First of all, has it really been 3 months since I’ve last posted? Well, at least I have an excuse. Nothing like moving (twice, no less) to make one forget about things like blogs.
We’ve been in our new house for almost 2 months and on our island for almost 3. 837.7 miles from our former home and most days we don’t miss it. Well, it’s not that we don’t miss it because we sure do miss our friends, our school, kung fu, our beach, the Golden Gate bridge…it’s more like we are so happy and content being where we know we are supposed to be. The transition has probably been as good as it could possibly be, and we are all loving our new lives here.
Z is especially doing great. I guess gaining 1,000 square feet of house and over an acre of yard and forest has been good for him. We were pretty crammed in our old place. Which just made the walls easier to bounce off. Now he has room to run, room to swing, room to ride his bike, room to climb, room to go outside and explore. We still have all the issues we had before. Sleeping is still hard. Understanding boundaries with everyone else around him is a struggle. There is still a lot of bouncing, crashing, and yelling. We are still exhausted and have to make a point of working with him consistently through the day to keep him regulated. Which still doesn’t always happen. But, we really are in a place that is good for him and he is happy and thriving. We’ve had a number of evaluations at the developmental preschool and we are hopeful he will qualify for services in the fall. We meet (finally) with an OT in the city tomorrow and are looking forward to getting back into the routine of superhero classes.
In other news, 2 weekends ago I got to attend a Sensory Processing Disorder seminar. I spent the whole sunny weekend sitting in a classroom learning about the brain, nervous system, serotonin, sensory diets, and school related issues. It was amazing. Understanding (just a little bit) what is going on in his body makes a world of difference. Knowing that there is something “broken” or “off” with his system and learning how it can be “fixed” or changed left me with so much more understanding and hope. Hearing about all the ways to help hm succeed in school took away a lot of the fears I have for him. And, learning practical ways to help him through the day gives us so many more resources to help the whole family to cope. I’ll leave you with just one example.
We had known about joint compressions before, but I was reminded of it and how good they are for him. Last week I needed to clip his fingernails (which had really turned into claws) and, as usual, he had a meltdown and starting crying and trying to escape as soon as he saw the nail clippers. I sat him on my lap and spent about 5 minutes doing joint compressions. As I was doing them, I could feel him relax and practically melt into my lap. I then clipped all 20 of his nails without a struggle or peep out of him. Mr. D* was amazed. I was amazed. That has never happened before. It sounds crazy that such a small thing like clipping a child’s nails without a fit would leave me with so much hope, but it did. It also left me with so much hope that he will learn to adjust to life and he won’t spend it living in fear of everyday things. That’s enough to make a mama happy.
Living with a child who has Sensory Processing Disorder can mean a number of challenges throughout the day. One of the biggest challenges is to find a way to calm him down when his nervous system goes into overdrive.
One of my favorite phrases our OT uses when talking to Z is “it looks like your engine is fast/slow/loud/quiet/busy.” Any one of those things can describe how his body is acting at any given time. And it can literally change from moment to moment.
The amazing thing to me is that Z actually understands what it means. That understanding has made a world of difference on a daily basis. We have gotten into the habit of frequently asking him what his engine feels like. Some of his favorite answers are “loud” and “quiet” though we get the occasional “grumpy” or ‘sleepy.” When he is feeling loud or fast or grumpy, he is starting to be able to stop and think about what he needs to do to feel quiet or slow. Which is amazing. I can’t even describe how much easier it makes day to day life to have him realize that he needs to stop and calm his engine. When he realizes this, he’ll stop and climb into my lap and take big breaths while I rub his back, lie on the floor in turtle pose, or find some sort of soothing activity (like Legos or his bean box).
His engine is still revved up enough times each day that leaves Mr. D* and I exhausted and his brother and sister frustrated after being jumped on/kicked/hit/etc., but at least we are making progress. It’s the small victories throughout the day that make it all worth it.
Me: “Z, you need to share that, please.”
Z: ::big sigh:: “Mom. You worry about you. I’ll worry about me.”
After dropping some Legos on the ground: “We are crying out loud for crying out loud!”
“I just want to shake my bootie!”
While walking past a Hooter’s on the way to the bathroom: “Hey! Where those ladies clothes go?”
While walking past the same Hooter’s on the way back from the bathroom: “Wow! Those are some big nanas!”
Ahhh…the holidays. We’ve been playing the Pandora Christmas station in the house and I keep hearing “It’s the Most Wonderful Time of the Year.” It’s supposed to be right? I usually love Advent. I usually love decorating the tree, baking cookies, looking at lights, seeing The Nutcracker with A, giving gifts, going to the Christmas Eve candlelight service. December is usually really great and filled with traditions and activities that we all love. But, I’m going to be honest: Christmas isn’t even here yet and I’m ready for it to be over.
For starters, the past 2 months have seemed non-stop. Halloween…Thanksgiving…now Christmas. I’m exhausted. School has been busy. The routine of homework, packing lunches, getting to school on time, picking up the kids on time, play dates and shuttling everyone to activities is wearing me down. My RA has been flaring since I’m tired and sometimes stressed. Oh…and we have a kid with SPD.
I guess that technically this isn’t the first Christmas we have had a child with SPD. It is, however, the first year that we have been aware of it and noticed what is going on in his little body. It’s also, and this is the bigger deal, the first year that HE has been aware that something is going on at Christmas. And it’s been hard.
We were prepared at Halloween. We avoided the Halloween parade and traded trick-or-treating for an activity that he loved (staying home in a quiet house and passing out candy). It was great. Not overwhelming for him at all.
Thanksgiving was good, too. We were worried since we were at my parents and there were cousins, aunts, uncles, and Thanksgiving day guests everywhere. But, he did great in the extra space and thrived with everyone giving him focused attention and some structure. He loved wrestling with uncles and playing with Grampy’s marble run with his cousins and hanging out in a tent when it all got to be too much for him. For all our worrying, it turned out to be a really fun, relaxing week.
And then December came. I have to be honest again: I wasn’t prepared. We thought that all the fun activities would be exciting for him and that he would get a kick out of the tree and gingerbread houses and cookies and Santa and the Advent candles and everything else we do. The other two kids love it so why shouldn’t he? What I didn’t stop and think about is that all that is akin to overload for an SPD kid. From the night we put the tree up he has been in high gear. And since we are busy and exhausted, it’s been hard for us to stop and focus on what he needs. His sensory diet has essentially gone out the window and been replaced with noise and lights and sugar. And right now I’m feeling pretty bad about it. I mean, when I really stop and think about it, it makes sense that his “engine” (as his OT calls his nervous system) has been revved nonstop. Of course all the activities, errands, and decorations are overwhelming for him. Of course he sees the excitement that his brother and sister have (and know how to regulate) and is confused by it. Of course he doesn’t know how to handle all this extra input any other way than bouncing, yelling, and running away from us as soon as he gets a chance.
On our way to OT today, after running some errands (one of which involved chasing him down as he bolted out of a bookstore toward the parking lot) I kept thinking how much he really needed his “super-hero” class today. And he did. I could tell – more than any other time we have gone – that it was exactly where he needed to be. He was so full of ideas of what he needed (which he knows better than we do). So HAPPY. He spun in circles in the boat swing for 5-minutes straight, laughing the whole time. He climbed and jumped and pulled and then finally settled down to cutting and gluing and turned out a paper candy cane he was so proud of. Even though my mind was spinning thinking about the cookies I had to finish baking for school, it was so great to really stop and watch him be at peace for maybe the first time in a couple weeks. And a shout out to Karen, our amazing OT, who took time to talk to me about what he is experiencing and how we can help him. She’s great. Really great.
So, Z, I’m sorry. I’m sorry that my ideas of what the holidays should be have taken priority over what you need. I’m sorry that I have let myself get so busy and tired that I haven’t had time to stop and be with you and help you calm your engine. I’m sorry that I didn’t think about how overwhelming Christmas would be for you. I promise that for the next 9 days we’ll take it easy. I promise we’ll work on your sensory diet, take naps when we need them, do heavy and tactile work, and not run around doing endless errands or activities. I promise that while A and J are home on break we won’t watch TV constantly, but we’ll ride bikes, take walks, and find fun games to play that keep your nervous system organized. I promise that Christmas morning will be slow and relaxed, that we will make present opening last a long time and take lots of time to eat and play and laugh. I promise that we are all going to do everything we can to make the holiday season a good one for everyone in the family. I promise that we will try to make the first Christmas you understand a really great one for you.
Z‘s amazing candy cane. I think it’s the first piece of art he hung on the fridge. And boy was he proud!
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