* Today’s post is sponsored by The Cleveland Clinic*
Today was a big day for our little girl. Karolina’s first day of school!
This is her second year riding the bus and attending an all day preschool. She has the same teacher as last year (an answer to prayer!) and this time around I think we both feel a lot less apprehensive about the whole endeavor. We know what to expect, and Karolina is a girl who loooves routine so I know she’ll soon feel right at home with her familiar schedule.
Since I’m already reflecting on the last year and hopes for the year ahead, I thought this would also be a good time to do a little status update. Here’s a list of most commonly asked questions and general stats:
Name: Karolina Elizabeth
Weight: 34 lbs
Does she talk?: She is still considered nonverbal. Karolina does have a vocabulary of between 10-15 words but doesn’t always use them in a functional way.
Does she understand instructions/conversation?: I’d like to think so! Her physical response does not often indicate this is the case, but I believe there is a cognitive recognition of language, even if it’s partial.
Is she learning? Absolutely. The progress is slow, but quantifiable. She’s beginning to sign more to communicate her needs: “more,” “all done” and “help.” Very often she will say the word itself as she signs. This is great growth! She’s doing better with fine motor skills (holding a pencil for instance) and is more receptive to sitting with me to read a short book.
What does Karolina enjoy? Her greatest joy is music. She loves to sing. Karolina’s mental jukebox is incredible. Just the other day I heard her humming “Away in a Manger,” a song she hasn’t heard in 8 months! If she hears a melody even one time she can very often mimic it from memory. Music calms her, makes her smile and helps her engage like nothing else can.
Do you worry about her progress? I’m a bit stuck on how to answer this one. The short answer is yes. I cry at least once a week. I love her so much and often feel helpless and frustrated and quite alone and unqualified. That’s the pity-party answer. Yet, I honestly try not to dwell on it, and I think over the last year I’ve made progress there. When a stranger would approach Karolina, it used to trigger a gush of grief and panic that I didn’t know how to handle. Do I pretend she can understand the person (when clearly it’s obvious she’s not going to respond to them)? Do I tell them up front she’s autistic or would that seem like I’m setting her apart because she’s different?
These days, I’m much more pragmatic about it. Thanks to my very sensible hubby who just says “be happy and love her.” Yes. YES! You make it sound so easy there Mr. Bobby McFarren. I countered that optimism by responding with “Yes, but aren’t the one going to the IEP meetings and filling out the milestone charts at the doctor and being confronted with the hard fact that her disability isn’t really improving.” But he’s right. And maybe, so am I. Which is why I’ve never been more grateful that my husband and I are often opposites. 🙂 I think we’ve learned from each other and he’s taught me just to enjoy my daughter and the beautiful person she is today.
What’s the hardest part? Trying to stay on top of everything. In addition to autism, Karolina has other medical issues like digestion problems, seizers and random nosebleeds. All of these are infrequent (thankfully) but very tough to tackle. Most have been ongoing since we brought her home. Here is a literal snapshot of a “day in the life” moment as an example. This was the scene a few weeks ago when I came in to pick her up from her nap:
My apologies for the graphic picture (Karolina was not hurt).
She had obviously had a nosebleed again but because she is nonverbal, I had no idea. It was all over the walls, bedding and Karolina. I was fresh of a victory of keeping her out of her diaper by purchasing overalls, then a new surprise caught me off guard. Lol. Now, one of the things on our “wish list” is a video monitor. Other issues I’m trying to navigate include: fencing. While we love to play outside, she wanders from our property and it’s a constant workout follow behind her and to physically guide her back since she usually doesn’t respond when called. Furthermore, if she were to ever stray (God forbid) I would have no verbal way to locate her because she doesn’t speak. Finally, the bed. She is still in a crib, but needs to transition into a bed for safety purposes (she’s learning how to climb out). I researched adaptive beds and they are thousands of dollars. These beds come with a mesh canopy that would keep her inside yet it’s breathable and easy to zip open. Yet, not all insurances help cover the cost because some consider it “entrapment” (not so, for goodness sake). Oh, the things you learn when you are walking on an unmarked road! I reckon I’ll get pretty good at all of this in a few years, but right now it’s still a bit overwhelming.
The prayers and love for Karolina have been a lifesaving buoy in the middle of this sometimes-wild ocean. In addition to that, I thank God for the good friends that we’ve met through the journey so far. Best of all, I know Karolina is in the hands of a loving God who knows exactly what her future holds
and who loves her very much. And that’s reason to sing!