Monday, November 29, 2010

Bah! Humbug!

I hate holidays. They bring out the worst in people. GL has been screaming and pounding on the walls for hours at a stretch for two days now, yelling, "I want my Christmas presents now, now, now,  now NOOOOOWW!!!"

Once in a while, he'll throw in something memorable, like, "Christmas is never coming! I waited for half an hour!"

And we can't even laugh, because that makes him worse.

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Saturday, November 27, 2010

Happy New Year!

If that sounds a little confusing, you can read an explanation here. Read about how we celebrate Advent in A Voice Crying in the Wilderness.

This year we are learning Thou Didst Leave Thy Throne.

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Friday, November 26, 2010

As he got older, Spider-Man found it more and more difficult to read the newspaper without his glasses.

Thursday, November 25, 2010

Thanks to God

Thanks to God for my Redeemer,
Thanks for all Thou dost provide!
Thanks for times now but a memory,
Thanks for Jesus by my side!
Thanks for pleasant, balmy springtime,
Thanks for dark and stormy fall!
Thanks for tears by now forgotten,
Thanks for peace within my soul!

Thanks for prayers that Thou hast answered,
Thanks for what Thou dost deny!
Thanks for storms that I have weathered,
Thanks for all Thou dost supply!
Thanks for pain, and thanks for pleasure,
Thanks for comfort in despair!
Thanks for grace that none can measure,
Thanks for love beyond compare!

Thanks for roses by the wayside,
Thanks for thorns their stems contain!
Thanks for home and thanks for fireside,
Thanks for hope, that sweet refrain!
Thanks for joy and thanks for sorrow,
Thanks for heav’nly peace with Thee!
Thanks for hope in the tomorrow,
Thanks through all eternity!

Words: Au­gust L. Storm, in the Swed­ish Sal­va­tion Ar­my pa­per Strids-Ro­pet, 1891; trans­lat­ed from Swed­ish to Eng­lish by Carl E. Back­strom, 1931.
Music: Jo­hann­es A. Hult­man, in Sols­kens­sang­er, 1910 (MI­DI, score).
Al­ter­nate tune: Thanks to God (Steb­bins), George C. Steb­bins (1846-1945) (MI­DI, score) (the words are oft­en sung to this tune in Fin­land)

    My parents were married in a Swedish Baptist church, and the hymnal had a special section in the back of Swedish hymns in translation. While we sang a wide variety of hymns both in church and at home, and my mother often sang hymns to us as she rocked us in her old rocking chair, when I think of those times, it’s the Swedish hymns I remember.

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    Tuesday, November 23, 2010

    Safe in the Storm

    Shepherds Ministries, where I worked for six years, and both my parents, my wife, and my sister work, was hit by a tornado yesterday afternoon. Here's the official report from Shepherds:
    Union Grove, Wisconsin – A powerful storm rushed through the area at about 4:00 pm November 22, 2010 causing damage on the campus of Shepherds Ministries. Although some residents at the facility for individuals with intellectual disabilities had to be relocated to other buildings on campus, there were no reported injuries. According to Shepherds President, Dr. Bill Amstutz, "The storm warning was received, and we quickly moved all of our residents, students and staff on campus to the building basements and storm shelters which also serve as evacuation centers when severe weather is forecast.” Dr. Amstutz also shared that at the main building on campus - the Wood Center - a gas leak developed which caused the evacuation of residents and staff there to other buildings on campus. "We were surprised at the damage on campus as we have survived tornado warnings in the past but have never experienced any significant damage to buildings, storage sheds, greenhouse, some vehicles  and trees that occurred with this sudden storm,” added Dr. Amstutz. Area Fire Departments were on hand at Shepherds to assist with monitoring the gas leak and other potential problems until the power was restored. All power was restored by 11 pm Monday evening so residents and staff were able to return to the Wood Center, having been temporarily relocated for their safety to other buildings on campus during  the evening. Facilities Administrator and local planning council member Owen Lackey reported, "There was damage to several windows and doors, some roof damage, several trees toppled and storage sheds overturned.” Mr. Lackey also shared, "Complete assessment of damages continues, and we expect repairs to be completed within a short time with no relocation of residents, students or staff required.” Full assessment of the damage will take place during daylight on Tuesday November 23. Shepherds Ministries has been at the Union Grove, Wisconsin location since 1964 and provides spiritual, residential, vocational and recreational programs for individuals with intellectual disabilities. In 2008, Shepherds added a new educational program for young people with intellectual disabilities called Shepherds College. There are currently 130 full-time residents located on the campus along with 26 students in the new college program.  For more information, contact Shepherds at 262-878-5620.

    Thanks be to God, no one was injured. My wife and my Dad were both at work when the storm hit. One thing not mentioned in the above report was that Shepherds had just received several thousand Poinsettia plants to sell for their annual Christmas fundraiser. The greenhouse was damaged and temperatures fell to the mid-twenties. I don't know how many plants they were able to save. (The greenhouse is also where many of the clients work, and an essential part of Shepherds College, where people with intellectual disabilites learn career skills that can help them transition to independence.)

    Few of the families of Shepherds' clients can afford the full cost, so Shepherds depends on donations and fundraisers like their Poinsettia sale to continue operating. At this point, they are assessing the damage to the buildings and thanking God everyone is safe. When I took my wife to work today, I looked around. Most of the buildings have broken windows and roof damage. A dumpster the size of a pickup truck was blown across the parking lot. The small greenhouse is completely destroyed. The large greenhouse has most of its roof missing. There was extensive damage to the maintenance shop. One employee's car was blown three spaces down and all of the windows smashed. Many trees are down. Shepherds hasn't asked for donations, but I'm sure the needed repairs will cost money. If you make a donation as part of your Thanksgiving or Christmas celebration, would you mind noting it's in honor of Goldilocks? They'll know who you mean.

    Monday, November 22, 2010

    Papa Bear Gets Two Days Off

    I don't have a 9-5 Monday-Friday kind of job. It's more like 24/7. And I rarely get a day off. When you need someone to watch an autistic teen, your options are pretty limited, both in number and availability. (Thanks, Mom!) So when I do get a break, how do I spend it? Tramping through the woods, improvising shelter, and searching for missing persons or missing aircraft.

    I spent the weekend at Volk Field, getting ground team training with Civil Air Patrol. We covered a lot of ground. (Pun intended.) They divided us into teams, based on our level of training, and assigned us various tasks. Each day we spent about half the day in the classroom, and half in the field. In the field, we practiced line searches, missing person searches, navigating varied terrain by both day and night, signaling aircraft, searching for clues of a crash scene, and organizing a hasty search. We did vehicle inspections, set up site surveillance, and marked out a helicopter landing zone. We tracked and located a distress beacon, which turned out to be in the next county. Out in the woods, we divided into teams of four, and had half an hour to build an improvised shelter that would protect the four of us from wind, rain, and cold, using whatever we had in our packs or could find in the area.

    I came back exhausted, but refreshed. I learned everything I needed to move on to the next level, and then some. I kept a special eye out for one cadet who is on the spectrum. It was inspiring to see her overcome her sensory and social challenges and accomplish the task at hand. We put in two days of hard work that would challenge any adult. But our teams were about half adults, and half kids, ages 12 to 18. We had cadets handling every task and position except driving. That's what I like about CAP. There are certain tasks, like driving a van or flying a plane, that only adults are allowed to do, but there are many jobs reserved for adults in other organizations that cadets can do if they complete the necessary training and demonstrate the necessary responsibility. When you start acting like an adult, we'll start treating you like one. And these kids young men and women rose to the challenge.

    Note: The above photos are examples of the kinds of tasks we did collected from around the web. I was much to busy to take pictures.

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    Thursday, November 18, 2010

    Church with the special needs child

    Amanda Broadfoot recently linked an article she posted earlier this year in which she asked,
    "If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed."
    I hadn't yet found her blog when she posted this, but I think it's worth discussing, and I promised to fill you in on how things were going with GL and his volunteers.

    This is the first church that we've been in that expressed the sentiment, "We're all in this together. We need him as much as he needs us." rather than, "Hey, you! Straighten up your kid!" We keep coming back because our son is not only tolerated, but welcomed. Despite his challenges, they work with him so he can serve as an acolyte. When Children's Church wasn't working out for him, but he wasn't able to sit through the regular service, (He still isn't, most Sundays) several men in the church volunteered to take turns sitting with him during the service and taking him for a walk if he needed it, so we could have opportunities to worship. That's worked out remarkably well.

    With two of us and three volunteers, everyone got a chance to worship, and we each took responsibility for GL about once a month. I tried to make a schedule for whose turn it was to sit with him, but it was difficult. Both of us and all three volunteers were already on the schedule as readers, ushers, Children's Church teachers, etc. I tried to work it out so no one had the job two Sundays in a row or when they were scheduled to serve in some other capacity, but it wasn't always possible, and there were always last-minute changes due to illness, travel, etc. Most weeks, we ended up checking the schedule a few minutes before service to see who, if anyone, was available. Sometimes he sits with us, and we agree in advance who will take him out if he needs it. Our church writes its serving schedule quarterly, so I think I will ask the scheduler if she can work this job into the weekly schedule.

    We make sure GL gets his meds before church and provide him with a bag of snacks, including large quantities of Big Red. Chewing gum is calming for GL. So are strong flavors. He used to eat cumin straight from the jar. He sits toward the back. Yes, he's likely to be less of a distraction there, but it's also the easiest place for him to keep calm. The crowd is thinner, and most sounds are quieter and farther away. But what has made this work so well are the men themselves. I'll call them St. Luke, St. Stephen and St. Paul. Each has his own style.

    St. Luke has three children of his own, all younger than GL and BB. One of his daughters has special needs, too. His son is two years old, and likes to climb on, under, over, and between the pews. All three children like to look at books, color, and have snacks during church. They have a very active pew, but usually keep it reasonably quiet. GL finds the children entertaining, especially when he gets bored with the service. He's not usually very affectionate, but he hugs St. Luke, and cuddles up next to him like a favorite uncle.

    St. Stephen has two preteen sons and a teen daughter who usually sit with their friends. St. Stephen usually sits toward the front with his wife, (other family and friends usually sit with them) but on the weeks he sits with GL, they sit in the back, just the two of them. Other than occasionally teasing GL by asking if he can have all the snacks, he mostly focuses on the service, but walks around with GL if needed.

    St. Paul, an electrician by trade, is quiet and unassuming.  He seems to be the best at entering GL's world, not talking down to him, but putting himself in GL's shoes. I later found out he had filled a similar role years earlier in another church for a young man with autism. The father had died, and the mother needed help, so he helped out wherever he could. GL sometimes models his quiet, calm demeanor. Other times, he just stretches out on the pew as if to take a nap.

    The change of pace, style, and demeanor from week to week within the structure of the same time, place, and ritual seems to be working. He sits through more of the service more often and more quietly than he ever did before. If he leaves during the sermon, he insists on coming back in time for Communion. I know he finds the predictability reassuring. I believe he also recognizes that he is refreshed, restored, and strengthened by it in ways we don't fully understand.

    So in turn, I ask you,
    "If you attend some house of worship, I'd really love to know how it handles kids with special needs. If you don't know, could you do me a favor and ask someone? I have a couple of reasons for asking this favor: First of all, I'm curious about the various ways this is handled and looking for ideas. Secondly, I think that the more people ask this question, the more likely the issue is to be addressed."
    Please pass this on to your friends, post it on your blog, Facebook, wherever, and report back the responses. I'd really like to hear the discussion. And read the Broadfoot family's continuing story, Can I use miles to pay for my spiritual journey?

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    Tuesday, November 16, 2010

    ...And the Answers are...

    Five points if you know what movie each boy's costume represents.
    Toy Story, The Princess Bride.
    Five more if you can name the character each is dressed as.
    Andy, Westley
    Can you list all three names GL's character goes by? That's fifteen points.
    Westley, The Dread Pirate Roberts, The Man in Black (but I'll also accept Farm Boy.)
    I'll even give you ten points if you know BB's character's first and last name.
    Andy Davis
    Five more if you can name the actor who played each character.
    Andy: John Morris, Westley: Cary Elwes
    If you answer every question correctly, I'll give you five bonus points for being a smartypants. So, out of fifty possible points, what's your score?

    Friday, November 12, 2010

    Let's See How Sharp You Are

    OK, I'm just now getting around to posting Halloween pics. I've been busy. I wish I could say I've been busy doing something Big and Important, but the truth is, I've been busy with so many of the little things that nobody notices until they don't get done, that I can't even remember most of them.

    Our boys dressed up for Halloween, but as usual, instead of trick-or-treating, stayed home to hand out the candy. Hey, they like not having to walk anywhere and having free access to the treat bowl, and we like not worrying about where they are and what mischief they might be doing, or might be done to them. So it's win-win. Plus, you never get to big to hand out candy (and eat it).

    So here they are. Five points if you know what movie each boy's costume represents. (Ten possible, five for each boy.) Five more if you can name the character each is dressed as. Can you list all three names GL's character goes by? That's fifteen points. I'll even give you ten points if you know BB's character's first and last name. Five more if you can name the actor who played each character. If you answer every question correctly, I'll give you five bonus points for being a smartypants. So, out of fifty possible points, what's your score? Leave your answers in the comments, and I'll tell you if you're right.

    P.S. The replacement DVD player arrived yesterday, and it works. I left positive feedback. And someone gave us their old one. We are blessed.

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    Tuesday, November 9, 2010

    Catching Up

    We had an unusually hectic September and October this year. Then last week we were all sick, and Mama Bear had the worst of it. We still have the sniffles, and MB is still struggling with a cough and asthma, but I think we are on the mend. We didn't get much school done last week. As with last year, I got sick before I finished my Fall Cleaning. I never did finish last year. I'm hoping to finish this year, as soon as I have the energy.

    We usually sit down as a family sometime in October and discuss what is important to each of us in our Advent and Christmas celebration. That way, we include whatever is most important to each of us, but do not waste energy on things that no one really wants, but we all feel are expected. We haven't done that yet. We give gifts on St. Nicholas Day, Dec. 6, so our extra shopping is done by then. We try to stay out of stores as much as possible in December, and make Advent (the four Sundays before Christmas) and Christmas (the twelve days from Dec. 25 to Jan. 6) a quiet, low-key, peaceful, and holy season. You can read about our journey here.

    Update on the DVD player: After being plugged in for several hours, it powers up, but the door pops open at random intervals and it stops playing. The remote was DOA. The seller has shipped a replacement. I was afraid I'd get stuck paying to ship the bad unit back, but they said not to bother.

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    Bouncy,bouncy,bouncy,fun,fun, fun

    The good news is the “death cold” is on it’s way out of my body. The bad news is that it had settled in my lungs forcing my doctor to increase my inhaler for my Asthma. I rarely took it before, once or twice a week tops. Now it’s twice a day, more if I have trouble breathing. So today it was four times. Yeah, I can breathe. Boo, I can’t sleep. I can’t even hold still, I feel like Tigger on uppers.

    Friday, November 5, 2010

    DVD Player

    The new DVD player arrived today. It won't power up. I sent a message to the seller on eBay.

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    Wednesday, November 3, 2010

    My Socks are Stinkier than Your Socks!

    Tuesday, November 2, 2010

    I voted today. Did you?

    How do you treat a person with a disability?

    Someone left a comment on another special needs blog that she didn't know how to feel about or how to respond to the parent of a special needs child. Here's my response:

    The above comment reminds me of a PSA from the '80s that said, "How do you treat a person with a disability? Like a person."

    How do you treat the parent of a person with a disability? Like a parent, who's presumably doing the best he or she can. If they're obviously struggling, ask if there's some way you can assist. To those who say outsiders are not looking down on these parents, well, many aren't, but enough are to keep us on constant high alert whenever we take our children in public. If you doubt that, search "smockity frocks" AND  "autism". She has since apologized, but there are millions more like her. We can never get away from them entirely. Imagine living in fear that someone would call the police and report you for child abuse every time your child ran a fever. Well, the neighbors have called the police on us because our son was having a meltdown, and meltdowns are far more common here than fevers.

    How do you treat the parent of a child with a disability? Like a person.


    Monday, November 1, 2010

    The Path to Understanding

    Matt, who blogs at Dude, I'm an Aspie, has a great post about understanding people on the autism spectrum. He makes a good point that these principles also apply to understanding people across various other spectra.


    Another Great Post

    Jen at The King and Eye has a great post about autism and communication.


    Autistic People Communicate

    One of my favorite bloggers, Kathleen at autismherd, posted this response to the idea of a communication shutdown for autism awareness. I couldn't have said it better. Amen.