Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Speed bumps

It’s amazing how everything can be going along tickety-boo, just racing along  – then wham, you hit something and everything seems to grind to a halt.

I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing.

Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast stick she’s gumming results in a gag fest and the bits being spit back out.

Sensory? Something physiological? Who knows?

Obi’s been referred for a feeding study to see if they can find an issue or rule anything out. In the meantime, we’re continuing to try and interest her in food and coax some down her throat.

Her other skills have improved rapidly. She’s met all her 8 month milestones but one – both in gross and fine motor skills. With the help of her fab OT she sailed through. But feeding puts us back to the slow crawl of early days.

They were dark days filled with knowing something was up but not knowing what. And a lot of fearing the worst.

My first instinct hasn’t changed much. Now  when I think of all the if/then’s I still start to feel a little panicky. If she doesn’t start eating solids soon, then we’ll need to/she’ll need to…If she has a major sensory issue then…if she has something major like some kind of stenosis that interferes with eating then…

…except I don’t know what any of the ‘then’s’ actually are. Which makes me even more scared.

I had a little moment in the car on Monday, a ‘how are we going to get through this’ tear up moment in which I envisioned all the worst case scenarios when it came to food and eating which made me think of all the appointments which made me think of all work I wasn’t doing as I was rushing off t meet her OT after handing in a permission slip with “unable to volunteer’ checked off for my son’s field trip, which made me think of how I wasn’t able to get groceries as I was late to meet OT, which made me think about her bad eating all over again.

And then I had to pull myself together and think: This is not a crash. Just a speed bump.

If one hits a speed bump then you just work through it and keep moving forward. It’s not a stop sign or even a yield sign. It slows you down then you get going again until the next one.

How many will there be? I have no idea (which also makes me a bit panicky). But I do know, the only thing you can do is tackle them one at time.

At least that’s what I keep telling myself. Just get over one speed bump at a time.