Remembering We Are Their Advocates

When Finn was first diagnosed, I remember my friend Anne, who is a doctor by the way, telling us that it was our job to be Finn's advocate. It may seem like an obvious thing for someone to tell you, but it can be hard sometimes, when people have way more education and experience than you do, to really stand up and stick to your guns. And really, we only ever had one big incident where I felt like we butted heads with the doctors. It happened during a hospital stay pretty early on in Finn's treatment and we were frustrated because our attending wasn't the doctor on the floor and we felt like the doctor who was there wasn't really listening to what we had to say.

And sometimes you doubt yourself. I remember talking to one of Finn's chemo nurses one time and I was telling her what I thought was going on with Finn and I wondered if I sounded like a complete idiot and so I added, "You know, because I have such a vast medical background." She laughed and said, "I learned long ago to listen to what the parents say because they're usually right." That made me feel better.

So all of this is to lead up to the story of What Happened With Finn at School Today.

Eamonn and I stayed up until nearly 2 a.m. last night talking about our options. It was an upsetting conversation because I felt like I'd really let Finn down by letting the teacher tell Finn I couldn't come to school. Eamonn and I reminded ourselves that just because Finn is no longer in treatment, doesn't mean we stop standing up for what we believe--even if it makes us unpopular. Erin reminded me that I've been pretty good about doing what I think is right and not caring what other people think. It's mostly true. I don't want people not to like me, but I guess my feeling is that in the end, we need to cut to the chase and get a job done. I try not to to be a bull in a china shop though, if I can help it.

We wanted to show the teacher that while we didn't want to undermine him, Finn was our first priority. And after the debacle of bedtime last night, it was clear that Finn is in a crisis. We were really worried about his health. Stress is bad for kids, too. So we put a little action plan in place.

First, I spent a load of money (Eamonn, avert your gaze from the Visa bill this month) at Barnes and Noble yesterday in Denver (we went down to go to the zoo and see Thomas the Tank Engine--pictures later this century). I bought several books about going to school, the most effective of which seemed to be The Kissing Hand. I remember Declan's kindergaten teacher (Oh Mrs. Durrett, how I miss you!!!) reading it to him on the first day of school and he acted out the story with little popsicle stick puppets. So, so sweet. So anyway, we read the story, Finn listened to it on CD in bed last night, and I made him a kissing hand to have in his pocket today. He keeps asking me to kiss his palm and last night he did get out of bed because he had unclenched his hand and was worried my kiss escaped. Sweetness. Declan wanted a kissing hand, too. Finn also went off to school with one of his trains and a lovey in his backpack today. Normally not something we'd do, but extraordinary times. . .

Eamonn planned to walk Finn to school this morning. Our goal was to see if Finn was truly having trouble separating from me, as the teacher kept insisting, or if there was something bigger at play, as we think. Eamonn was going to let the teacher know we had sent an e-mail with meeting time options for Tuesday morning so that Finn's occupational therapist could attend. And then Eamonn was going to say that I would be coming to lunch. Telling Finn I would be there for lunch was the only way we were going to get him to go to school today. He had to have something to look forward to.

It didn't go off without a hitch, but it was better today. Finn cried and was very upset when going into school. Eamonn delivered the news that I would be at lunch to the teacher who later e-mailed me and asked me not to come. I wrote back and said with all due respect, there was a lot more going on here than he could understand right now, and while I could not honor his request, I hoped that when we met on Tuesday he would develop a greater understanding of Finn's issues and where we're coming from.

Then I called my Mom. And she said it was time to call the principal. Which I did and which ended up being the best decision (Thanks, Mom). She jumped right on board, and without alienating either us or the teacher, she has made some suggestions to the teacher for immediate change with further changes to come after the meeting tomorrow, which she will also attend.

With that said, when I arrived at school for lunch, the teacher hadn't yet talked to the principal or seen my e-mail so he asked me not to stay. I stayed anyway and it was like a 180 from last Friday. Working in Finn's favor was the fact that the lunchroom was much quieter--they were using a microphone system instead of yelling or whistling to get the kids' attention. The difference was noticeable in Finn. He sat down, he went through the steps he needed to do to eat, he sort of ate, he talked to his friend, Jack, from preschool, and Jack's mom who goes to eat lunch with Jack every Monday. It was all good. No tears.

Eamonn also went over and observed from a secret spot. He was trying to see if I had exaggerated the lunch scene. And of course, it was so different today he now thinks I'm crazy, but I'm used to it.

During lunch, Finn said to me, "Let's make a deal. If you'll come outside for recess, I won't cry at school anymore." I about fell off the lunchtable bench (as if it wasn't awkward enough to sit there anyway). We made a pinky promise and out we went for recess were I lifted what I estimate to be the equivalent of two tons of kindergartners up so they could use this monkey bar/zip line type of thingy, and then started a round of freeze tag. I went slow so they could catch me. Right.

It was just slightly awkward because the teacher was meeting with the principal right there on the playground so I knew, of course, they were talking about me, but oh well. I've long since determined my pride has no place in child rearing.

At the end of recess, I walked Finn to line up with his class. He started to get a little downcast and sad, but he muddled through the rest of the afternoon. The teacher pulled me aside and said he looked forward to meeting tomorrow and that he would bring his mentor teacher as well.

I had a quick conference with the principal and while I know we have our work cut out for us, I am cautiously optimistic. The teacher seems to understand that this isn't personal and we want to work with him. I'm looking forward to hearing how the occupational therapist walks people through understanding SPD because we're still in the learning process, too, which I made sure the teacher knows.

I don't think I know it all, but we do know our kid better than anyone.

Tonight Finn did talk about not wanting to go to school and not liking it, but there were no tears and he was in pretty good spirits. Baby steps. It's all about the baby steps.

Thank you everyone for all of the posts and e-mails and advice. I like knowing you're there looking out for us. Plus, I now realize I have a full complement of people who will serve as assassins if I ever need them.