The early stages of a life with a child on the autism spectrum are intense. At first there might be fear, sadness, mad scientist type research, loss of hope, and no sleep. Some of those attributes may increase or decrease over the first couple years.
As a parent, you’ll try to stay one step ahead of everything and may get discouraged when you realize you’re always two steps behind. Then you’ll gain a little confidence when you notice that you’re adapting to this new way of life. People will tell you that they don’t know how you do it. Your immediate thought will be that you don’t know either. You’ll get accustomed to those comments though, and your reply will start to be more like, “We just do it.” I lost count of how many times I’ve said, “Our ability to parent our child has adapted and changed as our child gets more intense to parent.” I’m pretty sure that if you threw me into my situation now without any preparation, almost 12 years in, there would be catastrophic failure.
There reaches a point, and I think Jamie and I are there, when the shock wears off. The fear is gone, and certain hopes are restored. Let’s call it the plateau.
You get into a rhythm. You know the triggers, you know which battles to fight, and you’ve established there might not ever be growth in certain areas but you keep trying. That’s where we’re at. You’ll get there too.
Your life will revolve around autism, but you’ll learn not to make it the main event. The new normal might not be what you expected, but to you, just using the word normal to define your life will be a breakthrough.
Once you establish this new groove, you’ll live in a way in which autism doesn’t get to define your child or your lifestyle. The keys here are hope and thankfulness. While many things won’t get easier as time goes on, you’ll find paths of hope as you you try new things. And by focusing on the small bits of thankfulness instead of all the difficult aspects, you’ll come to recognize the awe and wonder of this life.
We have an enormous amount of challenges facing us and our boy. We don’t know what the future holds. But the plateau has given Jamie and me a chance to catch our breath, and consider that future with a level head and happy hearts.
If you’re just starting your journey, it might be overwhelming and exhausting. Please know that it won’t always be that way. You’ll adapt. You’ll learn. You’ll pace yourself. And over time, your new normal will be such that you’d miss it if it were gone.
If you’re in that place of shock, and need someone to reach out to, give me a shout. We’ll talk through what it looks like today, and the hopes that tomorrow will bring.
#autism #parenting #autismawareness