Friday, February 7, 2014


I feel like some may think I sugarcoat our life. I know I am more prone to talk about the great things Olivia is doing and how smart she is and how funny she is.

So, in the spirit of honesty and keeping things ‘real’, I’ll list a few things that others might think of as negative aspects of a child with 5p- syndrome. Forgive me, though, if you find me putting a positive spin even on the less spectacular aspects of our reality. It’s just what I do.

Eating. Tom and I still tend to feed Olivia. Sure, she’s perfectly capable of holding a spoon or fork and getting food from her plate to her mouth but it can take forever and it can be messy. She likes having us feed her, prefers it over feeding herself and so, it’s what we do. It means she tends to eat more at each meal, which is always a plus when you have a child on the smaller side of average. It also means that meals take half as long as they would if we made/let her feed herself. On the bright side, she doesn’t have a feeding tube. She’s never had one and we’re so incredibly lucky in that regard.

Potty training. Olivia still wears a Pull Up at night. She’s fine all day long, pees and poos in the toilet just fine. Sure, she needs one of us to turn on the water in the sink after she’s finished because the water is hard to turn on in our house. But she can turn it off by herself, which, yay.

I don’t know if the night-time thing is a 5p- thing or if it’s just how our family rolls with peeing at night when you’re seven. I was a bed-wetter until I was at least eight years old. My poor mother had to wash sheets a lot when I was a child. They didn’t have Pull Ups when dinosaurs roamed the earth. Alyssa was also older than seven when she finally was able to go Pull Up free. So we have a history of being late nighttime potty bloomers, if you will.

Attention span. Olivia has the attention span of a gnat. Seriously. It can be infuriating when sitting with her doing kindergarten homework. Homework that should take maybe five minutes can run as long as twenty because she’s distracted by everything from a button on her shirt to a dust mite floating past her. She eventually gets it done but only after I’d pulled her back on task over and over and over again.

Sleep. Yes, it’s gotten so much better in the past couple of months. But before that it was horrible. Again, I don’t know if this is a 5p- issue or my own personal brand of stupid parenting mistakes but until the past few weeks, Olivia never, ever consistently slept through the night. She woke up at least twice, often more than that, just to make sure I was nearby. She’s always been fairly easy to get to sleep, just about twenty minutes of back/arm/leg/finger scratching and she’s out. I often wonder if those movies and television shows where parents tuck their kids in, turn off the light and leave the room while their kids are still awake are based in reality and I’m just living a special kind of sleep hell or if maybe more parents/kids are like us, needing special rituals, etc. to get kids to sleep.

Friends. Olivia does not care if she has friends. She will not (cannot?) speak to hear peers at school. Just last week she took a giant step and shared some of her lunch with a classmate who spoke to her first, asking if she could have a mini blueberry muffin. Olivia nodded and handed the girl a muffin. But she still didn’t actually talk to her. I worry about this.

What happens when O wakes up (assuming she will) socially and realizes that she wants friends but all those peers have already made lasting friendships and she’s on the outside looking in? Will second grade be too late to make friends? What about fifth grade? At what age are friendships solidified? I realize that even if her classmates do pair up as ‘besties’ in a couple of years, that doesn’t necessarily mean O will be excluded should she decide to actually try and make friends. But will she still be behind socially? Even if she wants to make friends, will be she know how?

We’re working with her, we expose her to lots of different venues in which to make friends, school only being one. But she’s sweet and funny and I hate that her peers might never know that because she can’t help but close herself off from them.

I want so much for her. I want her to efficiently feed herself, to be able to sleep through the night without a Pull Up, to be able to sit and do her homework with little to no supervision. And I want more than anything for her to have friends, people she can trust with her deepest secrets, people she loves who love her back. I suppose I want for her what every parent wants for their child, special needs or not. I want her to be happy.

And I may have to reconcile that my version of happy isn't the same as hers. I'm working on that even as I plan what to feed to her for dinner tonight.

1 comment:

whosures said...

I love you! Thanks for the honesty.