Thursday, October 4, 2012

Just, Claire (high functioning)

The moment that turns white water rapids into a summer shower of sanity; simple, I remember to think of Claire as, well, Claire. I know, not rocket science but so crucial. If I let myself go to that other place, the; what six year old children are supposed to do place, I kind of loose it because we just don't live there.

Makenna and Claire

I need and want the comradely that comes along with being a part of this group of people who have children who have Down Syndrome but sometimes I can forget and want to compare Claire to other kids with DS (totally takes the fun out of getting together).  Maybe the greater lesson is just don't compare but it did feel like a brake through when I realized that I have never been so fanatic about Makenna being better at everything then every child who is also three simply because they are three, so why Claire?  Why does Claire need to be better or as good at everything then every person with Down Syndrome who is also six? To achieve the allusive label "high functioning?"  Claire is six, in Kindergarten, and doing her best with what God, family and district 81 have given her.  I am proud of who she is; she is uniquely Claire.

Okay, it's October, a time for awareness and honesty so I'm just going to put this out there, I hate the terms "high functioning" and "low functioning."

What is the first thing you think of when you hear "high functioning and/or low functioning?"

I think of a review, those little comments on E bay and Amazon when you scroll down to check out a perspective purchase, is this a good... whatever?  Or maybe a car facts or a computer.

My kid has five stars, how many does yours have?

We are asked regularly, I mean all the time at any time, "Is she high functioning?"  I’m pretty sure this is socially acceptable in no other setting.  Seriously, if I asked a mom if her kindergartner was low functioning because they seemed behind they might want to smack me and rightly so.  Makenna, one of our "typical children" (also a word I wish we could replace for something more natural) is ahead for her age group in a lot of areas but I don't call her high functioning, that would be showing off and rude. 

I know it's hard; we all naturally want something to compare.  Claire loves her life; sometimes I forget to enjoy that because I get all uptight about keeping up.  She has meaningful relationships, hobbies (because Marry Poppins is so much more than a movie around here.)  She prayed for her friends and kindergarten class last night... mission accomplished.

I guess I should put in a disclaimer.  If you came to me and said "I don't know much about Down syndrome and I just want to understand Claire better and support your family.  What are other children with Down Syndrome her age doing?"  That totally doesn't count!  This is more of a checker at Walmart, sitting by you at the park kind of a problem.  One of the funny things about having a child with Down syndrome, and I believe any parent would agree, is that people think they know you.  Maybe because Claire looks like someone they know, or they think she’ll be an “angel” or “always happy” or sometimes they think she doesn’t understand what they are saying… Anyway, it can make for some really good and really bad times.  I want our friends and family to feel comfortable asking questions about Claire and Down syndrome.  We appreciate your support so much. In fact, I think it’s important to educate strangers as well; the questions can just be very insensitive sometimes.    
Claire, Alice and Makenna Leitz

 My Super Cool Little brother "Uncle Tony" and Makenna 

Claire and "baby Alice"
 not so much a baby anymore

Knee Update:
We talked to Claire's Doctor about her knee yesterday.  Her lab work came back clear (People with DS have an increased risk of Leukemia).  They expedited her visit to the Orthopedic specialist (a problem we often have with specialists, it's so hard to get in and I could tell so many stories about that stress).  So her appointment is Tuesday.  Her knee is the same, still swollen and pops when she over does it and she falls in pain... keep praying! She really needs to get back to school, it's been two weeks. 


  1. Tami, can your school or Claire's medical professionals help you with getting a small wheelchair for her to use so that she could at least be able to get back to school?

    I love your blog and I'm always disappointed when October ends and there is no longer a daily update from you :-)

  2. I HATE HATE HATE the high functioning question. It is totally akward and I never know what to say and usually just shrug my shoulders because seriously I feel if they are asking that then there is no use in explaining. Reminds me that a couple of times we've been asked if she has a "mild case of Down syndrome" LOL. Um. No. You've either got it or you don't!

  3. Praying for Claire, love you guys.

  4. This is a great post. I've been thinking about it since I read it yesterday morning. I think I could and should write an entire post instead of a little comment. The comparing thing is hard for all of us not matter what end of the comparison we land on. I can't seem to keep my thoughts in this tiny little box so I'l link back to you when I can wrap my words around this great topic. Love seeing your posts this month!