Tagged: inclusion

4

Dash of Hope with a Sprinkle of Wisdom

I recently got a dash of hope, actually it was a huge dose but it came in the form of a boy named Dash, who runs quickly in many directions simultaneously, and his sweet sister Lara. These are Aidan’s little cousins who recently met him for the first time. They intuitively recognized two things that I’ve basically made a second career out of telling people: Aidan is different but he’d love for you to talk...

10

Sticks and Stones and Other Bogus

We all know how it goes and we all know it’s bogus…words can hurt us deeply. Being Aidan’s mom has introduced me to the power of words in a new way. I’ve had to learn medical jargon; I’ve become sensitive to the word “retard”; I’ve learned that labels are really doors to services. And yes, I’ve heard the trite, unhelpful remarks, ‘God doesn’t give you more than you can handle.” “Everything happens for a reason.”...

2

Seven Snippets

— 1 — This was church camp or VBS week for me where I get to jump around and sing and have a ridiculous amount of fun with the kids. It’s my favorite week of the summer because children know how to experience unfiltered joy. — 2 — I also got to talk about critter pee (because camp is best when it’s a little bit gross), rock the sprinkler dance move, and have a near...

7

Getting Naked at Church

I may love skinny dipping more than the average person, but at church I’m all about blending in. This year the wave-making mama in me collided with the quiet pew sitter. As the mom of a child with a significant developmental disability, I’m comfortable making you a little bit uncomfortable. I have no problem commenting on accessibility, or offering suggestions about how to talk to Aidan (just start with “hi”), or allowing him to lean...

5

Be The Change

So Gandi tells us to “Be the change that you wish to see in the world.” Ok, I can get on board with that, but what if you’re busy or exhausted or discouraged? What if you’re already making change because in the regular course of raising a child with a disability you’ve made noise in the education system, you’ve argued considerably with insurance, and you’ve taken the time to educate medical professionals? What if, among other...

6

Soul Food

Music feeds the soul. Indeed, it even changes our brains.  That’s the reason why some nursing homes play music from days gone by, transporting the residents back to a time their bodies were young, their minds were free and all things were possible. Music is healing. Music also forms the soundtracks of our most significant moments. Tucked away in some box in storage is your angsty teenage breakup mix (thank-you Melissa Ethridge) and your I’m...

8

Janea

Meet Janea. She blogs here about raising twins, one of whom has CP. To see her son Kader using a very cool walker, check out this post. I’m happy to have Janea here today to share her thoughts on community. I felt a mixture of emotions when I received Heather’s invitation to guest post about “building community” on her blog.  However, the invitation is a way of building community and it is hard to say...

6

“I Love You Daddy”

Words every parent longs to hear, and most parents will as soon as their kids learn to talk. Maya’s dad heard those very words recently. What makes that so remarkable is that Maya is non-verbal; like my son Aidan, she doesn’t speak. Maya uses a speech app on her iPad called Speak for Yourself (SFY). Soon, though, she may lose her voice altogether. When the iPad came out, we all saw the youtube videos of...

6

A Little Church and State Mix Up

Meet Talley, LICSW. She’s a shaker and a mover. Talley is a friend from my church who also married into a most wonderful family that I know from my younger days. Talley gets things done. I am always humored by the little snippets that pop up every once in a while about the separation of “Church” and “State”.  I am particularly fond of the one that goes a little something like this: “prayer will always...

1

An Invitation to Community

It was Shasta’s story here that gave me the idea to share stories about community. I love her blog and her novella, and I’ve ordered her new children’s book. No one really likes to ask for help. I know I didn’t when we raised money for a van. The thing is, when we don’t ask for help, we deprive others of sharing in our lives. So here is a great opportunity to be the community...