About a year and a half ago, Jeremy and I heard the words, "Your daughter has autism". Now, by the time parents hear these words, they probably aren't surprised. We weren't. We knew something was wrong; now we had a name for it, and a direction to go in. I talk about Libby a lot. About how smart, sweet, beautiful and funny she is. I discuss her with teachers, therapists, doctors, on how to move forward. What do we do next? What is best for her in this situation? What I don't discuss much is how it affects the rest of the family. I think for the most part, we have handled it well. I know my older kids have worried at times. They love her so much and are fiercely protective. At times, Samuel will ask deep questions or express his worry. Thoughts too heavy for a 9 year old to deal with. However, if you know my Sam well, you know he is a deep little kid. It is his nature. To pretend it doesn't affect everyone in the house would be naive. We are of course, learning as we go, and trying to keep communication open. I don't want to try to think I know all their or my husband's thoughts, or share them all here, as they aren't mine to share. But I do want to share some of mine. Some of this may be slightly humorous; some of it is very hard to type.
I was a organizational late bloomer. I remember bringing home what we called back then, a book satchel, with papers wadded up, almost unrecognizable in the bottom of it. I vividly remember a friend spending the night with me in middle school, and her fun idea for the night was to clean my room. Here's your sign. As I got older, though, my survival instincts kicked in, and also I began to see how much more peaceful I felt when I had everything done, and everything organized. It is my temperament to "have all my ducks in a row". I prided myself on it. My house stayed clean (like...always. Seriously). I sent everyone in my family birthday cards. I sent out Christmas cards. Then I had children. You know the rest of the story. The more children I added to my household, the more other things I had to start letting go. I still like things a certain way. Ask my kids. So by the time I had three children, things were very different in my life. Obviously. Then came autism. The fact is, as precious as Liberty Rose is, she is also work. Now, I don't mind work. Work is good for us, and our kids are the most important work we'll ever do. But because of her symptoms of autism, she is more high maintenance than even a typical 5 year old girl. In some ways, her behavior is still that of a toddler. We have to think ahead, be proactive. Decide if we are going to take a chance on a meltdown in a restaurant. Spoiler alert: we rarely do. Thank God for drive throughs, and carry out. Plan our activities around who is going to be too tired, and who can stay home. And on it goes. Daily.
I don't have to tell you parents, that fear concerning our kids is real. And we all know the accuser will come as often as we tolerate it, to tell us we are failing. That we aren't doing a good job. That when it doesn't go well, it's our fault. I don't consider myself a fearful person in general. With a kid with special needs, he has amped up the accusations. "It's probably your fault she is this way." "You aren't doing everything you can to help her. In fact, you're failing the rest of them, too. Your other kids and your husband. Your friends and family. Your church." Most of the time, I am good at telling him to take a hike. But to be really gut level honest, there have moments when my daughter wasn't the one melting down.
It's natural to worry. What if she doesn't get better? Who will care for her when we're gone? How will I balance it all? And so on. I know some of you know what I'm talking about. But can I tell you, we serve a God who loves our kids so much more than we do. When the accusations come....when the worry comes...when the exhaustion comes....He is there. He is our shield. Our defense. Our strong tower. He is our Daddy who loves us, and carries us when we're too tired to walk. He is our healer. Something I stand on every. Single. Day.
I covet your prayers. Life giving prayers. Know that if I ever, even like once every 6 months...call, text, FB message, etc. you are important to me. (And if I don't, it doesn't mean you aren't.) I just simply don't have the emotional energy to be the friend I used to be. My heart still feels the same, but my body and my brain are filled with caring for my family. But His grace is sufficient. (Also, if you are extremely negative, I may be taking a step back. I have too much at stake, too much to believe for, to allow that kind of thing into my environment.)
In closing, I'd like to say I don't refer to myself an austim mom, or a special needs mom, or to Libby as an autistic child. (If you word it that way, I don't take offense.) I have a daughter who has autism. She has special needs. But autism is not our identity. It is not what Father God calls us. We are simply Amber and Liberty, with destinies and callings to fulfill.
Love and Peace,
Amber
