Let me start by saying thank you. To each and every person that has sincerely tried to hear out my fears, let me vent the worst of the worst of me and of our situations, and shared hopes and dreams and failures with me. I appreciate you. I really do, believe me. But I have to confess something to you. Something down to the very core has changed for me, and I will never be the same person you used to know again. God willing, I will be a better person, but there is no going back to who I was before the diagnosis.
I know a joy like no other, parenting my two beautiful boys. But, I also feel very alone, anxious, and defeated at times. It is nobody’s fault. But, it is true. The fears I face are unique. The battles I fight are exhausting. The worry I will do is on a different level than I have ever worried before.
I see the looks people give. The smile that sort of fades into an awkward look and silence, while they try to relate to what I am going through, but they can’t. They want to help, but don’t know how. They try to reach Lucas, but don’t yet know or understand his language and triggers.
Then it happens. I have to choose him over you.
I have to. Maybe as he gets older, he will learn more strategies to regulate his words and behaviors more easily and more independently. But for now, I have to focus all my attention on him in order to get us through each task. I have tried not to do that. It usually winds up in him hurting someone else or himself or coming very close to it. Or, it results in him escaping. He does that you see. It’s something that must always be at the forefront of my mind, whenever I am in his presence, and explain to anyone who agrees to watch him. He will escape, in a heartbeat. And, before you know it, he will have climbed the highest thing around, or run out of the door to the place we thought he was safe in. He will do things you wouldn’t expect, and so I must expect them. All the time. So, please understand. I really do want to maintain a relationship with you. But he consumes me, and that is OK. It is my role as his mother. I hope you can accept this change.
If I try to hold him in my arms or lap while we talk, I might not really get everything you are saying. I will be dodging ear pulls, eye pokes, choke holds, knees to the throat and chest, and blocking him from hitting his head as he thrusts his body this way and that and upside down. You might smile. You might try to distract him. But this is my life now. A constant involvement in his safety and well-being. It takes most of my brain to handle, at all times.
I spend a lot of time wondering. Will people love him? Will peers want to be his genuine friend? Will they try to understand him? And will they try again if he didn’t respond after the first attempt? After their second and third? These questions are hard enough for regular parents, but adding a disability, a challenge to understanding him makes them specific to this situation. Will he feel lonely? I wonder, If I were disabled, who would take care of him.
And bless you, if you have brought another child around for him to play with. I have to inform you though. My child might snatch, he might bite, he might kick, he might shove, he might yell, he might want things only one way over and over again, until your child wants nothing else to do with him. Please help your child understand, Lucas is just trying to understand how to connect with them in a way that makes sense to him. He probably won’t use the toys the way your child will. It will take all of my attention to assure your child’s safety, while you try to have a conversation with me. I will always be watching him, more than I am able to pay attention to the conversation I am having with you. He will probably climb into or on top of something you would have never pictured possible. He might use strange words that don’t makes sense to you or your child. He might demand that no one else can touch a certain color or item. This is his world, and he is trying to share it with you.
You see, autism has changed me. It has consumed me. It is not going away. I really do miss who I used to be. I’ve had to mourn my old identity. But I am also honored to take on my new one.
So, for those friends and family who are in this with us for the long haul, please be willing to give up the way things were, so that we can move forward the way things are. To those who don’t or won’t get it, I will cherish what we had before I changed. My world is different now. And to my new friends, who I have met on this journey, who are going through the same battles and joys, welcome to my life. I treasure you as well.