great reads on the web - april 6, 2011

While I have a list of 15-20 blog posts that I'm excited to be writing in the near future, I first want to pause to point out some phenomenal ones written by some incredibly talented people. Many of them are related to autism because this is Autism Awareness Month, and I think each one is 100% worth reading. (That's why I changed my usual title for this sort of post from "good reads" to "great reads." Because these are fantastic posts by some folks I truly respect.)

First, Amy Fenton Lee at The Inclusive Church has written an insightful series titled "5 Things to Know about the Mother of a Child with Autism." I am sometimes hesitant about recommending a resource about parents of children with a disability that isn't written by a parent of a child with a disability, but Amy has spent countless hours interviewing mothers, and the response to this series has been outstanding (deservedly so!). Of course, every mother - just like every child - is different, so these might not apply universally, so please pay attention to Amy's note about that on the first post in the series. Without further ado,

• Part 1: She may feel relief upon the receipt of an autism spectrum disorder (ASD) diagnosis for her child.
• Part 2:  She may experience the conflicting emotions of grief and hope.
• Part 3:  She fears exclusion.
• Part 4:  She needs your respect, not your opinion or advice.
• Part 5: She values action over empathy.

Katie Wetherbee has written two great posts this week about welcoming families with a child with an autism spectrum disorder. This one today describes some ways that the Philadelphia International Airport is proactively accommodating families affected by autism and what we, as the church, can learn from it. Recently at our church we did a Saturday walk-through of our first-grade Bible day rally (which was held the following day) with a child with Down syndrome, similar to what Katie suggests here, so please keep in mind that this sort of previewing of church activities can be helpful for kids with other special needs as well!

And this post from Katie provides great pointers for preparing your church to be a welcoming place for children with autism. (And might I add that Katie is one of the kindest online friends I've met? 'Cause she is.)

And this post from John Knight isn't autism-specific but it is a good reminder that God equips those He calls to special needs ministry rather than simply calling those who are already equipped. (And while I am incredibly humbled that he shared some writing from this blog there, that's not why I'm recommending it!)

So click through and read these great posts! You won't be disappointed. And, assuming the pesky head cold I've been fighting calms down by tomorrow, you can be expecting daily posts here for the next couple of weeks.

funny faces for difficult days

One of the blessings of our family is that laughter isn't an option. It's just part of life.

For example, look at the pride in these two faces as they headed to Crazy Tie Night at AWANA a couple weeks ago.

Or consider Jocelyn's major concerns about heaven:

1. It will be too bright, and she won't be able to sleep because it never gets dark. And then she's be cranky and cry a lot. {Yes, we've tried to explain that she won't need sleep. Her response? "But I like sleep, and even if I don't need it, I will very much miss it."}
2. She will have to have a new body, and she really, really, really likes the one she has. I kid you not that it took about 45 minutes to calm her down when she learned that she wouldn't get to keep the body she has now. {And if you've read much of anything over here, you know that I'm psyched about the new body thing. A chance to discard this worn, broken flesh with eroded joints, dead thyroid gland, and ineffective liver in exchange for a defect-free model? Yes, please!}

And can you look at this without a smile?

Or consider how Robbie managed to wear this much of his pizza without a smirk?

 
And this extends to adoptive families as well, like the family of my high school youth leader who welcomes us into their home, both the weekend of the picture below and this past weekend as they conveniently live less than 10 minutes from the site of the conference I attended. We can't spend time with them without laughing, and how sweet that time can be!

And while this last picture doesn't make me laugh, it does bring a smile to my face as I see this sweet image from our dinner Bible-reading time. How I love the leadership of my godly husband!

A joyful heart is good medicine,
but a crushed spirit dries up the bones.

{Proverbs 17:22, ESV}

So thankful for the blessings God has placed in my life to bring joy to my heart!

one of those days

I like to make cheerful posts. I like to be able to post about remission and other marvelous topics. I like to put up silly pictures and anecdotes about life with a zany husband and two unpredictable little ones.

But I also like to be real, so this post isn't going to be about any of that.

Well, except remission. However, I'll be adding the word "not" so that makes it a downer too.

Today:

• I scheduled a liver ultrasound for Wednesday. Two sets of labs have shown that my liver isn't very happy right now and that it's pretty surprising that I'm not looking yellowish (and this is after the liver failure issues I had in the summer/fall, which now the docs think might not be related to the medication we stopped back then). We don't think this is related to current medications, so if anything comes of it, it's more likely that we have a whole new condition that we're dealing with. 
• Two finger joints are now red and painful and swollen and stiff. Yep, that rheumatoid arthritis remission I blogged about? It's not here right now, though I'm hopeful that it'll come back once I'm not sick anymore.
• I woke up with a sore throat and runny nose. Might be allergies, might be tonsillitis. I won't know for a day or two, probably. Regardless of the root, I just don't feel good. (And, to explain the last sentence in the previous bullet point, my arthritis is autoimmune in nature, so my immune system thinks that the lining of my joints need to be attacked. Whenever I'm sick, my immune system has to step up its performance to fight off the illness, which is a good thing...but that also means that the dysfunction in my immune system steps up too and wreaks more havoc on my joints.)
• And precious, dear friends of ours found out today that their third child died sometime in the last two weeks and that her body will be miscarrying this long-awaited child soon. This, after their first child also passed away at this point in pregnancy.

It just hasn't been a good day.

In Jolene Philo's session at the special needs ministry conference I was at this weekend, she talked about ways we can support families as they accept grief and battle guilt when the dreams they once had for their child are changed through disability, illness, or death. One of the sweet points she made is that we - as a culture and in the church - aren't comfortable with allowing people to be sad.

And we need to get over that.

I am sad right now, and I'm okay with that. Our friends are sad right now, and I would have some very strong words for anyone who dares to say that their sorrow is wrong. (I'm not joking, girl. If you get that sort of response from anyone, you let me know. I'll take care of it.)

The words below are from Angie Smith's amazing, phenomenal book, I Will Carry You, about the pregnancy and death of their little girl Audrey. This passage from the book (which I reviewed here) is about John 11:35 (which, as the shortest verse in the Bible, says “Jesus wept”).

I want to share a beautiful distinction I came upon months after Audrey's death as I poured over these verses. At first glance it appears that Jesus, May, and Martha were sobbing together, but the original language of the text reveals that while Jesus was weeping (dakryo), the women were wailing (klaio). While Mary and Martha were crying out in agony over the loss of their brother, their tears moved Jesus, and He began to weep. This is the only occurrence of dakryo in the entire New Testament. He isn't crying over the death of Lazarus but rather the hurt He is experiencing with people He loves dearly. He isn't crying because the situation is hopeless, but because He is an empathetic God.

He knows that in a few moments Lazarus will walk out of the tomb.

He also knows they can't see that hope.

And neither can we.

There is a difference in despair and deep sadness over the time that will pass until we can see her again. It is a conscious, daily choice to experience dakryo, the sadness that allows one to grieve with the expectation of redemption.

 My heart isn't klaio wailing right now. It's dakryo grieving, knowing that God's promises are true but that the pain is still real. It's a matter of knowing that a day will come when pain and death are no more and knowing that today isn't that day.

Teaching lessons for all learners

When I was teaching special education, the most useful professional development session I went to was one that brought together Understanding By Design principles with Differentiated Instruction. You don't have to know anything about those to read on; I just want to be clear that the basic concept here is not my own but rather drawn from educational literature.

(That said, I've never seen it applied to ministry settings, so while the basic content isn't unique, the application of it may be.)

As you plan each lesson/unit/year, you can group content into these categories:

1. The most important thing: In other words, if the kids in your ministry left this Sunday morning having learned only one thing, what would you want it to be? What would be the perfect answer you'd like for kids to be able to give when mom or dad asks, "What did you learn in class today?" (That's a micro application, but you can also think about from a macro - big picture - level too, asking yourself what one thing you want kids to know at the end of the year or once they leave your ministry, such as transitioning from children's to middle school ministry.) You could consider this to be the "must learn" point in your teaching.
2. Other important stuff: This is the second tier. If your kids (or adults!) have grasped the most important thing, what else would you like them to know and understand and apply in their lives beyond that?  You could consider this stuff to be the "should learn" points in your teaching.
3. Helpful stuff: This is the third tier. If the most important thing and the other important stuff are understood, then what else is in the lesson that or story that could be helpful? You could consider this stuff to be the "nice to learn" points in your teaching.
4. Non-essentials: I didn't include this in my image, but it would be in the white space outside of the ovals. It's good to be mindful that there could be things in your lesson that just don't matter. If, for example, you use a Veggie Tales clip, does it matter if your kids can tell you whether or not Junior Asparagus made an appearance? (Not really.)

In other words, if you only teach one thing on Sunday, you'll want it to be the green stuff from the picture above. Then next priority would be the yellow stuff. Then, after that, you can be concerned with the orange items. If you run out of time or if you have fewer teachers than planned, you can prioritize the green thing and even scrap the orange stuff and maybe even the yellow (especially because a point that is merely helpful in one lesson could be a more important point in a future lesson).

Another way to think about this is that each week you'll have some kids who understand the green and the yellow and the orange, some who just understand the green and the yellow, and some who only grasp the green. (And, let's be honest, some weeks there are kids who don't get any of that and just have a good time - or even a not-so-good time.) If you know which point is your most important thing, though, you've clarified your purpose and prioritized the content you'll be teaching that day.

 By now, you may be wondering, but how does this apply to special needs ministry?

If an individual with special needs has intellectual limitations or behaviors that make it challenging to remain focused for the entire lesson, it's good to be able to prioritize your instruction. If only one thing gets taught this week, do you want it to be one of the points from the helpful stuff? No! You want to aim for the meaty green stuff in the image above, the most important thing.

But what if the child's disability makes it difficult for him/her to grasp the most important thing each Sunday? That's where the macro-view I mentioned earlier comes in: if you know what the most important thing for the year is or what the most important thing for your ministry as a whole is, then that is what you want to stress, week after week, even if each Sunday's most important thing isn't always understood.

what does that look like?

As I've shared before, we don't have a self-contained class for children or students with special needs at our church. We're not absolutely opposed to that, but right now it's working well to include our kids with special needs in existing classes, often with a one-on-one buddy for support. (We do, however, have a class of about 15-20 adults with disabilities that is separate from our other adult classes, because they wanted and needed a class of their own in which the Gospel could be shared and discipleship could happen in a meaningful way for each individual.)

In one of our classes, we have a boy with Down syndrome who has a very short attention span; let's call him Luke for the sake of this example. His one-on-one buddy - we'll call her Jessica - has a copy of the curriculum (which, by the way, is hugely important - even if buddies aren't teaching the lessons, they need to know what will be taught). Because Jessica knows what is being taught each week, she can reinforce it and, if Luke isn't engaged with the rest of the class, she can work on driving home that one most important thing while they are in another part of the classroom.

It does happen from time to time that the lesson changes or that Jessica or other buddies don't get a chance to see the lesson before Sunday. In that case, Jessica can ask the volunteer teaching the lesson: What's the most important takeaway from today's story for our students? Even teachers who don't think about their lessons in the framework of the image above can answer that kind of direct question, and then Jessica knows what she'll focus on if she and Luke aren't actively involved in the teaching portion of class.

~+~
Because this works for us, we don't use a curriculum designed for children or students with special needs. I will post a list of curricula I've seen around, but I can't really recommend any, for the sole reasons that I don't recommend resources I haven't used. For our adult class, we use Access from Lifeway; you can find a sneak peek of it here as well as the glance at Special Buddies, their children's curriculum for kids with special needs (the Access sample is at the bottom of the list titled "Bible Studies for Life" and Special Buddies at the bottom of "Bible Teaching for Kids"). They also have great downloads here.

And while this post doesn't relate to it, I had a fantastic time and gained valuable resources at the Accessibility Summit conference this weekend. I'll have several upcoming posts highlighting content or resources from that sweet time in DC.

modifying for the individual not the disability

Yes, it's helpful to know about autism if you have an individual with autism in your ministry. (And I would add, given the increase in prevalence of autism spectrum disorders in recent history, you should probably go ahead and educate yourself about those disorders even if you don't have anyone with autism at your church yet.)

However, every person is different. Every individual is uniquely created by our creative God. You wouldn't expect every 35-year-old woman at your church to act in the same way, or every 5-year-old girl, or every teenager. Likewise, it doesn't make sense to expect every child with special needs to act the same or every child with Down syndrome to need the same support on Sunday morning.

Special needs ministry isn't about the disability. It's about the person and the family.

If you want to minister to and with people with special needs, I don't suggest that you study disabilities first.
Study people instead.

Become a student of your families. Ask questions about strengths and weaknesses, about what the person does and doesn't respond well to. Don't make assumptions based on what you know about the disability; learn all you can about the person. It is helpful to develop an intake form to record specific information; here's a post from The Inclusive church blog about what you might want to include on that form.

And never forget that you can learn as much from the individual with special needs as you can from anyone else. If you're talking to the whole family, do not talk to the parents as if the child does not exist or as if he/she is not present. Don't just learn about the people with special needs in your church; learn from them.

There are no shortcuts, no "if this disability is X, then do Y" formulas. It's not as easy as that.

But, honestly, there aren't any formulas in ministry. All of the books and methods and strategies out there recommending formulaic ministry are missing one truth: Jesus didn't use formulas. He loved people.

And He still does.