This “In Their Own Words” is by Paula, a mother in Brazil. She requested her daughter’s approval before writing this story. They agreed to call her Georgia to pay homage to her favorite movie director, George Lucas. This story was translated from Portuguese.
When my daughter was first placed in my arms I noticed a unique and exotic beauty, a different kind of beauty. “Different” has been a key word in my life for nearly 22 years. There was something mysterious about her development, which was not only intriguing, but also concerning. I shared my fears with my husband, who did not notice anything different about her. To a certain extent he was right. Georgia was delivered through natural birth at 45 weeks and 5 days. By 3 months of age Georgia had a firm head, and by 7 months she could sit without any support. It wasn’t until years later that I found out that sitting in a “W” position was not appropriate.
Back then I did not know her diagnosis; I was living in a seesaw. At times I would feel restless and fearful, at others blissful. I was happy when Georgia crawled at 11 months, and when she began to walk at 14 months. Little did I know that her walking rhythm and speed were not appropriate.
My fears and anxiety were increased by our aloof relationship. I breast-fed her until she was 7 months, how could she refuse my touch? Why would she reject my arms yet embrace a stranger’s arms?
I was intrigued by her fine motor skills. She did not use her thumb to grab a toy. When her attempt to get a toy had failed, she would then use her thumb and pointer, her pincer grasp, to get a toy.
I took Georgia to regular appointments with her pediatrician who claimed that she was fine, and reminded me that not all children have the same developmental pace.
I was visiting my mother with Georgia, then 8 months old, when the power went out. We placed some candles around the house; I put Georgia on the table and tried to call her attention to a candle’s light. I noticed that her eyes were pointing in different directions. One eye looked straight ahead, while the other eye turned inward, at this moment I yelled for my mother: “Mom, I know what Georgia’s problem is! She is blind! That explains everything.” We desperately called a friend of my mother’s, who was an ophthalmologist, and asked him if he could examine Georgia right at that moment.
I was much calmer when we left the doctor’s office. He told me that Georgia could see from both eyes, but she had divergent strabismus. We visited a few other ophthalmologists who agreed on the diagnosis, but not on the treatment. Some recommended surgery, while others recommended orthotic therapy to strengthen her eye muscles. We opted for orthotic therapy, which worked on improving the eye’s stability and balance, and on enhancing the integrity of overall eye muscles alignment. A few hours a day, seven days a week Georgia wore an eye patch on the eye that was considered to be working well, to force the malfunctioning eye to work more and, therefore, improve its sight.
By the time Georgia was a toddler she developed myopia and began to wear eye glasses. After a few years I decided to have her reevaluated and the new doctor suggested that we change the lenses sphere which practically cured her of the myopia. Since then she made great progress on making eye contact. However, at times when she felt tired she would avoid eye contact. There was no explanation for her inability to sustain eye contact.
At around this time I took Georgia and my elder son to a birthday party. At the party a man who was a retired pediatrician approached me and said: “Your daughter should see a orthopedist.” When I asked him why, he replied: “Because when an orthopedist sees your daughter, he will tell you that she actually needs a neurologist.” When I asked him what was Georgia’s problem he remained silent. At that moment I felt awful, like the world had just fallen on me. We left the party immediately. I felt vulnerable, emotional. I felt sad, enraged, and regret. I thought: “what if he is right?” Deep down I knew something was different.
The next day I took Georgia to see her pediatrician. I told him what had happened the night before, and shared my fears and concerns regarding her development. I spoke about her apathy towards me, could she be deaf? I asked him to help me find a diagnosis and to referrer me to a competent neurologist. He gave me a few referrals, and told me that Georgia was not deaf.
I took Georgia to a myriad of orthopedists that had divergent conclusions on her diagnosis and treatment. Some suggested that she should undergo surgery and remove one of her foot’s ligaments. They claimed that by doing that her posture would be improved and she would be able to have more control over her body. Some doctors mentioned low muscle tone, which I thought was a consequence rather than a cause. Other doctors recommended physical therapy to strengthen her leg and eye muscles. I opted for physical therapy because it is less intrusive and aggressive.
I finally managed to get an appointment with a neurologist, who examined her and concluded that she had Borderline Disorder. He explained to me that Georgia’s nervous system was developing very slowly, and that was the reason for her developmental delays. He claimed that she needed more stimulation and asked me to do so, in other to help speed up her development. The neurologist requested several exams, which indicated that all was well. Then he requested a CAT scan of her brain. The CAT scan showed a discrete ectasia of lateral ventricle. When my husband asked the doctor for further clarification he said that he could not say anything else without making additional exams. He told us that it might be nothing or it might lead to hydrocephalus, and the only way to know would be by performing regular CAT scans. My world was wrecked, once again. When we left the exam facility we went back to the office of the neurologist who had requested the exams, who said not to worry, because Georgia had a very little likelihood of developing hydrocephalus. He explained that she was too old to develop such a condition. Nonetheless, he requested a CAT scan to be done twice a year, and measured her head every three months.
This was our annual routine until she turned 7 years old, and because the results remained steady, from there on, she was only required to have a CAT scan every three years. But I still wondered: Could this really be the cause of her developmental delays? What about her fine motor skills? The doctors always told me that nothing was related.
I decided to resign from my job as a lawyer. I bought an apartment in Sao Paulo, where I lived with the children, and my husband stayed in our suburban home. We saw him only twice a week. I thought that by living in a big city I would have better access to top-notch doctors and treatments.
When Georgia was 11 months old, she received physical, occupational, speech, and hydrotherapy therapies three times a week. I sent her to a nursery school. I wanted her to engage with other children.
When her school friends could not come over for the weekend, I would invite her friends from acting school. I believe the acting classes played a major role on improving her social skills. I used any excuse to have a party, any holiday or religious celebrations. Children always came wearing a costume related to the occasion. I was always involved in her play. I wanted to make sure that she was not left out, nor would she withdraw from her friends.
Georgia learned how to read and write when she almost 6 years old. She always enjoyed reading and has an excellent memory. She displayed great interest in history and geography. She was slower taking school exams and doing homework, but she never showed any learning disability.
Before I forget, Georgia began speaking when she was 2 years old. She never learned how to ride a bike or dress up her dolls. However, she was very knowledgeable on the subjects she liked; sometimes she showed even greater knowledge than the adults around her. Georgia easily learned how to swim, but she struggled to learn how ski.
Georgia is a sweet and caring young woman. She enjoys social situations. But was not always like that. During her adolescence she experienced stages of irritability and anger. She refused to go out with her girlfriends, and eventually they faded away. During this time she was unable to make new friends, or keep the friends she already had. Her girlfriends began to flirt with boys and go out at night. Georgia, however, never showed interest for boys. She had a few crushes that never evolved into relationships. From time to time I noticed, and encouraged, great progress in her social life. Many times Georgia isolated herself from family and friends. When we were going to see a movie or a play she constantly asked to stay home, but I never allowed that.
Georgia’s answer to everything was “no.” So I accommodated our life style to keep her around us. We only had one television in the house, so that we could learn how to share. Share not only the television but also life. If she wanted to read in her bedroom, I would ask her to read in the living room, so she would stay with us. I always kept her busy so that she did not spend much time without an activity. The only way she would join the family activities was by obligation, but I did that because I knew that at the end, despite the stress to get her in the car, she always had a good time.
Georgia did not have a diagnosis for many years. In fact, it was only a few years ago that I learned about her diagnosis. Georgia has Asperger syndrome. Only four years ago I heard that autism was a spectrum disorder.
For much of the past 20 years, my main focus has been my daughter. Sometimes I felt guilty for not spending as much time with my elder son, who was only a year and an half older. I felt guilty for not demonstrating how much I loved and cared about him. I was very lucky, because he never complained; he noticed and understood that his sister needed the extra care and attention. Today he is a 24-year-old man and he is an amazing human being. I also have two younger neurotypical sons. I must confess that I was quite apprehensive during the last two pregnancies, because I suspected Georgia’s problem was hereditary since I have an uncle who is “different.” But I am so grateful that today at 15 and 18 years old, they are amazing brothers and have nothing but love, acceptance and respect for her.
I never had a doubt about having a big family. All of my children are unique; they live in their own universe. As a mother I try my best to treat them equally. I always give the same advice to my children: Try your best to achieve all that you want in life, but never hurt yourself or others while doing so.
Today Georgia is 22 years old. She is attending college with a major in cinema. Her interests have not changed, but evolved. She likes history, but not just any history, British history. About a year ago we talked to Georgia about her diagnosis. I hesitated to talk to her about it, because I was afraid she would lose her desire to live and chase her dreams. I was afraid she would lose her motivation to overcome the obstacles and even her own self. After we talked to her about it, she decided to stop her treatment with her psychiatrist. After 14 years of weekly sessions she decided she was ready to walk on her own. When I asked why, she replied: “I always wanted to know what the problem was. Now that I know what the problem is, there is no need to continue the therapy sessions.” Her psychiatrist helped not only Georgia, but also the whole family so although I was hesitant, I respected her decision.
Besides attending college, Georgia still sees a team of therapists who support her development. She receives therapies twice a week. She also has a tutor who helps her with her college assignments. Georgia does Pilates and aerobic exercises twice a week. She receives hippotherapy, and takes English classes. She has been to a myriad of classes, such as piano, violin, guitar, ballet, and pottery. She recently got her first job! She works in a pet store and has had two cats and many dogs.
Georgia gets to decide who needs to know that she is on the spectrum, and gradually she is learning how to deal with it. I think I can say today that among all mistakes and good decisions, telling her the truth about her diagnosis was a great decision. Although she knows there is no cure for her disorder, she continues to overcome her obstacles. Georgia still has lot to accomplish and improve, but she has amazing passion and I know she will accomplish her long-term objective to be as independent as possible.
As her mother, I have learned to handle and control my anguish. I try not to worry about the simple daily problems. Among the many things I learned from Georgia, I learned that some problems have no immediate solution, so all we can do is manage these problems in the best possible way.
Georgia has taught me to be patient, objective, happy and empathetic. During my journey I have met children, parents, and even entire families who struggled with the same issues, the same fears, anxiety, anguish, and even worse problems than I had. Most of them did not have the same financial and educational resources that Georgia had.
Like the adage says, “no pain, no gain.” Today I am one of the co-founders of a charitable organization for autism. The experiences I had made me realize that we must work for a common good. Each one of us can do something to promote change. One step at a time and love will keep us together.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.