Part 4 - A Day in the Life of Paxton
This is my son, Paxton, and this is our beautiful life together.
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| Paxton loves to ride the bus! |
I am so thankful for Paxton's school. His teachers and therapists and aides alike are amazing and treat Paxton as an individual - not just another kid in the classroom.
Every kid relies on a routine; so do many adults. But person's with autism REALLY rely on routine. Daily rituals have to be orderly and predictable, or it can cause mega outbursts, meltdowns or other negative behavior. Paxton has gotten way more flexible over the last year, but still needs to have as much predictability in his day as possible. Sometimes we have to use a picture schedule at home to help him to know what we are doing now and what we will do next. Example, "First we will brush our teeth, and then we will change our clothes."
We have rituals for getting on and off the bus. We run to the bus and jump off the bus. Everything is a game! I love it! When he gets home from school, we tell him to take his backpack and coat off and put them in the chair. Then we go over what he learned at school.
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| Going over Paxton's daily school schedule |
We use a lot of pictures in our house! Pictures help bridge the gap between Paxton's communication issues of being able to speak and knowing what to speak. His speech is rather delayed and he doesn't speak clearly for his age, but he understands a lot more than he is able say for right now.
I will use lunchtime as an example. "Paxton, what do you want for lunch?" Sounds pretty simple, right? Not in our house. That is a pretty complex question for Paxton. He understands his name and kind of understands the "what do you want" part. Think of the word "lunch." Lunch, breakfast, dinner, snack, food, meal, eat. You don't realize how complex the English language is until you see how many words share the same meaning. Think of the numerous ways you can answer that one so-called simple question.
This is where pictures come in handy. I will lay out two or three pictures of options for meal time, along with a picture of a person saying "I want" beside the food pictures. Instead of Paxton moaning "uuuuhh" or getting frustrated if I ask him what he wants for lunch, I will lay out these pictures, and then ask him what he wants for lunch and tell him to use all of his words. "I want da-deggi!" (spaghetti) This gives him a choice, but not so many choices to overwhelm him. And most importantly it gives him a voice!
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| Paxton chooses spaghetti for lunch! (and grapes) |
There is so much to see in this picture below. To the naked eye you see just a boy eating his food on the couch. (Don't ask. Every day I choose my battles and his eating at the couch is not one of them this day.) But to me, I see my kid has used words to pick out his meal. I see he is eating all fairly new foods, all in one meal, and he is eating a huge variety of textures and flavors! This is a big, big deal to kiddos with sensory processing disorder. Spaghetti with meat sauce and grapes. We've got squishy, chewy, and saucy in one meal. Plus he is sprinkling parmesan cheese on top! Like he's touching the cheese with his hands and not freaking out over the mess and EATING it! Victory! Do you know how many months it has taken us to get him to even try pasta or grapes?
A lot of times is takes several months for Paxton to get the hang of a new food. It takes a lot of practice and patience and bribing and cheering and applauding and high-fiving.
This day I had Paxton try a slice of cheese. No. Not a slice. Just a tiny nibble of cheese. We use pictures again to help him understand that there is a beginning and, more importantly to him, an end to the task we are asking him to do which is going to take him outside of his comfort zone.
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| Mom says, "First cheese, then a fruit snack." |
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| Pax is like, "I don't think so!" |
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| How about if I just touch it to my chin? |
Sometimes just getting him to touch a food to his chin is cause for celebration. So I gave him one fruit snack for touching the cheese to his chin. Then I made him touch it to his lips for another snack; then he had to touch it to his tongue for another snack; then put it all the way in his mouth and chomp it!
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| Closer... |
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| Closer... |
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| Nope! I just can't do it, Mom! |
I love when people try to tell me that if he gets hungry enough he will eat whatever I put in front of him. I love how people turn their nose up at what is basically bribing him to try new foods. When I say "love" I really mean "hate." For a kid with severe sensory issues, your genius ideas are just not that genius! Actually, he won't eat. He will go without eating before you make him eat a whole slice of pizza without easing him into a new food. Are we bribing him? Technically, yes. It's a lot more than that, though. Using First/Then scenarios give him the structure that he needs to help him to know there is an end to this task and he can move on to something more desirable once he finishes.
"Paxton, are you done with your spaghetti?" He says "all done" or "yes." I take the plate away. He squeals, "I want spaghetti!!" I stand their confused why he told me he was all done and got upset that I took his plate away. He stands their equally confused as to WHY I took his plate away when he wasn't even done! It's like the Tower of Babel all over again. I'm speaking Momish and he is speaking Paxtonese.
If Paxton asks me a question and I answer "yes" or "no", he understands what I mean. But if I ask him a question, for him to answer "yes" or "no" is quite a different story. Here is where those pictures come in handy again.
I have a bag of various small toys. Toys that I know he will love and toys that I know he won't care for. I have two cards: "YES" and "NO" with a smiling and frowning face respectively. Here we practice on answering with a simple "yes" or "no."
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| "Do you want the airplane?" "Yes!," he says! |
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| 'Do you want the ball?" "NO! NO! NOOOO! Bye-bye ball!" I wait until he can calmly tell me just "no!" |
You see, Paxton would eat the same breakfast, lunch, and dinner every day. He would play with the same toy for long periods of time. Psychologists say this is because he is getting stuck in these happy moments. Oatmeal makes him happy. Planes make him happy. Jumping off high surfaces makes him happy. Paxton gets caught up in these things that make his world happy and predictable and he doesn’t know how to bring himself out of the moment to explore other things of this world that could make him just as happy and comfortable.
I know my opinion is biased, but Paxton is extremely smart and so
witty. It is ironic to me that he has developmental delays, yet is so
smart and learns very quickly. How is that possible? It is
because he learns very, very differently than most. The trick is
figuring out how to teach him and how to communicate in a way he
understands. I can't say enough positive things about the therapists and
teachers we have worked with over the last year and a half. It is a
very humbling experience to have to say that you need hired help
to teach you how to communicate with your own child.
These are the two most important things I'VE learned as an autism momma:
- Autism isn’t necessarily a bad thing. Autism does not mean there is something wrong with someone. It means they’re different. And that’s a good thing! How boring this world would be if all of us were “normal” and “ideal.” I don’t want my boy to be normal; I want him to be extraordinary!
- I do not let autism be a crutch or an excuse to not expect the best out of my boy. He is not disabled. He is not unable. He is able to do all things through Christ who gives him strength. (Phil 4:13)
More than learning to love cheese or how to properly answer “yes” or “no” to my
questions, my number one goal is to make sure Paxton knows the name of Jesus
Christ. I want Paxton to have Christ in
his heart because without Him we are lost.
Without Him we are hopeless.
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| This boy thrills his momma's heart! |
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Autism from a Mom's Perspective:
Part 1 - Defining Autism
Part 2 - Frequently Asked Questions
Part 3 - The World Through Paxton's Eyes
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