“Just tell me.” “Just say it if you’re going to” and ” You can talk.” Three phrases that can send me into an upset. Phrases that may be said without any intention. And yet, they still make me wince in a unique way. Quite frankly, hearing these phrases hurts. It brings back memories of times that I was misunderstood. All those memories of “just tell me” all at once. It’s just too much. Every piece of holding it together, every attempt may be lost. I may cry. “Stop crying” won’t work. I cry from a sense of feeling lost, I cry because I need to get it out.
You see, 6 years ago I didn’t understand why it was easier when I would write some things but not say them. Was it a choice I was making? The parts just didn’t make sense. I was confused. But deep down I knew that if I could “just tell you” I would, because why would I want to go through so much just to be heard? Then, I learned that I wasn’t dreaming or making these things up. It was indeed easier for me to communicate certain things by writing or typing. I still wondered why. I really don’t know. What I do know is that my brain works differently. I know that when I say “I don’t know,” I may not mean that. I may mean that I am just having trouble getting the thoughts out. Five years ago, I started using a communication app on my iPad. This was hard. After all, what will people think? I mean, I can talk! Pushing through the fears and self-conscious thoughts with the help of wonderful people, new doors were opened, not overnight, yet slowly over time. My writing and typing and using my device or talker has varied in usage over the last five years. But… you see, I know it’s there. That matters.
I know deep down that my words no longer have to remain stuck. I know that with help, support, trust, love, acceptance, and practice that I can work through it. I also want you to know that I don’t type for everyone. It’s not that easy. It’s hard sometimes for me to type and put all levels of perceived judgment aside. It takes connection, trust, determination, practice, and more. When you first meet me, you may think “wow she’s so verbal or so high functioning.” But do you know the lines deep within? Do you know my journey with the iPad? The little moments that I celebrate that have been nothing short of a miracle. The hours of time I put in? The leaps and hoops I jumped through? Please, please try not to judge, try not to assume. Try to approach it with an open mind, as I have learned to do. Try to accept that we may not know “the why.”
My words are my words no matter how I say them. I have an all-around voice, a way to “just tell you” even when it’s hard. But sometimes, the hard is, well, hard, and I have to work through the tears and emotions. Honestly, this can still be difficult for me to do alone, but with a village, a team, I can do anything.
Excellent summary. Proud of you. Love, grandpa.