Adapting Creatively: January 2011

5 Ways to Break Out of a Communication Slump

True confession here -- my daughter is in a communication slump. She normally indicates choices to symbols and words with eye gaze with clear intention. But not right now.

Right now we are getting mush. She won’t make a choice or her answers are so fleeting and subtle that they go unnoticed. But she doesn’t seem to care if we haven’t picked up her response. It’s the not-caring that concerns me most.

We wrack our brains trying to figure out “why?”

-- Is she not motivated to passively respond anymore?

--Does she want a way to express her own thoughts?

--Have recent medication changes dampened her affect so she doesn’t really care?

--Are physical issues fatiguing to the point she has no energy for communicating?

--Are we boring her with mundane choices?

--Is she exerting her teenage will?

--Is she slipping into learned helplessness?

In the past, the cure to her communication (or academic) slumps has been to raise our expectations. Require more, not less. Up the ante. I think it’s time for that again.

How to we raise the bar? How do we bring her out of this communication slump?

1) Find ways for her to express her own thoughts. I’d rebel, too, if all I could do was pick between the lousy choices that someone else assumes I might want to say. She doesn’t have a voice output device and is dependent on the symbol choices we offer. That has to be frustrating.

Spelling, while allowing unlimited expression, places heavy demand on her eye motor control. But in a supported form it might be a feasible supplement for communication. If I know the context, she wouldn't need to spell the whole word, which would reduce some effort. The trick is access; we could work on that.

A Pragmatic Organization Dynamic Display (PODD) system might open some options for self-expression, even if it is limited. Linda Burkhart has a good pdf about them too.

And all the while, we need to keep moving forward toward getting a device that allows for independent access. For my daughter, this involves eye gaze technology. That equals Beaucoup Bucks and a funding ~~nightmare~~ challenge.

2) Provide a means to do more than merely respond. This can still be accomplished through low-tech systems. She needs a way to initiate conversation, to share information, to ask questions, to comment. Topic setters, such as questions of her choosing recorded onto a sequenced message communicator, or a photo album filled with prompt pictures, are an easy way to allow a child to initiate conversations and share novel information.

In the past, we borrowed an Ablenet Step-by-Step from school. Her para would record events from the day as a little turn-taking script that she shared at the dinner table. What motivation it was to be in control of the dinner conversation! I need to check with our new SLP to see if this is something we could do again.

3) Move past yes/no. While yes/no responses open a world of quick responses, my daughter’s staff and I have gotten W-A-Y too comfortable with asking yes/no questions. As a result, part of the shut-down we’re seeing may be directly related to this.

Yes/no questions are closed. “Do you like this?” Yes? Conversation closed. Interaction is reduced to a “test.”

An open-ended question allows for further conversation. “What do you think about this?” Not only does it promote taking turns and engaging in conversation, it’s more natural…and more respectful.

There are far too many shades of gray between yes and no. How discouraging it must be to have to commit to a solid “black or white” answer when that isn’t what you mean!

“Is your day going well?” to gain a yes/no response is an example. There’s no option for degree of goodness or badness, nothing to promote continued conversation. An open-ended question of “How is your day going?” is much better. That’s what we’d ask our friends. Of course, in my daughter’s case we’ll have to provide a variety of responses, from ‘rotten’ to ‘fantastic,’ with a couple intermediate shades of gray (‘not so hot,’ ‘Okay,’ ‘pretty good’). Whether she is having a fabulous day or a terrible, horrible, no-good, very bad day, we are prompted to explore why.

Convenience makes it easy to fall into the yes/no trap. We don’t have to dig up symbols. Think I’ll spend today working on an expanded flip chart to make generic answers easy to retrieve. Hmmm. Symbol retrieval is a genuine management issue. Got any excellent ideas (short of an iPad…believe me, I’d spring for one in a heartbeat if the budget allowed)?

4) Increase responsibility for sharing information. There is something marvelously motivating about being the Keeper of Unknown Information. Some of my daughter’s clearest eye gaze – or, shock of shocks, switch use! – has come when she has something to tell us that we have no clue about.

Messages about what happened at school are great for this. We have a spot on our daughter’s home-school-home checklist called “Be sure to ask A about…” I include the answers so the staff can set up for my daughter to respond, but my hunch is that it defaults to yes/no. That old time and symbol management issue again…

Think I’ll add a similar “Be sure to ask about…” section to the school-to-home side.

5) Find motivating partners. Sure, my daughter needs to communicate with the adults in her life. We need her help to know what she thinks!

But let’s face it, much as I would love to imagine myself as a fascinating person to talk to, I don’t hold a candle to her peers. Her school staff is great, but they aren’t peers either. What she needs are good chats with the other high school girls…about boys, clothes, music, acne…whatever it is girls talk about. I’m not sure I really want to know.

And – here’s the rub when it comes to parenting teenagers – there comes a time when a young lady becomes highly motivated to talk with young men. Shudder. But we need to face reality.

So there you have five ways to work out of a communication slump. What other ways do you know? Please share!

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Adapting Books for Computer Access

To become readers, children need to read. According to Dr. Karen Erickson, one of the nation’s leading experts on literacy for people with disabilities, children need access to 1500 books to develop literacy. In order to qualify, these books must be accessible to the child.

But kids with severe motor or reading challenges may not be able to access traditional books. We have talked about adapting books to make them more physically accessible. But even these adaptations don’t allow independent reading for every child. What if a child cannot hold a book at all or turn its pages? What if he has not figured out how to decode writing and needs to have the book read aloud so he can stay engaged?

For kids with these issues, the computer opens up wonderful possibilities for access to books. It can remove some of the physical and cognitive barriers that make traditional books inaccessible. They can hit a switch to turn the page, or even have the pages turn automatically. You – or the computer, if yours is equipped with a pleasant voice – can read the text out loud.

Through the computer, kids can have access to the same books used by their classmates, just in a different format. They can have opportunity for pleasure reading.

And there’s more good news – it is easy to adapt books to read on the computer! Once you get into a rhythm, it even goes pretty quickly.

There are plenty of commercial software programs commonly used with students in special ed classrooms that can display books on the computer: Classroom Suite, Clicker, BoardMaker, My Own Bookshelf…the list goes on.

The good news for families – or for school districts affected by the current economy – is that books can also be easily created in PowerPoint, a program commonly found on the average computer. I’ve never used OpenOffice’s Impress myself, because my computers have always had PowerPoint, but my understanding is that it can be used similarly – for free!

Before we get into the nuts and bolts of creating an adapted book, let’s take a minute to talk about copyrights and Fair Use. Copyright law prohibits the willy-nilly copying and dispersing of materials to protect the interests (and livelihood) of those who created them. The Fair Use Act says that materials can be adapted for access by people with disabilities, provided we follow certain guidelines. We must own the book, for example. The adapted form is for use only by the person having disabilities (i.e.: we do not sell or otherwise circulate the adapted material).

Here’s a great way for teachers to demonstrate Fair Use as they adapt books. Save the adapted copy to a disk which is then stored inside the front cover of the book. This demonstrates ownership of the book – it’s right there in your hand, after all, and not on some library shelf! It also makes organizing a breeze, because you know where the disk ~~should~~ lives.

Okay, with that under our belts, let’s get started! I’ll walk you through an adaptation of Joyce Dunbar’s book Baby Bird (Scholastic, 1997).

1) Create a new folder on your computer desktop and name it for the book. Important: you will drop EVERYTHING related to this book in this folder. It will save you time not to have to fiddle with a finding the file each time you need to open it. Trust me.

2) Take a “picture” of the front cover and all the pages of the book. You might like to scan them on a flatbed scanner, which allows you to fold lots of laundry at the same time. It also tends to result in less “doctoring” later. Save the scans to your Folder.

You might prefer to snap a picture of the pages with a digital camera, which is a very fast way to accomplish the capture. It also works well for oversized books that don’t fit on a scanner. Just be sure your camera is steadied at the same exact distance for every shot. And use high resolution. Import them to your Folder.

This is how I set up for a “book shoot.”
A Velco strap on the tripod anchors the camera to a chair.
The tape on the floor keeps everything lined up j-u-s-t right.

3) Correct the pictures in a photo program (I use Paint.net – it’s free and easy to use).

-- Crop out anything around the edges of the page.

-- Adjust for brightness if needed (the pages may need some corrections along the spine, too).

-- Adjust any tilting (sorry, Paint.net doesn’t do this…better to shoot straight)

-- Name the pages (00, 01, 02, etc.) and save to the Folder.

4) Set up your PowerPoint template. For a VERY complete discussion on this, check out Create Talking Books: PowerPoint from the Assistive Technology Training Online Project. It gives you links to Richard Walter’s ever-so-complete guide to building a template from scratch, How to Create Talking Books in PowerPoint ’97 and 2000. As well, you will find an 8-page quick start guide. And a template.

If you want to build your own template, whether in PowerPoint or one of the assistive software programs, it’s basically a blank page with next page/previous page buttons. You may wish to have pages “turn” automatically or to enter a delay feature to prevent rapid-fire switch hitting.

-- Open PowerPoint and set the slide for a blank layout. I’ll use PowerPoint 2007 in the screenshots. I like to activate the gridlines (“View” tab) so I can line things up nicely.

-- Add page navigation buttons. Place a Previous Page action button to the lower left corner and a Next Page button to the lower right (Insert > Shapes > Action Buttons). Size them equally, making them large for fledgling mouse users or small for switch hitters, using the gridlines as a guide.

--If you want a clickable button to speak the text, add an optional Play Sound button. We’ll come back later to adding speech, but for now, if you want human narration, slip that button into the template.

--If you need to set a delay to prevent repetitive hits (or just slow the kids down so they are more likely to engage with the text), cover the whole page with a Magic Invisible Box (Insert > Shape > rectangle). Temporarily, it will block out the page; that’s okay. You want the rectangle to block access to the buttons and then “disappear” so the buttons become available to act. Select Animations (1) > Custom Animation (2) > Add Effect (3) > Exit (4) > Disappear (5). Decide how much time you need the navigation buttons to remain unavailable and enter this in the timings.

Now doubleclick “disappear” setting to call up the Disappear Effects box (1). In the Timing tab (2), select “after previous” (3) and set the number of seconds to delay (4). This can vary according to your student’s needs. NOW format the rectangle shape to “100% transparency” and “no line” to make it invisible. "No Fill" will not substitute here; you need 100% transparency to make the magic happen!

-- To make the pages forward automatically instead, set the slide transition (Animations (1) > Advance Slide (2)) to advance automatically after a set number of seconds. You can adjust this up or down to accommodate different lengths of text once you start filling in the template.

--Save the template to your Folder.

5) Import pictures to the template. Be sure to line them up with the gridlines so every picture has the same dimensions. This makes for a much smoother read!

6) Adapt text if needed. Your student may need the text to be rewritten in a larger or simpler font or reduced in amount. Also, if you plan to use text-to-speech with this book, there must be “written” text for it to recognize rather than a photograph of text. I like to cover the existing text with a rectangle, set the rectangle shape to “no line,” and then color-match it as close as possible using the Custom Colors dialog box. If you move it so the bottom-right corner is close to your text box, you can eyeball a pretty decent match.

An interesting utility for perfectionists might be OB Utilities’ Color Picker (whose trial offer freaked out my Norton antivirus, so I couldn’t test it to give an opinion).

This is the same page as the last picture, only with a text box
added on top of the original writing.
Isn't that so much easier to read

7) Add narration if desired. There are several ways to go about this.

To narrate individual slides with a human voice, you can Insert (1) > Sound (2) > Record Sound (3). Click the red dot on the Record Sound pop-up and save it the Folder. It creates its own little sound icon, which you can enlarge to cover the sound button at the bottom of the page.

If you record outside of PowerPoint using something like Audacity (free, wahoo!, gives you lots of control). PowerPoint uses .wav files, so it’s easy to export these from Audacity to your Folder. Hyperlink this sound (faithfully saved to your Folder, right?) to the button at the bottom of the page.

You could also have the narration play automatically with a delay if you attach it to the exit action of the Magic Invisible Box (see Item #4, setting up your template). Look under the “effects” tab for sound settings; here is where you attach the sound file from your Folder.

Another option is simply to narrate the whole book, rather than individual pages. To do this, click the View tab (1) > Record Narration (2) > OK to the pop-up box (3). Choose where you want to start (the front cover is a good place!) and walk through the book, reading aloud as you go. The narration will record BOTH your voice AND the timing for each slide.

One last option is to have the computer read the narration. For this, you will need a free Add-On called PowerTalk. It will read the text you have typed onto the page. To use, launch PowerTalk first, then the PowerPoint presentation or show you have saved.

8) Save the PowerPoint to the Folder. Burn the Folder and all it’s contents to disk. Keeping everything in one folder insures that the sound files will copy with the PowerPoint. You can certainly save a PowerPoint package, but I like the freedom to access the original creation and make adjustments for future students – or your own child as she progresses – with different skills. I like to also save a PowerPoint Show (.pps) copy that cannot be altered. This avoids, er, accidental changes. If you include the student’s name in the filename, you will know you are opening a copy that is accessible to that student.

9) …and store inside the front of the book. Here are a couple tricks make this storage system work especially well.

1) Print labels for each disk from a picture of the book jacket. This makes it easy for students to match the pair before putting them away. I personally use Avery Dennison’s “CD Stomper” and labels.

2) Fix a paper computer sleeve or an envelope to the inside of the jacket with clear packing tape or clear Contact paper to make it strong.

3) If the books will be carried by students (let’s say you have a wonderful helper who does cleanup for you), I recommend facing the opening of the enveloped towards the spine. This keeps the disk from sliding out.

The envelope on the right keeps the disk from slipping out
when the front cover is closed.

There! It sounds more complicated than it really is. Once you make a book or two, you’ll be able to crank them out in little time. Also, for teachers, this is a great job to assign to parent or high school volunteers, especially those who can only help out from home.

Let’s get reading!

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You might also like:

Adapting Books for Physical Access
Adapting Picture Books for Lap Reading

Murphy’s Law of Special Needs

A picky eater WILL be attracted to the dog's food.
Picture by Robert S. Donovan at flickr

We all know Murphy’s Law: “If anything can go wrong, it will.”

There are corollaries that expand on this:

...at the most inopportune time.
...in the most costly manner.
The greater the importance that everything go right, the greater the likelihood things will go wrong …

Parents dealing with medical, behavioral, and other issues related to disability have corollaries unique to our lives. It seems there are days when Murphy’s Law seems to swing into full effect, doesn’t it? I have to stand back and laugh…or I’d probably burst into tears.

Here’s a brief list of extensions to Murphy’s Law for families dealing with special needs that might ring true for you, too. There are ones we’ve experienced and ones shared by friends parenting kids with special needs. Enjoy a smile from them!

The likelihood of a spit-up is directly proportional to

a) the urgency with which you need to leave

b) the cuteness of an outfit (and the lack of backup outfits)

c) the staining factor of the most recent meal

Anything that is not written on a list WILL be forgotten as you pull away for a cross-country vacation. Therefore, DO write things like shoes. Trust me.
The likelihood for an illness is directly proportional to the anticipation and preparation behind a family vacation.
[Toileting mishaps would fill a book, wouldn’t they? I won’t even go there…but Murphy thrives on these!]
The better prepared you are, the less likely something will go wrong (we LIVE by this one!).
When a child’s alertness, health, and motivation finally peak at the same time, the Assistive Technology WILL crash. This is especially true if the AT is being used for an evaluation.
Once you figure out exactly what to order from your home health supplier, the manufacturer will change the amount of diapers per package.
The item you most urgently need from the home health order will be the one item on back order.
The less appropriate the action (nose picking, grabbing ice cream from a stranger’s hand), the greater likelihood a child with no motor control will mysteriously be able to perform it. In public.
If a child cannot speak clearly, the words they can produce with impeccable pronunciation will be swear words. Or their mispronunciations will sound amazingly like swear words.
The likelihood of finding an open handicapped parking space increases when you shop without your child. In the slim chance you find an open space when your child is shopping with you, the ramp opening will be on the wrong side.
The symptom that has been worrying you will disappear the second you walk into the doctor’s office.
The best way to prevent a seizure is to go in for an EEG.
The best way to insure a child will learn to walk is to buy him a wheelchair. The likelihood increases if you have had to fight relentlessly for ages to get it funded…or buckle under and pay for it yourself.
The likelihood your child will need to be assisted to the bathroom right now increases with the delicacy of timing of the gourmet meal you are cooking.
The feeding pump will wait to alarm until after you have finally sat down to eat your own dinner.
The farther from home you must drive to specialty appointments, the greater the chance they can’t be scheduled on the same day.
Feeding tube accidents will involve the greatest amount of bedding possible. Especially if you just washed the comforter and blankets the day before.

What corollaries to Murphy’s Law would you share with us? We could all use a good chuckle…

Free Online Switch Activities from Kate

Kate Ahern has done it again, showering us with a wealth of great FREE sources for switch activities! She is such a master at uncovering great stuff and generously passing it along.

I’m so grateful Kate has done this, as her list is ready for you now, ripe for picking. You can find some things today to keep your switch user(s) happy. I’ll keep plugging away at my review of these sites that I’ve been busily working on to share with you. Be watching for a switch-themed week coming up (date still to be determined); there are some fun things to share.

Be sure to hop on over to Kate's site to look at the free online switch activity sites she's posted. And be sure to leave her a note...she does so much for the special ed community.

Do you have any other resources to add to Kate’s list? If so, please do share!

The Parents' Corner: Great Resource for AAC Families!

Hiding all over the Internet are diamonds just waiting to be discovered. One such gem is the Parents’ Corner on the AAC Institute website. If your child uses any form of Augmented or Alternative Communication, low- or high-tech, the Parents’ Corner is for you!

Don’t let the name mislead you into thinking this resource is just for parents, either. The Parents’ Corner is full or resources for speech therapists and teachers as well. There are items you can use directly and others perfect to print out for families to follow up therapy activities at home.

The Parents’ Corner houses a collection of monthly articles written by the amazing Robin Hurd and some outstanding guest authors. Robin is the mother of four boys (a feat which, all in itself, makes her a hero), two of whom use AAC. Her background in early childhood education makes Robin a natural at linking the theory of learning AAC with the practical aspects of daily living. She’ll help you feel like you are sitting at the kitchen table sharing coffee and ideas for meaningful ways to bring AAC into your child’s life.

Here’s just a sampling of the topics you will find helpful:

Encouraging AAC use:

Developing Language Skills:

Building Literacy:

Literacy for Children who use AAC, June '05
Reading Independently: Using Computers to Access Books..., July ’05
Writing: The Other Part of Literacy, Aug ’05
Advancing Literacy for AAC Users, Jan. ’08 (shameless plug for a post guest-authored by yours truly)

Education:

Parenting:

Pour another cup of coffee and sit back for some very helpful and encouraging reading! What article at the Parents' Corner do you find especially useful?

Scholastic eBook Sale...and an access tip!

In case you hadn’t heard, Scholastic is offering a great selection of eBooks for just $1.00 (US) at their Teacher Express storefront from now until 1/31/11. There are over 520 titles, most of them workbooks. They cover all grade levels and topics, so you might find something useful for your classroom or for your child at home. Thanks to Jonathon Wylie at The Education Technology Blog for spilling the beans about this great sale!

Here’s a tip for making PDF worksheets more accessible for kids with learning or motor disabilities:

You can easily enlarge the page, reduce the number of problems, or eliminate distracting graphics. Just open the full page on your screen and copy the screenshot with your print screen key [PRTSC]. Then paste it into a paint program and crop out distractions or enlarge just the part of the page you need. (Note: If you will be using just a small portion of the page, enlarge that part before you hit Print Screen to maintain a clear image). Print it off and your kids are good to go!

Full screen view of page--I want to give only the problems
in the center of the page on this sample.

1. Zoom in to the portion of the page you want to print
(if you want the full page, check the full page view button)
2. Snap a screen shot [PRTSC]

3. In Paint, select the portion you need and crop to that section.
You have cut out the picture of the screen around it.

4. Open the "Page Setup" menu and choose the page orientation,
centering, and scale to 1 by 1 page.

Here is the final cropped and ready-to-print outcome!
The page has fewer problems to complete, fewer visual
distractions, and larger spaces for the student to write.

[Just an FYI about downloading from Scholastic, you do need to right-click on the Download link and “save target as” if you want to keep a copy on your drive. If you click to download, the file’s save feature may not work (it didn’t for me, anyway). If you have any questions about saving, check out their Help files.]

5 Questions to Ask About Psychological Tests

Standardized psychological tests. To the parents of children with multiple or severe disabilities, the very mention of them causes the hair on the back of our necks to bristle. To teachers who have faith that a child is capable of learning, the reaction is the same (because, good teachers DO want kids to succeed, contrary to some negative myths floating around in a few parent circles). Why do we respond with such gut-level dread to standardized psychological tests?

Because there are none currently available that give kids with severe multiple disabilities a fair shake at demonstrating their current abilities or their potential to learn. Prove me wrong—PLEASE! I want to be wrong on this one.

In fact, I want so badly to be wrong that I wrote to several leaders in special education, ones who contribute to Peter and Pam Wright’s excellent site, Wrightslaw. If you know Wrightslaw, you also know it firmly supports using test data to make correct placement decisions. The consensus in the replies I received from these authorities is that the current standardized psychological tests set up kids who cannot speak or point or write for certain failure.

The purpose of standardized pyschological tests is to compare how a child is functioning with other children under the same set of circumstances (which, obviously, will be different depending on the environment, teacher, etc. But the goal is to make the circumstances as standard as possible). Then those numbers are analyzed through the same filter as is used for all the other children taking the test. If either the way the test is administered or the way the numbers are interpreted is modified, the scores are no longer standardized. But what if your child isn't standard?

There are instances (and modifications…keep reading) when information from the tests might be helpful. If you are asked for permission to test your child with severe or multiple disabilities, here are some important questions to ask before granting that permission:

1) What is the purpose of having my child take this test?

How will the information and/or scores be used? Will it be the sole determination of my child’s placement or program (um, no thank you)? Will it be considered in the context of a variety of information, such as classroom assessments, data on classroom performance, teacher observation?

2) Has my child been taught the skills this test measures?

It is only fair to give an academic test after participation in an academic program. Most standardized tests are academic. Does your child’s classroom teach academics? Sadly, many “life skills” classrooms do not. To ask your child to demonstrate things he has not been taught is degrading, setting him up for sure failure, and plain old wrong.

3) Can my child take the test as it was written and standardized?

Does my child read/write/speak/point proficiently enough to respond to the questions? If not, the test cannot provide an adequate measure of your child’s abilities or knowledge. It simply measures the limitations in his ability to respond. This information could be obtained in simpler, gentler ways without stigmatizing your child.

4) Will the test be modified? How?

Ask to be shown.

To be considered “standardized,” psychological tests are required to be given according to a strict protocol—no deviations. This often means children are expected to work for specific lengths of time but no longer, to respond in specific ways, with directions that may not be repeated, and without having questions clarified. Many of our kids are not capable of working in these conditions.

Modifying the way a child takes a test renders standardization—and scores—useless. We may still gain important insights into the child’s learning strategies by looking at the modifications and the way the child responded to them. However, the scores become invalid and should never be used “against” the child.

I have had to give standardized tests in non-standard ways. What the parents and I look over together is how the child has done with the modifications. For example, if a child cannot speak to read a sight word, can he identify the word out of a group of closely spelled foils? The skill is not identical, but his corrects and errors give insights into his sight word knowledge. They do NOT give a score by which to compare him against other children in the standardizing pool, however.

5) Can the staff show how this test provides my child a reasonable and fair way to demonstrate his/her knowledge?

If you are uncomfortable with the idea of having your child tested with standard psychological tests that are now available, ask this question in a kind, honestly-seeking-an-answer way.

We have had to do this for our daughter, whose multiple disabilities set her far apart from any groups of students that these tests were standardized against. When the school staff realizes that they can’t show us how this test is either reasonable or fair to her, they back down. They realize that there are better measures for her that demonstrate her skills and deficits…ways that are more accurate and more dignified for her.

If there are new tests to the market that do give non-verbal, severely motor-impaired kids a fair shot at standardized feedback about their learning, PLEASE do tell us all!

(Clip art licensed from the Clip Art Gallery on DiscoverySchool.com)

Why Does God Allow Suffering?

Why does God allow suffering?

As parents of children with special needs, it’s an in-your-face question that we wrestle with. It’s hard to ignore. Regardless of the issues our kids face, we ache to watch them suffer. If they must struggle, we’d like to at least understand why.

It’s such a huge question. Theologians have struggled with it for centuries. I’m not going to come up with any earth-shattering insights…I just bumble along like everyone else.

I’ve certainly asked why a million times. Why would God allow an innocent child to suffer pain? Why would He allow my baby to suffer?

I’ve asked a thousand variations…why would He allow my child to be robbed of speech? Of her ability to chew? Or to use her hands? Or to walk? Why must she hurt? Why must she have seizures? It isn’t the medical explanations I’m talking about, it’s the soul-gripping why.

I don’t have the answer. But when I quit focusing on the question of why, only then am I able to see tiny bits of the puzzle more clearly.

Maybe it’s just me; maybe it’s more universal than that. Maybe you see yourself in this too?

The problem with why is that it centers my attention on the hurts, on the worries, on the things that have gone wrong. I get so caught up in the problem of suffering that I can’t see past it. When I hang on tightly to my obsession with why, I can’t let go of it to grab God’s hand.

When our daughter rapidly lost her early skills and she experienced pain that we couldn’t identify at that point, it was terribly hard for me to let go of the question of why God would allow this. I couldn’t see past the crisis to the fact that He still held us in the palm of His hand.

But God was faithful to His word. He did (and still does!) hold us in His hand through all the hard times, just as He promises throughout the Psalms and Isaiah in the Old Testament (I was going to list some specific references, but there are so many. If you don’t have a concordance to look them up, you can do a search for "hold me in your hand" through NETBible.org).

I just had to shift my sites from the desire for an explanation of why the Lord would allow our daughter to suffer…to the trust in Him to hold us through it.

Taking my eyes off the problem of understanding why—something we may never know anyway—allowed me to see some of the blessings that have come from our situation. I would not have noticed them if my focus stayed on the question.

--our extended family has grown closer

--the overwhelming majority of teachers who have worked with our daughter say she has taught them more about teaching than anything or anyone else

--we’ve made dear friends in this circle of disability

--we’ve received practical support (very tough for me) and been able to pass it on to other families…

--I’ve seen growth in my own character (slow, but coming): advocacy, acceptance, better calm under pressure, less easily embarassed

--I’m more aware of areas I need to grow: patience, forbearing, grace, releasing control

--problem-solving has become a standard practice for our family

--we’re taking life a bit slower and savoring each day as it comes

To be quite honest, I hadn’t thought about the question of why in quite a long while. Memories of letting go of that why question came this morning when my alarm wakened me with Natalie Grant’s song, Held. In it, she sings of a young mother’s grief over the death of her sick infant. The words remind us that though there is no explanation when our world falls apart, the Lord faithfully holds us. If you don’t know the song, the words are below. You can hear Natalie Grant sing it here (but caution, have Kleenex handy. It gets me every time!).

Maybe it is okay that we never know why in this lifetime. God has His own reasons for allowing suffering. Surely they are bigger than the little pieces of the puzzle we catch glimpses of every now and then.

But we are held in the palm of God’s hand, and that’s more than enough.

Be blessed in the palm of His hand today.

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HELD by Natalie Grant

Two months is too little
They let him go
They had no sudden healing
To think that providence
Would take a child from his mother
While she prays, is appalling
Who told us we'd be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
Who have died to live, it's unfair
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
This hand is bitterness
We want to taste it and
Let the hatred numb our sorrows
The wise hand opens slowly
To lilies of the valley and tomorrow
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
If hope if born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our savior
This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
[Repeat Chorus]

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You might also want to look at Finding Comfort in Psalm 139

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