When autism parents kill–it has to do with hope

autism-1As a parent of twins with autism, I know what it’s like to feel desperate and alone. I know how it feels to have doors close and be left with no one to help carry the load. Professionals go home to their families, most don’t have any idea what it’s like to live with the turmoil. They get to sleep through the night without worrying if their child will harm themselves or wander off.

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Maybe you’re reading this and you have a child with autism. Like me, you probably think you’d never entertain the thought of murdering your child, no matter how desperate your feel. But we have to remember that our experience with autism isn’t another parent’s experience.

Don’t get me wrong. I’m not condoning murder in any way shape or form. I think I’m trying to understand the emotions that drive someone to do such a thing.

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And I do get it. I do. When you are screaming for help and no one comes, you feel backed into a dark corner of no hope. I believe it’s loss of hope that causes parents to kill their disabled children. At least, I think that’s what happened in the case of Dorothy Spourdalakis who murdered her severely autistic son, Alex Spourdalakis, age 14, last year. (You can read the story here.  It’s compelling. Sad. And too often a common story regarding severely autistic children.)

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But in the case of Gigi Jordan, I’m not so sure. In that case it appears it was a selfish act. Or was it? Could it be true that she killed her son in order to protect him from an abusive father? It certainly can’t be true that she couldn’t obtain services for the child. She’s a millionaire. If she couldn’t obtain services, then who can?

Cases like this are just one reason I was prompted to write a book about autism (My book, Autism: Practical Help and Spiritual Hope for Parents, will be available in April 2015). Parents need to know there is definitely hope in this journey. Hope doesn’t make the road easier, but it makes it bearable.

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Autism isn’t who my children are. It’s a name of a disability that causes significant challenges in socialization, speech and behavior. All people with disabilities are precious. planned for and valuable to God. As much as I love my children, I know that God loves them even more, and He has a plan and purpose for their life. I sincerely believe that if we pray and ask God to send us help to cope, and what services to access, He open the doors. At least, that’s what He’s always done for me.

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As I wrote in my book:

“With God all things are possible” Matthew 19:26. I clung to that scripture and believed it the entire time
my twins were growing up and I continue to hold on to it today.  Things I thought they may never do, they’ve done. More than I ever imagined.

God’s Word tells us that we can’t begin to imagine what He  has in store for us (1 Corinthians 2:9). I can testify to this.

I will admit, when I see children suffering, I have a lot of questions for God. This is when I lean on the faith that God knows what He’s doing and He is up to something good, whether we see it right now or not.

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As a Court Appointed Special Advocate (CASA), I see children suffer more than I want to. Life is hard and I certainly don’t want to minimize anyone’s pain. I know what it’s like to feel alone and hopeless. This is why it’s important that Christians reach out to hurting families. If they reject our offers of help, then at least we’ve tried. Without the hope of Christ, what hope is there, really?

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All human life is sacred because we are created in the Image of God. Murder is never the answer to the frustrations of parenting a child on the autism spectrum or a child with any kind of disability. Yes, it’s difficult. But it’s do-able. More than that, it’s the most rewarding thing I’ve ever done. The struggle has been worth the benefits. My sons love me with the purest form of unconditional love I’ve ever known besides Jesus’ love. They are truly God’s gifts to me.

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The following video was prepared for Sanctity of Life Sunday which is in January each year. If you’d like to be a voice for those who can’t speak for themselves, you can find information here: BeAVoice.net.

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Autism musings: control freaks

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As autism parents, we may find ourselves seeking to control other things around us because we can’t control autism.

I’m guilty of it myself.

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The incident that occurred recently with the young man with autism and the fake ice bucket challenge doesn’t help things.

Sometimes, because of the fear autism brings to our door, and the lack of control we have to change it for our kids, we may find ourselves trying to control other areas of our lives.

fearFor myself, I cope by being a workahaolic. I admit it. I’m happiest when I’m deep into my work as a pastor’s wife, writer, substitute teacher and full-time student (I’m pursuing a special ed. degree.) If I’m busy I don’t have to face the incessant worries of what my twins’ future may hold.

managing fearI need to remember that fear is a liar. Worrying about their future, or whether or not someone will talk them into doing something that will hurt them, is fearing something in my imagination. As a writer, I’m extremely imaginative. You have no idea the things my brain can dream up!  Thankfully, I’m not alone. Thankfully, I can tap into God’s peace when I’m afraid.

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Corrie Ten Boom, holocaust survivor, wrote, “If God sends us on strong paths, we are provided strong shoes.” Sometimes it seems that some people are given more hardship than others. But I have no doubt that God will equip us for these difficult situations if we ask Him to.

fear-1_thumbBut do we remember to ask? And when we do ask, and He provides us with an answer that isn’t what we think it should be, do we turn that help away? Are we too proud? Too embarrassed?

I’ve had to give up a lot of control in my life in order to get the help I need. I’ve had to let go of being afraid of what people think, for one. The woman who comes into my home every day after school to help me with the twins, sees my house at its worst sometimes. She also attends our church. I have had to give up the fear of her telling someone what she sees.

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“Did you know the pastor and his wife didn’t make their bed today? And there were dirty dishes in the sink? And the kitty littler box was full and she’s always behind on laundry? And they didn’t have supper until 8:00 PM?”

I run that risk because if I want to accomplish the dreams in my heart, I’ve got to be able to let someone help me. It’s scary and uncomfortable. But it’s not as bad as regret. I don’t want to lie on my death bed and regret I didn’t try to pursue the dreams God placed in my heart.

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Psalm 34

I know a woman who has to control every single little thing her in her life and the lives of others around her. When she isn’t able to, she gets extremely upset. She has a big heart, but she has no idea how much pain she is in or how offensive she is to others. There’s something inside of her that feels out of control. Whether it’s pain from her past, a bad memory, or some other fear, something keeps her hand in every pie. I feel sad for her because it’s also not in her nature to accept advice or direction from anyone else. That would mean giving up some control, wouldn’t it?

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If you struggle with control, I encourage you to give up one thing this week that you obsess on and have a difficult time letting go of. Maybe it’s how the dishwasher is loaded or how laundry is done. Maybe it’s a pet peeve. Letting go and letting God is liberating and freeing. Jesus came to make us free. Give Him what it is His in the first place and give peace a chance.

What will I give up this week? I’m going to give up an extra hour of study time and work very hard to be in the moment with my family.  I’ll let you know how it goes!

Share with me below what it is you will let go of. I’d love to celebrate with you!

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Strong girls aren’t mean girls II

Stronggirlslogo2Yesterday I wrote an article for my column about a group of teens who poured bodily fluids on an autistic classmate by tricking him into thinking they were doing the ALS ice bucket challenge. They poured the vile fluid on him from the roof of his garage while recording and posting it to Instagram.

autism-1I can’t watch the video without crying. As a Mom with teen boys with autism, I can’t imagine someone doing that to my sons. I have to wonder — where was the voice of reason in this group of kids? Did no one stop to think about how it would make their autistic peer feel?

 

If just one of them had stopped or refused to participate–would it have given the others a chance to slow down and think about the consequences of their actions?

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Strong girls aren’t mean girls. Strong girls stand up for those who can’t stand up for themselves. They are strong enough and have the courage enough to go against the flow, to be different, to say no when their heart is telling them something is wrong.

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God’s Word reminds us of the Lord’s call to care for the defenseless. In Leviticus chapter 19, God instructs those with fields and vineyards to leave a portion of the harvest for the poor. There are many scriptures in the Bible that instruct us to help those in need: Leviticus 25:35, Deuteronomy 14:28-29, Deuteronomy 15:7-11, Isaiah 58:6-7, Psalms 41:1-3, Proverbs 11:25, 19:17, 22:9, Matthew 5:42, 6:1-4, 19:21, 25:31-46, Luke 6:38, 11:41, 12:33-34, Acts 20:35, 1 Corinthians 12:4-11, 12:27-31, 13:1-13, 2 Corinthians 9:6-7, Galatians 2:10, Ephesians 4:7-12, 1 Timothy 5:16, 6:17-19, Hebrews 13:3, 13:16, James 1:27, 2:2-9, 2:15-16, 1 John 3:17-18.

Psalm 82:3 reminds us to: “Deliver the poor and needy: rid them out of the hand of the wicked.

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A Strong Girl who is attentive to God’s voice won’t go along with the crowd. She’ll listen for that still small voice above the boisterous noise and giggles of a group of bullies. This power and strength isn’t because the girl is exceptionally strong, but because she has tapped into THE STRENGTH that the Holy Spirit provides.

The Apostle Paul, who wrote about a third of the New Testament, reminded his friends in Corinth of this supernatural strength when he wrote in his letter to them:

“And I, brethren, when I came to you, came not with excellency of speech or of wisdom, declaring unto you the testimony of God.For I determined not to know any thing among you, save Jesus Christ, and him crucified.And I was with you in weakness, and in fear, and in much trembling.And my speech and my preaching was not with enticing words of man’s wisdom, but in demonstration of the Spirit and of power” 1 Corinthians 2:1-4.

Paul was a bold guy, but even he was afraid at times. He knew that his preaching was only powerful because of God’s power. If you’re scared to stand up, be yourself, go against the flow–ask God for boldness. I guarantee He will give it to you.

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When I am in a conversation that I feel isn’t right, I pray quietly to myself and listen for God’s voice. “Give me the right words, Lord. I don’t know what to say.” I pray this if I’m being bullied, too. (Yes, grown ups are bullied, too!) God has never failed to help me in those uncomfortable situations.

Teenage girl being bullied

Then there are times when I’m with friends and I get that icky feeling inside that what we’re talking about isn’t pleasing to God. If you’re in a situation and you feel that ickiness? It could be the Holy Spirit pricking your heart, warning you to stop before it goes too far.

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Sometimes when people, young and old, are in a crowd, they get caught up in the excitement and rowdiness of those around them. This is called mob mentality. But God has called us to go against the mob. He’s given us the power through His Holy Spirit to do so. All we have to do is listen for His voice and obey.

In summary:

  • Strong Girls aren’t mean girls.
  • Strong Girls go against the flow.
  • Strong Girls defend the defenseless.
  • Strong Girls listen for the Holy Spirit’s voice and obey it.

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Let’s hear it for special education teachers!

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Breakfast!

I’m subbing for a special education teacher this week. She’s a first year teacher and do you know what my first clue was?

The only break she has all day is 30 minutes for lunch.

So the next time someone tells me that teachers only work 6 hours a day and that they are overpaid, I want you to walk in this woman’s shoes. She is on the run from the time that first bell rings. If she’s not teaching she’s running from one class to another all over this building.

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Special education teachers are often overworked. Their hearts are big and they put the needs of kids first. Today several children have arrived hungry. One of my students is eating crackers and milk in my room right now. It’s hard to learn on an empty stomach.

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A few of the children aren’t bathed. Their hair isn’t combed. It’s heartbreaking. There has been no nurturing for these sweet kids. They live hard lives.

I love filling in for this teacher for three days but I’m worried that she’s not getting enough time to recharge. Special Ed teachers want to fix things. But we can only do so much. That frustration alone is weighty.

Battery Recharger 1Do you think public school teachers have it too easy? Have you thanked your child’s teacher today?

If you’re a homeschool mom reading this, give yourself some encouragement and take some time to be refreshed. When I was homeschooling my kids, I took one hour each day to myself. I relished that hour. I trained my children to sit on their beds and read if they didn’t want to nap. They were not to disturb me unless it was blood or fire. I’d love to have that hour today!

Even Jesus took time to himself. And last time I checked, none of us are perfect like He is. If He needed it, we do, too.

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Would you be so kind as to fill out this survey? I’d appreciate it so much! Thanks for your help in making this little ministry on the web the best it can be.

Love,

Karla

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Back to school

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I’m waxing nostalgic about the twins going back to school on Tuesday.

I resent that classes start so early in the summer. Seems to me they should take less days off during the year for teacher in-services. Why can’t they do those before the school year begins? Why cut a kid’s summer short?

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One of the reasons this is an “ugh” for me, is that I’ve finally gotten the twins into a good routine this summer. And now, we have to learn a new one.

It’s not that easy with kids with autism. Change in routine is very difficult for them and for their whole family. So now, instead of chores in the mornings, they’ll have chores and homework in the hours after school, and it’s super difficult getting them to cooperate because they’ve held it together all day at school. There’s just nothing left for them to give when they get home.

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But laundry still has to be done, and messes cleaned up and toilets scrubbed. Then there’s the hygiene. Basic stuff for regular folks. I know at the end of the day the idea of doing dishes is a struggle for me. And it’s so much more difficult for the boys.

technology-infused-classroom-cartoonWhile you’re reading this, we’re most likely at the local super center finishing up our school supply shopping. And getting new shoes. Tomorrow, the boys go to their first day back to school. And I’m sad. I enjoy having them here. I enjoy the lazy summer days and watching them help their Dad in the yard. It feels like school steals all that away.

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Which is why I enjoyed homeschooling my kids so much. I loved having them around. I loved the freedom of being able to jump in the van and go to a museum or library or the forest. But I know that the twins are attending classes they truly need now to be well-equipped to be more independent.

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It’s not about me. It’s about them and their future. And I’m just whining.

I’ll get over it. I always do. We’ll hit our stride somehow and find a new way to cope with new routines.

Peanuts_TeachersHow about you? Do you have circumstances in your life that force you to change up your routine? How do you deal with it? Let me know!

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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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