He also likes activity and motion. As you can see from exhibit A above any object that produces that desired outcome is his favorite. I had to beg him to stand still for this pic! For Marvin movement is something his body needs and craves. It helps him be calm and regulate himself. But a couple of weeks ago all that changed.
We were at church. My son attends Sunday School while we have service. I went to pick him up from class and his teacher brought him to me. She said that he got a little bump and cut and that he was fine. A friend had hurt him.
I figured there was some roughhousing going on but I would address it later. I took Marvin to the car. He had started to cry and cry. His head hurt. Badly. I noticed in addition to the gash there was a bump. Because Marvin has Shaken Baby Syndrome we take head injuries seriously. He was taken to our local emergency clinic. We were told it was a soft tissue injury.
Afterwards I was still noticing that Marvin wasn't himself. I contacted his OT and between the two of us and Marvin we found out the whole story. Marvin was picked up and thrown against a metal cabinet. The OT told me he had a concussion. We made an appointment with the Traumatic Brain Injury clinic at our local hospital. Meanwhile Marvin went on cognitive rest at the recommendation of the Drs and his OT.
While we waited on the appointment I panicked on a pretty regular basis. Yes, I know I'm supposed to have it all together, but I was scared. Very scared. My son forgot how to write his letters, cried for hours about the pain, and spent many many many hours on the phone trying to figure out if we were supposed to take him to the emergency room. (Every time the local hospital said no that these were typical concussion symptoms only bring him in if he is throwing up or passes out.).
The appointment came and after the good Dr tried to figure out how on earth you get a concussion in church of all places a plan was set in place. It basically involves taking everything that my son loves and can do and telling him no.
The first thing to go was TV and video games. That was during cognitive rest. We don't watch a ton of TV or play a ton of video games, but when you can't have them it makes them that much more attractive and desirable. Think about your last diet. Did you say, "Gee I really want carrots and kale!" or did you spend more time trying to figure out how to get at that candy bar in the pantry when no one was looking? So my son became more clever at trying to get at these things. I finally was able to grant him limited access and of course now he isn't as interested.
We also have to make sure that he gets more rest, he can't spin, run too much, ride a bike, scooter, skateboard, or unicycle, have too much light, noise, stimulation, and stay away from food after midnight. OK not the food part, but everything else. I mentioned to the Dr I would have more luck nailing Jello to a tree and teaching my cat to recite Latin. As I mention this Marvin jumps off the exam table backwards to prove my point. The Dr. didn't miss a beat and said he could loan me some Latin books to get started with my cat. Haha.
I will say it's been hard. I'd love to candy coat it and say Marvin has settled in, picked up stamp collection, and has been waiting patiently while daily reciting his prayers for healing. He's also taken up Gregorian chanting and knitting. He's decided that the true path to enlightenment is found in hours of quiet meditation.
No. Just no. What it has been is hard. Marvin doesn't want to be still. Ever. He's frustrated, upset, and antsy. When you take away things that a child needs to self regulate and don't find a proper substitution then you set yourself and your child up for failure.
We are still trying. Trying to find ways to help Marvin help himself. He has discovered that he loves books on CD and we have been listening to those. I put a shout out and have had all sorts of wonderful suggestions. I plan on trying each and every one. Thanks to a super creative OT he has some safe activities that help satisfy some of his cravings for movement and motion. We also found an art class where he can do fun things and not overtax himself.
Another thing we have found out is that our dog who enjoys licking shoes will not leave my son's side. She has risen to the occasion of service dog. She follows him from room to room. She knows when he is dizzy and immediately moves her body in a way that corrects him. If he sits down and puts his hands on his head she immediately comes and finds me and leads me to him. Have you ever been shepherded by a Great Dane? It's an experience. But I feel better knowing that Noel has his back too.
This is going to take time. I wish I could say he'll be great in a week or so. But it may take up to a year or longer for him to heal from this. I'm not a patient soul and neither is my son. There will be long term effects for this tragic accident. The biggest one for me is will he be safe and protected when he's not with us? I know stuff happens. He's a little kid. But to have more stuff happen on top of stuff he's already had happen just doesn't seem fair to me. I know I'll have to learn to trust that he will be OK out of our line of vision but that's going to take me some time.
For Marvin it's been hard. He's trying to adjust to a body that hurts more, has more limitations, and trying to relearn things all over again. I've been really proud of him. He hasn't always handled it gracefully and he certainly has been vocal about why he should be allowed to ride his scooter standing on his head while paying a video game, but he went back to Sunday School. He was terrified but he did it. That's courage. He sat down with print outs of letters and spent two days relearning how to write. That's persistence. He has put together lego kits that a few months ago he couldn't sit still to do. That's patience. He isn't angry at the other kid for what happened and still wants to be his friend. That's a good heart. And for now that's all I can really ask for.