Saturday, April 1, 2017

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.

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