Hi. It’s been a long time since I’ve posted. Mostly because I’ve been in too much pain to write. Just really want to thank everyone who has supported me during the past few months.
Spellers, including some I have never met, have helped me with my challenges. That means the world to me. They have inspired me to press on. Trust me, when we work together we can really do great things.
Understand that I also appreciate my speaking allies. But it means so much that people like me are taking the lead in fighting for change.
Here’s a link to an awesome video made by some friends of mine in the Spellers & Allies Advocacy Network: https://vimeo.com/492544654
Last weekend was great. My friends and I participated in a symposium at Jefferson. Not to brag, but we rocked it. Really loved representing my non-speaking peers. We discussed how architects can improve spaces for autistic people. It was so wonderful to be listened to by professionals. Spelling partly gives me a voice, yes. But I need others to respect that voice. Sunday that was the case and it means the world to me. Really want to thank Wendy Ross for making it possible.
Listen to me: KEEP STAYING HOME. I don’t want anyone to die. First of all, I am worried about my grandparents, especially Poppas, who has stents. Everything is messed up right now. We need to look out for each other now. Please help me keep the people I love safe. Thank you for listening.
It has been a trying time for me. I have been on a journey to rediscover what makes me feel truly present in my daily life. If you are reading this then I am sure you are aware of my history. I spent the first 16 years of my life with very minimal communication. Just enough to communicate the basics. When I found spelling to communicate it changed my whole life for the better, but it also meant that my whole life changed. I was no longer the player on the sidelines, I was the quarterback. Ask Foles, it ain’t easy. It meant the decisions were mine to make. I have to admit that it gets hard. Some days I find myself so overwhelmed by the responsibility of making the right decisions. It might sound crazy, but it is new to me. I share these thoughts as a way of saying it’s okay if sometimes life gets the best of you. I can admit that I feel that way sometimes. But in this next season of my life I want to be as present in those moments of uncertainty as I am through every victory. This is how to make the most of the time we have.
It is easy to look at Martin Luther King with admiration for all that he accomplished in his abbreviated lifetime. It is hard not to look at his with awe! In reflecting on his life I realize a lesson that resonates with me deeply. Dr. King was an unwavering example of what it means to stand up for what you believe in. But even more so, an example of how to do it with poise, respect, and integrity. There is so much bravery in standing up for your beliefs. It requires honesty and courage and puts you in a vulnerable position. But what requires the most courage of all is when you can stand up without tearing others down. When you can share your views without belittling someone else’s. When you can speak your truth without needing the rest of the world to agree. This is where Dr. King set the bar high. As a non-speaker I have dreams of equal rights for people like me. I have a vision for a world that no longer views differing needs as a deficit. But what MLK did was inspire me to lead by example. He taught me to be the example of the changes I wish to see. I hope that with my advocacy I can pursue a legacy of equal rights for all people.
During this time of year, with holiday parties, Christmas shopping, and the general noise of the holiday season, we forget to stop and be truly present. I am guilty of not remembering to use this time of year to stop and reflect. In so many ways this time of year is a gift. It’s an opportunity to reflect on the time gone by and be with the ones we love. It’s a cliche but the true gift of Christmas is the gift of being together. I want to challenge you all to look beyond your shopping lists and holiday agendas and instead reflect on what it is you really need. Think of the lists your heart and mind might craft. Do you need more inner peace? Do you need the courage to pave a new career path? Do you need the confidence to stand up against a person who makes you feel small? Maybe you simply need this little reminder to look within yourself for the answers. What I need this year is a reminder that to be fully alive is to be present in all of life’s moments. Merry Christmas everyone!
This Thanksgiving had me hard-pressed to feel grateful. Different playing yourself than being yourself. Probably we push too much to be what society only expects of us. I am not printing what is expected of me now. The reason is that I want to be honest.
Please understand, until quite recently I was not feeling well, probably from stress. Stress is a terrible thing. Yes. Not wanting to upset people, I tried to carry on. “Trying” cannot really represent what I was doing in effort. With too much stress, I became someone I didn’t like.
Now I feel good about not blaming myself. My first challenge was to accept that I am only human which means I am not perfect. Life’s challenges got the best of me, but I forgive my human flaws. My second challenge is to persevere with the idea that I come out on the other side stronger. In time perhaps I will grow to view these challenges as character-defining, but presently I am pushing to no longer feel like a shadow of my old self.
I do not share these thoughts so that you will feel sorry for me. I am grateful in many ways for all that I have. I share these sentiments as a message for anyone else struggling to fit the mold society expects of us. I want to encourage us all to be more raw and authentic in our expressions of how we feel.
I want to be honest in saying that not every season in life is good. This past year did not lend itself to much celebration and that’s okay. I am choosing now to be open about the struggles because I want to lessen the stress and just be me. I am sure everyone has felt this way at some point so I hope my vulnerability encourages you to be more honest about what you are going through. Stress, anxiety, sadness – they don’t make you weak and they are nothing to be ashamed of. Don’t just play yourself…..Be yourself.
A little over a week ago I watched hundreds of people gather in support of a non-profit that has been critical to my journey of finding my voice. Although I am incredibly grateful for what AALIVE has done for me, what stuck out most to me was the love and excitement that filled the room. Every inch of space was bursting with the energy that comes when people gather together in support of something that matters. In this room I saw how powerful the human race is when we come together with a common purpose. I have attended this event before but this year many of my nonspeaking friends joined in on the fun. It showed me a glimpse of what it will be like when we all come together to create the inclusive world I dream of. It is encouraging to see how the AALIVE community has created a community of people who share this vision. I see so much possibility in the union between the neurotypical mind and those with differing abilities. I believe that we are stronger together and I am grateful for all those who stand with me in that belief. Thank you to the AALIVE community and everyone who continues to come back each year in support of a brighter future.
I want to share words that mean so much to me, those are “You are in control.” That means the world to me. For so long I had no chance to exercise control over my life. It’s hard to describe how that feels. Now that I can communicate, it is liberating. Try to imagine what people without communication fee like every day. You can’t really do it, but try. Then try to imagine how it would feel to go through life like that. That is how I lived for sixteen years. Probably you are thinking, “That would suck”. You are right. Trust me, it did. Trust me, other people still feel this way. Train yourself to see non-speaking people as fully human. We deserve your respect.