links I'm loving in disability ministry: fake Christians, imperfect vessels, real inclusion, angry kids

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The Realities of Inclusion & Kids With Special Needs
 Inclusion in theory is beautiful and collaborative and harmonious. Inclusion in practice can be messy. Ellen writes about Max's camp experience, "in the end I just wasn't sure how much he'd interacted with other kids—or how inclusive his time there was, other than the fact that he was physically among so-called typical kids."

My thought: We want people with disabilities not just present in the church but also part of the body.
How can we as the church be more than just physically inclusive?

"I now look at kids that are throwing tantrums and know some of them are acting up due to parenting or lack of parenting, but I want you to know some kids are just wired in a way that is not acceptable to society. I know you don’t want your kids to be friends with my son and that hurts but I understand. Maybe just try every now and then to be friends with that mom and kid."

My thought: Kids with angry behaviors may be hard to include in traditional way, for the safety of other kids.
Are we willing to love these families and work to figure out unconventional inclusion for them?

imperfect vessels
This blog series, with 99 Balloons running point, is knocking my socks off. (And, if I'm honest, making me a little nervous about how my post - running on September 11 - will measure up to the rest of the amazing folks included in this project.)

and on a similar note..

"But when people think Christians are fake, I think this is part of the reason why. We tell each other we’re not prone to wander. We act like our days of falling down are forever behind us. And we create environments where no one can be honest. You can’t share your whole life with somebody when the expectation is that you don’t fail."

My thought: When we wear the name "Christian," that should acknowledge that we're not the great ones.
How can we let Christ's light shine through our broken places, be that disability or sin?



tomorrow has to be better

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because today involved...

three shots for my big girl.

a finger prick for her and her brother.

the inhumanity of being taken to the exam room with no dinosaur border on the wall. (the boy was not pleased.)

the need for my big girl to pee into a cup.

my big girl's inability to pee into a cup the first time she tried.

my boy's ability to pee on me when I didn't realize he was trying to pee into the cup, which isn't necessary until he's a couple years older.

my big girl's ability to pee in the cup after I forced her to chug the juice in my bag. (why, yes, I did have college flashbacks. Chug!Chug!Chug!)

my failure as a mom when I accidentally poured part of my daughter's urine specimen on her.

my conversation with our new pediatrician in which we realized we were friends from college. (and during which she might have decided her choice for med school was better than my choices, given that both I and my firstborn were wearing urine.)

all this occurring while holding my littlest one. who has a cold.

(yes, you can feel free to laugh. I would probably chuckle at you if this had been your day.)

oh, how I love them! even after days like today.

my boy's ability that I envy the most

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Sleep.

I'm not a great sleeper, but this guy is.


I was going through old pictures from the past year, many of which had never been posted.


And I realized a common theme in many of my boy's pictures,


Robs loves sleep.


Even if it's in the front seat of a car while we're at a friend's ranch in Texas.


Or, during the same road trip, on the couch of another friend's house.


Or today, while sitting upright next to my bed. (Note the drool on the blanket from one time when he fell over and slept there a moment.)


My dear mother-in-law tells stories of Lee getting tired at the playground, climbing into other people's strollers, and taking a nap. Or falling asleep into his spaghetti.


Yep, I'd say Robbie takes after his daddy.

How about you? Are you like him - able to sleep anywhere - or like me? 
Anything else your kiddo(s) - or a kiddo you love - can do that you wish you could?

my EEG torture {a guest post from Zoe}

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Yesterday, Mom took me to something called an EEG. I didn't know what that meant, except that I had to leave my big brother and big sister at home. I didn't like that part.

Then we got to the doctor, and they did the torture procedure. Here's how I felt about that.


Yeah, it wasn't cool.


We arrived and rode the elevator to the second floor. Then Mom filled out some forms while holding me.

A lady who looked nice came to get us.

We sat in a chair, me on Mommy's lap. The lady who looked nice got out a measuring tape.

As she used it to measure spots on my head and make orange crayon marks on my forehead and scalp, I decided that she might not be nice after all.


Then she put goop on my head, put a little thing Mom said was an "electrode" on the goop, added a tiny piece of gauze, and then slapped on a piece of paper medical tape to keep it in place. (Okay, okay, she didn't really slap it on.)

Then - get this - she did the goop-electrode-gauze-tape thing again. 28 TIMES, for a total of 24 electrodes. (Those four extra applications were thanks to the Tao Kwon Do skills my big sister taught me... the ones I used to tear a few off before she finished, just to show her who was really in control.)

Yes, I'm a little proud of that.


She tried to calm me down with a Barbie movie and an obnoxious animal noises toy. I would have none of it.

Then she - the lady who looked nice but really wasn't - wrapped my whole head in gauze so I couldn't yank any more off.


Why's the picture so dark? Well, because the next thing we did was go to rest on a comfy bed in a room that Mom said looked like it belonged on Pinterest. The lighting wasn't so great in there.

Well, except for when the not-nice lady thought it was a good idea to make several strobe lights go off in my face. (Mom says it was necessary for the test. Something about stimulating seizure activity if I have an undiagnosed disorder. Whatev. It wasn't cool.) The lighting was great during the strobe show. That is, at least every other millisecond or so.

After gooping and electroding and taping and gauzing my head and flashing lights in my face, can you believe that the lady wanted me to calm down and even go to sleep? I fought it. Hard. Screamed for 20 minutes straight. That'll teach her. I wasn't planning to give in to her evil demands just so that her EEGinator could check out my brain, but then Mom sang some songs to me.

And I gave in.


I napped for about 35 minutes and then woke up and cuddled with Mom for 20 minutes. 

I forgot about the junk on my head for a bit, so I thought we were done when that lady came back. She had warm water and a washcloth. Thankfully, the paper kind of medical tape comes off with water so she didn't have to pull my hair (though, evil as she was, she might have enjoyed that), but she still wet me down and took everything off and left me with goopy crazy hair (thus the style in these pictures).


Yeah, I needed my paci after that.


Mom got some smiles out of my back at the car, but I was just humoring her.


Mom smiled some real big smiles today, though, when we got the news that my EEG results were completely normal.

Which I think means that I never have to go through that torture again.

Thank God!

(Note from Shannon: The nurse really was a nice lady, even if Zoe didn't understand why she did what she had to do! From my perspective, the test went just fine... and, of course, we love the results.)