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.

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.

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.

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.

Early intervention, Love and Acceptance.

Mrs. Ashley and Taylor on a field trip to Baker's Farm.

Soon after our meeting with the psychologist and receiving the “Official/Unofficial” diagnosis for Taylor, (I refuse to call this an official diagnosis and you can read about that horrible experience here) we continued to seek out people that could possibly understand what we were dealing with and help us determine what steps we should take next.

There weren't many people to talk to and for the most part, we still felt like we were on our own but we were determined. It also helps that I am a pretty stubborn woman. This was my child and I was ready to kick autism on its butt, whatever that may mean.

Taylor was already receiving speech therapy so we were ahead of the game on that but we understood that this may be something we would be dealing with for a lifetime. Mike and I continued to pray that this was just a developmental delay, not autism, and that Taylor would grow out of it like my friend’s son did. I think every parent who has a child with autism prays this prayer but we knew that we still had to be proactive. We wanted Taylor to have as much help as we could get for him. We didn't know much about autism but we knew we weren't going to just sit around and just give up without trying everything in our power.

A good friend of mine told us about a program at an elementary school in the town next to us that sounded perfect for Taylor. It was called the Eclipse Program. The class took children, ages 3 years – 5 years, and was an even mix of Special Needs children combined with Typical children. The one good thing about that doctor’s diagnosis was that it got Taylor in this class in the middle of that school year without have to go on a waiting list. A diagnosis is so important to help you get the help you need!

When we began to accept that Taylor had some form of autism, my first thought was “I should have kept him home. I shouldn't have put him in daycare.” I have said it before, but as a parent I will always wonder what I could have done differently.  This was one of those things. Daycare, as it turned out, was something that Taylor benefited greatly from. Although staying home with Taylor was not financially possible for us at the time,  looking back on it I realize that daycare was the absolute BEST place for Taylor to be when he was a toddler.

Why?

Well, where else was he going to learn how to be around his peers and learn to communicate with them? Where else would Taylor learn how to engage with other children and play with them without judgement? Toddlers don’t care if you can't talk, they just accept you for who you are. Daycare proved to work as a social therapy process for Taylor. He wasn't good at those social skills but he was much better than he would have been if I had hired a nanny and kept him at home.

I realize that this is not the case for all children with autism but for Taylor, daycare was very helpful. The Eclipse Program was even better! As soon as the Eclipse Program accepted Taylor, we pulled him out of daycare and he started going to school at Creek View Elementary. Taylor went to this school 5 days a week, 8:00-2:00. They let the Eclipse class out before the “big kids” got out of school to help keep the stimulus and chaos for these kids to a minimum. You don’t want a 3 year-old being run down by 3^rd graders regardless if they are special needs or not.

This Eclipse Class was such a Godsend and I believe this program should be in every single school! The class had one teacher (Mrs. Ashley is AMAZING!) and two teacher’s aides. This broke down to a student-teacher ratio of 4 to 1. Taylor received constant therapy through the class time work and games they played. He was also pulled out of class several times a week for speech therapy and occupational therapy. The typical kids worked as role models for the special needs children. Taylor was still learning how to act socially and if he had been in an environment with only children on the spectrum, that's the only behavior he would have learned. For the typical children in the class, they learned acceptance and patience and how to help their friends.

Taylor also learned how to charm the teachers, the aides, the office staff and even the principal! By the time he graduated from the Eclipse Class  when he was five, I think he had every teacher in that elementary school wrapped around his finger. He was adorable and it was ridiculously funny! It was also amazing! The progress we saw with Taylor during this time was phenomenal and the love the teachers had for him was unmistakable. It was for these reasons that we sold our house and moved so that we could live in this school district. The last thing we wanted to do was remove Taylor from an environment where he was accepted and loved and where his teachers expected the best from him. They saw his potential and they worked hard every day to help Taylor improve.

I know we are very blessed to have had this experience with the school system. I have heard some very sad stories and I wish every child had the kind of support system Taylor had (and still has). THIS is the way it should be! What makes me sad is that the school system ended the Eclipse Program a few years ago.  Even though Taylor was already in middle school when this happened, the sadness I feel for the children that have been denied such an amazing service is impossible to express.

Another amazing thing about the Eclipse Class was that it was free for children with special needs. This was SO IMPORTANT for us. We were young and financially strapped, still on that Ramen Noodle budget it seemed, borrowing from one credit card to pay on another. There was no way we could afford to pay even $40 a session with a speech therapist three times a week. Education is free for typical children, shouldn't it be free for our children with special needs? Luckily, we lived in the right place at the right time, but even so, we wouldn't have known about the Eclipse Program if not for my friend who knew about the program because she was a teacher.

One of my goals through writing this blog and my book is to bring a greater awareness to how important programs like this are to our children, the "special needs" as well as the '"typical" children. One of the reasons Taylor has done so well in school is because the "typical" kids in he school accept him. He's just Taylor to them. He has had friends through the years that have stood up for him, taken care of him and just been his buddy. Acceptance goes so much farther than you would think. The kids that surround and love him own my heart!

When I was a kid, the Special Education class was separated from all of us "regular kids".  We never crossed paths and if we did see them, we had no idea how to interact with them. I remember as 6th grader actually being scared of them because I just didn't understand. I remember one time in particular. I was checked out of school early and there was a girl with down syndrome sitting on the front steps of the school waiting to be picked up because they got out earlier than we did. When I walked by her, she reached out to grab me and said something I didn't understand. I was terrified and ran down the steps to my mom's car.

I remember this so well and when I look back on this it makes me incredibly sad. She just wanted to say "hey". She may have just wanted a hug or maybe she wanted someone to sit down with her while she waited for her mom. It is because of this girl in 6th grade that I had made the decision when I was pregnant that my child would be in an inclusion class. I never wanted my child to be afraid of someone with special needs. I wanted them to be the friend they needed. Little did I know that my child would be the one who needed acceptance.

I am also forever grateful for the teachers and care givers he had in his life through this Eclipse Class. I truly believe that Taylor would not be where he is today if it had not been for the Eclipse Program and his teacher Mrs. Ashley, his aides, Mrs. Joyce, Mrs. Tracy and Mrs. Dee, and his speech therapist, Mrs. Liddell. I hope they know how much they mean to me and I pray that other parents will have someone like these ladies in the lives of their children.

Our children deserve that.

From the bottom of my heart, 

Thank you.

Dan Marino and the Information Highway

In 1994, this commercial for the “Information Highway” had me losing my mind. I remember watching a young Anna Paquin being kind of creepy and then looking at my husband and saying “What the hell does she mean?!” I couldn't stand the commercial because I felt like I had just watched some clip from a 70’s hippy movie and must be lacking the drugs to understand it.

What was this “Information Highway”? I would soon learn that 1994 was the beginning of the future with the Internet, AOL and Yahoo (Google would come much later) although I really wouldn't get the full comprehension until five years later.

After Taylor’s first diagnosis, I began to explore this new world of the internet, complete with Yahoo searches and chat rooms, trying to find as much information as I could. The internet was nothing like today. Only people in their 40’s and older can really appreciate what it means to spend hours trying to download a file. That being said, this was a whole new world of resources available to me and I spent a lot of time on the internet just trying to find someone who was going through the same thing we were.

I met my sweet friend, Mary in a chat room on Parent’s magazine website. Both of us were dealing with the same issues with our 3 year-old sons. I had finally met someone who got it! She understood my situation and my fears. We became each other’s support system in those early years. Although we lived in separate states, this internet thing made it possible for us to connect and I am so grateful for that.

Then there is Dan Marino.

I have been a Miami Dolphins fan since I was fourteen. I am from Alabama and we do not have an NFL team but every Sunday my friends and I would get together to watch NFL football. I had to choose a team, right? My reason for becoming a Dolphins fan was perfectly reasonable… I loved their uniform colors! It only took watching a few games though before I knew I had chosen the right team. Dan Marino was amazing!

Over the years, I became more of a Dan Marino fan than a Dolphins fan and watched every special on him that I could. Okay, I may have been a little obsessed.

After Taylor’s diagnosis, I remembered back to an interview with Dan Marino when he talked about his son, Michael who has autism. I began to search for more information on this to see what I could find. What did Marino and his wife do? When did they find out their son had autism? What was their son like now?

This search gave me a job to do but more importantly I think, I began to feel less and less alone. I know that is silly, but here was my football hero since I was a kid and yet we had this in common. I became aware instantly that autism was not prejudice. It doesn't matter what you do for a living, who your parents are, what kind of money you make, what color your skin is. Autism doesn't care.

In my on-going search for answers and solutions, I came across a transcript of an interview with Marino where he talks about the first signs of autism that he noticed in his son. The more I read, the more it sounded like he was describing Taylor! In this transcript was a section where they talk with one of Marino’s sons, (he has six children).

It was reading this part, this insight by his fourteen year-old son, which gave me the most hope. When I started reading, I thought it was his older son they were talking with.  Then, a few paragraphs in, his son says “People ask me all the time what it is like to have a brother with autism. They are always surprised when I explain to them that I am the one with autism.”

WHAT?!

I read it again. This was Michael Marino?! Now I was REALLY intrigued! My very first thought was “he can talk and he can talk well!” Could this happen for Taylor?

As I continue to read, I was fascinated, holding onto every single word. Michael then said something that would stick with me and help me with Taylor for years to come.

He said that he remembered when he was six-years-old and his mom would always demand that he look at her while she was talking.

I did this to Taylor all the time. Most parents do, no news there, right? Courtesy and respect. It’s important.

Then he went on to explain that all he knew was that he couldn't do it. He could look at his mom or he could listen to her but he was unable to do both. More importantly, he did not have the words to explain to his mom that he could not do both.

Oh WOW! This was LIFE-CHANGING for us in the South household and after we tested this theory out, immediately changed the way we talked with Taylor. First, I experimented just to see. I would have Taylor look at me while I was talking to him and ask him a specific question then I would wait until he looked away and ask him the same question.

Nine out ten times Taylor only responded when I allowed him to look away.

This was just the beginning of things but it gave me hope. It was a solution to a problem. I am a fixer and I felt like I had just accomplished something HUGE!

So, Dan Marino, in case you EVER come across this blog, I want to thank you from the depth of my heart. Thank you for sharing your story. Thank you, Michael for sharing your story. You both changed our lives and I am forever grateful.