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?
   "Yes."
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?
   "yes"
8. What did you have for lunch?
   "Pizza and milk."
9. What was your favorite part?
   "computer"
10. What book did you read today in class? Did you like it?
    "yes"
11. Did you get to go outside and play on the playground?
    "yes"
12. Are you sad because you didn't get to see Mrs. Zagar?
    "yes"

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.

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.

Transitioning - Elementary School to Intermediate School.

When Taylor finished the third grade, I remember feeling so proud of him and so scared for him at the same time. Since he started in the Eclipse class when he was only three years old, he had been at the school for five and half years. That is a really long time for an eight year old.

I knew the teachers and staff there and I knew they loved him and wanted to best for him. We were extremely blessed when we moved to our little town because it was the absolute best place for Taylor.

Now he was going into a new school, though. He would be in a completely new environment with teachers that I didn't know and that didn’t know him. There would be a whole group of kids coming from other schools who hadn't been growing up with Taylor since they were four and five years old. Would he be bullied? Would the teachers understand his quirks? Would Taylor be okay?

I didn't realize it until then but I was spoiled. After Taylor’s kindergarten year, I never worried as much about how his teachers or peers would treat him. I never worried if he would be ignored or dismissed. I knew everyone loved him there, but now? Now, I was scared.

A friend of mine, who also has a son on the spectrum, gave me some advice and it is the best advice I think I could have had.

It was a very simple thing but nerve wracking for me, none the less.

She suggested that I call a meeting and meet with his upcoming 4th grade teachers (he would have two), his resource teacher, his aid, his speech therapist, his principle...basically, anyone that would be working with Taylor at all. I wasn’t sure they would meet with me. As far as they knew I was just “another helicopter mom”, and I knew absolutely no one at that school. The last thing I wanted to do was go in there with all these demands and make these people dislike my child before he had even started school, but my friend said she would go with me to the meeting as moral support and that eased my mind.

Looking back on it, it is so strange how worried I was about that meeting. It would be this meeting that started my yearly teachers meeting before EVERY school year after that with Taylor’s teachers.

My advice to you?

DO THIS! There is no way the teachers can know everything about your child.
Make a list of things you think are the most important things for that teacher to know and understand about your child.

What cues are helpful?
What things are difficult?
What can cause a meltdown?
What can CALM a meltdown?
What makes them happy?
What cause them stress?

Your list could go on.

Let the teachers know that you are their best ally and that you need to know what is going on at school so that you can help them help your child.

Taylor had a notebook that he brought home every day with notes to me from his teacher. In fourth grade it was absolutely necessary because Taylor still wasn’t able to tell me about homework instructions or about field trips or money he needed for whatever. It also allowed me to let his teachers know if his day was starting off bad because his backpack strap broke or it was thundering outside.

These notes helped give a little more insight to the teachers about Taylor and it helped me to put my trust in his teachers.

It is such a small thing. You're not asking for an essay from the teachers and they aren't expecting one from you. I wouldn't advise you to write one either. The teachers time is just as valuable as yours and they have other students as well. Short and to point is enough and goes a long ways.

Will there still be bad days and speed bumps? Absolutely, but hopefully these little things will help make their school year better, for them and for you.

Speech Delay or Autism? pt 2 of 3

Like most children with autism, Taylor loved his videos (still does!). When I say “love” I mean he watched them on repeat over and over and over. He had them memorized.

Okay, who are we joking? I even had them all memorized.

I heard all the advice and read all the articles about how I shouldn’t let my child watch TV too much. That my TV was not a babysitter. That Moms should spend more playtime with their child. That he needed to go outside and play, blah, blah, blah.

I also learned that you have to do what works for you and your child. Taylor was learning to talk by watching those videos on repeat. He was hearing the phrases over and over again and understanding what they meant.

How do you explain to someone who doesn’t have a child with autism that those videos brought him comfort? They kept him calm. They gave him something that made sense. They gave Taylor something he could memorize. They gave him his words. They gave Taylor his sentences.

I think Taylor had just turned four years old before I finally heard the word “mommy”, only it wasn’t “mommy” it was “mother’.

I was outside in my garage while my mother-in-law was sitting with Taylor inside. I heard his little voice and I thought…"No! Did I just hear what I thought I did?”

I listened a bit more closely.

“Mother? Mother? Where are you mother?”

Oh my God! I dropped everything and ran into the house. My mother-in-law was standing there with this look of surprise on her face and tears in her eyes, smiling so big at me.

“Did you hear him?! He’s calling you!”, she laughed. She was absolutely giddy!

Then it hit me...hard. No, he wasn’t calling me. That was from “Bambi” when Bambi is looking for his mother.

I had waited so long to hear him call my name and I had wanted this to be real.

Damn, echolalia. I was crushed.

I explained this her but she shook her head at me. “No, Dawn. He was LOOKING for you!”

About that time, Taylor walked back into the kitchen, saw me and ran to me saying “Oh! There you are. Can I have more…?”   ("Oh! There you are." was from 'Bear in the Big Blue House')

I don’t remember what he wanted because I realized that he HAD been calling me. He had learned that phrase from “Bambi”, yes. In fact, he actually said it EXACTLY like Bambi did, same voice inflections and everything, but he was using it like he was supposed to. He was looking for me and he plugged in the phrase that went with his need.

It was a moment I had waited four long years for. My child had called out to me. He said my name.

I was encouraged and I wanted more. I wanted conversations. I wanted chit chat. I wanted the constant "why" questions all toddlers ask.

I wanted the barrage of  "Mommy. Mommy. Mommy. Mommy. Momma. Momma. Mommy!!"

I wanted to be able to tell my child "We need to play the quiet game. There is just too much talking!"

I wanted normal.

I believed we could get him to talk more, we just needed to figure out how.

Frustrated, I asked his speech therapist about it. Why could he said the words “I”, “outside”, “want” and “go”, but could not put these words together in a sentence to say “I want to go outside?”

Why could he recite an entire video to us, but was unable to create on his own the simplest sentences?

This is what raised the red flag to his speech therapist. It was a few weeks after this that we would hear the word “Autism” for the first time and we fully began to grasp the journey that we had in front of us. This wasn't just a speech issue anymore. This was about far more than teaching my child to say and form words.

This was big. This was scary.

I had to process this information and I am not going to lie, it took me a couple of days.

I didn't want to be around anyone. I didn't want pity for us, for Taylor. I went into a dark place those first couple of days. Angry at God, angry at myself, angry at my husband, angry at other parents with their 'normal' kids.

I had to get a grip. I woke up that second day and shook it off. My child needed me. My anger was non-productive. I had to figure out how to approach this sharp turn life just gave us and my first step was trying to understand what life for Taylor must be like.

I paid closer attention to him. Why was he lining up his cars through the house? Why did he hold dry leaves up to his ears as he crushed them, laughing uncontrollably as they crumbled in his hands?

I put myself in his world and he began to teach me.

The way I began to understand Taylor and his language abilities helped me help him. My father-in-law asked me the same question I had asked the speech therapist that day. I felt like I finally understood and explained it to him like this.

Taylor's brain is like an enormous library but instead of books, it is individual words. It is so full of all these wonderful, fabulous words. So many words that it becomes difficult to decipher which words are more important, which words were happy, which words were sad.

One of the ways Taylor began to understand the meanings of the words was to 'color' them. Angry words were in the red section of the library. Sad words were in the blue section, calm words were in the green section. You get the idea.

Taylor understood the words. He understood language. The words were going into the library BUT the library exit doors were closed and locked.

His words couldn't get out.

My job was to open that door. The words are there, waiting to get out. Some days those words are beating on that door and some days they are waiting patiently, but every day they want to get out.

When that door finally opens I knew Taylor's world will open, too. I was determined to see that day happen.

Your Journey is Valid

April is Autism Awareness month and with that comes all the posts and articles about what living with Autism really means.

There are some very happy stories. Those always make the news because they make people feel good. They give people the “happy tears”.

Not all the articles are happy though because for most families, autism is hard.

I have read every single article that has come across my path. I want to be connected to these other parents. I want them to know that they are not alone. I want them to know that people care, so I share all these articles and videos and do what I can to raise real awareness for autism.

I want to be aware.

You would think that since I have a son with autism that would mean that I am aware but every parent’s story is different and every child is unique.

I also have a confession to make.

For every article I read about a child with severe autism, I have felt guilt.

I mean, who am I to complain or feel like our life has been hard?

One article in particular really got to me. The author writes,

“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.”

This is a fact. This is truth and people should know about this side of autism.

I went on to share this article on Facebook and shortly after, a parent shared a comment on my post that said they wanted to scream every time they saw one of those “feel good” posts about autism because, "there is nothing ‘cute’ about my son’s autism."

I felt guilty.

Taylor does not have severe autism.

He doesn’t punch himself in the face or beat his head on the wall.

He doesn’t crawl around rubbing his head on the floor…anymore.

He is verbal…now.

He doesn’t kick, bite or hit himself or other people…anymore.

He doesn't lay down in the middle of a public place and have a full blow tantrum while people stare...anymore.

Suddenly, I felt guilty for writing. For sharing our story. Who am I to write about our autism when other parents have it so much harder than we do?

I couldn't bring myself to write for several days because what could I possibly share that would help parents dealing with so much more than me? I had nothing to offer.

This morning, as I sat staring at my laptop I still didn't know what to write. Then I reminded myself the “why” of it. Writing is my outlet, it is my stress reliever. I write from my heart and get it all out. It is our story.

I realized this. Just because our journey is not as hard as the person next to us does not make our journey invalid. It is just different.

The same goes for you. Your child may not be as severe as someone else's child but I understand that does not mean your life is roses and rainbows.

I know that you cry yourself to sleep some nights. I know you have days that are very bad.

I know you have your own fears for your child’s safety. Will people take advantage of them because they realize your son doesn’t understand that evil exist? Will they hurt him? Your son is “high functioning” but can he really be on his own, ever?

I know you have mourned the life you imagined for your child when suddenly on beautiful spring afternoon, watching your child spin and spin and spin in the swing, reality set in. It hits you hard and without warning. You suddenly understand their future will be something completely different than you had imagined for them because your child has autism. You cry while sitting on that park bench, hoping your child doesn’t see.

You have mourned the friendships they cannot make. The sleepovers they never had. The dates they never went on. The best friend they never had.

You also have those moments when you are struck by an immobilizing fear because you know your child will out-live you and then who will take care of them when you are gone?

I remember years ago, I had become friends with a lady who son had Asperger's. I met her son and was struck by how articulate he was. He could play sports with the other kids. He didn't need to have an assistant at school. He didn’t run off if his mom didn’t have his hand in a death grip. He seemed so functional that if she hadn’t told me, I don’t think I would have known right away that he had Asperger's. The way I saw it, he had it so much better than Taylor.

I was jealous. As awful as that is, I was. I prayed that Taylor's life could be as easy as his. How much better our lives would be!

Then one day I saw her in the grocery store. She had been crying. I noticed scratches all down her arms. I asked her what happened and she told me that her son had a meltdown during church. She and her husband had to take him out of the church and to the quiet room to get him calmed down. Her son was in 5th grade at the time and weighed almost as much as she did. He kicked, screamed, hit and scratched her and her husband. They had to sit on him to calm him down so he wouldn’t hurt them or himself.

She was embarrassed because it happened at church. She explained to me that she thought she knew what people were thinking. That her son was some spoiled kid that just needed to be disciplined. His autism wasn’t obvious and she felt that no one understood. In that moment, I'm sure she felt very isolated.

On that evening, she may have even looked at my life as being easier because with Taylor, everyone knew he had autism. It was more obvious and if he had a meltdown like that, people would be better understanding, right?

I hugged her neck. I didn't know what to say. I just didn’t know. She smiled at me and told me it was okay. This was her “normal” and that they would be fine. It was just a bad night.

I had held some kind of jealousy towards their life because all I saw were the happy moments and how “easy” everything was for them. I wanted that for us.

I didn’t know. I wasn’t aware.

Her son was higher functioning than Taylor, but it came with a different set of problems. Different obstacles to overcome but obstacles none the less.

I wondered how she did it and realized that she had said that very thing to me not too long before.

Autism is a spectrum.

Spectrum, by definition is “a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence:”

In other words, all of these individuals may have a related diagnosis and have tendencies that overlap with others individuals , but no two with autism are alike.

Never feel guilty for the accomplishments your child has made. Never feel guilty because your child overcame an obstacle. Be proud of your son or daughter! Rejoice and celebrate every little miracle.

Your voice is valid and so is your story. Don't be ashamed to share. Your words may be exactly what someone else needs to hear.

Do what you can to raise awareness and share all the facets of autism. Know that every voice is important. Only then will people truly understand the scope of autism and really be aware.

We are all valid.

Taekwondo and Autism: The Unsung Hero

It was during Taylor's third grade year that he finally found his words to really express himself. 

His sentence were still broken and not perfect, but he was finally able to articulate what was causing him happiness, curiosity and even more importantly, distress.

It was around this time that I decided to place him in karate. I had been talking to friend of mine who's son was taking Taekwondo and she spoke of how great the instructor was and that she really it thought would be really good for Taylor.

Well, I have to admit, I was very reluctant at first. I took Taekwondo when I was kid and I knew how it went. Those instructors are serious and do not take lightly to disrespect or kids that can’t pay attention. The instructors yell loudly, whether it is during a kick, a punch or just to get the kids to stand at attention. The students also yell so there was that, too. 

A classroom of people yelling? This was my biggest concern.

Don’t get me wrong, I loved it when I took it, but was this for Taylor?

Gymnastic sure as hell didn’t work for him, so why not? Let’s try this out.

My first step, as you may have already guessed, was to sit down with the owner and instructor of the school, Mr. Smith. I sat in his office and explained to him that Taylor had high functioning autism and was just beginning to talk in full sentences. Basically, I was trying to say, without saying it, “Please be nice to him.”

I told Mr. Smith that Taylor may only last a month, and asked if he would allow him to do just a trial run before signing on for longer. When we tried gymnastics, Taylor only lasted for a total of 5 classes. UHG! I was really hoping for him to make it at least a month, maybe two?

I explained to Mr. Smith that I did not care if Taylor ever made it past a white belt because that wasn’t the reason I was signing him up. My goal for Taylor was to learn to listen to people. To take verbal instructions. I also believed Taekwondo would help him with his fine and gross motor skills as well.

At this point in Taylor’s life, he was still struggling with handling too many things at once. If you talked to him, he could not look at you. In fact, he had to walk around while you talked to him so he could fully process what you were saying. He simply could not do both at the same time. Cute when he was four, not so much when he was nine.

 “If you can teach that kid to stand still while someone is talking to him, it is worth every dime,” I told Mr. Smith.

He assured me that he could do that for Taylor and so began Taekwondo.

It wasn’t long before my middle son, Brendan, wanted to join Taylor on the karate floor. At first I was hesitant. Brendan was in ALL the sports and I wanted Taylor to have his “thing”, but I saw that Brendan watched and studied every class that his brother went to. I finally relented and let Brendan do the free class one night with Taylor. When Brendan proceeded to shout out all the tenets and already knew half the form, I couldn’t say no.

I think Brendan doing Taekwondo with Taylor was huge in keeping Taylor focused and involved. Taylor is the older brother and he wanted to show Brendan what he knew. Brendan also helped keep Taylor focused in class and out of trouble.

One particular day I noticed that Mr. Smith was really having a time trying to get Taylor to pay attention. “TAYLOR!, TAYLOR!” was all I heard during most of the class. As I watched, I noticed that Taylor kept looking upwards at the ceiling.

Mr. Smith yelled again, “TAYLOR!” and then Taylor snapped back to attention only to look upwards again a few short minutes later. He was clearly not paying attention. I looked up at the ceiling to try and determine what was so interesting and realized what the problem was.

White Noise.

After class, I pulled Mr. Smith aside and told him what I thought the problem was that day with Taylor. It was the overhead fluorescent lights.

The next class, Taylor was standing on the front row at the beginning of class, once again looking up at the ceiling.

This time, instead of trying to get his attention, Mr. Smith asked “Taylor, what is it? Do you have a question?”

Taylor answered, “What is that noise?”

Mr. Smith explained to him that the lights overhead made a buzzing sound.

Yes! And that was that. Taylor no longer looked up. The distraction was no longer a distraction. Taylor still heard it, but now he knew what it was. Just one question and Taylor’s world made sense again.

We adults learned a great lesson that day, too. What may seem like a behavior problem, could really be something else entirely and the solution may be as simple as observing the child. Really watch and see. Are they clearly ignoring you or could it be something else? 

Taylor and Brendan continued Taekwondo for the next three years and became black belts. While Taylor would never hurt a thing, the discipline he learned, the ability to “listen and do” simultaneously, far exceeded any medal he would win in a tournament. Taekwondo, for Taylor, went above and beyond all my expectations and I am forever grateful to Mr. Smith, Mrs. Duke and the other instructors that pushed Taylor and believed that he was capable.  

There are many stories I could tell of just this experience, some hilarious and some mortifying (for me mostly) but the bottom line is that Taekwondo would be one experience in a long line of life experiences that would help progress Taylor to where he is today.

"Happy Birthday" is the worst!

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

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

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

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

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

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

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

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

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

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

Think about it. 

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

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

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

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

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

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

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

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

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

It didn't work.

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

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

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

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

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

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

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

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.