“He has autism,” I say. These words are so limp and useless. They are inadequate and meaningless. The yawning gap between those 3 words and our reality is so hard to describe. I want to be understood, but the truth is, I barely understand it myself. My guess is that you have something like that, too. Something that can’t be easily explained or understood. Does it make you feel lonely, too? I think what I’m really trying to say is, “life is really hard, like really, really hard, sometimes.” When you seem concerned, I quickly tell you it’s mild (what is that?) and you seem relieved and say, “good.”
Today, like many days, I have this gaping feeling of emptiness clawing at my insides. I desperately wonder if a dog can fill it, but I don’t know. It makes me feel so alone. How do I even describe what this is like? How do I process this? I’ll try.
Last night, my beautiful son chanted, “I hate you Mommy, I hate you Mommy, I hate you Mommy, I hate you Mommy…” It happened so fast. We were ok, and then we weren’t. I think that’s what makes autism so hard for us. We are ok…and then it’s like a bomb explodes out of nowhere. It happens a lot. This particular incident came from telling him he would need to put away the small toys meticulously lined up on his desk before our cleaning lady came. When I clean it for him, he has a meltdown after her monthly cleaning. I hoped by giving him 2 days’ notice and letting him put them away himself, we might be able to prevent another meltdown. I was wrong. I say nothing because it never matters and walk away from him. He follows me, spewing vitriol the whole time. He always follows. I’m always trapped. I think, “that was nothing, at least he didn’t try to physically hurt me this time.”
This morning, he said he wanted me to come to the book fair with him. I reminded him that we already discussed my joining him for “Muffins with Mom” tomorrow morning. We won’t have time this morning. Plus, I don’t think I’m allowed to until tomorrow. He won’t let it go. He is totally fixated on it. I HAVE to come this morning. Reasoning doesn’t do any good. Reminding him about his behavior chart doesn’t do any good. He says he doesn’t care about losing points (points earn rewards, similar to the one he has at school), he will get all 0s today unless I agree to go with him this morning. We remind him that he’s only hurting himself and threatening us never works. He won’t go to school; he won’t get in the car. I physically put him in the car and he collapses on the floor. He’s screaming his eardrum-piercing-scream because I accidently knocked his head on the cup holder putting him in the car.
Mason silently sits in his seat, watching. He witnesses all of it always. I feel a sharp pang of worry about what all this is doing to him. Caleb finally gets in his seat, but he won’t buckle. When he does, he’s still yelling. Threatening. 30 miserable minutes later, we are at his school. He won’t get out of the van at first. I tell him I love him very much and I hope he can turn it around and have a good day. Yet, in that moment, I feel nothing for my child except numbness and internalized rage. He doesn’t say goodbye and leaves. I’m simultaneously glad to see the back of him, and guilty sad for feeling that way. I put on a movie for Mason just so he can try to forget what just happened as we drive 40 minutes’ home.
He came home from school today happy, he had a good day. I’m really glad he did.
My day was different though. Exhausted, gnawing emptiness settled in my body all day and I couldn’t shake it. What happened last night and this morning were actually mild. But it’s the accumulation of it all, I suppose. It happens all the time. I feel like I’m in an abusive relationship. I can’t believe I’m even saying that, but that’s what it feels like sometimes. I’m reaching the point where I’ve lost my ability to think of any new ideas or plans for preventing this. Friends, I’m in a dark place right now. I know it will pass soon enough, but it’ll be back again, and I’m never ready for it.
You never know where you’ll catch me, but I’ll probably try to hide it or minimize it if you ask how I am. I may just say, “we are having a hard time with Caleb right now.” You’ll kindly say, “I’m sorry,” having no idea what that really means to us. You’re a good friend, thank you for your love. I wish I didn’t have such a need for it. I wish I could fill up and stay full, but this is my life. I have to accept that I’ll constantly need filling. I hate feeling so needy and empty all the time. I try not to show it because it’s embarrassing. I try to focus on being there for others.
But the truth is, some days it’s just bad. I’m consumed with the worry for Caleb, the fear that all my efforts are not making a difference, that he will continue these episodes when he’s too big to restrain, plus the feeling of being completely ineffective and helpless… it just overwhelms me.
I’ve always hesitated to share this part of our journey with Caleb. For so many reasons. I don’t want anyone to think that this is who he is. I know it isn’t. He is a caring, loving, bright, intelligent, engaging, well-loved 6-year-old. I don’t know exactly what these episodes are like for him, but I know it’s very hard for him, too. I do know he feels out of control. It’s like he goes in a trance. He seems to bounce back quickly once he’s done, at least. I’ve also hesitated to share because I never wanted this to be about me. It’s not about me. And finally, I’ve never shared because I know that our journey with autism is a drop in the bucket compared to many others, and it feels selfish to complain when I know we are so lucky. I have 2 healthy children and we make plenty of wonderful memories together, but there’s also this.
And yet here I am, sharing and praying that maybe it helps me and someone else feel less alone.