“Inchstones”

“Is Lola {blank} yet?”

I get a lot of this question. And I mean a lot.

Is she crawling? Is she sitting? Is she talking?

At first this question kind of stung and I would get very defensive for the sake of my daughter. Now I simply reply with “No she isn’t yet, but this is what she is doing.”

When Lola was diagnosed with cortical visual impairment, I joined a Facebook group called “Thinking Outside the Light-Box: Vision Therapy Support Group” per the advice of my virtual friend, Amanda. It is a place where parents of children with CVI can go to share ideas about vision therapy exercises, equipment or aids that are helpful and most importantly it is a “safe place” where we can openly ask questions and receive answers from parents who actually “get it”. I have found such comfort from the group and I would recommend it for anyone who has a child with a vision impairment.

A few weeks ago someone posted about their child’s “inchstones” and I immediately fell in love with the term. In the developmentally delayed world, large milestones don’t just suddenly happen overnight. It can be a long, drawn out and incredibly difficult task to reach. Take for instance Lola sitting unassisted. She is such a physically strong (and I mean strong!) little girl, but sitting does not come easy to her. Her balance and equilibrium have been altered perhaps by her neurological disorder and while she is so close to sitting alone, that darn equilibrium keeps throwing her off. But Lola hit an inchstone this week. She now puts her elbows down as she falls backwards in an effort to help break her fall. This is huge! Not only does this mean she won’t get as hurt if she falls backwards, but it also means new reflexes are kicking in. This is a good sign as the new reflexes can help diminish the newborn reflexes that she still has. So this inchstone is important. She may not be hitting that “milestone” of sitting by herself, but that inchstone means she is one step closer to getting there.

So while she isn’t crawling, sitting or talking just yet, she has been up to some pretty cool stuff.

She now reaches at everything imaginable. I can’t have anything in my hands without her trying to grab at it. The therapy toys that once were impossible for her to see, she now locks her eyes on them and snags them up as if she never had a vision impairment at all. It’s pretty remarkable for a baby we were told could be classified as “blind” someday.

We have yet to hear more baba’s or dada’s, but she has started to do this little hum when you do it first in other words…she is mimicking sounds. Sometimes if you blow raspberries, she’ll do that too. We are working hard to get those syllables out, but we know she’ll jabber away when she’s ready to.

Lola now laughs and I mean laughs! Rob took a video that I’ll post in a few days. Before we used to get these little giggles, but now she has this hearty laugh as if it is coming straight from her little Buddha belly. It is one of the sweetest sounds I’ve ever heard.

She is also using both hands to play with toys. Before Lola only hit toys like Bam Bam from the Flintstones. And naturally she would do this because she couldn’t see the toy that well. But now that her vision is improving, she’ll use both hands to actually look at the toy while she plays with it. Don’t get me wrong, she still hits all of her toys in hopes to hear a sound, but seeing her actually look at toys is amazing. She is also transferring toys from hand to hand. This is a wonderful coordination technique and she is beginning to master it…well almost. Yesterday she was trying to transfer a toy from her right hand to her left and she dropped it. What did my clever thinking daughter do? She caught the damn toy by using her feet and picked it back up! It was a crazy sight to see! She actually uses her feet for many things. She’ll feel around with them, she’ll try to grab at something with them. It’s quite fascinating to see how creative she gets with her feet.

We’re getting lots of eye contact these days. Yesterday, Lola locked eyes with our client who was sitting across the table from her. Usually eye contact comes when you are close to Lola, but I’ve noticed that she is locking eyes at a further distance. It doesn’t always happen, but wow how those tiny moments can make you feel so good.

So these are our inchstones for the week. They aren’t grandiose milestones, but for a baby who had her development jumbled by some awful seizures and not to mention a rare brain malformation, I’d say she is doing pretty fucking awesome.