In Feburary, 2011, our nephew made his First Communion. We dressed the boys in their “church” clothes. I put Tate in a sweater and khaki pants. He kept whining that they were too “squicky”, which was his word for uncomfortable and unpleasant. I told him he had to wear them. We rushed into the car, and headed to the church. In hindsight, we did not prepare the boys well for this at all. We didn’t talk about it. We didn’t explain that the church was not our church. We didn’t talk about going to dinner afterwards. Not good.
We did not have an autism diagnosis yet, but Hubz and I both knew…and the family knew, that Tate struggled. Oh, did he struggle. Tate started to use quite a bit of echolalia as we headed into the church. “Mix, pix, squix. Mix, pix, squix,” he chanted over and over again. I tried my best to stay calm and soothe him with my voice. Hubz and I sandwiched Tate, figuring that we’d keep him from fleeing the situation, as well as from disturbing other people. He started to flap a bit before the service started. I could feel the stares burning into the back of my head. I tried to ignore them, but I felt every one.
We barely made it through the beginning of the service when Tate started to howl. Literally, howl. We had to remove him. I handed my mother-in-law Cole (who was barely 20 months old) and tried to quickly get Tate out of the room. He laid down in the middle of the aisle–completely dead-weight. Still howling. Hubz helped me get him vertical and we got him outside. I encouraged Hubz to go back in while I handled Tate.
Two years ago we had a child who was completely dysregulated and unable to communicate effectively. I knew it was too much. From the people, to the sounds, to the action going on around him. He was flailing about. He wanted to be held. My 50-pound-almost-five-year-old wanted me to hold him like he was a toddler. I tried. We also tried walking, rocking, deep pressure hugs, and hand squeezes. I was damp with sweat. The tendrils of hair that escaped my attempt at pulling my hair back had plastered themselves to my cheeks. I was flushed. My eyes were brimming with tears.
Nothing I tried worked to calm Tate, as he was too far into a state of dysregulation. We never made it back into the church to worship…we just sat outside the doors in the main area. Or well, we ran, jumped, vocally stimmed, and tried to ignore the stares. Oh, the stares. I wanted to crawl into my cowl neck sweater and never emerge.
After the service was over, all of the families congregated in the meeting space for a potluck dinner. We tried. We found food that we thought the boys would eat. And because he was so worked up, Tate overstuffed his mouth with chicken nuggets, didn’t chew properly, gagged and threw up all over Hubz. (That was pretty common back in those days…) Our family helped with the other two boys, but Tate was done. D-O-N-E, done. He was whining, tears were streaming, and he was hitting and sitting in wet clothes. It was pretty much our low point. Hubz made a comment about being glad that we had a doctor appointment coming up. I sighed and let the tears drip down my cheeks as we sat in the area outside the meeting space while Tate roamed and crashed into walls to try to regulate.
This past weekend, our niece made her First Communion at the same church. We talked to the boys about it for a few days beforehand, mentioning each day what we were going to be doing on Saturday night. We talked about how they had been there before, and how it was their cousins’ church, not our church that we usually attend. We talked about First Communion. We talked about all of the people who would be there. We discussed the “big dinner” afterwards, and how it would be “pot-luck”, which means lots of choices, but that we’d help them pick food that they liked.
We dressed the boys in their “church” clothes. We let Tate roll the sleeves of his button down shirt, and wear his favorite socks–even if they didn’t quite match. We let him bring his stimmy stick and stocked my purse with fruit snacks. We left with plenty of time, and took our time getting into the van. As we pulled up to the church, Jake remarked that he remembered being there before. My boys definitely have good memories. We decided to go into the church.
Tate sat at the edge of the pew. We have discovered that he has much less anxiety when he can “get out” and not feel trapped. He asked for a fruit snack. I obliged. He started making comments about the inside of the church. His volume was a little high, but not too bad. The music started, and so did the service. Tate was absorbing the stimuli around him. He was quiet, but a little fidgety. He asked for another fruit snack. A toddler started to shriek. Tate started to vocally stim. He then looked at me and asked to leave. We walked out quietly–together. I noticed an adult giving us “the stare” (you know what I mean). I met his gaze and arched my eyebrows, he quickly darted his eyes away.
We walked through the hallway of the church, down to a worship area where there must be music on Sundays during regular service times. He found fans on the ceilings. He was content to look at the fans in the shadows and count them. He was content to walk and count his steps. He was content to squeeze my hand and walk back and forth, back and forth. I asked if he wanted to go back into the church. He did not. We continued our walk to the music room to look at fans, and then back to the church to see what was going on during the service. Tate was quiet…well, quiet for Tate. He was not disturbing anyone. He was regulated.
Eventually Cole needed a break from the service, too. Hubz came out with him, and took a shift with the boys. They were a little more squirrely with Hubz, but they weren’t disturbing the service, so that is good. Tate came back into the main part of the church for the Communion. He walked up to the altar with the family, eager to see what it was all about. He started to get anxious, though, as our niece and our family were one of the last to receive Communion. Tate started to make his vocal stims again. He wanted to climb up my body. He started to whine. He asked to leave. So, he and I left. We didn’t receive Communion, but did leave peacefully.
Again, he and I made our way to the music room with fans. He counted them. We counted them. We skipped. We counted some more. We did some word games–which he asked me to stop when he was done. We made our way back to the church area. The shrieking toddler was outside of the main church now, still shrieking. Tate asked to walk away. So we did.
While we waited for everyone to gather before going into the church gathering area for the dinner, Tate played with my phone. He took pictures of Jake, Cole, and his cousins. He took pictures of the shrieking toddler throwing a tantrum on the floor. I’m totally serious. He walked with the family into the gathering space. He continued to play on the phone, alternating between Doc McStuffins videos and fan videos. He eagerly showed Grandma all of his favorites. She played along, remarking about how marvelous they all were. Tate was too dysregulated to eat, but he told us that. “My tummy is too squickily.” He did ask for some “melonade” (which is lemonade), and we made sure he had some. He sat, quietly, interacting when he was talked to, but then returning to his videos.
Even as we are struggling through a medication change, and all of the behaviors and anxieties that come with it, Tate is showing how far he has come in just 24 months. It is nothing short of amazing. That little boy who used to be so trapped and alone has cracked that shell and is starting to come out. He can communicate more effectively when given the chance. He is able to advocate for himself, not always, but in little, yet big, ways. And we’re seeing how much he’s grown.
Looking back, even when things seemed so hopeless, we latched onto that last shred of hope that there was better coming around the bend…and it did come. Not immediately, but eventually. I know that this will happen again…it will…and that’s what gets me through…