In which I don’t take a park ranger seriously and he is not amused

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We made it to Mount Rushmore. But before we went there we swung over to Sturgis. I kicked myself for not bringing my bookmarks to my book, The Pastor’s Wife Wears Biker Boots. I didn’t know I’d be going to Sturgis. I learned a lesson: take bookmarks everywhere. Everywhere. Note to self duly noted and ingrained.

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It was a great time to drive through Sturgis because the raucous activity hadn’t started yet. So many motorcycles to see, so little time! We may try to come over next year with bookmarks and books. I hope it can happen.

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We drove on to Mt. Rushmore and Mama Ellen wasn’t steady on her feet, so we needed to request a wheelchair at the information desk. This is how the conversation went:

Me: Do you have any available wheelchairs?

Ranger: Do you have a license to drive?

Me (smiling): Yes, do you have wheelchairs?

Ranger: Are you a licensed driver?

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You have to understand something. I live with a man who always answers questions with questions and loves to tease, so I thought the guy was asking me if I had a license to drive a wheelchair.

Annoyed, he asked me again, “Are you a licensed driver? You have to be a licensed driver to borrow a wheelchair.”

Finally my husband stepped up and said, “You need a driver’s license?”

The guy nodded and Mr. Himself handed him his license.

At which point I became annoyed and irritated. Why didn’t the ranger just ask me for my driver’s license in the first place?

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I felt a little miffed at how he talked down to me. And it put me in one of those feminist moods. You know, the kind where you think, “He wouldn’t have talked to me that way it I were a man.” Or, “If I were an attractive bombshell, he would have been more direct and done all he could to help me.”

A woman knows when she’s being condescended to. She just knows.

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But, we did get to see the giant presidents’ heads. And got pictures before it started pouring rain. Mr. Himself got irritated with me when I didn’t want my picture taken at one point. I’d let that rude ranger put me in a mood for a bit. And then Mr. Himself got in a mood. But we got over it. Family vacations. Interpersonal communication skills. <sigh>

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Isaac and Isaiah with bust of Mt. Rushmore sculptor

Now we’re driving through Hell Canyon. We hope we’re heading the right direction to Yellowstone. Hard to tell because there’s no available 4G anywhere. You’d think with as many people travel this route there’d be something, but it’s rather desolate. It’d be a great place to live if you don’t want anything to do with modern conveniences. Don’t know that I want to live in a place called Hell Canyon, though.

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Day 2 in which timing, location and miracles are everything

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Before you delete or close this window, please know that I’m aware there’s nothing more droll than reading about other people’s vacations. But this isn’t that kind of post. I promise. I just have to tell you what God did today (Wednesday, July 30, 2014).

Since we didn’t know for sure when or if we would be making this trip, we didn’t make any hotel reservations until we got on the road. We also didn’t know that this is the same week that motorcyclists all over the United States would converge to South Dakota’s badlands for the annual Sturgis Motorcycle Rally.

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Hotel reservations that a person can reasonably afford, are difficult enough to acquire this time of year. Families visit Mount Rushmore and Yellowstone Park every summer, and getting affordable rooms for five people isn’t easy. But couple that with the Sturgis event, and it’s nearly impossible.

But Praise God, we did find some rooms that allowed a roll-away bed! You have no idea how much of a miracle that is!

i_90Today we drove for twelve hours and if you know anything about I-90 going west through Minnesota and South Dakota, you know how desolate it is. There are very few towns along the route and I couldn’t get internet access most of the way. There weren’t a lot of places to stop for gas and nowhere that we could see to go when your tires shred and fall apart while going 70 mph.

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Not our tire but same thing happened to ours.

God is so amazing! We heard the thu-thunk of the tire shredding but the car stayed in its lane. What is even more amazing is that we were only about five miles from a Walmart Supercenter which has a tire replacement service. And even more and more amazing–there was not one customer in front of us!

I don’t know how many Walmart Supercenter’s are along rural I-90 , but I venture to guess our tire shredded near one of the only ones. Seriously.

Isaiah, my son with autism, told me that when he heard the tire shred he felt God telling him not to worry, that the angels were holding the tire together and the car on the road. Pretty cool.

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My grandmother had a copy of this painting of a guardian angel protecting children hanging on her living room wall. I always loved it.

Everyone is having a good time so far. Mama Ellen (who has Alzheimer’s) has kept me in stitches with her funny questions and comments. The twins have been amazingly good and patient. There wasn’t much to see along I-90 except beautiful prairie, corn and wheat. But there was a junk art exhibit near Montrose, South Dakota. Pretty weird stuff.

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Now we’re tucked into our beds ready to close our eyes and drift off to dreamland. I’m going to snuggle under my blankets content with a peace that God knows what He’s doing, and He’s never surprised. I can depend on Him to take care of me. No matter what happens.

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Family vacation–an exercise in character building

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We were supposed to leave yesterday. Finally, about an hour ago, we squeezed ourselves into the car. All five of us. We’re going to travel 5100 miles.

Together.

In a car.

5100 miles.

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Now, mind you, we all have special needs. Two have autism, one has Alzheimer’s, one has ADD (my husband) and one is riddled with a genetic propensity toward anxiety. (I come from a long line of nervous people.)

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My husband has ADD. I don’t know if you’ve ever ridden in a car driven by someone with ADD.Straight lines are an abstraction. I don’t know how we don’t get pulled over for suspicion of intoxication. Why on earth would God pair a woman with anxiety issues with an ADD man? The only explanation I can think of is that He thinks it’s funny. Especially when my spouse hits those rumble strips on the side of the road when I’m in deep thought/sleep.

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Or when I look up from reading and we’re 2.5 inches from the back of a semi trailer.

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Not to mention the stuff he listens to on the radio.

Oh, Dear Heavenly Father, deliver me.

If it’s not the comedy station singing songs about racoons praising God in church, it’s barber shop quartets. I mean, I don’t mind for ten minutes or so. I love all types of music. But after eight hours I’m ready to strap myself to the top of the car. It’d be much more tolerable, I assure you.

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Mothers take vacations to rest from getting ready for vacations. I’ve done more laundry in the last week than I did all year. And I’m one of those people that has to clean the house before a trip. I mean, what if I die and don’t come back? I can’t leave this earth with people thinking I’m a slob.

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And then there are the dogs and cats. Who will take care of them? Even as I type this I have a knot in my stomach and a lump in my throat thinking about how much I’m going to miss them and how much they will miss me. I’m worried about the kittens going feral and the dogs’ hearts being broken. Two weeks is a long time to be away from one another!

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I did, of course, provide for someone to come in and interact with them each day, and to care for the house. My house won’t sit empty (so if you’re planning on robbing me, don’t try it. My dogs will eat you and my house sitters are armed and dangerous). But will those people cuddle the fur kids enough? I wish I had the money for a nanny cam! That way I could see them every day and make sure they aren’t being neglected. Unfortunately my house sitters don’t know how to use skype.

They’re low-tech folks with good aim.

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I did lose it once this morning when people were arguing over which flavor of Pop Tart to put in the trunk and which to put in the backseat. (Don’t worry, the gun was locked up at the time.) And I may have raised my voice a little when people ignored me about helping with chores. (Clean the house, people! Clean the house!)

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Now we’re finally on the road and I’m posting from inside the car. A first for me. I love my phone’s hotspot capabilities! (The bill, not so much.)

I need your help. I’ll be in the car with these characters for at least six to eight days. I need to know: how do you survive family vacations?

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World Autism Awareness Day

I believe in confirmations from the Lord that I’m on the right track. And lately, with the hardships my family has experienced, I needed a little boost of confidence.

Today is Autism Awareness Day. It’s a very special day for me because I am a Mom of twin adults (age 19) with autism.

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L to R: Isaac (with Chevy) and Isaiah (with Jake)

And it’s also a special day because I received my contract from Beacon Hill Press to write my proposed book, Pie in the Sky: A message of Hope, Healing and Hallelujahs for families living with autism.

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My sell sheet book cover

You might call it a coincidence that the contract arrived TODAY, on Autism Awareness Day, but I don’t believe too much in coincidences. I’m one of those faith people. I believe that when a soul talks to God, He talks back.

I’m excited, yes, but I’m more concerned that I get this book right. That it touches lives and helps people. That it makes a difference.

If you’re a family living with autism, I’d love your input. What do you need this book to address?

If you’re a friend and know someone with autism, what questions do you have?

If you’re a church and you want to know more about how to reach families living with autism — shoot me your questions!

I am constantly amazed when I look at the world around me at the Lord’s ability to pay attention to us individually. His Presence is the most precious thing to me. And I covet your prayers that I’ll continue to seek Him and write what HE wants me to write in this book.

Thank You, God, for being so big and able, and yet so personal to order our steps and speak to us where we are.

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God’s Unexpected Blessings

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A week ago today I was feeling rather low. I even blogged about it I was feeling so bad.

Then, one blessing after another flowed into my life in unexpected ways.

I got good news.

A check came in the mail.

And by sheer Providence, I got to meet Temple Grandin and interview her face to face for a full 45 minutes!

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Temple talking to me!

45 minutes, people! 45 minutes! ME!

Why? Because the other media failed to show up. So there I was, at the media meet and greet and it was just Temple and me, shootin’ the breeze about everything from autism to chickens to Australia.

I will be writing a series of articles on Temple and will share them with you as I get them published. There is a preliminary article here: Exclusive: Temple Grandin named Manchester University Innovator of the Year.

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I forgot to tell her to smile!

If you read last week’s post, you know that I had a talk with the Lord and He assured me I could trust Him with my life and I agreed to put it in His hands. (Why I keep taking it back as if I have a better idea than God remains a mystery. I’m fallible. And badly in need of a merciful God.)

I guess more than I agreed to trust Him was that I agreed to stop fretting. I had to make myself rest in His assurance that He was in control and everything was going to be fine.

And then this happened.

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Publicity photo

I’m so glad I can trust Him even when it doesn’t make sense.

This trust thing isn’t just for me. It’s for anyone who’s willing to rest in Him. Give it a try. You’ll be amazed at the things God has in store for you.

Just. Rest.

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Autism and First Place Chili

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Isaiah (L) and Isaac (R) Chili Champs three years running!

We’ve had a chili-cook-off tradition at our church for the past seven years or so. For the past three years my twin sons with autism have won first place!

The first year, they used my recipe and I guided them through the process. The second year their Dad’s recipe was used and Dad entered with them.

Last night they entered by themselves with Mom’s recipe and won again!

Isaac did all the veggie chopping himself with our Vidalia Onion Chopper.

VidaliaChopWizard3I don’t know what the secret to our chili is. I think it’s a pretty basic recipe. We make it just hot enough to sting a little, but not enough to make people run for the water fountain. We do live in the north. I think our chili is milder than those in Texas. However, I do love the tickle if cayenne pepper in my nose, don’t you?

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My secret ingredient? I think it might be butter. My secret recipe sautes the onions and peppers in butter. I also use a very high quality beef grown locally and humanely.

What’s the secret ingredient in your chili?

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Autism + blizzard + flu = one tired Mama!

So, I now have two sick autie men (my kids with autism are 19 now), and there’s a blizzard outside.

What could be more fun, right?

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I’m supposed to be working on two overdue manuscripts, but instead I’m feeding chicken soup to the two curled up together watching Downton Abbey. That’s not all bad, I suppose.

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But books and stories don’t write themselves. And while everyone else is snoozing and snuggling, and watching TV, I’m off to the office to feel sorry for myself that I can’t snooze and snuggle, too.

Oh, poor me. First World problems.

I’ll just remind myself I’m not out digging ditches in that blizzard. That should do it.

What do you do to motivate yourself to keep writing on lazy-feeling days?

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The perfect conditions for treating a patient with autism

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Lutheran Hospital Fort Wayne, Indiana

I have long wanted to write a book for the medical community about how to deal with patients with autism. Our normal experiences with medical personnel as the twins were growing up, were less than admirable. Autism wasn’t known about as much as it is now. And I’m happy to report, after our experiences last Wednesday, that I have come up with the perfect formula for successfully treating a patient with autism.

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Isaiah and a nurse

  • Order up a huge snowstorm. If you do that, the hospital will be overstaffed and there will be a minimum amount of patients because most of them will call in and reschedule their procedure. Because we were there when hardly anyone else was, Isaiah had plenty of nurses and attention.
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A cozy nook I didn’t get to use. Oh well. Maybe next time.

  • Check into a cozy hotel. Because of the snowstorm we drove to Fort Wayne the night before so we wouldn’t be unable to get there for the procedure. Isaiah had worked himself up quite a bit, and delaying this would not have served him well. So we got to spend a “bonding” night together at a local hotel. Now, Isaiah is very familiar with staying at hotels because we travel a lot. For regular kids with autism not accustomed to travel, it would have been very stressful. It was actually stress-reducing for us because we didn’t have to rush around in the snow (we live about 45 minutes away from the hospital and the hotel was only about five minutes away).
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A lovely breakfast buffet — alas, we couldn’t partake! (Isaiah wasn’t allowed to eat.)

  • Be prepared for blood-curdling screams. Because the room where they prepped Isaiah was almost empty, his howls when they put in the I.V. only scared about 1.5 patients. I checked, and no one ran away in terror, so that’s good. Plus, he had plenty of nurses to comfort him once the I.V. went in. He was spoiled big time because they were over-staffed.
  • Let the patient take lots of pictures of surgeons and doctors. Because it was a slow snow day, the doctors were very laid back and allowed us to stay with Isaiah in the procedure room until he was asleep! That never happens, as you know. They also took time to pose for pictures. They got to know Isaiah as a person. That can’t always happen in a busy hospital.
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Isaiah with Dr. Ahmed. Isaiah becomes attached to those who are his doctors or caregivers. He wanted a picture with everyone.

  • Profusely thank all the nurses. In recovery Isaiah had six or seven nurses paying attention to him. He thanked each and every one. It was precious and he was the rock star of the day.
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Isaiah shook hands with and thanked every single nurse.

As you can see, having your offspring with autism treated well, simply takes ordering up a mega-snowstorm from the weather guy or gal. No biggie. You can handle that. After all, you’re a parent with autism — you’re accustomed to serving up miracles.

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Hallelujah! We have poop!

hallelujahHey, when you live with autism, you get excited about some strange stuff.

This week I’m jumping for joy about poop.

I’m not saying that when Isaiah woke me up first thing Friday with — “Mom! I pooped in the hat!” that it’s my favorite way to wake up.

But let me tell you, it was a long-awaited event.

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The Hat

Isaiah has been sick since October. We haven’t been able to figure out what’s going on. He’s been losing weight and his stools are very loose. He gets tired easy. The next step in pinning down a diagnosis was to get a stool sample. Which he refused to give us.

He’s eighteen. How do I force him to give me poop?

He was terrified of pooping in “the hat.” I called the nurse and asked for an alternative method. Nothing doing. It had to go in the hat and I had to scoop it out and put it in four different vials.

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Weeks later there was still no poop.

We had an intervention. We sat him down and explained to him that he MUST poop in the hat. His twin brother told him that he wanted him to go back to school with him (he is in home-bound education until we clear this up).

I don’t know how, or why, but the next morning — HE DID IT!

And I had the pleasure of, er, collecting it.

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So now we wait for news back. Hopefully it will reveal answers. Otherwise he has to have a endoscopy and if you know anything about autism, you know that it will be terrifying for him.

Here are some pics of his Grandma helping him endure another scan. He’s had three. Each time they have to put in an IV. And he’s terrified of them.

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How do you help your child with disabilities endure an illness? How do you cope?

Autism weekends

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Weekends and autism are a challenge.

Weekends mean less structure. And Saturdays usually end up with the twins fighting.

Even though they’re 18, they still fight. Developmentally they are only about 8 or 9 years old. And I have to remember that.  Add autism to the mix and it’s just not the kind of dynamic that’s by any means “normal” for them. There is no normal in autism. There is no typical. Autism is unpredictable.

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I’m trying out some apps to help us get more structure to our weekends and evenings. But being tech challenged (I’m not as bad as most but I’m no wizard) something has gone wrong with a wonderful app that was working.

Which teaches me another lesson: no matter how many bells and whistles I throw at this thing called autism, one thing will always, always be required:

zlata_contortionist_8FLEXIBILITY.

If there’s one thing autism has taught me it’s how to prepare for the unexpected. The only way to do this is to remain flexible. Have more than one plan. And execute them one after another.

Sometimes it’s easy to fall into a pity pot and feel sorry for myself. I fight it but to be honest, sometimes it just happens.

Sometimes I’d like to know what it’s like to have a clean house for more than five minutes.

Sometimes I’d like to know what it’s like to ask them to do something and have them do it without constant coaxing.

Sometimes I’d like to be able to be spontaneous and just go to the movies with my husband without making elaborate arrangements for childcare.

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But if I keep my focus on their humanity — their beautiful spirits, and realize that as hard as my days are with them, their days with me are just as hard if not harder.

I’m not the one living in the confusing world of autism.

They are.

And that’s when compassion overrides self pity and I can pull myself up and conquer another day.

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