Monday, January 22, 2018

From Non-Verbal to Telling Jokes. A Taylor story.

“Nearly a third of people on the autism spectrum use no spoken language or only a few words.
All of these individuals could be described as having nonverbal autism. Yet the term nonverbal autism" has no official status, and there is no such diagnosis as ‘nonverbal autism.’ In part, that's because there is no clear line between verbal and nonverbal individuals with autism.”

I have told many stories to friends about how far Taylor has come since he was little. Most of my friends only know the Taylor from today. The joke telling, movie loving, sarcastic but hilarious Taylor. Those that haven’t known him his whole life have a hard time imagining him being non-verbal. Yet, there was a time that he was considered just that.

Do I really mean “non-verbal” when I reference younger Taylor? To a large degree, yes.

I know that there are people with autism that are literally non-verbal, as in “no words can be spoken out loud”. This was the best way to describe Taylor up until the age of 3. I realize this is very young, but if you are a parent of a typical child, you know the words start coming shortly before they turn one year old.

Honestly, there is not a perfect category that he fits into but when Taylor was younger, “non-verbal” seemed to be the best description we had.

By the time he was 2 ½ years old, he had a total of 24 words. I know this because I had a list of his words on the refrigerator. I also know, even though I didn’t want to admit it at the time, that some of those words were said once and not again. We considered this “non-verbal” because Taylor was unable to tell us with his words, his wants and needs.

Being “non-verbal” did not mean that Taylor was unable to communicate. He was actually pretty good at using expression, pointing, jumping and even grabbing adults hands to pull them along and show them what he wanted. Being “non-verbal” also did not mean that he wasn’t a funny, silly, happy or loving little boy. He was all of those things but my husband and I wanted more for him and we longed to one day have a conversation with him. We envied the parents who told us stories about how their child made them crazy because they NEVER stopped talking. Mike and I wanted to be driven crazy, too! Oh, the things we take for granted.

There were no smart phones, tablets or iPads when Taylor was little, so we depended on the old school pic syms and pointing. We started him in speech therapy when he was 2 ½ years old and he remained in speech therapy until he graduated from high school.

This was a journey. It was hard work and I think it speaks volumes for Taylor that people today can’t imagine him not speaking.

We realized that his two visits a week with the speech therapist just wasn’t going to be enough. He needed more and it needed to happen at home. My husband and I knew that if Taylor was ever going to have a back and forth conversation with us, we were going to have to help him every single day.

Around second grade, Taylor was finally talking in broken sentences. He was able to get his idea across but without any of the “fluff”. (The “fluff” is what you and I would call unnecessary details and/or “chit-chat”.)

This is where “leading” came in. You have heard the term used in other instances, such as “leading a witness”.

Here is the definition for a “leading question” in terms of this example

leading: lēdiNG ˈkwesCH(ə)n/
noun: leading question; plural noun: leading questions
a question that prompts or encourages the desired answer.

“Leading” was the next big step for Taylor in learning conversation skills.

When you pick up your child from school, the car is usually loud and full of excitement as your child tells you all the things they did that day at school. Down to the little details like what they ate for lunch or how they really didn’t take a nap during nap time because they were tricking their kindergarten teacher. (actual conversation with me and my youngest son, Jordan). When Jordan was in elementary school, all I had to ask was “what did you do today?” and then the flood gate would open.

With Taylor, it was a silent ride home unless he was “watching” a video in his head and speaking the dialogue out loud from his video. Listening to him repeat the script to his Winnie the Pooh video made me think...Taylor has all the words, how can I get him to tell me about his day?
Taylor, loved people! He loved attention and playing silly games. I had faith he would talk to us one day.
I talked to his teachers first to find out what his schedule was throughout the day. This was HUGE in helping me create a list of questions I could ask Taylor each day. I couldn’t ask Taylor such a broad question as “What did you do today?” or “How was your day?”. I had to be very specific with him if I wanted him to be engaged.

At first, getting Taylor to answer our questions was like pulling teeth. Some days he wouldn't answer a single one but with my insistence and persistence I think he realized what I wanted. He began to engage more by answering a few questions and soon began to look forward to our questions...most days.

Here is an example of how our conversations may have gone then. You will see that some questions only required him to answer with one word. If I only received a one word response, I would expand on my questions to help him put more words together. Notice how some questions and answers lead to more information for me which helped me come up with new questions for Taylor regarding his day. I also learned that if I asked him two questions in row, I would only get the answer to the last question I asked him.

    1. Did you have a good day today, Taylor?
    2. Did you have fun with Mrs. Zager?
      " No."
    3. Why?
      ---no response
    4. You didn't have fun with Mrs. Zagar? You always have fun with Mrs. Zagar! What was wrong? Was Mrs. Zagar gone today?
      "She was gone."
    5. Oh no! Where was Mrs. Zager? Was she sick today or did she work in the office?
      "She is sick."
    6. What did you do in speech today with Mrs. Liddell?
      "Winnie the Pooh."
    7. "You talked about Winnie the Pooh with Mrs. Liddell?
    8. What did you have for lunch?
      "Pizza and milk."
    9. What was your favorite part?
    10. What book did you read today in class? Did you like it?
    11. Did you get to go outside and play on the playground?
    12. Are you sad because you didn't get to see Mrs. Zagar?
This is just a little example.This is also about the amount of questions I could ask him before he was done with me. Taylor did not answer "why" questions for a very long time, years in fact. The truth I discovered is that all of us have a tendency to ask "why?" immediately without thinking of another possible way to phrase the question. I had to learn to stop using "why". It was hard and I had to really think about it but it made a big difference in conversations with Taylor. In fact, I had to learn how to ask most my questions in a new way to keep the conversation going with Taylor.

Sometimes, if I felt I knew the answer, I would give him a choice of how to answer as shown in question number 5 otherwise I may just receive a very generic answer.

In our experience as a family, at the table during dinner time was the best time to sit and have these conversations with Taylor. He was stationary and not really distracted. No TV or radio during dinner time. I promise, he got plenty of screen time throughout the day that this didn't cause too much distress. Again remember, when he was little, there were no smart phones so all we had was the TV in the living room, so bringing videos to the dinner table wasn't even an option.  Asking his younger brothers the same questions we were asking Taylor also made this better for him instead of it feeling like more speech therapy.

All, that being said, you do what works best for you and your child. I would suggest not disrupting their routine too much at first. Start by asking only a couple of questions each night and then add to your list. Pretty soon the dinner conversation BECOMES THE ROUTINE and it is wonderful!

We also did this Q&A when we went to movies or to the zoo or other fun places. On the ride home, my husband and I would ask the boys, "what was your favorite part?" and they would each answer. As Taylor got better at answering, the questions grew more complex. Since movies were the main thing Taylor loved, the questions were "what part made you laugh the most?" or "what part made you sad?". My other two boys loved these conversations also. They are now twenty, eighteen and fourteen years old and we still do this question session after every movie we see. My fourteen year old told me the other day that he thought of this as a tradition we have. 

I guess it is. It just became a part of what we do as a family and it was the beginning of Taylor's ability to have conversations. We are still working on conversation skills. This will be a life-long progression for Taylor. As with most people with Autism, he has a hard time listening to others when they converse with him. He hears them but he has a hard time listening because in his head he is already practicing what he is going to say to them. This means that a lot of the time when he responds, it may be to a question the person asked at the beginning or even 5 minutes ago instead of what they just said.

Taylor loves to talk TO people but still struggles talking WITH people. He wants to talk about what HE wants to talk about. He is aware that he needs to listen more to others and not always talk about his favorite things, but it is a conscious effort for him. For this reason, his conversations with others are not very long winded because he really has to focus and concentrate on what they are saying, and that gets old pretty quick. In fact, it honestly wears him out.

It is not uncommon for Taylor to ask "Are we done talking now?" or if someone is long winded telling him something, he might even butt in and ask "can I talk now?".

"Can I talk, now?"

Oh, I how I prayed to eventually hear him say those words. It took a long time. Hours. Weeks. Months. Years of practice, tears, frustration, laughter, patience and some help from all those around us.

It was all worth it. It is worth it. It will be worth it.

He's not done yet.

Saturday, December 9, 2017

My Own Polar Express-Part 2: Does Seeing Always Mean Believing?

Do you have to see to believe? For most children with Autism, the answer is more often than not, "Yes."
Continuing from my previous post...
Just like the Hero Boy in the Polar Express, we all have to grow up one day. My life went on. I grew up, went to college, married my childhood sweetheart and started a family, but I never forgot that magical Christmas Eve. I shared this story with my husband many times through the years and we both agreed that when we had children, Santa would visit them as well.

The dilemma for us would first come with our families. There were some in our family who did not have Santa visit their home. I understood why and I had no problems with it. I’m a preacher’s kid. I get it. I know the true story of Christmas and there was never a question that my children would know it as well, BUT I wanted my children to have Santa, too. Santa was that important to me.

When Taylor was first diagnosed with autism, we came across our second dilemma. One of the things that his therapists worked on was helping Taylor learn how to use his imagination. If you have a child on the spectrum, then you know. Everything is literal. Imagination is hard. During his many therapy sessions, his speech therapist worked on this with him. One of the many ways was trying to help Taylor imagine an object was something else. My husband and I would do this with him as well whenever the opportunity arose.

For example, I would get a banana and pretend to use it as a telephone. Yeah, most of the time Taylor would just stare at me and then want to eat the banana.

Imagination and pretending are a part of childhood and something that most parents just take as a given. Pretend play didn't happen often at our house and proved to be very difficult for Taylor. He saw things as they were and that was that. This brought up a HUGE concern for me, something that I never thought would be an issue to teach my child. Like I mentioned before, I am a preacher’s kid and I just assumed my children would come out of the womb knowing who Jesus was...who God was!

Let me ask you something. Can you think of anything more abstract? How was I going to teach Taylor about Christ’s love? Even bigger than that, how was I going to ever be able to teach Taylor about God? Taylor can’t see Him, can’t touch Him, can’t go visit Him. Taylor can’t even call Him on the phone and hear His voice.  HOW was I going to do this? I had faith though and I prayed that God would show me.

I put it in His hands. I would know how to do this when the moment was right.

Taylor was just 9 months old when we took him to visit Santa for the first time and began a tradition that would last for years to come. He was so adorable! He actually laughed when Santa put him on his knee. No tears from Taylor, he was never scared of Santa.

I believe it was the Christmas when Taylor was three years old that God showed me the "right moment". It was like an epiphany...Santa could teach Taylor how to believe!

Hang with me here.

With Santa, here was someone Taylor could see. Someone he could touch, someone he could visit. He could even call him on the phone and hear his voice. No imagination there BUT here is where it came in.

What did Santa do the rest of the year? What was he doing during summer break? How did he get around? Did he always fly a sleigh? Where did he go on vacation? Did he walk his deer? What did the elves look like? What about his shop? How did the reindeer fly? Did they go into outer space?

And so Taylor began to IMAGINE. He was non verbal as a toddler. I think his total of words by the time he was the age of three was holding at around 40 words but he would draw pictures! Oh my goodness! What a beautiful world I discovered through Taylor's drawings.

No, this wasn’t turning a banana into a telephone, it was bigger than that. He was beginning to imagine and draw things that he never saw in real life. He was using his IMAGINATION!

The years went by and Taylor's creativity grew. We were still not on the communication level to have a dialog about God but I felt in my heart that Taylor knew Him. Then one day on the way home from church we heard from the back seat, “Jesus lives in my heart.”

My husband and I, together. - “Yes, Taylor! Yes, He does!”

Taylor meant it. He wasn’t just repeating something back at us. To tell you the truth, I think Taylor understood what that meant better than any adult I have ever met.

In all honesty, Taylor taught ME who God is. He is still teaching me.

My boys are older now and Santa has moved on to share his magic with other boys and girls but my boys still believe.

Santa gave Taylor an incredible gift, not me, not my husband...Santa! The gift of imagination. That one thing changed Taylor's world. It helped him through some really tough times as well. A perfect example was how it helped him cope with the death of two of his grandmothers. Santa taught Taylor how to imagine which allowed Taylor to envision Heaven and what his MeeMaw and MadaWane are doing even now as they sit up in Heaven.

Please understand, this is not a post begging you come to Christ or push my beliefs on you. It is about my family's life. It is about how my husband and I found a way to teach our autistic son about the love of God, who Jesus was, what He did for us and how the magic of Christmas lives in all of us. I am not saying this is the only way or the right way, but it was the right way for us.

I do hope this post blesses you all and remember, Santa is real!

You just have to believe.

Friday, December 8, 2017

My Own Polar Express-Part 1: Finding the Magic Again.

I grew up with Santa. I LOVED Santa and I remember as little girl sitting in my bed on Christmas Eve anticipating his visit. We moved often when I was growing up, so Santa had to find us in a different place each year. Every year I wondered, “Will he find my sister and me again?” “Did he get the letter I sent?”

He always found us although I am still not sure about my letters.

I remember on each Christmas Eve lying awake in bed thinking of ways he could get inside our house even though we didn’t have a chimney. I always thought of a way. I had a very vivid imagination.

In the fourth grade, I became very curious and skeptical. I wanted to know more about Santa, so I looked him up in the encyclopedia.


POOF! The Santa magic was lost...much to my mom’s dismay as I insisted on discussing the matter of my discovery in a car with my seven-year old sister wailing in the back seat. Yes, I destroyed the Santa magic that year for my sister as well.

That was a sad Christmas for me (and my sister, oops!). I felt a little betrayed, although I think I had known the truth for a while. Why did my parents lie to me? Still, I missed the magic and the anticipation of Christmas Eve. I was torn. I think I was more upset that it wasn’t real...or was it?
One year all of that changed and I learned who Santa really was.

I was 13 years old. Practically a grown up in my eyes but that was the year I discovered that Santa was really real.

At the time my sister and I lived with my mom, who was single, working and in school...i.e. Poor.
We were poor.

My mother had bought my sister and me three presents each for Christmas that year. My mom was so excited because this was the first year she had been able to get us what she really wanted to. Since our house was small and there weren’t many places to hide gifts, she went ahead and wrapped them and placed them under the tree many days before Christmas.

I would walk by those presents every day and just thought I would go crazy waiting for Christmas Day! If  you're wondering, I was the kid that loved surprises, so no, I never peeked.
Then it happened.

We came home one night to find our house had been broken into.

You guessed it, all our presents were gone.

I don’t remember crying, although I am sure I did, but I do remember seeing my mom cry. She cried hard. That had been all that she could buy us that year and it was gone.

I remember my best friends family immediately wanted to help. My grandparents as well.  As appreciative as my mom was, it was still a hard time for us.
The presents were replaced by loving friends and family. We were all so grateful and I learned first hand how giving to others in need can make a huge difference in someone’s life.
But my lesson wasn’t over. On Christmas Eve,  as we were sitting around watching a Christmas special, we heard knocking on the door.

This wasn’t the best neighborhood that we lived in so, to say it startled us would be putting it gently. Especially in light of the circumstances.

All three of us got up to see who was at the door and received the greatest surprise!

There standing on the front porch was Santa and two of his helpers! He had with him a huge bag of gifts! I tried to see who these people REALLY were, but I had never seen them before.

It was Santa and his helpers! THAT is what I knew and still to this day that is all I know. I don’t have any idea what the gifts they brought us were. Isn’t it funny how that stuff goes away? What I do remember is the moment we opened the door on Christmas Eve to see Santa and his helpers standing on our front porch, that feeling of joy and the love we felt from those three strangers standing at our door.

That was the year I rediscovered the magic of Santa and knew without a doubt that when I had children one day, they would experience it as well.

Santa was real! His magic was real! be continued.

Thursday, October 26, 2017

He Makes Us Better

What an emotional week it has been!

I have a Freshman and a Senior this year, both of which are in the Marching Band. Over this marching season, I have watched these two boys grow closer and closer, their bond grow stronger with each other.

What does any of this have to do with Autism?

Hang with me just a minute.

It all came to an extremely emotional moment the other night. It was Senior Night and the band was playing one last song, “Amazing Grace”, to the Seniors at the end of their last home game of the season.

Tears were everywhere! So many kids were crying. We have 47 Seniors this year...that’s a lot of friends leaving.

I was expecting to see Brendan, my Senior, emotional. What I was not expecting was to see my youngest son, Jordan, falling to pieces.

I looked across the field to see him standing there crying so hard. Brendan made his way over to him and they stood in a bear hug for several minutes while Jordan cried on his older brother's shoulder. The love between them was moving to see. I'm pretty sure my heart exploded.

For this momma here, it was the answer to another prayer from long, long ago. A prayer that my children would be the best of friends. For something I never really had.

I have a younger sister and a younger half-brother. Growing up, it was just the three of us but we didn’t have that bond that I know some siblings have. It wasn’t horrible, I mean we had fun, but we were not buddies. My younger brother is 6 years younger than me so we just didn’t have much in common as kids. For the most part, I looked after him and entertained him and his job was to make me crazy.  My sister and I just clashed. We constantly fought...even as adults.

This is what I thought was normal. Siblings argue, tell on each other, fight, steal from each other and make the others life miserable, topped off with a few laughs and fun times in between. That was my normal.

When my youngest son was born, I was ready. THREE BOYS! My husband and I joked that our peaceful quiet days at home were gonna be on hold for the next 18 years or so.

We wondered what it would be like to raise three boys full of energy and spirit. Would they get along like my husband and his brother do? Would they just hate each other or would they fall somewhere in between?

I wanted them to have a good relationship with each other and I prayed that would happen. I was concerned, though. They already had a few more challenges facing them than most families do. Their older brother has autism. Would this make their life harder and add more stress?

Just add this to another thing that I worried about.

I didn’t know what life would be like for these three boys. Turns out, I didn’t have anything to worry about at all.

This is what happened.

My boys learned acceptance. My boys learned that everyone is special. They learned to stand up for their friends and loved ones. They learned it was okay to be different.

They have never viewed Taylor’s autism as a disability, he is just Taylor. He is their big brother.

Even at a young age, they understood what made Taylor tick. What would make him laugh, what would upset him, what kept him calm and what got on his nerves.

Don’t misunderstand. They all three still pester the crap out of each other, but they also know when to stop. Other than that horrible biting stage when Taylor and Brendan were toddlers, they have never physically hurt each other intentionally. I don’t even think they have intentionally hurt each other's feelings, either. Now I KNOW this is not normal, at least it wasn't for me and my siblings growing up.

Brendan and Jordan never had those “brother fights” I had prepared myself for. Certainly nothing like the fights my sister and I had. I remember one time when I was fourteen, I found out my sister had taken an outfit of mine without asking and then me trying to drag her up the stairs in a headlock demanding my clothes back. (I’m not the only one, right?)

This kind of thing has never happened between my boys. I am so happy that this is true but I am not really sure that is the norm.

I know my kids are not perfect, but to me they are perfect brothers. I can’t take credit for it, though. I didn’t make them this way.

Taylor did. All with his brothers completely unaware.

Taylor changed the whole dynamic of our family. As little boys, Brendan and Jordan would never fight it out because of how it would be for Taylor. They knew that it could cause a meltdown from Taylor and they never wanted to upset him that way. They wanted him to laugh and be silly. They wanted to include him and they did.

Taylor is a funny kid and his younger brothers wanted to be with him all the time when they were little. It wouldn't be until much later that they would understand why Taylor didn't engage with them as much as they wanted him to.

Taylor has taught them how to see the world through someone else's eyes. They often think of situations from the perspective of  “How would Taylor feel?” and as a result are much better at thinking out their actions first and how it may affect other people, not always, but more times than not.

They have learned patience. You tend to learn patience unwittingly when you have a brother that loves to repeat all things such as watching the same movies over and over, telling the same jokes again and again or asking the same questions when you know he knows the answer. You get the idea.

These two boys have sacrificed a lot for Taylor. If they ever needed an excuse to feel left out or resentful of their brother taking time away from them, they had it. The early part of their young lives was filled with all of us trying to get Taylor to talk and engage with us. Yet, they never complained once in all the years about being drug along to all of Taylor's speech therapies, social therapies, horse riding therapy and that entire summer with the hyperbaric chamber.

There were so many nights that I had to spend alone with Taylor locked in my room so he could focus on his homework without any distractions. Not once did they complain that I wasn’t spending that time with them. They understood that this is what Taylor needed.

Pretty soon, Brendan offered to help Taylor with his homework and he WANTED to help him.

Jordan would go walking with Taylor when he walked the dog so he knew Taylor was okay and I wouldn’t worry.
Taylor is a wandering ninja. He has a terrific tendency to be standing next to you and the next second be gone. "Poof!" I cannot count the number of panic attacks I have had with that kid because of this vanishing trick of his. Anyone who has spent more than 5 minutes with him has experienced this with him. He is almost 21 years old and he STILL does this!! Whenever we would go out to places, it was unspoken between Brendan and Jordan to keep an eye on Taylor. For example, when I would pay for the groceries. If I let go of his hand for a second, his brothers would move in. Taylor never ran off, he knew people would notice that. No, he GHOSTED and many times it was his brothers that would grab him before he could do his disappearing act. Much to Taylor's dismay they still do it. Old habits, you know?

No one asked them to do these things. They just did it. I know that this sounds like a lot of mom bragging...and it is.

This blog is dedicated to telling the story of life with Taylor. My goal is to give hope and maybe inspire another mom or dad out there who has a child on the spectrum. Brendan and Jordan have even given me suggestions on things to write about. The thing is, they are just as important and intricate to the story of Taylor. They are his support system. They are his advocates and I feel it is important to express how special they both are.

This post is for them.

That night at Senior night, I saw the result of two boys that had something more in common than just being the brothers of Taylor. That hug wasn’t forced. They didn't know their dad and I were watching the moment. It was real and raw. The evidence of their love for each other. Did I ever hug my brother or sister this way? Sadly, I am not so sure, but seeing this moment manifest in front of me was almost too much for me to take in! My prayer answered. Thank you, God.

Some people may look at our life and feel bad for us. Actually, I know some people do, and to you I say, “Don’t”.

I can’t imagine our life any other way. God knew what he was doing when he blessed us with Taylor.

Taylor taught us compassion.

Taylor taught us acceptance.

Taylor makes us laugh.

Taylor makes us think outside of the box.

Taylor makes us better. ...and Brendan and Jordan make Taylor better.

Thursday, September 14, 2017

Does He Know?

My son is a bright young man. He is funny with a dry sense of humor. He has artistic talent and he is a good brother. He is twenty years old with a great job working in the ER at the local hospital.

He also has autism.

Does he know?

I ask myself this question from time to time. Does Taylor know he has autism? He knows he is different and that there are things he may never get to experience, like have a group of friends, driving a car at 16 or, most recently, moving away to college. Does he understand why?

When he was eight years-old, something remarkable happened between the two of us. At the time, Taylor was still struggling to communicate with his words. He had such a hard time articulating his thoughts and feelings. If something upset him, he was unable to tell us why or even what it was.

This was one of those first.

It was a lazy summer morning and his younger two brothers, Brendan and Jordan, had been watching the Cartoon Network. Taylor had no interest in watching with them so he stayed in his room drawing with his computer.

As the morning went on, Taylor would come out of his room and just yell at his brothers and start crying. I had no idea what was going on and it seemed very sporadic. His brothers weren’t bothering him but something clearly was. I would turn down the TV, sit with him for a little bit and calm him down. As it continued to happened, he started to cry and it finally progressed into a full blown meltdown.

I have mentioned before that being a parent of a child with autism feels like being part detective. This was one of those instances. I was struggling here. What in the world was upsetting him?

Then I began to see the pattern.

My other two boys were watching “Fairly Odd Parents” and it seemed like every time the dad came on and began to talk, it would set Taylor off. I finally realized that it was the dad’s voice that was upsetting him. I had no idea why that would be, but it was definitely the culprit. We changed the cartoon to something else and Taylor instantly calmed.

Crisis averted, I felt pretty great that I had figured out the problem. Go me!

About 20 minutes later, Taylor walked into my bedroom, looked at me and said “I need a new brain.”

For a moment, I just stood there looking at him. My child had just rendered me speechless. First, in the most perfect sentence, he spoke directly to me and told me what he was thinking. After the initial shock of that little miracle, the impact of the sentence struck me numb.

This was the moment that I knew Taylor understood he was different. What made my heart break and threatened my tears to flow, was that it was obvious he didn’t want to be different...he wanted a “new brain”.

Coincidentally, the week before I had picked up an issue of “TIME” magazine in which they had published an article about the differences between the brains of autistic individuals and typical individuals, complete with CAT scans. I still had this magazine somewhere and at that moment I knew that Taylor needed to see it.

I told him that I had something to show him and so I dug out the magazine and we sat down together in our overstuffed chair. He seemed as eager as if I was going to read him his favorite Dr. Suess book.

Opening the magazine, I said “Taylor, you do not need a new brain. Your brain is just different and it works in an amazing way.”

Taylor replied in his sweet little voice, “Well, let’s see.” and began looking at the pages.

Once again, I was speechless. We were having a conversation! I had to hide my tears or I knew the magical moment would be gone.

So we began to read the article. I don’t know how much of what I read to him he really understood but he was completely enthralled with the CAT scans images.The CAT scans showed what parts of the brain lit up in response to different stimulants, such as seeing a familiar face or seeing something scary. I simplified it very much and I explained it to him, saying “This brain is what your brothers brain looks like and this one over here is what yours looks like. See the colors? The three of you have all those colors, but yours are just in different places than your brothers.”

Completely satisfied, he closed the magazine, hopped up and went back to his room. The moment was over and he was suddenly in a great mood again.

Did we just have a break through? I sat there for a long time filled with a whole range of emotions and a whole lot of hope.

Needless to say, Taylor was still Taylor and he continued to progress at the same rate he had been, but for that 20 minutes as we looked at that magazine together, I knew that Taylor understood a lot more than I realized.

Did he understand it was autism that made him different? Did he know he had autism?

As he grew older, he would still have those moments. Moments where he understood he wasn’t the “same” as his peers.

It was hard watching him realize that he didn’t have the friendships his brothers had as he watched them walk out the door to go to sleepovers or parties.

I am blessed, my younger two boys have never treated Taylor as anything other than their big brother. I don’t think they realize how special they are or how thoughtful. A great example is how they handled the sleepovers. Most of the time, they would invite their friends over here, and while Taylor may not have “hung out” with them while they were here, he still felt like he was a part of them. He felt included in the way that only Taylor can feel included.

Did Taylor understand it was his autism that made it harder for him to make friends? Did he know?

When Taylor graduated from high school, we went through this once again. He watched his friends move off to college and it was so apparent he wanted to do that as well. Not school, mind you, Taylor was done with that! School was hard for him and he was happy to graduate. No, it was starting the next journey that he realized he was missing out on.

His friend since they were born (as Taylor told me one day), Rebecca, had been accepted to Auburn and Taylor came home one day and informed me that he and Rebecca were getting an apartment together and would live in Auburn. (Rebecca was pretty surprised to hear this too, but she thought it was really sweet)

I said, “Taylor, you said you didn’t want to go to college.”

His reply, “You don’t have to go to college to live in Auburn.”

Touché my son!

Did Taylor really believe he was getting an apartment with his friend in Auburn? I don’t think so. I think he was just enjoying his dream out loud. A dream to be normal and to be able to do the same things as his friends.

Did he understand it was because he has autism that this opportunity will most likely never happen for him? Did he know?

Recently, Taylor has been very concerned that we are already close to the end of this year. He has said many times, “I can’t believe it’s almost September!” or “Can you believe that 2018 is almost here?!”

My husband and I began to realize that this wasn’t just your, “wow, time flies” kind of comment. Taylor wasn't just trying to make conversation. That's not really Taylor. No, Taylor was really becoming stressed about the year 2018.


Last year, I know that right before he turned twenty, he became really stressed. He told me he wasn’t ready to be twenty. One day he asked me if he would go to heaven when he died. He was already thinking about how he would be old and die one day.

“Holy crap!” I thought. He was really, really concerned about turning twenty!

My husband and I had a suspicion of what may be on his mind and sat him down one day. We asked him if he was nervous about turning twenty and he vigorously nodded his head, yes.

“I have butterflies,” he told us.

I asked, “Are you nervous because you are going to be a grown up?”

“Yes,” he replied.

My husband said, “Taylor, you know you can live with me and mom for as long as you want to. You don’t have to move away. You can be a grown up and still live with us, okay?”

Suddenly the tension seemed to melt from him and he was okay again.

This time was a lot like that.

The thing is we had already told Taylor he could always live with us, but I thought, maybe I need to remind him. I would also remind him of the fun things we were going to do in 2018 as well. Let him know 2018 was something to look forward to.

So, as I was driving him to work the next morning, I broached the subject. I reminded him he never had to move away and he told me he already knew that.


Then I asked him, “Are you nervous about it being 2018?”

“Yes,” he said, “I have butterflies.”

So I told him, “We are going to do fun things in 2018, right? Tell me what we are going to do.”

He said, “We are going on a Disney Cruise.”

I said, “That’s right!”

Then he said, “And then Brendan is going to move away.”



What an idiot I am. How could I have not thought about that?

His brother has been looking at colleges for the past 6 months and in just a few more months will be graduating from high school and going off to college.

When I moved away for college, my sister was all “Bye Felicia!” so maybe that is why I never thought about how Brendan moving away would affect his brothers, especially Taylor. That doesn’t mean I shouldn’t have thought about it.

There went my “Mom of the Year” award.

This is going to be really hard for Taylor and it is going to shake his world. Brendan moving away will mean a lot of things. First and foremost will be that Taylor’s order, routine and normality will shift around. Big time!

It will also be another reminder to Taylor that once again, he is being left behind.That once again he is different and will not be able to have that same experience.

It breaks my heart.

Does he understand it is because of his autism? Does he know? Does he understand?

I think the real question is, does it really matter? It doesn’t change how Taylor feels.

I know that Taylor will adjust as he always does. It will take some time, but he will overcome it. He will continue to surpass all the expectations even as he takes the knocks and blows that life has and will deal him.

In this way, Taylor is just like everyone else.

He may not face the same stresses and challenges we all have in life, but he has them.

He has all the colors, just in different places and he will succeed in all those different places.

I know he will.