Working the system

Nov. 6, 2011

Anyone who has spent time with Nathan knows he’s a very easy-going guy with a very happy demeanor. Many people have never seen him unhappy or upset. When it happens it’s normally an indicator that there is something pretty wrong.

Over the summer, when we were doing conductive education (the weeks following intensive physical therapy down in Cincinnati) some of the last sessions, Nathan had gotten fussy, but Annette and I thought it may have been imitating some of the other kids in his class that didn’t want to do their work. The conductors are taught to keep working with the kids, not letting them think that if they cry they out of doing their work. Still, it seemed a little out of character for Nathan, not always working to get better.

This marked the first week of conductive education on top of mornings at school. One big difference is that he’s getting one-on-one attention in a new room in a building, but still with the same conductor. The first two days went well. The conductor was impressed, especially with the new strength built over the last 8 weeks, his desire to move around, and overall hard work.

On Wednesday, something seemed to be amiss. The other student was out, allowing both conductors to work solely with Nathan. About 15 minutes in, one of the ladies came out and asked me about his mood earlier in the day as Nathan was seemingly uncomfortable, and getting fussy. His sleep schedule and eating schedule was different but expectations were still high. Thursday, the fussiness turned to sobbing and crying that I could hear three rooms away. Friday, Annette took Nathan but still said he was not a happy guy. I won’t say I was surprised, or wanted to give him a reason to get out of working, but still to hear there were that many tears on his birthday really broke my heart.

We had tried giving him ibuprofen before heading out, and checked for other unhealthy symptoms, but once he got home in the evenings, it seemed as though everything was better. It seemed as though the work was the problem. It wasn’t that he couldn’t do it, but it was hard, and he didn’t have the confidence he once had. Neither the conductor, Annette or myself wanted to let him get off without trying, but we’re definitely hoping for better results this week.

Yes, Friday was Nathan’s 6th birthday. Annette took the day off and baked cupcakes that Nathan would take for snack for his class. Annette got to see some of his new classmates and some conversation time with Teacher Beth. The better conversation was with Teacher Beth after school. She had come up to us and made the comment, “I don’t know if it’s the conductive ed. or not, but he’s doing really well as of late.”

At school, Nathan is spending the day in his walker (with the seat in) or in a supportive chair, or working on the floor with the OT or PT, sitting/reaching/etc. Apparently Nathan is seeing this as easy compared to the other work and is putting extra effort there hoping it means the second half of the day he’ll get a pass. According to Beth, he’s using his communication device well, participating in activities and interacting well with everyone in the class. We can’t complain about that, but feel bad for the ladies in the afternoon, who aren’t seeing any of the good he’s doing.

We’ve never read to Nathan The Boy Who Cried Wolf, and especially now, don’t intend to introduce it any time soon. We don’t want to fuel any fire not for him to work hard, but can’t complain too much if there is a positive net gain.

Both conductors keep apologizing that Nathan is unhappy, thinking it’s something they are doing wrong. We try to reinforce to them to keep doing what they can, that it may really be Nathan resisting, and not any physical malady that they are responsible for. As a parent, I’ve even tried the “Now that you’re six, you have to work extra hard…Big boys stand tall, work to get strong, and show what they can do.” I don’t know if it will work, but I feel we need to try. I do think he has it in him. He just has to have the confidence we all have in him.

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