Last night I went to the Tim Tebow Night To Shine Prom. It is a prom that is sponsored in churches across the country for people with special needs. It is beautiful, and such a fun night for me and my friends. It is a night where I feel special and appreciated. I have to say that I looked rather handsome in my suit and tie! It made me feel like everyone else and that I didn’t have autism. That is not an easy thing to do!
The thing is I never got to do this stuff when I was growing up. It was no one’s fault that people didn’t know I was in here and desperately wanted to do the things that others do! Now it is my life’s goal to make up for lost time. I think that it is a good mantra for everyone. Life is short and it needs to be lived now!
Because I have autism I am dependent on others. This makes me so vulnerable. It is scary to think about what is in store for me if my parents die. It is a fear that keeps me up at night and I think about a lot. I have a brother and a sister and I think that they are going to step up to the plate, but I don’t want to be a burden to them. It is a lot of work to watch out for me. I need someone to plan my whole day, to plan my meals, to drive me everywhere, and to deal with my crazy autistic behavior. It is no job anyone wants to do for their entire life. Even though my parents do it so selflessly, it takes compassion, patience, and endless energy.
I think of all the people that work with us as a profession and I am incredibly grateful! They have been like family to me! Michelle, Lauren, Diaayah, Nija, Emily, Tom…..you always treat me so respectfully. Thank you for that!
It is infuriating to me when people call us retarded! It is one of the most hurtful things that you can say to me. I think that it sets an understanding that is not based in truth.
We are as far from retarded as you can be. It is easy for people to think autism is an intellectual disability because of what we look like on the outside, but spend some time with us and you will see differently. I am able to understand complicated math. I understand Italian. I can process more than one conversation at a time. I have a memory that never forgets anything, and it is like a computer in that everything is stored away and can be retrieved at will. It is hard for me to access memories when others ask me to, but when I do it myself for some reason it is easier. I don’t know why but it must be something about the way my brain is wired.
I think that it is a cruel thing to make us so smart with no way to show it! It is going to take some time for science to realize our potential but I am confident it will. I see the change starting. I hope I am here to see how it evolves.
I love my family so much. I have a sister and a brother, both of which are so loving. They always include me in everything. It was not so easy for them in the early years! I required a lot of my parent’s attention and they probably got less time with them because of me. It is not fair but it is the way it had to be. They are not resentful and for that I am grateful. It is a tribute to the way our parents raised us. They treated us all the same. They took us all out together to parks, birthday parties, and excursions. It was not easy for my mom because I was the oldest. Both my brother and sister were very active. The outings often turned into mom running after us. Good times!
My dad is a very busy physician so he worked long hours. I don’t know how my mom had the energy for it all. We had many state funded helpers over the years who became like family. Skye Pardini, Colleen Marlin, Kelly Larson, Kelly Brown, Deanna Weintz to name a few. Thank you for your help. It made our life so much easier! I also want to mention my wonderful Aunt Lori and Uncle Peter, Jessie, PJ, and my grandparents. There was always an abundance of love to go around. How did I get to be so lucky?
The family is the most important thing for the well-being of a child and this is how I am able to write this blog today. Thank you my beautiful friends and family. I love you all.
The thing I hate most about autism are the seizures. I started having them around age 19. The first one was absolutely terrifying! There was no warning and no way to stop it. I could see and hear what was happening around me. The thing I remember most was hearing my mother screaming and saying to call the paramedics. It was impossible to control my arm and it was flailing above my head. I believe that I saw an aura but I did not know it meant a seizure was coming. It is the worst feeling to know one is coming! It seems like it lasts forever but in reality it is only several minutes. Afterwards I am terrified that I will have more.
It is better now that I am on medication but the thought is always there about when the next one will be. Recently I had one in the car with my mom. It ended a three year streak seizure-free. To say I am disappointed is an understatement. This means more blood draws and more meds.