Autism, Motherhood

what I want you to know

I don’t often share the details of our daily lives. There are many reasons for it, the first is that I seriously doubt anyone wants to hear them. It’s too much, too hard, and too constant for people in our lives to hear about regularly. No one knows what to say, and I understand that. I find myself just trying to compartmentalize it, so sometimes I don’t want to share. The other big reason is that I want to respect Caleb’s privacy. This is something I’m more conscious of now that he’s getting older.

I realized how bad things have gotten when I was at Caleb’s Christmas performance last week. Our entire afternoon was filled with yelling and screaming. When we got in the car, he immediately began attacking Mason because he was coughing. We are wondering if we should turn around the entire 30 minute ride there. I’ve never enjoyed Caleb’s Christmas performances. It must be overwhelming for him. The crowds, noise, and expectation of performance are just too much for him. He will either stand there and do nothing, run to his teachers, or, like his performance last week, continuously touch and get in the personal space of the children standing next to him. I’m holding my breath waiting for him to pull his pants down, run off the stage, or scream.

The anxiety of watching him is overwhelming. I am filled with sadness and grief as I observe the other kids not struggling. I wonder what it must be like for the parents who are enjoying watching their children. Do they realize how lucky they are to deal with only the normal, regular, everyday struggles of being a parent? Suddenly I realize I need to smile because if Caleb looks out into the crowd and finds my face, he can’t know what’s going on inside me. I want him to know I love him. I want him to feel the safety of my love, but I can’t even force a smile. I feel nothing but fear and grief and anger. It disturbed me, and prompted me to do some work clearing out the garbage that’s collected this year. It wasn’t really about the performance. I once again face the fact that healthy self-care is not an option, and the numbing and distractions I’d been resorting to were only making things worse. Thank you, Lord for the ability to afford counseling.

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I think what I want anyone who cares about us to know is that we deal with more than I tell you. I’m sure our neighbors hear the screaming often. Caleb’s super-sonic screams, meltdowns, and rages can start suddenly for almost any reason you would’ve never thought of. This occurs daily, sometimes hourly. We are traumatized and exhausted. I talk to the principal of Caleb’s school more than I talk to my dad. I want you to know that if you don’t hear from me for a while, or if I seem different than my normal self, it probably doesn’t have anything to do with you. I hope you’ll extend grace to me. Or reach out and check in. Most of the time we are just surviving each day. I feel incredibly guilty burdening anyone with our problems, but it’s a daily load I have learn how to manage better.

2019 is the opportunity for a fresh new start. We have a plan, and that’s all we can do. Discard what’s not working and try again. We will begin extensive ABA therapy as soon as someone is available to come to our home after school in the new year. I will restart the work of taking better care myself: exercising, eating healthier, quiet time, finding a support group, and writing.

We will continue fighting for Caleb to really know he is loved, he can do hard things, he is kind, he is strong. We will keep doing this even though it seems like it doesn’t matter. We will keep doing this even though it feels hopeless much of the time. I will cling to moments of connection and closeness. I will remember holding him as a baby, feeding him, soothing him, nurturing him with my body. These memories will help me feel tender toward the loud, aggressive, mean version of Caleb who is crying out for something he can’t tell us. His behavior is communicating something, and we’ll hopefully figure out how to communicate more effectively.

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Caleb has taught me that I am stronger and braver, but also weaker and more insufficient than I ever could have imagined.

I need help. I need Jesus. I need professionals. I need teachers. I need community. I need family. I need kind strangers. I am actually not enough.

And that’s ok.

Caleb has taught me to appreciate the everyday moments of peace and togetherness. He’s taught me to have patience with Mason when he struggles. He’s taught me to appreciate Mason like I probably wouldn’t have known I needed to.

I just returned from Caleb’s Holiday party at school. I’m happy to report that I enjoyed watching him. I watched him play games with a huge smile on my face, and it was 100% real. For those precious minutes, he was just a kid having fun with his friends. What a gift these simple pleasures are.

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