Dale Ball Trails, Santa Fe, NM

The day after my race, we headed up to the Dale Ball Trails north of Santa Fe. After a long stop at the Georgia O’Keeffe Museum, which enthralled the kids because we have been studying her art and trying to recreate it in our painting, we got outta town. The Dale Ball Trails have been ranked in the top 10 of the USA by many magazines. The trails were indeed awesome. My screaming left quad kept me from doing more than a couple miles of walk/run with the kids. These trails are very narrow and the drop off the side is steep and covered in cacti, I held onto the kids and dog. Despite our best efforts, Izzy took a digger and we needed our first aide kit. No cactus, but plenty of red dirt in the wound. Alex fell into a cactus in TX, and we are still picking out needles. Erik had a long run on the Dale Ball Trails and reported that they lived up to their reputation. I am still dreaming of Utah, and looking forward to getting there…those are my best trails. Last night we spent the night in Grants, NM, at a KOA that was awesome (some of them are not so great and we try to stay in the parks as much as we can). There was a flat 1/2 mile running trail we hit this morning before Mommy School, set beneath mountains with the sound of a distant train running all night long. It was truly magical.

Alex's Post: The RV Trip

Ok, so now let’s get to the RV trip. We have been running some great trails. We are now in Amarillo, Texas. We just explored a great canyon range.Though I have to admit it’s hot out there! So far it’s been awesome through the parks we have gone and the Civil War history we have learned. The carriage ride we did in the heat of 90 degrees in Charleston, SC was great too. It was so hot I dozed off. In Palo Duro TX, we heard coyotes while we were running on the Comanche Trail. I said it sounded like the Troubles coming out of Pandora’s Box. Mom and Dad said “run! run!” I mostly hear those devilish coyotes at midnight.

Cedro Peak Ultra Race

This past weekend, I ran the Cedro Peak Ultra, a 45k through the Cibola Mtns southeast of Albuquerque, NM. The race was extremely challenging, and we were either going up or going down most of the race-not much flat. Some areas had beautiful pine covered trails and lovely views of the surrounding areas, and then other parts were covered in ankle crushing rocks. At times I felt I was attacking some adventure in Harry Potter, where every step up meant rolling several steps back. I could have used a flying broom. Great race overall and the other runners and organizers could not have been nicer. As I was noticing all the cranky, crying, whining, fussy kids who were there to support one parent while the other one waited and waited, I once again gave thanks that we were in the RV. My kids, who would have joined that group of fussy children had we driven there in our car, had a grand time because they had the oasis of the RV. They hiked and played lacrosse, then spent time in the RV to have snacks and lunch and get some chill time in their beds. They watched and cheered at the race, and joined me at the post-race BBQ once I finished. When the race was over and most families were melting down, my kids were in the RV loft watching Despicable Me, while Erik and I drank beers outside in the sun. Then we had a light dinner of cheese/wine, veggies and hummus while finishing our day in the park. Then off to bed. LOVE the RV.

Palo Duro Canyon, Texas

For the past several days, we have been camping out in Palo Duro Canyon, Texas. The trails here are incredible. Some are flat, some hilly, all excellent for running and biking, with views of the mesas all around. What I dislike about running in the east are the toe trippers. Alex has so much trouble with them--rocks and roots that come at us at all times. I usually have bruised toenails by the end of my long runs in the east, and Alex usually has bloody skinned knees. Running out west, we do have the occasional fall, but so far, no major bruises. Getting used to the heat has taken some time. Regardless of the weather, Alex continues to have headaches when he runs. We have tried everything to figure them out and make them better, but the only thing that helps is a small tylenol before the run. He gets them when he plays any sport. They seems to be activated by strenuous activity. I'm hoping he is going to outgrow this problem, but for now we need to numb the pain. This trip has been amazing. Coyotes sing to each other in the evenings and we wake to the sound of turkeys cackling to each other around our campsite. Signs of wild boar are all around, but so far no sightings. It has been too hot to take Potter on all the runs, so I find myself in the middle of nowhere, looking over my shoulder for tusks. Today, we went horseback riding, which is another awesome activity to do with kids, especially if you have a child who needs to quiet time. Today, we all fell into silence with the natural beauty of our surroundings and the quiet clop of horse hooves. It was mesmerizing. Then off to lunch and nap.

Running the USA

So, we have been on the road for over a week and have run some amazing trails. The RV is just awesome. I can’t stress enough how perfect RV travel is with kids. If we had teenagers, it might be a different story, or at least we would need a bit more space, but traveling with little guys is tons of fun. Our pattern is breakfast, trail run with the kids, Mommy School, then afternoon adventure or travel, dinner outside with our grill, then reading and bed. So, our first trails took us through the battlefields of Harper’s Ferry. Our kids are really into Civil War history and this was a an awesome morning of running. We read every informational plaque and enjoyed imagining what it must have been like to live in the 1860’s. In their journals that morning, the kids sketched out scenes from Gettysburg, where we had stopped on our way to Harper’s Ferry. Our next good run was near Natural Bridge, Virginia on the wooded trails of a national forest. Then on to Charleston, SC where we ran the neatly groomed trails of Patriot’s Point. Easy footing for the kids. Our latest trail was our best so far, at Sweetwater Creek in Talladega National Forest, Alabama. We camped out in the forest, which is must nicer than being in an RV park. More secluded and quiet. This park is a huge horseback riding destination, where people camp out with their horses. So, the trails were wide and not too rocky or hilly. There was a 2 mile nature loop around a lake, with really interesting facts about the local creatures. In Mommy School, the kids recreated the ecosystem in their journals. The following day, we continued on our westward journey into Tennessee and Arkansas. We stayed the night on the site of one of the Trail of Tears campgrounds west of Memphis. The nature center was fun, and we were the only ones in the audience of the 20 minute film on the Cherokee Nation and the history of the Trail of Tears. Very interesting for all, but as Alex said, very sad. We entered the Cherokee Nation in Oklahoma the next day, as we followed Rt. 40 west.

RV Travel for Kids with Disabilities

Traveling with a child with disabilities can be challenging. Not always, but sometimes, or even, most of the time. For us, traveling with a child who is sensitive to light and noise, and whose epilepsy is controlled primarily through diet, going on a long flight has always been exhausting. We've flown across the country a few times and I have a lot more gray hair as a result. Several friends of ours with disabled children mentioned that they only travel by RV, because of the comforts it provides. And so this spring, we are giving it a try. I am writing from the road, and am here to say that I am madly in love with RV travel. It has changed our lives as parents of a child with disabilities. We get around, we accomplish our travel dreams, without the added gray hair. And here is why. You have a refrigerator, so you can keep your necessary dietary needs at hand. You control the noise and light. The kids have their own space, their own bed, their own routine that is much like their routine at home. You can stop to use the bathroom (inside the RV), but you don't need to bring everyone inside a rest stop to do it. That is super convenient, especially when you have one child napping while another has to go, go, go! You cook your own meals, which means you avoid spending money on fast food, or restaurants, or wherever you happen to stop to satisfy everyone at the moment. In Alex's case, he gets very stiff muscles from sitting in a car or on an airplane, but in the RV he can stretch out (while still in his seatbelt) and we can stop often to get out to walk or run. And if anything does go wrong, if he gets sick or has a seizure, we have our privacy and a quiet place for him to recover, which is huge. The very nature of public travel, trapped on an airplane, has always caused me tremendous anxiety. In an RV, that goes away. Of course, we travel to see the world, to get out of our routines, to experience new cultures, people and places, and that is all still possible in an RV, while maintaining the important aspects of our daily life that help enable Alex to be healthy and successful. I believe it is good for Izzy too, because she never hears us fussing about this or that which might be unhealthy for Alex while we travel. We just go with the flow, and even Mommy is smiling.

Coping with Chaos

One of the greatest challenges kids with brain injuries face is coping with noise and chaos. We noticed this when Alex was an infant. Early on, we realized that we simply could not take part in play dates. The noise and chaos of children playing together was too much for him to manage. He cried, covered his ears, found a quiet place in the corner of the room to hide, and became cranky and exhausted for the rest of the day and sometimes into the next day. Now that he is 7, and we have equipped him with coping tools, such as a high fat and low sugar diet and plenty of sleep, added to the fact that his brain continues to heal, he does much better. I can take him into Costco without him melting down. We can attend small birthday parties. Bounce houses and amusement parks will forever be outside our abilities, but those places give me headaches too. So, the question now is how do we deal with the classroom? In general, public school elementary classrooms are not quiet. One might argue that the chaos is necessary to free expression. One might argue that teachers with no classroom management skills end up reacting to disruptive behavior rather than teacher. Whatever the situation, the fact is, Alex's classroom is noisy, and he is so exhausted every day that adding the many therapeutic activities to his day which we have followed for the past two years has become impossible. His classroom last year, in kindergarten, was very, very quiet. He complained all the time that his teacher was too strict. But we all know that her quiet classroom allowed Alex to manage school, after school activities and to go the entire school year without a seizure. Alex has had 2 seizures in the past month, both of them occurring at school. His poor little brain and body are dragging to get through every day. By bedtime at 6:30pm, he looks horrible. His face is white, with black circles under his eyes, which are, literally, crossed. His weekends are tough, because he is pooped. His appetite isn't good, which makes controlling his seizures through diet very difficult, and his ability to learn has been greatly diminished. One of the most telling moments in Alex's understanding and expression of his neurological condition occurred at the end of last year. I rode the noisy schoolbus with him to the library for a field trip. As we sat in a silent classroom, listening to the librarian talk about the library, Alex looked at me and said, "Mommy, I know it's quiet in here, because I see that no one is talking but the librarian. But all I hear is ringing in my ears from the noise of the schoolbus." We listen to Alex. We take his comments seriously. He is earnest. He is honest. And he wants to be like everyone else. So, when he tells me that something isn't working, I believe him and we work to find a solution. And so, how do we manage the classroom? This week we experimented with a possible solution. I home schooled him for the day on Wednesday rather than send him to school. We had an amazing day. Alex woke up exhausted and cranky. But after an entire day of quiet, concentrated work, coupled with periodic exercise and plenty of healthy food and high fat, he was a new kids by the time we had to pick up Izzy from school. He completed high level math work, science reading on theory, hypothesis and laws, a science experiment using vinegar and baking soda, a social studies reading on J. J. Audubon with an art project, a reading assignment on Edison with Q/A, watched two episodes of Magic Schools bus (digestion and the solar system), created a poster about Mercury from the library book he read, practiced his piano and did a full 30 minutes of lefty exercises. He then had a piano lesson. You would have thought he would be exhausted from all the reading and thinking and writing. But he wasn't. He ate a huge lunch and dinner, went to bed peacefully, and slept for nearly 11 hours. He went to school completely rested. So, I guess my point for parents with children suffering brain injuries is that your child is not just being "bad" (as we were often told) or "difficult" when he cries at bounce house birthday parties or melts down at the movie theater. His brain can't cope. It would be like you going out clubbing after being awake for 24 hours. Not fun. So, redesign your life so that you set him up for success. And if school is giving him trouble, try something new. Help him find quiet space to think and learn. It's your right and your responsibility.