(Posted December 8, 2020)
My name is Aidan and I am 15 years old (16 on Nov 28). I was born in San Diego where I still live. My dad is an Occupational Therapist and the Therapy Services Supervisor of the San Diego Unified School District. My mom is a muralist, a writer and the founder of the Flourishing Families Guide for families in San Diego with children with disabilities. It has 1200 resources and she has been working with the San Diego Family Magazine to produce it for 13 years. My brother is an upright bassist in one classical and five jazz ensembles. He is a senior in high school.
I like gaming online, animals (especially dogs), gardening and cooking. I go to a non-public school for kids with mental health challenges. It allows me to learn in a less stressful environment and to take a little longer to get my diploma if I need it. I like traveling, Hawaii, camping and hotels with soft beds. I wish I could go on vacation more often, but we need to save up. I like shows about animals and survival.
I have two best friends who have Autism, but they are very different. Both of them have parents who are divorced. My friend Soren, who lives with his mom, is quiet and smart and is very patient with me. He likes Minecraft and building things. He travels to Europe a lot. My friend Aidan C. loves Mario and Pokémon and he lives mostly with his dad and grandpa and sometimes his mom. They do a lot of fishing and camping. I have other friends, but these are my best ones.
When I was born, I was very sick and couldn’t breathe. They took me to a hospital that specializes in lung transplants. There, a genetics doctor noticed features on my face looked like other kids with 22q 11. Deletion Syndrome, then called DiGeorge Syndrome. After my diagnosis was confirmed by FISH test, I was sent to a hospital known for heart surgery and they helped reconnect one branch of my pulmonary artery, which was wrongly attached to my aorta, back to my lung. This is called truncus arteriosus. I have also had inguinal surgery, multiple ear tube surgeries, a couple of bone breaks and full rod implants to correct my scoliosis and kyphosis. I am a surgery champ.
I learned the most about how 22q affects my brain at the MIND Institute at UC Davis. Dr. Simon and his doctors let me be part of a study about stress and how the brain works. My mom and dad learned a lot and so did I.
I was fully included in a regular school until 7th grade. I was doing well in school until 6th grade when the amount of schoolwork and homework got to be too much. I started throwing up every day and I moved to a non-public school with smaller classes. I have an IEP that lets me use tools like a calculator and a computer to type instead of handwriting. It is easier for me to type. I can take as long as I need to get assignments done and a few extra years to graduate if I need it. I like science. I don’t enjoy math and PE because I don’t like it when people are aggressive.
At my new school, there is a social skills group where I can talk to friends about my worries and we have jobs we get paid for. I miss all my friends at my old school, but I made a lot of new friends and there is a lot less stress.
Growing up, I played baseball and went to Cub Scouts, but I did not like the same things as the other kids, so I had to find ways to have fun. I have a trampoline, a stationary bike and a hot tub I use daily. I like to go on walks with my dad in our neighborhood. We like to travel to national and state parks. My family likes to hike, but I do not. I go to be with them, but I like s’mores and camping. Sometimes we go to the ocean. I like to play close to the shore. I have a fish tank with five fish, three snails and some plants. I like to play video games and I have a lot of stuffed animals.
I have received several awards for GRIT for sticking with things I don’t like to do. I have received awards for science because I had a super cool science teacher who didn’t get mad at me for speaking out in class and who let me help with experiments. I just got an award for art that is also mostly for GRIT. I don’t really like art, but I try really hard and my mom helps me look at projects I don’t like in different ways, like using seashells I collected in northern California to make a fish shape on wood.
I am proudest of how I survived so many surgeries and that I am a super good friend. Being kind is a very good trait to have.
I don’t think about my 22q much. I can’t change it. The only time I get frustrated is when my brain doesn’t let me think clearly, or when it tells me things that aren’t true, but it’s ok to take a break and ask for help when that happens. Sometimes I get super scared for no reason. This completely sucks when it happens. I just need a lot of hugs and to be close to my family when this happens. It usually happens when I get too stressed out.
I take medicine to focus and to lower stress. I am better when I take this medicine. I would tell parents not to be afraid of medicine, as long as you have a safe place with friends to talk about feelings too.
I was super scared about back surgery because they cut down my whole back, but it was the best surgery I ever had. The pain went away and it made it so much easier to sit comfortably. I am so glad I did it. I would tell kids not to be afraid of surgery because it might hurt for a little bit, but your life is better afterward. I have a garden with all my scoliosis braces planted with strawberries. It’s like a happy graveyard. I don’t have to wear them anymore.
You don’t always have to come in first or win awards. You are not just a superstar if you are great at something. Sometimes it’s super to be the person who encourages other people to win or to not feel bad for not winning. That is one of my strengths.
I want to have my own apartment and a dog. I’d like to have a job to make enough money to play games and have fun with friends. I want to be close to my family and to travel to fun places.
I have to be honest. I do not want to go to college. I like my teachers and my friends, but I don’t really like school and I can’t wait for it to be over. I’d like to have a job taking care of animals. It doesn’t matter to me if I’m rich. I just want to be near people I love.
Covid has been hard because I can’t see my friends in person, but my mom and dad relaxed the computer rules so that I can spend time talking to them online. I am happiest when I am making friends laugh and smile. Having friends and love in my life is what is most important to me.