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.

"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.

The Reading Loft: A Safe Haven

Taylor on his very first train ride on a REAL train. 

In my last post I had begun the conversation about sensory sensitivity and how it affects the lives of autists and their families.

When your child is non-verbal or limited in their speech, it's especially hard to determine what may be causing your child distress. We parents become detectives trying to solve the mystery of “why is my child crying?”

It can be frustrating, to say the least, and sometimes the mystery is never solved and ended with me in tears along with Taylor.

When Taylor was four years old, my husband and I were finally able to determine that Taylor could not handle loud crowded rooms. It caused him so much distress and he would just scream. 

What was interesting to us is that Taylor didn’t seem to mind ALL things loud. For example, Taylor LOVED the sounds of trains. If we were ever stopped at a railroad track, he wanted us to roll down the window so he could hear the whistle blow and hear the clack of wheels on the tracks. He is now twenty years old and he still loves this. As soon as the railroad crossings go down, so do the car windows.

Put Taylor in a crowded cafeteria when he was in kindergarten though, and he would be gone OUT THE DOOR! He was fast, too! We called him a “bolter” as in “a bolt of lightning". With my husband and I finally realizing how awful crowd noises were to Taylor, we were able to put this in his I.E.P when he started Kindergarten and the school made adjustments to his schedule to help with this.

The biggest concern was lunch period. If you are a parent, then you know how loud a lunchroom full of elementary kids can be. The solution was to place Taylor in the first group of children to go to the lunchroom. It’s a simple thing, but oh my goodness what a difference that made for Taylor. Going to the first lunch period meant that the noise of the lunchroom would be a gradual increase around him. Taylor would be able to adjust to the increase of the noise instead of dealing with the shock to his senses of walking from a quiet hallway into a loud lunch room. It worked like magic.

We still had a lot of bumps and sharp turns in the road to work through, though. His kindergarten teacher, Mrs. Gibbs, was amazing and she stayed in contact with me on a weekly basis. One of the first (and biggest) problems we encountered with Taylor was his tendency to run out of the classroom. Unlike all the other teachers on the hall, Mrs. Gibbs had to keep her classroom door shut at all times so if Taylor chose to bolt, he would at least be slowed down when he went to open the door.

This became a daily problem. Mrs. Gibbs was having to chase my son down the hall on a regular basis. This needed to stop. My husband and I sat down with Mrs. Gibbs to figure out a solution but first we had to solve the mystery. Why was Taylor trying to escape the classroom?

After asking Mrs. Gibbs several questions about how a typical day for Taylor looked like, the problem began to reveal itself…and the solution.

Most of the instances where Taylor wanted out of the classroom was when the classroom became louder than usual or they broke into different groups, all doing different things. I think the commotion of all the students getting out of their desks at once was too much. Basically, when Taylor became over stimulated, he needed to get out. It didn’t help that the little girls wanted to “help” Taylor. They were sweet as ever and just wanted to be little mommies, but this meant constantly pulling on him, wanting to hold his hand or sit next to him as he worked on his computer. This really annoyed Taylor, Mrs. Gibbs was certain of that. This would lead to more problems, but for now we had to solve the first problem. Why was Taylor running out of the classroom and how could we make him stop?

I stayed up all night thinking about this. Trying to put myself in Taylor's shoes and I feel like I began to understand what was happening. During our meeting the next morning, I said to Mrs. Gibbs “Imagine you are in a crowded party trying to work a hard math problem or just read a book. People keep jostling you, pushing you, pinching you. They keep yelling in your ear. Some people keep coming up to you and try to squeeze you really hard. Maybe they have the music cranked way, way up. You become very stressed out. What do you want to do?”

Immediately she says, “I would want to leave.”

YES!

While no one was pinching or screaming at Taylor, for him the stimulus was the same. Every sense was on extreme alert and he was completely stressed out. With no ability yet to use his words correctly to tell people to stop touching him or be quiet, he did the only thing he could think of. He ran away. Fight or Flight? Most of the time it was Flight, although some of those little girls experienced that Taylor could bite hard. Those were the Fight days. Those were the worst days.

The conclusion? Taylor was highly stressed out. He was essentially having panic attacks, multiple times on a daily basis.

The solution?

Mrs. Gibbs had a reading loft in her classroom. It was like a top bunk bed with books all around. Taylor loved this area. When the class would break off into reading time, this is where Taylor wanted to be.

So Mrs. Gibbs had the suggestion of giving Taylor this option as opposed to running away.

This would also be a fantastic way to get Taylor to start using his words.

The next time Taylor was in the class and tried to escape, Mrs. Gibbs said to him, “If you need a break, use your words. Say ‘I need a timeout’.” She then told him that if he used his words, he could take a timeout in the reading loft until he felt better.

It took a couple of times but Taylor got it. At this point in his life he was learning to talk by learning complete phrases since he was still unable to create his own sentences yet. This helped him so much. When he became stressed or overwhelmed, he would go to Mrs. Gibbs and say “I need a break”.  The first few times, he just tried to go straight to the loft instead of out the door, but Mrs. Gibbs insisted he use his words first. So, not only did Taylor get a chance to ‘reset’ after a stressful situation, he was also discovering the reward of using his words.

He never stayed up in the loft long. Just the time he needed to calm down and work through his panic. What we didn’t expect was how this would help him become less and less overwhelmed. The longer the school year went on, the less “Timeouts” Taylor needed. I think for Taylor, just knowing he had a place to go if he needed it, reduced his panic attacks significantly.

It was such a small little thing and yet it changed his whole year and made his life and the lives of his teacher and peers so much better as well.

Sometimes the solution to a big problem can be the simplest thing and I am so grateful for Mrs. Gibbs for working with us and helping Taylor have a great start in his school career.

What is Sensory Sensitivity?

I was having lunch with a couple of friends of mine the other day and the discussion of "Sensory Friendly" came up and how important this is for parents who have kids with special needs. 

What does "Sensory Friendly" mean and why is it necessary?

I don't want to do these children a disservice by just skimming over the surface of this topic. So, before I jump into this post, let me warn you, this may be long, but hopefully it will be helpful. For this reason, I will break this subject down into several small posts giving you my perspective and a glimpse into what our experience with sensory sensitivity has been with Taylor. 

Okay. Let's start with the "what".

The sensory friendly initiative also known as the sensory movement allows individuals with autism and other sensory needs the ability to see and experience all the things the world has to offer, without being overwhelmed by everything. (You can learn more about what our friends at KultureCity are doing with this here.)

There are many ways business owners can create a sensory friendly environment to their businesses. One way is by offering head phones if their environment is very loud. Having quiet areas or picture signs are also ways to create a sensory friendly environment.

However, the most important thing a business owner can do is educate the staff about sensory sensitivity and the best tools they can use to help if a situation were to occur.

Why is this necessary?

The short answer? Acceptance.

If you have a child on the spectrum, I am sure you already know what it means to be sensory sensitive, but let me give you some examples that I have experienced with Taylor over the years.

When Taylor was 18 months old, my dad became an ordained minister. I was so proud of my dad and I wouldn't have missed the service for anything. My husband and I took Taylor with us to this large church where the ceremony was taking place.  After the service, I picked up Taylor from the baby room and then met my husband and my dad outside of the fellowship hall where they were waiting for us so we could all go in together. 

Taylor was so happy to see his Pop and wanted to go to him. My dad took Taylor from me and then opened the door to the fellowship hall to go inside. My dad didn't make it a foot in the door before Taylor was suddenly screaming. I don't mean crying, I mean, we thought he was hurt! My dad thought he had accidentally pinched Taylor or something and quickly stepped back into the hallway and handed Taylor back to me. 

As soon as the doors were shut again, Taylor's cries ceased. 

"Okay," we thought, "Let's try this again." My dad opens the door and Taylor starts screaming immediately but this time, I was holding Taylor. I knew I didn't pinch that baby! 

We finally figured out it was the noise of the people inside the fellowship hall. Since we were the last ones in, all the other attendees were already inside the fellowship hall, eating, talking and laughing. It was very loud in that room and Taylor was having none of it. Going from the quiet hallway into a room with several hundred people talking at once was a complete sensory overload for Taylor. 

He WAS hurting. The sound was literally hurting his ears and maybe his head. Remember, Taylor wasn't talking at this age so this was like a mystery we were trying to solve. It's only hind sight that we knew what was going on then. This was before he was diagnosed, so on this night we just chalked it up to Taylor being a very tired baby.

During those toddler years, we seemed to always have a very tired baby when it came to going out in a public place. We could no longer go to restaurants. I mean, we certainly tried to, but it was such a miserable experience...for all of us! We would put Taylor in the high chair and he would scream the entire time. We tried bringing Taylor's favorite foods with us for him to eat. It didn't matter. What I did know was that Taylor wanted out of that highchair. We couldn't do that, of course. If we took him out of the high chair, he would have headed straight for the door, and fast! We didn't understand at that time what was going on. Taylor wanted to escape that atmosphere. It was just too much for him. My family and I just thought we were experiencing the "terrible twos". The thought of a sensory sensitivity issue hadn't even entered into our vocabulary yet. So, we just didn't go out to dinner much for about 2 years.

Take-out it was.

One time, I remember in particular, was also when was Taylor was around 18 months old. We wanted to visit a new restaurant that we thought would work for Taylor. This restaurant sat right on a creek next to a railroad track in our home town. Taylor LOVED trains, so my husband and I thought this would be perfect! Taylor would be able to sit and watch the trains while we adults had a great dinner. 

We didn't last 15 minutes! When we walked in the door, the first thing Taylor saw was an enormous moose head mounted on the wall above the hostess desk. It was HUGE!

Taylor balked! To his defense, it was ginormous, so we took Taylor out to the front porch of the restaurant to wait. When our name was called, I had to go the long way around the hostess desk with Taylor so that he wouldn't be traumatized again by the giant moose. Once we got to our table, I sat Taylor down in his chair and prayed for a train to come by. I sat down and looked over at Taylor and saw that  his eyes were huge, looking up at the walls all around him with his little lip was quivering. He was terrified! All around us were mounted animal heads! Deer, bears, wildcats, fish, you name it and my child was about to go into a full blown melt down.

We left before the waitress could even bring us our water.

So, okay, this may not have been as much of a "sensory thing" per say, but many years later we would revisit this restaurant when Taylor was four years old. When we pulled in the parking lot, Taylor kept repeating one word and pointing at the front door. "Moose, moose, moose."

We were stunned! We had been to this place for literally 15 minutes when he was 18 months old and he REMEMBERED the giant moose! The difference is that THIS time, he was prepared . Taylor expected to see the animals on the wall and he was not scared this time. This is an example of how pic syms can help children on the spectrum in a place of business. 

Maybe if there had been something right outside the door with photos of the animals on the wall, Taylor would have looked forward to seeing them. Who knows?

Maybe not. Honestly, they bothered me, too.

It took us another two years for Mike and I to finally figure out that Taylor did not like loud crowd noises at all. As I mentioned in the post before this one, if there were more than a few people in the room talking at once, that was it. Meltdown.

The night it finally clicked with me was Christmas Eve when Taylor was four. We had just bought our new home and wanted to share it with our entire family, so I volunteered to host my mother-in-law's family for Christmas. There were about 15-20 people in our house that evening. As the night went on, we began to relax, catch up and laugh at family stories and the volume got louder and louder.

I heard it first. Crying. No, it was more like a yell-cry. My cousin looked at me and asked "is that Taylor?!"

I ran upstairs and laying on the bridge that overlooked our living room was Taylor. He was laying on the floor, curled up in a fetal position with his hands over his ears. This was very out of character for my quiet Taylor.

It was the saddest thing ever. I felt awful. Taylor couldn't deal. We had never had that many people in our new house before and he wasn't ready. Between the loud talking, unwrapping Christmas presents and other children running around the house, Taylor was in a total sensory overload.

I finally was able to calm him down and the evening turned out wonderful, but I had learned something very important about my son and it went a long way in helping him in future.

People with Autism are very sensory sensitive. It's like all five of their senses are on high volume all the time.  My family learned along with me that night what that looked like and what we could do to make Taylor's evening more enjoyable. We brought our voices down some. We sent the other kids to the playroom to play. We made sure Taylor knew he could leave the room if he needed to "get away" and most importantly, we paid closer attention to how he was handling the situation.

We became aware, accepted it and then we worked with him.

That is what sensory friendly is about it. I want to help educate people and encourage business owners to become more inclusive for those that have sensory issues. Hopefully, through this blog, I can do just that.

It's just not enough to be aware. Awareness is acknowledging there is a need. Acceptance is knowing there is a need and then moving to do something about it.

My next post will elaborate more on this subject for those that would like to learn more. Stay tuned...