Early intervention, Love and Acceptance.

Mrs. Ashley and Taylor on a field trip to Baker's Farm.

Soon after our meeting with the psychologist and receiving the “Official/Unofficial” diagnosis for Taylor, (I refuse to call this an official diagnosis and you can read about that horrible experience here) we continued to seek out people that could possibly understand what we were dealing with and help us determine what steps we should take next.

There weren't many people to talk to and for the most part, we still felt like we were on our own but we were determined. It also helps that I am a pretty stubborn woman. This was my child and I was ready to kick autism on its butt, whatever that may mean.

Taylor was already receiving speech therapy so we were ahead of the game on that but we understood that this may be something we would be dealing with for a lifetime. Mike and I continued to pray that this was just a developmental delay, not autism, and that Taylor would grow out of it like my friend’s son did. I think every parent who has a child with autism prays this prayer but we knew that we still had to be proactive. We wanted Taylor to have as much help as we could get for him. We didn't know much about autism but we knew we weren't going to just sit around and just give up without trying everything in our power.

A good friend of mine told us about a program at an elementary school in the town next to us that sounded perfect for Taylor. It was called the Eclipse Program. The class took children, ages 3 years – 5 years, and was an even mix of Special Needs children combined with Typical children. The one good thing about that doctor’s diagnosis was that it got Taylor in this class in the middle of that school year without have to go on a waiting list. A diagnosis is so important to help you get the help you need!

When we began to accept that Taylor had some form of autism, my first thought was “I should have kept him home. I shouldn't have put him in daycare.” I have said it before, but as a parent I will always wonder what I could have done differently.  This was one of those things. Daycare, as it turned out, was something that Taylor benefited greatly from. Although staying home with Taylor was not financially possible for us at the time,  looking back on it I realize that daycare was the absolute BEST place for Taylor to be when he was a toddler.

Why?

Well, where else was he going to learn how to be around his peers and learn to communicate with them? Where else would Taylor learn how to engage with other children and play with them without judgement? Toddlers don’t care if you can't talk, they just accept you for who you are. Daycare proved to work as a social therapy process for Taylor. He wasn't good at those social skills but he was much better than he would have been if I had hired a nanny and kept him at home.

I realize that this is not the case for all children with autism but for Taylor, daycare was very helpful. The Eclipse Program was even better! As soon as the Eclipse Program accepted Taylor, we pulled him out of daycare and he started going to school at Creek View Elementary. Taylor went to this school 5 days a week, 8:00-2:00. They let the Eclipse class out before the “big kids” got out of school to help keep the stimulus and chaos for these kids to a minimum. You don’t want a 3 year-old being run down by 3^rd graders regardless if they are special needs or not.

This Eclipse Class was such a Godsend and I believe this program should be in every single school! The class had one teacher (Mrs. Ashley is AMAZING!) and two teacher’s aides. This broke down to a student-teacher ratio of 4 to 1. Taylor received constant therapy through the class time work and games they played. He was also pulled out of class several times a week for speech therapy and occupational therapy. The typical kids worked as role models for the special needs children. Taylor was still learning how to act socially and if he had been in an environment with only children on the spectrum, that's the only behavior he would have learned. For the typical children in the class, they learned acceptance and patience and how to help their friends.

Taylor also learned how to charm the teachers, the aides, the office staff and even the principal! By the time he graduated from the Eclipse Class  when he was five, I think he had every teacher in that elementary school wrapped around his finger. He was adorable and it was ridiculously funny! It was also amazing! The progress we saw with Taylor during this time was phenomenal and the love the teachers had for him was unmistakable. It was for these reasons that we sold our house and moved so that we could live in this school district. The last thing we wanted to do was remove Taylor from an environment where he was accepted and loved and where his teachers expected the best from him. They saw his potential and they worked hard every day to help Taylor improve.

I know we are very blessed to have had this experience with the school system. I have heard some very sad stories and I wish every child had the kind of support system Taylor had (and still has). THIS is the way it should be! What makes me sad is that the school system ended the Eclipse Program a few years ago.  Even though Taylor was already in middle school when this happened, the sadness I feel for the children that have been denied such an amazing service is impossible to express.

Another amazing thing about the Eclipse Class was that it was free for children with special needs. This was SO IMPORTANT for us. We were young and financially strapped, still on that Ramen Noodle budget it seemed, borrowing from one credit card to pay on another. There was no way we could afford to pay even $40 a session with a speech therapist three times a week. Education is free for typical children, shouldn't it be free for our children with special needs? Luckily, we lived in the right place at the right time, but even so, we wouldn't have known about the Eclipse Program if not for my friend who knew about the program because she was a teacher.

One of my goals through writing this blog and my book is to bring a greater awareness to how important programs like this are to our children, the "special needs" as well as the '"typical" children. One of the reasons Taylor has done so well in school is because the "typical" kids in he school accept him. He's just Taylor to them. He has had friends through the years that have stood up for him, taken care of him and just been his buddy. Acceptance goes so much farther than you would think. The kids that surround and love him own my heart!

When I was a kid, the Special Education class was separated from all of us "regular kids".  We never crossed paths and if we did see them, we had no idea how to interact with them. I remember as 6th grader actually being scared of them because I just didn't understand. I remember one time in particular. I was checked out of school early and there was a girl with down syndrome sitting on the front steps of the school waiting to be picked up because they got out earlier than we did. When I walked by her, she reached out to grab me and said something I didn't understand. I was terrified and ran down the steps to my mom's car.

I remember this so well and when I look back on this it makes me incredibly sad. She just wanted to say "hey". She may have just wanted a hug or maybe she wanted someone to sit down with her while she waited for her mom. It is because of this girl in 6th grade that I had made the decision when I was pregnant that my child would be in an inclusion class. I never wanted my child to be afraid of someone with special needs. I wanted them to be the friend they needed. Little did I know that my child would be the one who needed acceptance.

I am also forever grateful for the teachers and care givers he had in his life through this Eclipse Class. I truly believe that Taylor would not be where he is today if it had not been for the Eclipse Program and his teacher Mrs. Ashley, his aides, Mrs. Joyce, Mrs. Tracy and Mrs. Dee, and his speech therapist, Mrs. Liddell. I hope they know how much they mean to me and I pray that other parents will have someone like these ladies in the lives of their children.

Our children deserve that.

From the bottom of my heart, 

Thank you.

Dan Marino and the Information Highway

In 1994, this commercial for the “Information Highway” had me losing my mind. I remember watching a young Anna Paquin being kind of creepy and then looking at my husband and saying “What the hell does she mean?!” I couldn't stand the commercial because I felt like I had just watched some clip from a 70’s hippy movie and must be lacking the drugs to understand it.

What was this “Information Highway”? I would soon learn that 1994 was the beginning of the future with the Internet, AOL and Yahoo (Google would come much later) although I really wouldn't get the full comprehension until five years later.

After Taylor’s first diagnosis, I began to explore this new world of the internet, complete with Yahoo searches and chat rooms, trying to find as much information as I could. The internet was nothing like today. Only people in their 40’s and older can really appreciate what it means to spend hours trying to download a file. That being said, this was a whole new world of resources available to me and I spent a lot of time on the internet just trying to find someone who was going through the same thing we were.

I met my sweet friend, Mary in a chat room on Parent’s magazine website. Both of us were dealing with the same issues with our 3 year-old sons. I had finally met someone who got it! She understood my situation and my fears. We became each other’s support system in those early years. Although we lived in separate states, this internet thing made it possible for us to connect and I am so grateful for that.

Then there is Dan Marino.

I have been a Miami Dolphins fan since I was fourteen. I am from Alabama and we do not have an NFL team but every Sunday my friends and I would get together to watch NFL football. I had to choose a team, right? My reason for becoming a Dolphins fan was perfectly reasonable… I loved their uniform colors! It only took watching a few games though before I knew I had chosen the right team. Dan Marino was amazing!

Over the years, I became more of a Dan Marino fan than a Dolphins fan and watched every special on him that I could. Okay, I may have been a little obsessed.

After Taylor’s diagnosis, I remembered back to an interview with Dan Marino when he talked about his son, Michael who has autism. I began to search for more information on this to see what I could find. What did Marino and his wife do? When did they find out their son had autism? What was their son like now?

This search gave me a job to do but more importantly I think, I began to feel less and less alone. I know that is silly, but here was my football hero since I was a kid and yet we had this in common. I became aware instantly that autism was not prejudice. It doesn't matter what you do for a living, who your parents are, what kind of money you make, what color your skin is. Autism doesn't care.

In my on-going search for answers and solutions, I came across a transcript of an interview with Marino where he talks about the first signs of autism that he noticed in his son. The more I read, the more it sounded like he was describing Taylor! In this transcript was a section where they talk with one of Marino’s sons, (he has six children).

It was reading this part, this insight by his fourteen year-old son, which gave me the most hope. When I started reading, I thought it was his older son they were talking with.  Then, a few paragraphs in, his son says “People ask me all the time what it is like to have a brother with autism. They are always surprised when I explain to them that I am the one with autism.”

WHAT?!

I read it again. This was Michael Marino?! Now I was REALLY intrigued! My very first thought was “he can talk and he can talk well!” Could this happen for Taylor?

As I continue to read, I was fascinated, holding onto every single word. Michael then said something that would stick with me and help me with Taylor for years to come.

He said that he remembered when he was six-years-old and his mom would always demand that he look at her while she was talking.

I did this to Taylor all the time. Most parents do, no news there, right? Courtesy and respect. It’s important.

Then he went on to explain that all he knew was that he couldn't do it. He could look at his mom or he could listen to her but he was unable to do both. More importantly, he did not have the words to explain to his mom that he could not do both.

Oh WOW! This was LIFE-CHANGING for us in the South household and after we tested this theory out, immediately changed the way we talked with Taylor. First, I experimented just to see. I would have Taylor look at me while I was talking to him and ask him a specific question then I would wait until he looked away and ask him the same question.

Nine out ten times Taylor only responded when I allowed him to look away.

This was just the beginning of things but it gave me hope. It was a solution to a problem. I am a fixer and I felt like I had just accomplished something HUGE!

So, Dan Marino, in case you EVER come across this blog, I want to thank you from the depth of my heart. Thank you for sharing your story. Thank you, Michael for sharing your story. You both changed our lives and I am forever grateful.

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!