When I Feel Tired: Stevie’s Perspective


I woke up really early today. I wanted to play on the purple computer so I kept myself awake. When I heard my little sister get up, I got up too so I could ask my dad if I could play. He said it was too early and I would have to wait until 10:00 am. I needed to keep myself awake so I decided to act out one of the movies I really like.  I like acting out Honey I Blew Up The Kid! because there is a lot of crashing in that movie, so I will crash things too, and I love crashing...a lot.

My mom and dad do not like crashing at all. They took my big trucks away because I was throwing them while standing on top of the back of the couch. It was the best way to act like I'm in the movie. I like to be Adam when he is a giant toddler.  I also like the part where the real cars look like toy cars in giant Adam's hands. So I had to stand up there to throw the trucks down. It was the only way I could get the truck to look like it was the one in the movie, and for me to feel like I'm as big as Adam.

Since I didn't have my big cars and trucks, I had to come up with some other ideas of what to use to act the movie out. I decided I would use my little sisters stuffed cat to be "Big Bunny" and I used her dollhouse to be the house. That would be fun to throw on the floor and hear it crash.

I especially like anticipating the reaction of my mom and dad.  They run in shouting, "Stevie, no throwing toys!" and then they tell me I will have a time out if I keep doing it. But I like it so much and I need to keep myself awake so I did it again. Then I got a time-out and they said I couldn't play with the computer even though it was 10:00 am, because I had to go to my room. I couldn't calm down though. I kept playing loudly in my room so I could stay awake and wouldn't miss my time on the computer.

Around 10:30 am I was finally calm enough that they said I could play on the purple computer. I tried to find You-Tube videos of Honey I Blew Up The Kid so I could memorize the script better and learn the sound effects and background music. My dad said that was not allowed so I opened Garage Band and iMovie, and started creating my own videos.

I like to sing songs in multiple parts and then play them all together to make the different harmonies. Sometimes, if I don't like the words the song has, I will change them. I recorded Math-U-See's Skip Counting Facts song about the multiples of 7. I like to do the multiples differently so I recorded myself singing and saying, "7-14-21-28-35-38-43-51-58-63-70". It drives everyone crazy when I say the wrong numbers. I know the right ones, but I like these numbers in the song. So I recorded my voice correcting the numbers in Garage Band and blend it with the track of the Skip Counting Facts by Steve Demme. Then I imported it into iMovie to make the video. When I played the "Official Song" for everyone, my mom called me a stinker. I think she really liked it though.

When my time was up on the computer, I wanted to make it my own choice to end the time. I don't want anything else to make me stop when I am not ready. So I do something that will make my parents take the computer away from me. At about 5 minutes left of my time, I take the computer and turn it over on it's side. I used to just throw it off of the table but then I lost the computer for a forever-long time. I don't want that to happen so I just turn it on it's side to make my time finish on my own doing. Then I run to my room as fast as I can with my hands covering my ears because I KNOW it is coming:  Mom and Dad are going to call after me and tell me not to do that!  I like that part too. It's kind of like my routine now. It's just what I do.

But this time, my mom said I could not have the computer again at 6:00 pm because I tilted it on it's side again. I am supposed to be gentle. Now, I have to earn it back by being good, and since I lost it at 6:00 pm, I have to earn it for playing at 7:00 pm-- if I am good. I was not happy about that at all. That was a change in the schedule that I did not want to happen.

Then I remembered how tired I was because I didn't sleep much last night. I decided to watch Doc McStuffins and lay down on the couch. Now that I have to wait so many hours to get my computer time again, I might as well rest up so I will be awake for it. Plus, my new in-home supports person is coming and I don't want to play with her yet. Maybe I will just sleep through her time here and I won't have to play. Anyway, I want to play with my Mommy, not her.



Catastrophe In A Cafeteria: Assaulted by the Senses


It's snowing!  I love the white fluttering down, tickling my eyes. I wanted to see every bit of snow so I pulled up a stool and perched myself on it to watch out the window. Snow means it's Winter and snow means it's Christmas. Because that is what happens in Winter and at Christmas, it snows.  

At Christmastime, my mom bakes lots of things. There are all sorts of new smells. Some I like and some I don't. Last year I asked my mom to make bread every day. I love to make bread, but I don't want to eat it. I just want  to mix the dough, pour the the ingredients, dump the flour so it makes a cloud rise up at me. My mom always tell me to be gentle when I pour the flour, but if I do that, then I won't get to see the cloud. So I dump it anyway. 

I like to watch the bread rise up. It takes a long time and sometimes I have to make myself stop watching it so it can grow. My mom always shows me how big it got before she puts it in the oven. Then the smell of bread fills the whole house. 

I like that smell.  It seems to cover up some of the others smells that I don't like, like stuffing and turkey. 

The smells that bother me the most are the ones in a cafeteria or restaurant. Last summer we went to Saint Joe's College for the Autism Family Retreat. I really wanted to go, and I wanted to stay in a dorm-hotel room.  I wanted to go swimming, and I wanted to be on that beautiful, open campus. I had forgotten all about the cafeteria. 

We got there at dinner time.  My mom brought my lunchbox because I am allergic to lots of foods and I don't like most other foods. We found a table on the far edge of the cafeteria, past the food court, across the whole dinning area and by the place people go to put their dirty dishes away.  From there I could see out the glass doors to the beautiful campus. I could also hear all the people clinking their forks. The clink shot straight through my ear and exploded in my body like when thunder is directly overhead! I could hear people I didn't know making unusual sounds that I wasn't used to. Some of them were loud and would catch me off guard. So I would hum and talk to myself and plug my ears. Then it wouldn't hurt so much, but it wasn't a very comfortable position for long. 

My family went to get their food in the food court and brought it back to the table where I was. They all got different things. At home, everyone has the same food to eat so the smells are all the same. But here, they all had different things. Some were really gross looking, with red poured all over white shoe-lace shaped slimy pasta. I like my food all the same color. And not red!  My little sister got a hot dog. That wasn't too bad because she has that a lot at home and I am used to the smell, even if it looks kinda gross all cut up.

clink-clink-clink  "Eeeeeeee-Ahhhh!"

My big sister and brother got a lot of food. Most of it was fried and I don't like that smell. I never had fried food before and my mom doesn't fry her food at home. Why would someone do that? Anyway, they also got a lot of dessert. They found the sundae bar and put ice-cream in their bowl. That part was ok but then they put other things on top! Hope put some brown goopy stuff that thickly dripped down the ice-cream and melted it a little. And she be a red ball on top--I don't know why but she's always doing weird things like that. And my big brother put something bright red on his ice-cream that dipped all over, too. It had lumps in the thin liquid it that looked really gross.  

Clink-Clink-Clink. "AhhhAHHaaaaeeeek!" 

It was hard to be in the food court with all the shiny silverware shooting light sparks into my eyes. The clink-clink-clink of silverware hitting plates, and the noise of all the people and the many new smells just added up and wore me out. 

But nothing compares to what happened the next morning. We went to breakfast in the cafeteria again and we sat in the same place. As soon as we walked in I didn't feel good. There was a terrible smell that turned out to be eggs. I am allergic to eggs. The smell was all over--there was no place to escape it and I felt like I was going to be sick. Since we were sitting by the dirty dishes, I also could smell those and some of it smelled like rotten fish. Why would they have fish for breakfast? I didn't seen anyone eating fish but I smelled it anyway.  Fish smell mixed with egg stench and all the new smells of breakfast foods we don't have at home very much did me in. I did not want to go back.

So at lunchtime, I said I didn't want to go but my parents said I had to because it is lunch time and everyone is hungry and needs to eat. So they made me come. I couldn't handle it though. I tried to tell them but they wouldn't listen. I didn't want to eat. I couldn't eat with all those awful smells and the clink-clink-clink and the screaming and so I screamed too--louder than all the other noises so I could have control over what I heard.

I screamed out of frustration of being forced into a place i just couldn't handle. My mom pushed her food away and had me sit on her lap and she held me tight. I liked that, it helped to make me feel secure. But I could still smell and I could still hear and I knew I was all-consumed with things that hurt me. I kicked the table, trying to push it farther away from me. All the dishes jiggled but it didn't fall over so I kept trying. My mom scooted us farther back from the table so I couldn't kick it any more.

Finally, we left. I was exhausted and my mom was too after holding me so long. We took the long hike back to the dorm-hotel and the fresh air helped me so much. The rotten fish and eggs disappeard, replaced by fresh grass and flowers, and bright blue skies with pillowy white clouds floating in it. The unconstrained open campus freed me. Then I saw a big building that I hadn't been in and it had 3 rows of windows so I thought there must be an elevator in there. So I asked my mom to take me on the elevator and she did!  I went up and looked at each floor, memorizing as much as I could. When it was time to go back to my dorm I didn't want to but my mom said I had to because it was time.  

Once I was there I got my construction paper and crayons out and I started making the elevators I had been in at the campus. That helped me get back to my happy place, and be able to move on from the overwhelming trauma at the cafeteria.

I used to like to go to restaurants and watch out the windows. When it was my dad's birthday I asked if we were going to Romeo's Pizza. I really wanted to go because that is where we went the last year for his birthday dinner. They decided to go and I got to drive in the silver car with my mom and baby sister. Joy kept asking where we were going because she didn't remember Romeo's. She is only 3 years old. My mom started describing it to her and then I realized that Romeo's is like a cafeteria!  

Then I didn't want to go any more. I started getting more upset and my heart started racing faster and clink-clink-clink I could just hear and smell, what was coming. Ahhhh-eeeeeK! It was going to be like the cafeteria!  I wanted my mom to turn around right away but she kept going because she had Joy too, and Joy wanted to go out for pizza like she was promised. 

Once we got to Romeos, I wouldn't get out of the car. When they asked me to, I just gave a short scream as an answer.  My parents decided that my mom would drive me home because they remember how hard it was for me at St. Joe's.  

I don't know if I will try a restaurant again or not. Probably not.  

But I do want to bake.  Maybe I will bake bread again for everyone at Christmastime. Maybe I will make cookies too. I don't want to eat it though. I will just stick to the smells for now.

Disclaimer: This post was written by my mom, as she tries to understand what I go through as a 9 year old kid with the sensory differences of autism, to the best of her ability. This in no way reflects reality, and St. Joe's cafeteria offers excellent food!