Our Autism Experience Story: A Glimpse into the Beginning of Speech

“Is it the one that was or is it the one that wasn’t?” Let me give you a glimpse into the beginning of speech for Jack-Jack. This is just a brief look at our autism experience story. Jack-Jack said the above phrase sometimes dozens of times an hour after he started to talk. He would ask this question and we would answer one or the other.

Most often we would get the answer wrong because he was looking for a specific answer. It was as if his brain was waiting for us to answer a certain way before he could move on. If we answered wrong, he would become horribly irritated with us. He said it continuously for months and months. And one day, it ended just as quickly as it started. 

Repetitive Speech and Quirky Sayings:

Through the years there have been other quirky sayings, and unfortunately, I never wrote down the phrases because I thought I would be able to remember them. Every mom thinks that and then, especially if you have more than one child, you end up forgetting who went through a particular stage. However, with autism, you go through the same stage for what seems like an eternity, and you become convinced you will never forget it.

The stages, the quirky sayings, the noises, and repetitive behavior become like nails on a chalkboard – aggravating you to the depths of your soul. If you are an autism parent reading this, you understand that phrase. Sometimes it seems like you will lose your mind if you hear the phrase one more time. And if you are waiting for the speech to come you cannot understand the aggravation because you would do anything for those words.

I have talked with other families that say their stages aren’t like that. Some of their stages don’t leave. Why is it that Jack-Jack moves on and grows, but other children don’t?  Nobody has these answers, but I do know that we have never tried to hurry him out of a stage. In our autism experience journey, we have let him stay where his brain needs to be until it works through that stage. That has seemed to help him.

Many children develop in a manner that is not considered typical. For example, most typical children start saying nouns (label words such as mama, cup, water) first. A child on the spectrum may say a sentence before saying a single word. My child may reach milestones on a different schedule or may not progress on a checklist that is considered “typical.”

Our Autism Experience Story: The Beginning of Speech

In fact, one of the first sentences Jack-Jack spoke was “Why are you trying to kill me?” Now to most parents that may not be the ideal first sentence, but it meant the world to me. What led up to those words? There were a series of events that caused a lot of trauma in a very little boy who did not speak but understood a lot about what was going on around him.

Jack-Jack had some childhood trauma at the hands of an evil dentist. I explained to the dentist that Jack-Jack understood everything that was said to him, but the dentist proceeded to ignore that and just “do her job.” She actually never talked to him, and just had the technicians yank his mouth open and insert a dental bite block to hold his mouth open. I can still remember his screams, but I believed I was doing the right thing because I knew he had an abscess that needed to be taken care, but at the end of the visit the dentist said there was no abscess. Jack-Jack, Melissa (his older sister) and I left the dentist shaken to our core. But that was not the end of the trauma inflicted upon him.

Two nights later, he spiked a fever. Jeff (Jack-Jack’s dad) and I were out of the house for a dinner. His older brother was watching him. David called and said that Jack-Jack had a high temperature with a rash on his body. I immediately knew it was the infection hitting his bloodstream. There was a need for swift action. We raced him to the Emergency Room. A pediatric doctor came to treat Jack-Jack, but he most likely had never dealt with autism before. 

I say this now because after telling the doctor that Jack-Jack understood everything that was said, he continued to talk in front of Jack-Jack, but never to him. He also repeatedly said things like, “I need to give him a shot that will hurt.” I understood the shot would hurt, Jack-Jack understood the shot would hurt, and so I don’t fully understand why the doctor felt the need to loudly repeat what he said. In fact, he said it so many times, as Jack-Jack hid under a blanket, that if it weren’t for the seriousness of the infection, I would have run out of the hospital. By the way, did I mention that this was supposed to be a pediatric doctor?

At one point, when I said I understood, the doctor said, “No, I need you to understand, this will not just hurt. It will hurt a lot. So much in fact that he may not be able to use his leg for days.” Now maybe, just maybe, a better way to handle all of this would have been to take me outside the room and explain that he “was giving him one shot that would form a bolus that would slowly dissipate over time. But while it formed that bolus it hurts a lot. And it sometimes hurts so much that kids cannot walk on that leg. But there are things you can do to lessen the pain. I just don’t want you to be alarmed.”

Learning Not Trust the Speech of Adults

Those simple, calm sentences would have gone a long way towards making this horrible visit a better one. Eventually, Jack-Jack had some teeth removed, and again there were things said that were blatant lies. Jack-Jack does not like when people don’t telll him the truth. He has such a kind heart that it greatly affects him. When he had to have extensive dental work done, we made a decision to have it done under general anesthesia. We watched YouTube videos of a hospital procedure – in retrospect they really should have done a walk-through of the day with him beforehand. They would call us back before he came out of anesthesia.

Of course, you know by now, that they did not call us back before he came to. As we were walking down the hallway to his room, we heard him screaming. This was an absolute melt-down. One that his doctor or the nurses could not have prevented, but one that his family would have been able to anticipate. You see, when he came out of anesthesia okay, the dentist was in with him. She decided to take the IV out before calling us back. She said that he was fine until “I went to put a band-aid on.”

Jack-Jack HATES band-aids. He would rather run and hid under a blanket with blood squirting everywhere then have a dreaded band-aid put on.  But, if you don’t mention the band-aid word, and just use gauze and apply pressure, he is fine. As soon as his sister held him with gauze on the IV site, he calmed down.

Life Got Worse Before It Got Better

He did exceedingly well with 3 teeth pulled and 3 crowns put on. Nothing could prepare us for what happened next. He refused to let anyone come near his head. As soon as anyone tried to cut his hair or wash his hair, he screamed, kicked, bit, and scratched. Life became worse. Much, much worse. I cut his hair in small sections after he fell asleep. He had ugly haircuts for a few years. 

But the hair washing, that was another story. We let weeks go by in between washings. The adults in the house took turns doing the hair washing. One day, it was my turn. I went up with him and started the water. We didn’t tell him that we were going to wash his hair until the end of the bath. As Jack-Jack took his bath, I sat in the bathroom and read a book until he was almost done. Then I told him I was going to wash his hair. I successfully wet his hair and was adding in the shampoo when Jack-Jack decided he was done.

But I couldn’t let him get out of the tub with shampoo in his hair, so I proceeded to use force to get him to stay. By this time, he was in complete meltdown mode, screaming, hitting, and scratching me. As I wrestled with a wet, soapy body, trying to get the shampoo out of his hair, I was losing my patience, but more importantly, I was crying and not in control of my own emotions.

Jack-Jack grabbed the shower curtain and yanked hard. The rod came crashing down on my head, and he yelled at the top of his lungs, “WHY ARE YOU TRYING TO KILL ME?” He took off sprinting down the hallway, naked, dripping wet, with soap in his hair. As I sat there, sobbing, head throbbing, water all over the entire bathroom with scratches and bruises on the entire upper part of my body, I said excitedly, “He can talk!”

And that my friends was our journey into the beginning of speech. You see, I knew that deep down in his brain, he had speech bubbling and brewing. For whatever reason, his speech only came out when he was under extreme stress. I knew when the time was right that more speech would come. 

Jack-Jack Gets His Hair Cut Evenly

And eventually we found someone who worked with him to cut his hair. Jimmy bribed him with his favorite candy, and Jack-Jack now loves to go get his haircut. And more and more speech came. But Jack-Jack still has trouble with doctors, dentists, and even talk about those events that traumatized him. I read him a portion of this story. Jack-Jack still gets scared, tries to hide, and starts sweating almost 10 years after since these events. Working through this will take years. This is only the beginning of our autism experience story. Stay tuned for more! For more encouragement, read Ten Things I Wish I could Tell My Younger Self.