Home > In Their Own Words > In Their Own Words – Georgia’s Story

In Their Own Words – Georgia’s Story

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 editors@autismspeaks.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.

  1. Loramath
    September 17, 2010 at 4:01 am

    I enjoyed reading your story very much, thanks for sharing it.

  2. jenny mateo
    September 17, 2010 at 11:31 am

    Thenk you for your uplifting story, it’s nice to hear positive, strugglling parents making it agaist all odds.

  3. Jessy
    September 17, 2010 at 1:05 pm

    I need some help, my son Luke has autism we are convinced as well as the people who spend everyday with him however when the county worker came to diagnose him she said he was mentally retarded not autistic because I quote “he is too friendly” Luke has fits if his routine is not followed, he still has a vocabulary of about 35 words, I am sure he says more than that but they are illegiable. He hits himself and bites himself when he is frustrated. I dont know what to do! He is in special classes but I dont think he is getting everything he needs because I do not believe he has the correct diagnosis. If you have any resources that might help please email me at jessypapworth@yahoo.com. Thank you so much ~Jessy

    • Lorel Brown
      September 17, 2010 at 4:31 pm

      Hi Jessy,

      I’m not sure who the county worker is that you refer to here, but you’ll need to take your son to a medical doctor to get an autism diagnosis. Start with your pediatrician and ask that they refer you to a specialist who knows about autism — a behavioral pediatrician, neurologist, etc. My daughter was not diagnosed until age 8, but she has still never been given an IQ test, because the school officials who work with her fear she too would be labeled “retarded” because she doesn’t understand the testing procedure or loses interest in the test and answers anything she thinks of. Keep searching until you find someone you trust to help you get the right diagnosis, whatever that is, and then make sure you are ALWAYS your son’s advocate. Autism or not, if you feel he needs more at school, get in there and fight for what he needs. Good luck!

    • VICKY
      September 18, 2010 at 4:43 pm

      My Grandson is also very friendly but has Aspergers. He was labeled mentally retarded at school also until he was diagnosed with Aspergers. He had many autistic tendencies when he was little but with much therapy he is doing really well at ten years old. Don’t give up until you feel comfortable with the diagnosis. You know the most about your child. Vicky

  4. Carol Phillips
    September 17, 2010 at 8:26 pm

    Every time I read a story such as Georgia’s I’m reminded of my 16 year old son, whose story is so similiar. So many things are the same, sitting in the W-shape when he was learning to sit up, and on until he was much older, and staying on one subject and being so smart about those few subjects that interest him. It is funny that even though I know his diagnosis, that it surprises me, how similiar it is, yet took so much testing and time to diagnose!!! As if it were such a foreign disorder, or perhaps just that doctors don’t seem to want to believe, that this child has that disorder!!! It just amazes me to read other stories and say to myself, that really is my son, how come it was so hard to see. By the way, he’s in the 10th grade now and gets to go to a technology class that he loves! His diagnosis is actually PDD-nos because so many of the “things” he does can be picked from each of the lists of the autistic spectrum. Just for an example, I didn’t realize that his “gait” was not “normal” until, my sister pointed out that he “walked funny”. It had not really occurred to me that, lining up his toys was not real play, until I was told, because, I thought he was playing, after all, he seemed to be entertained and happy. He was very happy, just being left alone, I didn’t know any better. But, he does make friend now, keeping them is another story! He loves playing his guitar–and I have certainly encouraged every opportunity to play music! Some things that do make him happy, why not let him do it? Some things have been very, very hard to get done for him or to get people to accept, or to understand, but it has been very, very worth it!! Thank you for your story–this helps me.

  5. Cynthia Taulbee
    September 18, 2010 at 10:49 am

    I don’t know were you live but in KY we have regional child development centers that will test children and get you to experts such as the Weiskopf Center in Louisville which specializes in Autism. Trust your instincts. The testing they do involves several people over number of appointments. No one can fairly judge your child on one short visit. You know your child better than anyone else. If he is 3 or older check with your local school system. They are required to test and serve all children. For a younger child, try the First steps program.

  6. Kamesh
    September 18, 2010 at 11:19 am

    To the lady who wrote this wonderful article……..

    I sure appreciate your sharing of your innermost feelings as I myself have a son aged 12 who had been diagnosed with mild ASD. It sure beats me when i think of writing about my feelings but reading about your commitment has made me decide to do something more, not only for my son but for others facing the same situation.

    Thanks and all the best for a brighter future for you and your family.

    Kamesh

  7. morgan
    September 19, 2010 at 4:32 pm

    I enjoyed reading your blog. My daughter is seven and has rcently been diagnosed with Asperger’s Syndrome. Much of the characteristics you talk of in your daughter, I find in mine. I often wonder what she will be like when she is an adult. I worry so much about her future. But it is nice to hear stories of children with an ASD that grow up and are able to follow their dreams. She wants to do something with horses, from the time she could speak, my daughter has had an interest in horses. I am also curious to know if anyone else’s child with an ASD has epilepsy? She has been diagnosed with complex partial siezures.

    • Carol Phillips
      September 19, 2010 at 10:54 pm

      Yes, when my son was six years old he had his first seizure, a Christmas I’ll never forget. It was Christmas Day 1999 and his dad went to check on why he hadn’t gotten up yet, called me in there, and when I entered the room I saw him, shaking on one side and slobbering out one side of his mouth; i immediately turned him to his side and slightly held him till he quit seizing. From that point, when the doctor could see him and get an EEG ordered, he was etc, he was diagnosed with complex partial epilepsy, and the wonderful thing is he presently has had no seizures for five years or so, he takes seizure medicine that helps blanket the ADD meds he takes, but there were only a minimual ammount of “spikes” last time he had an EEG. Things are OK, for us at the time!!!

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