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

[editor's note: I was supposed to post this nearly a month ago...my 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.

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.

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."

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.

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.

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.