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.

Your Journey is Valid

April is Autism Awareness month and with that comes all the posts and articles about what living with Autism really means.

There are some very happy stories. Those always make the news because they make people feel good. They give people the “happy tears”.

Not all the articles are happy though because for most families, autism is hard.

I have read every single article that has come across my path. I want to be connected to these other parents. I want them to know that they are not alone. I want them to know that people care, so I share all these articles and videos and do what I can to raise real awareness for autism.

I want to be aware.

You would think that since I have a son with autism that would mean that I am aware but every parent’s story is different and every child is unique.

I also have a confession to make.

For every article I read about a child with severe autism, I have felt guilt.

I mean, who am I to complain or feel like our life has been hard?

One article in particular really got to me. The author writes,

“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.”

This is a fact. This is truth and people should know about this side of autism.

I went on to share this article on Facebook and shortly after, a parent shared a comment on my post that said they wanted to scream every time they saw one of those “feel good” posts about autism because, "there is nothing ‘cute’ about my son’s autism."

I felt guilty.

Taylor does not have severe autism.

He doesn’t punch himself in the face or beat his head on the wall.

He doesn’t crawl around rubbing his head on the floor…anymore.

He is verbal…now.

He doesn’t kick, bite or hit himself or other people…anymore.

He doesn't lay down in the middle of a public place and have a full blow tantrum while people stare...anymore.

Suddenly, I felt guilty for writing. For sharing our story. Who am I to write about our autism when other parents have it so much harder than we do?

I couldn't bring myself to write for several days because what could I possibly share that would help parents dealing with so much more than me? I had nothing to offer.

This morning, as I sat staring at my laptop I still didn't know what to write. Then I reminded myself the “why” of it. Writing is my outlet, it is my stress reliever. I write from my heart and get it all out. It is our story.

I realized this. Just because our journey is not as hard as the person next to us does not make our journey invalid. It is just different.

The same goes for you. Your child may not be as severe as someone else's child but I understand that does not mean your life is roses and rainbows.

I know that you cry yourself to sleep some nights. I know you have days that are very bad.

I know you have your own fears for your child’s safety. Will people take advantage of them because they realize your son doesn’t understand that evil exist? Will they hurt him? Your son is “high functioning” but can he really be on his own, ever?

I know you have mourned the life you imagined for your child when suddenly on beautiful spring afternoon, watching your child spin and spin and spin in the swing, reality set in. It hits you hard and without warning. You suddenly understand their future will be something completely different than you had imagined for them because your child has autism. You cry while sitting on that park bench, hoping your child doesn’t see.

You have mourned the friendships they cannot make. The sleepovers they never had. The dates they never went on. The best friend they never had.

You also have those moments when you are struck by an immobilizing fear because you know your child will out-live you and then who will take care of them when you are gone?

I remember years ago, I had become friends with a lady who son had Asperger's. I met her son and was struck by how articulate he was. He could play sports with the other kids. He didn't need to have an assistant at school. He didn’t run off if his mom didn’t have his hand in a death grip. He seemed so functional that if she hadn’t told me, I don’t think I would have known right away that he had Asperger's. The way I saw it, he had it so much better than Taylor.

I was jealous. As awful as that is, I was. I prayed that Taylor's life could be as easy as his. How much better our lives would be!

Then one day I saw her in the grocery store. She had been crying. I noticed scratches all down her arms. I asked her what happened and she told me that her son had a meltdown during church. She and her husband had to take him out of the church and to the quiet room to get him calmed down. Her son was in 5th grade at the time and weighed almost as much as she did. He kicked, screamed, hit and scratched her and her husband. They had to sit on him to calm him down so he wouldn’t hurt them or himself.

She was embarrassed because it happened at church. She explained to me that she thought she knew what people were thinking. That her son was some spoiled kid that just needed to be disciplined. His autism wasn’t obvious and she felt that no one understood. In that moment, I'm sure she felt very isolated.

On that evening, she may have even looked at my life as being easier because with Taylor, everyone knew he had autism. It was more obvious and if he had a meltdown like that, people would be better understanding, right?

I hugged her neck. I didn't know what to say. I just didn’t know. She smiled at me and told me it was okay. This was her “normal” and that they would be fine. It was just a bad night.

I had held some kind of jealousy towards their life because all I saw were the happy moments and how “easy” everything was for them. I wanted that for us.

I didn’t know. I wasn’t aware.

Her son was higher functioning than Taylor, but it came with a different set of problems. Different obstacles to overcome but obstacles none the less.

I wondered how she did it and realized that she had said that very thing to me not too long before.

Autism is a spectrum.

Spectrum, by definition is “a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence:”

In other words, all of these individuals may have a related diagnosis and have tendencies that overlap with others individuals , but no two with autism are alike.

Never feel guilty for the accomplishments your child has made. Never feel guilty because your child overcame an obstacle. Be proud of your son or daughter! Rejoice and celebrate every little miracle.

Your voice is valid and so is your story. Don't be ashamed to share. Your words may be exactly what someone else needs to hear.

Do what you can to raise awareness and share all the facets of autism. Know that every voice is important. Only then will people truly understand the scope of autism and really be aware.

We are all valid.

When A Lion Roars

When Taylor was in the 4th grade we heard the term “DAN! Doctor” for the first time. “DAN” stands for Defeat Autism Now (DAN!) and was a project of the Autism Research Institute, founded in the 1960s by Dr. Bernard Rimland. DAN! Doctors were trained in the "DAN! Protocol," an approach to autism treatment which starts with the idea that autism is a biomedical disorder.

At this point in our lives we were still trying to discover the “why” and the “how” of Taylor’s autism. Was it because of the MMR shots? Was it because he had Leaky Gut Syndrome? Was it food allergies? We read everything and all it did was add to our confusion. Keep in mind, this was 2006 and there was not a lot of good information out there about autism.

Okay, I admit, I was still hoping I could find a cure for Taylor. Hell, it worked for Jenny McCarthy, right? (That was sarcasm by the way.)

First thing I did was remove all the gluten in his diet.

He was still autistic…and now he was also miserable.

I did the special home test that tested to see how high the levels of mercury were in his system.

Answer? Not very high and…he was still autistic.

I sat in a hyperbaric chamber with Taylor over an entire summer. Up to 2 hours a day on some days making my other two boys spend most of their summer sitting in a lobby playing, coloring or reading while I sat with Taylor.

Guess what. Taylor was still autistic.

So how about this DAN! doctor? We drove Taylor to a neighboring state to see what this DAN! Doctor could do for Taylor. Was there a special therapy we could try? Maybe there was miracle pill we didn’t know about.

What I know is that we had high, high hopes. The doctor sat with Taylor for over an hour trying to get to know him. "Doc" was really a kind soul, but it became clear that he had no special cure for Taylor. What he did have was more information that would help Mike and I better understand how to help our son.

"Doc" had ideas of how we could help make Taylor’s life better. Yes, he suggested various vitamins and such but the most important thing he did was teach us more about sensory sensitivity and how draining and exhausting it was for Taylor.

During our conversation with "Doc", I told him how Taylor had started to become very sluggish. He would drag whenever we would go anywhere. When he was a toddler he couldn’t sit still, but now he was the slow poke of the family. Ten year olds should not be sluggish! They should have all the energy in the world and definitely have more energy than mom!

I told "Doc" about the week before going on a field trip with Taylor. The other kids were running circles around us while Taylor walked around slowly. At one point, we came up to a table that was selling tourist items and Taylor crawled underneath it while his friends shopped. I was perplexed. I mean it was warm, but it wasn’t blazing hot. Where did Taylor's energy go? When did this happen?

After listening to my story about the field trip the doctor asked me the strangest question.

“Does Taylor sweat?”

I started to answer “yes, of course” but suddenly, I realized that I couldn’t think of one time I had seen my little boy sweat. I looked at my husband and he seemed as stumped as I was. I thought back on that day of the field trip. Taylor was obviously hot, but he wasn’t sweating. The other boys in our group were. I remember their hair stuck to their foreheads, the beads of sweat on their upper lip, but not Taylor.

We live in Alabama, probably one of the most humid, hottest and miserable places during the summer. If you have been to Alabama, you will understand. Even if it is 70 degrees outside, you will find yourself in a full body sweat because the humidity is 200%.

To not sweat? What the heck?

I sat there thinking of all the times in the recent past that we had been playing outside and his brothers would play and sweat like crazy, but not Taylor. If we went to the playground, he would climb to the top of the slide/treehouse and just lay in the shade at the top like he was exhausted.

I thought about him playing football in the backyard with his dad and his brothers. He would play only a few minutes before going and sitting down on the porch. Something my husband and I mistook for disinterest.

Taylor wasn’t exhausted or disinterested, Doc explained, he was just trying to find a way to cool himself down.

“Imagine,” Doc said, “that you are walking in a jungle. All of a sudden, you hear a lion roar. What happens? Your heart starts beating faster, your ears seem to turn up the volume and suddenly you can hear everything around you. Your skin becomes very sensitive, maybe the hair has even stood up on end and YOU STOP SWEATING.”

“Now, all of your senses are on high alert. Your body is in survival mode,” the doctor said. “This is what it is like every single day for a lot of kids with autism.”

I was stunned. What a great way to explain this to me. I felt I had a better understanding of what things may be like for Taylor. No wonder he had melt downs. How stressful all of this must be to him!

By this time in Taylor’s life, his melt downs happened less and less. He had begun to learn how to handle stimulus overload. He still had his days but after hearing this analogy, I was even more proud of how well Taylor was doing.

We still had a problem to solve, though.

Taylor was getting overheated too easily. This explained the mystery of why Taylor could stay at the pool all day but only a half hour at the playground. Because he stayed in the pool and remained cool.

So. What do we do about this?

The doctor suggested that the best way was to teach Taylor’s body how to sweat.

Oh. Um. How do we do that exactly?

He suggested maybe sessions in a sauna. I laughed pretty hard at that. There was no way Taylor was going to sit in a sauna for any length of time. Oh my God, just shoot me now!

The other suggestion was to put Taylor in sports so he would exert himself.

Well, we had already tried sports. Taylor played Upward Basketball and Upward Soccer but team sports weren’t for Taylor. I mean, he had fun but he didn’t exert himself. He wasn’t competitive and was not aggressive. Basically he would wait until someone tossed him the ball and wasn't interested in the "winning" part.

We had him in Taekwondo, but that didn’t seem to be enough to get him sweating but I was determined to fix this for him.

It would be 2010 before I saw Taylor really sweat for the first time. I had started doing CrossFit at the karate school and thought, “maybe this could help Taylor” and enrolled Taylor into the CrossFit Kids class.

It was after Taylor finished his second class of CrossFit Kids that it happened. I walked up to high five him and saw it! In fact, when I close my eyes, I can still see it.

On his temple, above his left eye there was a drop of sweat rolling down toward his cheek.

Was I really seeing this? I started jumping up and down I was so excited! I know his coach thought I was crazy, but I explained the whole sweaty thing to him and he joined my celebration.

Who would have thought that seeing a child sweat could cause so much joy?

After that day, it just got better and better. Taylor had begun to sweat. FINALLY! Thank you CrossFit!

Taylor still does CrossFit with me. He has worked out with me since that day in 2010. I love seeing him active and you know he is getting serious when he takes his shirt off.

For me, Taylor taking that shirt off during his workout means more to me than anyone in that gym realizes. It means that his body is sweating like its supposed to do.

No, we didn’t find a cure for autism but Taylor was able to teach his body the proper way to cool down. He overcame one of the side effects of having sensory sensitivity. One in a list of things he has overcome.

I think that is pretty amazing.