Wednesday, July 29, 2015

Inclusion Matters: A Big, Public Thank You.

Google just failed me.  I have seen statistics about the percentage of special needs families who feel unwelcome in church, and it's a big percentage, but I can't find it right now.

But I know a lot of people who stopped going to church because of their child's needs.

Public schools, sometimes criticized by the greater church community, are legally obligated to include our children in the least restrictive environment, even if our kids have big medical or behavioral needs.

Churches, called to serve all people, certainly don't have to include kids like Ellie.  Some do.  Some don't.

Here's an example.  A policy can state that child must be potty trained to attend certain events.  But some kids require extra time for potty training due to low tone, low sensory awareness, poor motor skills, and being on medication which can cause some.... issues.

That policy might exclude a lot of kids with disabilities.  So can lots of other policies, written or unwritten, that make it a challenge for kids with disabilities to feel included.

So here is my big, public THANK YOU to our church.

The only solo picture I have of Ellie from the week.  I don't have photo releases for the other kids.


I've never been made to feel like my kid didn't belong in Vacation Bible School.
I never felt like it was "my job" to help my kid exclusively, and I did feel like it was a team effort.
I never felt like Ellie was anything less than a valued child in our community.

That's how it should be.

Ellie has been singing songs from Vacation Bible School (VBS) nonstop since last Tuesday.
Her theology isn't always great, my favorite being "Jesus is at work FOR us" (instead of through us).

She stood onstage with her friends while they sang at church on Sunday, and while she didn't sing all the songs, she stayed more or less with the group and was included.

Truthfully, this shouldn't be news.  The church should be the most inclusive and safe place I could bring my daughter, but I know from other parents that isn't always the case.  Jesus looked at people with disabilities with compassion and viewed them as valuable.  My child's inclusion in church and religious education shouldn't be something special, but it's something for which I am grateful since not every child gets Ellie's overwhelmingly positive church experience.

So this is a thank you to our church community for including a kid who might be excluded somewhere else.  Thanks for doing the right thing and the biblical thing.  Thanks for loving Ellie.
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Tuesday, July 28, 2015

30/52.

In the coming weeks, you'll be seeing a fun series of photos that were taken by Jessica Mellon of Ellie and me.

I did manage to take a few of Ellie myself, and I'm also sharing a picture of me that is NOT a selfie!  What?  Few of those exist.





Linking up at Practising Simplicity.
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Tuesday, July 21, 2015

She'll Never....

I have a confession.  When I got Ellie's Down syndrome diagnosis, I thought a lot of, "She'll never..."

She might never drive. (So what?  We live in an urban area with public transit.)
She'll never be a doctor. (Um, neither will I.)
She'll never be a model. (Um, neither will I.)

About that last one.

Ellie was on the local Down syndrome calendar as an infant and is on the cover of a book about speech and language for kids with Down syndrome.

And now, she's modeling for The Crazy Kukla Boutique.  I don't really care if Ellie is a model.  But I care that a "never" was replaced by a "why not?"




Ellie's value isn't in modeling or looking cute or driving or talking or being a doctor.  Ellie's value is in being a human.  Ellie's value is in loving people and being loved.  But sometimes, it's really nice to remember the "nevers" and realize those were a list of my fears, not a list of real restrictions.
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Saturday, July 18, 2015

29/52.

All I have to say about this week is that there's something fun in the works between my photography business and The Crazy Kukla Boutique, all in the name of #ChangingTheFaceOfBeauty.


Linked up at Practising Simplicity.
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Friday, July 17, 2015

When Ellie Was a Baby.

In order to prepare for baby sister, we've been talking a lot about when Ellie was a baby herself.  We've also been talking about the various medical procedures she had as a baby.

I'll let Ellie speak for herself here.
A video posted by Megan Landmeier (@meganlando) on

A video posted by Megan Landmeier (@meganlando) on
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Wednesday, July 15, 2015

28/52.

I had a photo session this week with two lovely girls in their Indian clothes.  Their mom invited Ellie along to dress up, because there's nothing Ellie loves more than pink and purple and sparkles.   I took a second between shots to snag this one of Ellie all dressed up.  The whole way home, she said, "We eat dinner and I wear a skirt.  Purple.  Pink and blue."  (I didn't get a photo of Ellie dressed in the purple outfit, but I assure you, she was adorable!)

Linking up over at Practising Simplicity.  Also, this is just a reminder of how much I love my community here and our friends.  This shoot was a blast!

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Tuesday, July 14, 2015

Another Medical Post: The Teeth Doctor

I recently posted about Ellie's experience with a Holter monitor.  Well, we are back today with more medical information, following a trip to the dentist.  Here's a little preview from Ellie.
A video posted by Megan Landmeier (@meganlando) on
A quick search of my own blog showed me that I never posted about Ellie's first dental visit last year. I don't think I wanted to share that with the world.  There were a lot of tears, some wrestling, and an attempt to lock herself in the bathroom rather than return to the dentist.

This year we had a much better experience.  Ellie was fascinated by the idea of a teeth doctor, since she also has a heart doctor, tummy doctor, eye doctor, chromosome doctor, and general Ellie doctor.  She also wanted to know if she can have an eyebrow doctor.

We talked a lot about what to expect.  Although I did this last time we went to the dentist, Ellie was much more engaged in our conversation this year.  She wanted to know if the dentist brushes hair.  (No, just teeth.)

She fell asleep between gymnastics and the dentist, but woke up and was happy to enter the office and play with Legos.  She fed a giraffe to a Lego dinosaur, made friends with the dental hygienists, and had a great time.  When she walked back to the dental chair, she chose to sit like a big girl.  Although a team was still required for hand holding, Ellie didn't fight too much until the x-rays.


A photo posted by Megan Landmeier (@meganlando) on
I admit, I had fairly low expectations, but Ellie has been calm during medical procedures lately, with the exception of the Holter monitor.   She was "age appropriate," according to the staff.  She wore her protective eyewear, and in the end, she received a rubber ducky and a toy mermaid for her troubles.

Huge progress, Ellie!  We are proud of you.

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