Shine... in her own time

I write this with scattered thoughts, my brain in tangent mode and my body more exhausted than usual due to less than an hour of sleep last night thanks to Gracie's latest string of "night parties." Tonight appears to be no different than last and with John on graveyard shift now, there's good reason to expect that the posts on this blog might be a little less intelligible than normal.

Anyway... I am thinking about Gracie... and all that she is doing lately. And, because today she met with her new home hospital teacher and the district program specialist, I am also thinking about all that she is not doing. I don't like doing that. It's hard to explain to someone who has just met her why she doesn't just sign in open conversation even though she has plenty of vocabulary to carry on a short little exchange like Preston does. She has the expressive language, but it's not always something she uses. It's "stuck" in there... a lot. Then, most often when you are least expecting it, it flows out of her like a little river. The same is true when you ask her to complete a task. Sometimes she'll stare at you blankly and, more often than not, the moment you turn your back (or she thinks you're not looking) she does exactly what you've just spent the last umpteen minutes trying to teach. She's always paying attention, she has an amazing memory and yet (what seems to be) the simplest task can be left undone for several lessons and then... she just does it.

For example, we have these colored bean bags that we used to teach Gracie her colors. She has known them for a long time (red, orange, yellow, green, blue, purple, black and brown). But, when you show her the bean bags now and sign, "Gracie, what color is this?" she often stares blankly at you or looks away. While I tend to joke that she's thinking, "Mommy, if you don't know your colors by now, then something is wrong. Aren't you bored with this silly game?" the fact of the matter is that she's actually not responding (some of the time) due to an inability to access her expressive language. (Some of the time she's just ignoring me!) When she's "on," she will sign "color" and then sign the name of the color. A few weeks ago, Preston brought out the bean bags and when I asked Gracie the colors, she quickly breezed through them. Later that same night, the kids were playing with blocks. Gracie picked one up, turned toward me, signed "block," then paused for a moment, signed "color" and then "blue." "Yes," I said and signed (in pure shock at this random burst of unprompted expressive language), "that's a blue block." This went on for a moment, with three more blocks and then she turned away from me and continued picking up blocks (and one stacking cup), signing "color" and then the name of the color. This is the pile I made. She made only two mistakes and corrected herself...

Then, the next day, not a color sign in sight!
Instead, she played herself a little game of (what I now call) "Alphabet Soup." Gracie knows her alphabet. She can sign the whole thing. She has it memorized and will speed ahead of you if you're not signing at that moment's preferred pace. (Other times, like today with the new teacher, she wouldn't even sign "A"... UGH!) Anyway, the kids have magnet letters and we work with them in various ways all the time. This is a bit more abstract than the flashcards and other ABC printed items we use because the letters are able to be manipulated - - flipped over, upside down, etc. and thus, the letter's appearance changes and she has to think about orienting it correctly or must recognize it the way she's holding it. That night, hanging out on the family room floor, she just started picking them up, signing the word "letter" and then naming the letter. I was awestruck. I didn't give her any indication that I was watching her (as once again, her back was turned to me). I just started making a pile and mental notes of the things she was doing. At first I didn't realize that she was signing "letter," I thought she was picking them all up and signing "L"! Silly me! She made a few mistakes... she picked up the "R" by the rounded part upside down and signed "K." Um... yep, that does look like a "K." Smart girl. I didn't want to interrupt her so I made another pile of the "mistakes" and we went over them when her little game ended (to which she paid little attention!).

This is a picture of the "correct" pile, no mistakes here. (I oriented the "M" and "W" the way that she signed them... and would have accepted either label as a correct answer!)

She plays this game often now, but will NEVER let me play with her... I can watch and sit by, but if I try to ask her about a letter, she will stop. Grrrrrrr...

All of this makes me think about the lyrics to a song by Rachel Coleman (co-creator of the "Signing Time" series... a huge hit in our house with kids and parents, alike!). The song is called, "Shine" and it has often played on my internal soundtrack over the years as I've worked with (and thought about) Gracie.

"Sometimes I see you stuck
For such a long time
A daily nothing new
Pretend I don’t mind
With lists of things you’ll never do
Until somehow you do
And you do — you do — you shine"

When Gracie turned three, we knew that her educational placement would have to remain at home, her medical status still too fragile and unpredictable. Additionally, she was incredibly afraid in any indoor environment other than home. It didn't matter where we went - - Nana's, friends' homes, the mall, a small store - - it was all so terrifying... so much so that pushing her limits and forcing these outings on her would often cause her such significant stress that she'd literally become ill for days at a time. Back then, stressers would often trigger her horrible abdominal migraine cycles and she'd be down for the count, functioning in the dark and barely tolerating pedialyte. It was torturous to watch, we were helpless and the scars from those years of unbelievable discomfort are still so fresh - - for all of us.

We wanted so badly to see her in school, making little friends, playing, etc. But that just wasn't in her cards. She has missed so much because of being at home, and yet, that was the only possibility for her at the time. Thankfully, her home-hospital team was tremendous, her nurse, Judy, and John and I worked tirelessly with her. It felt, though, like those years stuck at home, literally housebound, would never end.

"The days and months and years,
they run together
Is it just one day? Or is this forever?
You’ve taught me in your lifetime
More than I’d learned in mine
And you do, you do, you shine"

She is no longer in that place medically or developmentally. She is so willing to try new things and go new places. She still prefers being outdoors... but so do her parents and so do most kids! Developmentally she is miles beyond where she was as she was turning three, and yet, there are days that, until I re-read the measurable accomplishments, I forget how far she has come. Those days are more prevalent this time of year as I prepare again for an IEP... in a new school district with new providers who, while caring deeply (I can already tell), they don't yet "get" her. They don't know that she needs time to process - - more time than the "other" kids who need time to process. They don't know that next month, I will likely be showing them a picture or video of her doing the "thing" that they just couldn't get her to pay attention to all of this month.

"Well, maybe I’m too close to see you clearly
Or is it now my role to simply believe?
You’re just one of those mysteries
That may never be solved in time
But you do — you do — you shine"

I think the other thing that sometimes makes my mind wander is reading about the accomplishments of countless others who are so much younger than Gracie. The ways in which Gracie is affected by CHARGE Syndrome are so vast and, quite frankly, severe, and then as if that in itself isn't enough, she deals with the brain injury, too. Knowing all of this about her, and being completely amazed by how far she has come and continues to go, I still sometimes feel a little sting in my gut when I learn about all of the amazing things all of our friends in CHARGE are doing. Make no mistake, I love reading about them and all that they, too, are constantly overcoming. I am so incredibly proud of them and truly happy for them and rejoice in it all along with their determined, hard-working, endlessly supportive parents. But every once in a while, and especially this time of year, I become more consciously aware of the leaps that many kids are taking beyond my daughter's. I don't dwell on it and having these thoughts does not (IN ANY WAY) mean that I don't completely accept her for who she is. I know that having these feelings is normal. We all want our children to reach the their full potential... whatever that may be for Gracie, I am doing everything I can to help her reach it. The pride I have for her and all that she continues to overcome is beyond description. I believe in her. I believe that now that she will finally be able to go to school regularly that she will continue making great progress. I know that it will take time... and that my job right now is to help her new team understand what I already know so well... Gracie shines, in her own time.

"Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine"