Monday went well. I picked him up at 10:00 because we had therapy from 10:45-3 in Corinth and he’d done well and had a good day. Tuesday he was scheduled until 12:00 and was supposed to eat lunch in the cafeteria. That was a huge deal to us because he has not eaten lunch in the cafeteria since his kindergarten year, and it was a huge trigger for him then. Sometimes he would scream in the cafeteria, or act out, but a lot of the time he would hold it together until they got back to the room and then lash out at anyone and anything. He threw a chair across the room one day after lunch. It was major. So that was when things were so bad we did homebound for awhile and his teacher came to our house three days a week and the other two days I took him to the school and stayed with him while she worked with him one on one. We did that so he would still remember the school and be in a routine of going so that we could slowly build back up.
Those were really hard times but the school really stuck with us and his teacher was amazing. He had his own little room at the school that we worked with him in and I remember one day he got really upset with little warning and suddenly turned and clawed my cheek so hard blood started running down my face. I was generally pretty good at being stoic but that day I burst into tears and ran and locked myself in the staff bathroom, leaving his teacher to deal with my screaming child. She handled it like a boss and still loves me so it’s all good. But until you’ve locked yourself in a bathroom at your kid’s school sobbing and bleeding you don’t know the struggle. (His teacher also knew this struggle. She got more than her share of scratches and bruises and somedays I would pick him up and wads of her hair would be in the trashcan from him pulling it out. It was a dark time.)
I said all that to say, we’ve come a looooooong way since then, thankfully. We still have our struggles of course, and some days are harder than others but progress is a beautiful thing. When I went to pick Korban up Tuesday, the principal waved me into her office and was so genuinely excited because she had seen him in the cafeteria holding his tray and acting all calm and grown up. I could’ve cried. (But in a good way, not a lock myself in their bathroom kind of way.)
I got him from the aide and she said he did great. He ate his chicken quesadilla and asked her for another one. Ha! I had written a note explaining that it could go one of two ways—either he wouldn’t eat anything or he would eat it all and ask for more. I told them if the latter was the case to just tell him mom had more food at home. She told him just that and he was fine. He also ate his chips and salsa from his tray at school and drank his milk. And he ate again when he got home because he’s a hobbit. Brad said “We need to explain to him that the school cafeteria is NOT a buffet.” We’ve laughed so hard about how things have changed and how once he remembered they had food up in the school they may not be able to get him to do anything else.
He did well at lunch on Wednesday too, although he didn’t eat very much. That’s definitely ok because it’s not like he’s malnourished or anything. He did get cranky with me when we were trying to leave because he wanted this pencil he had left in his room. He loves to sharpen pencils down to nubs and then hold onto them. I was trying to tell him to leave that in his classroom because he had one at home he’d brought from school the day before. He got pretty loud in the hallway but he finally settled down and left with me. On the way out he said “CAN I CUSS?” Dude, no. 🤦♀️😂 I told one of my friends about that and she laughed and said that might be her new motto. (For anyone who’s wondering, he knows exactly two cuss words that he periodically belts out and embarrasses the mess out of me, so at least he asked that time.)
Today they contacted me to say he was really overstimulated and they weren’t sure he would do as well in the cafeteria so I made the decision to go on and get him. I want to set him up to succeed and not put too much on him. If he was already struggling, no sense in ruining a good thing. I told Brad the other day that I feel like we are constantly walking a tightrope between not holding him back and underestimating him and pushing him too hard. But I feel like between the two of us we balance each other out fairly well and get fairly close to a happy medium. I hope so anyway.
So I picked him up and he really was overstimulated. He was trying to wiggle out of his seatbelt and lay down in the backseat and just being wild. He kept aggravating Selah and being loud. I finally got him settled down and got both kids lunch and then finished up Selah’s schoolwork for the day. She had an appointment with her ENT at 2:00, and Korban was going to stay with his Mamaw while I took Sis to the dr. I had fixed myself a cheese quesadilla for lunch but let it sit on the stove and get cold while I finished lessons with Selah. I figured I better scarf it down before we left so I asked Selah to walk her dog Roxie in the back yard while I ate.
I took my food out on the porch so I could hear them. Korban asked if he could walk with Selah and she said yes and I did too. He had calmed down considerably. They walked behind the house and I sat on the porch and munched my quesadilla. In a few minutes Selah rounded the corner and said “Mom, I think you need to come look at Korban.”
I should mention that last week we had to have our septic tank replaced. So there was a lot of dirt in our backyard. It’s been pretty dry but we had a big rain this morning while Korban was at school. I wasn’t thinking about any of that when I turned the kids loose in the backyard. I was just thinking about lunch and getting on the road. I rounded the corner and saw this.
Can someone make me a shirt with “CAN I CUSS?” printed on it? 😂😂😂
I made him strip down on the porch and then I gave him a good scrubbing in the tub. Even with that I still managed to drop him off (clean!) with his Mamaw and make it to Selah’s apt five minutes early, which is a miracle. I guess we got bath time out of the way early today.
Today was a bit of a setback, but I’ve made it through much, much worse. The aggression and self harm was honestly the hardest thing we’ve ever dealt with and I’m so thankful that has been loads better the past year. His aide saw I was concerned today when I picked him up and said “Oh don’t worry, it wasn’t like it used to be.” Whew! I felt like I could breathe again.
What some people don’t understand is sometimes you can work and work and work and still only make limited progress. It’s both exhausting and terrifying, to give your best and it not be good enough. He was diagnosed with autism at age 3 but he started therapies like OT and speech when he was two. He started getting ABA (behavioral therapy) when he was six through the school. Before that I drove him back and forth to Tupelo to the Autism Center for ABA several time a week for close to two years. We do prescription medicine and alternative treatments like supplements. We have a service dog. We work hard.
Just an example—Korban has this horrible, ear splitting scream he does when he’s upset. I’ve never heard anything like it. If you heard it out in public you would immediately notice and be alarmed. And he’s done it in public plenty of times. Six years we’ve worked on this behavior with his therapist. Six years of saying that if he had to scream he could scream in his room but no where else. Six years of trying to give him other ways to cope. And after six years, this summer he got upset while we were out and looked at me and said “Can I scream in my room when I get home?” I said sure and he went on and managed to stay composed. He’s done that several times since. Sometimes he is fine by the time he gets home and sometimes he does go to his room and scream. But either way, I applaud his self control. I don’t mean he’s only been doing this particular scream for the past six years. He’s done it since he was about 18 months. I just mean we had tried other things that the dr who diagnosed him recommended, such as ignoring it and waiting for him to stop the behavior. Never did any good and if you heard him do it you’d swear he was dying and not just angry that his favorite flashlight needed a new battery or something. I mean we’ve been dealing with that behavior for over a decade, but we finally got behavioral therapy six years ago when he started school and have been working with a behaviorist to help him find better coping skills since then.
Setbacks are hard sometimes, but he’s doing well overall and I am so so thankful. Some days are gonna look like this:
While other days look like this:
But either way, it looks better than where we’ve been.
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