I had a long conversation with the school nurse on Friday. I was leaving, after the last Math Explorations (where I get to come in every other week and play math games with the kids - you know you wish you could join me, Kristen), and decided to stop in to check about the papers I needed to complete for Jane's Kindergarten enrollment. It took the nurse a few minutes to remember my face and connect me to Scott. As she did, she looked at me seriously and asked, "Are you getting him some help?"
I explained about the study we are participating in and how I am torn about whether to continue. My concerns being that although Scott has OCD-type issues, the behavior stems from anxiety (which probably originated from the SPD). He doesn't do a lot of ritual type of activities aside from asking for reassurance and avoiding things. And, quite frankly, he's eight, isn't it fairly common place for a child his age to check with his parents about things?
"Do you want to know my opinion?" she asked.
"Of course -"
"Let me just show you how he walks into this office. He steps on this square, then this one, with his left foot, he avoids the trashcan and brings his arms in to make sure he doesn't accidentally brush against it."
"Okay -" my heart started to sink.
"From what I see here, he's very OCD."
"Okay ..."
She shared that her daughter, the same age, also has OCD. That she takes her to a therapist right here in our town who specializes in school anxiety. She went on to tell me about her husband and herself, and the anxiety and OCD issues they have. How her husband has to kiss her in even number intervals; he is unable to give her one kiss, it must be two, or four. How he checks the locks, methodically, every evening.
As she was talking, I added my own experiences, nodding in recognition. "Yes, I know", I said. "My husband and I have issues, also. We know."
She continued on about the things her daughter does before bed and how she has to sing a certain song twice while washing her hands. I continued to nod and smile and chuckle a bit, in the nervous sort of way you do when things hit close to home.
"I'm glad you feel comfortable enough to laugh at this situation."
What? Wait. Does she think I am laughing at her, or her daughter? That I don't take these things seriously?
"I can relate to what you are saying is all. I appreciate you sharing it with me. And I very much appreciate you taking care of and helping my son."
"I am all about helping the kids." She said a bit curtly.
And then I left. After an hour spent in her office, I felt even more confused.
Scott has been doing well at home, lately. He hasn't been crying before school and even though he often says he doesn't feel well, he will say, very logically, "I know I am not sick." He sticks to his allotted number of nurse passes per week (4) and even made it through an entire week without seeing her at all.
He doesn't wash his hands repeatedly. Nor does he avoid the trashcan anymore. He does ask me to feel his forehead and sometimes take his temperature. He likes to skip over the cracks in the sidewalk, but if you ask him to step on one, he will. Today, he dug up worms with Jane in the garden. He only asked me once if he could get sick and I said, "What do you think?" to which he answered, "No."
It is complicated, for sure, but I think part of the disconnect with the nurse, was that she thought I didn't think Scott needed help at all. I do. It is just that I am not sure this study, this course of action, is the right one at this time.
It takes over an hour to get to the city, then an hour for the appointment, then another hour back. That doesn't even factor in traffic or time for lunch. Scott misses half a day of school while Jane is at my mom's. It is tiring. And the doctor has made it clear that the objective of the Cognitive Behavior Therapy is to stop the OCD, and that is all that we can cover in the sessions. General anxiety and related issues are not part of the study and cannot be tackled at this time. In addition, we cannot have Scott see any other therapist or give him anxiety medication at this time, or else it could interfere with the study.
I haven't detailed the therapy session thus far, so it might be hard to understand, but I can say that I often feel that Scott doesn't fit into the requirements exactly. He doesn't tap things repeatedly or recite numbers. He might have obsessive behaviors but not necessarily the rituals or compulsions that they seem to be expecting.
I am wondering whether trying to stop him from asking if he is sick, to break the obsessive behavior, is going at it from the wrong side. Like fixing the symptom instead of curing the disease or attacking the secondary result instead of the primary problem. Why does he feel sick to begin with? How can we help him to relax, find coping strategies, like getting outside for some physical exercise, or reading quietly to calm down. I think he needs a more holistic approach, one that treats his anxiety with an understanding of SPD.
When I told Matt about what the nurse said, he just shrugged, "She doesn't know what we've been through." Which is true. Perhaps she thinks we are in denial of his problems. She did talk about how difficult it was for her to accept that her daughter had a disorder and required help from a professional.
The nurse is someone whom I have talked to many times this year. She has been my ally, the one who warns Scott before firedrills and gives him a Tums when he feels sick to his stomach. I know she is looking out for him.
Maybe she was just caught up in her own situation and I mistook her candor as offering acceptance and understanding, instead of what it was: her opportunity to talk to someone about her own problems.
Tomorrow, Scott and I head back to UPenn for his next session. I will be talking with the doctor about whether we should continue participating in the study.
And if we decide not to, it won't mean that we've concluded that he doesn't need any help. Just that we are always seeking what works best for him, what makes the most sense at the time, how we can help him to find his way.
Because, even if others are not, we will always be on his side.
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