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.

"Happy Birthday" is the worst!

As Taylor continued through elementary school, we learned more about what sensory sensitivity was really about and how difficult it can be to find the source of the discomfort.

Some things that I thought would bother him wouldn’t faze him at all. Loud music? Taylor LOVES loud music with heavy metal being his favorite. Even today, if a song comes on that he likes, we have to turn it up, while he simultaneously listens to a completely different song through his phone. With one headphone in, he would listen to both songs together.

Personally, this is where MY sensory sensitivity hits. It drives me nuts! How he handles that all at once, I may never know. It gives me a horrible headache, but he seems to be able to separate out both songs as he listens and enjoy both of them.

Commercials? That’s a big “No”! It doesn’t matter if it is on the radio or the TV, if a commercial comes on, no matter where he is in the house, he will run into the room, almost at a panic, and turn it down while holding his ears.Taylor even learned how to hold both ears closed using only one hand. He will shrug one shoulder up to it cover his ear while using his left hand to cover the other ear. This way, he still has his right hand free to continue doing whatever it is that he is doing. He has done this since I can remember.

Why don't all loud sounds bother him? Great question. Excellent in fact.

I have no idea. This is one of those mysteries I have yet to solve.

One thing that has made his life better are the headphones. He has them with him at all times and it has helped him deal with environments that otherwise may be a sensory overload. If a place is too loud or has a noise that bothers him, he just puts on his headphones and listens to his favorite songs or videos.

When he was still little, one thing that was guaranteed to send him into a full blown panic attack was the singing of the “Happy Birthday” song. We learned this the hard way when Taylor was 18 months old.

The whole family had all gotten together one evening that just so happened to also be my mother-in-law’s (MeeMaw) birthday. When we arrived at Mike's uncle and aunts house, MeeMaw met us in the driveway and got Taylor out of his car seat to carry him inside. As soon as MeeMaw walked into the house holding Taylor, Mike's uncle broke out into the loudest, most off key song of “Happy Birthday.” It was hilarious…to everyone but Taylor.

Taylor started crying and we could not get him to calm down. Mike's uncle felt so bad, but Mike and I told him that Taylor was just tired that evening. I don’t think it was the loud singing that made Taylor cry, I think it was because everyone joined in and also started singing together. No less than ten people were singing. Not one person was singing in key. No one singing in sync. 

Think about it. 

How many times have you listened to people sing “Happy Birthday”? Now try and think how many times it sounded GOOD. You’re struggling for an answer right now. I'm right, aren't I?

When Taylor was three, we went to one of his friend’s birthday parties. As we all began to sing "Happy Birthday" to her, I saw Taylor run out the back door. I ran after him and found him hiding under the back deck, holding his ears tight, curled up in a ball, crying his eyes out.

Okay. This was real. For whatever reason, Taylor couldn’t handle this song. He was completely inconsolable. I ended up sitting under the deck with him for almost thirty minutes trying to redirect him so he could move on from this song.

At Taylor’s fifth birthday party, I made sure to tell everyone not to sing “Happy Birthday” to him. They waited until he left the room and sang it anyways, leaving me wondering "who is this party really for?"

That was Taylor's last birthday party. Every birthday after that, we went somewhere special and had a much happier birthday boy.

One thing I know for certain is that I cannot change the world for Taylor. People will continue to sing “Happy Birthday” in Taylor’s presence. 

Now, when we go to birthday parties, I give him a head’s up. I walk up to him and whisper in his ear, “Taylor, they are about to sing ‘Happy Birthday’. Taylor takes that moment to put on his headphones or leave the room and then comes back after it is over. We have learned how to handle it. More importantly, Taylor has learned how to handle it.

Your first thought may be, “Well, the answer is simple. Just don’t go to birthday parties.”

Okay. Let's think about this because that was my first answer, too. 

It didn't work.

How many times have you been out to dinner and the waiters and waitresses start suddenly singing happy birthday to someone in the restaurant?

How many times have you walked into church or maybe a soccer game or a lunchroom and everyone decides to sing happy birthday to someone?

I can tell you that it happens more than you know. If it doesn’t affect you, then you don't really think about it. When you have a child that has a meltdown when he hears it, believe me, you will remember every single time it has happened. Having a panic attack over the birthday song may sound silly until you see it happen. I can promise you, there is nothing “Happy” about it.

Then, Taylor discovered YouTube. He found new ways to sing “Happy Birthday” and would ask if he could play his videos at birthday gatherings instead. The irony is that most of the versions he found were far more obnoxious than the original, but Taylor loved it. They made him laugh, so they made us laugh, too.

He still does this today. I always ask if we can sing and what we usually get is “how ‘bout this instead?” and then he will show us a new version on YouTube. The video below is from his last birthday. He let us sing with his video, then he had to listen to the video without us singing.

We have fun with this now and it is no longer a traumatic experience. It took us a few years, many tears and trials and errors but we learned a way around it. Taylor learned a way to function with this discomfort and that is what Mike and I work so hard to help him do. 

Our goal is always to teach Taylor how to handle things that are stressful to him and handle himself well in this crazy world of ours.

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!

Taylor's First Signs. Something is not right.

Taylor was such a happy baby and he was busy all the time! As soon as he began to crawl, I knew we were in trouble. I envied my friends who could have all these beautiful decorations on their coffee table. How did their baby not destroy those? You would not find any precious knick-knacks on our tables. Nope. Just a lamp and a telephone (remember those?). Anything else would have been in his mouth, on the floor broken or just gone. Nothing was safe below the two foot mark. If we went to visit friends, we had to take everything that was in his reach off their tables. Every. Single. Time. He was into EVERYTHING! We called him a "Busy Baby", we did not realize that this was one of our first signs.

RED FLAG #1
My first indication that something may not be right was when he was eight months old. I went to pick him up at daycare one afternoon and as I came to the door of his classroom, I stood there a moment watching him. Taylor hadn't seen me yet and I wanted to just watch him play. I always loved the look on his face when he first saw me in the door and I was waiting for him to spot me on this afternoon. The picture to the left is the precious face I couldn't wait to see every afternoon, crawling to me as fast as he could when he saw me.

While I was standing there, his teacher walked up to me and asked me if I had ever had Taylor’s hearing checked. I sort of laughed, and explained there was no reason. I knew Taylor could hear just fine and even told her how every night when my husband came in the back door, Taylor would hear the door chime, knew that meant Daddy was home and crawl lightning fast to go see his Daddy.

She didn't say anything so I asked her why she was asking. She explained that whenever she called Taylor’s name, he never responded to her. Then she demonstrated by calling his name loudly and sure enough, Taylor continued to sit there with his back to us, just having a blast playing with the dump truck. What the heck?

So I did what every mom would do, I called Taylor’s name. “Taylor!” Immediately he turned around and saw me. His face lit up and he went into the fastest crawl you've ever seen, working his way towards me. I just looked at the teacher and shrugged like, “well there you go.” He could obviously hear. Maybe he was just busy. Maybe he didn't like her voice?

But what did I just witness?

See, what I didn't realize is that not responding to his name is one of the early signs of autism. Although I thought he was responding to his name when I said it, he was actually responding to the sound of my voice. The reason he did not respond to his teacher was because he did not understand that the word “Taylor” was his name. It would take many more months before he finally understood this concept.

RED FLAG #2
It was not long after this that the biting started and I don’t mean a little nip, this kid could bite!! I think we lasted another month at that daycare before he was kicked out. Thus, the beginning of the nightmare called “Biting and Finding a New Daycare”.

I think we went through three daycares. My husband, myself and the teachers tried everything! Timeout, hot sauce (teachers were allowed to do that then), popping his hand, talking with him, separating him from the other toddlers. Nothing worked and I cannot explain how stressful my days at work were waiting for the phone call from the daycare that I needed to come pick him up again and take him home so I could discipline him because he bit another child. How do you punish a one-year-old, hours after the act when he has been completely removed from the situation?

You don’t. You just pray that he grows out of it. So, we prayed.

We tried to figure out the cause of the biting but the problem was that EVERYTHING seemed to provoke it. If he was frustrated, he bit. If he loved you, he bit. If he was scared, he bit. If he was mad, he bit. If he was really mad, he bit himself! In fact, initially the daycare thought it was Taylor being bit until we realized he was biting himself. He would bite the top of his wrist while he looked at you because he really wanted you to know just how pissed he was!

RED FLAG #3
As Taylor continued on into toddlerhood, my husband and I began to notice that his vocabulary had seemed to really slow down. Around 18 months old is when we really took notice. He stopped saying new words and then words he had already begun to say, he may say once and then never again. I had a list of his words that I kept on the refrigerator. Every time he said a new word, I proudly wrote it on the list. From 10 months to about 18 months it seemed I was adding a word a week but then he seemed to lose interest in talking. We would go weeks without saying a new word.

The biting continued.

I don’t think I would have been alarmed as soon as I was if it wasn't for our friends and neighbors who had babies around the same time I had Taylor. My friend, Jennifer lived down the street from us and had her daughter Rebecca, exactly one month after Taylor was born. We had play dates together and would walk them around the neighborhood with them in their strollers while they laughed and cooed.

As much as we try not to, we as parents do compare our children to others, I am admitting it for all of us, and it was very hard not to constantly compare Taylor to Rebecca with them being so close in age. I remember Jennifer being so concerned because Taylor began walking at 10 months and Rebecca refused to do it. She really was cute though the way she would scoot across the floor with one leg in front and one leg behind her. She was fine, of course and she walked perfectly when she decided she was ready to do it.

It soon became my turn to be concerned as Rebecca began to pass Taylor on the milestones. Taylor had a vocabulary of fifteen words and Rebecca was always talking. I told myself it was fine, just like Rebecca took her time walking, Taylor was taking his time talking. Besides girls and boys develop differently, right? I don’t think I believed it, even then. I knew in my heart something wasn't right.

My other friend, Lisa, had her son 6 months after Taylor was born. Jackson was born 3 months premature and was the tiniest little thing I had ever seen. For the first year of Jackson's’ life, if you asked Lisa how old he was, she would give you his corrected age (for example: he is 6 months old but was 3 months premi so his corrected age is 3 months old) So for the first year, Jackson was "corrected age" 9 months younger than Taylor instead of 6 months younger.

The reason I explain this is because it was watching Jackson that really brought it to my attention on how delayed Taylor was. I remember being over at Lisa’s house one night and Jackson was probably about 1 year-old. The entire time I was there, Jackson let out stream of “mama, mama, mama” or “ball”, or “mama ball” and even "Dawn, ball", "Dawn!". At this time, Taylor had never said “Mama”. Not once. He had no name for me. As much as I loved hearing Jackson say my name I still remember doing everything I could to keep from crying as I imagined what it would sound like to hear Taylor call me “Mama”.

I began to express my concerns. Why wasn't Taylor talking?! If Jackson was talking, certainly Taylor should be! It seemed I was the only one concerned, I think mostly because the only thing that Taylor seemed to be delayed in was his speech. Was I being paranoid? Taylor was just too "busy" to talk, right?

One night, another friend babysat Taylor for us. It was the first time Ginny had babysat Taylor. I was worried that she wouldn't be able to understand what Taylor needed because he was really just grunting at this point. When we picked Taylor up that night, she said he was perfect. She knew my concerns about Taylor’s speech and she wanted to reassure me that she saw a perfectly normal 18-month old. Ginny said she never had a problem that night at all understanding what Taylor wanted. "No problem at all!" She always knew what he wanted to eat or drink or what video he wanted to watch or what he wanted to play.

I loved her for that but I wasn't satisfied. I asked her simply, “what words did he say?” She stood there for a long minute thinking. I could tell that I had stumped her. I said, “He didn't say anything, did he? He grabbed you by the hand and led you to the refrigerator and pointed to what he wanted to eat and drink. He brought you the video he wanted to watch. He pointed at the things that he wanted to play with, right? Taylor is so good at expressing what he wants, that you didn't even realize that he only grunted and didn't said a single word. I am right, aren't I," I asked. The look on her face told me that I was right.

As much as we didn't want to admit it, Taylor wasn't talking like he should. It was time to do something about it. I knew something was wrong. At Taylor’s 18-month check-up, I brought it up to Taylor’s pediatrician. The doctor didn't seem very concerned and told me “let’s see how he is doing at 2 years-old.”

So, we waited.