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Writer, Retreat Leader, Resource Creator
I lost it twice. Broken down crying, wondering what has happened to me and my life and how in the world I can be both a mom and a minister.
I’ve got two weeks until the start of school, and then things will change, but it’s been harder than I thought this summer.
After a morning in which my son would not sit still, running and yelling in the house and outside of the house, I paused to make myself some lunch (because when I made his lunch he would not sit down), only to find him two minutes later running around, naked from the waist down, and covered head to toe in dirt. Sandwich half-made, I get him into the bath, and I break down crying. I’m supposed to be prepping for a church board meeting, doing the bulletin insert, and writing my blog let alone my sermon, and I’m scrubbing dirt out of my child’s skin. For what will probably not be the first time. Earlier that day, it took a while to calm him down because he had a runny nose. A runny nose will cause him to scream, and even at times bang his head, but dirt—he loves it.
The second time I cry is when we get the long-awaited phone call to schedule AJ’s dual surgical procedure. He is going to be put under to treat a cavity and do other dental care (it takes both my husband and I, holding him down, to brush his teeth) and the audiology department at Children’s is going to do a test they can only do when he is under anesthesia. They have wanted to do the audiology appointment for a while, but I did not want to subject my son to anesthesia for one test, when we are fairly certain his hearing is all right, he just won’t participate in a standard hearing test. So we are going to have both procedures at the same time. However, the earliest they can schedule him is near the end of November. The dental appointment that discovered the cavity was at the beginning of July. I couldn’t believe that they would put him off that long, but that was the earliest available appointment. I cry. I can’t believe they can’t schedule anything sooner, that a child with autism and a cavity cannot get in earlier than that. But I have to live with it.
And after I have calmed down from that call and I have just finished making notes for my board meeting that evening, my son starts crying big time. Can’t stop. It’s not his nose this time from what I can tell. I bring him his communication board, and he points to eat. Good, he wants to eat, even though he had a snack a half-hour ago. I give him choices, and he points to fruit, so I give him some grapes. He starts crying more and pushing the bowl of grapes away. I give him back the board, he points to crackers. I get him some crackers (which was his snack a half-hour before), and he starts screaming, pounding his hands on the table, then pushing at me and the communication board. I put it down and grab a cereal bar, which we call “cookies” in our house, and offer him a cookie. He pushes it away. I go to put it back and he really starts screaming—a full out meltdown. I bring back the cookie on a hunch and open it, and he immediately eats it and stops crying and screaming.
I lose it. I cry and cry. I hate that I cannot understand my son. I am so frustrated that a child who has known his alphabet since he was twenty months old, knows numbers and shapes and even tries to read, cannot understand communication and cannot tell me what he needs. I am so frustrated that at age five I am still changing his diapers and wiping bottoms and telling him to keep his hands out of his pants all the time because I’m afraid it will come back up with poop and it will be everywhere (this has happened, more than once). I am so completely discombobulated that I am working a part-time ministry position with no reliable childcare and am the primary parent home with him during the week.
It means I cannot often go visit my church members on a regular basis.
It means I cannot sit in the office for more than an hour at a time to work.
It means I am often working with a DVD soundtrack on in the background or trying to keep an eye on him outside (in the beginning of the summer, working outside went well—I worked on the deck and could keep an eye on him—but now he just comes and gets me every few minutes to eat something or to go with him inside).
It means people come by the church office and always seem surprised to see me at home instead of the office and the assumption has been made that I am not working.
In a nutshell, I feel stressed out. All the time. I feel like I never give my best to the church and that I’ve failed as a mom to give my attention to him.
I know I’m not alone. Adding autism onto this just makes it a little more of a challenge, but there are plenty of working moms who struggle as well.
And then I realize it’s just one day. Just one bad day out of so many good days.
What will I remember most from today? Probably AJ running and laughing half naked and happy, not that I was frustrated and cried, not that he got frustrated and cried. Not that I got organized for another church board meeting. Not that I wrote my blog entry or read any new theology or worked on other projects or cleaned the kitchen. I will remember that AJ had, overall, a very happy day, and that he used the word “Eat.”
Because what I didn’t remember in all that frustration and crying was that he didn’t only point to the word, he actually said it. “Eat.” He vocalized his need. And that was the most important thing that happened today.
Release Date: October 8th, 2019