This kid’s not Normal.

I’m telling you what, we know so little about Autism, but the human mind is absolutely stunning. This kid’s not Normal, which is just awesome!

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Soggy Cereal

I really wish I was better. I wish I had more patience, more sympathy, more understanding. But unfortunately, I’m not. Here’s what happened…

Caedmon, Jackson, Andrew and I were enjoying a nice breakfast with Captain Crunch. I succumbed to my greatest grocery store weakness – the cereal aisle – and came home with the BOGO deal of Crunch Berries and Peanut Butter Crunch. Solid! Anyhow, Jack and Andrew were asking me about Jurassic Park and I was about to dig into my second bowl of peanut buttery sweetness when Caedmon told me he had to go potty.

I was annoyed.

I found his need inconvenient.

My sweet-natured, life-loving, cheerful child placed his right hand on his head (his sign for potty) and his self-absorbed, father rolled his eyes. In that moment I was more disappointed that my cereal would get soggy than I cared about my child. As if he likes having to depend on me or Jeni to take him to the bathroom. Like he waits for the most inconvenient time possible to ask to go. I’m such a jerk.

I asked if he could wait. He said no. I was more annoyed. I should be required to return my “SuperDad” T-shirt.

As I reflected on the moment, I recalled the book I just finished, Sacred Parenting. (It’s jumped to my number one, not even a close second, book about parenting, by the way. I could not recommend it more. Seriously, go order a copy.)

The act of raising children confronts our narcissistic selfishness and invites us to sacrifice our own welfare on behalf of another human being.

I was reluctant to sacrifice crunchy cereal.

Sacrifice and the corresponding virtue of humility aren’t built on giant gestures as much as they are forged with consistent, thoughtful actions of an everyday nature…

Like taking your son to the bathroom?

I hate that it still happens, but sometimes I need to look over Caedmon’s freckled cheeks, into his innocent green eyes with joy wrinkles at their corners, and be reminded of my selfishness. I can put on the costume of kindness most days, but these moments remind me of the monster lurking within me.

The monster reminds me of my Savior.
He had to die because that monster lives.

…if we live coddled Christian lives, never sacrificing ourselves, the cross becomes a sentimental fairy tale – a good story to tell once a year, but something that becomes so familiar we can’t wait to move on to talk about the resurrection. But if we have suffered as Paul suffered, if we have sacrificed for someone as Paul sacrificed for those under his care, we look at the cross in awe because we realize that all our suffering, multiplied by a hundred, still can’t compare with what Christ endured on our behalf. As a result we are in absolute awe of what God has done for us. The passion of the cross metamorphoses from an abstract concept to an astonishing reality.

Parents have to sacrifice. Rarely is it the “giant gestures,” but the 24/7 mundane tasks of child care. And there are plenty of those times when I grumble, even if I do so silently. But you know what? Jesus still loves me.

This late night lament might have been a bit melodramatic for some, but I sure felt like the Grinch this morning. I wonder if you ever feel the same way? I wonder if you’ve ever been presented with an opportunity to serve God by serving your child and found yourself annoyed. If that’s you, please know you aren’t alone. There’s at least one other parent out there struggling with the same things. But also remember God loves you, and as your child hugs you unconditionally and deeply receive it as a tender mark of forgiveness and restoration from your Heavenly father.

None of us can leave a perfect example, but we can provide a genuine example, an authentic picture of what it means to walk hand in hand with God.

All quotes taken from Sacred PArenting, by Gary Thomas.

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To This Day

I came across this today and like a master’s painting of scenes from the holocaust, it’s haunting and beautiful at one time. Many of us and many of our kids know well the experiences and emotions of which Koyczan speaks. Some of us – guys like the immature fool I was in high school – know what it was to put people into those experiences and be the cause of those emotions.

Please take 8 minutes to watch.

Please focus for 8 minutes to listen.

Please reject Normal and appreciate to Beauty that is us.

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How we remodeled our bathroom to make it accessible.

We moved into our current home in the spring of 2012 and knew we would like to make some improvements for accessibility. The first thing we did, and anytime I say “we” I mean hired pros to do it for us, was remove a few concrete stairs going up to our back patio and replacing them with a concrete ramp. Then we widened our main entry door to 36 inches and added a small ramp from the patio to the threshold. All relatively inexpensive, simple stuff. With basic home access taken care of, we set our sights and sledge hammers on this bathroom.

Double lavatories on the wall to the right of the original entryway.

Double lavatories on the wall to the right of the original entryway.

I'm standing in the entryway. There was very little floor space.

I’m standing in the entryway. There was very little floor space.

Just a common, 60-inch tub. Notice the in-swinging door.

Just a common, 60-inch tub. Notice the in-swinging door.

The biggest issues were  lifting Caedmon in and out of the tub, the sinks being unreachable from a wheelchair, and a lack of floor space for lying him down to help him change clothes, etc. We hired a draftsman to draw out the blueprint and hired a builder to come in and do the work. I recommend hiring a draftsman, architect or some form of designer to help you maximize your square footage and make sure your builder has clear direction. A quick shout out to the boys over at Where there’s a Wheel there’s a Way for taking the time to talk to me about the bathroom in their home and providing some great insights and perspective. I’ll spare you the actual demolition and construction details and skip right to the good stuff. Quickly, almost every hyperlink is a direct link to the product I’m describing at the time; I thought that would help. Now for what you actually paid — very little I might add — to see.

shower The roll-in shower was the primary objective in the remodel. We took out a small closet and moved an AC duct to increase the width from 60 to 78 inches. We added grab bars (24-inch and 9-inch) all the way around and installed two shower heads with the hand-held designed for Caedmon. He is far more adept with his right hand which is why the plumbing is laid out as it is. I’ll talk about the chair later. The grab bars and tile were right off the shelf from Lowe’s  and the fixtures are basic products as well. caedmon in showerCaedmon felt like showing how he uses the hand-held shower head. I can’t tell you how much easier bath time is now. His brothers really enjoy the vast expanse they can all now use together. DSC00226   We installed grab bars (16-inch) everywhere we could with the intention of Caedmon being able to propel himself around the room in his wheelchair or a rolling bath chair. And there’s always the hope he can lean on them as he stands one day. The light switches and outlet light up when the lights are off to serve as a night-light. We replaced the in-swinging door, which used to be about where the outlet is now, with a 36-inch pocket door in the wall that used to hold the double vanity. This was essential to maximize floor space. We considered pneumatic and electric-powered pocket doors but do to cost and the fact that Caedmon can manipulate a traditional pocket door we kept it simple. curtainThe picture above is a shot of the lower corner of our very helpful, ingenious shower curtain. It’s a heavy-duty material, but the coolest feature is the 4-inch lip on the floor. This is designed to help keep water in the shower area and off the rest of the floor. If you are unfamiliar with roll-in showers, there is no threshold or tub to keep the water in the showering area. The curtain also has six, 3×3 Velcro patches to adhere the curtain to the walls as another safe guard against dousing the whole bathroom. toiletNot a whole lot to report here. The toilet has a thinner tank that bought us an extra inch or two of floor space, but other than that it’s pretty standard. Lowe’s had it on their shelf. The little cabinet is a simple put-it-together-yourself kit we found at Wal*Mart. DSC00224This sink was the inspiration for our whole project. We first saw it in the showroom of Accessibility Solutions in Tallahassee, FL. They are a construction and remodeling firm specializing in accessibility. There are two features that we thought were pretty cool: the overhang of the sink’s bowl and the offset, rear placement of the drain. The overhang is intended to allow the user access to the sink without being impeded by the counter top and the drain is designed to move the plumbing further back and to the side to allow the users knees and the wheelchair more clearance under the counter. We looked all over the place for this fixture and learned the product had been discontinued and was ironically enough, inaccessible. However, the guys at Accessibility Solutions donated theirs, counter top and all, to us so they could get a new show room model. Yahoo!

hand towel

Because the pocket door is in the wall to Caedmon’s right and they would either block or scratch it, we could not put screws or nails into in the wall. Therefore, we decided to install the hand towel ring on the face of the counter. It works great for Caedmon! It turned out to be a good location for his brothers as well.

DSC00229

This is an expensive (over $300!) but handy feature for an accessible bathroom, especially one with little to no storage. It’s a fully functioning medicine cabinet that also has the capability, as shown in the picture, of tilting the mirror. The tilt is key for someone using a wheelchair because it allows them to see their reflection.

sink

Even with a tilted mirror and a lowered sink height Caedmon barely makes it into this picture, LOL. His chair will only get bigger as his body gets taller so this problem will go away. By the way, we decided to place the counter top at the higher edge of ADA standards because we plan on living in this house well beyond Caedmon’s elementary years and wanted the height comfortable for him for the longest period of time.

bath chair

This chair is wonderful. We’ve owned it a long time and didn’t like it because we tried to use it in the bathtub with Caedmon and it wasn’t very helpful. However, in the shower, the “Manatee” by R82 is perfect. As you saw in the picture earlier, we can strap Caedmon safely which makes helping in the shower feel more like a barber working with his customer than this,

That actually paints a pretty good picture of watching Jeni get Caedmon in and out of the car, too. Anyway, I highly recommend this chair if you are using a shower as the primary bathing method.

That’s all from the Sprague house, but feel free to ask any specific questions you might have in the comments and I’ll do my best to provide a satisfactory answer. I hope you found this helpful.

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Extraordinary Books: The Bryson City Series

Bryson City TalesThis collection of books are some of my all-time favorites. Partly because they are written well, partly because they’re full of rich characters and pleasant stories, but mostly because of how much these books resonated with me and how I came upon them.

My wife and I were living and working in Highlands, NC and had recently found out Caedmon had Cerebral Palsy when a friend came to my office to give me Bryson City Tales. He said he thought of me when he read it because it’s a memoir of a doctor from a bigger city moving to the Smoky mountains who also had a child with Cerebral Palsy. I would have thought of me too! I love how a story can bring friends to mind and how sharing that story can impact that person so positively. I’m forever grateful to that friend for these books and planting story telling seeds in my heart that are just beginning to sprout.

Bryson City SeasonsWritten by Dr. Walt LarimoreBryson City Tales is the first of three books set in Bryson City, NC in the 1980s. Bryson City is just across the holler from Highlands, NC by the way. All three are overflowing with stories of the mountains: moonshine stills, small town quirks, backwoods remedies, beautiful vistas, and eccentric locals. All being told from the perspective of an outsider learning to love a region and the people who live there.

Bryson City SecretsThe story of the Larimore’s years in Bryson City introduced me to much of what I would later experience with Caedmon, and one of the things I so appreciated was how his daughter and her Cerebral Palsy were simply another part of the bigger story. These books aren’t about her or C.P., but they touch on so many aspects in a sincere, sitting-around-the-kitchen-table sort of way. Dr. Larimore possesses the expertise of a physician but always comes across as the doctor friend you can call at 1:00 AM when something’s wrong with your child and you need someone who’s more friend than doctor.

When you read these books you’ll grow to appreciate the quaint, quirky little towns that hide beneath the colorful canopy of the Smoky Mountains; you’ll hear from a father who has a little girl with Cerebral Palsy and some of the things his family went through; you’ll see a slightly arrogant big city doctor grow in humility and appreciation for the ways of old and the people who live in western North Carolina.

These really are favorites of mine and I’m convinced you will thoroughly enjoy them if you ever get to read them.

As an aside, Kate Larimore is a very young girl in these stories but has since grown up and won a scholarship based on an essay she wrote about overcoming obstacles.

You might also appreciate this brief devotional, Prayers for my Daughter, Dr. Larimore shared about the questions we have when a loved one has a disability, how that can affect our prayers, and how we can be surprised by what God’s doing all the while.

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How can I reach out to a family with Special Needs?

BigBook2012Cover-110212a-788x1024I was given the opportunity to write an article for The Old Schoolhouse magazine on the topic of special needs and hospitality. Inspired by the moving story of Mephibosheth from the Old Testament, “Hospitality That Proclaims the Gospel” provides one answer to the question “How can I reach out to a family with special needs?” The article was published in the 2013 print edition, is available online for all to read, and it’s totally free.

In case you missed it, The Old Schoolhouse published another of mine, “Nobody’s Normal,” in a previous digital issue.

 

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Why it’s okay to think of yourself first.

Caregivers are often unaware of their own stress and depression, but many of them are depressed 50 percent of the time. Not only is the day-to-day caregiving difficult and challenging, but the financial impact on caring for the disabled can also be overwhelming. – Amy J. Wilson, M.D., chief of physical medicine and rehabilitation for the Baylor Health Care System

Photo taken by Mike Ewen of the Tallahassee Democrat

Photo taken by Mike Ewen of the Tallahassee Democrat

Almost everyone had left for the night, the lights were off, balls were put away, and the Miracle Field was locked up. We had just finished our first night of kickball with Miracle Sports and it was a great night. Athlete enthusiasm was at a high and the volunteers were particularly excited themselves. We had a lot of fun.

As I was leaving, I had a brief conversation with the mother of one of our athletes. Her son is extraordinary and wonderful. He tries to wrestle with me almost every Thursday. She mentioned beginning a Bible study that night and the struggle she had in making the choice to do it.

If I may paraphrase her words, “It’s just hard to do stuff like this [Group Bible studies] because I am always putting him first. I feel guilty not making his needs primary, but I think I need to do this. Thankfully, our friend offered to bring my son tonight so I could participate.”

I know her feeling. I bet you do too. Some of us have family members who require extra care, some who are totally dependent on a caregiver, and loving parents, siblings, and friends rightly want to help them as much as possible. Do unto others, right? Well, if we are being honest, providing that care can be exhausting.

I’m a 6’5″ 250 pound, ex-college football player and the physical care for my 45 pound son gets the better of me sometimes; I can only image the toll it takes on his much smaller mother. I know families where the caregiver is smaller than the person she’s caring for. Those people are almost super-human in their emotional and physical dedication, but I bet they hit the bed hard every night too.

Reading House Rules gave me a better picture of the emotional burden, sometimes physical too, of caring for someone who’s got Autism.

Whether it’s emotional, physical, financial, relational, vocational, or spiritual weight, the burden can overwhelm us at times, which is why I was so happy my friend was participating in her new Bible study. She made a choice to care for herself, and taking care of yourself first is essential to providing good care for someone else.

Can I offer a few thoughts on this?

  1. There is no sin in being tired. We are finite creatures, dependent on things like food, water, and sleep. We aren’t robots, aren’t really super-human, and don’t have to pretend we are. Even those whose lives seem most at ease get tired, so it should come as no surprise that you will too. It’s okay. In fact, it reminds us who God is and who we aren’t.
  2. You are a multifaceted person. Where the ancient Greeks tried to subdivide us into a physical being and a separate but equal spiritual being, modern thought has tried to eliminate the spiritual all together. The truth is we are a living breathing duality, both spiritual and physical. You can eat, sleep, and exercise perfectly, but if you neglect your spiritual health you’ll crash. My friend is actually addressing both in one cool Bible study called, Run for God which trains people for a 5K while keeping their focus on Christ. (Last night was the first I heard of it so proceed with your own discernment.)
  3. We need community. We were not designed to go it alone, and there are no exceptions. Event the most introverted among us needs healthy interaction with other people. And facebook doesn’t count! Social media is a great avenue for communication, but it’s terrible avenue for community. You need to get around others who can encourage and even challenge you sometimes. Make this happen.
  4. They understand. Those that need us aren’t expecting us to be perfect. They love you like you love them. Some may not be able to say the words, some may struggle articulating the emotion, and some may lack the ability to return physical affection, but I can assure you love transcends ability.

Far from an exhaustive list, but a good starting point in caring for yourself. Others reading this post would love to learn from you, so if you have any good tips for taking care of yourself please share them.

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Extraordinary Books: All He Needs for Heaven

allheneedsAt a recent conference I had the privilege of meeting Chet McDoniel. I met him in front of his booth, where he was promoting his speaking ministry and selling his books. I purchased two volumes, one written by Chet and the other written by his father, Jim. The latter, “All He Needs for Heaven,” was the one I chose to read first and the object of this review.

Chet was born as a “limb deficient child,” having no arms, and legs that are very short, “as if the thigh section was missing.” This book walks the reader from the delivery room surprise all the way to present day, dedicating sections to various issues many of us must face as we live in extraordinary families.

I imagine much of this will be in Chet’s book, but the overarching theme of this one was about Chet’s unyielding, enthusiastic outlook on life. He never backed down from a challenge. His mom voiced the fears I sure all mothers endure,

Sometimes, I just have to turn and walk away. I must let him do what he thinks he can.”

If he was interested in something, he never let his unique body type keep him from trying. He even once threatened to break a bully’s ankles with his power chair when the attacker tried to fight him.

The goal of the book seems to be to inspire. You aren’t going to find anything terribly pragmatic and you won’t find yourself jotting down ideas to implement in your home, but you will find a young man who never let a disability dictate his destiny and a father who was his biggest fan.

 

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Albert Camus, Speaking of Normal

“Nobody realizes that some people expend tremendous energy merely to be normal.”

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Nobody’s Normal, in Print

In case you’re interested, the August issue of The Old Schoolhouse Magazine features an article I wrote called “Nobody’s Normal.” If you frequent this blog the ideas in the article will be familiar, but I was able to illustrate it in a few new ways.

If you want to read it simply, click the link below and it will take you to the digital magazine site. Once there you can click the yellow “Nobody’s Normal” title on the cover or the “Nobody’s Normal” title in the Table of Contents on the left side of the page. The article is on three different pages, so you’ll have to use the page navigation on the top of the magazine to read it all. I’d love to know what you think.

And remember, if you aren’t subscribed to the blog please enter your email address in the form on the top right of this page. Then you’ll get emails anytime a new post publishes.

Thanks for reading!

Here’s the link – The Old Schoolhouse: August Edition

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