Please be advised: Today is going to be a red-alert day. This means there is a severe risk
for autism to take over more of your child in ways that are going to frustrate you, anger you,
hurt you and threaten every comfort and expectation you desired for yourself and your child today.
This is the warning I wish I could have access to on days that are what I call “Red-Alert” days, or “Severe-Risk Autism Days”. How great would it be to wake up to such a warning so I could better prepare myself for what’s to come. Not that it still wouldn’t be disappointing, but at least I would know and be able to don the appropriate armor to fight the day’s coming battles. Something like what is shown in this picture would be great – except instead of “terrorist”, insert “Autism”.
This past Saturday was just such a day. Perhaps it was the delayed reaction meltdown after I had been gone the whole day on Friday to my brother’s house. Perhaps it was the events of the day as they unfolded that overwhelmed him. Maybe it was these things also compounded with the many changes the Christmas season brings to our house with decorations, the tree with all its many lights (minus the top part of the tree – see previous post for THAT story!), the excitement of Santa’s arrival and the mystery of what presents await him Christmas morning. Or maybe as much as we try to see past it, dismiss it, forgive it, or even ignore it, it’s days like these that forcefully remind me that autism is still a part of my son, and its role in our lives does not go unnoticed easily.
Our church put on a Christmas pageant (or musical, whatever you want to call it). Some of our youth kids told the Christmas story throughout a medley of the children’s choir songs, adult choir songs, the Poolesville Youth Symphony Orchestra and Poolesville High Glee Club numbers. Samuel was in the children’s choir, and also part of the small group of kids who mimed the nativity scene as a shepherd boy. I didn’t know he was a shephered, otherwise I could have done a better job preparing him to wear a costume instead of overcoming a meltdown in the dressing room 5 minutes before dress rehearsal started. I talked to him about practicing his songs he’s been doing on Sunday morning, but he didn’t realize what all that entailed. It was too overwhelming for him just walking in the door, so he shut down and started drawing in his new notepad, scripting Cars 2 as he drew. When I told him he had to go get ready, he started crying and tried to run away yelling at me he just wanted to draw. I caught him, calmed him down and we walked calmly to the lounge where kids were getting their costumes on. He was only perturbed about the costume because it had long sleeves which he is abhorrently against. I was able to talk him into “trying it on”, then rolled up his sleeves, pinned the excess fabric in the back and tied on his little rope belt. Once it fit correctly, he was fine. And, I might add, STINKIN’ ADORABLE!
He joined the rest of the kids waiting for their turn to sing. The first song was “Come On Ring Those Bells” and they all had little glittery bracelets with bells attached for the kids to hold or wear and jingle during the chorus. Once he was up on the risers, he started crying again, “I don’t want to do this!” I must admit I am terribly conflicted when I see how hard it is for him. Part of me wants him to push through and do it so he can see for himself he IS able (and for me too!), and the other part of me wants to rescue him and whisk him away to a quiet place where he can stim and feel safe. I sat on stage with him, singing along with the kids and moving his hands to shake the bells. He looked thoroughly confused and rather annoyed he had to do this. I gave him BIG praises when he was done, even though he didn’t really sing and wouldn’t voluntarily shake his jingle bells.
All I wanted to do was cry, but I sat up there with him forcing bright eyes and big smiles to coax him into singing as happily as all the other kids surrounding him. But I could see his eyes, and they were glazed over. Autism had made its way to the forefront and pushed Samuel to a hidden place in the back of his mind. After the song, I walked to the back of the gym to go get a hymnal I’d need, and in the dark with no one looking, I allowed just a few tears to ease down my cheeks.
When our adult choir was on stage, I could see Sam sitting on the front row, and he was trying to talk to me. I put up one finger for “wait”. He got up a couple times and ran into Daddy (the choir director) mimicking his play at home with Kyle. As he sat, he kept draping his arms on his brother seeking that safe sensory input from a trusted source. I was surprised that he so willingly went up on stage when it was time to be part of the nativity scene. He went up and bowed down to the fake baby Jesus in the wooden manger filled with hay alongside a few other shepherds and behind Joseph and Mary while a video played of all the kids reading the Luke 2 story a few lines at a time. That was a long time for him to be up there and not mess around. He crawled around a bit, and talked with his brother, but did well for the most part.
After the video and the nativity kids were exiting the stage, it was my turn to sing “Joy to the World” with Ben (who was a magi in the nativity scene). I took Ben’s hand to go to the center of the stage, but Samuel, being very attached to his brother, was very concerned and upset that Ben wasn’t following. I explained again that we were singing, and he said he wanted to sing too. Since it was only rehearsal, I figured we could try it. I got down on my knees and held the hymnal in one hand and the microphone in the other as Ben and Sam stood on either side of me. Kyle played on the keyboard and we began to sing. We got through the first verse and chorus fine, although Sam kept sticking his face in the mic to emphasize certain words.
We skipped to the 4th verse, “He rules the world with truth and grace…” Suddenly as I looked to each of my children, I realized that they were both smiling, they were both happy, and they were BOTH singing! The glaze was gone from Sam’s eyes, and the sparkle had returned. He had put his arm around my shoulders and leaned against me and sang with his face right next to mine. For those two verses, Samuel had returned. And I couldn’t hold back anymore. My voice broke, and I covered my face with my arm. I was smiling and trying to regain dignity with everyone watching and it worked by the end of the chorus. Sam kept interrupting my concentration though by petting my hair and putting his hands on my cheeks and smushing them together while we tried to sing. I didn’t care. It was the first joy-filled moment of the day and I wanted it to last forever.
The next day, all had returned to normal – the blue level of the “Autism Advisory System” where there is only a general risk. There were occasional moments of yellow levels (elevated risk), but we stayed below the orange and red levels (high and severe risk) for the whole day. The performance went off without any “autism hitches”, and our song together went splendidly well. He had his arm around me, but he wasn’t as silly as the day before and I didn’t cry either. It was precious. My girlfriend was able to video our song, which I don’t yet have to post. It’s definitely one Christmas memory I will treasure always.