Are We on the Same Side?

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.

Comments

[Kyla]

It sounds to me that you probably know what is best for Scott and that this study may not be a correct fit. It does sound like his OCD tendencies stem more from anxiety and/or SPD than true unadulterated OCD. Good luck deciding what to do, it can be so difficult!

[lora]

good luck, I'll be thinking of you.

I'm suspecting (and have always suspected) that my son has some issues with SPD. I definitely do, but thanks to therapy you almost wouldn't know it. Hooray therapy.

I'm also thinking that he is starting to show some OCD tendencies, none of which have anything to do with germs. Again, I'm totally guilty of being diagnosed with OCD, and I always joke about how I'm completely obsessive but I'm too lazy to be compulsive but I joke because I joke about everything. There isn't anything funny about it at all. It's an awful way to live.

I have a constant drive to be compulsive, but I know (again, hooray therapy!) that it would make the problem worse. On top of that, I really don't want to exhibit any compulsive behaviors for my son to model. It took a long time to find a therapist who didn't brush my SPD and O(minus C)D off as quirkiness. I hope you are able to find some answers soon.

If this wasn't already 800 words long, I would tell you all about how horrible it is for anxiety to take the place of compulsory behavior. But it does, and it's bad.

[RuthWells]

Best of luck with finding a better solution for Scott. If your gut is telling you that the current study isn't the best fit, go with your gut. It won't fail you.

[mrs. chicken]

Sounds to me like you are doing exactly what he needs. You know him best, and of course others can see sides you might be blind to, but in the end, you are his mother.

And that counts. For everything. You know?

[Niksmom]

Trust your gut. Trust that little voice that's questioning. Is the goal of the study to "get rid of" the behaviors so Scott can "pass" or will it help him develop coping strategies?

IMO, if the study will AT ALL cause Scott to think he's not okay as he is...walk away.

Hugs, my friend.

[Cyndi]

What happened? We need to know. Sorry I didn't have more time to chat today!

[Jordan]

I'll be curious to hear what you decided after talking to the doctor. I agree with everyone who has said you should trust your intuition. You're doing a great job.

[slouching mom]

I think that no one should underestimate how well a parent knows his or her child. Period. You are doing really, really well with him, IMO. Trust your instincts.

[MommyWithAttitude]

Wow -- Scott is so lucky to have parents who can relate in some small way and who are so attentive to his needs. In the end, science only takes us so far and I think you should trust your instincts regarding how to best care for him and help him learn to cope -- it sounds like you're doing an amazing job of that so far.

[the weirdgirl]

Go with your gut. Three hours sounds like a lot of time for a dubious result.

On a different note, do you find people with similar kids/families flocking to you now? Like the nurse? Because I'm getting that a lot. Even strangers. I feel like I'm talking about SPD too much, but another boy was just diagnosed in my son's class and friends of ours have their son in OT now... after I'm talking on and on about SPD of course. :)

P.S. I might be going to BlogHer after all! Can't wait to see you!

[Jenn]

"I continued to nod and smile and chuckle a bit, in the nervous sort of way you do when things hit close to home."

...am there, almost every day and hate how it comes across. That being said, it sounds as though she has some issues that needs to be dealt with in a better way.

You are doing all that you can, and that is so much more than so many get.

Don't beat yourself up and trust your heart.

[Patty]

You know, everyone has their opinion, but no one has lived with your son like you have. I too have had people basically diagnose my son after having seen him for an hour or so (most of these people aren't really qualified, either, and neither is the school nurse, however knowledgeable she thinks she is), but they don't have the whole picture.

Whatever it's worth, it sounds to me like you know your child and your instincts sound spot on. It seems to make sense that treating the actual anxiety would be the most important. Anyway, trust your instincts! Don't let how she treated you make you doubt yourself. You definitely know your son better than she does.

[Tina@SendChocolate]

loving your blog. You have an award for excellence at Autism Sucks...come and get it. Be sure to pass it on to those you find worthy.

Tina

[Tina@SendChocolate]

whoops, comment stripped the link... let's try again. --->http://autismsucksrocks.blogspot.com/2009/06/lookie-we-have-award.html

[tracey]

We don't have OCD over here, but I do understand the school issues and people not understanding that if you don't laugh, at least once in a while, you'll most likely cry instead. Perhaps you could call her and let her know that you meant no offense, but that you have to deal with these issues in the only way you know how. Also, perhaps you could point out that her stories reminded you that people with OCD CAN live fabulous lives. Maybe she sees it as a "sentence" or something that must be "fixed" but there are tons of great adults with OCD issues.

I remind myself that my son's ticks and issues may not be "normal" but that he will most DEFINITELY continue to lead a great life.