Mason was born on November 8, 1998 in a Naval Hospital on Okinawa, Japan. He was carried until 42 weeks and four days. My body would not go into labor, even after Pitocin and a few other techniques tried by the doctors. After spending the last week of pregnancy in the hospital, we finally opted for a C-section. Mason came out with a head full of hair, extremely alert, and already raising his head up to look around. My doctor gave him APGAR scores of 9 and 10. The nurses told me, my doctor "NEVER gives scores that high." He weighed in at 8 pounds and 13 ounces and was perfectly healthy.
After a typical hospital stay, we headed home. Mason behaved as any baby. He cried when he was hungry, sleepy, or needed to be changed. He was very happy. He began sleeping through the night very early. By six weeks he was sleeping from around 6:30 pm until 4:30am...would eat, then go back to sleep for another hour. He started taking three naps a day for about 45 minutes each. Quickly, over time he switched to two naps for 90 mins, then by one year old he was taking one nap in the middle of the day for 2 ½ hours. I can remember these details because he was like clockwork!
I'd read all the parenting books about “put your baby on a schedule” and others telling me “feed your baby when he's hungry, let him sleep when he's sleepy.” I didnt have to make a choice about my parenting style...Mason made it for me. I could tell you exactly what time of day it was by the activity Mason was doing.
I lived on a military base and there was a group of about eight moms and we all had babies within months of each other and we were all neighbors. We met daily for “play group.” Around six months old, I started to notice Mason doing things that were different from the other children. Being a first-time mom, I wasn't aware he wasn't suppose to be doing the things he was doing. If you remember the “shape ball” you can order from Tupperware? I have seen that toy in so many homes and it typically gets filled with the shapes then rolled around and doesnt get much use. Mason, who began sitting up at 5 ½ months, mastered this toy by six months old. He wouldn't just bang the shapes onto the ball until one accidentally fell in. He would pick up a shape, carefully inspect the ball, put the shape into the correct hole, and move on to the next shape. Within two weeks, he could complete the entire ball in less than one minute.
He LOVED the weather segments that came on TV. I'm the type of person who likes a little bit of background noise so I usually have the TV or radio on softly no matter what I'm doing. I noticed that every time the theme music would come up before a weather update, Mason began crawling as fast as he could into the living room and just stared at the TV...until the update was over. Then he would crawl away and continue playing. As early as six months, he was perfectly content sitting on the floor with some toys and playing alone.
I noticed Mason was very particular about what touched his skin. He didn't like to touch grass. He didn't like anything that was scratchy. He really didn't like to wear clothes. He didn't cry when getting dressed, but it was obvious he preferred to be without clothes touching him.
He was very loving and affectionate and loved hugs. At this time, I still didn't think anything was abnormal about Mason...but later when I was faced with the fact that there was something going on, looking back to this time made it clear to me that Autism was not the problem. While he loved to sit and play alone, in my uneducated opinion, he was entirely too comfortable with being held and touched to have Autism. (Keep in mind, I was not informed about Autism at all, when I made this determination.) Autism was pretty new and just starting to be talked about regularly and the most information I had was that Autistic children didn't like to be touched.
Over the next year, from age one to two, we continued meeting almost daily with our play group. Everyone noticed differences in Mason. The other children slowly grew to play together or at least develop parallel play, playing with the same toys while next to each other, but not necessarily playing together. Mason was always away from the group. He would find the toy cars and line them up from biggest to smallest. He would gather all the balls and sort them by color. As an eager first-time mom, I was already writing numbers and letters for him with side walk chalk. He wouldn't try to say them, but I would show the moms at play group that I could write numbers all the way into the 30's and ask Mason, “Where is 24?” and he would point to it. “Where is 15?” and he would point to it. I wasn't bragging, I just thought It was neat. I'd only written the numbers and said their names 8 or 10 times for him.
Around this time, I realized Mason was also a very picky eater. He loved to eat! He always ate enough, but his palate was very limited. Chicken, peanut butter, waffles, applesauce, carrots, plain noodles.
I didn't think anything was so out of the ordinary that I had cause for concern. Most of the deep thinking about these few examples of happenings came later when I was forced to look back and examine everything. When I came to the conclusion that something wasn't right, I had no choice but re-play every part of the last few years. Were the things I remembered important? Were they simply coincidence?
It was around two years old that I began to notice the other kids started using words when they wanted something. Mason never did. He didn't throw tantrums, if he wanted a drink, he walked over to his cup and got a drink. He didn't seek my permission and he didn't need me to do it for him. As the other children entered into the “terrible twos” I felt like the luckiest mom on earth. I was probably a little boastful at this time, thinking I must be the best mom on earth because my son never feels the need to throw a fit. He's perfectly happy all the time. <insert laugh here>
As the months passed, I became more worried about Mason's lack of speech. I noticed additional things he was doing above and beyond his age. By three years old, he was completing puzzles for 10-12 year olds. He loved to be creative. He was making 3-D projects from construction paper and tape with perfect detail. He had a toy guitar that used batteries and made music. He reconstructed it with nothing but tape and paper...down to the batteries that he taped onto the back and the small piece of paper he taped over it to represent the battery cover. It had a strap that you could put around your neck and paper “strings” that you could play. He made usable piggy banks, bicycles with wheels that turned, etc. All from paper and tape.
He still wasn't talking and he still was not potty trained. I made a choice at this time not to involve a doctor. I KNEW in my heart, they would try to tell me he was Autistic and he was not. I was so scared and I refused to have my son labeled and put into some category where he was prejudged as having a “disability.” This was something else. This was something very different. If I let them tell me he was Autistic, that's the way he would be treated and it would be wrong. I cried myself to sleep night after night after night. I felt completely alone. I was on a mission to protect my child. I knew that he was doing too many exciting things, beyond his years, for there to be something “wrong.”
My mother called me and told me she found a book called, “The Einstein Syndrome: Bright Children Who Talk Late” written by Thomas Sowell. Mr. Sowell's own son had Einstein Syndrome. I read the book and just broke down. This was my child. Every bit of the book could have been written about Mason. I immediately contacted Dr. Stephan Camarata and flew back to the United States to take him to Vanderbilt University. Dr. Camarata was the first person I felt comfortable talking to about Mason. He also had a son like Mason.
What is Einstein Syndrome? Read more HERE.
When Mason had his appointment he was just turning four years old. By this age, he was able to take things apart and put them back together perfectly, his art was more and more creative and detailed, he still had no speech, and I'd begun to notice that he always looked confused when I spoke to him.
Dr. Camarata did a series of tests with him that lasted about four hours. At the end, he was diagnosed with Einstein Syndrome. What? What does that mean? The first thing I found when I looked it up said, “Down Syndrome with a Positive Attitude.” WHAT!? I was no doctor, but I knew this wasnt true. That's not it. Einstein Syndrome is a term Thomas Sowell used to describe exceptionally bright people who experience a delay in development of speech. The name is derived from physicist Albert Einstein, the author of the theory of relativity and the father of modern physics, whose speech was delayed till age five.
I was also told at this appointment that Mason scored only 3% in verbal comprehension. Meaning he only understood 3% of what I was saying. This explained the confused looks I got when speaking to him. I was told to help this by continuing to constantly talk to him. Use my hands and be very animated. If I wanted him to bring me the ball, point to the ball, make a ball shape with my hands, beacon him toward me as I spoke the words. I was relieved when this started to work.
It was suggested that I put mason in group speech classes, but that cost money and wasn't covered by insurance. I was a single mom and didn't have the means to do this. I then took on all the responsibility myself. I immersed myself in my son. By this time, I also had another son who is 23 months younger than Mason, with no signs of ES. Being a single mom, I couldnt really work with Mason without having my other son there with us. This turned into our own little preschool. I began talking to my children non-stop. If I did the dishes, I spoke the words explaining what I was doing. “I'm getting the plates from the dishwasher and putting the plates into the cabinet.” I spoke the words explaining the laundry, I spoke the words explaining packing up the car. If I was doing something, I was talking about it.
Finally, at age 4 ½, Mason spoke his first word! Elmo! He was obsessed with Elmo's World. He could be anywhere in the house and hear the song for Elmo's world and come running. He sat in front of the TV for the program, then went back to whatever he was doing. He had an Elmo toy that he took everywhere he went. I remember grabbing him by the shoulders with tears in my eyes and asking him what he said. ELMO. I was well beyond hoping his first word would be “mama.” I was jumping up and down. I was crying and saying, “ELMO.” My youngest son thought it was really fun so he was saying “ELMO” and jumping up and down with me. Mason smiled at all the excitement...then walked away to play. I sat down and just watched the boys play for probably 20 minutes. I sat, with 1000 thoughts racing through my mind. Was this the beginning? Was this it? Would there be more words?
By this age, all the other “milestones” had been surpassed. Mason was writing his name, he was always looking at books (I didn't know if he was reading them or not because he couldn't tell me.) He was always happy and you could see his little mind was always working no matter what he was doing. He hummed a lot. Once he heard a song he liked, he would hum it perfectly. He was finally beginning to be potty trained.
Within 2-3 weeks, Mason was speaking in full sentences. I remembered Dr. Camarata told me speech was believed to be delayed because ES kids were so busy learning everything else, they just seem to have no use for speech. Possibly there's only so much capacity to learn so they fill it with everything else. He assured me it would come. I cant put into words, my relief at this time. Little did I know, this was not the end it was just the beginning of a lot of work.
Mason now talked non-stop. It was like he was finally able to tell us everything he learned over the past five years. I was so excited, I never asked him to stop! He talked from the time he woke up until the time he went to sleep. He would watch Elmo's World, then acted it out when it was over. He also loved Blue's Clues. He drew “handy dandy notebooks” everywhere. He used the clues from the day's episode. He was constantly playing by himself, happily. Always talking. I started to notice that he was actually talking to someone else...even if it wasnt me. I learned that Mason had many, many imaginary friends. We would load them up into the car with us. We would feed them. I was just so happy that he was talking, I didnt care WHO he was talking to!
At age six, it was time for school. I knew, academically, Mason was far beyond the other children in Kindergarten. Still keeping everything mostly a secret, outside of a few close friends and family, I wasn't sure how to approach this with his teacher. I didn't want to go in and sound like I thought I had the smartest kid on earth and them not take me seriously. I didn't want to tell the school the story of Mason's previous years. I tried to explain that Mason was smart and he may need a little extra work to challenge him otherwise he was going to be bored. I was assured they would keep him busy.
After just a couple of days, I began to get phone calls from his teacher. Mason finishes all of his work in five minutes and he's bored. “Yes, this is what I explained to you.” The next day, another phone call asking me to send things in for him to do. I asked if he was misbehaving? “No, he's just bored.” The following week, I get a phone call because Mason reminded teachers in the hallway that there was no talking in the hall. Mason is very black and white. If the rule says “No Talking in the Hallway” he assumes thats the rule for everyone. Mason was always so loving and sweet, the teachers knew he was innocently reminding them. He truly didn't understand why they were breaking the rules.
Mason continued to play with his imaginary world, even at school. He wanted the kids and teachers to call him Thomas (the train.) The teachers didn't try to see that he had a huge imagination, they chose to see this as crazy. Yes, they actually asked me if Mason had mental issues. I was told he wouldn't play with the other kids at recess, he just wanted to sort the toys. He wanted the kids to give him all the balls so he could put them into the ball bin. He hated music class. He would hold his ears and tell everyone to please stop singing. He corrected his teacher in front of the class when she misspoke about a color chart.
At this time, I knew I'd better do something and I was in over my head. I called Dr. Camarata again and took Mason to Nashville. He was tested again. I was told he was actually doing great. His oral comprehension had improved to about 40%. This is when Dr. Camarata told me that school will crush him. He told me if there's any way for me to keep him out of school, then I need to do it. He said, “Don't even send him back tomorrow.”
I let out a deep exhale. What do I do? Im a single mom, I work at a preschool....just so I could keep my children with me at work. I'm an educated Russian Linguist who graduated from one of the most prestigious schools in the country. I had already given up this career to survive on $10 an hour because I couldn't leave my children. I did the only thing I knew to do. I bought a house and opened a daycare at home. It was the only way I could think to pay the bills and teach my boys at home. I add this part to the story, not to bring attention to myself, but to show that there is always a way! It may turn your world upside down, but there is always a way to do what is best.
I was told by Dr. Camarata that Mason was never going to fit in socially until he was around 12 years old. I knew I had the huge job of teaching my child how to interact with others. I had to teach him socialization.
I spent every second, of every minute, of every hour, of every day for the next six years explaining how to live with other people to my son. When we were out, I would point out other children playing together. I would say, “Boys, do you see that little boy and little girl playing? Why do you think he's pushing her on the swing?” Mason never had an answer. “Well, children think its fun to swing, but its sometimes hard to keep the swing moving all by yourself so they figured out they could take turns pushing each other and they would both have fun.”
“Did you see those two boys hit each other? Why do you think they did that?” I would explain several possible things that may have happened. Then I would explain other ways they could have handled this situation. After about two years of this, Mason finally started having his own answers to my questions. Slowly over time, he began to understand the way people interact with each other. It was progress!
Academically, the only problem we had was moving quickly enough. I was trying to follow various homeschool curricula, but I finally came to the conclusion that the only thing slowing Mason down was me. By this time, I was remarried and my husband played a remarkable role in making me comfortable in letting Mason learn at his own pace. My husband didn't fully understand what was going on because I was always very guarded when I talked about Mason. He knew what he observed and I didn't always take the time to explain. The way I was raising the boys went against everything he thought about parenting. I'm so thankful, every single day, that he basically took a step back and trusted me 110% to do what I was doing. I can't imagine the struggle for a man to take on the role of father to two boys and not be able to teach them to be men the way he was taught to be a man. He pushed me to do what I knew was best, even though I was working so hard against the norm it scared me to death. Together, we pushed the boundaries in every aspect of parenting and education to do whatever was needed.
We, as a family, had to teach Mason about things like jokes. He didn't understand what a joke was. He finally accepted jokes were just a part of socializing and would laugh when we laughed. He had no idea why it was funny. Then over time, he started to try to make up his own jokes. He felt a certain need to fit in with us, as a family. He was never bothered by outsiders. He didn't care to be like everyone else. He was always very comfortable in his own skin. This is the biggest reason I kept him out of school. Dr. Camarata and I both agreed that he needed the freedom to be himself. This translated into a very confident young man.
Having a younger brother, Mason had to learn about play fighting. The first time his little brother poked him and laughed Mason was horrified. “Mom, why does Jackson hate me? Why did he try to hurt me?” Another social aspect that you take for granted as parents that I had to teach Mason.
My nephew was a local high school football star, so we never missed a football game. I had to teach Mason about cheering for our team. Why do we do that?
If you asked Mason a direct question, you were going to get a direct answer. This is when I knew I had to figure out how to teach about lying. How could I teach my child to lie? This was a tough one! I started with feelings. Empathy. I had to find an example of something that may hurt Mason's feelings and explain to him that others have the same reaction when their feelings get hurt. I had to give an example of something that made Mason happy and explain that others also feel happy. Then came the art of the little white lie. While some will sit in judgement, I believe there are people who prefer to be lied to and others who do not. I had never thought about this so deeply until now... the complex workings of human relationships. Mason and I talked about every person we knew! I showed him different facial expressions, we spoke about different personalities. What type of person just wants to hear the truth even if you tell them their dress is ugly and what type of person wants you to tell them their dress is pretty regardless of your real opinion?
Every contact you have with a person, everything you see going on around you....I had to explain to Mason. Once he had an explanation, he started to apply it to other situations. Sometimes he was right, sometimes I had to qualify why this instance was different from the last time we saw something similar. Remember, Mason is black and white. If one boy hits another boy for breaking his car...the next time Mason sees two boys hit each other, he begins to look for a toy car. This began the lists of reasons children may hit each other. Those conversations, in turn, became about better ways to handle things instead of hitting.
Mason had to learn what a conversation was. Mason assumed if he was talking and telling you a story, he was having a conversation. This is something we still work on. He has little use for small talk at this time.
Finally, around age 12, Mason really began to get the social aspects of life, just as Dr. Camarata had told me. He will never be “just like everyone else” but if you just met Mason, you likely wouldn't realize the work it took to get him here.
Hopefully, you begin to realize how in depth you must go and how much of your life becomes your child's.
He's now 13. He still loves to fill your head with facts. With the encouragement of my husband, I let Mason become free to learn at his own pace. We adopted more of an unschooling lifestyle. Basically, he learns what he wants, when he wants. He has read through many college level textbooks, he listens to many online lectures from Yale, Stanford, etc. He has a tremendously high level of comprehension. He takes things he learns and combines them with his own imagination to form complex thoughts and questions. He constantly keeps me at the computer looking up things he's interested in. I'm constantly planning places to go. I'm constantly looking for new books for him to read.
While I cannot begin to count the hours and I cannot put into words the amount of work it has taken...Im so very, very proud of the young man Mason has become. He's grown into a very sensitive, polite, caring, smart young man. We still have a lot of work ahead of us, but I can definitely see the fruits of of our labor!