Friday, January 6, 2012

I'm her voice. But what if I'm not there?

I'm used to talking for Maya. 

When she was younger, I would explain her thoughts . . . That noise means that she's hungry, She's looking in that direction because she wants the play doh on that bookcase.  When she's at the playground, I translate for the other kids . . . She said that she'd like to hold the shovel, She stopped because she can't climb the stairs without help.  Now that she's making more sounds, she tries to speak for herself, but it's unclear, so I still help out be re-stating . . . She said her favorite animal is the alligator, She said that her name is Maya.

But what if we got separated?  What if she ended up in a crowded place, alone?

She's little enough to still be confined in a stroller or shopping cart most of the time that we're out & about, but that will change.  Someday, sooner than I expect, she'll be walking through stores with me.  If we become separated, if she gets lost, she can't ask for help. 

She can't ask for help. 

When I think about that, it makes my heart race a little.

She needs to be able to communicate in an emergency.  She has to be able to say "I'm Maya.  I can't talk, but I understand you.  Please call my mom & dad at xxx-xxx-xxxx."  Since she won't be able to say that with her mouth for quite some time, we're getting her a bracelet that will say it for her.

If you have a nonverbal child, you might want to think about picking up a medical alert item (bracelet, necklace, dog tag, zipper pull, shoe attachment, etc) that has your child's information and emergency phone numbers.  I ordered Maya's this morning.  I'm anticipating that it will be a struggle to get her used to having a bracelet on, but it will be worth it for the mega peace of mind that it brings.

By the way, I didn't come up with this idea on my own.  It came from a book, one that I recommend to all parents of kids with special needs---or, to anyone who is a fan of Maya's and wants to hear more about what it's like to be the parent of a child who can't talk.  The book is called Schuyler's Monster, by Robert Rummel-Hudson.  I've never recommended a book on the blog before, but I recommend this one.  I'm not an overly complimentary person, and I'm a picky reader, so you can trust me when I say that the book is great (as is his blog, here).  Really great.  After I read it, Dave read it.  Then my mother, mother-in-law, and sister all read it.  If you have a nonverbal child, you'll be nodding along, and if you don't, then you'll come away with a clearer understanding of some of our concerns, hopes, and struggles.  Add it to your to-read list (or go get it right now for your Nook or Kindle).



Kristina said...

Hi there,

Can you recommend the website you purchased Maya's bracelet from? I'd like to order one for my son.

Thanks so much,

Dana said...

I ended up ordering one through Lauren's Hope (google for the website) but have to say that I can't speak for the quality of their stuff because I just ordered it today. If you google "kids medical alert bracelets" you'll see a lot of stores.

Crisco said...

We ordered these for our kids for Disney World when they were too young to reliably remember our cell phone numbers. It made me feel much better knowing they had something on them that would help someone find me when they couldn't provide that information alone.

Marian the Librarian said...

You can also order custom temporary tattoos with your info, which might be helpful in places like amusement parks or water parks where a bracelet might slip off.

Colette said...

Hi Dana,
Med alert bracelets are a great idea, we got one for our guy and he hated it at first but now he asks to have it put back on if we have to ever take it off for any reason. The one he has has a closure that is too difficult for him to remove on his own, so hopefully Maya's will be the same.

Erica said...

Dana, thank you for reminding me to do this! I have been thinking about it for a while now. i send my kid on the bus daily without an aide. what if something happened to the driver? Avery has to have one of these. Im thinking of getting a necklace though b/c of averys repetitive hand movements. thanks!

Cathy Mealey said...

My son refused to wear the bracelet, but we were able to order a metal tag from a pet supply company, designed to slide onto a webbed collar. We loop it through the straps on his sneaker, so it lies flat on the top of his foot, and he does not object!

Anonymous said...

I just got my son an ID bracelet over the holidays, I don't know why I waited so long to get one (he's almost 7!) It is actually a bracelet that runners wear, called a RoadID and it was very inexpensive. Since he will grow out of it quickly, I decided to try it out. It's great - and has all of the important info - non-verbal, autistic, peanut allergy, has our phone numbers and our address, and his DOB. Makes me feel safer and makes him safer as well.
PS. I am new to your blog - love it - your daughter is a beauty!

Dana said...

These are all great ideas (which I'm saving as back-ups in case we can't convince her to keep the bracelet on).

Kristen-Thanks! I think she's pretty cute, too :)