Violet, Dash and Jack-Jack

 Violet: Normal? What do you know about normal? What does anyone in this family know about normal?

Helen:Now wait a minute, young lady…

Violet: We act normal, mom! I want to be normal! The only normal one is Jack-Jack”. 

(Movie lines taken from Imdb: Walt Disney’s The Incredibles)

Cast of Characters:
Jack-Jack is a 10-year old little boy with autism
Helen: Me
Violet: 21-year old sister
Dash: 12-year old brother

“What does anyone in this family know about normal?” What is normal anyway? Jack-Jack turned 10! He looks normal on the outside, and from time to time he acts normal. But most days we live with pandemonium. Granted, the chaos is less than it used to be. I’m not sure if we learned how to minimize the meltdowns, or he is acquiring skills to live with us.

He developed in a regular manner. He crawled, walked, jumped, dressed himself, and ate at the typical ages. But, he wouldn’t talk. And as long as he was in the safety of his home, everything appeared natural. But there were signs that we weren’t in Kansas anymore. He was an escape artist, and if given the chance, he would run and not look back. The rest of us became fearful of open spaces. I became too tired to attend the other sibling’s baseball games or soccer games. I was 40-something and couldn’t manage the stress of taking him certain places. It was easier to stay home. Church…it was hard to hide that we weren’t normal. Plus the meltdowns afterwards were too awful. Well-meaning people touched him, or said “trigger” words. I didn’t blame them, but I couldn’t continue to go and deal with the aftermath.

If it was just words, it would be easier. As he ages, he has learned what a few of his trigger words really mean and they don’t affect him anymore. But any words dealing with anger, pain, death, sickness, injury, or doctor, we circumvent. We spell them or use other phrases. The good news is that he is beginning to spell. The bad news is he is beginning to spell.

Not only is he learning to spell. He is learning to read. He is learning to respond. Sometimes those responses are movie lines, and sometimes they are little-boy generated responses. With those responses, he makes us laugh, and sometimes he makes us cry!

The damage done by the squirrel.

When he didn’t talk, we had to guess why there was a meltdown. At about age 4, he started saying nouns. Eventually, he started saying verbs, too. Unfortunately, there was no conversation. The great news is Jack-Jack now converses with us. As I sit here typing, a squirrel is eating our fall decorations on the front porch. He is talking to the squirrel. “Go squirrel. Stop eating all the corn. I’m chasing the squirrel. Hey, Mom, does the squirrel eat the pieces of the corn outside?”, and I respond and smile. Life is normal for a brief moment in time.

I remember after he started talking, but there wasn’t conversation, there were just words. A floodgate of words opened up and spewed out of him. We were trying to conduct a 4-H meeting and he wouldn’t stop. He just continued to regurgitate words. I call it regurgitate because he mainly said phrases he heard in movies. All I could think to say at that moment was, “We prayed for him to talk.” We pray a great deal around here. It keeps us sane, humble and thankful for what we do possess.

Prayer is absolutely the only thing that enables us to live through a day filled with repetition. When we start something, we keep doing it………….forever!!!! I say, “I love you, Jack-Jack” and he responds “I love you more”. If you have ever enjoyed the movie, Tangled, you would know that my response has to be “I love you the most”. I did it once, and now it is forever. The forever thing, it actually isn’t; it just seems that way. We call them stages. Just when it seems like you can’t handle repeating the same phrase, or doing the same thing, or watching the same movie, over and over and over and over, he is in a new process of development and each phase takes us into a new level of normalcy or chaos.

As a result of looking normal, well-meaning people who see us and witness a melt-down will say, “You should…” Fill in the blank with your thoughts when you see a child misbehave…Punish him, take away a privilege, not let him play video games, etc. Frequently, the thing people think should be removed is literally the thing holding this crazy life together. For instance, sometimes (really a lot of the time) he plays with my cell phone when we are out. It is a coping mechanism for him. He can tune out noises and lights and people. I know if you are reading this and a Jack-Jack lives in your house, you understand. And because Jack-Jack looks normal, outsiders don’t understand.

Jack-Jack

There are clear advantages to looking and sounding normal. People treat him just like any other child. However, the clear disadvantage to looking normal is that people treat him normally. We can’t have normal with dogs and cats. We’ve owned dogs, and we have always had goats, chickens, and pigs. Family members have always had dogs and cats. At some point, he became terrified of animals. Did a dog knock him over? Did he watch something on TV that scared him? Did he finally develop enough fears? There is even thankfulness with the development of fears. That same anxiety prevents him from running out in the street or taking off at a baseball game.

It is real terror for him when he spies a cat or dog. He screams, “Kill the cat”, or “lock up the dog”, when we walk into a house with pets. Family and close friends know and put their animals away. I am forever thankful and grateful for them. It removes one more layer of craziness.

However, Violet and Dash want a dog. Violet has convinced Jack-Jack that he wants a dog, and Helen knows that Violet will help Jack-Jack face his fear of dogs. Helen isn’t too sure about bringing more chaos into the house. I expect Violet and Dash will win–they deserve normalcy. Jack-Jack will learn to live with a dog. Helen will learn to live with a new type of chaos.

Thanks, Patty @ A Mother’s Random Thoughts

Part 2: Why Walt Disney World brings Normalcy to Our Lives!

Sources:  http://www.imdb.com/title/tt0317705/quotes

4 thoughts on “Part 1: Autism – The Normalcy of Chaos”

  1. Roxanne Lawdonski

    Levi had run away at 2 when we were all outside giving the puppies a bath. He walked far up the road and was walking upstairs to a house. He had 2 older brothers who played baseball. I tied a 30 ft rope to the back of his overalls and took him to the games. He would walk to the end of the rope & throw his ball, or he would be crawling around on the bleachers spilling peoples drinks dragging the rope across them.

    1. Scary to lose one. Jack-jack would run at baseball and soccer games. He would laugh when anyone would try to catch him, and he was so fast.

  2. Thank you for the hugs! We need those the most. I am very thankful for the progress Jack-Jack makes. Friends and family noticing the progress and commenting is very encouraging. It says that I am not just hoping there is progress. I never compare today with yesterday because that is too discouraging. I compare today with last year!

    I follow several families on Twitter that have life much harder than I do. My heart goes out to them. Some people have absolutely no support system – imagine never having a date with your spouse because one of you always needs to be there.

  3. Jennifer Humphries

    Patty what a wonderful post. Thank you for sharing this peak into your life. Sometimes as outsiders looking in we don't know what to say or do for friends and family members dealing with challenges. Sharing things like this helps us to understand. Hugs to you and your sweet family.

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