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.

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 days...at 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.

Why?

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.

Okay.

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.”

Oh.

Oooohhhh!

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.

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.

One Day at a Time

Transitioning from having a child with  Autism to having an adult with Autism has been quite a journey for me.

From the time we received Taylor's official diagnosis when he was a toddler, my focus was on the task at hand. There was always a challenge in front of us and so we really never had time to think about “grown up Taylor”. We we're too busy focusing on “toddler Taylor” and “kindergarten Taylor” and “elementary school Taylor” and “Oh my God, what will happen when he goes to middle school Taylor”.

I think it was during his 10th grade year in high school that it began to sink in that Taylor was about to be in the real world. Somehow it snuck up on me and I wasn't ready.

Knowing what I know now, would I have been able to plan better for Taylor’s life as an adult?

That is something to think about and something that I HAVE thought about.

The answer is simple. I don't know.

Would I have been able to do anything else differently?

I admit that I wish I had known then what I know now. I may not have wasted that whole summer sitting in a hyperbaric chamber when he was twelve years old.  Maybe I  would not have changed his daycare when he was two years old or waited until he was five years old to teach him how to swim but overall, I don’t think I could have done anything much different because the knowledge wasn't out there. We were on our own and learning as we went.

It is very easy to sit here behind this keyboard and tell moms and dads to plan for the future of their child but in my opinion, that is much easier said than done. I mean, plan how?

The most important and obvious reason it is hard to plan their future is that every child with autism is completely different. Taylor has High Functioning Autism and that left a lot of question marks about his future. There were so many ways he could have developed and progressed (or not progressed). I soon realized that I couldn't look at how other people with the same diagnosis succeeded because, like I said before, they were all different.

Now, there are some things I could have been better prepared for I guess.  Things I never thought about when Taylor was little, like the fact that my husband and I would have to go to court to become his legal guardians as soon as he turned eighteen. When I learned we had to do this, I was caught way off guard, "I'm his mom! I don't need a court to tell me I can take care of him." Right?  Um, no. That's not how it works.  We also didn't think about Social Security for him as an adult until it was brought up in an I.E.P meeting when he was in high school. These were things that were never on our radar, things we didn't know we needed to explore. There was no one to tell us any of this so I am passing it on to you now. Now you know.

When Taylor was little, I'll admit I spent a lot of my thoughts on imagining Taylor as an adult with little to no signs of autism. I had read all the feel good stories about the autistic kids that grew up to become doctors, professors, artists and writers with spouses and happy children. I dreamed this would be my son's future, too.

At the same time, I also spent a lot of my time in those early years praying each day that nothing would happen to me or my husband because who would take care of Taylor if we were gone? I don't just mean young Taylor, I mean 40 year old Taylor. As much as I dreamed of him becoming the next Temple Grandin or Thomas Jefferson, I also worried about his future life. What if he never talked, interacted with others or was able to live independently? It was very scary to think about that and worrying about it did me absolutely no good.

So, as a mom with a two year old with autism, I focused on what I could do in that moment. First on the list, teach Taylor to talk.

Next was to teach Taylor eye contact. Then we taught Taylor how to express his feelings using his words. When Taylor finally started talking, I focused on the next hurdle, teaching Taylor how to socially interact. (We still work on that)

I had to take each step one at a time. That doesn't mean I always wanted to. It was easy to daydream about where Taylor would be in the next year. But I found that if I got too ahead of myself, daydreaming about what his life could be, I would go into that place I call the “What if” place. That “What if” place is a dangerous place for me. I would find expectations there only to come back to the real world and realize they would be unfulfilled. That was never fair to Taylor.

I needed to celebrate with him in the moment of the current goal he had achieved. I couldn't allow myself to think past the current goal, much less what we would be doing in 15 years.

We continued to focus on each moment, the task at hand that day, not the years in the future. I made sure I did everything I could to make success for Taylor a very real thing, not just something I sat and dreamed of for him.

As the years went by, each goal became a bigger one for Taylor. Soon, the goal was to graduate high school with a Standard Diploma. Something I never had time to even think about when he was a toddler, because we were too busy learning to talk and read and make friends.

Now his current  goals are to be successful at his job and to learn how to drive alone (which he is working very hard on). When he has mastered those, he will add a new goal.

Let me say this. You have one advantage that I didn't have all those years ago.

Information. Information. Information.

Use it! Research and then log that information away.

Read the blogs. Read the books. Go to the seminars.

Meet other parents with children (or adults)  on the spectrum.

Listen to their stories and use that knowledge and experience to your advantage.

Most importantly realize that one day your child will be a grown man or woman and they will still need you.

And in this moment, allow yourself to enjoy that first time your son or daughter uses their words without worries of tomorrow. Enjoy that first picture they draw for you or that new song that they learned to sign for you.

I guess what I am trying to say is that it is okay to just focus on this day. You are allowed. Be in this moment and savor all the blessings that come along the way. That's where they learn. That is where they grow. That's where their potential is discovered. In that moment with you.

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.

When A Lion Roars

When Taylor was in the 4th grade we heard the term “DAN! Doctor” for the first time. “DAN” stands for Defeat Autism Now (DAN!) and was a project of the Autism Research Institute, founded in the 1960s by Dr. Bernard Rimland. DAN! Doctors were trained in the "DAN! Protocol," an approach to autism treatment which starts with the idea that autism is a biomedical disorder.

At this point in our lives we were still trying to discover the “why” and the “how” of Taylor’s autism. Was it because of the MMR shots? Was it because he had Leaky Gut Syndrome? Was it food allergies? We read everything and all it did was add to our confusion. Keep in mind, this was 2006 and there was not a lot of good information out there about autism.

Okay, I admit, I was still hoping I could find a cure for Taylor. Hell, it worked for Jenny McCarthy, right? (That was sarcasm by the way.)

First thing I did was remove all the gluten in his diet.

He was still autistic…and now he was also miserable.

I did the special home test that tested to see how high the levels of mercury were in his system.

Answer? Not very high and…he was still autistic.

I sat in a hyperbaric chamber with Taylor over an entire summer. Up to 2 hours a day on some days making my other two boys spend most of their summer sitting in a lobby playing, coloring or reading while I sat with Taylor.

Guess what. Taylor was still autistic.

So how about this DAN! doctor? We drove Taylor to a neighboring state to see what this DAN! Doctor could do for Taylor. Was there a special therapy we could try? Maybe there was miracle pill we didn’t know about.

What I know is that we had high, high hopes. The doctor sat with Taylor for over an hour trying to get to know him. "Doc" was really a kind soul, but it became clear that he had no special cure for Taylor. What he did have was more information that would help Mike and I better understand how to help our son.

"Doc" had ideas of how we could help make Taylor’s life better. Yes, he suggested various vitamins and such but the most important thing he did was teach us more about sensory sensitivity and how draining and exhausting it was for Taylor.

During our conversation with "Doc", I told him how Taylor had started to become very sluggish. He would drag whenever we would go anywhere. When he was a toddler he couldn’t sit still, but now he was the slow poke of the family. Ten year olds should not be sluggish! They should have all the energy in the world and definitely have more energy than mom!

I told "Doc" about the week before going on a field trip with Taylor. The other kids were running circles around us while Taylor walked around slowly. At one point, we came up to a table that was selling tourist items and Taylor crawled underneath it while his friends shopped. I was perplexed. I mean it was warm, but it wasn’t blazing hot. Where did Taylor's energy go? When did this happen?

After listening to my story about the field trip the doctor asked me the strangest question.

“Does Taylor sweat?”

I started to answer “yes, of course” but suddenly, I realized that I couldn’t think of one time I had seen my little boy sweat. I looked at my husband and he seemed as stumped as I was. I thought back on that day of the field trip. Taylor was obviously hot, but he wasn’t sweating. The other boys in our group were. I remember their hair stuck to their foreheads, the beads of sweat on their upper lip, but not Taylor.

We live in Alabama, probably one of the most humid, hottest and miserable places during the summer. If you have been to Alabama, you will understand. Even if it is 70 degrees outside, you will find yourself in a full body sweat because the humidity is 200%.

To not sweat? What the heck?

I sat there thinking of all the times in the recent past that we had been playing outside and his brothers would play and sweat like crazy, but not Taylor. If we went to the playground, he would climb to the top of the slide/treehouse and just lay in the shade at the top like he was exhausted.

I thought about him playing football in the backyard with his dad and his brothers. He would play only a few minutes before going and sitting down on the porch. Something my husband and I mistook for disinterest.

Taylor wasn’t exhausted or disinterested, Doc explained, he was just trying to find a way to cool himself down.

“Imagine,” Doc said, “that you are walking in a jungle. All of a sudden, you hear a lion roar. What happens? Your heart starts beating faster, your ears seem to turn up the volume and suddenly you can hear everything around you. Your skin becomes very sensitive, maybe the hair has even stood up on end and YOU STOP SWEATING.”

“Now, all of your senses are on high alert. Your body is in survival mode,” the doctor said. “This is what it is like every single day for a lot of kids with autism.”

I was stunned. What a great way to explain this to me. I felt I had a better understanding of what things may be like for Taylor. No wonder he had melt downs. How stressful all of this must be to him!

By this time in Taylor’s life, his melt downs happened less and less. He had begun to learn how to handle stimulus overload. He still had his days but after hearing this analogy, I was even more proud of how well Taylor was doing.

We still had a problem to solve, though.

Taylor was getting overheated too easily. This explained the mystery of why Taylor could stay at the pool all day but only a half hour at the playground. Because he stayed in the pool and remained cool.

So. What do we do about this?

The doctor suggested that the best way was to teach Taylor’s body how to sweat.

Oh. Um. How do we do that exactly?

He suggested maybe sessions in a sauna. I laughed pretty hard at that. There was no way Taylor was going to sit in a sauna for any length of time. Oh my God, just shoot me now!

The other suggestion was to put Taylor in sports so he would exert himself.

Well, we had already tried sports. Taylor played Upward Basketball and Upward Soccer but team sports weren’t for Taylor. I mean, he had fun but he didn’t exert himself. He wasn’t competitive and was not aggressive. Basically he would wait until someone tossed him the ball and wasn't interested in the "winning" part.

We had him in Taekwondo, but that didn’t seem to be enough to get him sweating but I was determined to fix this for him.

It would be 2010 before I saw Taylor really sweat for the first time. I had started doing CrossFit at the karate school and thought, “maybe this could help Taylor” and enrolled Taylor into the CrossFit Kids class.

It was after Taylor finished his second class of CrossFit Kids that it happened. I walked up to high five him and saw it! In fact, when I close my eyes, I can still see it.

On his temple, above his left eye there was a drop of sweat rolling down toward his cheek.

Was I really seeing this? I started jumping up and down I was so excited! I know his coach thought I was crazy, but I explained the whole sweaty thing to him and he joined my celebration.

Who would have thought that seeing a child sweat could cause so much joy?

After that day, it just got better and better. Taylor had begun to sweat. FINALLY! Thank you CrossFit!

Taylor still does CrossFit with me. He has worked out with me since that day in 2010. I love seeing him active and you know he is getting serious when he takes his shirt off.

For me, Taylor taking that shirt off during his workout means more to me than anyone in that gym realizes. It means that his body is sweating like its supposed to do.

No, we didn’t find a cure for autism but Taylor was able to teach his body the proper way to cool down. He overcame one of the side effects of having sensory sensitivity. One in a list of things he has overcome.

I think that is pretty amazing.

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.