Friday, March 21, 2014

A Day in the Life

In honor of World Down Syndrome Day, I'm participating in a Blog Hop with a bunch of my friends from Down Syndrome Blogs!  Here is a look at a very typical and very boring normal day in the life of Violette.

7:15 a.m.

The bathroom door opens a crack, then closes again. Then opens. She comes barreling in. Think a gentler Kramer from Seinfeld.

“'mornin' Mama!”  
“Good Morning Puddy!”
“Howd’ya sleep Mama?”
“Good, Pud-pud. How did you sleep?”
“Awesome.  Whatcha doin’, mama?”
Me, putting on my makeup.
“Tap Dancing.” 
“Mommy, you not tap dancing. You puttin’ on your make up!”
“Where’s your head gear, Puddy?”
“I take it off myself, Mama.”

And so begins many week days at our house.  I scurry around to get dressed. She comes downstairs with me. Her big big sister is at the table.  I get my breakfast, get backpacks and get her juice or milk. She gets her iPad, or draws or turns on the TV.  I kiss her goodbye, tell her to have a great day, and she tells me to have a gweat day too. We leave her by herself downstairs. Her daddy is upstairs, just waking up and her middle sister is sleeping.   Some mornings, now that she is getting bigger she’s started getting her own clothes out and getting dressed.  Our sitter gets to our house around 8:00 and gets breakfast made and everyone ready to go.  I never imagined she’d be as capable of not getting into trouble in the morning or amusing herself without constant 24/7 supervision when I found out we had 1 in 16 odds she’d have Down syndrome, but in this aspect she is very much like her sisters were, and very reliable.

They go to the bus. She is in 1rst grade and rides the bus with her sister.  She goes to school. She generally behaves pretty well, though we've received occasional notes from the school that she doesn't want to come in from recess.  If that happens too often, she doesn't get her iPad.  Her principal reports that we are lucky she doesn't come home with holes in her because she is so sweet he and the secretary have to restrain themselves from eating her up all day.  I know what he means – I have to restrain myself too.  She learns sight words at school, and counting. And the other stuff kids learn. Yesterday she told me they had a fire safety drill.  When we are at the school, it is obvious everyone knows her, everyone likes her and she has fun.

She gets home and does her homework with her sister on the stools at the counter. She usually wants a snack of chips and cheese (basically nachos.)  When she’s done, she either watches Frozen (she knows all the words and acts out scenes with her sister) or Toy Story (she plays with her Toy Story guys all the time, again, acting out scenes with them) or if the weather is nice she goes outside with her sister and plays.  

They love to play on the swing set, or bounce on the trampoline, or color on the driveway with chalk or ride their bikes or scooters.  She occasionally has an accident on the trampoline from all the bouncing – low muscle tone combined with a lack of desire to stop playing is the cause of that, we think, though she has been potty trained day and night since right before she turned 4.  Sometimes too she and Lilianne will be playing Minecraft on the iPad.  Apparently they both have “worlds” that they can visit.  It is funny to hear Violette yelling “I by the tree by the ice near the sheep Lilianne! You find me?” She often comes to me with requests to buy her “one tiny little new App.” She scours the app store for new apps she might like, eagerly pointing out if they are free to me so I’ll get them for her. Other times she likes to play in her room and draw.  The other day she drew our Vitamix. Hilarious.  

When she sees me she comes running “Mommy Mommy, you home, you home!” I’ll ask her how her day was, and most days she tells me “All stars.” She has a daily book that talks about her behavior as she moves from activity to activity.  A star means she did well. A flat line means she didn't. This year has been a mostly all-star year for her. Kindergarten was rougher – learning the ropes took a while.  We worked with the school and worked through it. The consequences of poor behavior at school were getting the iPad taken away from her. That did it.

We try to eat dinner as a family, and she is right there in the discussions. She and Lilianne and Vivianne squabble freely.  Having Down syndrome is no excuse for any bad sisterly behavior. “I DON’T LIKE YOU VIVIANNE” “WELL I DON’T LIKE YOU EITHER, VIOLETTE” are phrases frequently exchanged at our house.  

But she is very polite – she almost always asks before she does something “Please mama, can I have some orange juice” or “’scuse me, Madre, you get Toy Story guys for me?”
Lately we have had many conversations about teeth – her big big sister got her braces off, and she and her middle sister have devices in their mouths.  Violette also wears a headgear and palate expander to make her mouth bigger.  Her big news this week was that she lost her first tooth. She knew the whole deal about the tooth fairy and keeping the tooth. Too funny.  During a normal week we are either driving her sister to choir, her other sister to sports practice or she is going to Special Olympics.  Some days she has speech therapy and Occupational Therapy, which we do every other week.  Her weekends are similar, but include smoothies, church, her cracking eggs for breakfast, swim lessons and going to a lot of sporting events with her sisters.

She never likes it much if her sisters get to do something she doesn't. This week it was her 9 year old sister getting to go to see the musical Wicked.  She wanted to know where we were going and why she didn't go. I told her it was something that only older girls were allowed to do, and that she wasn't old enough. She immediately replied “Like the Hunger Games?”  Yes, she totally got the concept and remembered that months earlier she and Lilianne were too little to watch the Hunger Games movie.  She gets the big concepts.

8:30 p.m.

Our bedtime routine is usually pretty funny. She is stubborn about not wanting to come up for bed.  Eventually we coax her up. She goes potty, takes her medicine, brushes her teeth and then gets her jammies on and we do sight words or read a book or play.  Lately I've been teasing her that Mr. Weesie is in the mirror. She goes nuts about Mr. Weesie. “There is no Weesie, Mommy! That’s ME! VIOLETTE!”  I think it is funnier than she does, talking about Mr. Weesie. 

Another part of our ritual is putting on her head gear or cranking her palate expander. Last night I told her it was a "crankasaurus" night and she said "YAY! YAY! YAY" When I was out of town her father had to do it.   She got things set up for him. 

When she is ready for bed, she climbs in with no fuss. I turn on her "nigh-nigh" music (Sounds like Fun) – the same music she has listened to every single night of her life.  I usually climb in bed with her.  She has to have her Bunny in her hands, but she also has to be sure that Big Dumbo, tiny Dumbo, Baby Addie and several other bunnies are in her bed. Anything that doesn’t belong she throws out unceremoniously.  I ask her about her day, her friends, her teachers. She doesn't usually offer much, so I have to ask her If Mrs. So and So is very mean?  She laughs and says “no she’s nice, Mommy.” What about that terrible mean old Mrs. Whosie Whatsie? “No, Mama, she nice too!”  She likes to snuggle with me, and say “ugga mugga mama” and rub noses.  Lately I've had to kiss her chubby neck a lot because the headgear gets in the way.  I usually have to explain to her that next is Lilianne’s turn for good night snuggles.  She’s ok with that, and rolls over to snuggle with her bunny and fall asleep. 

"Night Violette, I love you!"

"Night Mommy, I love you too!"