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.

The Reading Loft: A Safe Haven

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

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

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

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

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

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

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

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

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

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

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

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

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

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

YES!

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

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

The solution?

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

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

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

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

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

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

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

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