Friday, July 2, 2010

Boy Scout Camp

Well, we survived a week at Camp Ockanickon in Pennsylvania. Aside from a few bumps in the road during the week, we had a great time. It was a bit odd being one of only a handful of moms at a Boy Scout Camp, but at least I wasn't the only one. It was hot, but not too hot. We were in the Wakoda site, which was at the far end of the camp. So, it was a bit of a hike for mom to use the bathrooms or showers, but that was fine. It was good exercise! :-)

I was very concerned going into it, as we had never been at summer camp before, let alone for an entire week. Of course, I over-packed! So what else is new? I know better for next time, but had no idea how things were going to work. It turned out that all we needed to do was cook in advance for the week, store it all in containers to be reheated each day in the microwave, and I was able to store it in a walk-in fridge/freezer in the mess hall. I had to get there a few minutes early to reheat and serve it, or I ran the risk of not have any food left when I finally got to sit down at the table, but it worked out really well. The amazing thing was that he ate 3 meals a day (his safe foods), almost every single day we were there! It was the first time since he was 6 yrs old, and even then it was a real issue to get him to eat (of course, we didn't know he had EE back then). I only cooked one meal on the Coleman Stove, and that was Cherrybrook Kitchen gluten-free chocolate chip pancakes, which he shared with his senior patrol leader (and me, of course). They were really YUMMY!!! He only had an evening enteral feeding (g-tube) just before bedtime and that's something we even skipped one night.

The camp nurse (Bridget) was terrific. She had a lot of experience that ran the gamut from pediatrics to geriatric (no, I'm not yet quite old enough to qualify), and she even had plenty of experience with autism spectrum disorders! She was no-nonsense and did not baby the boys. However, she also really knows how to give a pep talk and motivate someone to do something they don't really want to do (or are afraid of for whatever reason).

The boys slept in lean-tos and the old-fashioned canvas tents (on platforms). My son chose the tent, and slept by himself every night. I was very proud of him. He was intent on overcoming the fears, dealing with the bugs and wildlife that surrounded us. I, on the other hand, decided to sleep in my own cozy nylon tent. It just felt better to have that between me and the mice, raccoons, skunks (which visited our site), etc. The last time I was there was in November for a troop camping trip and it was pouring rain 95% of the weekend so I couldn't use my tent. I didn't want to float away in the middle of the night, you know. That was my one and only experience in a lean-to. After you sweep the mouse droppings off of the bunks, and put down a sleeping pad and sleeping bag, it isn't too bad, but I definitely prefer my own tent

My son was in the Dan Beard program, which is for new scouts. While he had a very hard time with getting in the pool every day (probably anxiety), he was able to make up for it and complete his swimming merit badge requirements the last night there. He does much better with one-on-one instruction in all areas, but that isn't usually an option for most things. He earned the Swimming Badge, the Mammal Studies Badge and his Tote and Chip card, which (supposedly) indicates he has learned how to "properly" and "safely" use a knife, saw, and even an axe. They actually allow the boys to purchase knives (Swiss Army knives and lockback knives) in the camp's Trading Post once they earn that card! PARENTS BEWARE!!! You would likely have a very hard time seeing your kid use a knife without close supervision, which is exactly what happens there! Ugh! It was very difficult to balance being a normal mom with letting him do what all of the other boys were doing. Yes, he cut himself (just as he burned himself the first time he experienced a campfire), but fortunately it was nothing serious.

The biggest thrill for him was to shoot a rifle at the rifle range. I don't know why everyone is so shocked that I would have signed him up for this. I do hate guns in general, and do NOT want any in the house (although I have not been successful in persuading my husband to get rid of his father's guns and that really bothers me that we have them here). I have no problem with shooting in a controlled setting like a shooting range, though. I always enjoyed the shooting galleries as a kid, and used to be a good shot. Well, it looks like he inherited that trait. His first time, he hit the targets (all 15 shots). He passed the shooting portion of the badge test the first time out, so now he just needs to learn the rest of the info to get that badge. Oh, and the setting was absolutely GORGEOUS! It was a nice hike down a rocky hill to a stream in the woods. It was very picturesque. The archery range was also there, although we didn't get a chance to try that. We got there too late. That's something else I've always wanted to learn to do.

Again, it was a very nice experience. I am really looking forward to going again next year and so is my son. However, I'll know to pack a little lighter and I do hope that we get to stay a little closer to the bathrooms next time (the ones with the flushing toilets). I have nothing against the pit toilets, although it obviously isn't my first choice, but would prefer to have a little more privacy under the circumstances. :-) The cool breeze through the trees and the wildlife right behind our camp made up for anything and everything, though. You can see one of our visitors on the right. It was very serene and relaxing.

If you have a child with special needs, realize that the camp will not ensure that the child gets his meds on time or at all, nor will they cook the allergy-free foods for them or make sure they eat.  That is something that the child is responsible for, which is why I went along.  They are not liable!  If you want to send them, I do recommend that mom or dad go along.  It really is a good experience and there are some good potential bonding moments for you and your son.  The mess hall food at this camp is really good (for non-allergic people), it is clean (a health inspector runs it and is very meticulous), there are lots of things to do, and it's a nice camp all around.   Scouts drive hours to stay at this camp for a reason.


  1. Can you point me in the direction of articles/research in the area of EoE and ASD and/or other mental disorders (anxiety, etc)? Our youngest (age 3) has just been dx EoE. But we suspect the same for his older brother who has high anxiety and Asperger's symptoms. We know he reacts behaviorally to 21 foods plus environmental allergens, but tummy pain has just started (or he can communicate that better now) and he has terrible leg/foot pain especially after eating certain foods. Thanks!

  2. AllergyHippy, I really wish I had specific articles. I haven't been searching for the research lately, but in the past, it was difficult to find anything. I know $ is needed for any research and when I asked at an autism research center, this was one of the roadblocks. I was just pointed in the direction of some research being done into mitochondrial dysfunction and, actually, I am listening to a 2012 Mito Symposium Q & A that was recommended by a friend as someone reportedly asked about eoe/mito/autism. I just started listening, I have no idea where in the recording the question was asked and it's an hour long session.
    I will gladly share anything I find that is applicable.

  3. Interesting response to the question about research into a correlation between autism, EoE and mitochondrial dysfunction/disease from the panel at the Mito symposium ( The question is asked at approx the 48:25 mark in the recording.

    The estimate is that there are 1/3 to 1/2 of those with autism who also have mitochondrial dysfunction. Inflammation (such as you would get from illnesses, infections, and of course, eosinophilic gastrointestinal disorders) destabilizes mitochondria. They believe there is a subset of those with autism where inflammation is a contributing to the mitochondrial dysfunction.

    As for research, there have been 5 grants submitted based upon the research that shows a correlation between biochemical abnormalities and autism. As per the Dr on the panel, each and every one has been "shut down" because the autism community doesn't believe there is a connection. He expressed that it is very frustrating. He agreed to set up trials but his colleagues who submitted the grants have given up. There is a lot of work that goes into writing grant proposals and they weren't getting anywhere with the autism community. That's very sad.

    I am a parent of a child (now teen) on the spectrum and I didn't know about the grant proposals. I wonder if we in the eosinophilic community who are also parents of those on the spectrum could raise our voices loud enough to be heard so that the research will get done.