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.

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.