Monday, September 15, 2014


I brought my camera to our church retreat over the weekend, and I did not get it out of the case.  I took exactly four photos with my iPhone, and three are blurry.

So you're stuck with my words, written in a state of total exhaustion brought on by the first two weeks of kindergarten followed by a great retreat, then an hour at Barnes and Noble trying to finish up lesson plans, and then an attempt at grocery shopping thwarted by a completely full parking lot, followed by actual grocery shopping and lunch food prepping.

I'm tired but thankful for a retreat that focused on rest.

Some little things I want to remember…

Square dancing.  We had a square dance and laughed.  Laughter is so good for our friendships, for our souls, for a certain three year old who was NOT feeling the square dancing but ended up in the back of the gym clapping to her own rhythm.  My soul finds rest in laughter.

Ellie observations.  Looking out at the bay, I asked Ellie to tell me what she saw.  "I see a octopus!"  Her imagination is always busy.

The idea that the sign of maturity is seeing our need for God more.

The need for rest in the midst of a culture that tells us otherwise.

Watching people at church love Ellie for who she is, even if they know nothing about how Down syndrome impacts her.  Noticing a few people who went out of their way to make sure she was included.

Ellie has peace, joy and rest figured out.

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Tuesday, September 9, 2014


I love these eyes.

And do they look tired?  Because she was up before five, so they should.

No photos of my eyes will be shared here until Ellie starts sleeping a bit more.

Photo Challenge Submission 
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Sunday, September 7, 2014

Impulse Control.

Friends, we are tired!  The first week of school always seems to end in exhaustion for kids and teachers alike.  Ellie and I spent Saturday running errands and relaxing, and today we ran more errands, went to church, had a picnic, and went to a park.  We're trying to cram all of our fun and our "to dos" into the weekend since school is wiping us out…. along with very early wake up calls.

Saturday morning at 4:45 am, Ellie informed me, "I love Ms. R___.  I love Ms. M____. (The classroom assistant and teacher.)  Ellie was unhappy when I told her that we don't have school on Saturday.  Then we went for a walk that involved me being told "Wait on the line!  No running!"  I asked if Ellie did that at school.  She smiled at said, "YEEEESSSS!"

Ellie's school year started off well.  Her teacher has only said that Ellie is "busy exploring" which can be translated as "a little out of control," but big transgressions tend to get comments like "Ellie required 3-4 reminders to follow directions today."  (That was the first half of last year.  Maybe she's growing up?)

Even with the exhaustion, we needed a return to routine.  Ellie's life started off fairly routine-free after her NICU stay.  She fed as she was hungry to bulk up for open heart surgery.  But after a whole summer off, I noticed that she missed the routine of school.  And I missed the routine for her.

You see, Ellie sometimes often has trouble listening in group settings. Following directions took a lot of effort last year.  As she gets older, I want her to learn impulse control.  This weekend at Barnes and Noble story time, I was shocked when she listened as well as the other children present.  Ellie attended to most of two stories and drew a picture to encourage the crayons from The Day the Crayons Quit to stick around.

Note: Have you read The Day the Crayons Quit?  If not, you need to.  Right now.  It's fantastic for teaching persuasive writing, character traits, letter writing, and it's such a fun book!

Of course, then we went home and did art.  Every time we drew a face together, as soon as Ellie painstakingly drew ears (a scribble on each side of the head), her eyes would light up and she would scribble on the top of her picture, yelling "CRAZY HAIR!!!"

So about that impulse control?

Sometimes it shows up.  Sometimes, it takes a backseat to drawing crazy blue hair all over art.

Next project?  Learning about teaching impulse control to preschoolers with disabilities.  I'll be seeking out Ellie's old teacher this week to pick her brain, since she conveniently teaches at the school where I work!

How are you, readers?  Are you happy to be back to the routine of fall?  Wishing for a few more weeks of summer?  Any great tips on teaching impulse control?  Leave a comment here or on Facebook and let me know!

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Wednesday, September 3, 2014

Back to School.

Ellie and I are both back at school.

Here's Ellie!

Hope your family is enjoying a great return to routine!  Ellie and I are exhausted but happy.
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Monday, August 25, 2014

Heart Day #3.

I can say with almost 100% certainty that Ellie would not be here without the open heart surgery performed at age 5.5 months.

I'm so thankful for that surgery.

I'm so thankful for our girl.

This summer, she took great care to put sunblock on her "zipper," her open heart surgery scar.

Health didn't come easy or cheap, and three years later, I want to pause to appreciate how far this child has come.

Happy heart day, Ellie!

(And thanks to Matt for these photos.)

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Tuesday, August 19, 2014

Tuesday Phone Dump.

It's been awhile since I did a phone dump post….

I go back to school next week, students (including Ellie) return to school after Labor Day, and we have a fun visitor arriving later today.  Lots of prep work, classes, lesson plans and the like are on my agenda, along with some fun time with our visitor.

Yesterday I laminated a bunch of sight word poems and made five labels for each student's name.  Fall is coming!

How are you closing out summer?
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Thursday, August 14, 2014


Having a child with a disability makes you a little bit tougher, but also a bit more sensitive.

The comparison game can steal joy from a special needs mama, and the comparison game is toughest when comparing your child to others with the same disability.  When Ellie falls behind her typically developing peers, I may be sad for her briefly, but I get over it and she hasn't seemed bothered yet.

But when I try to compare Ellie to other kids with Down syndrome, the results are never good.  Not because she fares poorly (she doesn't) but because there is always someone better at whatever it is I'm comparing.

It starts with…
"That kid with Down syndrome is healthier than my kid."
"That kid is sitting first."

It progresses...
"Oh, that kid with Down syndrome will go on a ride at the fair without a tantrum."
"Oh, that kid with Down syndrome can go up and down stairs easily."
"That kid can walk across the beam."

Many of us in the Down syndrome community try to have some sensitivity when we brag about our kids, knowing that every milestone comes with a lot of hard work, and many of our friends' kids are still working hard to achieve whatever the milestone may be.

I also really don't notice Down syndrome as much as I used to, which may seem odd, given that Ellie's features identifying her extra chromosome are more obvious as she ages.

All of this came into play recently.

I was alone in an elevator with a certain child in a stroller who was being loud.  And uncooperative.

Yep, it was Ellie.

Another mom and grandma, accompanied by a child in a stroller, step onto the elevator.  As we were in Puerto Rico, I told Ellie, "dile hola."  (Say hi.)

Ellie said, "NO!" because she is three and was being uncooperative.

"Does she speak?" asked the mom.

"She never shuts up, unless I tell her what to say!" I laughed.

"Oh, my daughter doesn't have many words."

And as the mom made a weird face and then got out of the elevator in the lobby with her girl, I realized that the girl in the stroller also had Down syndrome and I was a total jerk.

My answer was true.  It was the answer I would give to almost anyone.  But it's a jerk answer to a mom whose child doesn't speak.

How do I know?  Because I've been hurt unintentionally by "Oh, once she starts walking you'll be wishing she took longer" and other comments.

And I probably hurt someone, all because I wasn't paying attention.

So what's the point of sharing this?

I need to slow down and pay attention.  What I said was true, but that didn't make it the best approach.  Maybe, "Yes, she talks."  Because complaining about what your kid does when another kid is working hard to do the same thing is insensitive.  And I know better.
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