Taylor's First Signs. Something is not right.

Taylor was such a happy baby and he was busy all the time! As soon as he began to crawl, I knew we were in trouble. I envied my friends who could have all these beautiful decorations on their coffee table. How did their baby not destroy those? You would not find any precious knick-knacks on our tables. Nope. Just a lamp and a telephone (remember those?). Anything else would have been in his mouth, on the floor broken or just gone. Nothing was safe below the two foot mark. If we went to visit friends, we had to take everything that was in his reach off their tables. Every. Single. Time. He was into EVERYTHING! We called him a "Busy Baby", we did not realize that this was one of our first signs.

RED FLAG #1
My first indication that something may not be right was when he was eight months old. I went to pick him up at daycare one afternoon and as I came to the door of his classroom, I stood there a moment watching him. Taylor hadn't seen me yet and I wanted to just watch him play. I always loved the look on his face when he first saw me in the door and I was waiting for him to spot me on this afternoon. The picture to the left is the precious face I couldn't wait to see every afternoon, crawling to me as fast as he could when he saw me.

While I was standing there, his teacher walked up to me and asked me if I had ever had Taylor’s hearing checked. I sort of laughed, and explained there was no reason. I knew Taylor could hear just fine and even told her how every night when my husband came in the back door, Taylor would hear the door chime, knew that meant Daddy was home and crawl lightning fast to go see his Daddy.

She didn't say anything so I asked her why she was asking. She explained that whenever she called Taylor’s name, he never responded to her. Then she demonstrated by calling his name loudly and sure enough, Taylor continued to sit there with his back to us, just having a blast playing with the dump truck. What the heck?

So I did what every mom would do, I called Taylor’s name. “Taylor!” Immediately he turned around and saw me. His face lit up and he went into the fastest crawl you've ever seen, working his way towards me. I just looked at the teacher and shrugged like, “well there you go.” He could obviously hear. Maybe he was just busy. Maybe he didn't like her voice?

But what did I just witness?

See, what I didn't realize is that not responding to his name is one of the early signs of autism. Although I thought he was responding to his name when I said it, he was actually responding to the sound of my voice. The reason he did not respond to his teacher was because he did not understand that the word “Taylor” was his name. It would take many more months before he finally understood this concept.

RED FLAG #2
It was not long after this that the biting started and I don’t mean a little nip, this kid could bite!! I think we lasted another month at that daycare before he was kicked out. Thus, the beginning of the nightmare called “Biting and Finding a New Daycare”.

I think we went through three daycares. My husband, myself and the teachers tried everything! Timeout, hot sauce (teachers were allowed to do that then), popping his hand, talking with him, separating him from the other toddlers. Nothing worked and I cannot explain how stressful my days at work were waiting for the phone call from the daycare that I needed to come pick him up again and take him home so I could discipline him because he bit another child. How do you punish a one-year-old, hours after the act when he has been completely removed from the situation?

You don’t. You just pray that he grows out of it. So, we prayed.

We tried to figure out the cause of the biting but the problem was that EVERYTHING seemed to provoke it. If he was frustrated, he bit. If he loved you, he bit. If he was scared, he bit. If he was mad, he bit. If he was really mad, he bit himself! In fact, initially the daycare thought it was Taylor being bit until we realized he was biting himself. He would bite the top of his wrist while he looked at you because he really wanted you to know just how pissed he was!

RED FLAG #3
As Taylor continued on into toddlerhood, my husband and I began to notice that his vocabulary had seemed to really slow down. Around 18 months old is when we really took notice. He stopped saying new words and then words he had already begun to say, he may say once and then never again. I had a list of his words that I kept on the refrigerator. Every time he said a new word, I proudly wrote it on the list. From 10 months to about 18 months it seemed I was adding a word a week but then he seemed to lose interest in talking. We would go weeks without saying a new word.

The biting continued.

I don’t think I would have been alarmed as soon as I was if it wasn't for our friends and neighbors who had babies around the same time I had Taylor. My friend, Jennifer lived down the street from us and had her daughter Rebecca, exactly one month after Taylor was born. We had play dates together and would walk them around the neighborhood with them in their strollers while they laughed and cooed.

As much as we try not to, we as parents do compare our children to others, I am admitting it for all of us, and it was very hard not to constantly compare Taylor to Rebecca with them being so close in age. I remember Jennifer being so concerned because Taylor began walking at 10 months and Rebecca refused to do it. She really was cute though the way she would scoot across the floor with one leg in front and one leg behind her. She was fine, of course and she walked perfectly when she decided she was ready to do it.

It soon became my turn to be concerned as Rebecca began to pass Taylor on the milestones. Taylor had a vocabulary of fifteen words and Rebecca was always talking. I told myself it was fine, just like Rebecca took her time walking, Taylor was taking his time talking. Besides girls and boys develop differently, right? I don’t think I believed it, even then. I knew in my heart something wasn't right.

My other friend, Lisa, had her son 6 months after Taylor was born. Jackson was born 3 months premature and was the tiniest little thing I had ever seen. For the first year of Jackson's’ life, if you asked Lisa how old he was, she would give you his corrected age (for example: he is 6 months old but was 3 months premi so his corrected age is 3 months old) So for the first year, Jackson was "corrected age" 9 months younger than Taylor instead of 6 months younger.

The reason I explain this is because it was watching Jackson that really brought it to my attention on how delayed Taylor was. I remember being over at Lisa’s house one night and Jackson was probably about 1 year-old. The entire time I was there, Jackson let out stream of “mama, mama, mama” or “ball”, or “mama ball” and even "Dawn, ball", "Dawn!". At this time, Taylor had never said “Mama”. Not once. He had no name for me. As much as I loved hearing Jackson say my name I still remember doing everything I could to keep from crying as I imagined what it would sound like to hear Taylor call me “Mama”.

I began to express my concerns. Why wasn't Taylor talking?! If Jackson was talking, certainly Taylor should be! It seemed I was the only one concerned, I think mostly because the only thing that Taylor seemed to be delayed in was his speech. Was I being paranoid? Taylor was just too "busy" to talk, right?

One night, another friend babysat Taylor for us. It was the first time Ginny had babysat Taylor. I was worried that she wouldn't be able to understand what Taylor needed because he was really just grunting at this point. When we picked Taylor up that night, she said he was perfect. She knew my concerns about Taylor’s speech and she wanted to reassure me that she saw a perfectly normal 18-month old. Ginny said she never had a problem that night at all understanding what Taylor wanted. "No problem at all!" She always knew what he wanted to eat or drink or what video he wanted to watch or what he wanted to play.

I loved her for that but I wasn't satisfied. I asked her simply, “what words did he say?” She stood there for a long minute thinking. I could tell that I had stumped her. I said, “He didn't say anything, did he? He grabbed you by the hand and led you to the refrigerator and pointed to what he wanted to eat and drink. He brought you the video he wanted to watch. He pointed at the things that he wanted to play with, right? Taylor is so good at expressing what he wants, that you didn't even realize that he only grunted and didn't said a single word. I am right, aren't I," I asked. The look on her face told me that I was right.

As much as we didn't want to admit it, Taylor wasn't talking like he should. It was time to do something about it. I knew something was wrong. At Taylor’s 18-month check-up, I brought it up to Taylor’s pediatrician. The doctor didn't seem very concerned and told me “let’s see how he is doing at 2 years-old.”

So, we waited.

Before Taylor

I married young. Well, by today’s standards 20 years old would be considered young, but in 1991, I felt like I was almost an old maid. My husband, Mike and I were still in college and not in any hurry to have kids. We knew we wanted children, but our first priority was to graduate college, have good jobs, a good home and make enough money to get us off the Ramen noodles budget.

That is the natural order of things, right? Go to college, get married, start a career, buy a house and have four kids. Okay, the four kids may just have been me, but the future of our lives was something that Mike and I really didn't think about. We just took for granted it would happen in that cookie cutter way. Especially the “having kids” part.

After Mike and I had dated for a couple of years, we began talking about the kids we would have. I wanted four, he wanted three. Maybe we would have twins! We discussed children’s names.  How far apart in age they would be. We talked about what it would be like when they started dating. We dreamed of our family all the time. We were love struck and adorable in our innocence.

Mike’s mother, Charlotte, was so worried when we announced our engagement knowing how much I loved children. Her concern was that we would immediately have kids, quit college and have to live off Saltines and Vienna sausages for the rest of our lives!

Here comes reality. Five years later…no children. Charlotte said to me one day, “You know, it’s okay if you have children now. I’m ready to be a grandmother!” She meant well and she really had no idea how hard it was to hear that. She had no idea that Mike and I had been trying for years. Mike and I didn't talk about it much to anyone else because we were heartbroken.

After 4 years of “not trying but not preventing” we were starting to get worried. I read everything I could read on infertility and what could help us conceive. I took my temperature, I mapped out my cycles, I asked Mike to start wearing boxer shorts. I even stood on my head after sex. God, I wish I was making that part up. You name it though and we tried it! We wanted a family and we were desperate, frustrated and emotionally crushed.

Every month would be the same story. I would be a day or two late, you know, just enough to give me hope, and then I would get my period and my heart would sink. One particular time after starting my period, I remember laying on my bed crying my eyes out for hours, wondering why God was so mad at me.

It was not long after this emotional day that Mike and I finally visited a fertility doctor. After a few more months and by the magic of science [or just that we had finally relaxed and stopped stressing so much] we became pregnant. FINALLY, our prayer had been answered!

We were so happy! We were going to have a baby!

My pregnancy was uneventful…in a good way. I gained thirty, horrible pounds and swelled to the size of the blueberry girl in Willy Wonka, but all was good. I quit smoking as soon as I found out I was pregnant, which was really early since it seemed like I took a pregnancy test every month. By today’s standards, I didn't eat “healthy”. There were no gluten free foods or anything organic. What was that?! My cravings were Kraft Mac & Cheese, milk, cottage cheese and tuna subways from Subway. I didn't exercise at the time but I was twenty-five and thought I would be thin forever. I worked a full-time job though with a lot of nights on over-time. It was my first job right out of college and I was not very confident with my skills. It was a pretty stressful job, as I was always afraid of making a costly mistake but I worked up until the week before Taylor was born.

Taylor came four days before his due date and everything went by the book. My labor was also uneventful. LONG, but uneventful. After sixteen hours of dry-heaving in a trash can and two epidurals later, Taylor was born. (Word of advice. If you think you are going into labor don't eat dinner, ESPECIALLY not Hamburger Helper! Oh God!) 

After hours of exhaustive pushing, the doctor did have to use forceps to help with the delivery. You would never have known it though looking at Taylor. His head was beautiful! Just perfect!  All the nurses said he looked like a cesarean baby. I was confused by this until I finally realized they meant that his head was perfectly shaped with no marks from the forceps and no "cone head" from pushing.

I share all of this with you to let you know that there was nothing abnormal about my pregnancy, labor or delivery. I prayed over my baby every night from the moment I knew I was pregnant and God blessed us with an angel.

Taylor was here and our lives were forever changed...for the better.

Did I give my son Autism?

What causes autism? This has been a firestorm of a topic lately with opinions split right down the middle. After Jenny McCarthy convinced thousands of moms to not vaccinate, I think she is being blamed for the recent outbreak of measles.

Before you read any further, let me be clear. This is about my experience and my guilt and living with the constant question "could I have prevented this?"

This is NOT about vaccinations. I believe in vaccinations and all three of my boys have them. This is just a glimpse into my mind and the constant stir of emotions that come with the question "What if I had done something different?".

“Did I give Taylor autism?”

This is a question that haunts me and I believe it always will.Right after we received Taylor’s diagnosis when he was 2 1/2, I immediately began researching autism. What were the causes? Who was more susceptible? Was there a cure? You name it, I looked.

I remember reading so many different things that would cause a child to have autism. So many!
The first thing I read said that if one or both of the parents were engineers, chemist or artist, their children were at a higher risk to have autism.

Great! Mike is an engineer and I am an artist. Conclusion? Our fault.

Another source said that consuming too much tuna could cause autism due to the amount of mercury in the fish.

 Wonderful! The whole time I was pregnant with Taylor, all I wanted to eat was Kraft Mac and Cheese and yes, you guessed it, tuna! Tuna subways with lots of pickles to be exact. I think I ate one of those for lunch at least 3 times a week. Conclusion? My fault.

Yet another source said that high stress levels during pregnancy could cause autism.

Fantastic! I was working at my first graphic design job right out of college while I was pregnant with Taylor and it was and still is probably one of the most stressful jobs I have ever had.
Conclusion? My fault.

Everything pointed to me and for a while, I blamed myself every day until finally I woke up one day and realized that the summary of all these studies really said one thing clearly.

Nobody knows what causes autism.

These were all just highly educated guesses (and some maybe not so educated). Did I really believe that my tuna subway gave Taylor autism? I hate to admit it but for a while, I honestly did believe that. Did it? Of course not, and I began to move on from beating myself up on a daily basis.

Oh, but then came the studies around the MMR shots. Oh my God! The more I read, the more I was terrified. OH NO! What have I done?

The MMR shot is one shot that contains the vaccine for measles, mumps and rubella. So three vaccinations in one dose. I understood the seriousness of these diseases and did not hesitate when it came to giving Taylor that shot. I knew I did not want my child to die from some horrible disease, so the decision was pretty easily made. This had to be safe, right? The doctors were giving it to all the children. This was for my child’s health and well-being. 

What I didn't do was research and honestly, in 1997 there wasn't a lot being discussed about it. There were no news stories or articles and certainly no social media about links between MMR shots and autism. No one was even talking about autism in 1997 much less publishing studies on it! The doctor said it was time for shots, I took Taylor for shots. No questions. What would the research have told me anyways? Where would I have even looked in 1997 and why would I have? I’m no doctor, which is why I trusted someone with more knowledge than me in this area. Even so, this decision haunts me.

As more and more studies came out, I read as many as I could. I began to feel like the worst parent. How could I not think about it? Three shots at once? Really? I remember reading in one article that the mercury that was contained in the preservative thimerosal, exceeded the limits more than a full grown adult should have in a day. Thimerosal is approximately 50% of mercury by weight  and has been one of the most widely used preservatives in vaccines.

I read more and more but the thing that kept hanging there in the air was the obvious question, “what about the kids who had the MMR shot that didn't have autism?” I mean, wouldn't all kids have autism if it was the shots? This was the answer given by doctors across the board and admittedly, this was a valid point. Regardless, I was convinced I had given my child autism and I wasn't going to take any chances with my other two boys.

My middle son, Brendan had just been born when these controversial studies started being published and I was so confused on what I should do for Brendan. For every article that said MMR shots were the smoking gun, there were 10 more that said it was all a bunch of bull. Still I still felt I was responsible and that I had done this to Taylor.

When it came time for Brendan to have his shots, I was torn. I believed the shots would save him from the terrible diseases but would they give him autism? What we decided to do was split them up and his new pediatrician was wonderfully understanding. She understood our fears and accommodated us.

By the time my youngest son, Jordan was born, the new vaccines that did not contain the preservative were finally available, so of course we chose those. Even then we split up the shots.

Here were the results in my own family. My own “control group” I guess you could say. Taylor had the original MMR shot and has high functioning autism. Brendan had the shots with the preservative, but split up. No autism, but in his early years he had a speech delay. Was it because of the vaccinations or because he was learning skills from an older brother that had autism?  As for Jordan, he is in the gifted class, but aside from being smarter than me,  he is your typical 11 year-old boy.

The studies still continue to be debated but here is what I believe. I believe that my children were genetically predispositioned to have autism and that MMR shot was all that was needed to push Taylor over the edge. There is no scientific basis for my opinion. It is simply that, my opinion.

I would mention my view from time to time when the subject of vaccines came up but the responses I received from most parents just made me want to not discuss it at all. It didn't help the argument that I was torn because I do believe in vaccinations. All I wanted to do was encourage my friends [and you] to do your own research and then make up your own minds.

So, I decided a long time ago that I wouldn't talk about it with anyone anymore. What was the point? A year would go by and I wouldn't hear anything about shots and autism and then out of nowhere, someone with good intentions would strike up the conversation with me after learning I had a child with autism. "Did I read about the latest on the MMR shot?" "Did I know the possible links to autism?" "Did I hear what this whistle blower said?" On and on it would go, and during each of these well-meaning conversations, I would feel the words began to creep up in the back of my head. “I am responsible.” What my friends didn't realize is every time someone would ask me one of these questions, all I could hear was "Did you know you gave Taylor autism?"

 I would push that voice down. I didn't want to hear it, but it would eventually be the only thing I could hear. That voice in my head, drowning out the words of the person in front of me, just screaming at me saying “You gave Taylor autism!!! You did this! It’s is all your fault!”

Was this rational? Of course not, but as a parent I wanted someone to blame and I was the easiest target. Thankfully these conversations were few and far between, but each time it would always end the same way, with me walking away trying not to let anyone see the tears that threatened to reveal my guilt.

Not too long ago, I came across an article on Facebook. The title got me instantly, “Autism and the CDC: Now what?” with the caption underneath reading- "This week it was announced that the CDC may have altered studies claiming there is no link between autism and MMR vaccines. Thanks to a whistleblower who came forward this week with his identitiy - William Thompson, Ph. D. Dr. Thompson has first-hand knowledge of the alleged cover-up"
Tears streamed down my face as I read the article. I couldn't breathe.

This was Facebook though, which meant that it may not be true, but I shared it anyways with my guilt out there for everyone to see.

Immediately the comments started from my friends with links to articles that said otherwise. Telling me that I was an amazing mom, that Taylor was amazing, that it was not my fault. This was not why I posted the article. I wasn't looking for someone to hug me and make me feel better. What I was trying to do was give parents information so they could make their own decisions. I wish those articles had been around 17 years ago for me but they were not.

You know what though? Who cares? I can't do this anymore! How is this helping me? More importantly, how is this helping Taylor?

It doesn't matter. At least not for our family. What is done is done. Taylor has autism. Period. Why does he have it? I don't know and if I did, there is nothing whatsoever I can do to change it. The fact is this. Regardless of what studies prove, I will always, ALWAYS wonder what would have happened if Taylor hadn't received that vaccine or if I hadn't been stressed during pregnancy or if I hadn't eaten tuna sandwiches... ALWAYS. The problem is that wondering and daydreaming about the “what if’s” do not help Taylor today.

Taylor has autism. It doesn't matter to him why. What does matter is giving this child the best life possible and if I spend my time blaming myself, the doctors and life then, I am wasting valuable time that could be spent on something more productive, positive and beneficial.

Did I give Taylor autism? YES. He is my child. I gave birth to him. I gave him the blood running through his veins, his lips, his blue eyes and his blond hair. I gave him his broad shoulders, his skin color, his love for art, his DNA and so it goes with reason to say that I also gave him autism however it came to be.

Okay, so that has been established. Let’s move on.

Introducing Taylor

My name is Dawn and I am a mother of three boys, Taylor, Brendan and Jordan. All three completely own my heart and I make my world complete, but the one I want to introduce to you today is my oldest son, Taylor.

Taylor will be 18 years old next month and he is my oldest. In just a few short months, he will be graduating from high school and will start preparing for life's new adventures, but Taylor will not be taking the typical path of most 18 year old high school graduates.

Taylor's life after high school will be different because Taylor has autism and he is the inspiration for this blog.

I have wanted to write a book about our adventures for years but as you can probably imagine, life with three boys can be really busy. What I have chosen to do instead is write a blog . This blog will be about what life with autism has been like for my family. From the beginning to the present  and in no particular order.

I hope that through this blog, Taylor will give hope to the new parents who may have just received the diagnosis on their child and maybe by sharing some of the lessons my husband and I have learned over the past years, we will be able to help other families who have children on the spectrum.

I do not pretend to know everything. I am no expert. I am just a mom who's child was diagnosed with high functioning autism fifteen years ago, but maybe I can use my experiences to help and if not, at least give you some stories that may make you laugh.