Thursday, September 14, 2017

Does He Know?

My son is a bright young man. He is funny with a dry sense of humor. He has artistic talent and he is a good brother. He is twenty years old with a great job working in the ER at the local hospital.

He also has autism.

Does he know?

I ask myself this question from time to time. Does Taylor know he has autism? He knows he is different and that there are things he may never get to experience, like have a group of friends, driving a car at 16 or, most recently, moving away to college. Does he understand why?

When he was eight years-old, something remarkable happened between the two of us. At the time, Taylor was still struggling to communicate with his words. He had such a hard time articulating his thoughts and feelings. If something upset him, he was unable to tell us why or even what it was.

This was one of those days...at first.

It was a lazy summer morning and his younger two brothers, Brendan and Jordan, had been watching the Cartoon Network. Taylor had no interest in watching with them so he stayed in his room drawing with his computer.

As the morning went on, Taylor would come out of his room and just yell at his brothers and start crying. I had no idea what was going on and it seemed very sporadic. His brothers weren’t bothering him but something clearly was. I would turn down the TV, sit with him for a little bit and calm him down. As it continued to happened, he started to cry and it finally progressed into a full blown meltdown.

I have mentioned before that being a parent of a child with autism feels like being part detective. This was one of those instances. I was struggling here. What in the world was upsetting him?

Then I began to see the pattern.

My other two boys were watching “Fairly Odd Parents” and it seemed like every time the dad came on and began to talk, it would set Taylor off. I finally realized that it was the dad’s voice that was upsetting him. I had no idea why that would be, but it was definitely the culprit. We changed the cartoon to something else and Taylor instantly calmed.

Crisis averted, I felt pretty great that I had figured out the problem. Go me!

About 20 minutes later, Taylor walked into my bedroom, looked at me and said “I need a new brain.”

For a moment, I just stood there looking at him. My child had just rendered me speechless. First, in the most perfect sentence, he spoke directly to me and told me what he was thinking. After the initial shock of that little miracle, the impact of the sentence struck me numb.

This was the moment that I knew Taylor understood he was different. What made my heart break and threatened my tears to flow, was that it was obvious he didn’t want to be different...he wanted a “new brain”.

Coincidentally, the week before I had picked up an issue of “TIME” magazine in which they had published an article about the differences between the brains of autistic individuals and typical individuals, complete with CAT scans. I still had this magazine somewhere and at that moment I knew that Taylor needed to see it.

I told him that I had something to show him and so I dug out the magazine and we sat down together in our overstuffed chair. He seemed as eager as if I was going to read him his favorite Dr. Suess book.

Opening the magazine, I said “Taylor, you do not need a new brain. Your brain is just different and it works in an amazing way.”

Taylor replied in his sweet little voice, “Well, let’s see.” and began looking at the pages.

Once again, I was speechless. We were having a conversation! I had to hide my tears or I knew the magical moment would be gone.

So we began to read the article. I don’t know how much of what I read to him he really understood but he was completely enthralled with the CAT scans images.The CAT scans showed what parts of the brain lit up in response to different stimulants, such as seeing a familiar face or seeing something scary. I simplified it very much and I explained it to him, saying “This brain is what your brothers brain looks like and this one over here is what yours looks like. See the colors? The three of you have all those colors, but yours are just in different places than your brothers.”

Completely satisfied, he closed the magazine, hopped up and went back to his room. The moment was over and he was suddenly in a great mood again.

Did we just have a break through? I sat there for a long time filled with a whole range of emotions and a whole lot of hope.

Needless to say, Taylor was still Taylor and he continued to progress at the same rate he had been, but for that 20 minutes as we looked at that magazine together, I knew that Taylor understood a lot more than I realized.

Did he understand it was autism that made him different? Did he know he had autism?

As he grew older, he would still have those moments. Moments where he understood he wasn’t the “same” as his peers.

It was hard watching him realize that he didn’t have the friendships his brothers had as he watched them walk out the door to go to sleepovers or parties.

I am blessed, my younger two boys have never treated Taylor as anything other than their big brother. I don’t think they realize how special they are or how thoughtful. A great example is how they handled the sleepovers. Most of the time, they would invite their friends over here, and while Taylor may not have “hung out” with them while they were here, he still felt like he was a part of them. He felt included in the way that only Taylor can feel included.

Did Taylor understand it was his autism that made it harder for him to make friends? Did he know?

When Taylor graduated from high school, we went through this once again. He watched his friends move off to college and it was so apparent he wanted to do that as well. Not school, mind you, Taylor was done with that! School was hard for him and he was happy to graduate. No, it was starting the next journey that he realized he was missing out on.

His friend since they were born (as Taylor told me one day), Rebecca, had been accepted to Auburn and Taylor came home one day and informed me that he and Rebecca were getting an apartment together and would live in Auburn. (Rebecca was pretty surprised to hear this too, but she thought it was really sweet)

I said, “Taylor, you said you didn’t want to go to college.”

His reply, “You don’t have to go to college to live in Auburn.”

Touché my son!

Did Taylor really believe he was getting an apartment with his friend in Auburn? I don’t think so. I think he was just enjoying his dream out loud. A dream to be normal and to be able to do the same things as his friends.

Did he understand it was because he has autism that this opportunity will most likely never happen for him? Did he know?

Recently, Taylor has been very concerned that we are already close to the end of this year. He has said many times, “I can’t believe it’s almost September!” or “Can you believe that 2018 is almost here?!”

My husband and I began to realize that this wasn’t just your, “wow, time flies” kind of comment. Taylor wasn't just trying to make conversation. That's not really Taylor. No, Taylor was really becoming stressed about the year 2018.

Why?

Last year, I know that right before he turned twenty, he became really stressed. He told me he wasn’t ready to be twenty. One day he asked me if he would go to heaven when he died. He was already thinking about how he would be old and die one day.

“Holy crap!” I thought. He was really, really concerned about turning twenty!

My husband and I had a suspicion of what may be on his mind and sat him down one day. We asked him if he was nervous about turning twenty and he vigorously nodded his head, yes.

“I have butterflies,” he told us.

I asked, “Are you nervous because you are going to be a grown up?”

“Yes,” he replied.

My husband said, “Taylor, you know you can live with me and mom for as long as you want to. You don’t have to move away. You can be a grown up and still live with us, okay?”

Suddenly the tension seemed to melt from him and he was okay again.

This time was a lot like that.

The thing is we had already told Taylor he could always live with us, but I thought, maybe I need to remind him. I would also remind him of the fun things we were going to do in 2018 as well. Let him know 2018 was something to look forward to.

So, as I was driving him to work the next morning, I broached the subject. I reminded him he never had to move away and he told me he already knew that.

Okay.

Then I asked him, “Are you nervous about it being 2018?”

“Yes,” he said, “I have butterflies.”

So I told him, “We are going to do fun things in 2018, right? Tell me what we are going to do.”

He said, “We are going on a Disney Cruise.”

I said, “That’s right!”

Then he said, “And then Brendan is going to move away.”

Oh.

Oooohhhh!

What an idiot I am. How could I have not thought about that?

His brother has been looking at colleges for the past 6 months and in just a few more months will be graduating from high school and going off to college.

When I moved away for college, my sister was all “Bye Felicia!” so maybe that is why I never thought about how Brendan moving away would affect his brothers, especially Taylor. That doesn’t mean I shouldn’t have thought about it.

There went my “Mom of the Year” award.

This is going to be really hard for Taylor and it is going to shake his world. Brendan moving away will mean a lot of things. First and foremost will be that Taylor’s order, routine and normality will shift around. Big time!

It will also be another reminder to Taylor that once again, he is being left behind.That once again he is different and will not be able to have that same experience.

It breaks my heart.

Does he understand it is because of his autism? Does he know? Does he understand?

I think the real question is, does it really matter? It doesn’t change how Taylor feels.

I know that Taylor will adjust as he always does. It will take some time, but he will overcome it. He will continue to surpass all the expectations even as he takes the knocks and blows that life has and will deal him.

In this way, Taylor is just like everyone else.

He may not face the same stresses and challenges we all have in life, but he has them.

He has all the colors, just in different places and he will succeed in all those different places.

I know he will.

Wednesday, August 23, 2017

Transitioning - Elementary School to Intermediate School.

When Taylor finished the third grade, I remember feeling so proud of him and so scared for him at the same time. Since he started in the Eclipse class when he was only three years old, he had been at the school for five and half years. That is a really long time for an eight year old.

I knew the teachers and staff there and I knew they loved him and wanted to best for him. We were extremely blessed when we moved to our little town because it was the absolute best place for Taylor.

Now he was going into a new school, though. He would be in a completely new environment with teachers that I didn't know and that didn’t know him. There would be a whole group of kids coming from other schools who hadn't been growing up with Taylor since they were four and five years old. Would he be bullied? Would the teachers understand his quirks? Would Taylor be okay?

I didn't realize it until then but I was spoiled. After Taylor’s kindergarten year, I never worried as much about how his teachers or peers would treat him. I never worried if he would be ignored or dismissed. I knew everyone loved him there, but now? Now, I was scared.

A friend of mine, who also has a son on the spectrum, gave me some advice and it is the best advice I think I could have had.

It was a very simple thing but nerve wracking for me, none the less.

She suggested that I call a meeting and meet with his upcoming 4th grade teachers (he would have two), his resource teacher, his aid, his speech therapist, his principle...basically, anyone that would be working with Taylor at all. I wasn’t sure they would meet with me. As far as they knew I was just “another helicopter mom”, and I knew absolutely no one at that school. The last thing I wanted to do was go in there with all these demands and make these people dislike my child before he had even started school, but my friend said she would go with me to the meeting as moral support and that eased my mind.

Looking back on it, it is so strange how worried I was about that meeting. It would be this meeting that started my yearly teachers meeting before EVERY school year after that with Taylor’s teachers.

My advice to you?

DO THIS! There is no way the teachers can know everything about your child.
Make a list of things you think are the most important things for that teacher to know and understand about your child.

What cues are helpful?
What things are difficult?
What can cause a meltdown?
What can CALM a meltdown?
What makes them happy?
What cause them stress?

Your list could go on.

Let the teachers know that you are their best ally and that you need to know what is going on at school so that you can help them help your child.

Taylor had a notebook that he brought home every day with notes to me from his teacher. In fourth grade it was absolutely necessary because Taylor still wasn’t able to tell me about homework instructions or about field trips or money he needed for whatever. It also allowed me to let his teachers know if his day was starting off bad because his backpack strap broke or it was thundering outside.

These notes helped give a little more insight to the teachers about Taylor and it helped me to put my trust in his teachers.

It is such a small thing. You're not asking for an essay from the teachers and they aren't expecting one from you. I wouldn't advise you to write one either. The teachers time is just as valuable as yours and they have other students as well. Short and to point is enough and goes a long ways.

Will there still be bad days and speed bumps? Absolutely, but hopefully these little things will help make their school year better, for them and for you.

Thursday, July 13, 2017

One Day at a Time

Transitioning from having a child with  Autism to having an adult with Autism has been quite a journey for me.

From the time we received Taylor's official diagnosis when he was a toddler, my focus was on the task at hand. There was always a challenge in front of us and so we really never had time to think about “grown up Taylor”. We we're too busy focusing on “toddler Taylor” and “kindergarten Taylor” and “elementary school Taylor” and “Oh my God, what will happen when he goes to middle school Taylor”.

I think it was during his 10th grade year in high school that it began to sink in that Taylor was about to be in the real world. Somehow it snuck up on me and I wasn't ready.

Knowing what I know now, would I have been able to plan better for Taylor’s life as an adult?

That is something to think about and something that I HAVE thought about.

The answer is simple. I don't know.

Would I have been able to do anything else differently?

I admit that I wish I had known then what I know now. I may not have wasted that whole summer sitting in a hyperbaric chamber when he was twelve years old.  Maybe I  would not have changed his daycare when he was two years old or waited until he was five years old to teach him how to swim but overall, I don’t think I could have done anything much different because the knowledge wasn't out there. We were on our own and learning as we went.

It is very easy to sit here behind this keyboard and tell moms and dads to plan for the future of their child but in my opinion, that is much easier said than done. I mean, plan how?

The most important and obvious reason it is hard to plan their future is that every child with autism is completely different. Taylor has High Functioning Autism and that left a lot of question marks about his future. There were so many ways he could have developed and progressed (or not progressed). I soon realized that I couldn't look at how other people with the same diagnosis succeeded because, like I said before, they were all different.

Now, there are some things I could have been better prepared for I guess.  Things I never thought about when Taylor was little, like the fact that my husband and I would have to go to court to become his legal guardians as soon as he turned eighteen. When I learned we had to do this, I was caught way off guard, "I'm his mom! I don't need a court to tell me I can take care of him." Right?  Um, no. That's not how it works.  We also didn't think about Social Security for him as an adult until it was brought up in an I.E.P meeting when he was in high school. These were things that were never on our radar, things we didn't know we needed to explore. There was no one to tell us any of this so I am passing it on to you now. Now you know.

When Taylor was little, I'll admit I spent a lot of my thoughts on imagining Taylor as an adult with little to no signs of autism. I had read all the feel good stories about the autistic kids that grew up to become doctors, professors, artists and writers with spouses and happy children. I dreamed this would be my son's future, too.

At the same time, I also spent a lot of my time in those early years praying each day that nothing would happen to me or my husband because who would take care of Taylor if we were gone? I don't just mean young Taylor, I mean 40 year old Taylor. As much as I dreamed of him becoming the next Temple Grandin or Thomas Jefferson, I also worried about his future life. What if he never talked, interacted with others or was able to live independently? It was very scary to think about that and worrying about it did me absolutely no good.

So, as a mom with a two year old with autism, I focused on what I could do in that moment. First on the list, teach Taylor to talk.

Next was to teach Taylor eye contact. Then we taught Taylor how to express his feelings using his words. When Taylor finally started talking, I focused on the next hurdle, teaching Taylor how to socially interact. (We still work on that)

I had to take each step one at a time. That doesn't mean I always wanted to. It was easy to daydream about where Taylor would be in the next year. But I found that if I got too ahead of myself, daydreaming about what his life could be, I would go into that place I call the “What if” place. That “What if” place is a dangerous place for me. I would find expectations there only to come back to the real world and realize they would be unfulfilled. That was never fair to Taylor.

I needed to celebrate with him in the moment of the current goal he had achieved. I couldn't allow myself to think past the current goal, much less what we would be doing in 15 years.

We continued to focus on each moment, the task at hand that day, not the years in the future. I made sure I did everything I could to make success for Taylor a very real thing, not just something I sat and dreamed of for him.

As the years went by, each goal became a bigger one for Taylor. Soon, the goal was to graduate high school with a Standard Diploma. Something I never had time to even think about when he was a toddler, because we were too busy learning to talk and read and make friends.

Now his current  goals are to be successful at his job and to learn how to drive alone (which he is working very hard on). When he has mastered those, he will add a new goal.

Let me say this. You have one advantage that I didn't have all those years ago.

Information. Information. Information.

Use it! Research and then log that information away.

Read the blogs. Read the books. Go to the seminars.

Meet other parents with children (or adults)  on the spectrum.

Listen to their stories and use that knowledge and experience to your advantage.

Most importantly realize that one day your child will be a grown man or woman and they will still need you.

And in this moment, allow yourself to enjoy that first time your son or daughter uses their words without worries of tomorrow. Enjoy that first picture they draw for you or that new song that they learned to sign for you.

I guess what I am trying to say is that it is okay to just focus on this day. You are allowed. Be in this moment and savor all the blessings that come along the way. That's where they learn. That is where they grow. That's where their potential is discovered. In that moment with you.

Friday, May 5, 2017

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.





Monday, May 1, 2017

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.

Friday, April 28, 2017

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.