Holland Vs. Italy

When Taylor started pre-school, the differences between Taylor and his friends became more and more evident.  To add to it, the things that I had in common with my friends became less and less. I went through many times of mild depression and heartache because I felt that Taylor, Mike and I were being left out of so much.

To say that I wasn't jealous of my friends would be a lie.  To me it seemed the worse problem they had was how their child’s t-ball practice or dance practice took so much of their time. I wanted more than anything to find myself complaining about dirty baseball uniforms and muddy bathtubs.


I felt like none of my friends could relate to me, and honestly they couldn't. I’m not saying they didn't try but it was so hard to explain what my family went through on a daily basis. Taylor was adorable and won the heart of anyone he met so it was difficult to explain the sadness that I felt. Not because of Taylor but FOR Taylor. I wanted him to have the childhood other kids had and as a young mom just learning about this autism thing, I felt like he was being left behind. I felt like I was being left behind, too.

There is a loss that you feel when you first hear that your child has any kind of health problem. (I refuse to call Autism a mental illness!) I've said this before but when you are pregnant with that baby, there are so many things that you just take for granted are going to happen. You just assume your child will say "mama" and "dada"when they are supposed to. You expect to be sitting at peewee games. You joke with your spouse about how when your child gets older and starts dating you're gonna be a tough Mom and Dad! These are milestones that you just expect to happen and when it begins to sink in that this parenthood thing isn't going to go the way you always thought, there is a sense of mourning. In those early years, I didn't know that was what I was doing, but in my on again/off  again depression, that's exactly what I was doing. I was mourning the life I had dreamed of for Taylor.

Listening to other kids who were Taylor's age carrying on conversations while I was still trying to get Taylor to use his words to tell me simple things, would get me choked up on occasion. Taylor had his good days and his bad days and it’s safe to say that the cycle was the same for me as well.

One day, my friend Ginny called me and was excited about something she had heard in class that day. She was studying Special Education and that afternoon they were discussing what it meant to be a parent of a child with Special Needs. Her professor read this poem to her class by Emily Perl Kingsley and Ginny couldn't wait to share it with me.

Welcome to Holland

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


I had never heard this analogy before but I thought it was perfect. Ginny was excited because she felt that NOW she could understand our family situation a little better. I didn't write this poem down, my brain memorized it instantly and that’s saying a lot because I have terrible memorization skills. I remembered almost word for word because it was the truth and I grabbed onto it hard.

This poem expressed how I felt so beautifully. It was so hard for me to explain how much I loved Taylor for who he was, yet how sad I was because we didn't have the “Normal stuff”. Normal stuff like playing ball with his dad, having  t-ball practice with the other four year old boys. Having a friend that he wanted to see all the time. We didn't have play dates unless I was visiting my friend that just happened to have a son his age. I wasn't hearing the cute phrases from him that my other mom friends would share with me about their children.

I wanted Taylor to “fit in” so badly. I admit part of that was pure selfishness because I wanted to “fit in” too. I wanted the ball sticker with his name on it on my back windshield, too. I was on the constant lookout for activities that Taylor could do. When Taylor was four, I signed him up for gymnastics. He loved to climb and tumble and I just thought this would be perfect for him. I was so excited for him and I couldn't wait for his first class.

The first day was a disaster! The children were in one room and the parents sat in an observation room so we could watch our kids practice through a glass window. While all the children sat quietly and listened to instructions from their coach (in the manner that four year olds do) Taylor was up within the first minute, walking around the room, doing his own thing.

Ten minutes into the first class, the coach makes eye contact with me through the window and motioned for me to come in there. I was crushed.

When I walked into the room she tells me quietly, “I need you to stay in here. I can’t instruct my kids with Taylor running around.” It felt like a stabbing pain. In just one sentence, Taylor was no longer one of her kids. I realize she probably wasn't even aware of  how she said it but she was right, of course. Taylor was a disruption to her class and once again we were the odd ones out. I had to sit in every class with him and ended up working with him one-on-one as I tried to listen carefully to the coach’s directions and keep Taylor from running around the room.

Understand, this was hard work for me! I am not saying that Taylor listened much better to me, either. There were rules to follow but all he saw were a bunch of mats that he could climb on and jump and tumble. I was always exhausted and sweating by the end of the 30 minute class with Taylor having learned nothing from the gymnastics coach.

The moment that finally did me in was during his eighth class. Yes, I remember it well. We were all sitting down in row. Me sitting with six or seven, four-year olds and holding Taylor very tightly in my lap so that he wouldn't jump up and run off. I was still trying to make this work. I wanted so badly for this to be his thing. Taylor was squirming. He didn't like to sit still and was ready to get up and play. It was only 5 minutes into class and I was pouring sweat from trying to sit still with Taylor. Sitting next to me was the most adorable little girl. She looked at Taylor and then looked at me and said, “He doesn't listen very well, does he?”

I looked at her and said, “No baby, he doesn't but he’s trying.” I spent the next twenty-five minutes fighting back tears. The whole way home, I just sobbed, quietly though because I couldn't let Taylor see me cry. I wasn't crying because she said that. I was crying because she COULD say that, and Taylor couldn't. I was crying because I felt like a failure. I was crying because Taylor DIDN'T listen very well. I was crying because I couldn't sit in the observation room with all the other parents.

I was crying because I was in Holland and they were in Italy.

I want to tell you it's okay. If you are going through these very same feelings, you are not a bad mom or dad, you are human. It's when the sadness becomes all consuming that you need to take a step back and maybe talk to someone about it.

It was a bad day. They happen. Thank God 90% of our days are good. I promise, I will share those with you too.

What's Next?

When I started this blog a few months ago, my goal was to post at least once a week. I had a simple plan. The posts would vary in subject but all relate to each other in the matter of things that I have learned (so far) as parent of a child with autism.

 I started the blog by going all the way back to where it all began, when Taylor was born. I think I even stated that I would be making posts in no particular order. I have to admit though, I am a bit OCD and I love to read a story in the order of events. That being the case, I have found that I will get stuck on what to write about because, well, Taylor is eighteen years old and I have so much to talk about! 

Sometimes though, I procrastinate because I end up talking myself out of a post, wondering to myself, “Will this be relevant?”, “Would this post be helpful to someone?” “Will anyone even read this?”

I do feel that if my blog helps one person, that is enough but I have discovered that on some days, that one person just may be me.

So, once again I have been stuck, looking at my laptop, procrastinating each day. Making up one excuse or another to not have time to post that day. This time is different though. It is not because I don’t know what to write about, but because I do know, and it scares the hell out of me.

You see, Taylor is about to graduate from high school in May. Let me first start by telling you how incredibly proud I am of this kid! Taylor is getting the Standard Academic Diploma and I really don’t know if I can explain how freaking hard he has worked to earn this diploma. It’s been a tough twelve years.

My husband and I have spent the last seventeen years focusing on helping Taylor be the best that he can be. School, obviously was a huge focus along with speech therapy, social skills groups and lets not forget MATH. (Not all people with autism are good at math!) Teaching him how to study and how to take tests? I got that! Taking him to speech therapy several days a week when he was younger? I got that, too! These things were just life and we did okay. We all worked hard and we made sure we had fun, too.

So why am I scared?? 

Everything is about to change for me, my husband and Taylor and maybe for my younger two boys.

I have spent a large portion of my life as the mom of a child with autism. I accepted it. I embraced it. This is our life and we will enjoy every moment of it… but now I am about to be the mom of an ADULT with autism. This is incredibly scary to me and even now I am struggling with words as I fight back tears.

What happens now? All these years I have focused on the "here and now" but with that was also the thought deep in the back of my mind, “what happens to Taylor when we are gone?”

Being the parent of an adult with autism makes me very aware of how much closer my husband and I are to not being in this world with our kids. I know that is a morbid thought, and no, I am not dying, but it would be irresponsible to not think about Taylor’s future without my husband and myself. This is reality.

What happens? Will he be okay? Did we do everything right?

When Taylor was little, I would think “What happens if something were to happen to Mike and me?” This thought drove me to teach Taylor how to wash his own hair and bathing himself when he was five years old. He was making his own bed and cleaning his room on a daily basis at the age of six. When he was ten, we taught him how to wash dishes, cut grass, separate his own clothes for me to wash, make his own sandwich. Things that were just chores and everyday things for other kids, were huge accomplishments for Taylor.

I can say with confidence that Taylor can take care of himself to a large degree. That kid is probably the cleanest boy I know. It’s a routine for him. If the green light is on the dishwasher, he empties it…sometimes to detriment of being late or getting homework done. “Green light” means “empty dishwasher”. (Don’t ask him to load it though, he will quickly tell you that is Jordan’s job!) He knows garbage day is on Tuesdays. If we forget to gather the trash, he has been known to wake up at midnight and put the trash out.

If he comes downstairs and sees that my husband and I are watching a movie, he will make us popcorn, regardless of if we want it or not. He doesn't ask us but we always accept our popcorn and thank him every time. “Movie” means “popcorn” and he just showed us he cares.

Routines.
Specific jobs.
Schedules.
Rules.

Taylor can handle all of this, but what’s next?

Everyone keeps asking me.

“What is Taylor going to do after high school?” “What will he do now?”

It’s a legitimate question and really, I don't mind the question but it brings to light that not many people know what happens next for these kids as they move on into the adult world. We do have plan for the next year, but after that? I don’t know. That’s another scary part.

Next year, we are hoping he gets into this program called “Project Search”. It starts in August and goes through May, so it’s like a school year. We have explained it to Taylor that this will be kind of like his college. This program is specifically designed for older kids with special needs who are coming out of the school system. It’s like a vocational college where they will help Taylor discover what jobs he is best at (my guess is something with animals) and he will learn how to work with employers and employees. 

It’s a start but these past few months have made it very clear to me of this need in the Autism Community. These kids are smart. They have goals. They have dreams and they deserve a chance to be involved with their own future. To have a say in what happens in their lives, not just sit in a room watching videos on YouTube all day. That’s not a future I want for Taylor and I know he doesn't want that either, but he needs us to help him find his way.

Taylor WANTS to go college…I believe he will! He is just not ready quite yet to be away from us and to take on the workload that college classes require and I am not going to set him up for failure. If you ask Taylor what he is going to do after high school, he will respond without hesitation, "Work with horses."

My big dream for Taylor is that he finds a job on a farm working with his favorite animal, horses. I dream that he meets a sweet girl and they fall in love.

If Taylor lives with us for the rest of our lives, we are prepared for that, but Mike and  I are not going to assume that is his future. I believe with all my heart that he is going to make a difference in this world.

Every year, I schedule a meeting his teachers  at the beginning of the school year so that I can introduce myself and tell them a little about Taylor. I always say to them, “Don’t put any expectations on Taylor.” I let that sink in for a moment and often received some startled looks from them. Then I would say it again with more emphasis and make my point clear, “Do not put ANY expectations on Taylor, because if you do, that’s all you will ever get from him. Put no limits on him and Taylor will EXCEED ALL YOUR EXPECTATIONS.”

He is going to exceed mine, so I guess it’s time to buckle up because the new ride is about to begin. It may be scary, but aren't roller coasters supposed to be?

Early intervention, Love and Acceptance.

Mrs. Ashley and Taylor on a field trip to Baker's Farm.

Soon after our meeting with the psychologist and receiving the “Official/Unofficial” diagnosis for Taylor, (I refuse to call this an official diagnosis and you can read about that horrible experience here) we continued to seek out people that could possibly understand what we were dealing with and help us determine what steps we should take next.

There weren't many people to talk to and for the most part, we still felt like we were on our own but we were determined. It also helps that I am a pretty stubborn woman. This was my child and I was ready to kick autism on its butt, whatever that may mean.

Taylor was already receiving speech therapy so we were ahead of the game on that but we understood that this may be something we would be dealing with for a lifetime. Mike and I continued to pray that this was just a developmental delay, not autism, and that Taylor would grow out of it like my friend’s son did. I think every parent who has a child with autism prays this prayer but we knew that we still had to be proactive. We wanted Taylor to have as much help as we could get for him. We didn't know much about autism but we knew we weren't going to just sit around and just give up without trying everything in our power.

A good friend of mine told us about a program at an elementary school in the town next to us that sounded perfect for Taylor. It was called the Eclipse Program. The class took children, ages 3 years – 5 years, and was an even mix of Special Needs children combined with Typical children. The one good thing about that doctor’s diagnosis was that it got Taylor in this class in the middle of that school year without have to go on a waiting list. A diagnosis is so important to help you get the help you need!

When we began to accept that Taylor had some form of autism, my first thought was “I should have kept him home. I shouldn't have put him in daycare.” I have said it before, but as a parent I will always wonder what I could have done differently.  This was one of those things. Daycare, as it turned out, was something that Taylor benefited greatly from. Although staying home with Taylor was not financially possible for us at the time,  looking back on it I realize that daycare was the absolute BEST place for Taylor to be when he was a toddler.

Why?

Well, where else was he going to learn how to be around his peers and learn to communicate with them? Where else would Taylor learn how to engage with other children and play with them without judgement? Toddlers don’t care if you can't talk, they just accept you for who you are. Daycare proved to work as a social therapy process for Taylor. He wasn't good at those social skills but he was much better than he would have been if I had hired a nanny and kept him at home.

I realize that this is not the case for all children with autism but for Taylor, daycare was very helpful. The Eclipse Program was even better! As soon as the Eclipse Program accepted Taylor, we pulled him out of daycare and he started going to school at Creek View Elementary. Taylor went to this school 5 days a week, 8:00-2:00. They let the Eclipse class out before the “big kids” got out of school to help keep the stimulus and chaos for these kids to a minimum. You don’t want a 3 year-old being run down by 3^rd graders regardless if they are special needs or not.

This Eclipse Class was such a Godsend and I believe this program should be in every single school! The class had one teacher (Mrs. Ashley is AMAZING!) and two teacher’s aides. This broke down to a student-teacher ratio of 4 to 1. Taylor received constant therapy through the class time work and games they played. He was also pulled out of class several times a week for speech therapy and occupational therapy. The typical kids worked as role models for the special needs children. Taylor was still learning how to act socially and if he had been in an environment with only children on the spectrum, that's the only behavior he would have learned. For the typical children in the class, they learned acceptance and patience and how to help their friends.

Taylor also learned how to charm the teachers, the aides, the office staff and even the principal! By the time he graduated from the Eclipse Class  when he was five, I think he had every teacher in that elementary school wrapped around his finger. He was adorable and it was ridiculously funny! It was also amazing! The progress we saw with Taylor during this time was phenomenal and the love the teachers had for him was unmistakable. It was for these reasons that we sold our house and moved so that we could live in this school district. The last thing we wanted to do was remove Taylor from an environment where he was accepted and loved and where his teachers expected the best from him. They saw his potential and they worked hard every day to help Taylor improve.

I know we are very blessed to have had this experience with the school system. I have heard some very sad stories and I wish every child had the kind of support system Taylor had (and still has). THIS is the way it should be! What makes me sad is that the school system ended the Eclipse Program a few years ago.  Even though Taylor was already in middle school when this happened, the sadness I feel for the children that have been denied such an amazing service is impossible to express.

Another amazing thing about the Eclipse Class was that it was free for children with special needs. This was SO IMPORTANT for us. We were young and financially strapped, still on that Ramen Noodle budget it seemed, borrowing from one credit card to pay on another. There was no way we could afford to pay even $40 a session with a speech therapist three times a week. Education is free for typical children, shouldn't it be free for our children with special needs? Luckily, we lived in the right place at the right time, but even so, we wouldn't have known about the Eclipse Program if not for my friend who knew about the program because she was a teacher.

One of my goals through writing this blog and my book is to bring a greater awareness to how important programs like this are to our children, the "special needs" as well as the '"typical" children. One of the reasons Taylor has done so well in school is because the "typical" kids in he school accept him. He's just Taylor to them. He has had friends through the years that have stood up for him, taken care of him and just been his buddy. Acceptance goes so much farther than you would think. The kids that surround and love him own my heart!

When I was a kid, the Special Education class was separated from all of us "regular kids".  We never crossed paths and if we did see them, we had no idea how to interact with them. I remember as 6th grader actually being scared of them because I just didn't understand. I remember one time in particular. I was checked out of school early and there was a girl with down syndrome sitting on the front steps of the school waiting to be picked up because they got out earlier than we did. When I walked by her, she reached out to grab me and said something I didn't understand. I was terrified and ran down the steps to my mom's car.

I remember this so well and when I look back on this it makes me incredibly sad. She just wanted to say "hey". She may have just wanted a hug or maybe she wanted someone to sit down with her while she waited for her mom. It is because of this girl in 6th grade that I had made the decision when I was pregnant that my child would be in an inclusion class. I never wanted my child to be afraid of someone with special needs. I wanted them to be the friend they needed. Little did I know that my child would be the one who needed acceptance.

I am also forever grateful for the teachers and care givers he had in his life through this Eclipse Class. I truly believe that Taylor would not be where he is today if it had not been for the Eclipse Program and his teacher Mrs. Ashley, his aides, Mrs. Joyce, Mrs. Tracy and Mrs. Dee, and his speech therapist, Mrs. Liddell. I hope they know how much they mean to me and I pray that other parents will have someone like these ladies in the lives of their children.

Our children deserve that.

From the bottom of my heart, 

Thank you.

Dan Marino and the Information Highway

In 1994, this commercial for the “Information Highway” had me losing my mind. I remember watching a young Anna Paquin being kind of creepy and then looking at my husband and saying “What the hell does she mean?!” I couldn't stand the commercial because I felt like I had just watched some clip from a 70’s hippy movie and must be lacking the drugs to understand it.

What was this “Information Highway”? I would soon learn that 1994 was the beginning of the future with the Internet, AOL and Yahoo (Google would come much later) although I really wouldn't get the full comprehension until five years later.

After Taylor’s first diagnosis, I began to explore this new world of the internet, complete with Yahoo searches and chat rooms, trying to find as much information as I could. The internet was nothing like today. Only people in their 40’s and older can really appreciate what it means to spend hours trying to download a file. That being said, this was a whole new world of resources available to me and I spent a lot of time on the internet just trying to find someone who was going through the same thing we were.

I met my sweet friend, Mary in a chat room on Parent’s magazine website. Both of us were dealing with the same issues with our 3 year-old sons. I had finally met someone who got it! She understood my situation and my fears. We became each other’s support system in those early years. Although we lived in separate states, this internet thing made it possible for us to connect and I am so grateful for that.

Then there is Dan Marino.

I have been a Miami Dolphins fan since I was fourteen. I am from Alabama and we do not have an NFL team but every Sunday my friends and I would get together to watch NFL football. I had to choose a team, right? My reason for becoming a Dolphins fan was perfectly reasonable… I loved their uniform colors! It only took watching a few games though before I knew I had chosen the right team. Dan Marino was amazing!

Over the years, I became more of a Dan Marino fan than a Dolphins fan and watched every special on him that I could. Okay, I may have been a little obsessed.

After Taylor’s diagnosis, I remembered back to an interview with Dan Marino when he talked about his son, Michael who has autism. I began to search for more information on this to see what I could find. What did Marino and his wife do? When did they find out their son had autism? What was their son like now?

This search gave me a job to do but more importantly I think, I began to feel less and less alone. I know that is silly, but here was my football hero since I was a kid and yet we had this in common. I became aware instantly that autism was not prejudice. It doesn't matter what you do for a living, who your parents are, what kind of money you make, what color your skin is. Autism doesn't care.

In my on-going search for answers and solutions, I came across a transcript of an interview with Marino where he talks about the first signs of autism that he noticed in his son. The more I read, the more it sounded like he was describing Taylor! In this transcript was a section where they talk with one of Marino’s sons, (he has six children).

It was reading this part, this insight by his fourteen year-old son, which gave me the most hope. When I started reading, I thought it was his older son they were talking with.  Then, a few paragraphs in, his son says “People ask me all the time what it is like to have a brother with autism. They are always surprised when I explain to them that I am the one with autism.”

WHAT?!

I read it again. This was Michael Marino?! Now I was REALLY intrigued! My very first thought was “he can talk and he can talk well!” Could this happen for Taylor?

As I continue to read, I was fascinated, holding onto every single word. Michael then said something that would stick with me and help me with Taylor for years to come.

He said that he remembered when he was six-years-old and his mom would always demand that he look at her while she was talking.

I did this to Taylor all the time. Most parents do, no news there, right? Courtesy and respect. It’s important.

Then he went on to explain that all he knew was that he couldn't do it. He could look at his mom or he could listen to her but he was unable to do both. More importantly, he did not have the words to explain to his mom that he could not do both.

Oh WOW! This was LIFE-CHANGING for us in the South household and after we tested this theory out, immediately changed the way we talked with Taylor. First, I experimented just to see. I would have Taylor look at me while I was talking to him and ask him a specific question then I would wait until he looked away and ask him the same question.

Nine out ten times Taylor only responded when I allowed him to look away.

This was just the beginning of things but it gave me hope. It was a solution to a problem. I am a fixer and I felt like I had just accomplished something HUGE!

So, Dan Marino, in case you EVER come across this blog, I want to thank you from the depth of my heart. Thank you for sharing your story. Thank you, Michael for sharing your story. You both changed our lives and I am forever grateful.

We got this, Taylor!

Hearing the word “Autism” for the first time.

What a traumatic day that was for me. Autism. What was this? I didn't really know much about it, but it didn't sound good.

We had been keeping our speech therapy sessions religiously, never missing one. I was on a mission to teach this child how to talk. Taylor's words were coming one by one and my list on the refrigerator was finally beginning to grow but he was still unable to come up with his own sentences.

What I mean by this is that Taylor was learning how to talk by putting full phrases together, not words. An example would be how he always used the phrase, “Can I have more, _________" and then would insert whatever word would work.

He would talk with his videos and his words were becoming more and more clear. People could understand what he was saying a little more easily now. Jungle Book and Mary Poppins were his favorite videos and he would watch them over and over again.


(Here is a sweet video of Taylor dancing to Mary Poppins. I swear I could understand every word he said.) 

One night, Taylor amazed and entertained Mike and I for two hours as he stood on our bed and recited word for word, the entire movie of the Jungle Book, complete with the voice inflections. He was two and a half. Looking back I realize he probably grunted most of the words but we knew what he was saying and Taylor knew what he was saying. We loved every moment of this impromptu play but it did get me thinking. The speech therapy seemed to be working, but something still wasn't right.

The next time I saw his speech therapist, I told her what was bothering me. I asked her, “Why can Taylor recite an entire hour and a half long video to me, can say phrases that you are teaching him, but still cannot make his own sentences? Why can he say the words, ‘outside’ and ‘I’ and ‘Go’ and ‘Want’ but cannot figure out how to put these words together on his own to say ‘I want to go outside?’”

His speech therapist looked at me and I could tell she was flustered. She knew something was up but wasn't saying anything. I could see it in her eyes. Instead she said, “Let me see if I can get our child psychologist out here to see Taylor.” She wouldn't tell me why, just that she wanted to rule some things out first.

I wasn't ready for what I was about to hear. I will let you know that right now.

I WAS NOT READY.

The psychologist came out the next week. She spent about thirty minutes observing Taylor. Playing with him, asking us questions. To Mike and I, they were strange questions. I remember it like it was yesterday. Here’s an example of some of these questions.

Doctor- “Does Taylor have a high tolerance for pain?”
Me- “Well, last week he stuck his finger in hot candle wax at a birthday party and didn't even cry. Does that count?”

Let me pause right here. The reason I even mentioned this incident was because Taylor had just done this the week before. The one and only time that it seemed something didn't hurt him.

Also, at this exact moment, as if on cue,Taylor dropped a Blue’s Clues video tape on his big toe and immediately grabbed his toe, hopped around and started crying. It took his dad kissing it to make it better. THIS IS IMPORTANT TO REMEMBER!

Doctor- “Does Taylor like textures?”
Me-“Well, he loves getting the fall leaves in his hands and crunching them next to his ear so he can hear the sounds.”

Doctor - “Does he have a sensitive gag reflex?”
Me- “Yes. Very sensitive.”

Doctor- “Is he affectionate?” (While she has been asking us these questions, Taylor has been jumping off the couch into her arms. He has also been pulling on her bag because he thinks she is there for a “play time”. He is totally aware this woman is standing in our living room and he wants her undivided attention because he wants to get rewards like he does when his speech therapist comes.)
Me-While looking at Taylor jump in her arms, “Well, yes…obviously he loves people! “ I said pointing to him. “He loves kisses and hugs and cuddling with Mommy and Daddy, don’t you Taylor?” At that moment, he leaves her and comes over to me so I can pick him up and love on him.

Let me explain something real quick. My husband and I had NO IDEA what this doctor was looking for. We thought she was going to tell us why he wasn't talking. It was at the end of this 30 minute “interview” that she first mentions autism as a possible diagnose…as she is walking out the door. She told us to expect her report within the week.

We are stunned.

When she leaves, I break down and cry. I felt like the floor had been ripped out from under my feet and I just sank into the couch. The only thing I knew about autism at that time was from the movie Rain Man. One thing I did know was that my Taylor WAS NOT like that! Not even close! What the hell?

I was a mess. Part of me felt a sense of relief that I wasn't going crazy and that I had something to research and tackle, but the other part of me was devastated. She had to be wrong. What if she wasn't? Why him? WHY?!

A week later, we get the report. In the report this doctor states that: 'the parents have noticed high tolerances for pain',  and 'the child is non-affectionate', 'child appears to be severely delayed in speech' and 'indifferent to my attention and appears to be socially delayed'. It then went on to diagnose him as having severe autism and suggested that there was a high possibility of having to place Taylor in a special institution in years to come.

LET ME STOP RIGHT HERE. I am about to use explicit language so, you may want to skip the next few sentences.

Breathe Dawn…

This woman should lose her f**king license!  Was she even paying attention?! After spending approximately 30 minutes with my child, she writes a report describing some random child. Certainly NOT the child that had spent the entire time she was there with him trying to get her attention. This report could not possibly be about the child that was crying because he hurt his toe, while she stood there watching! She didn't even quote us correctly.

Did she just make sh!t up?! I was FURIOUS! Enraged! I called my husband in tears and read him the report. He honestly thought we got someone else’s report. I was beside myself, almost hysterical! Okay, fine. I was hysterical!

Here is what scares me the most. What if we had believed her? She had recommended that we put my child in an institution! The curse words I want to say right now just remembering this would make you blush. Almost sixteen years later and this still infuriates the hell out me.

Here is the important thing that I want you to take away from this. Believe your heart. Trust your instinct. Don’t just get one opinion. Don’t just get two! Do your research.

That’s what we did. We looked up everything we could find on autism. We did the tests with Taylor. Some he passed, some he didn't. We read everything we could find. What about diet? What about social therapy? Read, read, read. Research, research, research! That became our world.

The one good thing that came out of this awful report is that it lit a fire under me to prove this woman wrong. I had something solid I could research. I was no longer playing a guessing game with Taylor. I had something I could grab a hold of and fight. We learned that autism meant more than Rain Man.  We learned a lot!

Autism.

Okay.

We got this, Taylor!

We are all in this together and we will do everything in our power to make sure your life is amazing.

Doctors be damned!

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.