That Tuesday in the hospital… #TDGAP #autism stories

Things Didn’t Go As Planned Autism Stories

 

You have a lot to sit and think about when you spend the night in the hospital, like I did last week.  How did I get here? What will I do if they find something wrong? What do I need to do to not be in this spot again? What would happen to my family if I don’t fix things?

I’d like to say I figured it all out laying in the bed watching Hulu until about 3 am, but I didn’t.  The facts are these, over Thanksgiving Break doctors think I had a heart attack.  The reason I had been nauseous, not eating, and vomiting, that was stomach ulcers.  Later the next day, they took me to do a special CT of my heart and lungs. The point was to determine what happened,  and is it going to happen again?  If my heart was okay, we could begin treating the ulcers.  I was supposed to have the test that morning, but didn’t until almost one o’clock that afternoon.  I couldn’t have the test until my heart rate was below 60 and stayed that way for a significant amount of time. They administered meds that were supposed to slow my heart down. That didn’t work. Why? Because like most school principal I was laying there in the bed connected to all kinds of machines and still had my phone on and up.

 

The doctor, my wife, and nurse determined the cause of my issues. Stress.  I let a lot of things get to me.  In fact, I describe my work style as someone who passionately attacks their job with a reckless abandon of concern for their own body a’la Mick Foley. So, um… that has to stop.  I am not going to say you shouldn’t be passionate about your work. Do that! You have to be passionate but focus that passion and energy.  Basically, be selective over what we stress out about or care about.  I have been reading a book, by Mark Manson, that talks about what we need to stress out about. It discusses developing your values, the things that are most important to you. Think about what is most important to you and be passionate about those things. See, that’s easier said than done. We get bombarded by so many different things all day from social media, television, and other media. That makes it ROUGH to try and stay focused on what matters. But knowing your values has merit and will impact how you perform at home and at work.  I told you this story to tell you this one.  Give me a moment to Six Degrees of Separation the two together to make my point.

 

My Assistant Principal asked me to answer some reflective questions about her for a class she was taking.  One of the questions said, “What are some ways she could improve as an administrator?”   Most of the time when posed with this question it gets answered the same way.  Figure what your weaknesses are, and do your best to build efficacy in that area. I say, PASS, that’s not the best way to improve as an administrator.  For my assistant principal, I said,”Skip your weakness and focus on your strengths.”   Spend time coming up with a list of values that really really reallllllly matter to you. Without a strong list of values or beliefs you will come to school each day, run your building, but not getting anywhere.  It’s like being a hamster on a wheel. You will work hard and run down.

 It took me five years as an AP and two years as a Principal to start really narrowing down a list of things I valued.  This is super important.  If you don’t know what you value, you will spend your days caring about too many things.  If you give an  “OH FUDGE” (Shameless Christmas Story Reference) about too many things you will burn out, not be effective and find yourself strapped to machines in a hospital, on a Tuesday afternoon, worrying the SNOT out of your wife.

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Once you know what you value, work hard each day to model those things. When you do, that’s when you will best be able to inspire and lead others.  People who have the same values as you will gravitate towards you.  Those are the people you want on your team.  So to sum up.  Know what to give a fudge about.  Write them down & do your best to model them each day. If it ain’t on that list or connected to it somehow, let it go.  Once, you have your team take time to learn as much as you can from them. Play to your strengths, and surround yourself and build your team with people who have the same values as you. (Not necessarily the same skills.)  Have a team with a variety of skills learn from them and delegate to them.  It will make your job easier, move your team forward, and keep you from stressing out.

 

Later Tuesday afternoon, I went to have a CAT scan of my heart and lungs.  Truth be told it was about four in the afternoon before we received the results.  I was sweating bullets, thinking that it was bad, they are developing a plan, and I may have to have surgery.  The scan came back clear.  My heart was running like a machine.  The issue was stress.  I have to find ways to relax and calm down.  We started treating the stomach ulcers with a ton of meds.  I am hoping that if I work on chilling out and take the medicine like I’m supposed to, the ulcers will improve or go away. I really do not know how that works.  I am not a scientist.  All I know is I have to take a ton of antibiotics that require me to eat.  When I eat, I throw up. The nausea and the vomiting everyday are improving.  I am hoping some of what I said makes sense and that someone can learn from my mistakes.  It may not always feel like it, but we matter to a lot of people.  When it feels like you don’t, remember someone’s therapist knows all about you. So take care of yourself. Focus on what’s important, relax, and surround yourself with things that make you happy.

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#MTFWBY


TP

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The Secret Word is Play!

I am no scientist. I have no white lab coat. I am not going to quote a bunch of data. I am just a dad and an educator trying to learn how to help kids.  Kids can learn while they play. Today at school while my son was playing, we had a major break through.

My son, The Dude, has autism.  He would fall on the more severe end of the autism spectrum, but is still quite high functioning. He can answer some questions in context. However, he is still working on initiating appropriate conversation on his own. One of his favorite actors is Pee Wee Herman. We have DVDs of PeeWee’s Playhouse. We have watched his Christmas special on Netflix more times than we watched “It’s a Wonderful Life.” He thinks Pee Wee is just hilarious.  McKade found a toy pop up tent used by classmates to read and or calm down in. He took some paper, tape, crayons, glue, and a little help from his teachers and transformed that tent!

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World, I would like you to meet Mr. Tent. A walking talking Pee Wee’s Playhouse piece of furniture come to life!  Now, this may not seem like a big deal to you, but this is HUGE! Thanks to this opportunity to “Play” or “ACT” The Dude becomes Mr. Tent. Mr. Tent has his own voice and personality.  You can ask Mr. Tent questions, and he will answer you. He will even start his own conversation with you.  He can tell you how he is feeling that day. He will tell you he likes climbing on the monkey bars. He even will remind you to wear a helmet when riding a bike.  Mr. Tent was even able to answer questions about a story “HE” read in class recently.

Just by taking a few minutes to encourage him to play, his teachers helped him stumble on an interest based outlet to communicate in ways he never has before!  So thank you awesome teachers. Thank you Pee Wee’s Playhouse! The Secret Word is PLAY! Any time you hear the secret word scream real loud!

Mr. Tent Drinks Water

Click the link above to watch Mr. Tent come to life!

May the force be with you,

@JediPadmaster

#ManvsAutism #ParentLikeAJedi

 

The Almost True Adventures of Tytus the Monkey #WorldAutismDay

This is a story I wrote to be made into a picture book. My wife and I are still working on the illustrations. It is based on mostly true events. Taking our kids with autism and our monkey to the store is always eventful.  In honor of World Autism Day we wanted to share this story with others!
Thank you for reading and sharing.
TP @JediPadMaster

 

People said that Tytus Monkey was evil. He was always getting into trouble.

 

It could have been because Tytus was irritated by so many things.

 

He was afraid of bugs, especially cockroaches.

He couldn’t stand it when people were singing.

Plus, he had an utter distrust of all rhinoceroses.

 

Tytus didn’t detest everything. He loved the three children who had adopted him as their own. They taught him so many things.

 

The yellow-haired girl taught him to read.

The red-haired girl showed him how to paint.

The dude helped him roller-skate all through the house.

 

They had many things in common too.

 

All four of them loved eating waffles.

They loved climbing high.

They all loved painting.

They all loved swimming.

Most of all, they loved going to the store.

 

Tytus loved walking up to the big store to see the way the doors went Woosh!

Tytus loved how everyone had a job at the store. The red-haired girl and yellow-haired girl had to hold the cart, while the dude rode inside. It was Tytus’s job to ride underneath the buggy while the Boss Lady, the three kid’s mother, did the shopping.

Everyone was content.

Everything was great…until it wasn’t.

 

The lights were too buzzy. The registers were too beepy. The broken wheel on the cart was too bangy. Tytus knew what was coming next. The red-haired girl started to get upset. Her hands started flapping. Her eyes started blinking, and she began to cry.

 

“I would never let my daughter act like that in a store!” said a lady in a blue dress with white hair. Tytus didn’t like this lady. She smelled like cheese.

 

“She has autism,” said Boss Lady. “She gets overwhelmed and can’t tell us why because she can’t talk very well.”

 

The Lady Who Smelled Like Cheese was not a nice person and replied, “Just because she can’t talk doesn’t mean you can’t teach her some manners.”

 

Tytus didn’t always understand why people said what they said, but he knew that the Lady Who Smelled Like Cheese was being mean to the Red-Haired Girl. That bothered Tytus more than bugs, singing, and rhinoceroses.

 

Tytus thought about what the Lady Who Smelled Like Cheese said, and it gave him an idea.

“I can’t talk, but I can definitely teach that lady a lesson,” thought Tytus.

 

Tytus crept over to the Lady Who Smelled Like Cheese’s shopping cart and loosened the top on her dish detergent, just enough that it started to drip, drop, and plop onto the floor.

 

When the Lady Who Smelled Like Cheese put one foot into the soapy puddle, she slid all the way across the floor.

She fell into the cage-free eggs.

The eggs tumbled onto a store employee carrying a box of Granny Smith apples.

The store employee dropped his apples, and the box went CRACK as it exploded on the floor.

The Boss Lady stumbled on the apples and lost control of her shopping cart. The cart, with the dude inside, collided with the organic milk display.

The tall milk tower started to lean. It teetered, it tottered, and it toppled over the nearby soda display.

A gigantic milk and soda tidal wave covered everyone. The entire back of the store was a slippery, gooey, bubbly mess.

 

Tytus thought it was hilarious…until it wasn’t.

The store manager charged down the aisle like an angry rhinoceros. The Boss Lady was coated in eggs. The Lady Who Smelled Like Cheese looked like a volcano ripe to erupt.

 

Just before everyone’s tempers detonated, the red-haired girl walked over to the egg-soaked Lady Who Smelled Like Cheese. She grabbed the Lady by the hand and helped her back on her feet. Then the dude started to put all of her groceries back in her cart. Next, the yellow-haired girl grabbed some paper towels and started to clean up the mess. Slowly, all the people in the store started to clean, talk, and laugh about what had just happened.

 

The red-haired girl may not be able to speak, but she taught Tytus a lesson that day. If you are out in the world and can’t find a nice person, you should be one.

 

Tytus decided he was going to be nice and kind from now on…at least until he wasn’t.

 

Toby Price author

jtobyprice@gmail.com

@JediPadmaster on Twitter

She gave me my kid back… I was glad to return the favor

Earlier today, I heard someone’s horn honking in the front yard. Most of us would not think twice about it, but we aren’t most people. Because our kids have autism, and have left the house so many times on their own, we jump when someone honks near our house. I went outside and found cars backed up and down the street. They were desperately trying to corral a small friend who had left their house with out a grown up.

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She was adorable. She came right to me. I was super worried that someone had hit her with a car she was a little wobbly. We didn’t put her on Facebook or list her as found because she was a fancy dog. Pugs like her, would have had everyone and their mother coming to tell me she “belonged” to them. We were just going to watch the message boards and take her to our vet to see if she was chipped.

 

I admit, I spent the whole day snuggled up with her and was becoming attached. We leave the windows open a lot. Around 7:30, I saw a car driving slowly down our street. Their windows were down.  They even had their flashers on. I could have ignored it. Kept the awesome puppy, but I knew I could not do that.My conscious would have worn me down.  I went outside, sat down and waited.  Eventually that car came back up our street. I stopped her and asked her what was wrong. She said she was looking for her pug puppy. I took her inside and Leah helped reunite them.  I was sad, but grateful I did the right thing. The lady was super sweet and the puppy, Gracie, was so glad to see her owner. After she left, Leah looked me in the eyes and said you did the right thing. Yeah, I know. She said, “Do you know who that lady is?” Umm not really.

Seven years ago, that nice lady heard her dogs barking around two am.  When she went to check on them, she saw my Addison, six years old, at the time running down the street. She knew about Addy but wasn’t sure where she lived. She knew she needed to call the police. Because of this nice lady, the firemen, paramedics, and police were able to get Addison back to us. I was super happy to return the favor today.  It’s amazing how everything happens for a reason.

 

 

 

 

Who would be on your Zombie IEP support team?

My name is Toby, and I like the Walking Dead. First, let me state. I do not let my kids watch it. I will not have it on if they are awake. It is not for kids. Second, I do not like scary movies. I have three kids, two with autism and work in Education in Mississippi. My real life, at times, is scarier than anything on television or at the movies. But, I love this show!

It’s the people that draw me in. At the heart of the it isn’t about Zombies aka Walkers. It is about a family.  It is about a dad that is trying to take care of his kids in a scary, dangerous, and unpredictable world. His family is made up of people that were brought into his life when their world changed drastically. I can draw so many weird parallels that help make this show so relatable.

I am a dad. I have three kids, two with autism. I am terrified of the things that could happen to them on any given day. I wake up each morning trying to teach them how to survive in a crazy, dangerous, and unpredictable world.  Just like Rick on the show. Most of our “family” consists of people who may not share our blood but they are closer to us than the people who do. We look out for each other, offer support, and keep each other safe. Just like the family on the show.

What really draws me into the show is that the people there are looking for hope. Hope in a world that is bleak and desolate. They wake up each day hoping that it can be better. Who does not need more hope? I know I do. My wife and I discuss the things that happen a lot on the show.

We were speaking the other night and we got to talking about which walking dead character would you most like to have at an IEP meeting with you? We had a long conversation.  I had some thoughts and decided to share them on twitter. I asked my friends in my PLN the same question. What character from the show would you want as an advocate and why?  Tonight’s #manvsautism  chat will ask that same question. Who from the Walking Dead would you want in your corner? Answer from a parent’s perspective. Answer from a teacher’s perspective. Then lets start to think about why we would want them? What characteristics do they bring to the table? How can we introduce those same characteristics into our own IEP meetings? (Without Rick, Daryl, and a bunch of Walkers showing up!)

Tonight we talk IEP, WALKERS, and who you would want in your corner. Stop by #manvsautism  chat on twitter at 8:30 central! See you then!

typorama

 

 

 

TP

MTFBWY

 

 

Isn’t That Impossible?

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Isn’t That Impossible?

Leah’s best friend from Ohio had flown down to Biloxi to visit. She invited our whole family to come and stay with her and her new husband at the Hard Rock Hotel and Casino. We were so excited. Ok, I was a little excited. I was mostly nervous because we haven’t stayed away from home since Marley was born. The kiddos were still very young and very set in their ways. We drove three hours to BIloxi and had a great day at the beach visiting with friends. We made our way to the hotel and then it happened. Addison got upset. I am talking epic meltdown upset the minute we pulled into the hotel parking garage. Why? Because it was night time and what we were doing was not part of her typical night time routine. The hotel room was amazing, probably one of the nicest I had ever seen. We got the kids in the room. We gave them their medicine. Addison could not calm down.  We tried everything we could to prolong our stay but nothing was working. Addison wanted to be in her room back in her house.. So we did the only thing we thought would help… we drove the three hours back home so she could sleep in her bed.  It was awful. We cut the trip short. We felt totally defeated. It was the first time we had tried an overnight family trip and it went horribly wrong. Was it always going to be like this? Would we never be able to take an overnight trip with the kids?

 

I cannot tell you how many experts told us how bad things were going to be for us and our kids.  We were told if McKade was not speaking by now he probably never would.  I remember taking Addison to see a doctor for an evaluation. They told us she was mentally retarded and would require help with even the most basic skills. Because Addison and McKade were both on the autism spectrum those same experts told us statistically that Marley Kate would have autism. When the kids were diagnosed, we were told that eighty two percent of couples with one child who has a disability divorce. We would have had to get divorced, then remarried and divorced again just to keep up with the odds. Screw the odds.

McKade can speak. He will answer questions in context. He will even start some spontaneous conversations. Addison has more than surpassed the label that they tried to stick to her. She has started reading basic sentences in class. This year for the first time, she told us her first and last name when we asked! Marley Kate does not have autism. She is nine going on thirty seven. She has aspirations of helping people with autism, designing homes, and traveling to the site where the Titanic sank. McKade is great at math, building legos, and can cook his own scrambled eggs. Addison loves to paint and recently started writing! All of the kids accomplishments have taken a little longer than the norm to happen but they still happened. Potty training the first two kids took almost seven years. A long hard seven years but we got there. Marley decided at about 18 months that she would be potty trained. We told her to pace herself. Based on our experience she had about six more years to knock that goal out.

Han Solo said “Never Tell Me the Odds.” Because to him it did not matter what should happen. He was going to do it anyway. We adopted that same idea in this house. It does not matter what should happen. We are going to get our kids where we want them to be no matter what other people tell us should happen.

Legislators will impose rules, regulations, and standards that will make our jobs harder. We will be low on supplies, short on time, and patience. We will be physically and mentally drained by the expectations that are placed on us by educators.  We will still teach. We will still bring kids from where they are to where they need to be. No matter what the odds say. Do not listen to what others tell you about kids and the odds of your success.  You have to focus on what our students can become. Remember why you started doing what you do and face the odds head on! The first step in overcoming insurmountable odds is believing you can. It may take a little time to complete the impossible, but it can be done.
Our first trip with the kids ended horribly. We drove home three hours and ended our trip before it really even started. Addison panicked because we were in some strange hotel and not her room. Now, Addison would rather stay in a hotel than at her house. She has traveled all over Mississippi, Tennessee, Alabama, and Florida. We even spent Christmas at Disney World. The kids will take a trip at the drop of a hat. Screw the odds. We were not supposed to be able to stay married, but we did.  Addison was not supposed to be able to read, but she did. McKade was not supposed to be able to speak, but he did.  Why, because we believed we could.

 

“Is that even possible?”

“I never answer that question until after I’ve done it.”

Han Solo

Sometimes, you have to let the Wookiee win. A lesson in choosing your battles. #parentlikeaGeek

“I suggest a new strategy R2, let the Wookiee win.”

C-3PO  Star Wars

Sometimes you have to let the Wookiee win. Some battles aren’t worth fighting. Whether you are a teacher in a classroom or a parent at home sometimes you have to let go.  My kitchen has a window into the living room. If my oldest daughter walked passed a certain point in the kitchen, she could not turn around and walk back out.  She would climb through the window into the living room. For some reason, I can’t explain it drove me batty. I would beg. She would still go through the window. I would praise. She would still go through the window. I would yell. She would still climb through the window.

I eventually had to ask myself… what harm is it doing that she climbed through the window? Was she hurting herself? Was she hurting someone else? Was she destroying the house? NO…. the only person that was really bothered by the behavior was me.

Teachers  have to do the same with their kids in their classes. Does it really matter if they are standing while you teach? Does it bother other students or does it just bother me? Set some limits. Stop and reflect on what you really want that student (Wookiee) to do or not while they are in your room. Write down the most important things. Don’t let them hurt themselves. Don’t let them hurt someone else. But learn to let some things go. 

Back to the window in the kitchen and my own little Wookiee. After I stopped loosing my you know what when she climbed through the window, she stopped climbing through the window. Kids will respond to get you to react; whether they have autism or they are typical. So focus on what’s important, let some things go. Sometimes, it’s ok to let the Wookiee win.

@jedipadmaster

Addy and I in front of the Infamous Kitchen window.

Addy and I in front of the Infamous Kitchen window.