"Happy Birthday" is the worst!

As Taylor continued through elementary school, we learned more about what sensory sensitivity was really about and how difficult it can be to find the source of the discomfort.

Some things that I thought would bother him wouldn’t faze him at all. Loud music? Taylor LOVES loud music with heavy metal being his favorite. Even today, if a song comes on that he likes, we have to turn it up, while he simultaneously listens to a completely different song through his phone. With one headphone in, he would listen to both songs together.

Personally, this is where MY sensory sensitivity hits. It drives me nuts! How he handles that all at once, I may never know. It gives me a horrible headache, but he seems to be able to separate out both songs as he listens and enjoy both of them.

Commercials? That’s a big “No”! It doesn’t matter if it is on the radio or the TV, if a commercial comes on, no matter where he is in the house, he will run into the room, almost at a panic, and turn it down while holding his ears.Taylor even learned how to hold both ears closed using only one hand. He will shrug one shoulder up to it cover his ear while using his left hand to cover the other ear. This way, he still has his right hand free to continue doing whatever it is that he is doing. He has done this since I can remember.

Why don't all loud sounds bother him? Great question. Excellent in fact.

I have no idea. This is one of those mysteries I have yet to solve.

One thing that has made his life better are the headphones. He has them with him at all times and it has helped him deal with environments that otherwise may be a sensory overload. If a place is too loud or has a noise that bothers him, he just puts on his headphones and listens to his favorite songs or videos.

When he was still little, one thing that was guaranteed to send him into a full blown panic attack was the singing of the “Happy Birthday” song. We learned this the hard way when Taylor was 18 months old.

The whole family had all gotten together one evening that just so happened to also be my mother-in-law’s (MeeMaw) birthday. When we arrived at Mike's uncle and aunts house, MeeMaw met us in the driveway and got Taylor out of his car seat to carry him inside. As soon as MeeMaw walked into the house holding Taylor, Mike's uncle broke out into the loudest, most off key song of “Happy Birthday.” It was hilarious…to everyone but Taylor.

Taylor started crying and we could not get him to calm down. Mike's uncle felt so bad, but Mike and I told him that Taylor was just tired that evening. I don’t think it was the loud singing that made Taylor cry, I think it was because everyone joined in and also started singing together. No less than ten people were singing. Not one person was singing in key. No one singing in sync. 

Think about it. 

How many times have you listened to people sing “Happy Birthday”? Now try and think how many times it sounded GOOD. You’re struggling for an answer right now. I'm right, aren't I?

When Taylor was three, we went to one of his friend’s birthday parties. As we all began to sing "Happy Birthday" to her, I saw Taylor run out the back door. I ran after him and found him hiding under the back deck, holding his ears tight, curled up in a ball, crying his eyes out.

Okay. This was real. For whatever reason, Taylor couldn’t handle this song. He was completely inconsolable. I ended up sitting under the deck with him for almost thirty minutes trying to redirect him so he could move on from this song.

At Taylor’s fifth birthday party, I made sure to tell everyone not to sing “Happy Birthday” to him. They waited until he left the room and sang it anyways, leaving me wondering "who is this party really for?"

That was Taylor's last birthday party. Every birthday after that, we went somewhere special and had a much happier birthday boy.

One thing I know for certain is that I cannot change the world for Taylor. People will continue to sing “Happy Birthday” in Taylor’s presence. 

Now, when we go to birthday parties, I give him a head’s up. I walk up to him and whisper in his ear, “Taylor, they are about to sing ‘Happy Birthday’. Taylor takes that moment to put on his headphones or leave the room and then comes back after it is over. We have learned how to handle it. More importantly, Taylor has learned how to handle it.

Your first thought may be, “Well, the answer is simple. Just don’t go to birthday parties.”

Okay. Let's think about this because that was my first answer, too. 

It didn't work.

How many times have you been out to dinner and the waiters and waitresses start suddenly singing happy birthday to someone in the restaurant?

How many times have you walked into church or maybe a soccer game or a lunchroom and everyone decides to sing happy birthday to someone?

I can tell you that it happens more than you know. If it doesn’t affect you, then you don't really think about it. When you have a child that has a meltdown when he hears it, believe me, you will remember every single time it has happened. Having a panic attack over the birthday song may sound silly until you see it happen. I can promise you, there is nothing “Happy” about it.

Then, Taylor discovered YouTube. He found new ways to sing “Happy Birthday” and would ask if he could play his videos at birthday gatherings instead. The irony is that most of the versions he found were far more obnoxious than the original, but Taylor loved it. They made him laugh, so they made us laugh, too.

He still does this today. I always ask if we can sing and what we usually get is “how ‘bout this instead?” and then he will show us a new version on YouTube. The video below is from his last birthday. He let us sing with his video, then he had to listen to the video without us singing.

We have fun with this now and it is no longer a traumatic experience. It took us a few years, many tears and trials and errors but we learned a way around it. Taylor learned a way to function with this discomfort and that is what Mike and I work so hard to help him do. 

Our goal is always to teach Taylor how to handle things that are stressful to him and handle himself well in this crazy world of ours.

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.