I haven’t been writing much about my son’s SPD lately. I wish it was because the signs have diminished and things were improving. Unfortunately, that’s not the case. In fact, because of the holidays – parties, programs, altered routines – the SPD has been ugly.
As I was processing what to write today, I thought of many things. I thought of my troubles in relation to the troubles of others. At least I still have my children, my son, despite the circumstances. I thought of the people, my friends and family, who have been offering words of encouragement and praise. Those who sit with us during mealtimes, watching meltdowns or who we call on for emergency childcare when we just can’t handle it anymore.
I’m sure I’ve said this before, but I’m going to say it again, because I have been feeling the weight of it lately. The holidays, with SPD, are hard. So hard that I have found myself wishing that we could escape them. That we could boycott all the events, parties, programs, etc. But, we can’t. Although we have made decisions to avoid certain places or have decided not to participate in certain activities, there are some things, for the sake of the rest of us, that we cannot and will not avoid.
Let’s talk about yesterday, Sunday. O protested going to church, what he would wear, what he would do there. He has had fabulous teachers this month, ones who love him and understand, as much as they can, what he goes through to be there. But, he had the Christmas program hanging over his head. The stage, the lights, the darkness, the sounds. All of it.
We got through the morning. His teachers praised how well he did, during class and at rehearsal. He was a leader among the group, which he likes, because it gives him a sense of control. He will be fine, I thought. He will be fine, everyone assured me.
My attempt to get him to nap in the afternoon failed. Since, the side effects of SPD are magnified when he is tired, it was worth a try. While he “rested” with me for an hour, he did not sleep.
In the afternoon, things were going normally, at least our version of normal, until bath time. This has been a big struggle recently. I have racked my brain to determine why he has started resisting so vehemently. I have no answers. So, we just face the difficulty, each night.
Everything about Sunday’s bath time was different. Different time of day, different circumstances in the bathroom – mommy and sisters getting ready for church – not to mention, that we just didn’t have as much time as usual. It was not relaxing, but that could not be avoided.
After bath, on a typical night, O will get into his pajamas, watch some TV and eat his evening snack, before going to bed. Sunday night, the night of the program, this could not be the routine. Consequently, O was struggling.
He didn’t want to go to the program, didn’t want to sing.
As I watched him sit, in his squish box, in his underwear, eating his typical evening snack (this night before he even had dinner), I resigned myself to the fact that he probably wouldn’t perform. That was okay. But he had to go with us. His sisters and cousins were performing, and all our babysitters were going to be there. There were no other options.
We managed to get him in his Christmas outfit, despite protest that the buttons on the shirt would tickle him and that wearing an undershirt would tickle him more, all the while ignoring his pleas to stay home. Into the car. Drive to church. Just get the girls there on time.
O was much calmer by the time we got to church, but I was still concerned. I know that certain types of exercise help calm and regulate him, so we took trips up and down the stairs, several times. He walked, crawled and bear-walked them. I dropped him off in his class after 10-minutes of stair walking, advising his teacher that more exercise, while they waited to go on stage, might be a good idea.
He did it. He sang on the stage. He did the motions. When he came down, he flew into my arms and squeezed me so tight, then asked for a phone to play on and said he was thirsty.
Everyone was impressed with how well he did. I was too. But, one thing I’ve experienced lately with O’s SPD is that, while we are often able to prepare him to get through the hard things, the aftermath is brutal. He doesn’t know what to do with himself after he’s gotten through the hard things. We don’t know what to do with him either.
After the program we needed dinner. O didn’t, which was the first problem. The other problems…it was almost bedtime, he hadn’t napped, we were going to a new restaurant, he had to go to the bathroom (and won’t use public restrooms), he wanted to drive through a specific neighborhood to see Christmas lights, etc. Each one a recipe for disaster by itself, but together. Oh wow.
When we finally got home, after 9pm, and got the kids in bed, I was exhausted. I still couldn’t believe that he had gone onto the stage and sang. But, at what cost. I questioned my motives. I thought of his upcoming preschool program. So many changes. So many things that should be fun, but bring him a exorbitant amount of stress.
I am so grateful for my son. For this little boy with a huge heart. For the joy that he brings our family, daily. This morning he woke up and said, “I did good in the program last night, mama.” I said, “Yes, you did.” We didn’t discuss the before or the after.
My heart breaks for my son. For his stress. His anxiety. His interpretation of life. Although I know he is smart, because of how he analyzes the world I often wonder how much of the emotional part of life he gets.
Sometimes O draws to de-stress. In an effort to keep him occupied and quiet during E’s choir performance on Saturday night, we gave him a pencil and paper. Here’s what he drew…
My son, who usually draws trains or animals, drew the stable. The place where Jesus’ life began. It always comes back to Jesus. He gets THAT.
“I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” – John 16:33 (NLT)