Thursday, July 13, 2017

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.

Friday, May 5, 2017

Speech Delay or Autism? pt 3 of 3

Video quotes. This would be how Taylor continued to learn how to talk over the next few years.

At first it was so great. We were starting to communicate with words and sentences, but it was still sporadic and he only talked if he had the appropriate sentence to plug in. Although he was now talking, he spoke mostly in quotes from his videos.

I’ll be honest. After a while I wondered if he would ever use his own words. Was he always going to speak in movie quotes? What would his sentences sound like if he didn’t use the same voice inflections as the characters?

When I tried to get him to repeat sentences after me, it would come out very robotic and monotone, but have him say a quote from a movie and you would hear excitement, or concern or happiness in his voice. Whatever that character felt, you believed that Taylor felt it also when he repeated it. Echolalia is rough sometimes. On one hand he was finally talking, on the other hand it was like listening to a recorder.

I remember when he was a bit older, maybe six or so, and he was wrestling with his Pop. Pop picked Taylor up by his feet and turned him upside down, ready to swing him around. Taylor had about had enough of wrestle time and exclaimed, “I’m not as crazy as you are! PUT ME DOWN!”

His Pop put him down and looked at me with this look of joy.

“Did you hear Taylor?” he laughed, “he told me to put him down. That’s fantastic!”

Have you guessed the movie, yet?

I just smiled a little and said, “Well, that is actually Mowgli from the 'Jungle Book'.”

Pop, still smiling, looked at me and said, “But he meant it!”

It was a reminder to me that Taylor didn’t just need those videos to help give him his sentences, he also needed them to teach him voice inflections.

I don’t think he hears his voice in tones. Even today at the age of twenty, I have to get him to repeat things that he says with a less harsh tone because most of the things that he says comes out very abruptly. He tries and has been trying for years to soften his voice. He tries to add the question in his sentence or concern if that is what is needed. He is getting better but it is a slow progression. It's hard to put a specific tone in your voice when you can't hear it yourself and I really don't think he can hear it in his own words.

It’s hard for him. Teaching my son about how language works has been a lesson for me as well. If you have never tried to teach someone how to say a sentence with “my” instead of “your”, you have never experienced real, hair pulling frustration.

Here's an example of a conversation that would go on for way too long before I threw my hands up in exasperation.

me-“Taylor, say ‘I want some milk.’”

Taylor-“You want some milk.”

me-“No, when you say it you are ‘my’ and I am ‘you.’”

Taylor-Blank look.

me-“Okay,” pointing at his chest, “say, 'I want to have some milk.'”

Taylor pointing back at my chest, “I want to have some milk.” (as in, me)

me-“No, you are I.”

(screaming in my head. 'Dear God. Please make this stop!')

He eventually got it. It was a very long couple of months teaching him that little gem.

Language will always be something that Taylor will have to work on. Being his voice inflections, the appropriate things to say, how to ask someone how they are doing and then LISTENING for their answer…all of it.

He may never learn how to chit chat. If it’s not important to him, he is not going to sit and talk about it. I know that is not very polite but it is what it is. If you know Taylor, you aren’t offended. If you don’t, you will soon catch on.

At the age of 20, those metaphoric library doors in his brain are wide open now. I have conversations with my child. It may be about only the things that interest him, but they are conversations. He talks to me.

He gets frustrated with his brothers and he will tell them so. If he has something important to say, he will say it. Mostly though, he wants to talk about movies, dogs or Godzilla.

That is perfectly okay with me.

I prayed hard for these moments. I prayed without ceasing to have the opportunity to actually say to him, "Oh my gosh Taylor, that's too much talking." or  "Let's play the quiet game everybody!". I am happy to say most times he responds with "Why are we playing the quiet game?" and usually he is the first one to lose. I smile because I know that banter is a privilege to cherish and I see it for the miracle it truly is.  Between you and me, I am pretty sure he knows that I don't ever want him to win the quiet game. Just keep talking Taylor.

Monday, May 1, 2017

Speech Delay or Autism? pt 2 of 3

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

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

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

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

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

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

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

I listened a bit more closely.

“Mother? Mother? Where are you mother?”

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

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

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

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

Damn, echolalia. I was crushed.

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

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

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

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

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

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

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

I wanted normal.

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

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

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

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

This was big. This was scary.

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

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

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

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

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

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

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

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

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

His words couldn't get out.

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

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

Friday, April 28, 2017

Speech Delay or Autism? pt 1 of 3

Oh, how I longed to hear Taylor talk. From the age of 18 months it was his language skills, or lack thereof, that was our first red flag.

I had a list of his words that I kept on the refrigerator. Every time he said a new word I wrote it down immediately.

Looking back, I think some of those words may have been more wishful thinking on my part than him actually saying it. If it was close enough that was good enough for me. By the time he was two years old, this list only consisted of 26 words.

I knew something wasn’t right.

He was able to communicate to us in his own way, though. For instance, he could point that little finger. If he wanted something, he would point and grunt. Sometimes grabbing our hands and taking us to where he wanted to be and show us what he needed or wanted. We knew when he was thirsty or hungry or sleepy. We knew when he was happy, sad, angry or even frustrated. He could say a few single words but there was nothing even as simple as “mommy, I tired,” or “look mommy” that came out of his mouth. The words he did say were ill pronounced and only his dad and I really understood what he was saying. Mostly, it was the pointing and grunting.

I knew he needed speech therapy and every time we went for one of his checkups I would bring it up to his pediatrician.

“He’s fine, just a little behind.” ...“Boys usually develop a little slower than girls.” ...“He will catch up.” was what I was told every single time.

Well, Taylor wasn’t “catching up" and I was more frustrated than ever that no one was listening to me. I don't think I can express how badly I longed to hear Taylor say the word "Mommy" and that day just wouldn't seem to come. He was almost two, he should be saying "Mommy"!

Finally, when Taylor was two and half years old, his pediatrician acknowledged that Taylor needed speech therapy.

It never occurred to me at the time that it would be so much more than just a speech delay. I knew nothing about autism at that time. What I did know was that I had a happy, loving and very curious little boy that just wouldn’t talk.

We took him for his first visit to the speech therapist and to be honest, I was freaking out. I knew Taylor needed speech therapy but this was going to cost us so much money! How were we going to be able to make this happen?

The speech therapist worked with Taylor for about 30 minutes and then called us into his office. What he said confirmed what I already knew. Taylor was going to need a lot of speech therapy, no less than two days a week, possibly three. Before I could go into panic mode, he explained to us that Taylor would qualify for free speech therapy. FREE?

Yes. FREE.

He explained that most people don’t know about it, but if your child is developmentally delayed in anyway, they qualify for free services. The state pays for this, but if you don’t ask, no one will tell you. At least that was the case back in 1999. So ASK!

From this point, we visited Children’s South in Birmingham, who evaluated Taylor and then set him up with a speech therapist. She would come out to see him for their sessions. This was such a relief to both my husband and myself. We both worked full time and were trying to figure out how we would get Taylor to therapy with our strict job schedules.

What a relief it was to know that she would actually be going to his daycare twice a week to work with him. She was so great with him, too. She really cared about him and his progress and that was evident on her very first visit. Taylor could sense it as well and he started to really look forward to their time together.

Her very first goal was to have Taylor “use his words” when he wanted something.

As I mentioned before, he had said a few words up until this point, but never a full sentence.
Well, let me elaborate a bit. He actually had said full sentences, but they were not his own. The sentences he said were echolalia from his videos and usually it was only his dad and I that could understand him. It gave us hope, though. If he could say words at all, I was determined that I would one day have a conversation with my child.

His speech therapist would call me each evening after their sessions so she could tell me what she was working on with Taylor and I could continue the process at home with him.

During her sessions, she always brought a bag of toys. Taylor LOVED that bag of toys. The first day, she just dumped it out on the floor so that Taylor could see all the goodies that were inside. That was the only time she did that. From that point on, Taylor had to “use his words” to get a toy from the bag.

He had to say “hi” to her before she would even consider giving him anything out of the bag and she would point to her face to encourage him to look at her while he was saying “hi” to her. He really, really struggled with the eye contact, but he caught on really fast to saying “hi” to her. He wanted the toy train! Yes, it was a reward system but it worked for my 2 year old.

The next thing she did was give him a phrase he could plug into most situations. It was “May I have…?”

Taylor learned this phrase and would then fill in what his need or want was. To get a toy from her bag, he had to say “May I have…?” and then add to the sentence whatever it was that he wanted.

He began to use it outside of his therapy sessions within a few sessions. I was beyond excited!

“May I have…milk?”

“May I have…outside?”

“May I have…Boos coos?” (Blue’s Clues)

My favorite memory of him using this phrase was one night while Mike and I were watching TV. Taylor wanted his daddy to get up. He came over to Mike and was pulling on his hand, tugging and tugging trying his hardest to get his daddy to stand up. Mike told him to “use your words”.

Taylor stopped, rubbing his finger on his lip, thinking. Then he grabbed his daddy’s hand again and said “May I have…Daddy come here.”

IT WAS AMAZING! It was Taylor’s first full sentence that he had created. Yes, the first three words were already formed but not the rest! He did it!

Mike jumped up immediately and headed off with Taylor. I sat on the couch and cried. I never thought six little words could bring me such joy!

This was the beginning of how Taylor’s language skills would develop. He learned language in chunks. What I mean by that is he would learn a phrase and then learn how to change it to fit his needs at that moment. What helped him the most was watching his videos.

Movie videos would become a HUGE part of Taylor's life, not only as something he loved but also as a tool for his speech development.

Tuesday, April 11, 2017

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.

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.