Watching my daughter with Down syndrome “get it.”

This little light of mine …

In 2009, we adopted our youngest daughter with Down syndrome, Evangeline, from Ukraine.

“Why do you want to adopt her?” I was asked one bright, humid afternoon in the orphanage yard outside of Kiev.

The worker looked me square in the eyes. Her words knocked over my soul. That morning, I blinked back tears while holding the worker’s gaze, and squeezed Evangeline to myself.

Don’t worry, baby. We’ll show ’em. We’ll show all of them. You are a light.

I’m going to let it shine …

Right away, it was apparent that Evangeline’s cognitive delays due to her extra chromosome were more severe than our biological daughter Polly’s, who was waiting for us with grandparents back home in the States during the adoption.

But it made sense.

Polly had early intervention from nine weeks on.

Evangeline was abandoned at birth, and went in and out of different peoples’ hands at the orphanage.

Polly had been showered with love.

Evangeline probably spent most hours in her formative years alone.

This little light of mine …

We’ve now had Evangeline for over three years.

She’s had speech, occupational, and physical therapy. We’ve signed with her, and attempted picture communication with her in the past.

But cognitively, specifically in the area of communication, she hasn’t made a whole lot of progress.

Emotional changes have been huge, and celebrated, things like seeking comfort from mom and dad, playing with sisters, enjoying school, and church, and our new dog Scout.

But as far as gaining communication skills, Evangeline’s little light has been less than a flicker here and there.

I’m going to let it shine …

Evie’s lack of communication frustrates and saddens me because I WANT to see her light shine in the area of communication.

To me, she already shines because she is my daughter and I am her mom.

But I want to know her thoughts. I want her to be able to communicate with me, with her sisters, with Sergei, with the world.

This little light of mine … 

We’ve recently started Evangeline with a new speech therapist outside of school.

Last Thursday when she came, she brought PECS with her (Picture Exchange Communication System), a fancy term for a Velcro board, and laminated pictures of things that will motivate communication with a child.

I was nervous. I was afraid Evangeline’s light wouldn’t flicker. Could either of us, my daughter or I, handle more disappointment?

I’m going to let it shine …

“We’ll start slow by picking one thing Evie really likes,” her therapist explained. I got some chocolate pudding and sat myself down crossed legged in front of Evie, her therapist sitting behind her to guide her hand.

“Hold the pudding in one hand, place the PECS book in front of you on the floor. As soon as she reaches for the pudding, guide her hand to the picture and help her pull it off. As she is reaching to give the picture to you, open your free hand. Say 2 words and show her the PECS picture (“my pudding,” “yummy pudding,” etc.).”

I took a breath. This was going to be hard. And I was afraid it wouldn’t go well.

“Now, realize, this might take a while. Usually kids need the reminder repeatedly to reach for the picture instead of the object they want. Then we may go to tapping her hand, touching her elbow, or giving verbal cues. It takes time, but that doesn’t mean Evie won’t get it.”

We started. Evangeline was jazzed about the treat, and at first, accommodated the picture for the reward of a spoonful of chocolate pudding.

After three or four offers of the pudding: her reaching for it, guiding her hand to the picture instead of the spoon, helping her pull it off and handing it to me …

She got it!

EVIE GOT IT!

I’d say, “Evie do you want pudding?” and she’d then, just after 10 minutes reach for the PECS picture, pull it off and hand it to me all by herself.

What a moment.

The light, that I know is there, was there, will be there, in my daughter shone brightly.

Evangeline was proud.

Her therapist grinned.

I bawled, and cheered, and thanked God for pudding.

Who knows what this will mean in the long run, but I’m taking as I see it.

A little girls’ light bulb glowing a bit brighter.

 Let it shine, let it shine, let it shine!