Supersize Me!

Just found out that N was shown "Supersize Me" in his Foods class. I'm dumbfounded. I just can't believe it. How did this get past me, his teacher and/or N? Not sure what to do with this information. N seems fine about it -- but is he really?

His Brother

The last few days have been interesting for me. My shoulders are tense all over again, but not because of N - it's his brother, J.

J is currently 11 years, 9 months. He is only 7 months older than N was at the onset of the anorexia. I can't remember if the beginning was Sunday or Monday, but it was like a light switch got flipped. J has experienced three days of intense anxiety, and paralization. He said that he only feels it here at home. But last night it was enough to keep him from heading out to scouts. I had asked him to sweep and he had played on the computer instead. I got after him about it, but then he obsessed over my being mad at him -- said he couldn't leave if I was still mad.

This is so unlike him. I've got warning flags going up all over, but know I need to wait before reacting. There is a major possible cause of his anxiety. His grandmother was just diagnosed with stage 3 - vaginal cancer. We're all out of sorts because of it. He insists that it isn't related -- but I'm not sure that any of us know how much our anxieties tie into fear and death. So, I'll give J a few weeks and see if we can work/talk through this.

Then I'll panic.

A Lonely Parent

Being the parent of a child with anorexia is terribly isolating. We continue to be quite private about our struggles. I really wish that the public perception of anorexia was more accurate and not so based on assumptions of the past. It would be good to speak publicly and help change these inaccurate perceptions. But the reality is that those old perceptions are prevalent and most of those around us really don't understand. And N is going through such a tough time in life anyway. I just feel like we can't openly discuss the anorexia and not have people prejudge him (because I continue to see evidence of that judgement). N is a great kid -- but it seems that the anorexia gets in the way of people seeing that.

In the past few weeks, I've felt this loneliness more than usual. I've had several conversations with people who are aware of N's illness. I thought that they understood the realities of the disease. But in these conversations, I became quite aware of how much they don't understand. I spent many minutes last week, for example, trying to explain to someone how exercise figures into the problems of anorexia. It was hard to help her understand the idea that not exercising (regimentally) was in N's best interest. The media's misunderstanding of weight right now just adds to the isolation as I realize just how much of a paradigm shift I've already had (and how crazy I must sound sometimes).

Thankfully, I have a few friends and family members who really listen to me and believe in me regardless of understanding. [Edited to include]: And I also have a wonderful community of parents supporting each other as we all go through the same thing!

A Trip to the Therapist

N's OCD behaviors have been increasing significantly since school started. So last night, T & N went and met with his therapist for the first time since January. We had some new concerns because the OCD patterns have changed some. Instead of touching door jambs and holding his breath when someone "fat" is on the tv, he has started being concerned about chemical contamination, becoming autistic, becoming gay, and masturbation. Some of these are pretty tough topics - which we don't avoid, but are trying to be sensitive about how to talk with him about them. He hears his friends bring up these topics (in a less sensitive manner) and it scares him. I've been concerned about whether our reassurances "that he isn't autistic" for example, were just feeding the OCD loop. I didn't know whether to reassure/discuss (and potentially enable the cycle) or to refuse and potentially make things much more difficult.

N's therapist indicated that it was okay for us to reassure him once -- to give him the information and reduce his anxiety. But after that, if he seeks reassurance on the exact topic again, we should refer to our earlier conversation. His therapist didn't seem to think that the intense topics were indicators of larger issues, but rather were just the anxieties N was encountering at this moment.

Other than some of this new information, the appointment was just a rehash of many concepts and principles that have been addressed before. In some ways, it felt like a waste of time, but I wonder if N needs to be constantly reminded of the ways he can address the OCD.

I also suspect that the stress of a new school year is aggravating the OCD behaviors. N is doing well with his grades and assignments. I'm trying to let him be responsible for when he does his homework and the potential natural consequences of waiting to the last minute. He's had some of those consequences and it seems to make a difference. N is pushing himself pretty hard to get all As. We don't really care about his grades - just that he turns his assignments in. But he often lapses back to that typical "all or nothing" approach. He would rather not turn in an assignment than turn in one that is imperfect. In fact, last night I drew attention to the fact that he had very little time left to do his homework -- but he was so wrapped up in finding the perfect "third argument" that I could envision his essay taking another two hours (and it was already late). So I reminded him that it was better to get the paper done, turned in, and get a B - than to not have it done at all. I don't know if that helped or not.

His doctor was very surprised to see how much N had grown -- and that his voice has now deepened (I knew that it was happening, but it just isn't as noticeable when you live with him everyday).

8th grade

School has started and N seems to be doing fine. We met with his counselor prior to school and she agreed to "pull" N out of his health class during the week of questionable curriculum. She also gave him a pass that he can use if he is ever in a class and can tell that he needs to leave (because of how he is feeling or what they are talking about -- whatever).

N is taking a Foods class that we discovered may also cause some problems. I thought it was just a cooking class, but it turns out they do much more with calories and food analysis, etc. It looks like they will have one day on the problems of obesity and another which is just about fats/oils. I'm a little nervous about the class on fats/oils because the teacher was coming from the camp that these are "bad" foods only to be eaten occasionally. So that's two more classes that he will be missing.

I think P.E. will be fine. He has the same teacher that he had last year and there weren't any problems at all. I did opt him out of a scoliosis check (they have to remove their shirts to get checked). I knew that would be an issue for N. And on top of all of this, we had to give approvals for sex-education. But that's an entirely different issue.

Health Class

I met with N's health teacher last Wednesday. She provided worksheets for a 5-day portion of the curriculum, which included:

1) Fitness - flexibility, strength, endurance, BMI, pulse, workout principles.
2) Food Pyramid - a discussion of the nutrients and important aspects of all portions of all food groups.
3) Calories - how many do you need, burning calories, creating a menu within a calorie range, ideal percent of fat in a diet.
4) Nutrition - create menu using pyramid, self assessment profile that uses emoticon to asses amounts in each area including fat, oils, cholesterol, sodium; determining exercise needed; caloric intake and expenditure summary;
5) Eating Disorders - anorexia, bulimia, obesity, movie (Little Miss Perfect).

She was willing to excuse N from the entire unit.

I'm so glad that I met with her. I (and N) could see potential triggers on most of the days. I suspect that he would be fine on day 2 -- but that's borderline. And would we want him to be there for just one day of the unit anyway? N really wanted to be there for the discussion on day 5, but I can see huge issues with that! On day 5, not only do they discuss "potential problems" from being overweight, but the bulimia discussion includes "other" methods of losing weight like laxatives, etc. I've never seen the movie, but suspect that it wouldn't be healthy for N to indulge in seeing someone else's methods of losing weight.

N was concerned about his "smart" friends figuring out that he was missing for this whole unit (yet he was unconcerned about making comments during the anorexia discussion - go figure). We'll be meeting with his new school counselor this week to determine if she can pull him out (thus N can state that the counselor "made" him leave). I think she'll be willing.

I've known this class was coming and would be an issue. Hopefully we can handle this in the best way possible.

A Question

Would you, experienced parents, answer a question?

We seem to have reached a stalemate of sorts with the anorexia. For the most part, N is eating normally. He is currently weight-restored. With growth spurts, he'll sometimes drop his weight in proportion to his height which results in a resurgence of anorexic behaviors, but usually we're on top of those drops and help him to bring his weight up as quickly as possible. He has several OCD behaviors that he just can't seem to shake. He is still quite self-conscious and is always fixating on his clothes as well as his relationships with friends. He is struggling a bit to find his identity (but I really attribute that more to his age).

Will we just be maintaining this stalemate indefinitely? Is that what recovery from anorexia looks like? Or will there be a cessation of these low level issues as he matures and stops growing? Is there more we can do to eliminate the current stalemate?

Staycation

Our family took a week-long staycation this past week. N had a few struggles, but we were so busy that he wasn't able to indulge them too much. He did fixate on a few OCD behaviors late in the week. I'm thinking that he was also tired from a long, packed itinerary which had weakened some of his strength against the OCD.

Scout Camp 2009

N just returned from this year's scout camp. This year the leaders planned a local trip for just the 11 or so boys in our congregation. N had a fabulous time! He fished, shot arrows and shotguns, rode a tube down a river, went rock climbing and even repelled. I love that the leaders also included religious discussions nightly.

We donated 60+ candy bars like we did last year. We sent them to make sure that N always had something to eat, which apparently was not a problem at all. His leaders said that N ate well the entire time. N did say that he struggled the first few days with feeling ultra self-conscious. He coped, I think, by relying on some OCD comforts, which is too bad, but typical.

Now, if I could only get him to take a shower! He is so dirty that he literally has dirt caked on the back of his neck.

Planetarium Pitfalls

N went to our local planetarium last night along with his peers and leaders in his scout/church group. He arrived home, holding back tears, telling me about a "giant scale." All of the boys weighed themselves and then pressured N to get onto the scale. What could he do? He stepped onto the scale and was, unfortunately, the heaviest of the bunch. I think he is also the tallest, but that detail didn't reassure him at all. He said that he was the heaviest by "like 15 pounds." When I pressed him, it turns out that one boy weighed two pounds less and another 10 pounds less. But to N the difference was monumental.

My first question was, where were the leaders? My second thought was that there was no way I could expect them to anticipate everything. They probably didn't even think twice about the boys climbing onto the scale.

The devastation to N's spirits has been huge. He stood back while the other boys loaded up one of the vans to come home. He rode home, instead, with two other leaders and no boys. Thankfully, they threw in a stop to McDonald's which helped N's spirits a bit. He came home afterwards instead of playing street hockey with the boys. Today, he begged me to not let him ride bikes with the boys who had come to our front door asking.

He seems to be eating fine, but he is very anxious and sad. I'll need to watch carefully and hug him a lot.

A Genetic Link Between Anorexia and Autism?

Interesting article: A Genetic Link Between Anorexia and Autism?
http://www.time.com/time/health/article/0,8599,1904999,00.html?xid=rss-topstories

I was actually more interested in the end of the article. They discuss Maudsley as being the only treatment with evidence-based success. The article also addresses problems that parents are encountering with traditional therapy that are similar to hurdles faced with autism 20 years ago.

It's good that the media is finally catching up with the reality of anorexia as a biologically based illness. Now, I just wish these things would sink in with the public (and all of their preconceived, but erroneous notions), and more importantly, the doctors, therapists and psychologists that treat anorexia.

Boy Scouts of America

We are members of The Church of Jesus Christ of Latter-day Saints. Currently, our church uses boy scouts as the activity arm for the boys' youth activities each week. That is why N is doing so much with scouting right now.

Just recently the Boy Scouts of America released their new health form which is required to be filled out annually by both boys and leaders participating in any activities. Anytime that they participate in "any event that exceeds 72 consecutive hours, a resident camp setting, or when the nature of the activity is strenuous and demanding, such as service projects, work weekends, or high-adventure treks," they are required to fill out "form b." What concerns me is that "form b" is an extended health form with a heavy emphasis on BMI.

Here are two quotes from the form:

"It is important to note that the height/weight chart must be strictly adhered to if the event will take the unit beyond a radius wherein emergency evacuation is more than 30 minutes by ground transportation, such as backpacking trips, high-adventure activities, and conservation projects in remote areas."

"Individuals desiring to participate in any high-adventure activity or events in which emergency evacuation would take longer than 30 minutes by ground transportation will not be permitted to do so if they exceed the weight limit as documented at the bottom of this page. Enforcing the height/weight limit is strongly encouraged for all other events, but it is not mandatory."

There is a doctor's allowance (that basically transfers liability to the doctor) that can override the BMI requirements up to a point. But the basic guidelines suggest that anyone with a BMI in the "overweight" category (BMI of 25 or higher) should not be allowed to participate in the activities listed above. Interestingly, they don't restrict anyone who falls into the "underweight" category.

I have several HUGE concerns with this. BMI is NOT a good indicator of health or fitness levels. It's not even a good indicator of fatness. In fact, the most physically fit tend to fall above the "normal" weight category because of additional muscle mass. My Brother-In-Law who regularly rides his bike 25 miles, is considered border-line "obese" (which is basically where the doctor can't even make a medical exception) based on the BMI scales.

Also, my boys tend to gain weight, grow tall, gain weight, grow tall, etc. If you weigh them right before a growth spurt, you are almost guaranteed that they will not be allowed to participate in the youth BSA activities because of these new BMI guidelines.

My biggest concern is for N. His BMI has traditionally fallen at around the 75% percentile. So that is where we've aimed for his weight gain as he has recovered from anorexia. He is currently above the 75th percentile for height and right about the 75th percentile for weight. In other words, he is right where we want him. However, if we utilize the BMI charts, he is just a few pounds away from being considered "overweight."

It would be completely devastating for him to be assessed using this new BSA "form B" and consequently restricted from participation in many of these youth activities because of being "overweight." In fact, I won't let that happen. I don't think our local leaders will let that happen either. I suspect that they will change activities from being BSA activities to simply "church activities" in order to protect N in particular. They will probably have to do that anyway because I think that 95% of the men in our congregation (potential youth leaders) will fall outside of those BMI guidelines anyway.

Here is a link to the new BSA health form.