I am super excited for spring. I love the feeling of sunshine. Just being outside does wonders for my feelings of anxiety and depression. Cool nights and fresh air are what I love most about living in Colorado. May is one of my favorite months of the year. I love to see new buds on our trees and the rolling hills turning green. It is time to get out there and enjoy the beauty of the nature that god has given to us. Be thankful for such beauty. Aaron.
I love Easter time. April feels like the earth is emerging from darkness and back into the light. Flowers bloom, trees make leaves, birds sing. The days start becoming longer. Everything reflects new life. That is why Easter is so important to me. Christ died on Friday and was resurrected on Sunday. Life became new again. Because of that singular event, we will someday all live again. What an amazing gift. No matter how cold and dark your winter became, the Son will warm your spring. I love him for making that possible. Enjoy this special weekend. Aaron.
April is Autism Awareness Month and once again, like wildflowers in Texas, you start seeing blue puzzle pieces adorning lapels and Facebook posts sharing news reports giving statistics and asking for money for autism-related non-profits. When April turns to May, the news cycles move on to something else and the coaches put on a different pin and everyone goes back to their routine and give little thought to autism. Unfortunately, I don’t have that luxury. Autism for me is a life sentence. Many people know someone with autism–probably most people, in fact. I would bet that they have wondered how they can help but just don’t know how. Here are some ideas from someone who has autism: 1. Smile at someone with special needs. They are there on the inside and would love to be acknowledged. I would rather have someone get upset with me than just ignore me. 2. Try your best to have a simple conversation. We want to be able to talk with you, it is just hard. Every effort is appreciated. 3. Give families with autism a break. They are dealing the best they can. If their child acts out in a store or a movie theater, don’t judge them or scowl at them. You don’t understand how hard it is to even go out of the house sometimes. These parents are heroes and deserve help and respect, not scorn. 4. Be willing to pay just a little in taxes to develop the resources for the needs of those affected by autism. We don’t want to be a drain on society but we really can’t survive without support and some of us have too many challenges for our families to handle alone. Currently, resources for young adults with severe autism are sorely lacking and the waiting lists for appropriate help can be decades long. This is not ok. We need your help. 5. Special education needs more teachers and better approaches to recognize the intelligence of the kids that they are serving. 6. If you can, give jobs to people with special needs. It might take us longer to learn but we will be loyal and will always do our best. 7. Give a hug to the siblings of special needs kids. They deal with a lot. 8. Don’t underestimate us. Instead, be creative in finding ways to help us thrive and you will be surprised at what we can do. 9. Be an advocate. If you see someone being treated poorly, stand up for them. 10. Kids with autism are special kids, not just because they have special needs but because they are strong, intelligent, capable and loving. Help them learn that about themselves. It will change their lives and yours. Aaron
Today, my dad and I went cross country skiing at the Country Club at Woodmoor right here in Monument. We got enough snow over the weekend that they could groom the trails on the golf course. It was nice and sunny and the temperature was great for being outside with a light jacket especially when working up a sweat on the skis. It was really fun to just be outside doing something different. We got cross country skis for Christmas but haven’t had much chance to use them yet because of snow conditions or scheduling conflicts. So, it was also cool to feel like I’m getting better at skiing than when I tried it for the first time last year. I think it is a good sport for me because I have good leg muscles and a fit heart and it doesn’t take as much practice as downhill skiing. I think it will help me stay in shape during the winters so that I’ll be more ready for running in the spring. My dad and I want to do the Pikes Peak Ascent this year and then another marathon in the fall. This year is Arizona’s turn. I really am going to work on getting faster and not stopping except at feed zones. I have already qualified for the Boston marathon as a disabled person but that isn’t good enough for me. I want to qualify the same way that I would if I didn’t have autism. Then, I will be satisfied. Autism won’t stop me from being a real runner! I’m going to try for three hours and thirty minutes at the marathon in Tucson. Then, I’ll only have to knock off another twenty five minutes to be BQ official. My dad will have to pick it up some to get that time but I’ll push him like he has pushed me. He’ll be a fast old dude with a young handsome running partner pulling him along.
I am watching a lecture series on how our brains function in creating and storing memories. I am finding it very fascinating. I have always wondered about this because I have a better memory for certain things than the average person, I think. For example, I have pretty vivid memories of some of the things in our house in Colorado when I was just two years old. From what I’ve been told, most people can’t remember that far into their childhood. It’s interesting because that is when my brain was also becoming dysfunctional in other areas ultimately resulting in autism. I think there is a connection. Autistic savants have photographic memories for certain things. Sometimes it’s math or historical events such as dates on a calendar. Sometimes it’s visual, like being able to draw a city map after just seeing it once. Sometimes it is auditory like being able to play a piece of music by ear on the piano after hearing it once. All of these memories are created in different parts of the brain and yet all have autism in common. What is causing this unusual memory storage in the autistic brain? It seems like a pretty big clue about the origin of the problem leading to pretty amazing skills on one hand with severe dysfunction on the other. I am interested to learn more.
After my posts on special education, my mom found a lecture series on Amazon video called the Great Courses. These are lectures given by professors or experts that cover a wide variety of topics in various subjects ranging from art to mathematics and everything in between. I started watching some of these after school and I love it. I am currently starting a series on how our minds learn. It looks like it is going to be super interesting and is right up my alley of things I am interested in. I look forward to gaining some insight into my own brain and hope that I’ll learn some things about how I am most likely to be successful. I might want to do research in this area. I am fascinated by the brain and how it functions and in my case, malfunctions in some areas. I might be a great course learner for a lifetime. I hope so. To the other parents of autistic kids out there, this is a perfect way to give your kids some knowledge on interesting subjects that they won’t get in school or doing ABA. Thanks mom for finding this series and dad for getting me started on them. I am learning new stuff and I love it. This is a good prep for college.
I have been thinking about how I learn the best and how a teacher could best engage me in that process. Maybe this idea would only work for me and not other kids with autism, I’m not sure. But for me, this is how I would structure the day. First thing in the morning, I need some exercise time to get my brain functioning. This doesn’t need to be long, maybe fifteen minutes of stretching or movement would do it. Then, my first class would be something challenging. My brain is most fresh in the morning and I’m most likely going to absorb more. For me, this class would be math or science since those are the subjects that I struggle the most with. I don’t know how to teach me math. The concept is foreign to my brain. I know that many autistics are really good at math, but not me. I think that watching videos is going to be the best for me. I don’t think I’ll ever be able to regurgitate a solution to a math problem but at least I could understand the concept and maybe something would sink in. Just repeating the same thing that I’m stuck on for months and years isn’t very useful though. That is how my math education has been up until now. And not surprisingly, I dread math time. After math, I need something easy that I enjoy. This is the time to read a book to us. But, something age-level and interesting. My parents read to us every night before bed. We have read all kinds of books—everything from Dickens to Steinbeck, Twain to Hemingway—plus fun books like Harry Potter. Reading time is my favorite part of the day. I love hearing about different places and times. After reading, it would be a good time for a break with some down-time. Down-time recharges my battery. I usually like to listen to some music and be by myself for a little bit. Fifteen minutes is enough. Then, it is time to work on communication. We would each need an aide or a peer to work with us. I would want to try having written conversations with that person using the iPad. The more consistent that time is and the more I get comfortable with my helper, the better I’m going to do with them. I need a timer on to tell me how long I need to focus. I can do forty-five minutes to an hour with my dad but had to work up to that. I would want to start with fifteen minutes with someone new. After each interval, I need a break. I could then do another interval. I would dedicate one hour to this in the morning half of the day. Then it’s time for lunch. After lunch, I would do another session of a hard subject. If I did math in the morning, then I would want to do science in the afternoon. Again, I think videos would work the best for me. I would eventually be able to communicate comprehension questions once I got better […]
In my school, field trips would be incredibly important and would be strongly emphasized. We would go on a field trip every month without fail. We would not go to a park or a fast food place but to a museum or a job site or a nonprofit center and do some service. There is nothing that makes me feel better as someone with some needs that I can’t provide for myself than to be able to give something back to someone else. That would be a requirement at my school. We might not be able to do much but we would all do something. Field trips are important because it helps you see the real world and to absorb things from being in different environments. That is how I have learned a lot of new things even if no one else knew that I was learning. When we get to experience new things, it triggers curiosity and that improves our brain function. It’s not rocket science. A rocket science museum would be very cool, though!
I realize that my physical body is stronger than many others with special needs. It is a blessing that I don’t take for granted. I love to run and hike and try new adventures. Being outside does wonders for my brain and decreases my anxiety by about a thousand percent. I suspect that is not unique to me. Even if I couldn’t run, I would want to be outside as much as possible. When I am indoors at school, the sounds are really amplified and hard to block out. The fluorescent lights hum and have subtle waves in the lighting that is distracting. The air conditioner or heater is usually too cold or too hot. Classrooms are honestly not the best learning environment, at least for me. In my school, we would be outside as much as possible. Ideal would be an outside patio with some climate control but still open to the fresh air and natural light. We would spend an hour each day doing some sort of outdoor activity where we get our bodies moving. That would look different for different kids based on their physical abilities. I would think that if I were unable to walk that being pushed around the track would still feel great and I would want to do that every day. Everybody can move their body somehow, even if someone is doing it for you. The mind needs that sensory input, I believe, to be at its best.
Why is it that those who created the curriculum for special education think that we students with disabilities have zero ambition? I can’t understand how they think that all we want to do each day is another stupid set of meaningless tasks that do nothing for our futures. How does a fifty-piece puzzle help me contribute to society? I’m now really good at puzzles. Too bad there aren’t jobs out there that just want you to do puzzles all day. What that is is a time-filler so the teachers can have a break from trying to teach us something interesting or useful. You can’t get away with that in a regular classroom so why is it acceptable in special education? Because we don’t talk back and just do what we’re told or we get carted out of the room because we’re having a “tantrum.” I can tell you that all of the curriculum-developers and teachers would have behavior problems too if they were in our shoes and couldn’t tell anyone. What is the harm in spending puzzle-time reading us some classic books of literature or teaching us lessons from history instead? How could that possibly be less productive than giving us mundane tasks that kindergarten kids can do? I want to learn, not be babysat! In my special-needs curriculum, puzzles would be outlawed and we would read—a lot! I think you would find a classroom of quieter kids with fewer behavior problems that would go home each day feeling a bit more educated. Isn’t that why we are supposed to go to school? Aaron.
In my first post on this subject, I mentioned that I feel like my experience in special ed has been a waste of my abilities intellectually. The main reason for that is because of my inability to communicate completely independently. Because I can’t speak fluently or just sit in front of a computer and type out my thoughts without help, no one believed that I was in there and understanding everything that was going on around me. I learned how to communicate through a program run by a lady named Soma at her office when I was fifteen using a pencil and a stencil board. My initial conversations were brief because it was a painfully-slow method of pointing out one letter at a time, waiting for her to write that letter down and then choosing the next letter. During my twenty-minute sessions, I could only complete a few sentences. My dad figured out how to make it work on an iPad and that opened up my world. Over the five years since, I have become much faster at it and have become more effective at expressing what is in my brain. It has taken hours and hours of practice and a lot of patience but I feel like now I can truly communicate. But, there is a problem. For me to type, I must hold onto someone’s hand. I don’t understand it either but unless I do that, my mind is jumbled and I can’t focus my thoughts well enough to construct coherent sentences. I’m working on fixing this but haven’t figured it out yet. And, I can’t just sit with anybody and type. Again, I don’t know why. If it is someone that makes me nervous or if I feel like I’m being judged or graded, my mind goes blank. My parents have put in the time to make it really comfortable for me to type with them. My dad especially has worked with me a ton and it comes really easy when I type with him. We have even just finished writing a book of my experience with faith and have submitted it to a publisher. We’re still waiting to hear back, so my fingers are crossed that it will be available to the public soon. Anyway, at school, no one has taken the time that it would require for me to feel comfortable typing with them. So, nobody believes I can do it like my parents tell them I can. It is super frustrating because instead of learning age-appropriate things, I have been stuck at elementary-level material since I was in elementary school. I am so tired of counting coins that I could go crazy. Maybe I am not going to be a cashier! Let’s move on! How about teaching me something I’m actually interested in like history or literature or psychology? That would require some belief on their part that I was understanding those concepts. And would require a lot of dedicated time working on communication in the way that I have learned how to communicate. If I were teaching a class full of autistic children, […]
In five more months, my time in public school special education will be over. I have some mixed feelings about this. On one hand, I will miss my teachers and the routine of getting on the bus each morning and having a scheduled day. On the other hand, the last thirteen years has been a waste of time from an intellectual perspective. When I entered the public school system in the second grade, I was looking forward to being around other kids and learning some new things. The previous five years of my life had been spent doing full-time ABA therapy, mostly in my house. ABA gave me some useful skills but I hated the learning method. Breaking everything down into its simplest parts and then repeating over and over teaches you those steps but it doesn’t teach you how to learn on your own. Plus, it’s incredibly boring! I quit trying after so many years of it. My mind was beyond the mundane things that I was being forced to repeat day-in and day-out. So, I stopped making progress and my parents started looking for another option. We decided to try the public school and see how I did. That is when my world of IEPs and underachieving began. I want to be clear from the beginning that my criticism is not targeted at the teachers and support staff, as I found them all to be kind and dedicated to us. But, the system is flawed and the insistence by the administrators to use easily measurable metrics that are all evidence-based stifles the creativity of the teachers and causes damage to the students. The data that was collected month-to-month and presented at the IEPs never represented my ability or my intellect. The problem with autism is not intellectual capacity, it is communication. That is my disability. I am quite capable of learning things on my own and absorbing information from my surroundings. That is how I know what I know, not from any of the formal lessons that I was given in the special-ed classroom. I am writing this on my blog in the hope that someone out there will read it and have the desire and resources to do things a different way, with the kids in mind, not a certain percentage of data points that need to be met each year so that the school continues to get its funding from the government. I will be writing a series of blog posts about my thoughts and ideas. Please forward it on to anyone that you think might find it useful or helpful. I want to use my brain and my relatively-recent ability to communicate to help change things for other kids in my situation. Hopefully, I can make a difference somehow.
Today is my mom’s birthday. Birthdays are not her favorite day because it just means she is getting older. But I want to use this day to give a tribute to my mom whom I love and respect more than anyone in the world. My mom is the most unselfish person that I know. She always sacrifices her own needs first and makes sure that everyone else in our family is happy before she thinks about herself. The most amazing quality that my mom has is how she make me feel better when I am having a bad day. She has a sensitive radar that is always on high alert and can read my moods better than anyone else. When I’m feeling down, she give me a hug and a smile and lets me know that she understands and that she loves me. My mom has been through a ton just raising me and never gives up or stops trying. She is my hero and my best friend. I love her with all of my heart and know that God is preparing an incredible mansion for her in heaven that she is building brick by brick through her loving acts of kindness every day in this life. I love you, Mom!
I am looking forward to winter this year. It is beautiful here when it snows and I actually enjoy the colder temperatures. I love how snow makes everything seem fresh and clean. And I’m excited to take some trips up to Grand Lake and go cross country skiing. I tried it last year and really enjoyed it. I am trying to do new things and to also stay in good shape and cross country skiing is great exercise. I think I could get good at it if I work at it. Downhill skiing is fun but I’m having a hard time learning how to turn. It’s kind of an important skill, you know. For cross country skiing, you just have to keep your skis in the tracks and keep moving. I am good at moving! Aaron
So far, I have not made much progress typing on my own. But, my dad and mom are now trying a new method. Instead of holding their hand, they are now just holding my forearm. It is way harder for me because I can’t control my movements as easily but I think it is a good next step. When I try it on my own, my mind just becomes jumbled. I don’t get it, but that is what happens. For some reason, I need that physical connection with someone for my brain to focus. I am really tired of autism. I won’t give up though. What else can I do but keep trying? Thanks for listening. Aaron.
So, I’m trying really hard to improve my independence and being able to write without holding someone’s hand is going to be the key to that. Once I can do that, I think my life is going to change. I don’t know why I can’t do it. It makes me feel mad and frustrated with myself but I just have to keep trying. I think that it is like my marathon training. At first, I had to hold onto a rope to be able to keep running but now I can do it by myself with a reasonably solid pace. I’m still holding onto the “rope” with my writing but I just need to keep training and eventually, I should be able to do it on my own as well. My brain drives me crazy, though. Why can’t I just do it? I know that I’m capable. How long will it take? I have no idea. Aaron.
Last Saturday, I ran my second marathon. I established a new personal best of 4:01:28 which I feel really good about. I was going for four hours which I just missed, but it was still about twenty five minutes faster than my first marathon. I am happy because we pretty much only stopped at the aid stations and an occasional five-second mental break. This is way better for me because I normally need to stop running about every ten minutes. But, now I know that I can push through and that gives me confidence. From here, I just need to keep getting faster when I am running. I am also happy because I got to spend the weekend with my dad and my brother, Ben. Ben ran the marathon with us and killed it with a time of 2:54. That was good enough for the win and qualifies him for Boston. My dad also found out that there is a Boston-qualifying time for disabilities including autism of 6 hours, so I’m also a Boston Qualifier! And my dad has qualified before too. Now, he needs to run one by himself so he can qualify again. Then, we’ll shoot for Boston 2020. How cool would that be? I am grateful to be able to run and to set ambitious goals. I have good examples in my family to follow. Thanks Dad and Ben for letting me be part of that world with you. It is a life-saver for me. Aaron
It has been a long time since I wrote in my blog but I haven’t been idle. Since my last post, I have written a book about my journey of faith as a disabled person. I’m hopeful that since I kind of felt inspired to write it that Heavenly Father will open a door for it to be published. I’m glad to be done with that project and to have accomplished that goal. Now I am just going to focus on writing in the blog and trying to improve in various other ways. My dad and I are getting ready to run another marathon. I wanted to do it in a place that I have never been before so we are going to Illinois in September. We aren’t as well trained this year because we’ve had a busy summer but we should get through it. I was hoping to break the four-hour mark but we will have to see if the high-altitude training in Colorado will compensate for the fewer training runs. I hope so. And, this week we start another year in school. This will be my last year in the transitions program before I have to figure out what the next phase in life will be. So, I hope to make the most of it. Thanks for listening to me think out loud. I didn’t really have a theme for this post. I just wanted to get started again with something. I’ll think about something more interesting for next time. Until then, have a good end of summer. Aaron.
When I think about Easter, I think about Christ at the tomb after he had emerged with a resurrected body and before he had risen to heaven to be with Heavenly Father. I love that it was so important to him that he show himself to Mary before he left to complete the mission. To me, that shows about how much he loves each of us. He knew that Mary was grieving and that she was there early to show her respect by preparing his body. I assume that she wasn’t the only one that was going to be involved in that process. But she was there by herself probably after another sleepless night, mourning her Savior and friend. I love that it was her that saw him first because she was there trying to serve him. It wasn’t Peter or any of the other apostles. In fact, Thomas had to be convinced of her story. I love how Christ rewarded her for her faith. I love how she had so much love for him that she pled for his body when she thought it was stolen. I love how Christ was so kind to her. I love how Christ gently spoke her name and revealed his identity. I think Christ will reveal himself to us in the same way as we humbly serve him with an eye of faith. I love the example of Mary and that is what I’m going to focus on this Easter. Aaron
It is 2018 and I have been thinking about what I want to accomplish this year. First is to begin my service mission. It has been slower than I expected to get started but hopefully it will happen soon. That is my biggest goal for the year. But as part of that, I want to get better at writing and speaking so that I can gain more independence. I really would love to eventually live in my own place but I know that I have a long way to go to get to that point so I need to really focus on it as much as I can. Maybe my missionary service will give me good chances to practice some of those skills. Maybe I can bless others in the meantime too. I also want to run another marathon and do it under four hours. I think I can achieve that. I hope to climb a couple more fourteeners this year too. Over three years now, my goals have sure gotten bigger. I’m glad for being able to reach new heights. Aaron.