Monday, April 2, 2012

A Day for Me

Hi, I'm Caydon.

 Today is World Autism Awareness Day, also known as "Light It Up Blue" for Autism Speaks.

Blue so happens to be my favorite color. Did you know that? Did you know that I'm also obsessed with dinosaurs, Mario Cart, Star Wars, and love making new friends? Maybe you did, and maybe you didn't. Lots of people seem to have a hard time acknowledging that I'm a little boy, just like their kids, or like they were a few decades ago. Just because I have autism, doesn't mean I am autism. Because of this, I'd like to share a few things with you.

For starters, I love having a routine. I'm very specific as to what I want, and when I want it. Luckily, my mom knows what I expect and when, and can sometimes help me prepare for when things don't go as I plan. Some things, I just need to adjust to. Like naptime. I hate naptime, but I'm not the only 5 year old in the world who despises nap time. So, this is an area that doesn't make me unique. Mom and I thought that maybe you'd like to see what an average day looks like for me, since it is, after all, the biggest day of the year for autism:

6:15 AM- Mom starts waking me up while in the process of getting herself ready. Yes, I take a long time waking up. I'm kind of like a teenager stuck in a 5 year old's body. Struggle to fall asleep, never want to get up. What can I say? I'm smart and figured it out early.

6:45 AM- Mom starts making my medicine smoothy. Every morning, I get a 1/2 tablespoon of a vitamin formulated just for kids with autism, and a huge Omega that is bigger than my pinky finger. Mom makes this into a yummy fruit smoothy so it goes down easy.

6:50 AM- Mom comes in and helps me get ready for school. Part of my autism makes it hard for me to take care of myself. I don't really care how I look, what I wear, or how I smell. I'm perfectly OK wearing my bedtime pullup all day, having dirt all over my body, and having long nails. Actually, I hate getting my hair and nails cut. It freaks me out. So, my norm is usually at the "could use a cut anytime" length. However, mom insists on making me look decent. Whatever. As long as I can wear a shirt with a dinosaur, and that I don't have to wear socks. The strings inside the socks freak me out. Also, the only pairs of shoes I will wear has dinosaurs on them and, of course, no laces. I hate laces or velcro straps. Sometimes I will wear flip flops, but not for very long.

7:00 AM- We get into the car to leave, which is when mom has to give me the plans for the day. What schools am I going to? What are we doing after school? Who am I seeing today? If it's a different day, mom let's me know earlier than this. She'll have to repeat it a few times before we leave. If it is a normal day, I still want to hear the plans at least once. This is also the time that I start whining about going to school. I don't like it because they used to make me take naps. I recently moved into the integrated preschool since I'm doing really well. I'm still adjusting to the routine change. I really start getting nervous the closer our car gets to school. On a good note, we don't have to go on a freeway on-ramp, which sometimes scares me.

7:15 AM- I kiss my mom goodbye and get dropped off at daycare. Transitioning from my mom to the day is hard for me, and I used to be kind of mean to the other kids. Now I just tell them that I want alone time. Sometimes it works, other times it doesn't. If they don't leave me alone, I get overwhelmed and often end up in trouble. It's not that I don't want friends; it's just that the transition is hard for me.

7:30 AM- I get a whole 'nother breakfast, but I have to be social at it. I really like it when we can talk about dinosaurs. If we don't talk about dinosaurs, I'm not interested in talking. What can I say? I know what I like. Besides, I'm still warming up to the day.

7:45 AM- After breakfast, I play with the dinosaurs that the daycare ladies bought just for me. They noticed that I didn't like the other toys there, and thought this would help me learn to share. Sometimes I do share. Actually, I like playing with other kids and I'm getting pretty good at it. I have a hard time saying more than "hi," "my name is Caydon," "want to play?" and "I want to be alone right now". Beyond that, I need someone to help me. This difficulty is called Pragmatics. Mom is always helping me with this area, and fighting the school district to give me Speech Services to help me in this area. They don't think I need it because I have my sounds right when I try hard. They ignore the fact that, when I get overwhelmed, I mumble and stutter, and I can't maintain a conversation with kids my own age. It's frustrating, and when I get frustrated, I often get into trouble.

11:00- I eat lunch now by myself because I have to get ready for school. I have to take another dose of my nasty autism vitamin, but I'm happy if it's mixed with juice and I can chase it with something. I try to be tough. Mom is pretty sure it's because I remember B12 shots in my butt. No, thank you.

11:30- My school bus comes to pick me up and drive me to my special preschool. I really like going there, and have a new friend named James. He likes dinosaurs, too. Sometimes, we even make dinosaurs out of legos. My day there consists of integrated speech, physical, and occupational therapy, as well as learning things to get me ready for Kindergarten. They work with me a lot on how to handle situations if they don't go as I planned, just like mom does at home. They also try to help me make friends. My favorite subject is art. I also like writing letters, but I only copy what I see and don't copy what I hear. I've worked on writing my name for a year now, and get it correct most days. I am known to mix it up, which has mom worried about Dyslexia. Did I mention that mom is a special education teacher, and worries too much about me? I did tell you that it's just autism that I have, right? My developmental behavioral pediatrician says I also have ADHD and ODD, but mom says those are things that fall into autism. My neurologist says I have really abnormal brain waves and grey brain areas, but mom says this also falls into the autism category. Mom thinks one diagnosis for me is enough, and is fighting my preschool really hard regarding me not having a cognitive delay. They think I do because I have a hard time learning. Truth is, I am so smart, I'd probably blow you away. Sometimes I'll ramble to mom about the different time periods and types of dinosaurs. I use really big words. I also have an amazing memory, like the time I didn't go to Disneyland for 6 months but remembered the Haunted House, that I only went on once, has a scary hand. Or like the time mom didn't remember the flavor of Trader Joe's squeezers (yogurt sticks) that we had in our freezer at home (we had the red box, I wanted the green because it was strawberry). See? I told you I'm really smart! I just don't find learning certain things exciting. I'm glad mom knows this, and is fighting the school district on it.

2:00 PM- I ride the bus back to my daycare, where I like to watch TV until mom picks me up. We don't have cable at home (mom says money doesn't grow on trees, but I don't understand what she's talking about. I take things literally, and already knew money doesn't grow on trees. But I do remember her telling me money is made out of paper, and paper comes from trees. So, technically, it DOES come from trees.) so I enjoy watching TV by myself until my mom gets there. Sometimes, I'll have dinosaurs join me. On really good days, I'll play hide and go seek with some of the other kids.

4:00 PM- Mom gets me from school. We always sing on the way home. I know all of the cool songs and am a really good dancer. We always stop by the mailbox on the way home, and I'll be sure to let mom know if we don't.

4:30 PM- Mom and I start my homeschooling. We are working on teaching me my letters (actually, I call it learning how to read, because it IS), how to write, and we do music and more occupational therapy. I learn the best through music therapy, and we actually have fun. Mom gives me my joint compressions and uses a clear brush to comb me all over my body. It is really relaxing. I also love to jump, so I have a trampoline. If I had a really hard day, mom will give me ice to chew on. This is by far one of the best ways to help me calm down. Some days, we'll skip music and academics, and go to the grocery store where I work on social skills, or we'll go to my counseling/ABA class. I used to have a really hard time going to grocery stores because it's so busy. There are some really nice ladies at Trader Joe's who know mom and I, and help keep me calm. When I was younger and really struggled, they would stay with me the whole time mom shopped. They also did a lot of research to help mom with me. They even give my mom hugs, but I don't let them touch me because I'm not sure of them. I do, however, let them give me cookies and I get to choose something from the treasure box. Other kids are supposed to find an iguana, but everyone there says I can get a treasure if I make good choices and don't get overwhelmed. I always choose one candy and one toy. I always eat the candy while waiting with my mom. On the days that they run out of treasures, I freak out. Once, I broke a pot on a wall. I didn't mean to, but it was already busy and stressful, and then my routine changed. Mom had to restrain me and give me deep pressure in the parking lot. The girls that worked there loaded up the car for mom so that she could work with me. Mom cried on the way home, and I still don't know why. Mom cries a lot when I melt down, and I don't know why she would do that when I'm the one overstimulated. I also hear her talk a lot to God whenever she cries because of me. She talks to him like He's a friend of hers that is helping her do something hard. I still don't understand it, but it happens every time like clockwork. At least it's something I can expect.

5:30 PM- Mom lets me choose whether or not I help her cook dinner, or go outside to play with my dinosaurs. Mom got a house just for me with a backyard, and I love it out there. Sometimes, I'll pick oranges to help mom with dinner. Mom always knows I'm ok because I grunt a lot while I'm playing. It makes me feel better after a long day. It's funny, too, because if I start playing quietly, she always runs out and checks on me right away. I think she likes hearing me.

6:00 PM- Mom and I eat dinner. I have to, again, take my autism vitamin and Omega. It's so gross! She always tries to talk to me about my day, and sometimes she'll tell me how her day was. Sometimes I can tell she wishes I would ask her questions, but I don't even know what to say. I know she asks my teachers about how my day was because she'll use what she hears to ask questions. "Who did you play dinosaurs with inside?" she'll say. It's like she is trying to see if I can remember, rather than as if she's actually asking a question she doesn't know the answer to. She's funny; she's always looking for ways to get me to talk to her. Most of the time, we just end up talking about dinosaurs. I teach her a lot because I remember everything she reads to me, but she says her brain doesn't work like that.

6:20 PM- Mom and I start cleaning up the house. We always turn on our music really loudly and have a dance party. My job is to put the dishes in the sink, put my toys away, and vacuum an area. She always starts scrubbing stuff down and doing the dishes. We almost always stop the dance party once I start stemming. I'll either rock, spin in circles (which isn't how I dance unless I'm holding mom's hands), or bonk my head into the wall. Sometimes I'll start biting myself because I need the pressure. This often tells mom that I've had enough chores and music, so she gives me ice to chew on and then we move into quiet time.

6:45 PM- This is up there on my favorite part of the day. Mom and I either go on a bike ride together, she'll go on a run and I'll ride my bike, or we'll do a workout game on the wii. I think yoga is hilarious!

7:15 PM-  Mom always lets me play Mario Cart while she takes a shower, and then she gives me a bath after. I used to hate taking baths, but now that mom has taught me how to wash my own hair, I'm OK with it.

7:45 PM- Quiet time is when mom gets some of her grading or reading done, and I read books. When I'm bored with books, I play more Mario Cart on the TV. It really depends on how much grading she has to do. On rare occasions, she won't have any more work to do, and she'll be able to sit down and watch a movie with me. I really like this, because we get to cuddle. A lot of kids with autism can't stand cuddling, but I love it. Mom says it's because she lets me sleep in her bed, and because she nursed me for 17 months. I don't know why I love cuddling, but I do. I really love it when mom rubs my back or squeezes my shoulders.

8:15 PM- We brush my teeth, put me in a pull-up, pray, and read a book to go to bed. I sleep in mom's bed because I have a really hard time at night. I get very scared, have night-terrors, and have a lot more abnormal activity in my brain. I normally finally fall asleep to reading around 10. Sometimes, mom will even fall asleep before me. She tries really hard not to, but I know she's always tired after her day so I don't make her stay up. Besides, I'm bound to wake her up at least a few times throughout the night.

So, there you have it. My day. What does your day with, or without, autism look like? 

Now, that was kind of long... so mom and I will save what else you may want to learn about me for later this month. April is Autism Awareness month. So stay tuned!

No comments:

Post a Comment