A Note to Chloe’s Teachers

Years ago I started typing up info sheets for Chloe’s caregivers.  The sheets include a photo and a brief explanation of her behaviors and needs.  We give them to her Sunday School teachers, her therapists, her babysitters, her teachers, her bus drivers, and her respite care providers, answering questions that they may have about her.  Her caregivers are always quite appreciative and find them helpful.  It’s an idea that has worked for us.  Here’s Chloe’s latest sheet:

CIMG2715

Hi!  I’m Chloe, and there are a few things you should know about me!

Medical

I am quite small for my age.  Can you believe I’m already 7 ½ years old!?  I don’t really have a diagnosis; my doctors say I have “Chloe Syndrome” since they are sure I have a genetic syndrome of some sort.  Not all of my symptoms will affect my teachers, but I thought you might want to know so you’ll understand me better and be able to pray for me.  One of my kidneys didn’t form so I only have one kidney that doesn’t work as well as it should.  My bladder doesn’t work either so I have a “tinkle hole” just below my belly button – my tinkle just goes right into my diaper.  You don’t have to wipe or clean my tinkle hole, but be careful when you change me since it usually dribbles and drips constantly!  And please make sure you pull my diaper up high in the front; otherwise my clothes will get quite wet.  I am very near-sighted, but with my glasses on I see quite well.  I hear perfectly so there’s no need to talk loudly to me.  I get physical therapy, occupational therapy, and speech therapy.  My body is pretty floppy (it’s called hypotonia), and my trunk and legs are weak.  I am still learning to walk independently, and my balance is still terrible, making me fall a lot.  I have a wheelchair and a walker, but mostly I just walk on my own, cruising from furniture to furniture or along a wall.  I wear ankle braces called DAFOs under my shoes.  Feel free to take them off for barefoot activities.

Behavioral

Know that I understand everything you say to me.  I’m really smart; in fact, I read and spell like crazy!  I am mostly nonverbal, but I’m making great progress with my talking.  I prefer to communicate with sign language.  But don’t worry if you don’t know how to sign – you will usually be able to tell what my needs or wants are by my gesturing and pointing.  And I’m very patient with people who don’t sign.  I don’t smile much even when I’m happy, but I make lots of happy sounds.  When I’m happy and comfortable I often make a squeaky, whiny-dog sound that makes my family laugh.  My mom calls it my “purr” since it’s a sound of contentment.  When I’m really happy or excited about something, I growl and kick out my legs.  Other children sometimes think I’m angry or upset when I make that sound, but I’m not.  I often cry when everyone gets excited and cheers.  If you shhh! me and remind me that everything is okay, I usually calm down pretty quickly.  I don’t cry much, even when I hurt myself.  A good rule:  if it looks like it hurt, assume it did and cuddle me if you have a chance.  Things that soothe me are being held, hugging a stuffed animal, and quietly singing songs with you.  I love music!!

Feeding

I cannot chew or swallow very well.  I only recently have started drinking thin liquids.  If I cough or choke while drinking, feel free to take my drink away for a bit.  I eat only pureed foods, but I’m learning to crunch and chew.  I’m a stubborn eater and will sometimes completely refuse to eat if I’m uncomfortable.  So don’t take it personally and don’t worry about me if I miss a meal or two.

Never hesitate to ask my parents questions about me.  We all want you to feel comfortable taking care of me.  Thanks for doing it!

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3 responses to this post.

  1. Posted by Jamie on October 8, 2009 at 4:30 PM

    Precious!

    Reply

  2. Posted by Ellen Moore on October 9, 2009 at 5:36 AM

    So now we know each other’s blogs exist! Thanks for visiting my blog. Your children are all beautiful and you sound like you get “Mom of the Year” from me! I love the idea of the one sheet on Chloe. I may do that – one day, like in 5 years when I have some time 🙂

    Saw that you’re in GR, MI. Have you been to the Conductive Learning Center? Go see Andrea B. Tell her I sent you (Catherine is the only blind child they’ve ever worked with). We’ve been 2ce. Nearly moved there it’s so fantastic!

    Nice to connect with you.
    Ellen

    Reply

    • Hi, Ellen! We aren’t in GR, MI anymore. I guess I should make that clear somewhere on the blog. We are actually in Ft. Worth, TX now. There is a little spark of recognition about the Conductive Learning Center, but I can’t quite remember why. . . . We moved here before Chloe was a year old. I’m thinking that maybe we took Zachary there . . . or at least considered it. . . Oh, I think since we’ve been in Ft. Worth I considered going to MI for several months with Chloe for the CLC! That’s what it was! It just seems impossible to work it out, but it sounds like a GREAT place for sure! Thanks for writing! Let’s “talk” again sometime. 🙂 -Kelly

      Reply

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