September 17, 2010 by Post Team
Cat Scan, This “In his own words” Paula is a co-founder of a charity for autism. She requested approval of his daughter before writing this story. We both agreed to call her Georgia to pay tribute to his favorite film director George Lucas. This article was translated from Portuguese.
When my daughter first put 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 almost 22 years. There was something mysterious in its development, which was not only interesting but also affecting. I shared my fears with my husband, who noticed something different about her. To some extent he was right. Georgia was delivered by natural birth at 45 weeks and 5 days. At 3 months of age Georgia had a strong head and 7 months he could sit without support. It was not until years later that I learned that sitting in a “W” position was not appropriate.
At that time I did not know his diagnosis, I was living in a seesaw. Sometimes I feel anxious and fearful, others happy. I was happy when Georgia crawled at 11 months, and when she started walking at 14 months. I did not know their normal walking pace and speed were not appropriate.
My fears and anxiety in our relationship grew distant. I breast-fed her until he was 7 months old, how would reject my touch? Why would reject my arms still embrace the arms of a stranger?
I was intrigued by their fine motor skills. She did not use his thumb to get a toy. When his attempt failed to get a toy, which then would use the thumb and pointer, the claw grip, for a toy.
Georgia took regular appointments with his pediatrician who said he was fine, and reminded me that not all children have the same rhythm of development.
I was visiting my mother in Georgia, then 8 months old, when it was light. We put candles around the house, I put Georgia on the table and tried to draw your attention to the light of a candle. I noticed that his eyes were pointing in different directions. One eye looks straight ahead, while the other eye inward, this time I yelled at my mother, “Mom, I know what the problem is Georgia! She is blind! That explains everything.” We desperately called a friend of my mother, who was an ophthalmologist, and asked if he would consider the right of Georgia at that time.
I was much calmer when we left the doctor’s office. He said that Georgia could see in both eyes, but had divergent strabismus. Ophthalmologists visited a few others agreed on the diagnosis but not treatment. Some recommend surgery while others recommend orthotic therapy to strengthen the muscles of the eye. We opted for orthotic therapy, which worked on improving the stability of the eye and balance, and improving the integrity of the overall alignment eye muscles. A couple of hours a day, seven days a week Georgia had an eye patch in the eye that is considered to work well, to force the eye works correctly to work harder and therefore improve your eyesight.
By the time Georgia was a child who developed myopia and started wearing glasses. After a few years I decided to have their reassessment and the new doctor suggested that the change of the field lenses that virtually cured of myopia. Since then she made a great progress in eye contact. However, at a time when she was tired she would avoid eye contact. There was no explanation for its inability to maintain eye contact.
In all this time I took Georgia and my oldest son to a birthday party. On the feast of a man who was a retired doctor approached me and said, “Your daughter should see an orthopedist.” When I asked why, he replied: “Because when an orthopedist sees his daughter, he will tell you that she really needs a neurologist.” When I asked what was the problem of Georgia was silent. At that moment I felt awful, like the world had just fallen on me. We left the party immediately. I felt vulnerable and emotional. I felt sad, angry, and repentance. I thought, “if he’s right?” Deep down I knew something was different.
The next day I took Georgia to see his pediatrician. I told him what had happened the night before, and to share my fears and concerns regarding their development. He talked about his apathy towards me, I could be deaf? I asked him to help find a diagnosis and for referring me to a competent neurologist. I gave a few references, and said that Georgia was not deaf.
Georgia led me to a large number of orthopaedists who had different conclusions about the diagnosis and treatment. Some suggested they should undergo surgery and remove one of the ligaments in his foot. They claimed that by making his position would be improved and would be able to have more control over their body. Some physicians mentioned low muscle tone, which I thought was a consequence rather than a cause. Other doctors recommend physical therapy to strengthen the leg and eye muscles. I opted for physical therapy because it is less intrusive and aggressive.
Finally got an appointment with a neurologist who examined her and concluded that there was borderline. He explained that the nervous system of Georgia is developing very slowly, and that was the reason for the delay in development. He said that he needs more stimulation and asked me to do so, in others to help accelerate their development. The neurologist asked several tests, indicating that all was well. Then he requested a CT scan of his brain. The CAT scan showed a slight ectasia of the lateral ventricle. When my husband asked the doctor to clarify that he said he could not say more without further testing. He told us it could be nothing or it may lead to hydrocephalus, and the only way to know would be by conducting regular CAT scans. My world was plunged once again. When we left the test facility, we went to the office of the neurologist who had requested the tests, he said not to worry, because Georgia had a very small chance of developing hydrocephalus. She explained that she was too old to develop this condition. However, requested a CT scan that takes place twice a year, and is measured by the head every three months.
This was our annual routine until he was 7 years old, and because the results remained stable, from there, she was only required to have a CAT scan every three years. But I still wondered: Could this be the cause of developmental delay? What about fine motor skills? The doctors always told me there was nothing related.
I decided to quit my job as a lawyer. I bought an apartment in Sao Paulo, where he lived with the children and my husband stayed at our house in the suburbs. We saw him only twice a week. I just live in a big city I would have better access to top quality physicians and treatments.
When Georgia was 11 months old, received physical, occupational, speech, hydrotherapy and therapy three times a week. I sent her to a nursery school. I wanted to collaborate with other children.
When her school friends could not come the weekend, I would like to invite your friends from the acting school. I think acting classes played an important role in improving their social skills. I used any excuse for a party, any holidays or religious celebrations. The children always came dressed in a suit related to the occasion. I have always participated in the game. Wanted to make sure he does not remain or to withdraw from his friends.
Georgia, learned to read and write when almost 6 years old. She always liked to read and has an excellent memory. She shows great interest in history and geography. She was slower to take the school exams and homework, but never showed any learning problem.
Before I forget, Georgia began to speak when she was 2. She never learned to ride a bike or dress their dolls. However, she was very knowledgeable about the subjects he liked, sometimes showed very little knowledge is even greater than the adults around them. Georgia easy to learn to swim, but she struggled to learn skiing.
Georgia is a sweet and loving girl. She enjoys social situations. It was not always so. During his teens experienced phases of irritability and anger. She refused to go out with her friends, and finally vanished. During this time she was unable to make new friends or keeping friends already had. Her friends began to flirt with boys and nightlife. Georgia, however, never showed interest in children. There were a few crushes that never became relationships. Once in a while I realized, and encourages progress, great in his social life. Georgia is often isolated from family and friends. When we went to a movie or a play, she always asked to stay at home, but that never stopped.
Georgia’s response to everything was “no.” So to accommodate our lifestyle to keep around us. There was only one television in the house, so we could learn to share. Share not only television but also life. If she wanted to read in her bedroom, I would ask that you read in the living room, so she would stay with us. I always kept busy so they do not spend much time with no activity. The only way to unite the activities of the family was out of obligation, but I did because I knew that ultimately, despite the tension to carry in the car, she always had a good time.
Georgia did not have a diagnosis of many years. In fact, it was a few years ago I learned about his diagnosis. Georgia has Asperger syndrome. Just four years ago I learned that autism was a spectrum disorder.
For much of the past 20 years, my focus has been my daughter. Sometimes I felt guilty for not spending much time with my oldest son, who had only a year and a half. I felt guilty for not showing how much he loved me and cared about him. I was very lucky because he never complained, saw and knew that his sister needed the care and attention. Today is a 24 year old and an amazing human being. I have two minor children neurotypical. I must confess that I was very apprehensive in the last two pregnancies, because Georgia was suspected hereditary problem because I have an uncle who is “different.” But I am very grateful that today at 15 and 18 years of age, who are brothers and have nothing incredible, but love, acceptance and respect for her.
I’ve never had a doubt about having a big family. All my children are unique, but they live in their own universe. As a parent you can to treat me equally. I always give the same advice to my children: Do your best to get everything they want in life, but does not harm themselves or others while doing so.
Today Georgia is 22 years old. She attends college with a major in film. Their interests have not changed, but evolved. She likes history, but not only the history of British history. About a year ago we talked to Georgia about their diagnosis. I hesitated to talk to her about it, because I was afraid of losing her will to live and pursue their dreams. I was afraid of losing the motivation to overcome obstacles and even his own being. After talking to her about it, she decided to stop treatment with your psychiatrist. After 14 years of weekly sessions, he decided he was ready to walk on their own. When I asked why, she replied: “I always wanted to know what the problem was. Now I know what the problem is no need to continue the therapy sessions.” He helped her psychiatrist, not only Georgia, but also the whole family so although I hesitated, I respected his decision.
In addition to attending college, Georgia continues to see a team of therapists to support their development. She receives therapy twice a week. It also has a tutor who helps with homework in college. Georgia does Pilates and aerobics twice a week. She received hippotherapy, and take English classes. She has been a wide variety of classes such as piano, violin, guitar, ballet, and ceramics. Recently got his first job! She works at a pet store and had two cats and many dogs.
Georgia may decide you need to know that she is in the spectrum, and is slowly learning how to deal with it. I think I can say today that, among all the mistakes and successes, telling the truth about his diagnosis was a big decision. Although she knows there is no cure for her disease, she continues to overcome its obstacles. Georgia still has much to do and improve, but has incredible passion and I know she will deliver on its long-term goal to be as independent as possible.
Like her mother, I learned to manage and control my anxiety. I try not to worry about simple everyday problems. Among the many things I learned from Georgia, I learned that some problems have no immediate solution, so all we can do is handle these problems in the best possible way.
Georgia has taught me to be patient, objective, lively and sympathetic. During my trip I met children, parents, and even entire families who have struggled with the same problems, the same fears, anxiety, distress and even worse problems than I had. Most of them do not have the same financial and educational resources that Georgia had.
As the adage says, “no pain, no gain.” Today I am one of the co-founders of a charity for autism. The experiences I had made me realize that we must work for the common good. Each of us can do something to promote change. One step at a time and love will keep us together.
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