Thursday, July 18, 2013

less 'special'?

No one ever sits you down and tells you that your child is now considered special needs.

Or at least no one did with us.

There was no set point where Ray and I looked at one another and together decided, "As of today, Amelia is now considered our special-needs daughter."

It came gradually.

Even after we first learned she was developmentally delayed, I always considered her just "behind," perhaps a wee bit lazy.

As the therapies piled up, she just needed "some extra help."

For me, I think it kind of set in when we found out she couldn't drink liquids.

And then, once she starting having seizures and was diagnosed epileptic, it became a given.

But, at the risk of sounding blasé, it was easy to say, then, that Millie was a special-needs kid. She wasn't walking, wasn't talking and was eating this chalky, gross concoction of thickened milk.

Today, as Millie is confidentially walking with some degree of ease, is signing with confidence, and even talking some (just a little bit at a time), it's harder to accept that term as easily.

Honestly, if it wasn't for her genetic diagnosis and her actually receiving early intervention services from our school district, I don't know if I'd even consider her special needs.

And I know, in my own mind (and heart), that I expect it all to be temporary.

There was a time, not long ago at all, when Ray and I tiptoed together through potentially difficult conversations.

We'd breezily start talking about a planned bathroom model and it would turn into a discussion about our long-term housing plans.

You could hear it in our voices as we realized we were approaching dangerous ground. We'd go from a lighthearted debate about tile colors to talking about "when the kids will be out of the house" and someone's voice would catch, too aware of that silent if.

Talking about the girls' college funds? If.

Retirement planning? Grand-kids? If. If.

That if remains, yes. But as I watched Millie walk about 100 yards today, going from the car to the hospital entrance and down about three hallways, not falling even once, I could feel it dissipate some more.

Things are good. Really good.

(Insert not-so-silent prayer here that they continue down this path...)


On a (somewhat) related note...

I figure I should keep track of where Millie is at in regards to her language.

I know at some point in life I'm going to want to know what she was doing when. So here goes.

In May, after about four months of consistent, steady training, Millie finally caught on to signing.

Her first sign was more.

Then she added help.

Soon, she was proficient at several signs:

Next came cracker.

And then a modified version of music.

Two weeks ago, I met with a therapist who is very familiar with Millie's challenges but we hadn't seen her in a couple of months. She was shocked - pleasantly so - at how well Amelia is doing and how quickly she is catching onto new things.

She recommended that we introduce two new signs a week to continue to both build her vocabulary and challenge her.

So I just randomly chose to introduce dog (note: she knows this as dog, not puppy) and yogurt (which does not apparently, have a "real" ASL sign so we are using this one).

She caught on to those quickly (though she just thumb-sucks for yogurt right now).

We now are working on thank you, mommy, and daddy.

Next up, I believe, will be sister, cat, and outside.

It's been really fun to watch her progression. And, as she's taken to signing, we do here more verbalization as well. Her favorite thing to say is still "Hi Dada!" We also hear "all done" quite often and occasionally I'll get a "Hi Mom-mom."

One of the funnier surprises has been how enthusiastically Lola has picked it all as well. Sometimes, she even signs instead of talking herself. (Which I can't decide if that's a good thing or bad thing?) We'll be playing tickle or throwing her onto the couch and she'll come up signing for more before she can even get the words out.

So yeah, we're having some fun times in the Wesley home.
- Bethany :)


David and Mary Kay said...

She, They, You, all are amazing. The progress when watching from outside has been astonishing at the least! You ALL are doing so well...and we are even picking up singing too. Now THAT is truly amazing!

Love you all.

Anonymous said...

Beautifully written...

Hope I can learn as many signs as Millie:).

Love you so much