It is ok if you do not know what to say to someone going through something that you cannot relate to. It is normal for you to feel unsure or uneasy about coming up with the right words. So many times I can see that people are struggling to understand how to talk to me about our life. I can see it in their nervousness as we talk. I can see it in the way the conversations seem to go on but really never go anywhere. I can see it in the conversations that are not happening anymore. I get it. You don’t know what to say. You are worried about saying the right thing and even more worried that you may say the wrong thing. But, to be honest, I don’t need you to say the right thing. I just want you to say something real. Talk to me in a real way. Because what I am going through is very real. The last thing I want is for every conversation I have to be about the things in my life that are hard. But, I need for it to be something that we acknowledge. I spent almost a year “in the closet” and now that I am out I am ready to talk to you about all the pieces of my life; even the messy ones.
Don’t worry, I’m not going to dump my life in your lap. I’m not going to overshare and give you the gory details. Our gory details circle is a pretty small and tight group. The people who are going to get those details know who they are. They know that with no notice I might fall apart. They know that sometimes I cry when I’m happy and sometimes I laugh when I am sad. They know that I am taking life one day at a time. And no matter how comfortable (or uncomfortable) it may make them they would never make me feel that way. So you do not have to worry about the yucky stuff.
Let’s talk about life. Let’s talk about treatments and prognosis. I’ll tell you how incredibly far my amazing son has come. I’ll tell you that I have more days that are filled with hope than sadness. I’ll tell you that we are doing our best. I’ll tell you that we hope to put gray in traditional 4K but we have some hurdles to cross this summer for that to be a real option. I’ll tell you that this year has changed me. Changed me in ways I struggle to explain.
Sometimes it is the relationships that are the strongest that suffer the most when something, or someone, changes so abruptly. Because I’ve changed, and because we’ve changed; maybe our conversations are different now. I don’t blame you. I’m not mad at you. I don’t feel resentful towards you. I am not jealous of you. I get it. You see, some people are really great at growing together and other people struggle with it. Maybe you don’t know how to talk to me. Or maybe my life, in all of its scattered pieced glory, is just too much for you. I get it. It’s too much for me too sometimes. I have room in my heart to understand that people grow and people change; and I have room in my heart to believe that one day our conversations may be back.
Then there are the casual simple conversations with almost-strangers that fill me with so much joy. Just last weekend we ran into the parents of friends from high school. We had such a lovely conversation about life. A real conversation about my life and the things I am facing. And a real conversation about things that they are facing in their live too. And then we gave hugs and said our goodbyes. I left that brief conversation feeling so much joy. So much happiness that it was so easy for them to talk to us about things that are hard. It made me wish that all conversations were that easy. It made me feel like autism maybe wasn’t quite so scary.
I know it’s hard. I know you may not say the perfect thing. And I forgive you in advance for being nervous or hesitant. But the next time you see me or someone else living on the spectrum; promise me that you will have a real conversation with them. Because if we all stop being so afraid and so nervous to talk about autism then we can take the power away. We put the power back in our hands. I learned this year that things are only as big and scary as you let them be. Sure, there are days when all that we face scares the heck out of me. But those days are getting easier to handle. Why? Because I took back the power. I’m talking about it, learning from it, and now I’m putting it out there in a very real way for other people to think about.
I know you are worried about saying the wrong thing. Sometimes I don’t know that something will offend me until I hear it out loud. And this, like autism, is so specific to each person going through it. As part of my mission to put our message out there; I will share a few thoughts with you on the “what not to say list.” But please remember, this is just us. Someone else might feel completely different:
4 things I prefer not to hear…
- The word autistic. I hate it. We choose to see autism as one part of gray. I prefer not to call him autistic because I refuse to let autism define him. He is Grayson; Grayson has autism.
- “That’s not autism it’s just ________” (three, boy, a phase, etc.) Look, I get it. Sometimes Grayson’s behaviors look like every other three year old boy. But sometimes they do not. James and I have seen all of it. We live through the ups and downs every day. Try to remember that life is so much more than the one moment of time that you are seeing.
- “He will grow out of it.” Actually, he won’t. Autism is a lifetime diagnosis. While early intervention and intensive therapy are the most proven treatments to minimize symptoms as Grayson moves through his life; he will always have autism. He will learn to cope. He will learn to replace his instinctual behaviors with more socially appropriate behaviors. He will learn to have appropriate emotional responses. But he will always have autism.
- Any time someone tries to draw comparisons to Grayson from someone else they know with autism. Stop! They are not the same. Every child with autism is unique and different. And every parent NEEDS to see their child this way. It is part of the process…part of the survival. Sure, the social markers and many symptoms are similar. And you may know that gray’s limited eye contact is a symptom because so-in-so’s child who has autism also has poor eye contact. Instead say this “I notice gray makes eye contact occasionally, that’s great.” This conveys to me that you know something about autism, it acknowledges something real about Gray, and it is positive.
Let’s talk about things that are real; even if they are difficult. Let’s show people in our lives that even though we cannot relate; we are trying. Let’s talk to our children. Let’s teach our children acceptance (by talking about it) and tolerance (in the way that we talk about it). My biggest hope is that Grayson provides an opportunity for people in our life to talk to their kids about difference and inclusion. Because if I have learned anything over the past year it is that the actions of other people impact this journey we are on.
Just remember, you don’t have to be perfect. You can slip up and say the wrong thing. If you say the word “autistic” I may gently guide you to different wording, or I may not say anything at all. Every day, every conversation, is different. Let’s all be real. Let’s all be compassionate. Let’s all be better.
In honor of April 2nd – National Autism Awareness Day. In honor of Grayson.