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.

We got this, Taylor!

Hearing the word “Autism” for the first time.

What a traumatic day that was for me. Autism. What was this? I didn't really know much about it, but it didn't sound good.

We had been keeping our speech therapy sessions religiously, never missing one. I was on a mission to teach this child how to talk. Taylor's words were coming one by one and my list on the refrigerator was finally beginning to grow but he was still unable to come up with his own sentences.

What I mean by this is that Taylor was learning how to talk by putting full phrases together, not words. An example would be how he always used the phrase, “Can I have more, _________" and then would insert whatever word would work.

He would talk with his videos and his words were becoming more and more clear. People could understand what he was saying a little more easily now. Jungle Book and Mary Poppins were his favorite videos and he would watch them over and over again.


(Here is a sweet video of Taylor dancing to Mary Poppins. I swear I could understand every word he said.) 

One night, Taylor amazed and entertained Mike and I for two hours as he stood on our bed and recited word for word, the entire movie of the Jungle Book, complete with the voice inflections. He was two and a half. Looking back I realize he probably grunted most of the words but we knew what he was saying and Taylor knew what he was saying. We loved every moment of this impromptu play but it did get me thinking. The speech therapy seemed to be working, but something still wasn't right.

The next time I saw his speech therapist, I told her what was bothering me. I asked her, “Why can Taylor recite an entire hour and a half long video to me, can say phrases that you are teaching him, but still cannot make his own sentences? Why can he say the words, ‘outside’ and ‘I’ and ‘Go’ and ‘Want’ but cannot figure out how to put these words together on his own to say ‘I want to go outside?’”

His speech therapist looked at me and I could tell she was flustered. She knew something was up but wasn't saying anything. I could see it in her eyes. Instead she said, “Let me see if I can get our child psychologist out here to see Taylor.” She wouldn't tell me why, just that she wanted to rule some things out first.

I wasn't ready for what I was about to hear. I will let you know that right now.

I WAS NOT READY.

The psychologist came out the next week. She spent about thirty minutes observing Taylor. Playing with him, asking us questions. To Mike and I, they were strange questions. I remember it like it was yesterday. Here’s an example of some of these questions.

Doctor- “Does Taylor have a high tolerance for pain?”
Me- “Well, last week he stuck his finger in hot candle wax at a birthday party and didn't even cry. Does that count?”

Let me pause right here. The reason I even mentioned this incident was because Taylor had just done this the week before. The one and only time that it seemed something didn't hurt him.

Also, at this exact moment, as if on cue,Taylor dropped a Blue’s Clues video tape on his big toe and immediately grabbed his toe, hopped around and started crying. It took his dad kissing it to make it better. THIS IS IMPORTANT TO REMEMBER!

Doctor- “Does Taylor like textures?”
Me-“Well, he loves getting the fall leaves in his hands and crunching them next to his ear so he can hear the sounds.”

Doctor - “Does he have a sensitive gag reflex?”
Me- “Yes. Very sensitive.”

Doctor- “Is he affectionate?” (While she has been asking us these questions, Taylor has been jumping off the couch into her arms. He has also been pulling on her bag because he thinks she is there for a “play time”. He is totally aware this woman is standing in our living room and he wants her undivided attention because he wants to get rewards like he does when his speech therapist comes.)
Me-While looking at Taylor jump in her arms, “Well, yes…obviously he loves people! “ I said pointing to him. “He loves kisses and hugs and cuddling with Mommy and Daddy, don’t you Taylor?” At that moment, he leaves her and comes over to me so I can pick him up and love on him.

Let me explain something real quick. My husband and I had NO IDEA what this doctor was looking for. We thought she was going to tell us why he wasn't talking. It was at the end of this 30 minute “interview” that she first mentions autism as a possible diagnose…as she is walking out the door. She told us to expect her report within the week.

We are stunned.

When she leaves, I break down and cry. I felt like the floor had been ripped out from under my feet and I just sank into the couch. The only thing I knew about autism at that time was from the movie Rain Man. One thing I did know was that my Taylor WAS NOT like that! Not even close! What the hell?

I was a mess. Part of me felt a sense of relief that I wasn't going crazy and that I had something to research and tackle, but the other part of me was devastated. She had to be wrong. What if she wasn't? Why him? WHY?!

A week later, we get the report. In the report this doctor states that: 'the parents have noticed high tolerances for pain',  and 'the child is non-affectionate', 'child appears to be severely delayed in speech' and 'indifferent to my attention and appears to be socially delayed'. It then went on to diagnose him as having severe autism and suggested that there was a high possibility of having to place Taylor in a special institution in years to come.

LET ME STOP RIGHT HERE. I am about to use explicit language so, you may want to skip the next few sentences.

Breathe Dawn…

This woman should lose her f**king license!  Was she even paying attention?! After spending approximately 30 minutes with my child, she writes a report describing some random child. Certainly NOT the child that had spent the entire time she was there with him trying to get her attention. This report could not possibly be about the child that was crying because he hurt his toe, while she stood there watching! She didn't even quote us correctly.

Did she just make sh!t up?! I was FURIOUS! Enraged! I called my husband in tears and read him the report. He honestly thought we got someone else’s report. I was beside myself, almost hysterical! Okay, fine. I was hysterical!

Here is what scares me the most. What if we had believed her? She had recommended that we put my child in an institution! The curse words I want to say right now just remembering this would make you blush. Almost sixteen years later and this still infuriates the hell out me.

Here is the important thing that I want you to take away from this. Believe your heart. Trust your instinct. Don’t just get one opinion. Don’t just get two! Do your research.

That’s what we did. We looked up everything we could find on autism. We did the tests with Taylor. Some he passed, some he didn't. We read everything we could find. What about diet? What about social therapy? Read, read, read. Research, research, research! That became our world.

The one good thing that came out of this awful report is that it lit a fire under me to prove this woman wrong. I had something solid I could research. I was no longer playing a guessing game with Taylor. I had something I could grab a hold of and fight. We learned that autism meant more than Rain Man.  We learned a lot!

Autism.

Okay.

We got this, Taylor!

We are all in this together and we will do everything in our power to make sure your life is amazing.

Doctors be damned!