Communication And Autism

It is amazing people can finally hear the thoughts in my head, but at times it can be a bit overwhelming. Being talked to like an adult is my dream come true, but being asked constantly why I am doing what I am doing exhausts me. Half the time I don’t even know why people do what they do. Maybe my mom and dad want to understand my motives for some of my behaviors, and that is a good thing, until I don’t even know myself!

Take for example when I told them I wanted to stay home instead of go to my grandmother’s funeral. I told them I was scared to go, not because I am afraid of death (which I am) but it was because I was afraid I might do something inappropriate like laugh or some other ridiculous thing my body does at the worst moment. Can autistic people explain why our body does this? Autism and I are a pair of goofy twins who act as if we are crazy at times!

One way autistics can feel more comfortable is to be surrounded by accepting people who won’t judge us by our out-of-control bodies. Talking about out-of-control bodies……autism made me watch a video of christian children dancing along to hymns about 200 times yesterday.

Try to explain THAT one!

The Way Autism Makes You Feel

Autism and I feel like all of my nerves are on high alert at all times. This is a double edge sword because it can be overwhelming. To be alert and aware of everything going on around you sounds cool, but it is distracting! How would you like to have cicadas buzzing in your head as you are trying to listen to a conversation? Not fun!

I am also distracted by a number of things like smells and sensory experiences. At church one day I smelled something bad and I announced VERY LOUDLY that I thought my mom farted! This is what autism does! Thank God my mom has a good sense of humor!

Yes, autism has a bad side, but it has a good side too. I think the synesthesia I have is beautiful. Talk about beautiful colors! All of them are so vibrant when I hear music, like a gorgeous rainbow and symphony at the same time! Do you see why autism can be cool? Take your neurotypical self…..I am choosing to stay autistic any day!

Just don’t fart around me because I will announce it was you! HA HA

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Have You Ever Talked To A Spirit?

Have you ever talked to a spirit? I did last night! I think my grandmother came to me in my dreams and she told me that I was a special person who was going to do some amazing things. At first I was scared to see her, but it became comforting to me. I think she will be a guardian angel for me and watch over me.

She and I were not able to see each other alot but she was one of my biggest supporters. I think she thought that my autism would disappear magically someday and I know that will never happen, but the restraints of autism certainly have disappeared. Take me back to the days when her and Pop Pop would visit for Thanksgiving and stay for a month or so. To me that time was precious and full of love. Take me back to our visits to Florida to see them. There was always laughter and fun times. You knew you were loved and supported. Pop Pop was always ready with a corny joke and Grammy was always ready with a vacuum and Pine Sol to clean up whatever mess would occur. They found videos for me to watch and had things set up to make me comfortable. At the time I was younger and I didn’t appreciate it, but I do now!

Yesterday in my dream Grammy told me that autism and I are going to change people’s perception, and I hope she is right. Autism and I are going to try to make her proud! Take me back to before she died and she told me on the phone how much she loved me.

Take me back…..please. I miss her!

The Autistic Boy Who Missed His Grandparents

Being autistic and not being able to speak made people think that the autistic boy didn’t have feelings like everyone else, but he did! The boy was sad because his Pop Pop had died, and now his grandmother did too. Back when he was young his grandparents always told him how smart he was and that he was going to be famous someday, even though no one else thought so.

Autism and the boy were depressed because he was feeling alone and he missed them. In his prayers the boy asked God if he could see them again. God replied “Be brave and know that you will see them again, but it won’t be for quite some time. You have things to accomplish here on Earth first.”

So the boy did what God said. He put on a brave face and he continued with his plan to show people that autistic people have feelings too. At the end of his life his grandparents were there to bring him home, and he realized that life has to keep going and that although you miss your loved ones, God has an amazing homecoming waiting for you with everyone you ever cared about.

Be patient and make the best of your time here first.

Memorial Day

A day of remembrance and gratitude

for brave lives lost

in protection of our rights.

A day all of us pray for their souls

and thank them for their ultimate sacrifice.

A day all Americans think back to the past

but look to the future and appreciate America and our lives here.

I am proud of our soldiers.

I am proud of our country.

I am proud to be American.

And I am proud to call this place home.

Grammy

My Grammy died last night and I am sad but glad she is no longer in pain. To Grammy a clean house was a happy home! There was never a speck of dust to be seen. Grammy and Pop Pop were big supporters of mine and they always said I was intelligent and that I was going to make something of myself.

I am going to miss going to Florida to see her, but I know I will see her someday in heaven. Grammy and Pop Pop are finally reunited and getting together with family. I am sure that all of them are glad to see each other again.

I love you Grammy and will remember all of our good times together.

Until we meet again.

Autism And Communicating With My Doctors

Today I had a medical appointment with my neurologist. I am always elated when I have a visit in which they listen to me and talk to me as if I understand. At first I am nervous because I realize they may not be a believer and may be skeptical of my communication skills. Today gave me such encouragement because both the fellow and my doctor believed wholeheartedly and wanted to learn about autism and why we do what we do.

Being a physician and learning that what you were taught might be wrong must not be easy, and autistic people like me appreciate those doctors who are willing to change their mindset. Neurologists and pediatricians need to believe in us and encourage our potential because it can change the trajectory of our lives. Luckily I am surrounded by such amazing allies and supportive doctors. I am a lucky and well cared for patient!

Thank you Dr. Davis and Dr. Becker!

Avalon And Summer

In July we are going to Avalon and I am so excited! It will be our first time back since 2014 and a welcome change from the pandemic. I am looking forward to doing a few of the activities we used to do like the Cape May Zoo and the Ocean City boardwalk rides. I have wonderful memories of those places!

Talking of my childhood, I also have wonderful memories of Storybook Land and Dutch Wonderland during the Christmas season. We would ride all of the rides under the twinkling lights and visit with Santa. I am always thankful for these memories.

Avalon with my family this year will be especially fun. I am now able to bike ride so I am looking forward to that. To me, Avalon and love go hand in hand. All of my memories involve laughter with my family and warm feelings of belonging, and this I will never forget!

Thank you for that Avalon.

Book Club

My most favorite thing right now is Book Club. I am reading books I should have read in school and was not given, because people didn’t think I would understand them. Autism and I are making up for lost time. At Book Club all of my friends are able to speak freely and without reservation. All of us are highly intelligent and have so much to say! It is a place where we can respond to each other and give feedback. Can you imagine being friends with someone for many years, sit next to them everyday, yet not be able to say a word to them?

Book Club is social hour for us. I am going to be in a documentary about Spelling To Communicate and they filmed us today at Book Club. I think they were amazed by our abilities and our insight. Autism and I are so excited and proud to be a part of this!

Netflix here we come!

Back To A Time Before Autism

I think autism began for me when I was about 3 years old. I am thinking it began after I had a case of chicken pox, but I am not sure. I am able to remember bits and pieces from that time, and I remember I was very sick and itchy. Autism developed slowly after that. I lost my ability to speak and began withdrawing. It was a scary time and I didn’t know what was happening to me. Autism and I were a pair! My parents always tried every therapy but nothing worked.

At around age 5 my language started coming back and I could recite some words, but I sounded like a deaf person and my pronunciation was off. I am able to pronounce words much better now, but I am not able to hold a conversation. You are able to understand but not respond and that is so frustrating.

For autistics like me, scientists need to figure out why this happens! I think autism could be avoided in some cases. But I am also a realist and think that maybe it would have happened no matter what. Take your autistic loved ones to their doctor appointments and always get their vaccinations. I sometimes wonder if I didn’t get chicken pox, maybe I wouldn’t be autistic. At first autism was more severe but it got better as time went on. Hopefully that will keep happening!