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)

12 comments:
I cried a little when I read this. You so eloquently describe the heartache yet so sweetly describe your beautiful son as well. I'm sorry that special events like that are so hard on him and on you! Love, Love, LOVE that picture of the stable that he drew. In all the uncertainty Jesus showed up, through a drawing.
Merry Christmas to you and your family Sybil!
Thank you, Heidi. This was not an easy post to write, but not all of them are. Merry Christmas to you, too!
Being a mama can be so difficult at times. We love our children so much and, at times, feel so guilty for feeling worn out and frustrated. I applaud you for finding the good in the day and for recognizing that you need time to recharge.
The picture your son drew is precious. He has all he needs...Jesus.
So often, we can feel so misunderstood and frustrated when our children don't behave like other children. i have experienced this with two of my children. It can be painful and depressing. However, God made our children just as He wants them. Your son blesses more people than you may ever know.
Keep trusting in Jesus and being a good mama. My love to you my blogging friend. xoxo
Thanks so much for your encouragement. I have truly been blessed by you. What an amazing blogging world this is.
This post made me cry! Even though we've never met and I have only found your blog a month or so ago I feel such a connection having a son who also has sensory struggles. Reading about his day and the things he had to overcome reminded me of our sweet boy. I cried because of his beautiful drawing of Jesus in the humble manger and the beautiful scripture verse right along side it. Our sweet boys have to overcome so much, we as mothers want to protect them. But God our Father is the ultimate protector, healer, and is all knowing. Your blog is already touching so many lives through your son and through your words. It has touched my life. We don't know how far our touch spreads, only God does. But I hope you know you have touched our lives! Thank you for opening up and sharing your story and your son's story.
Wow. Thank you. My goal has been to raise awareness and let others know they are not alone. I am grateful to know that my words, my story has touched you.
His drawing is so beautiful! I just love it! I could relate to a lot of what you wrote. You are doing such a great job. xo
Thank you. His drawing was such a surprise, yet was so meaningful. Hugs to you during this season.
There's the evidence of what a great job you and Matt are doing with your little guy! What an awesome man he will be someday!
Thank you for your openness in this blog. As the mother of two special care children I recognize the seriousness of your worries. That is why I send a digital hug from Holland to you ;-) I think you're the one, your son need. You are so important to him! You're the one who encourages him to go out of his comfort zone. Sometimes this is a step forward, sometimers two steps back. Continue in God's power, He helps the weak! But be careful. Special days are tough for these children. Often I give them a day off ( free) , after an intense day. Can you do that also in your country?
Great drawing! Suprising for you :-)
I'm so honored to be a secret participator in this post! I too was really proud of him Sunday. His leadership on stage (and in class) was exemplary, especially considering all the courage it took! That was a brave thing to do and he did it calmly and accurately (he nailed those motions! and words!). As I was reading this post Evy came and looked over my shoulder and asked, "What are you reading?" I said, "A story that O's mommy wrote." (I pointed to your picture b/c she knows you well) As I scrolled down while reading she said excitedly, "O drew a picture of Mary and Joseph and Baby Jesus in the manger!" I love how kids just get each other!
Forgot to say, we think you and Matt are really wonderful parents and we think of you often when we talk about loving parents w/ 3 kids (even same genders in the same orders as what we'll have) raising well behaved, God-loving kids.
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