Asperger's and Girls (16 page)

It was during that time that I almost began to understand what I was doing to them. I began to understand that they needed more than I could give them, so I went back to school and became a Registered Nurse with the intent of becoming a midwife. The miracle of each child’s conception and birth is what led me to this career choice. The caring and compassion of the first doctor and his wife led me to want to be around people like that and become a person like that. I had no one helping me with career choices; there were no services that could help me to understand or decide what I needed to do in life or why I was making the choices I was making, no one to help me understand myself. My logical side knew I now needed to be a provider, but the curious side wanted to learn about the body and birth, and to be the kind of mentor others were to me. Not realizing how difficult social relationships were, I was setting myself up for failure from the beginning. Not realizing how certain environments affected me physically was also going to lead to problems I was unable to plan for.

It was during that time in my life that I began to feel completely lost as to what I really wanted and needed in life. I wanted to be a wife and mom but relationships, I finally began to admit, were impossible for me to figure out. I gave up on that plan.

Working on a career was much easier compared to working on relationships. There were steps, routes, degrees, and road maps to where I wanted to go. The road maps were then written out for me and I began running on those paths.

In one way, I was gaining confidence and what some might call self-esteem. I was beginning to learn about other cultures and other worlds that I had not known existed. I began to open up academically and wonder why grade school and high school had not been as interesting. On the other hand, I was failing at the one thing I thought I knew how to do naturally: mothering.

It was at this time in my life I had the opportunity to meet other teenage girls who had given their babies up for adoption. I recall how angry I used to get when my friends who had babies around the same time as I did, gave their babies up. This was different, though. The girls I met were not the same; somehow they were different than the girls I had known. They seemed to have come to terms with their decision because of the child, and not because of their own feelings. This was a concept I had never thought of. It was about their choice to give their child a better life than what they had to offer it. It was not only about age, or they that were going to lose their freedom, it was about college funds, two parents, and a home that they could not provide. My life was changed forever by their stories. For the first time ever I began to be able to comprehend there was perhaps another perspective than my own. It has been more than fifteen years since then and I am just beginning to realize there is always a different perspective than my own—a perspective that I cannot imagine but have so much fun trying to discover, when I have the energy. People are like puzzles to me, that is the fun part. It is also the part that leaves me baffled because I am unable to put together my own puzzle, called “my life.” One situation can haunt my mind for hours and days, and linger on for months before I can come to a satisfactory solution and am able to move on. Sometime I have to put it in a room in my mind similar to unsolved mysteries. One day I may get the right clue, evidence, or material, to help me figure it out. During this time of my life, a single mom of two wonderful children, I put the file called “marriage” or “relationships” in that room and worked on my career.

For the first time ever my children had to have a bedtime, because I had to get homework done in the evening and was only able to do so if they were sleeping. I was truly amazed at the difference in their academic work and some of the behaviors at school. My son was the one with challenges and problems with his “behavior” that I never understood. I had no problems with his behavior. The fact that I had no expectations may have been part of the reason. At the time I thought it was the teachers because he would have a good year, then a bad year, followed by another bad or good year. He received special education for a short time but his grades were good when he had a good year. He was diagnosed with ADD/ADHD according to the school and we tried medication. It made him different but did not help at all. The teacher for that year must have been a different kind of teacher, because she admitted that based on her experience, it was not ADD/ADHD. She had her own children and several students with ADD/ADHD. If my son had it, then she would have seen the difference with the medications. She could not tell me what other options I had or what else it might possibly be. Knowing there was nothing “wrong” with my child, other than school, I was not serious about looking for help. I was never his advocate. I did not know how to be.

Even though I had given up on relationships, they did not give up on me. I met and married my second husband through a series of events that I could not have predicted or planned, and another miracle entered my life. He was my hero, my knight in shining armor, he came to save me. Our dreams were similar, and he knew how to obtain them. Soon we had our first child, my third, and another boy. From the very beginning, this pregnancy was different. The doctors were questioning the functioning of my thyroid because of physical ailments that started before the pregnancy. I was in my late twenties and thought I was just getting too old to have children. My heart would race for no reason, I felt like throwing up almost always. When the pregnancy was found, they dismissed these as conditions related to the pregnancy. I needed to sleep always. Fatigue took over my life and I was barely making it through the days. The day the baby was born, I woke up, and was overjoyed with all that I had.

Each day afterward was filled with constant confusion. The baby had more energy than anyone else in the house, needing less sleep than any of us, and wearing on everyone’s nerves. I was confused with the way my husband treated my other children; he was always teasing them. My daughter learned quickly to tease back, have a tougher side, and not to let whatever he said affect her, but my son could only pretend. Perhaps that was the hardest part for me. I was constantly told this was “the way” men do things but it never felt right to me. I never really understood the act of teasing if it hurt someone.

The teasing spread to include everything my son did; he could do nothing right, and every time he made a mistake, I would of course reprimand him. He would lose privileges and his allowance until he wasn’t able to do things or go places. Finally, after our second baby was born, my fourth child, I took time off work to help all of them and the solution for him came to us in the form of mentors from a local church. A youth pastor volunteered to be his what I now call “faith brother.” Soon my son had several adults in his life and he began to flourish as long as he was not at home.

Working on my career was still relatively easier, more structured, and a part of me wanted to focus only on that aspect of my life. The demands of a house, four kids, and a husband made it almost impossible to do it as well as I wanted to, as well as I knew I could. For a short time I was able to maintain a balance, but right before my fourth child was born, the third one began having medical problems, seizures, infections, illness, constant runny nose, and keeping a babysitter was a serious problem. I had to change my schedule and positions more than once in order to be available to my family and take care of the child no one would watch. Reminders of the problems I had with my first were beginning to haunt me, but the connection was still not made. He was placed into a preschool because he had “developmental disabilities” but that was all that it was called. I was not connecting the proverbial “dots”; I was not realizing how the medical conditions and the reasons for the problems with babysitters and preschool could be connected. I recall that time very well. The teachers had a look on their face, a look that I had seen only on the faces of doctors before that day. It was the look on the doctor’s face as he or she told the family or loved one that the patient did not make it. A polite way of saying the person was dead. I never understood why they did not just come out and say the word “dead.” I did not understand what the teachers were saying either. I heard the words: “lacks appropriate social skills, inappropriate communication skills, and major deficits in fine and gross motor skills.” I was so upset and I just assumed that they wanted my child on drugs, so I stated the fact and left, upset. Anger was the only emotion that I knew when I felt that way. Now I see how another window was opened, a window to growth and understanding if I had only understood what they were trying to tell me. If they had only known how to manage an adult and child on a spectrum called Autism.

Cody, my third child, was different in ways I did not comprehend. I knew it was hard to take care of him and I knew I could not explain it. Larger day care settings were too much for him and smaller homes or private day care were better for him—but harder on the person providing the care. It is easier now to understand how and why things were harder with my son. Autism explains it. It is that simple for me now, but not as simple for others to understand yet. I hope to be able to help others understand the complexities of autism.

Some of the challenges we had with Cody started early, when he was younger than three years old, and some were present from the beginning. His inability to sleep was noticeable, but we thought it to be just the way he was. I now know he has sleep apnea, after having a sleep study done. The physical aspects of his nasal passageway and airway are not the same size as most people’s his age. Looking at him from the front, he looks to have an overbite; looking at him from the side view, his lower chin seems to be set in much farther. Does this mean there are physical abnormalities causing him difficulty with breathing? This is something we are just now investigating.

He walked with a bounce and on the tips of his toes. Later he was recognized as having decreased responses, sometimes absent reflexes in the lower extremities. The reasons were not addressed by the medical professionals. His odd walk led to him having difficulty running. He slowed down his activity as he got older and before long had no desire to play outside with other kids. He had a runny nose all the time, later to be diagnosed as “environmental allergies,” with treatments that barely made a difference. Once he was diagnosed with asthma and after being medicated for months, we found out it was not asthma just an asthmatic-like episode. Together these contributed to increased weight and decreased activity.

I was told by the preschool that he had gross- and fine-motor coordination deficiency, and that they would work on these issues. How it impacted his life out of school I was unaware of. How or why to treat him out of school was beyond my comprehension. The fact that he could not ride a bike was covered up by the fact that he did not want to even try.

Playing in the pool was the only exercise he could or would participate in. I signed him up for baseball one year, but he never understood the concept. Also, he was afraid the ball was going to hit him when it was thrown near him, causing him to duck or move aside instead of hitting it with the bat or try to catch it when in the field. While many children at the age of five may not be that interested in learning to play baseball, and while in the field may not be able to stay still or pay attention to the game, Cody’s inability went much farther than average, and many times we could only laugh. He would be in his own world, bouncing around in his space, oblivious to anyone watching. Once the ball rolled into his space and he spotted it, he picked it up and proudly lifted his treasure to the sky, never throwing it to anyone because he was so happy he found it and had it he did not want to let it go. At the time it was just funny, but now I see it as another lost opportunity to learn.

He played with small cars. He would line them all up in a row. Never did I wonder why. He preferred to climb into tight spaces, like the kitchen cabinets, and stay in there. He had problems with going to sleep and had what some would call night terrors.

Toilet training was a personal issue for me, I hated diapers, but trying to push him seemed to make it worse. When he was around four, delayed in my opinion, but maybe not a serious delay according to the professionals, I realized that the best way to toilet-train him was to bring the toilet into the only room he would sit still in, the living room. I recall people; other parents especially, telling me that it was an inappropriate way to teach, because the toilet was in the bathroom. That training him to use the toilet in a room it was not in would never work. Somehow their logic made sense to them, and mine made sense to us. It worked. The only way he would sit still long enough, to relax enough, to be able to let it out, was in front of the television with his favorite movie on.

He had a hard time at school, and though the teachers would tell me the issues, how he could not play the way other children his age do, they never told me how it was different. I could not see it either because I had nothing to compare it to. When they pointed out that he would “refer to himself in third person,” I did not understand what that meant. When they explained he refers to himself by name, instead of “me” or “I,” I still did not understand why it was a problem until I understood the diagnosis of Autism.

I have heard stories that some children regress, or lose skills that they had before the diagnosis. I have heard that these regressions are what lead many parents to find out what is wrong and that is when they get the diagnosis. The fact that I did not notice the regressions that were present (he stopped speaking for a few months) until after they returned, may have been part of the reason he (and his younger brother) were not diagnosed earlier. He was in speech, and therapy at school (both were in early treatment for aspects of autism without the name put on them). When he came home he was not in any treatment; he was allowed to be a kid. Unlike many parents, I encouraged their needs more than my own. They were kids that needed to play and explore their world; our home was their world. I could not keep it show-room presentable and I came to terms with that for them. The house was always kid friendly and kid proof with the most dangerous of things not even in the house.