Friday, October 30, 2015
I stumbled upon Beyond BookSmart this summer (www.beyondbooksmart.com), and found it to have been one of the greatest accidental discoveries I've made since we discovered eggs to be Alex's epilepsy control magic food. Beyond BookSmart is amazing and the tools they use to teach kids to manage their emotions, anxieties and academic tasks are effective, innovative and based on educational and neurological research. I loved their approach to learning so much, that I joined the team and am now an Executive Function Coach. I have begun to use some of their tools with Alex and Izzy and am impressed with the immediate positive results we have, even on small tasks such as studying for a spelling test. If you have a child, regardless of age, who is struggling in school, due to feeling overwhelmed with the workload and homework assignments, reading, essay writing, anxiety over test taking or any aspect of school, you would be wise to check out Beyond BookSmart. Coaches usually have an educational background, understand kids of all abilities and go through rigorous training before they ever meet a client. Coaches work with parents and students to gain insight into the issues at hand, and slowly introduce tools for better time management, emotional regulation, anxiety and academic progress. www.BeyondBookSmart.com.
Friday, August 14, 2015
As our theme this summer is gross motor skills, Alex is playing as many sports as he can - tennis, running, swimming, biking (iCan Bike program), lacrosse and gymnastics (not all in the same week). Yesterday, in tennis camp, the kids learned to serve. I was really nervous that Alex was going to get frustrated because serving means launching the ball with his lefty hand. I didn't think he could do it. But that is the beauty of having someone else teach your child--there are no preconceived instructor doubts about your child's ability, and it has been my experience that most kids will rise pretty close to expectation. I typically run during camp time, but try to catch the beginning and end. I was amazed yesterday when I sat down to watch. There was Alex, launching the tennis ball over his head using his lefty hand, and hitting the ball with his racquet for a lovely little serve. If your child has weakness in either side, try playing tennis. There are so many opportunities to strengthen both sides, and there is something about whacking a ball around that is incredibly therapeutic, for the parents too.
If you have a child with disabilities, check out iCan Shine. This is an amazing organization. This week Alex has been learning to ride a 2-wheeled bike with iCan Shine, in their iCan Bike program. It has been amazing to watch. They use a roller system on the back tire that they taper as the kids gain balance. By Friday, most of the kids are riding their own bikes! Wow, this is awesome. We have been struggling to teach Alex to ride a bike for years, with horrible results. He was at the point where he simply refused to even get on the bike. But now he rides with ease. For kids who can't quite master 2 wheels, the program offers a cool bike handle for the back of the bike for parents to grab in need. We are adding that to Alex's bike today, because he has trouble getting on and off and needs that support. Grabbing a handle is a lot easier that trying to support his bike or body-the handle will save your back. Watch a demo from this week. http://www.wfsb.com/clip/11755809/students-in-milford-learn-how-to-ride-bikes
Thursday, June 11, 2015
It's summer again, our family's favorite time of year. We are back from our incredible trip across the country and looking forward to summer fun. For children with disabilities, summer is an excellent time to focus on one or two weaknesses (needs, challenges...). Creating daily rituals and summer camp classes to strengthen those weak areas is a great way to focus the summer activities. For example, although Alex's left hand is stronger and more capable, it is still significantly weaker than his right arm, which is now noticeably longer and bigger. Last summer we put him through a camp designed to strengthen that left arm and hand, while casting his right one to keep it immobile. This summer, we have chosen not to do the summer camp, but to focus on strengthening that left arm. So, our activities are all about strengthening left. Gymnastics camp, swimming, lacrosse camp and pushups are some of the activities we will use to work that left side. Of course Alex still needs work on his fine motor skills, but there is only so much advice to "work lefty" that Alex can tolerate in a day, and so we have made a choice to focus on the large muscles. Alex's personal goal is to run the 3 miler in our annual race, The Run Baby Run Baby Ultra in August. He has started a daily running log, and is slowing working up to running 3 miles without walking. This is a huge goal for him, as the heat and intensity of the exercise cause him headaches and exhaustion, but we let him work at his own pace, set his own goals, and write down his daily progress toward them. Finally, Alex is finally tall enough to participate in the iCanBike program, which teaches children with disabilities how to ride a bike (something we have been unable to do), using a weighted fishtail. And so, in the middle of August, we take one week to focus on one goal, learning to ride a bike. And while Alex is in camp, I'll be outside with Izzy to get her on 2 wheels as well. And of course, every day includes Alex's sugar free ice cream, homemade, creamy and delicious. We love summer.
Thursday, May 7, 2015
When we were in Bryce Canyon we went on a hike across Bryce Canyon, and saw the hoodoos of Bryce Canyon. When we were in Capitol Reef, I went for my first sunrise run with mom. We also had a mindful glimpse of school in the past at Capitol Reef, and had strawberry rhubarb pie, homemade at the old homestead of the original founders.
Our focus over the last two months of traveling the USA has been trail running. We have run in some of the most beautiful places in the world. And although our gaze is set on the mountains and trails, something else keeps screaming at us and redirecting our attention: the profound poverty in America. Yesterday, we traveled through the single most impoverished town in the country, and it was the most shocking poverty I’ve ever seen. Even in the remotest, most impoverished Third World communities where I’ve lived and traveled, there were signs of life and hope. There were people engaged in productive work, preparing food and caring for children. There were businesses of some kind, even if they were only small rebottled Coke stands out of the back of a corrugated steel hut. But not in Pine Ridge, South Dakota. The scene was horrific. A handful of shops, boarded up and breaking down. A few dozen adults, high on alcohol and/or drugs, hanging around, lying around, their gaze unfocused. Graffiti everywhere, with one large message “death to the white man” scrawled across a building. Pine Ridge is a dry town. But a stone’s throw away is Whiteclay, Nebraska. According to some stats, there are 4 liquor stores and only 12 inhabitants in Whiteclay, where 12,500 cans of beer are sold every day. Pine Ridge is home to Lakota Native Americans, and located a few miles from the site of the Battle of Wounded Knee, where the U.S. Cavalry massacred 100’s of Lakota. Historical markers inform travelers of the events of years ago, but it’s the visions of today’s unfortunate souls that will impart a greater impression and lasting memory, although the two are undoubtedly connected.
After staying in a couple of KOA campgrounds as we first got our bearings in the RV, Big Bertha, we decided to avoid them wherever possible. We soon found out that most state and national parks and forests have drinkable water, showers, bathrooms, and some even have electrical hookups for the RV too. But the great benefits of staying in a park are that there are usually trails for running, you are closer to nature and farther away from other people. While I admit that staying in an RV is nothing like the “real” camping we used to do as kids where we hiked our stuff and tents up a mountain, found a flat spot to set up, went trout fishing and then cooked over an open fire, slept on the hard ground next to my snoring brother and woke up with icicles hanging from the top of the tent or a wet sleeping bag from the previous night’s rain, it is just the right amount of camping for our family. We do occasionally sleep in a tent, but the older I get the more I need my pillow (and my sleep!). So, here we are. The state parks have been incredible. We have stayed in them in Mississippi, Arkansas, Utah, two in Colorado, South Dakota, Wisconsin and Illinois. Each one has offered peace and quiet, bathrooms, trails, playgrounds and coyotes.
As we started our trip homeward, we headed north and spent a few days in the Badlands, curious to know how the area received its intimidating name and interested in experiencing trail running through this fascinating landscape. We drove through miles and miles of rolling grassland in northern Colorado, depressed and disgusted at the inhumane cattle farms that packed cows side by side in putrid conditions. We then spent the night in a lovely state park that appeared out of nowhere, and had a nice run on well groomed flat trails. We then continued through the most depressing human habitation in the middle of some of the most gorgeous rolling terrain in southern South Dakota, to finally arrive at the outcropping of crumbling mountains and deep washes of the Badlands. By the time we arrived, I was feeling queazy. The poor cows, the hopeless people, the run down shacks with piles of deserted cars and trash and mangy dogs left us all in quiet contemplation. At what point was all hope lost? Was anger and resentment and disappointment and sorrow passed down through generations, thus crippling a culture’s future? I contemplated these thoughts for 12 miles as I loped, alone, over baked and peeling clay, up and over crumbling towers, down narrow paths of grass that threatened rattlesnakes at every dip. The sky was cold and gray. As I looked around I had the feeling I was running on the moon. Some unusual characters mingled with the terrain. One man was wedged into a crack in the rocks. He looked alive. I didn’t stop to ask. Another man, dressed head to toe in desert camouflage, with a desert camouflage backpack and rolled up sleeping gear, hunched along the path. I felt uncomfortable. As this was a national park, I didn’t have my trail dog Harry Potter with me (dogs are banned from the trail), and I felt a bit exposed. I ran quickly. I was relieved to finally look up and see Izzy’s smiling face in the distance, waiting for me, looking out the RV window from the trailhead where we were parked. She had told me not to listen to my earbuds while running so that I might hear the rattlers’ rattles, and I had compromised by using only one earbud. Izzy, always nervous when I go running, looked as relieved as I felt when we spotted each other. I felt satisfied that I gained some small understanding of where the Badlands got its name. I showered and we headed eastward, toward home.
Tuesday, April 28, 2015
Zion National Park: Now I want to tell you about Zion. Oh, the horseback ride we did was great and it was lead by real cowboys! Although there was a cowboy who was grouchy. Now, we also had shuttle rides around Zion National Park and completed our ranger booklet and got a ranger badge.
Someone asked me for The Value Tree blog site the other day, and here it is in case you are looking for more blog reading...www.thevaluetree.blogspot.com. THANK YOU for reading, and feel free to comment, as your comments are not publicly shared.
The Grand Canyon is truly breathtaking. It looks like a backdrop for a movie, painted in the distance. Coming here with the kids has been a blast. The Canyon is really developed, which means that it is easy to get around on the shuttles with the kids, attend awesome ranger programs, work toward ranger badges and run the rim trail. The IMAX movie on the park is excellent too. The trails are BRUTAL! I have always wanted to run the Rim to Rim race, which starts on one rim, runs down and across and back up to the other rim, and then back again. I sort of did half that. I ran down Bright Angels Trail all the way down to the Colorado Rover, then across the bridge to Phantom Ranch, and then back again. I started to peter out about 3 miles from the top of the rim, then really petered out at the 1 mile point when the trail goes almost straight up on switchbacks. I refilled water three times at stops. In total, over 20 miles with over 5000 feet down and then 5000 feet back up again. AMAZING views of the canyon, nice interaction with the mules taking people for multi-day rides, and changes in scenery, like the Indian Gardens which are like a tropical oasis suddenly popping up in the middle of the desert, that made the run exciting. Sore today.
The St. George area of Utah remains my favorite place to run. I love running with incredible views of mountains, but I also like to run, not hike, and I am not quite in the shape needed to pop up 1000's of feet of elevation. So, I love the long trails with views that do not require so much up and down, and St. George is truly the place. There are trails absolutely everywhere you turn, great for runners and mountain bikers. We stopped in Ivins, which is next to St. George, to spend the night with friends. It was quite the luxury to sleep in a real bed, but the highlight of the trip was the hike into the hills. The kids loved it because they could run freely without worrying about tripping over a rock or falling off a cliff. We even passed petrogliphs, hanging out on the side of the rock, undisturbed. After a beautiful hike in the hills, with views of the mountains, morning fog still lifting, we headed out again, off to the steep trails again.
Thursday, April 23, 2015
So, I thought that Capitol Reef was the most incredible place I had ever been. And in fact, it was, until a few hours later when we entered Bryce Canyon. We had planned to run an ultra here, but the timing is off on this trip, so once again, we save that for another day. May something go always unharvested (Robert Frost). After some exploring with the kids, I put together a run plan for the following day. The Rim Trail follows the edge of the park, looking down over the tall spired hoodoos, an absolutely stunning sight. It looks like the backdrop of a movie set, something out of Star Wars or an imaginary land. So, I hopped on the Rim Trail and then headed downward toward Tower Bridge, incredible twin rock bridges, then on to Fairyland Trail, running amid the pastels of the hoodoos all around, and then back up a calf killing 1/2 mile to the Rim Trail and then back to the RV. Total a little over 8 miles. I stopped periodically to photograph the world around me, which I imagine will fill my dreams for years to come.
My dream, from long before Alex was born, was to be able to run with my children, to share the trail, the mountains, the oceans from viewpoints only seen on foot. Alex’s many health complications have clouded that dream at times, but still he and Izzy and I run, and as they get older it gets easier. Inspired by the fact that I ran through the Narrows without him, and wishing that he was able to run that far with me, Alex asked me last night if we could sneak off in secret for a sunrise run the following day. He didn’t want to tell Daddy, but imagined a scene where he and I returned from our run, tired and sweaty, to enjoy a hot breakfast just cooked by Daddy. So, of course, I had to tell Erik because the hot breakfast part might have still been sound asleep had I not done some pre-planning. And like a little alarm clock, Alex was up before sunrise, ready to go. We quietly dressed, filled a water bottle, tied our shoes and headed out. The campsite was sound asleep. We quietly jogged along the river to an old access road that led to a trail up the mountain. We followed that, chatting as we trotted along, talking about life next year and what his new school would be like and what our plans for the summer would entail. As we climbed to a good sitting place, I held onto him because the footing was difficult. And then we arrived. Just as the sun was sneaking into view, lighting up the mountain peaks all around us, we sat and watched. Borrowed time, that’s all we have. And this morning, we shared one small moment that will shape our memories for years to come.
Arriving to Capitol Reef is like entering an enchanted world. We traveled through snow capped mountains to get there, climbing some major climbs in Big Bertha, and passed through practical ghost towns. We also passed through an area I plan to revisit at some point, Otter Creek Reservoir, a running gem on an enormous reservoir with beautiful ATV trails in all directions. We were off to Capitol Reef, and could not stop. Saved for another day. You arrive into Capitol Reef heading downhill and all around is the reef, once under water and now exposed. The colors and shapes of the enormous mountains are hard to describe-every shade of orange and red and pink and white. We did a number of runs, but I will only describe my best one. Around noon on our first full day, when the heat was at its spring peak, I set off from the camp, going straight up Cohab Trail. I wasn’t sure if I could do the whole loop I had planned, about 14 miles, just 7 days after an ultra, but I kept an open mind. From Cohab, I went into the Frying Pan, aptly named for its hot, undulating sandstone and incredible views in all directions. It was more of a hike at that point, but I tried to run where I could. I finally reached the peak and started down, now on a gravel running trail, past Cassidy Arch and then down, down, down into the Narrows, also called the Wash, which took me through the river basin between rock that soared a few hundred feet up. The views were so incredible, the trail so challenging yet runable, I just kept going. I had my camera in my camelback, and took pictures often. After nearly 4 hours, I looped back via road and trail to the campsite, exhausted, triumphant. I think that run had been calling my name for months. I will be dreaming of red rocks this winter.
We finally arrived in Utah! I think I must have been a cowgirl in a past life, because when I enter this land of red rocks and mesas, dry air and beautiful sun, I feel that I have returned home. Everywhere we drive I see running and horseback riding trails, and I am happy, excited to get out to start moving. We spent several nights in Zion, a place I know well from our month living there three years ago, and it was a fun return. We ran, rode horses and enjoyed camping in the park by the river. Erik hiked Angel’s Landing, which was scary when a cold front moved in just as he reached the top. What a difference a few years makes in terms of enjoyment as a family. Our kids are at such a fun age now, more independent and able to enjoy everything from the history of a place to the local views.
Monday, April 13, 2015
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.
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.
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.
Thursday, April 9, 2015
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.
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.
Wednesday, April 1, 2015
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.