Tuesday, January 24, 2012

Up and Down Syndrome

Being the Mom of a kid with Down syndrome has so many facets.  Ups and downs daily.  Sometimes hourly.  Right now I am focused on these teenage years.

Let's take a look at yesterday, for example.  I had to wake her up at 9:30 (quite a change from her early years!) She has a certain routine and absolutely can not continue with her day if it doesn't go just right.  "You need to refill my pills please" she says.  I tell her I will in a minute, why not get dressed first while I finish up?  Nope, not gonna happen.  Impossible.  So she stands there staring at me, following me around, until I get her pill case refilled.  Then she can do her bathroom stuff and get dressed.

She comes down to eat breakfast, which is the first "food fight" of the day. No, she didn't throw it at me.  She wanted to eat her leftover pizza.  But she wanted to eat all 3 pieces left and we had to have a discussion about not eating too much.  Again.  Every meal.  Lea, like many people with DS, doesn't have the thing in her tummy that tells her brain she is full.  I don't know if there is a medical term for this, but she will not feel full until her stomach is so full that it hurts.  I told her to eat 2 pieces, so she picked the huge piece and a small one.  More discussion.  I told her to pick either the big one or the 2 small ones.  2 small ones it is.

On to her counseling appointment.  She has been in therapy for a few months since her cousin was killed.  She loves these appointments and they have helped tremendously with her nightmares and ability to cope.  The therapist asked me to be sure we don't talk about the person who killed Megan at all...no mention of his name (he was a loved one...was.)  No mention of the upcoming trial, don't even tell her we are going.  The way her brain works, it is just not possible for her to process any more information about this man.  This tragedy has caused our entire family incredible pain, but for Lea, it's unbearable.

A few errands: getting gas.  While I am pumping gas, she puts in one of our Taylor Swift cd's and sings so loudly I can hear her from outside the car.  And dances in her seat so that she is shaking the car.  She doesn't care who is watching!   Next stop is Target to return a Webkinz we got with no tag.  As we are looking for a new one, she gets distracted by the Barbie aisle.  I have to drag her away.  She has loved Barbies since she was about 3.  She finds a Victorious Barbie (from a TV show) that sings the theme song.  Her face lights up, she sings along LOUDLY and dances in the aisle, again, without regard for anyone who might see her.  I wish I had some of that!  Even on a dance floor at a wedding, I am self-conscious!  And I am supposed to be dancing!

On the way home, we talk about Lainie and how she always has sleepovers.  "I need a sleepover, Mommy."  We talk about how sometimes a sleepover sounds like a good idea, but when she gets tired, sometimes it is hard to be out of her routine.  And not in her own room, all alone, with no one's breathing to bug her (yes, this happens).  Truth is she just doesn't have many friends.  There are a lot of people who would consider her their friend, for sure, but not sleepover-type friends.  Many of the kids she hangs out with are younger, because she really is younger cognitively than 17.  Other 17 year old girls wouldn't be caught dead playing Barbie's.  She used to look forward to sleepovers with Grandma Karen, but Grandma and Granddad live with us now.  So she gets to spend lots of great time with them, but sleepovers don't really work in your own house!  On the up side, she was just asked tonight to sleep over at her "friends'" house.  I put "friend" in quotations because Claudine is close to my age!  She has a sister out of state with DS and fell in love with Lea at first sight.  So even if she isn't a teenage girl, Lea has a blast over there and Claudine and her family treat Lea like a princess!  Her face lit up tonight as Claudine was leaving.  "See you Friday!!!!!!!!!!!!!" she said.  Last time she slept good and it all went well.  Before that, she kept Claudine and her son Dawson up almost all night!

She also has had a great bond with our friend Denise.  They hit it off right off the bat.  Denise has even had Lea come over to hang out.  Lea doesn't think of Denise as someone's Grandma.  To Lea, she is just a friend!  And to Lea, friends can come in all shapes and sizes and ages.  You don't have to be 17 to be her BFF.

So we got home and had lunch and then she read her Wimpy Kid book to me.  She likes to read her favorite books over and over.  She also will look at photos until the cows come home.  Honestly, I get so bored sitting hearing the same books and looking at the same photos over and over.  My Mom, Grandma Karen, will do this with Lea for sooooo long.  I need some of that patience!

We went to her riding therapy.  This is often a crap shoot.  She usually does pretty well, but sometimes she gets freaked out and cries.  While Miss Stacy got the horse ready, Lea straightened up the arena.  Someone had been using cones and poles while riding.  Lea could easily ride around this stuff, it isn't in the way of where she rides.  But she can not leave it there.  She drags all the stuff over to the side because it just doesn't go there.  She got her usual horse, Mike, whom she loves.  He is slow and listens to her very well.  She walked him around, talking to him as usual.  I can't always hear what she tells him, but I always hear her praising him.  "That's good, Baby!  Good job" in a high pitched voice.  She walked, then trotted while posting, all while building up her core muscles.  She then did lots of cantering.  At one point, her hand was in the air as she was cracking up and saying "WEEEEEEEEE!"  My heart fills with pride and joy watching her do this.

She talks about dinner on the way home.  Her first question every morning is "what's for dinner?"  Last night was a Trader Joe's Chinese food meal that we had a sample of.  She was really looking forward to that one.  We again had a food discussion because she wanted to eat more than necessary.  We have had the same discussion 2 other times today, plus for the last 15 years.  Every day, every meal.  Every snack.  *sigh*

She cleans up after dinner, one of her jobs around the house.  She puts the dishes in the dishwasher and doesn't want any help.  She likes to put them in a certain way.  She will, however, accept help with the hand washables.  She will get ready for bed as soon as humanly possible after dinner.  Sometimes she calls her jammies her "lounge clothes."  But we all know they are jammies!  She gets her water, her DVD player and her popcorn.  I make homemade popcorn and she will get her bowl ready and next to her DVD player an hour early.  She will watch her episodes of favorite TV shows that she has seen at least 50 times each.  She has the lines memorized, yet still cracks up soooo loudly at the funny parts!

Bedtime, and another routine that can not be messed up begins.  Getting her bed just right with certain pillows and blankets in certain spots.  Medicine, teeth, read a book.  If I don't close her door all the way, she will get up and slam it saying "all the way!"

This is just one day, but most days are similar.  That is how Lea needs it to be.  There are many things about raising a kid with DS that are hard, tedious even, and that make me weary.  But the ups far outweigh the downs!  That losing-all-control laugh gets us all going!  And she is the sweetest, most sensitive soul around.  She is always the first to give out hugs.  Her challenges can be hard to work around, but I wouldn't change her for the world.


  1. Beautiful, and beautifully honest, post. We love Lea so much! My boys consider her one of their BEST friends, for sure. :D

  2. Awwww! That was so wonderful. You both are such sweet people.

    P.S. Many nights while tucking Emma into bed & saying our prayers she asks "So what are we having for breakfast?" :)