Monday, August 30, 2010

How We Traveled

Some of you may know that we have an AdventureVan that we purchased nearly a year ago. It will probably be our main mode of vacation travel going forward, but for our cross country trip we had the pleasure and good fortune to be able to borrow Shawn's parents' RV.

I've never thought we should own an RV. I always thought of us as "real" campers...dirt, tents, campfire, no shower. but now, I'm not so sure. It was really, really nice to have a bed, make that 3 beds, and a toilet and a shower! and a sink, and a microwave/convection oven, and the infamous hot box of death (the toaster oven). We also had a full size refrigerator, and room for all of our snacks. Owning an RV is now on the list of "hmm, maybe that would be cool."

This particular RV is a 2004 Pace Arrow. We also towed a Honda CRV, which acquired a Thule box for our leg of the trip. In total, we had a 34' RV with tow, so we were probably about 50' long. We did use the tow car several times to tour on roads that were smaller, and to zip around Yellowstone National Park. While it makes things more difficult to travel with a tow car, I was glad we had it. It also made me feel safer, because it gave us another way to get out of the desert should our primo ride have trouble.

In the picture above you can see one of the "slides." That's the front room, or living room that slides out. The couch then unfolds like a futon and that's the bed where Jack slept. It's a decent sized bed. Shawn and I have slept on the couch several times...and I took a nap there once while Shawn was driving on this trip--just once I swear.

Katie is not talking to her stockbroker here.
Katie slept at the dining room table. You can see here on the left, Katie is sitting at the table (she's on her headset playing "Talking Tom" on her iTouch..that is another story altogether). The wood behind her is the head board. The table unhinges from the wall and rests on the edges of the bench seats, making a slightly-larger-than a toddler-sized bed. It was sort of a pain to put the table up and down, but in the evening it was part of the routine that changed our "car" into our "home". Katie was perfectly happy taking a nap on the bench while we drove, the seat belt snapped around her waist as we bumped along. Jack, who never naps in the car anymore,  put his head down on the table a couple times and snoozed on the days when we woke him up too early.

Shawn and I slept in the back in the Master Bedroom, which has a very comfy bed. There's another slide in the back that creates enough room so you can walk around the end of the bed and get into the drawers under the wardrobe.  I loved the light setup in the master bedroom. I really enjoyed my book light, even if I only read ten pages on the trip.

We are hardly tiny people (Shawn is 6'5" and I am 5'11"), so the whole setup was cozy, but  RVs are like boats, so it was all laid out so well, wand everything had a place, except our excess of jacket. Moving about, finding a place for everything, life, was much smoother than I thought it would be.

The Minor Things I Would Change if I Had a Magic Wand:
big stretch
  • More seat belts. This RV was clearly designed for two people traveling without guests. There is only 1 seat belt at the dinette. There were two on the couch, and the two seats in the front for driver and naggravator (yes that's what we call my position navigator + aggravate).
  • Change the movable rocking recliner to a permanent mount chair that turns...and add a seat belt. This seat is behind the driver side, and is basically unusable while driving. It did do a great job of holding our backpacks throughout the journey.
  • Give the sanitation hose its very own compartment separate from the clean water, cable and electric. 
  • Add more plugs in the kitchen. We use a power strip. It works fine, but anytime I can get rid of a power strip I am a go.
  • Add more plugs in the front. 
  • Okay, add more plugs everywhere and have them be able to be used while we are driving. We have this problem all the time now, in every car. We just have way too many things that need to be plugged in.
Overall it was an amazing way to travel. Really. In spite of whatever hazards we encountered, it was still pretty great. Let me tell you..being able to take a bathroom and a refrigerator everywhere you go? So awesome. Kid needs to 'go potty' sure.. go for it. Need a snack? Sure. Let me grab you something from the snack drawer kiddo. Want a sandwich Shawn? Let me get you some chicken salad on wheat. Oh, another soda? Just a moment. Got to go potty again.. no problemo.

I know we could do most of those things in a smaller form factor, but the RV really felt like it was just the right size for our not-so-little family of four. It will be a completely different experience to drive in the AdventureVan which I am already itching to do. Katie said, as we pulled in to our driveway last Sunday, "When can we go on a big trip in our AdventureVan?"

Just another way I  know we had a good time crossing the country... I keep wanting to wake up in a car the size of my first studio apartment and make breakfast.

Friday, August 27, 2010

Early exits...

Life with Jack sometimes requires an exit stage left before the final act and other times, it's time to leave before the chorus has finished warming up. In some cases this leads to disappointment for his family, in other cases it leads to new, fun opportunities.

Our visit to my Aunt's house was a case of the former. We had driven to the birthplace of my mother in upstate New York, a place I had visited only a couple times as a kid. We attempted to take my children to see where their Oma grew up - corn fields now turned into sub-divisions. We got into town late afternoon after a fun visit with my cousin and his family outside of Syracuse and headed straight to my Aunt's house. She welcomed us very warmly and we had the wonderful surprise of another of my cousins and her youngest son who had just been accepted to college (Go NU Cats!). We got settled in for a nice visit and dinner of corn and beef on 'wick. The food, and the fact that there was a cub cadet tractor in the garage hit on all of my fond memories of my prior visit to my mother's home town. As we socialized and Katie dug into my Aunt's collection of grandkid-reserved babydolls, Jack began to let us know he was not happy. First this was just his vocal complaining. Shortly thereafter, he decided he didn't want to sit still. Now in our house this happens on occasion but is not much of an issue. Our house has a very limited selection of breakable items within reach of "long-arm Larry" (as his sister likes to call Jack). This cannot be said of most of the houses we visit with Jack, so his parents are always on guard.

We tried bringing Jack's wheelchair into the house to see if that would help as it frequently makes him feel better and calm down. In this case, no dice. Jack was done and wanted to go. His mothe, his sister and I were nowhere near done with our visit, but Jack was over this and was being very clear in his need to go. So I swept him up to sit in the car (which made him feel better) while his sister and mother wound up their chats. I don't think I got the proper chance to say goodbye to my Aunt, Cousin or her son or even thank them for a nice dinner. This is a cousin who I hadn't seen in years and who showed me endless hospitality while I was in college. It's an Aunt who I have not seen much in my life, but who I would have liked to spend more time catching up with. In short, a visit way too short for my taste. The postscript on the story is that Jack had a very good reason for wanted to leave (one which I will not go into) so I certainly couldn't be upset or angry with him.

We had another notable case of an early exit on our trip. This case, was in the visitor's center in the Grand Teton National Park. Jack, Katie, Jen and I all stopped in the Teton visitor center to check out the Native American museum and to check off some boxes towards Katie's latest Jr Ranger badge. The exhibits were really neat, but sadly the museum was not overly wheelchair accessible (Jack was very tired so was riding rather than walking). The downstairs was not easy to get to (I'll be honest, facing the stairs and not seeing an elevator I didn't get much chance to look for accessible options) so Katie and Jen headed down to look at more exhibits while Jack and I stayed upstairs. Jack and I did a second circuit of the upstairs which I was enjoying but which Jack was showing less and less patience for. I decided to throw it in and head outside to hopefully get Jack back to happy again. We navigated back out through the doors to head out to the parking lot and did a quick 3-4 laps of the parking lot looking for all of the bumpy spots (wheelchair offroading is rad don't let anyone tell you different). Jack started to feel better and dad had started to Shvitz as it was rather warm out. So I found a bench in the shade to have a sit and just start waiting for Jen and Katie to finish their activities.

This was the point where something somewhat bad turned good. Jack and I got to hang and he was back to feeling good. Normally he would want to be off by himself, but at this point he was down with hangin' with the old man. Now Jack is definitely an on again, off again interactor with others and so any time he is on again, I am thrilled. At this time, sitting on the bench in front of the Teton's visitors center I asked him for a high five and got one. Asked him for another and got another. Now we were having fun. We started a vicious tickle fight interspersed with high fives (OK an occasional "too slow" from his dad just to keep everyone on their toes). We probably had a half hour of playing together before Jen and Katie were done and it was some of the best times I had on our trip. For parents of kids with autism any interaction can be exceptional and this for me was really awesome and so much better than any museum.

Sometimes an early exit can be disappointing, leaving you feeling you missed the show. At other times an early exit just means you are the first one at the after party and get all the good drinks before they are gone. You certainly can appreciate getting to see all the acts when you can, because you never know when you'll need to head out to start a tickle fight.

Thursday, August 26, 2010

Press on Regardless...

A favorite saying of mine and a philosophy I try to live by given the chaotic life we live. It's the name of a road rally run in the Detroit area for the last 60 years and represents much of the spirit of rally. For those of you not familiar with rally racing it's perhaps the most exciting and interesting form of motor sport in my opinion. Not only do they turn both left and right (I'm looking at you Nascar) but once on the course the driver and navigator are unsupported and must do what is necessary to get their car to the end of the rally stage. More than a few times there have been rally cars crossing the finish line on three wheels after one was ripped off in a crash. Driver and navigators not only have to be experts at their primary jobs, but also crack mechanics, adaptable tinkerers and persistent problem solvers.

So how does this relate to traveling in general and traveling with a kid with special needs? Press on regardless! Things will not always go smoothly but despite that keep going. The funny part about our travels is we were expecting the challenges to be in the kids adapting to travel. In fact, they were the least of our troubles. We had out share of mechanical issues, a couple cases of getting lost and came very close at one point to running out of cold beer. In all cases, a big part of the adventure was in overcoming these challenges. Life would be boring if you didn't push things and crash on occasion. The best stories are often made from overcoming adversity, persisting and finishing the challenge.

Monday, August 23, 2010

Looks like we made it...

Landed yesterday, back home after a nice drive from South Lake Tahoe after a visit with Jen's sister and brother in law and their two kids. Katie and Jack got to start their trip with a visit with their cousins and end with a visit with cousins (2 sets in fact). My sister and brother-in-law were in town (the same ones we started our trip with in MD) and we got to see them and their two daughters after we got back and dropped off the RV as well as see my parents - all a great way to end our journey.

So, how was it now that it's over? In short, fantastic. Folks at work asked me about it today and my summary version was I would turn around and do it all over again. I do love a good road trip and we are lucky that as of now, the kids appear to share our love for the road (with minor modifications for daily pool time and playing in the dirt). My guess was this would be the case as Jack has always liked being in the car. I recall during some of the darkest days when he was younger, upset and not sleeping, I would take him on mini road trips through the Santa Cruz mountains above our house. We'd drive much of the night, sometimes from Los Altos all the way up to Daly City and back. It's a good thing our family is well matched with our love for fossil fuel motivated travel as a means of relaxation.

Is it an end or a beginning? The end of 3800 plus miles of seeing much of our country but the beginning of both more blogging (now that I am not driving all day I potentially have more time to write) and the beginning of planning the next trip. Yes indeed more to come...we've already started talking about where to go next year.

For anyone thinking of taking on a road trip of this magnitude, my advice - go for it. This was one of my least planned trips and I knew going in that we'd be figuring out a lot from the road. That was part of the journey and part of what made this not just a trip, but an adventure. I guess I prefer life to have a certain level of adventure in it. Raising kids in general and certainly raising a kid with special needs is always a good source of adventure. It may not always be easy and at some times not even fun, but it's usually guaranteed to not be boring. When I go out I can assure you it will not be death by boredom.

Sunday, August 22, 2010

Tickle Tickle.

Jack and Katie got along very well on the trip. Actually, they interacted in new ways over the last couple of weeks. Katie continues to grow, and shows great compassion towards her brother. She is fantastically kind when it comes to sharing even the best of treats. She also has a patience with him that is remarkable for a 4 year old, understanding easily that he needs a hand to get down the stairs of the RV, or that we might need to wait for an elevator in a crowded place because we are using Jack's wheelchair.

Jack has started to initiate more play with Katie. In this photo he is reaching out to tickle her foot, and I just happened to turn around and catch him before she reacted. They spent quite a bit of time playing "tickle fight" with toes a-flying, and Jack was almost always the instigator, gently tapping Katie's toes until she responded, mostly with shrieks of happiness.

To compress it, the images are a bit grainy:

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Saturday, August 21, 2010

My Sister's House (Shawn's Visit to D.C.)

[editor's note: I was supposed to post this nearly a month bad that you are reading out of sequence...]

My sisters are awesome (I only got to stay with the older one this trip). I know I don’t tell them that, which make me a bad person…no wait, perhaps just not perfect, human indeed, which was never been in question. But back to it, this is about my older sister, she’s great and her family is awesome as well.

We descended upon their home in full force after a long cross country flight. Jen could only stay a short while before she headed to a conference in NYC, which left me playing zone D with Katie and Jack in a full house – 2 kids, husband, 2 dogs, her parents and lastly me and my 2 kids. It’s a lot within a week filled with normal work and kid activities so I appreciate how much she made us feel welcome. Before I digress too deeply, let me mention her two girls – J soon to be 13 and M 10 years of age (about the same as Jack). I haven’t had near enough time spent with them to truly know them, but they continue to impress me. Artistic and smart beyond their years. At their age I cannot imagine having a pair of cousins like my kids descending upon your house and not feeling a little freaked out.

I don’t know how their parents, my sister and brother-in-law prepared them for us, but either they did a great job in prepping or a great job in raising – likely both. We felt very welcomed and Katie immediately made herself at home playing with all of their stuff and generally being so very 4 years old wanting to hang with the older girls. Jack had his typical ups and downs, luckily more up than down.

My sister has a huge basement guest/play room and we made ourselves right at home. Jack adjusted well to the new environs and timezone and I actually had some of the best 1 on 1 interactions with him in a long time at their house.

Back to my nieces, I still can’t wrap my head around what it might be like to have a boy enter your home who is very notably different from you, despite similar ages and backgrounds and yet so very different. He doesn’t talk, makes odd noises, and runs around crazily much of the time. Now, he’s staying in your basement, messing with your stuff. Yet they show him kindness, patience and somehow understanding beyond their years. Interacting with Jack is a challenge, even for his parents, but they did not avoid him and did their best to engage and ask him how he was.

For his dad (that’s me) they did the best thing I could have hoped for – entertained Katie. She had her fingers, toes and even arms and face painted and in general got to look up to the older girl cousins which she has never met [editors note: She met them when she was 6 weeks old]. She loves them. She talks all about them on the way to their house and after we leave. She sees what they do – art, dance, math and science. All of which, hopefully is a positive influence on her life so that she knows you can dance ballet on pointe in one minute and paint a picture the next or do a science experiment. 

On the other side of the coin, I hope that Jack brings a positive influence to them (and I believe he has and does). Treating people who are different just as people is a great skill. I can’t say I was great at it throughout my life but I try and as I grow older I understand more about how important this is. J and M while still in their formative years (whatever that means), already have skills in this department well beyond whatever I had at their age despite my growing up in an area of our country where differently-abled people congregate. As an uncle I am proud of J and M,  and the character they demonstrate and are developing. My sister and brother-in-law deserve praise for raising two such wonderful people. I only hope that my kids can know what great people surround them, and in time, that they can realize how they can also contribute positively to the world around them.

Worth the Money.

How much are you willing to pay for peace of mind?

I think parents of special needs children shell out a lot more money on their kids than parents of typical children.. special cups, wheelchairs, fancy pants that have an elastic waist, and double padded knees.

When it comes to being able to relax a little, know our kids are safe, we will almost always put our money there. On the road, we discovered it was worth it to pay a little more for a KOA Kampground over most independent campgrounds. Not that an independent campground can's be as good, but with a life as unpredictable as ours can be, knowing some things will sort of look the same, or have a similar standard has been really helpful. Apart from the last KOA, most have this cool jumpy pillow, a pool and some sort of playground. Most of them have a good selection of groceries at their store, and for some reason nearly every one of them had Ranger IPA from New Belgium Brewing Co. which was a welcome relief from the Tequiza and Bud selections of other places.

One of the best features we found for the first time at the Mt. Rushmore/Hill City KOA:

Yes, that's a corral of sorts, and here is another one, at the Cody KOA:

Notice the awesome extra blocker fence.
The grown up bench is on the right under the little roof part.
If that looks like cruelty to pen up your children then you have either never been to an RV park, and/or you do not have a child with autism. RV parks are filled with vehicles, mostly driven by people who are paying attention, but I know how tired we've been when we've pulled over for the night. These little rails keep kids safe, and many of our children just need a gentle reminder about where the boundaries are. Most kids, even neuro-typical ones,  need reminders, instructions, about how far away they can be, do we need to be able to see them, and which activities are approved within the larger environment. These little corrals gave Katie a definitive boundary of where she could play where we all  knew she would be out of the street, and while Jack could have slipped through the rails, he never did. The simple split rail fence let him know where he was allowed to play, and the benches beside the playground at the Cody, KOA, gave us a place to rest (our beers) while the kids were playing. FYI, no alcohol, glass or pets are allowed in these kiddie areas.

These two campgrounds in Hill City and Cody were the most relaxing for us because we had a place to be. Whereas camping in the woods provides an endless supply of sticks and rocks and stumps and bugs, it's harder to find nature in an RV park, and if we can't have nature, I am happy to have structure...a play structure.

Friday, August 20, 2010

It's Been a Hard Day's Night

Thursday was a long day, Thursday night was even longer, and not in that "oh I got so much sleep" sort of way.  I will admit that I have not disclosed some of the rougher moments of this trip. I plan on making a list, and offering some of the solutions we had, or should have had to make our time easier, but last night was so bad, I would feel deceitful if I pretended like I wasn't brought to tears by my son, and had barely enough patience to make it through the night.

We drove from the Bridger Teton National Park, where we had two lovely nights, all the way to Provo, Utah. It was a hard drive. It was windy for 200+ miles, then we hit Provo rush hour traffic set against a backdrop of the sun in our eyes and 30 miles of construction, including uneven pavement and cement barricades with no shoulder. Add Jack having eaten about 60 granola bars, making him extremely regular, and Katie's current need to be fed every 26 minutes, throw in several close calls with small cars who cut us off, and a mix up at the campground requiring us to change spots twice, and you have two very tired parents.

Shawn set up, I took the kids to "the park" which was really some old truck tires half buried in sand and a rusted swing set. Katie was thrilled, Jack, less so. No gravel here. Everything was kind of grubby at the park; it was clearly our second choice, but, it was a place to stay for the night and it had a pool. When Shawn had breathed for 10 minutes he came over to take a walk with Jack while Katie and I swam in the cold pool for 15 minutes just so she couldn't say we didn't take her.
Jack leading Shawn

Dinner was normal, as normal as it can be when you are using a toaster oven to cook strips of beef, pieces of salmon, garlic bread and corn dogs all at the same time. Everyone has been so hungry on this trip, that meals have been frantic, but that's not all that different from being at home.

Something went wrong after dinner. Somehow we missed the window for Jack to go to sleep. Jack has had horrible sleep issues over the years. I think everyone knows the 52 day episode when he just didn't sleep longer than 10 minutes at a time. Things have been more under control in the last few years, if for no other reason than we have made Jack's room safe enough to leave him there by himself, awake. This doesn't mean I don't check on him during those sleepless nights, I do, we do, all night long, but it is just not as stressful as it used to be. We get tired, and it's not fun, but no one gets completely overwhelmed anymore.

After dinner and jammies, I read from the Laura Ingalls Wilder book, Little House in the Big Woods. Jack has really been listening and enjoying the stories, and Katie loves that Laura has brown hair and is spirited like she is. I'm happy reading because I loved the books as a child. So I read, one chapter, two chapters, and still Jack would not lie down.

We turned off all the lights, closed every blind, gave him more blankets, then gave him a snack, and another snack, and some milk, and some water, and I read another chapter, and I rubbed his back, and I petted his hair. Shawn took a turn, I took a turn. He was up and grabby, pulling things off the counter, climbing on the chairs, trying to get past the "Jack blocker", which is basically a net strung across the front of the RV to keep him from getting  to the electronics and the driver's side instrument panel. He grabbed at his sister, who has been game to spar in most wrestling matches, but at 12:30am, she was done. We tried to put him in the back bedroom, but he kept standing up on the bed, threatening to crack the lamp above with his head. It was Shawn's turn to be on watch. I went to grab my shoes to take out the trash and Jack ran into me, knocking me against the dining table edge. My head struck the wood so hard I thought  for sure I was bleeding.

The RV is just not that big. It is of course. It's a behemoth, and spacious and plenty of room for our family, and yet it was not even close when it came to containing Jack. He swept everything off the counters. He got into the sink. I tried to let Shawn sleep, knowing we had a big drive Friday. I laid down next to Jack, kept tugging at his shirt to bring him back to his place on the couch bed. He started pulling my hair, hard. He pulled back my hair and bit at my face, including my very sore forehead. He did it again. And again. He jumped on Katie. He leapt at the door of the RV, which we diligently lock. He jumped onto the bed. He crashed down on me.

Crying, I went to the back bedroom, startling awake Shawn, who jumped to help me. We discussed our options. We always carry liquid Valium with us for situations like this, when Jack is unsafe, or making others unsafe, and cannot be brought back to within normal range with all of the usual incentives. We don't use it often, maybe 3 times a year. We gave him a dose, and I took Katie into the back bedroom with me. It was nearly 3am by this point. Five + hours of restless boy wandering pacing the 34 foot RV. Jack wasn't trying to hurt us, he wasn't crying or even yelling. He was goofy and wanted to play and wrestle. He's never violent, he just doesn't really know his grip, or his strength.

I fell asleep next to Katie, Shawn never came back to bed. I heard Jack make some squeals at 3:50am, the Valium clearly never really worked, Shawn just stayed with him, keeping him safe until they both fell asleep eventually

Great Basin National Park

Jack didn't get hurt. Shawn and I didn't fight. Katie wasn't injured. We survived, and had a great day today. We visited Great Basin National park, which was beautiful. More happy thoughts and more photos tomorrow.
Right now everyone is sleeping and I don't want to miss my chance for uninterrupted sleep.

Thursday, August 19, 2010

Meeting Maddy

It was almost dark when we pulled in to the campground in Ohio. I went to the door of the manager's office, and the sign said "Will return 9:00."  I am an eternal optimist (HA!) and hoped that it meant in eleven minutes at 9pm instead of 12 hours later. We had a reservation, called in hours before, but there were no instructions left for us taped to the door. Most RV parks/campgrounds will do this, so you can still find your way in the dark.

As I stood there on the porch, looking back at the RV, knowing that my children were probably yelling at my tired husband because they so desperately want to get OUT of the RV when we stop, I thought I might die of exhaustion. I wilted a little in the heat, and began to survey the campground hoping I could figure out a solution.

Out of the brightly lit laundry room next door, Maddy and her sister Lila appeared. Chattering like little monkeys, they peppered me with questions, Where was I from? How long were we staying? How many kids did I have, and can they go to the playground?

Without waiting for my answers, they told me just about everything they could: parents divorced, mom's boyfriend has a camper, staying for two weeks, actually 13 days, trying to do laundry, but missing a few quarters. Lila is older. Maddy is younger. They live nearby with their dad. Lila just completed a babysitting course. They have bikes.

And they knocked on the door of the manager's office spouting that it was "worth a try."

The manager came to the door, gave the girls some quarters, then looked at me. I admit I was a little embarrassed, wondering if she thought that these not-quite rude, but not well-mannered children were mine.

I told her my name and she welcomed me in to the office/general store, and shooed the girls away. As I checked in we chatted and she let me know that the girls, while sweet, were not monitored very well, so I should expect to see them at all hours of the night (she wasn't kidding.)

After we landed safely in our space, I let Shawn put out the slides, put up the jacks and make ready our camp for the night while I took the kids to the park, just an earshot away from our numbered space.

Sure enough Maddy and her sister were there at the little park. Katie made friends immediately, identifying easily with other motor mouths. I let go of Jack's hand when I found a pile of gravel. He settled down,and went about sifting the land through his fingers, getting back in touch with Earth after so many hours on the road.

He tilted his head to the side, as he often does when he is very interested in something before him. He watched the girls play. He stood up a few times, dribbling pebbles to the ground slowly, then went down on one knee to grab a few more.

Katie lost her shoe. By this time it was mostly dark. I could see the outline of the three girls, but could no longer distinguish faces. I heard Katie whimper a bit.

I had been very specific about not taking off her shoes on the playground. Lilly pulled a flashlight out of her babysitter emergency kit, and searched the grass with Katie. They found her shoe, and Lilly sat with her while she put it on.

Maddy came over to where Jack was playing.

"Hi.Uhm, how old is your boy?" 9 1/2.
"I'm the same age. When's his birthday?" October.
"Will he play with me?' Yes. Sort of. Let me explain...
"I've never heard of autism."

Never. heard. of. autism.

There are still people who've never heard of it. I don't remember ever not knowing about autism, but whatever the statistics are, whatever the numbers that people throw out there, the numbers that make autism seem as ubiquitous as heartburn, there are people who have never heard of it, and my family, in this case, will shape forever what autism means, what autism looks like, for this little girl. And this is where I am most comfortable; teaching, advocating, changing the hearts of people one family at a time. If I do this right, Maddy will know that Jack is different, but the same, that he is as important as she is. She will know that he plays and laughs and has a mom and a dad and a baby sister, and feelings, and deserves to be acknowledged, and treated with respect in our society.

I answered every question she asked, her stream of words, more river than creek. Some of her queries were hard: How do you know what Jack wants to play? What is his favorite color?

And some were easier to answer, even if I don't know the answer exactly: So does he understand me? Can he see okay? What is his favorite food? (for the record, we believe it's ice cream.)

The most remarkable part about the conversation, was that she was playing with Jack the entire time she was asking the questions. When he got up to wander, she followed him, backwards, even lightly touching his hand every now and then, and when he bent to slip his hand in a pile of sand, she copied him, right down to the same crouched position he favors. When he stood to run, making those sounds that Jack makes, she asked if he was happy, because it "sure sounded like happy."w

It was dark now, dark enough that I wasn't more than two feet from Jack anymore. Shawn walked over from the campsite with a flashlight.

I started to get distracted, the dark, Jack loose from my grasp, Katie chirping to her dad about her new friends, and losing her shoe, and finding her shoe.

Maddy quietly said to me. "I hope no one makes fun of him, ever. When I was younger I couldn't see out of one of my eyes and people made fun of me."

I told her I was sorry that that had happened to her, and asked her about her vision now. "Is that why you asked if Jack could see okay?"

"Yeah, I was wondering if we were the same, 'cause I know how it is when you can't see--when you're different."

It was time for us to call it a night. We said our goodbyes.

Maddy walked up to Jack and put her hands on his shoulders, facing him.

"I'm glad I met you Jack. Have fun on your trip."

Wednesday, August 18, 2010

Great Moments in Film, Uhm, I mean in digital

Katie in the garden at the Laura Ingalls Wilder museum in Walnut Grove, MN. She was a pistol during this visit. I should really post the picture where she is begging me to buy her a doll. Jack wasn't very happy when we went here. He had just woken up, and he needs s little time to warm up in the morning.

Surrounded by bison in Custer State Park. This makes it sort of hard for the kids to marvel at one bison out in the distance when you get to Yellowstone a day later. I've never been so close to so many for so long. Many of the drivers near us were from the Sturgis Rally, and on fancy schmancy motorcycles. As much as I would love one, I'm glad I wasn't  trying to ride past these bohemouths.

Katie at Crazyhorse. this is where we finally decided to just feed her every 40 minutes. She is growing so fast that she's cried at night because her legs hurt so much. She ate a hamburger for breakfast the day after this photo.

Jack at Mount Rushmore. It's hard to let go of Jack's hand, emotionally and physically. I never know when he's going to run, fast, and far away towards something dangerous, and yet, quite often, he shows us how  much he's grown, and learned. Here I let go of his hand and he calmy found a spot on the wall so he could look up at the faces carved in the rock. Notice the litte girl staring at him, to his right? She smiled at me a little, but kept staring at Jack. When he stepped away from the wall he touched her leg and laughed.
Jack eating ice cream at Mount Rushmore. We think he's had ice cream in every National Park he's ever been to. We also counted that he has had ice cream in California, Hawaii, Nevada, Washington, D.C., Maryland, New York, Ohio, Illinois, Indiana, South Dakota, Montana, and Wyoming. We didn't eat any ice cream in Minnesota, thereby ruining his track record.

Our whole fam damily at Mount Rushmore. I could crop this, but then you'd see how dirty our faces are.

Tuesday, August 17, 2010

Injuries Sustained in the line of (Vacation) Duty

Shawn: daily shoulder pain from turning wheel of gigantic vehicle up long windy roads, one cut on one finger, and a stepped-on foot injured during a Jack-getting-dressed moment.

Katie: constant minor abrasions which, contrary to our understanding of medical knowlede, require immobilization: "I have a scratch on my leg, and now I will not be able to use it for a week! For real life!", also when not fed every 30-40 minutes we have been told that her stomach might explode, she may perish, and she will probably expire, unless given food, or candy, immediately.

Jen: lower back pull incurred while trying to put Jack back in his seat at the table while the RV is moving, and the toaster oven is threatening to fly off the counter and into his head. Also severe "thumb-sized" burn on right thumb from same box of death.

Jack: various bumps to the head due to jumping up excitedly from the couch/bed and not realizing that he is indeed taller than the distance from the bed to the cabinets/light fixtures above the bed. Mosquito bites the size of Rhode Island on the cheek and arms.

Monday, August 16, 2010

Great Moments I don't want to forget

so I am going to briefly make a note of them them here, where I can be publicly shamed if I don't expound on their goodness although some of them are just little tidbits which need no further explanation.
  • We met a girl named Maddy in Ohio. She was kind to my children and she had never heard about autism.
  • Jack's blankets slipped off, and when I went to tuck him back in I said, "Good night tiny man. I love you." and he *said* "love."
  • Katie taking pictures with her own camera. 
  • Jack came in to our bed this morning, presumably because he was cold. He snuggled between us, something he never does anymore, and fell asleep. 
  • When Jack was sleeping in our bed this morning he laughed in his sleep. A real laugh, twice, with a smile. It must be great to be so happy you laugh in your dreams too.
  • This evening when Jack started to thrash about, inconsolable, yelling and smacking his own head (something he rarely does), his little sister had the brilliant idea that maybe Jack's head hurt. "Momma, if you put out your hand and ask him, he can just touch your hand if his head hurts. See, watch Momma." and she did, and then there was Maxalt, and then he went to bed.
  • Katie danced on stage at the Mt. Rushmore amphitheater stage.
  • We were surrounded by a herd of American bison in Custer State Park.
  • Explaining to Katie that we follow our family rules, even if we see other people breaking the rules (like maybe sitting on a wall that is 2 stories off the ground), and having her actually understand.

Sunday, August 15, 2010

Biggest Travel Challenge - Charging

I've written about some of the challenges we've had. Vehicular mechanical issues seem to be settling down and kids are in the flow (if you call falling asleep at 11pm on a good night, flow). Perhaps the biggest challenge we face, which is different than my prior travel experiences, is the need for 'the charge.' When Nerds go on vacation the amount of electronic gear is somewhat frightening. Now, Jen and I do know how to disconnect; we are talking about two people who took their honeymoon in Alaska off the grid for four weeks, and traveled Europe with just the packs on our backs. But for this trip we went connected: a blessing and a curse. Sometimes-but not always- it's been much easier to find directions. It will be more, though we'll see if better, documented with five cameras including one automatic dash camera, one automatic Jack wheelchair camera, a couple of pocket cameras, the "good" camera and even a camera for Katie, three laptops (ok, we left the house with two, but Jen won a spare in NYC, two Android phones, and let's not forget that GPS - which I think only made it to day two before the woman's voice got her banished to a bag someplace.

I admit, that's a metric crapload of electronics and I didn't even count the iPod touch. Each and every one of these devices requires batteries to be charged. We've become traveling slaves to our chargers (would that be charges of our chargers?). The front dashboard of the RV looks like the wiring project of a server room set up by a hyperactive blind monkey. We've got at least two 12V splitters, two inverters (had to buy #2 when #1 was not enough to run a laptop), and so many chargers we have been storing them individually in zip lock bags. At one point early in the trip, before we got more organized I tried to get the charger for my cell phone which was berating me for not paying enough attention to it's electronic needs. I pulled at the end of the wire and proceeded to extract a mound of plugs and wires until I was holding up a flying spaghetti monster like tangled mass of copper and plastic.

I have faced this demon before, but something about road tripping made its mass that much more impenetrable. . we had a giant ball of wire, but the charger you needed had gone off to pout about being separated from the iPod touch charger, which is so much cooler than the stupid Dell adapter you threw him in with, which is soooo like 3 years ago, as if you are simply holding him back from the charger he could really be if you just let him hang with the cool kids. Somehow these bits of wire decided to attempt to permanently bond to each other - perhaps this is where new chargers come from. After fighting through the briar patch of wiring, inspiration struck that the simple zip lock bag could keep the masses from attempting to procreate on the floor of the moving vehicle.

My parents took my sisters and I across the country back in the eighties (ok, I done gone and went and dated myself). I don't think they spent any time debating how much battery life was left in the whosit or asking if we could turn on the generator just for a bit, so the whatisit could get up above zero battery bars. Not that it was easier back then, they had to look at these things we called maps and on rare occasions ask for directions from complete strangers (which as a male of the species causes ample consternation). I am a big believer in the law of unintended consequences. All of these devices to make our lives simpler, just add complexity. Now before you call me out and tell me to just turn the darn things off, well I agree, but with blogs to update, photos to take, weather to check and directions to receive, we've come to accept that these battery powered leeches are our albatrosses of travel (and "normal" life for that matter). So you'll excuse me, I see my battery level is down to one, I must find a charger. Also the camera next to me needs to have the batteries replaced and I've got to swap plugs in this room so Jen's phone has juice for the morning.

I Wish I Was Belle with Sunglasses

A wonderful sentiment to start the day. When your 4 year old is blowing on dandelions and making a wish on the way to the camp park while wearing her rockstar sunglasses hoping to become a Disney Princess, it’s a suitable wish. Maybe even better is when Jack and then Katie carefully crawled into bed with us in the pre-dawn hours. I guess we need to keep the RV cold so the kids have to be extra nice to us. Jack was so careful and gentle coming back into the bedroom I didn’t actually think it was him at first. But he just crawled in and got cozy under the covers, joined by his sister a little later. Jen actually made me take a picture it was so cute and out of the ordinary for us.
Yesterday was a good day all around. Easy travel, good weather and beautiful sights. We got to the Badlands – which are not bad, in fact one of my favorite places. Interesting landscape and huge skies – incredibly western. Only downside, large drop-offs and few railing which makes for somewhat jumpy parents. Everyone did great and we eventually found our way to our campsite near Mt Rushmore. A KOA smack dab between Rushmore and Crazy Horse. Best one to date with tons of activities. Despite being squeezed in like sardines among all of the bikers leaving Sturgis, it’s been relaxing, especially since we are staying in one place for more than a night.

RV Park Etiquette or, What I like to call, Common Sense.

Most of the time we run into really nice people in campgrounds and RV parks, and this trip has been no exception. There is something about camping, or perhaps it's just the nature of people who camp/RV but folks are friendly, helpful and considerate. However, as in any box of apples, we've come across a few who may need to be gently reminded of a few things:
  •  do not wash your dishes in the bathroom sink of the campground. If this is allowed, there will be a separate sink for it. Icky. Icky. Icky.
  • pick up your trash.
  • if you use the laundry facilities, do not let your clothing linger in the machines (like I do at home). Set a timer. If I can do it, so can you. Also, get some quarters before you do laundry. Don't assume that your fellow campers will be able to make change for you, although I probably will if you ask me nicely.
  • don't assume I'll watch your kid at the campground pool just because I appear to be an adult who can swim. (I have enough going on, and I saw that you were just about to ask me to watch your toddler in a life vest and water wings while you went to make dinner... are you kidding me?)
  • don't let your kid dive into the shallow end of the pool. Please? I don't know this town and I have no idea how close we are to a hospital or a life-flight helicopter.
  • don't let your dog or your children run around unsupervised. There's something really creepy about a 7 year old appearing out of the black of night on a bicycle, and following you to the trash bin. ("I want my two-dollars.")

Saturday, August 14, 2010

Come Heck or High Water

So the good news is we did not end up needing an amphibious RV. When we last left you, we were parked in an over-sized van 'down by the river' in Iowa, surfing the web for flood watch info. Normally I am not one to sweat the small stuff, but the fact is that walking around the campground, it was obvious it had flooded there recently (lots of dried mud). So we decided a 3:30 am wake up to check things was in order. Alarm set, I am off for a few hours of Z's. Jen of course does not really sleep, but then again being superhuman she really doesn't need any. 3:30 comes all too soon as it tends to during late nights of fun and/or early morning rising. Up and at 'em and no changes in weather alert status. As we are awake we decide to wrap things up and hit the road.

Katie in the garden at the Laura Ingalls Wilder Museum
We have a camp site reservation for Saturday, our only reservation for the trip, so we feel compelled to make it. An early start will put us that much closer as we cross the rest of Iowa, Minnesota and parts of South Dakota. Jen had requested a stop in Walnut Grove, Minnesota home of the Laura Ingalls Wilder museum a few miles north of the interstate we would be traveling on. A great plan, semi-well executed.

Our early AM departure was accompanied by lighting so I was feeling semi-smug in our decision. The fact that we didn't really see any rain until the next state is beside the point, and only counts for you Monday morning quarterbacks out there. We hit the highway and headed north, well north, west, north, turn a little west over there... You see in this part of the country we are off of the major highways (as we in the west like to call them Freeways but being as they charge tolls in these states - Free - not so much). We are on highways but ones with two lanes and going through instead of around the small towns. Little did I know we would shortly find ourselves on smaller roads as we navigated up through Minnesota.

We are cruising along enjoying the pre-dawn electric light show. Lightening so big Jen can see it with her eyes closed. My noble navigator is enjoying a few more minutes of beauty rest while I crack into my second Redbull (woot! let's make this RV fly). Making good time as we cross into MN and hit a little rain. Good news for you readers following our travel tale, the fix I had applied to the wipers has yet to be fully operationally tested. I find as long as the wipers don't go into high speed they seem to operate per the original design rather than the new improved wiper all-the-time-always mode. So slow speed works for me, preferring to leave my fixes untested, thus not requiring adjustment before I have had breakfast.

Walnut Grove here we come. Dawn strikes like the sun coming up over the horizon (damn personal metaphor engine has not kicked in yet folks, bear with me). Take that road over there, now turn right in 2 miles. My navigator fires off instructions while telling the youngest about the Ingalls crew. My take away on her take away, they are all dead and had horses which they had to get rid of before they died. Don't ask, some days her logic eludes me but I know she is a girl so I must be wrong and she right - at least that's how it works with women so we'll go with that.

I knew something was different when the instruction set began to be peppered with streets and roads rather than highways. Take road 930 for 2 miles then turn on 8th street, etc. Basically we are winding our way through mile long blocks of corn in a zig-zag pattern to get to where we are going. No worry up until we find the bridge out sign. Fiddlesticks (family blog here folks) we are going to have to detour. No problem, we have technology. I know of at least 2 dedicated GPS devices, 2 GPS enabled phones and 3 laptops with wireless access all within arms reach of my crack navigator. We pause and she sets to it. Now if you ever want to bug Jen you will just move too slow around her and what she found was that in the part of the country where we were, things don't move quickly. Not hating on the mid-west, I've lived there and love it, but when the GPS phone can't download the maps quickly enough to scroll to find a new route, you might understand how that could be frustrating. So we wait and eventually find the means to reroute to arrive at our target museum. Nice stop, I liked the
sod house the best. Jack sadly did not enjoy it. We had let him sleep in for the whole morning while we drove so he woke up only a bit before we arrived had his meds and just was not on his normal game. I had Jen sneak us out the back gate and he and I went to test the tan bark at the local park. It just wasn't doing it for him. We threw in the proverbial towel and he and I went back to the RV to sit in the AC. It seems to do the trick and he was shortly back to his normal self. Katie and Jen got back a little while later and Katie and I hit the park for our daily park visit. Sometimes Katie, like any good four year old, has trouble leaving a park but I have found a trick. Thunder. She's not scared of it, but it does give you a logic basis for convincing someone that it's time to go.

From Walnut Grove, MN we set a course to Mitchell, SD, home of the Corn Palace. Now when my parents took me and my sisters across the U.S. as kids, the corn palace did leave an impression. I mean it's a freakin' palace-o-corn. OK, as a grownup it's really a basketball stadium which they have covered the outside of with a corn mural. Still cool and we had a fun short visit.

We made it to our stop for the evening in Kennebec, SD where we settled in for a good night's sleep prior to the next day's assault on the Badlands and Mount Rushmore. More to come.

Friday, August 13, 2010

Mosquitoes, Sunburns and Water

We are always really careful to sunblock our kids. I've always figured that if we can get them to 18, and they still love their bodies and they haven't had any major sunburns, then the rest of their life is not my problem. Well, that was my theory.

Jack is currently covered in mosquito bites. We did spray him all over, I swear I did, but even with bug spray, this trip, and in particular in Cedar Falls where we stayed two nights ago, has been filled with mosquitoes. Shawn and I found ourselves continuously smacking blood-filled creatures as we sat outside and watched the kids play on the playground. Katie kept swatting at the ones near her ears and the nape of her little baby neck. The kids were so happy to be playing in the twilight, that we stayed outside longer than e normally would have. When we got inside the RV to survey the damage to our skin, I was shocked by how many more bites were surfacing on my boy, and it dawned on me that we need to be even more diligent with Jack and anything that causes pain or discomfort.

While some children with autism need to change their clothes the minute they get wet, and others are desperate to get away from the tags on their clothing, Jack seems to have one of the highest pain tolerances in the history of man, or maybe he doesn't, but because he can't express his pain, or needs clearly, we have to guess a lot. Three inch mail in his foot? All we got from him was one sharp breath, and an awkward walk. Cold little toes while playing the snow? We'll never know. In addition to the autism, Jack has cerebral palsy ataxia, so his coordination probably precludes his ability to smack a mosquito in the right place at the right time. He just can't make up the difference between the spray and the most determined bugs.

It's also been hot. Actually, it's been record breaking, nearly not-compatible-with-life hot, so offering Jack enough to drink can get tricky. Luckily he has a very demanding sister, so we're able to use her needs as an additional gauge of Jack's needs. For those of you traveling and summering without a 4 year old demando-machine, it might be important to create some sort of chart, or alarm system to remember to check all of those pieces which keep our kids healthy. Sometimes the only indicator we have that Jack is physically uncomfortable is "bad" behavior. Acting out on a walk, could be my non-verbal boy's way of telling us he has a blister on his foot, or he's thirsty, or he's hungry.

At home we have the sunscreen in the bookcase by the back door. Before a kid goes outside for the first time each sunny day, they get sprayed down. We have now put the sunscreen and the bug spray in the little cabinet by the door of the RV. Routines. We love 'em don't we?

Thursday, August 12, 2010


This is turning into somewhat of a disaster blog. But then again, disaster makes for the best comedy and creative writing. Raise hands anyone who has read a story of the Lusitania that went along the lines - boat left dock...floated along...we landed and departed. Nope, disaster is a better story but I digress.

So we reworked our feeble pre-planned itinerary to head through Moline IL. Childhood home of Corky - mother of Jen and all around great mother in law (give me a break, Christmas is just around the corner). We had two items on our Moline agenda, Loose Meat Sandwiches at Maid-Rite (and yes for those of you wondering, I too giggle any time I say loose meat sandwich) and ice cream at Whitey's. Both were great, per the recommendation of previously mentioned outstanding mother in law (I have birthdays too you know) I also had a deep fried pork sandwich which was larger than my youngest child's head. Stuffed to the gills with meaty goodness we paused between dining and ice cream for some serious park play. Mind you, it's showing over 100 on the thermometer and the heat index resides somewhere north of there - for the sake of argument let's call it unfreakinbelivably hot. So I after dropping several pounds in water weight we get our ice cream and head back to the RV. Leaving Moline, the plan is to head up through Iowa on our way to South Dakota and Rushmore in a couple days.

We made good progress with the AC on high and the thermometer reading between 93 and 102. Before I continue it probably bears mentioning that the only real issues my parents and owners of the RV had while driving out from west to east was an intermittent issue with the RV just stopping. Sounds bad I know, and not something they were able to fix on the east prior to turning over the keys to us. Oh well, press on regardless I say. So this issue seemed to only occur when it was really hot out and the best guess was the main computer was overheating. Guess's as mentioned, unfreakinbelievably hot and somewhere in the middle of Iowa between Cedar Rapids and Waterloo we hit our first hiccup in RV forward progress.

At first, no real big deal. Heading up a hill I realize we no longer are maintaining the forward progression that my foot is encouraging. My diagnostic skills kick into high gear. Temp seems ok, oil pressure, check, wife...not so much. Houston we have a problem. After turning off the AC and a couple seconds of head scratching, things return to normal and we are not run over by the semi truck bearing down on us. OK, that was interesting. Lacking in any real diagnostic capabilities at 65 mph we continue with a new sense of heightened awareness to the various noises a 20K lbs vehicle makes while running down the road.

Several mile later, you guessed it, it happens again. This time I am more determined to diagnose if it is engine or transmission. My sloth like reflects kick into high gear and I quickly determine that either through some of my switch flipping or gear changing the engine is no longer running. Sweet Baby Jesus in a tiny canoe we're coasting! First slightly up and then slightly down, then up hill again.

Now for those of you who have not yet had the pleasure of playing soap box racer with a 20K lb vehicle let me describe the experience for you. First, you must try to restart it while barreling down the highway after flipping on those hazard lights you really hope are working right about now. Nada - Zip - Zilch, that didn't work. So you note you have a nice wide shoulder and the next exit is in sight - yet somewhat, no really actually uphill from your current location. Next you will note that the steering has become - how to describe..."somewhat heavy". You see apparently power steering was indeed invented for vehicles for whom their steering axle supports not just my own ample girth, but things like refrigerators, microwaves and let's not forget a couch. So yes, somewhat heavy would be accurate. Brakes? Yep still got some. Good news, coasting needs little braking effort. So we now have the beauty of coasting down the side of a rural highway somewhere in central Iowa.

To tell the truth, I would have bet against us making that next exit. But Sir Isaac Newton would have B-slapped me for that one. We were one giant object in motion and in motion we stayed, coasting all the way up off the highway and off the edge of the off ramp. I quickly tried to restart the engine (sloth like reflexes remember?) and with luck it fires. It was at this moment, as I pulled away to move further off the ramp I noticed the state trooper who was riding behind me. As I pulled away I saw him raise his arms in that universal gesture denoting, WTF. We pulled several yards up the off ramp to a wider spot and decided, indeed, this was the perfect spot to stop for a bite to eat. Actually it was my youngest who decided this for us by declaring she would in fact perish at that very moment without some form of sustenance. [editors note: She actually says "This is important. I might expire."] We flipped on the generator and AC and I quickly heated some hot dogs - the requested sustenance of the youngest clan member. Of course the minute the dogs were done, no one wanted to eat them. Being over 100 degrees and humid does things to your metabolic processes, namely makes you want to gain your sustenance via intravenous form factors. Lacking a round of chilled saline solutions, ice pops seemed to be the next best thing. None of those fancy Otter pops for us, these were the best in food colored and artificial flavors water my hard earned dollars could buy. I think Katie downed at least 3, Jack 2 and even mommy and daddy got into the act. Mine was blue and both my wife and daughter informed me I was eating it wrong. Despite my ice pop ineptitude, icy dinner was better than no dinner (those things are nutritious, right?) and everyone felt a little better for their frozen colored water intake.

Several minutes and a couple of shirt changes later we are set to try it again. Everything restarts and we are off in a flash - if a flash is somehow slow, like perhaps a tortoise or turtle names Flash, you know the one. Everything seems to be operational, but we decide that quitting (I mean discretion, of course) is the better part of valor and we would look for some place to spend the nice. Apparently north central Iowa is not chock a block with RV campgrounds with full pull through access and pools (last being youngest child request) so we find and settle on a local park campground and the last pull through site, right next to the lazy river. After settling in for the night which involves pleading for the boy to go to sleep and reading 3 stories for the kids, I decide to check my phone to see what the weather has in store for us. I have the Weatherbug app on my phone and I recommend it, especially for hopefully needless fear mongering. You see dear reader we have set ourselves down in the middle of a flood watch zone on the banks of a lazy river. After many minutes of web searching and Google mapping, Jen and I have a plan. Wake up around 3-4 am to get out of here before the rain hits. Tune in next time to see if we have to swim for it, or if weatherbug was just full of it and we should have listened to bedbug instead (shout out to @bedbug1038).

The Great Peperoncini Explosion of 2010

While not of the magnitude of the Port Chicago Disaster or the Halifax Explosion, in its own way this will go down within the annuals of RV history. Just yesterday, after driving for many hundreds of miles, I ended my day looking forward to a nice cold beer. Now for those of you not familiar with boating or RV travel, items may shift during travel, so you should be very cautious when opening the overhead, or any bins for that matter. It is with this sense of caution I cracked open the fridge trying to grab a cold one and begin my evening. At the slightest crack, the door jumped towards me almost knocking me down with it's 6.25 pound heft (ok not really). At that exact moment, I caught the glimpse of what can only be described as the green jar of doom as it arched ever so gracefully past my outstretched hand and headed towards the floor. For those of you not familiar with the green jar of doom it's a normal sized jar of peperoncini a delightful sandwich addition which I so lovingly purchased at Walmart for my wife who has the occasional hankering for these tangy peppers on her sandwiches.

So this jar of doom, which for Walmart was fairly normal sized, but when placed on an RV becomes beyond gargantuan (everything does, myself included) is heading down, down, down, like a briny jar of condiments (humble apologies to the great Johnny Cash). As it reaches the lowest edge of the fridge the fates intervene to ensure that the precise edge of the jar would hit the correct firmness of surface to ensure absolute and complete annihilation of the jar and it's contents. Now if you know my family you know a few good jars have died in the daily battle for sustenance. This particular one took an approach which I must say, while shocking, deserves kudos for ensuring maximum destruction. Oma and Papa (owners of said RV should stop reading now).

I was immediately faced with 2 main issues. First, a pile of pickled peppers (yes,  I was waiting all day to write that so Pfffttt) combined with semi-microscopic shards of glass and second, a virtual river of unnaturally green. flavorful, fluid flowing down the linoleum hill towards the carpeted lowlands. Before I continue you dear reader should know one important fact. My son Jack, awesome kid that he is, loves it when people clean the floor. Sweeping, vacuuming or mopping up no matter, he wants to be right in the middle of it sitting in the pile of debris laughing. Normally this is somewhat endearing. In this case of glass shards mixed with briny peppers - not so much. So I am fending off Jack with one hand, scooping peppers and glass with the other, while trying to block the briny creek with my foot, all the while yelling for Jen to throw me the paper towels.

A quick replacement sponge for briny creek dam - the size 16 initial design had a major engineering flaw in not being able to block fluids - and we had the second issue under control. The first - the big pile o pepper glass - still sat waiting for me to thrust my meat paw into it's midst and pluck its delicious yet now all too extra crunchy mass from its resting place to be deposited into the trash. With a sad resolve I carried on removing what was once spicy condiment but now just a tragic slipping hazard. Jen arrived with reinforcements so I could go from zone defense to man to man making sure Jack stayed back. Jen jumped into the middle of operation pepper detox and we slowly gained control of the situation. Katie got involved, providing the early warning system of any time Jack began heading back toward the mess - for I was now one hand down (beer holder ya know).

Frankly in retrospect, pouring pickled peppers on the floor may have been something we should have just tried without the breakage of glass. It sure does smell better than my family after several days of 95 degree heat. To be fair, we just washed 'dem kids as the heat combined with the hours of play in the sandy playground made for a piquant bouquet to say the least.

The moral of our story. Any time you place a pack of picked peppers, a perfunctory placement may promote pausing in your progress as you pick pepper from places you prefer peppers not to perch.

Wednesday, August 11, 2010


So we've hit at least 2-3 major rain storms as we cross from New York, through Pennsylvania, Ohio and now Indiana. On the way to upstate New York we found an issue with the RV windshield wipers. Once started they don't want to stop. High speed = great, low speed = over-achiever, representing all intermittent as well as what had been labeled off. So like it or not, once started you got wipers all the time always leaving you just to select from high and low speed. While I appreciate that sometimes fewer choices in life are better, in this case not being able to turn them off was inconvenient to say the least. Rain it did, sometimes in torrents, limiting visibility to a few feet at best. But contrary to the seemingly superior knowledge of the RV brain, it did in fact stop raining at times raising my desire to stop the wipers.

Now as mentioned, we discovered these issues in New York, but it was not until Ohio where the problem became rather pressing. I had managed to reset the system at least once by pulling the fuse. For a fun time try stuffing a 6'4" man of - how to say - "fluffy" stature under the dashboard of any vehicle. Not that I haven't been there before, but I am glad my wife did not take the opportunity to snap photos. I did gather one peanut gallery comment from my 4 year old - "nice butt" she exclaimed, mid way through a dash dive. So I am in the parking lot of a somewhat run down motel in the midst of the great state of Ohio and my previous fuse resetting did not have the desired outcome of an earlier attempt. I could now choose wipers or no wipers with no chance of turning them on while I drove. Since the rain had stopped falling, I chose no wipers.

Now if it was just me traveling, I might have been more creative in my problem solving - string tied to wipers for manually operation or perhaps swim goggles and head out window for that dog in rainstorm look. Since my whole family operation is traveling with me, I decided a better fix was in order. So, Jen and I begin plotting the rectification of our predicament. Now lucky for us as semi-pro traveling nerds we come fully equipped with 3 laptops and at least 3 devices able to connect wirelessly throughout most of our fair country. This means Google can be your friend on the road as well as at home. RV manufacturers web site gives us options a couple hundred miles away in the wrong direction so strike one. Now, based on my years spent in the Midwestern trenches in college I happen to know that as we get roughly 1/2 way through the northern part of the state of Indiana, we'll arrive upon Elkhart Indiana. For those of you not in the know, Elkhart Indiana is known as the "RV capital of the world". Not only are many major RV manufacturers located there, but also the RV and Motorhome hall of fame. Now, crazy enough (or not crazy for folks who know me), this was something I actually knew. I wanted to go to the RV/MH hall of fame but the opportunity had never presented itself - nor would it now. A quick GPS search put us almost exactly two hours away from Elkhart. Now it being 3 pm and the repair places we had found most promising closing at 5 pm, this posed a slight problem. We can drive molto rapido and just barely make it, but if it starts raining again we are SOL. We kick it into high gear and head out but signs from above are not promising.

As I mentioned in a prior post I am not one to like to ask or accept help. It also bothers me to have to pay someone to fix something I should be able to deal with. As I hit the road, trying to make good time in our lumbering beast which can barely hit the speed limit, this weighed more and more on me. Even if by some stroke of luck we made it to the repair shop before closing, the chances of a fix without a prolonged ordering of parts and a significant extraction of walletized resources seemed a distant possibility. Then Jen in a stroke of inspired genus mentioned Walmart. The penny immediately dropped for me and I knew that not only could I work around the problem, but also, we too could become the people of Walmart.

It was simple, all that was required was to replace the current fuse with a switch which could allow me to turn on and off the wipers at my own will rather than rely on the better judgment of the RV brain. Now before you get all wound up about what a terrible idea this is, I will have you know I have practiced the fine art of releasing the smoke from automotive wiring for many years. In fact, I've dabbled in the dark arts of English auto wiring and have seen Mr. Lucas himself in the wafting tendrils curling up from what used to be the rear wiring of a dashboard. Since I am much older - notice I failed to mention much wiser - I literally did ask my wife if she knew of a fire extinguisher on board the RV. Her reply, like my understanding was, " I think so. It's white. We really should know where that is." [editors note: we have located the fire extinguisher.]

So armed with a half (more like quarter) baked plan we found our way to Walmart in Angola, Indiana. Now all I needed was a switch, some wire, let's throw in a fuse for safety and some means of replacing a fuse with this new switch contraption. As they say on one of my favorite shows, "how hard can it be?" We unpack the family and arrive in the hallowed halls of Walmart. Starting with restocking snacks and drinks, my wife attempts to sell me on 4 pounds of ham and water "product" to no avail. I gird my loins and resist, focusing on the far away auto department. Fuses are readily available, yet no fuse holders. Electrical connectors, yep got those as well as the wire and over there is a cheap switch. Yet no where to be found is any form of fuse holder - how can this be? I start to broaden my search. I am now willing to sacrifice some other form of "budget minded" electrical device for it's fuse holder but nothing, nada. Finally, the car stereo isle. Now to get that kicking base you need to pump a lot of power. Lots of power requires big fuses and at last I find what must be the only fuse holder in the 75 acre building. I get my choice of 50 amp or 80 amp ensconced in it's impenetrable plastic shield. The fuse I am replacing is all of 25 amps and my rather limited knowledge of electronics says bumping up to 50 amps may not be the smartest choice. So fuse holder in hand I trot back to the fuses to find something big enough to fit this holder yet small enough to provide some modicum of protection to the wiper circuit.

Wiring bits in hand we head to check out, only pausing to check out the girls shoes - wait! they are only $11? We have to get 3 pairs and don't forget the Jerky. We manage to find the checkout with the guaranteed longest wait as the person in front sends their husband to the parking lot to retrieve additional cash monies. Finally, freedom! We exit into the afternoon swamp-like heat to head back to the RV parked at the far reaches of the lot - enabling a get away without the need for any reversing as, if you recall we have a "lack of reversibility". Jen gets to making dinner for kids while I get to my wiring project. First part is easy, hook wires to switch and fuse. Goes smoothly due to solderless connectors and the crimping tool I have purchased. Then the tricky part, how to replace a fuse - no not a big one with easy to get to terminals, but an ATM mini fuse with tiny terminals and impossible to reach parts. Who puts the world's smallest auto fuse in a 34 foot vehicle? I press on, to modify what I have and make it work. Now comes the technical part, so some if not all of you may want to skip ahead.

that is the space Shawn crawled into.
The plan was to take a couple of those electrical connectors, you know the ones which look like capital Y's and trim off one leg of each to create something which could plug into where each leg of an auto fuse would normally go. I know some of you more savvy readers will note that standard electrical spade connectors seem fairly close to this particular application but you'll have to trust me they are too big for a mini fuse slot. So time to make my own. Pair of electrician pliers, check. OK when those are a little too big, how about the branch pruners over there in the tool box. Man, my dad has an odd assortment of tools on this RV. A little trim there and a little twist here. Finally, apply liberal amounts of tape and this darn thing might just work. A quick final check to make sure I don't catch anything on fire or fire any circuits and we are ready for testing. After a brief yoga session to limber my aging body up to be inserted under the dash, we are off to the races. It looks wait, it is actually fitting! Now to test and yes indeed it is able to shut down those infernal yet necessary wipers at my choosing. Freedom! Now wipe on...wipe off...breathe in through the nose, out the mouth.

So far so good. It seems to work in lab type testing. We have not yet given it the true rain based workout it truly deserves. As Jen said, it will now not rain for the entire rest of the trip. So for the about to begin several month drought across all midwestern and western states, yes you can blame me and my adaptation of the RV's wiper system.

Tuesday, August 10, 2010


Arguably day 3 of our big RV journey and we are currently averaging 2 crisis per day (ok, just under that, but I am rounding). The first, no big deal. We are dragging, I should say towing a car behind the RV. Part way through the first day we figured out that we ran the battery on the car down to nothing. Minor hitch in the hitching meant a small power drain turns into a dead car. Figured this out in a gas station part way from Harrisburg PA to Syracuse NY. My wife, good egg her, talks the gas station attendant into a jump start with her Chevy truck and we are back on the road this time with car following RV to allow for battery recharging. All's well and all and we ended up having a fantastic time with my cousin and his family - likely more on that later. Not to leave out my Aunt Marilyn - who's home we made an all too brief stop at but again - more on that later. On to the stuck...

After our brief stop in Lancaster NY home of my Aunt Marilyn and childhood home of my mother and our family Oma, we decided that the only thing really to do when visiting upstate NY is to make the run for the falls - Niagara Falls that is. My friend Sushila had just been there and I had been as a kid, but my wife and of course the rest of my small clan had never been and it is an impressive site. So we're off to Niagara after dropping off my folks the night before so they can fly back home. A few morning hours of rearranging and a requisite stop to the playground and we're off. Niagara is not far from the Lancaster/Buffalo area where we spent the night. I expected a quick in - check out the falls and out again heading west - should have known how wrong I would be.

So the title here is Stuck and that is exactly what we became - somewhere on the road to the Falls. Following the highway signs we turned down the drive toward the parking area only to be faced with an c-class RV with it's hazards on and a sign "12'-0" Clearance". The only sign prior this that was - "No Commercial Traffic", and we're not commercial and plenty of tour buses where headed down the same road. Now the exact vertical dimensions of the RV we are traveling in are somewhat of a mystery, I know we cleared a 12'6" bridge already but I am damn near certain that 12'0" will take the top off this thing. So, we pull over in the merge lane and sit. In front of us is another, smaller RV. The folks in front of us are much shorter and from our vantage look to have plenty of clearance. When the lady of the RV comes to our door we tell her so, she agrees, they risk it and make it through. Now on top of my vertical limitations, which being over 6' tall, is nothing new to my life, we have the minor challenge of lack of reversibility - something foreign to my world. When towing a vehicle 4 wheels on the ground you cannot reverse. The physics of this I used to know, something of Ackerman's angle and what not, but for now the main point is we had a clearance too low in front, no way to back up and even if we could, no where to back up to.

Now I should mention that my wife and I do not like to ask for help. Bit of a stubborn pride thing I guess between us, but we are blessed to have friends who frequently force help upon us. But facing what appears to be insurmountable obstacle (or whatever the opposite of that is for going under stuff), we begin to run through our options. A quick call to my parents the RV owner to confirm height, a google search to confirm the confirmation and we sit, sweating in the August heat coming off what used to be the Canadian tundra but now, due to global warming must be the Canadian swamplands baking in the afternoon sun. Finally against the very nature of my being, I admit we need to call in the reinforcements. My wife Googles the number for the NY State police and shortly they are on the way. A few more pleasure filled minutes of waiting while trying to keep both autistic son #1 and "normal" daughter #2 quiet and in their seats and the troops arrive.

Now in NY apparently 12'0" is somewhat relative. After a quick crack about knowing we were from California, the trooper mentioned this happens all the time and they could just block traffic so we can proceed slowly in the left lane - "should be plenty of room" - "many others have made it" - "you don't have anything crazy up there do you?". So a plan formulated, we begin our nerve wracking slow crawl under the overpass. Low and behold, we make it with no expensive crunches or sudden stops. Pulling off at the next exit seemed prudent to gather wits and of course have some lunch so we did so in a rather run down part of town, but one which contained an eighteen hundred era cannon next to a nice place to park.

We survived that and went on to even survive navigating the streets of Niagara (ones apparently not set up for very big RVs), to have a great time seeing the Falls. I think both Katie and Jack were impressed. Jack likely with the large amount of water and Katie with the seagulls of all things. So how is this the best story for my first big post of this blog? Well as I see it, it was a lot like traveling (or just living) with a kid with autism. You sometime have challenges which seem insurmountable. If you are me, you'll try to just face it yourself but in the end you frequently need help from experts who either know more or have access you do not. In the end you find a way to muddle through it and not only does life go on, but you find it can be fun and while not always relaxing, at least it's never boring.

It's a Machine

There is an aspect of this trip that I didn't realize would have such an impact on our family...that giant RV, and the car it tows? They are machines. Big machines with thousands of components.

Even after hearing about all of the parts that needed to be tended to, and even replaced by my in-laws on the way out (like the window shade, the water line, and the tires) I didn't really plan on anything going wrong. And so far, we've only had to re-seat one fuse to get the windshield wipers to come to a stop, but I can't help but wonder how many other quirky little things will need to be duct taped. We have a roll stored every three feet.

We hit pouring rain yesterday: but we landed safely and were able to visit with Shawn's Aunt and daughter, and her son who we haven't seen in about 14 years. He was Katie's age when we last saw him, and Shawn and I weren't even married.

When the RV is moving, Jack is fine. Katie gets a bit bored, but she was able to take a nice nap lying, buckled in across the couch.  When the RV stops Jack has been a little anxious. He wants to play outside, which is completely reasonable, but as I predicted, one of the hardest parts about this trip. If you have a "runner", RV parks can be a bit scary. There are lots of cars, of course, and often little ponds, or if the park is well-placed, it might back  up to woods, or a desert, or an ocean cliff. Keeping Jack safe is always a challenge, keeping him happy and safe even more so.