Monday, June 25, 2007

On the inside...(Journal#76)

...all God's children are amazing!

My friend Aspiemom brought my attention to Paul Potts from England in a post she did last month. The video is of his first audition of the English version of America's Got Talent. He later went on to win the competition in early June. As Aspiemom said, watch the judges expression when they first see him.

Just as Simon and Piers' faces revealed surprise and wonderment at the end of the video, because they weren't expecting that kind of beautiful talent from somebody who looked like that, such are similar situations for our children with autism.

I will brag, that our Sam is the most incredible charmer I know. When he is on, and things seem in balance, he will give you a smile to die for. So lately, as some of his meltdowns and aggression seem to be flaring up more, it throws people off as to the person he really is. When he looks like any other 5 year old boy, and smiles so beautiful, how can one make sense of an instant change to his head ramming, screaming, and destruction of things. All this because we misunderstand what he says, needs, or wants. is here, this week, that I wish our world was just more accepting of everyones differences. Brent and I are in Iowa for a week. We are directing a high school church camp, of which we have been a part of for 11 years. It is amazing the challenges that these children bring to camp. Sexual abuse, family problems, eating disorders, dealing with recent death and illness of family and parents, the list goes on. Our kids today have so much on the inside, yet can appear to others on the outside as fine. It is only in certain situations does the hurt come out, whether it be at a night worship around the campfire or when they are spending time in their small study groups.

As we prepare for the last full day of camp with these incredible youth, it is heavy on my heart, just how much we judge people by their exterior. That if they appear typical on the outside then we don't understand when the inside feelings we have change our outward appearance.

On the inside, some may hurt.
On the inside, some may want to be their true self but for other reasons can not.
On the inside, in our hearts, is where we can keep God's love for those times when we are judged by others. So let us too remember not to judge one another but to love one another from the inside out.

A Twist of Faith
As the scribe asked Jesus what he felt was the greatest commandment, the law that should be at the top. Jesus replied, "First, love God with all your heart and soul. But most important, love your neighbor as yourself." If we really loved our neighbor as ourselves...everyone...including our children with autism would be accepted by all.

Friday, June 22, 2007

Out our own front door...(Journal#75) the neighboring suburb of Blaine, where yesterday afternoon, yet another autistic child was found dead. Five year old Kaylie Dickerson wandered out of her home without her family knowing it and wandered across the street into a pond. As the autism community in this area just mourns the loss of another autistic child who wandered away last week and died, in which area people here even volunteered in those search efforts in neighboring Wisconsin, yet the tragedy happens again. While we did not know them personally, goose bumps and heartache for the family is what I feel.

According to news reports yesterday and today, even Kaylie's family had all the necessary things in place to make sure she would not wander away, according to police.
~I am guessing that they too, like us, have a security system that also alerts you when someone is coming or going when the system is off.
~I am guessing that they too have a visual PEC system card near the door, that visually tells the child to stop before going outside and ask an adult.
~I am guessing that they too have a fenced in yard.
~I am guessing that they too have some type of indoor sound/video system to monitor their child in the house when they are not in the same room.
~I am NOT guessing, because I KNOW that we are all a part of the same local autism community, I know that our children are both 5, I know that our hearts ache for them.

Out our own front door is a lake. That has always been a concern. But geesh, in the land of 10,000 lakes, that is a little hard to avoid. Out our own front door, is a reminder that we should not let our guards down as we have a little this year. Up until this summer, anytime I am outside with Sam, I would hold him by his wrist (tightly) because he would not hold my hand. We had to always do this because he did not understand safety and would dart in to traffic and always away from us like a toddler would do. I know people thought it was ridiculous that we always had such a grip on him, but he was unlike our oldest, who understood by 2 years old what danger was. When I say we have let our guard down this summer, it is because Sam seems to understand a little better his boundaries and rules at home lately. He still goes out of the house without asking, but this summer we have been less worried about always having our security system chimes on that even alert us to which door. As of today, they are back on.

Safety is such an issue with all of our autistic children. For some it is that they are completely non-verbal and are unable to express help when they need it, for others, like Sam, is that they don't understand safety, or perhaps the way we teach it to them. We can not play "that game" parents play when they need to leave a location. You know the game...when the child refuses to go with you, and you say, "okay, we're leaving, see ya later". Sam is just fine with that, and innocently starts walking away to do whatever he wants to do next and pays us no attention. It is not in the naughty sense either, it is purely that he doesn't understand that he can not be left alone.

Out our own front our neighboring suburb, we mourn for Kaylie's family.

Out our own front door...and across the street, we have the reminder that you can never take our kiddos safety for granted.

Out our own front a world we pray will keep all of our children safe.

Out our own front door, we are reminded of just how unsafe it can be for all of our children. Sometimes, no matter how prepared we are, the unthinkable happens. Once again, we feel unsafe. But there is one place we can seek safety and peace, for we all know that God provides that for us. Kaylie is now safe and back in his arms again.

We depend on the Lord above to save us. Only he can help us, protect us like a shield.
~Psalm 33:20

Wednesday, June 20, 2007

Prayers for Benjy's family (Journal#74)

Posted June 20, 2007

Missing boy's body found in pond near home By Karen Madden
For the Wausau Daily Herald

TOWN OF SARATOGA -- Hope turned to sadness Tuesday when the body of 7-year-old Benjy Heil was found less than a quarter mile from his home.

Benjy disappeared from the home early Thursday evening, having apparently wandered away on his own. Each day since then, between 400 and 600 emergency personnel and volunteers searched for the missing boy, who had autism that impaired his ability to communicate.

A search dog discovered Benjy's body in a pond adjacent to Ten Mile Creek at about 11 a.m. Tuesday, said Lt. Dave Laude of the Wood County Sheriff's Department. The pond, which is as deep as 25 feet, had been searched repeatedly since the boy was reported missing.

The Sheriff's Department is investigating Benjy's death, although it is thought to have been accidental, Laude said. Wood County Coroner Garry Kronstedt said an autopsy has been scheduled for Thursday.

"The sympathy of our whole department goes out to Benjy's family," Sheriff Thomas Reichert said. "My thanks goes out to the extraordinary people who assisted."

The Wisconsin State Patrol, National Guard and Saint Joseph's Hospital in Marshfield were among the agencies that sent planes or helicopters to scour the area.

The Heil family reported Benjy missing at 6:38 p.m. Thursday and Wood County Red Cross Emergency Services quickly set up a command center across the road from the family's house at 14007 Highway Z.

"We can't begin to convey our emotion and gratitude at the outpouring of giving that has made it possible to serve the people serving the operation," said Pattie Kelnhofer, emergency services director.

K-9 units from local and state law enforcement agencies and dog search teams from Minnesota, Illinois and Michigan assisted with the search.


I give you this one thought to keep
I am with you still-I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle Autumn rain.
When you awaken in the morning's hush,
I am the swift, uplifting rush
of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not think of me as gone-
I am with you still-in each new dawn.
(A Native American Prayer)

Monday, June 18, 2007

Prayers for Benjy (Journal#73)

(The following is from

June 18, 3007
Missing Autistic Boy in Wood County (Wisconsin)
Emergency crews, family and friends continue to comb the woods of Southern Wood County looking for seven-year-old Benjamin Hile.

Family members say Benjamin, who is autistic, went missing shortly after seven last night when he wandered away from home on County Road Z. That’s near the Deer Trail Park Campground outside of Nekoosa.

They've been searching for him throughout the night and they won't give up until he's brought home.

"It's scary for a seven-year-old boy to be missing anywhere," said a community member.

And when a seven-year-old goes missing near a campground, that's close to water, just before dark, it's even worse.

That's why the community is rallying together to help bring the boy called "Benjy" home.
They've set up a command center here on County Road Z where more than 100 came Thursday night to help search for Benjy.

"We have multiple agencies, fire agencies, been utilizing helicopters...ground searching, we have dogs," said David Laude, a Wood County Sheriff.

And they have the hope that someone will find Benjy in Wood County.

His family says he has blonde hair and blue eyes. He is wearing a blue "Buzz Lightyear" shirt and silver shorts and is barefoot.

Benjy is autistic, but they say he will respond to the command "come here."

If you see Benjy please call the Wood County Sheriff's Department at 715-421-8700.

Dear God,
Please guide the search team,
please embrace the family,
may a safe return home be made.

Proud to have an Autistic child...(Journal#72)

Today is Autistic Pride Day, which had me all set up to write about it.

Write about it that is....until I received the Google news alert that David Kirby had an article in the Huffington Post that frustrated me.

Write about it that is...until I visited my friend Kristina's site. Her post today made me proud to know her works and her Charlie's story. It deals with a huge debate in our community, and for me sums up how I feel about David Kirby's root into the autism community (which he is apparently pulling out now).

Thanks for your words today Kristina, I can not sum it up even close to your great post today!

Saturday, June 09, 2007

He's gone.....(Journal #71)

Our Sam is gone. He is not sleeping in his bed in the room below me. He is not curled up with his bunny blankie from Aunt D, he is not laying with his hands perfectly folded under his head, he is not stomping up the steps to tell me "potty" in the middle of the night. He is gone. Okay, don't freak out. He didn't escape into the night through our security system and all. He is at church camp for the very first time. And...don't worry, he is not alone.

Our denomination has this awesome Grand Camp they offer every year. It is just a "one nighter", but grandparents bring their grandchildren. It is a way for them to get a taste of church camp very early on, and a chance for grandparents to relive theirs.

I should feel Sam is in awesome hands with Grandma, and...he is on Holy Ground. Everyone refers to our church camp as that, even though it is not named that. Brent and I have been counting down to this day, just like we did the first time Zach went. Partly for a selfish reason, because it is an important place to Brent and I. We love that place, and we have directed for years, a high school camp there for a week in July, and will do so again in a few weeks. We started doing that well before kids, and we used to dream of the day our kids would start coming to camp. Our next dream is the day Zach joins us in high school camp (which I really hope takes forever, because I don't want those years to fly by).

Sam going to Grand Camp feels a little different than it did with Zach. Zach has been the typical first born, independent and fearless most times. But Brent and I aren't sure what church camp will hold for Sam. I don't know that I will ever feel comfortable sending him to church camp alone once he gets old enough to go, unless I could go as his assistant or PCA or something.

Sam gains knowledge of this world, just like all of us, by observing and then applying. He copies and mimicks everything, even down to the way something is said. He caught an episode of "Arthur goes to camp" on PBS kids a couple weeks ago. He has seen it a thousand times, but when the countdown was on for him to go to camp, he started preparing mentally for it. This morning as we were heading out the door preparing for our trip, his sweet little voice said,

"Mom, know morneeeeen at tamp?"
"Yes Sam, there will be morning at camp."
"No mom, you know what do in morneeeeeen?
"What Sam?"
"Wait up lite dis....." (wake up like this) as he then places his hand up to his mouth like a bugle and imitates a bugle call.
In my mind I am flashing back to Arthur and thinking great, he is going to think they will do everything. Sam is notorious for scripting and memorizing episodes. While he didn't go into script, this is what came next (for those familiar with that episode).

"Mom, dirls mean" (girls are mean). On the episode the girls and the guys at camp go at it because they think they are scaring each other in their tents, but it ends up being the bullies from the other camp.

"No Sam, girls are not mean. The girls and boys were both teasing each other in Arthur. That is what you are thinking about Sam, isn't it?"

"Yaaaaaaaaaaah." Discussion ends until we are in van.

"Need a tary tory" (scary story).
"What Sam?"

Oh yah, then in the Arthur episode, they talk about the typical scary stories around the fire. I am just imaging what is going through my little boys head.

"Sam, they don't tell scary stories at church camp. That was just on the show Arthur. You sing around the fire at church camp."


Okay, so about now I am thinking, do I tell him a scary story so he has one? Then I think, duh, then he will be scared, he will play it in his head 50 times, then he will be scared at the campfire. So I try to think of a silly story, so I start telling him one. (This happens to be a real story, because it was all could think of on the spot. And...stupid me, this also happens to be the same Sesame Street book that Sam makes me read to him EVERY Monday and Wednesday while we are waiting in the waiting room for speech. He goes and gets the book from the shelf, I read, yada yada yada. ) Dang, he remembers word for word how it goes, I obviously don't, as I am fumbling words together. Look out...hear comes another wail!!!!!!!!! He was gone. Sam was gone, mad, upset. Only for 3 miles in the van.

"Sam, I spy with my little eye..."

That was all it took to bring him back. Now...if Grandma could please bring him back a little sooner too. Pleaaaaaaaaase!!!!!

Sometimes we take for granted those important people in our lives, and when they are gone, we miss them so bad our heart hurts. I know for me personally, that I take for granted all that God has blessed me with, and that sometimes the only time I seek Him, is when I want something back from God. I am soooooooooooo thankful he doesn't treat me that way. May we never forget all that we have been given.
~"For all things give thanks to God" (I Thessalonians. 5:18)