Monday, October 24, 2016


Olivia and I loaded up the car on Saturday and drove 162 miles from home to Purdue University for a dance marathon to raise money for Riley Hospital for Children.

Fun was had by all and it was great.

But…the time leading up to the trip was fraught with anxiety on my part.

See, this was the first time O and I had done this kind of thing alone. Usually Alyssa goes with us. But this year, she wanted to stay home and attend the birthday/Halloween party of one of her friends.

I figured that at thirteen years old, she’s old enough to make that kind of call and since Tom was home to take her to the party and pick her up the next morning, it really didn’t make sense to make her go with me and Olivia when she just didn’t want to do so.

But without Alyssa, it was just me and Olivia.

Which is fine, right?

Except…what if we were in an accident and I was unconscious? What if strangers tried to talk to Olivia, who looks like your typical nine year old girl and she just sat there? What if she was needed to tell them who she was because I couldn’t do so?

So I made a sign for her. It sat on the seat beside her and said, “My name is Olivia Ordinary. I have 5p- Syndrome. I am non-verbal. I my mom can’t respond, please call my dad, Tom Ordinary at XXX-XXX-XXXX…”

It also listed my mom’s name and her landline and her cell.

And the more I thought about that sign, the more freaked I got. I mean…obviously, we didn’t even need this little piece of paper with names and phone numbers on it. But I worried. I worried so hard.

But my worry transferred itself to the route we were taking.

The last time we went to Purdue University was two years ago and I missed a turn and got all turned around and flustered.

And damn it, West Lafayette is so freaking confusing. Of course it is. It’s a college town, so there are a bazillion one-way streets. It’s a nightmare when you only go there one time a year. So yeah, I was stressed about the drive.

But I probably wouldn’t have been nearly as anxious about the whole thing if it hadn’t just been me and Olivia going. Just the two of us…

We did it, though, because she really wanted to go. She doesn’t talk much (at all?) to the college student who is assigned to be her ‘buddy’ but she did go draw on a big dry erase board while I ate the dinner provided for us. And she and Sarah danced as we waited to go in and be introduced with all the other Riley families.

And in the end it was fine. I made the right turn at the right place and didn’t have to backtrack during the drive. I made all the right turns onto all the one-way streets and made it to our hotel with no problem.

Sure, we had to go back into the hotel twice to finally get out of the parking garage but that was low stress too.

I’ll probably keep that sheet of paper with Olivia’s name and the phone numbers in my car just because, well, it’s a good idea. I mean, even if Lyss and/or Tom were with us, well, we could all be incapacitated and she’d still need to be able to communicate and handing a piece of paper to a stranger is way more likely to happen then her suddenly speaking to them.

It’s just one of the things we have to worry about because we have a mostly non-verbal child. Sure, she’s not non-verbal at home but get her around anyone who is not immediate family and she’s clams right up.

If she could help it, I’d get frustrated but I don’t think she can. I honestly think she WANTS to speak to others but she can’t force the words out. And so for now, we’ll pass notes as necessary. The written word is still a form of communication and I’m going to run with it for as long as she needs me to.


Julie said...

Have you thought about getting her a fancy bracelet that has that information on it?

I loved that I saw you but I hate that it was for, like, two minutes!

LB said...

What does O think about it? How did you explain?