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.
Hugs. As you know my son was non verbal for most of his life, even at home. If you talked to him, he would explode into a series of nonsense words and sounds and especially so if the situation was stressful for him. Like a stranger talking to him. Or being bullied at school. He could though write so we knew he was in there. It was a really helpless feeling. For him, for his teachers, for us.
For the last few months, he is so much better. Not perfect, but much better. It took him awhile, but he slowly started talking, trusting his ability to use his words and trusting others to listen to him. Hopefully Olivia will soon too.
All of that said...I am proud of her for doing a great job at the dance with lots of strangers, whether she spoke or not. And I am proud of your patience and your understanding. I know firsthand how hard that can be sometimes. You are an awesome mama.
There are bracelets you can get for non-verbal kids with all that information. I'll track down the link for you. I can't imagine the stress that would add. Ethan is verbal, but early on, he would refuse to talk to people he didn't know, or when pushed, or if he thought they were talking down to him. Terrified me in the same way of what if there's an emergency?
Sounds like you both survived fantastically.
It is so scary the things that you need to do to protect your children. What an insightful mom you are to think ahead (even if it scares you to imagine the worst scenario). I'm so thankful that it was not needed yet and I really hope that she will become more verbal as she continues to grow.
Oh sweet Olivia. So glad that things went smoothly with the dance marathon. It sucks having to think about things like that in emergencies. I've seen some stickers you can put on the carseats too, although she's probably getting close to growing out of one if she's not already now that I think of it. It's hard thinking about when you're not able to be there to speak for them when they can't do it for themselves. hugs mama!
That is understandably stressful. I like the solution you came up with. I'm proud of both of you for moving forward with your plan and going to Purdue. Each time you walk into those situations you are teaching Olivia that these places are safe, with safe people and it gives her opportunities to grow and learn. And with every opportunity she moves that much closer to speaking in new situations. Glad you both had a great time!
We help moms have full-term pregnancies and healthy babies. And if something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.
© Privacy, terms and notices