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.