Since I started writing about our experiences I have been overwhelmed by all of the love and support from family, friends and complete strangers. There are moments on this journey that make us feel completely alone. Even moments when we are surrounded by people we love. And in some of those moments being alone feels safe. And in other moments being alone just feels lonely. And when I write about our experiences I remember that we are not alone. I remember that the reason I started this blog in the first place is to share our experiences. So many people ask us questions about our experience. It still catches me off guard when people reference personal details of our life. I think “wait, how do you know that?” And then I remember that I am putting it out there for the world to read. I am taking moments of our life and turning them into stories about our experiences. These stories detail our fears, our struggles, our memories, our failures, our wins and everything in between. Sometimes I do not know what I am going to write when I sit down. Sometimes a thought lingers in my head all day long and I cannot wait to sit down and write about it. And sometimes something comes to me so quickly and so clearly that I have to pull over on my commute home and write it down in my notes app on my iPhone. You see, these experiences are our authentic life. They may not come in order. They may not come close to saying everything I want to say. But they represent moments in time. Our experiences and our attempts to navigate something that we were not prepared to navigate. I’ve already said here that sometimes this feels like one big failed attempt to get it right. And in the moments when we question ourselves the most, I am learning day by day to give myself permission to be imperfect. To make mistakes. To do it wrong and then learn to do it better.
There is one particular question about this whole thing that no one has asked me, but it is a question that I am myself every single day. I think about our journey and about my decision to share our journey in this public way and I ask myself what Grayson will say about this experience when he is old enough to understand. And here’s my answer…
These are my words. My experiences. My struggles. My fears. My ups. My downs. These are things that we are experiencing as a family. Most blogs are the result of a conversation that I have with my husband or a friend or a family member. That conversation sparks something inside of me that I want to share. And so I sit down with the intention of sharing my story, our story. The only thing I know for sure about writing about our life is that I want it to be our truth. I want it to represent the good and the bad. I do not want to paint a picture of our life that is not filled with joy and happiness. Because we have an abundance of joy and happiness in our lives. But I also do not want to paint a picture that we are just breezing through this experience. We are challenged every single day. We doubt ourselves and second guess ourselves and replay situations that we could have done better. That we should have done better. I think back to that moment we received Grayson’s official diagnosis. I think back to the emptiness. To feeling completely lost. To feeling alone and uncertain and paralyzed by the fear of not knowing how to move forward. And then I remember moving forward one uncertain footstep at a time. I remember moments of complete numbness. And I remember moments of complete clarity. I think about all of the decisions we made putting together Grayson’s treatment and his treatment team. I remember feeling like these decisions were the most important decisions I would ever make for my child. And I remember that scaring the crap out of me. As parents none of us want to make mistakes. I remember telling friends that building Grayson’s treatment plan felt like the most important recipe I would ever put together. I felt the weight of the world as I chose just the right ingredients and just the right quantities. Because this was one recipe that I did not want to get wrong. I put a tremendous amount of pressure on myself. I doubted myself and I worried that I was doing it all wrong.
These feelings, all of these crazy intense feelings, are exactly the reason I am putting our story out there. I want my voice to matter. I want the experiences we are navigating to mean something. I want to see the pain and the struggle become something positive; for us and for Grayson. I want other parents faced with the same things to understand that they are not alone. I want the momma hiding under her covers afraid to face the world to know that I was exactly where she was. I want the parents struggling to pick the right balance between therapy and school, pulled out verses integrated, typical verses untypical to know that there is no perfect recipe. I want to give those parents the permission to do it all wrong. To fail. And then to pick up the pieces and put it together in a way that makes sense for their family. And if putting our experiences out there, our journey down the spectrum, then I know that when the time is right I can explain my choices to Grayson.
I know that our parenting journey will include explaining our choices to Grayson. I know that one day I will sit down with my son and we will find the words to talk to Grayson about his autism. I know that we will have to explain Grayson’s autism to Rowan. We will need to teach both of them about tolerance and acceptance and difference. We will calm Grayson’s fears about being different. We will create a world around him full of love and support. We will make sure that he feels safe and protected. We will help him learn to embrace his autism; the same way my husband and I are learning to embrace it today. And if he is met with intolerance; we will teach him to rise above it. I think this blog is the first step on our journey to teach Grayson about his autism. I know that Grayson will have a million questions. Many of the questions are probably things that James and I have asked ourselves over the past 15 months. And I want him to ask questions. I want to create a world for my family where we talk about the things we fear. I want us to give words to things that are scary, because sometimes just saying it out loud makes it less scary.
Every single word that I write here is true. But this is my truth. This is about my life as a mother to a son on the spectrum. I do not have autism and I will never understand what it means to live with ASD. I will love my son and support my son and I will fight like hell for my son. But I know that someday, when he is old enough, it will be his decision to live and speak his own truth. I know that his experiences will be different from ours. I know that watching him struggle, watching him in pain is the absolute worst feeling in the world. And as we move through our life together we will surely face struggle. We will surely face pain. But we will push forward. We will never walk away from a bad experience without learning something from it. We will do the wrong thing. We will learn to go back to the beginning and try again. And I know that I will be prepared to help Grayson along his journey. I know that because of this journey that I am on right now. All of these experiences will help me teach Grayson and Rowan to pick up the pieces and move forward.
When I think about all of the millions of ways I will surely embarrass both of my boys during their lifetime; sharing a blog that teaches awareness and acceptance seems like the least of our worries. My job as their mom is to teach them to live an authentic life; and that is exactly what I am doing. One mistake at a time. And so here, in my safe place, I tell you that I am not perfect. I make mistakes. But this blog, sharing these experiences, is not a mistake. And I will teach my sons that sometimes when you have something to say…you should just say it.