Baylee at her most favorite place in the world.
Category Archives: Cornelia de Lange Syndrome
Shameless Plug
This summer I must have had too much time on my hands as I quickly became a Flickr addict and I recently discovered the fun of Facebook networking with my extended CdLS family.
One of the fun things on Flickr are the photo “groups”. I belong to too many groups to count, but every one of them shares amazing photos. Today I’d like to put in a shameless plug for our very own CdLS Flickr group. Please visit to see the many faces of our beautiful, amazing children. And if you have any photos you’d like to add, please feel free….
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Special Exposure Wordless Wednesday
Then and Now
Then -- August 1996
Now -- July 31, 2008
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Baylee loves soap!
On our CdLS “community” we find many similarities I like to call “CdLS Things”. It is fascinating how many behavioral similarities (or “quirks”) our kids share. How can just a few gene mutations cause such profound similarities among unrelated people?
One thing many of our kids like to do is taste things that aren’t food….things that most of us would find completely unpalatable. Soap is one of those things….yes, bitter, foul soap. Baylee LOVES soap! Wherever we go, we have to visit the bathroom, and she HAS to sample the soap while she washes her hands. I have always thought Baylee senses the world differently than most people, and that includes her taste buds.
Last week we went to the Nebraska Shrine Bowl football game at Memorial Stadium, the home of the Huskers. The stadium is old, and the bathrooms are cave-like, dark and cavernous. Baylee was absolutely terrified at first to go in, but since I didn’t want to deal with any potty accidents, I managed to get her in there. Once we were in, she discovered the unique sinks they have in there, which are constantly running fountains. Two of her favorite things–running water and soap! She was in heaven! She wanted to go to the bathroom about twenty times during the rest of the football game. We managed to visit only once more, but only because she bolted in there as we were leaving the game.
I’m sure I’m one of the strangest photographers out there, but I just HAD to snap this photo of her in the bathroom. There was no one else in there, so I felt I could do without scrutiny. If you look at her mouth, you can see the soap.
Try not to gag….to her, it’s the best flavor on earth!
Now, if only we could get Husker season football tickets….
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DIY PVC Pipe “Kid Wash”
Baylee loves all things to do with water. If she doesn’t get her “water fix” she’ll do naughty things like flood our basement or overflow the upstairs bathtub. Our ceilings have been customized by Baylee.
When I was told about this DIY project on a nifty little website called Instructables.com, I knew Baylee had to have this thing.
KidWash 2 : PVC Sprinkler Water Toy
We gathered all the supplies, most of which were readily available at any hardware store, but had to wait on the quarter mister sprayers since they were only available at Lowes in our city. Unfortunately, Lowes is about as far away from our house as you can get and still be in the city. It’s at least a 30 mile round trip.
We finally had another reason to go to that part of town, so we made the drive and stopped into Lowes to get our misters. Unfortunately, we discovered a new restaurant in the Lowe’s parking lot–Texas Roadhouse–and since it was dinner time and we were hungry, we had to stop there, too, so the trip to buy a $6 pack of misters turned out to be much more expensive (but aren’t those buns and cinnamon butter TO DIE FOR?).
In any case, we made the Kid Wash today. It was very easy to make and the best part is that it is a HUGE hit with Baylee. She thinks it’s hilarious and hasn’t grown a bit bored of it yet. Today was the perfect day for it, too, as it hit nearly 100 degrees.
$24 in PVC & glue + $6 quarter spray misters + $50 at Texas Roadhouse + $5000 in gas to get there (just kidding) = endless summer fun!
Giving Baylee a non-destructive way to play with water — PRICELESS.
Note to self–must find copycat recipe for buns & cinnamon butter…..
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Blueberry muffins!
I got this recipe from Karen (from Ben & His Brother’s fame). They were yummy! Thanks Karen! (Please excuse my ugly muffin tin!)
Today Baylee started summer school. It’s only two hours long for three weeks, but with the bus trip, I might get 3 hours of peace and quiet. I can even unlock the doors!
Unfortunately, this is a double whammy for Baylee with routine change. We are getting new windows installed in our house today, and when that window truck pulled up, she ran outside to see it and screamed and screamed and screamed….. I’m sure the neighbors thought I was beating her….lol. Sometimes I really wish I could get in her head to know what she is thinking. Fortunately, she warmed up to the installation guys, then the bus came, so now she has other routine changes to worry about. She’s also going to a different school than she usually goes to and there will be new teachers to test. I’m sure Baylee’s going to be a lot of fun to be around today!
She also didn’t sleep last night. At 3:30 am I found her still standing in the hall playing with her baby. We had to move her bed away from the windows and take down valances, curtains and blinds, plus move furniture away from windows in other rooms. Bottom line, she’s pretty freaked out. Unfortunately, the window guys will probably be here for three days.
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More conference bits
I wanted to put in a plug for the photographer. Rick Guidotti, that was at the CdLS Conference last week. He had an infectious personality and was able to capture the beauty of our kids all throughout the weekend. For those of us with kids with genetic differences, his mission is one close to all our hearts.
Please visit his site at Positive Exposures — the Spirit of Difference and consider supporting his organization.
More conference “bits” coming later.
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Happy Birthday America!
We are very grateful to be living in the greatest nation on God’s green Earth!
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A need for speed!
Baylee has boundless energy so she needs exercise….and LOTS of it. Today we braved the heat and humidity to go for a bike ride. We have some bike trails in our neighborhood that are protected from the streets, so when we are there we can just let her ride on her own as fast as she wants. As you can see from this video, Baylee has a need for speed!
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Sometimes our adventures aren’t that fun….
DH’s PDA died today and it’s his brain. He has to have one for his job. We were in the Sprint store checking out the PDA phones so maybe he could combine his two devices. Baylee was in a “mood”…..one of her autistic-like behavior moods. (Just another day like any other….)
Baylee is non-verbal, but does engage people. Because she lacks speech, her way of engaging people is to either touch them with her hand or with her foot. If I have a hold of her arms, she’ll use her feet. She never “kicks” or hurts people (it’s much more of a firm touch than a kick) but of course, her foot touching can be interpreted as being a kick. And yes, I know she is invading personal space. Trust me, it mortifies me every time she does it. I’d give EVERYTHING I have in the world to make her act normally.
In the store, Baylee was squirrely, so I had a good hold on her arms. A lady was perusing some phones nearby and Baylee foot tapped her. The lady turned around and yelled “Do NOT kick me!”. Then she gasped when she saw Baylee’s face because it obviously occurred to her that Baylee’s NOT “normal”. The gasp offended me almost more than the yelling.
I was furious inside. I wanted to say “Yelling at her will not make her stop. A little tolerance and understanding go a long way.”
But I didn’t. I was so mad I couldn’t think of it at the moment, so now I’m mad at myself for not being quick. I’ve never encountered this before because most people are quite understanding and can see that maybe there’s a reason Baylee has strange behaviors just by looking at her. I was at a loss for words.
Instead my DH piped up “She’s special and she’s sorry”. Then I told Baylee to sign “Sorry”….which is practically meaningless to Baylee, but I did it for that woman’s benefit even though it should have been the woman apologizing for yelling at a child with special needs. She shouldn’t have yelled at ANY child, especially one that small anyway, regardless of ability.
Anyway….I’m angry & annoyed, and feeling guilty because it’s not Christian to be angry about this. I think it’s possible God made Baylee kick for this woman’s benefit and maybe now that woman is rethinking how she treats others. Maybe it was a lesson SHE needed to learn. I just wish Baylee and I didn’t have to be a part of it.
The devil in me is sure hoping this woman learned a lesson today because I found it pretty painful. It better have been worth it.
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Our Adventures with Baylee... 