for Mom to be dressing him, I just told him to do the best he could and left him to it. It took FOREVER! I had to allow as much as an hour for him to get dressed. It made us late everywhere we went. No matter how much time I allowed, there would almost always be an argument because nobody understood how hard it was to get an autistic child ready to go anywhere and they would be mad when we finally arrived. I well remember my grandmother’s anger at Christmas when he was 2 years old. He had fought me relentlessly that day. He didn’t want to get dressed and certainly didn’t want to leave home. He had some new stuff and going to Maw Maw’s seemed absurd to him. Leaving home always took a long time. He always wanted to do “one more thing” before we left.
Around the age of 4 or 5 when other children were role playing, he did not. I have never seen him role-play. He never played “Power Rangers” or cowboys and Indians or army or anything else that little boys might play. He never pretended at all. He has always been literal minded and that is so obvious in the absence of role-playing play. When he was in college and played characters in musicals, it was a delight to see him in his costume in character. He didn’t have speaking parts but he did stay in character and it was fun to see him enjoy that. The professor that worked with him on that is dead now and I remember her with great affection. She was a strict disciplinarian and enforced high standards on her students. Lucas complied. I remember those as the best days of his college experience. She was a choir director and the choir was formal. He would walk out in his tuxedo with that beautifully dressed group of young people and for a moment, he was just one of the crowd. When the event was over, however, while the others were leaving together, Lucas was with us. Nobody ever asked him to do anything. It was just as well, I suppose. Some of his college “friends” wound up in jail.
One of the most specific developmental milestones that most 5 year olds reach is the desire to please friends or be like them. He has never cared. Again, that’s not all bad. Peer pressure gets a lot of kids in terrible trouble. I have not dealt with that.
About this same time, a family member thought that he should be in sports so I enrolled him in T-ball. Oh, dear… It was a disaster. He hated the hot, black polyester uniforms that baked the children in the hot, humid Alabama Spring. He hated the sun. He hated the noise. He didn’t want to run. He hated his Coach. The family member that had encouraged this nonsense came to one game, saw the Coach dragging my screaming son all over the field to try to force him to conform and never came to another one. I let Lucas quit that dastardly team. It was horrible. I didn’t blame him.
We were living out in the middle of nowhere in rural Alabama, miles from any grocery stores or doctors when Lucas was about 15. Although I had wanted to move into the small college town nearby, it was looking like it was not going to happen. I was not about to get old and die out there in the wilderness and leave this autistic boy unable to drive. While other 15 year old kids were begging to drive, Lucas absolutely did not want to. I insisted. I asked other family members to teach him and even tried to take him to a driving school. Neither happened, so I taught him. There was more than one day that I questioned my sanity. We did have some adventures! He learned and got his license but he all but refuses to drive. It scares him. We moved into the middle of town to accommodate that. Now he can walk almost anywhere he has to go. There is bus service available and if he chooses to drive, it’s not very far. That special day where your kid gets his license was a non-event. I was thrilled, believing that, with God’s help, I had achieved the impossible, Lucas was mortified, fearing that he might actually have to drive sometime.
Throughout college and for a while afterward, Lucas wanted to get married. He really didn’t understand the concept of courtship or wooing a girl. He has always thought that he would just meet a girl and they would get married. It has not happened and he is sadly abandoning that idea. For many years, I was also blamed for that. Never mind that I taught him to drive, bought him the clothes, talked to him endlessly about how to act in public, tried my best to make him realize that basic cleanliness like having your face washed and your teeth brushed DO matter and even tried to “fix him up” a time or two. Oh yes, let’s not forget about pushing to get him a good, pretty car that he didn’t want and won’t drive… I did all that I knew to do to help him but still got the blame when it didn’t happen.
Lucas is 26 and I still care for my son. I love him with all my heart and think that he’s pretty awesome. He’s highly intelligent and I understand him. If you find yourself facing the wrath of the world because your child, THEIR grandchild or THEIR nephew or niece or THEIR student does not hit the milestones, remind them of the frog. If he had wings, he wouldn’t bump his butt when he hopped. He doesn’t. He’s a frog, exactly like God made him and he’s supposed to bump his butt. It is what it is. Love these kids for who they are. Do your best for them but always remember that they are different, and some of that difference is wonderful.