Saturday, October 18, 2014

Petitioning for a Princess

I've been reading some interesting commentary via social media, regarding a petition that was started to request that Disney create an animated princess character with Down syndrome.

You can read more about it here and follow a link within the article if signing the petition is something you have an interest in doing.

They'll be submitting that petition without my signature, but I certainly hold nothing against those wanting to support it.

It just doesn't feel like my fight, for a variety of reasons.

First and foremost, I'm not raising princesses at my house.  I have two daughters and I want them to be exposed to strong, inspiring women on a regular basis.  But we have the good fortune of having those women in our actual day to day lives.  Real, living...breathing...actual people.  So, I feel pretty good about LC and Effie having positive influences as they grow up, even if they never view another Disney movie again.  (Not going to happen, by the way.  Wanna watch Frozen for the 2,307th time?  Fine by me if it shuts you all up long enough for me to make a meatloaf and scrape this morning's dried oatmeal off the table in time for supper).

I'm also willing to admit I don't want to see what the common stereotypical interpretation of "a girl with Down syndrome" is going to look like.  Because I'll bet it still won't look a thing like my oldest daughter.  I've seen the dolls made to specifically resemble a child with Down syndrome.  And I don't mind telling you I haven't stumbled upon too many that didn't look like a white-skinned Al Roker in a long wig.  I feel entitled to form the opinion, since we currently have a "doll with extra chromosomes" in our toy box.  She isn't any more likely to be played with by LC than the other dolls in the pile.  If she gets picked up at all, it's because she's the only doll with shoes that can be removed to be used as cargo in the girls' wooden train cars.

Another reason I don't feel the need for a Disney princess with Down syndrome is my belief that each of my daughters can already find multiple facets of their personalities reflected in the princesses that currently exist.  There are princesses who are wildly devoted to their fathers...a princess frustrated by her inability to speak...a princess who is fearless in battle...a princess who adores her sister...a princess whose nose is always in a book...a princess who is capable of finding something to love in individuals most of society has shunned as unlovable...

If my daughters asked my advice in how to find a kindred spirit in a crowd, I'm pretty sure I wouldn't tell them to look for someone whose eyes are shaped like their own.  I'm quite certain I wouldn't tell them to seek out an individual with a nose bridge of similar design or people with hands that have the same type of creases.  I'd tell my girls to find someone who laughed at what they laughed at...who loved how they loved...whose mysterious insides were somehow made of similar stuff...whether they were looking to connect with a princess or a preschooler.

I don't think the desire to influence characteristics of an upcoming Disney character is frivolous or small.  And I wouldn't be disappointed if they did decide to feature a young lady whose tiara twinkled with the number twenty-one.  But, to be honest, if they're going to consider breaking the current mold I'd probably rather see the fiscally responsible princess.  Or the princess with a degree in a science or technology field.  A princess who wore a size 12 ballgown would be appreciated.  And I think a lot of good could come from a princess with a retainer and the complexion everyone else on the face of the earth sported from ages thirteen to twenty.


I'm not holding my breath for any of the models mentioned above to show up in our DVD player anytime soon.  And I'm okay with LC never sitting down to a cartoon movie and seeing someone dancing across the screen who shares her genetic makeup.  I've never looked up at a Disney princess and seen myself staring back, and I'm okay with her experiencing the same.  Neither LC nor Effie can ever grow up to be an animated princess...but there are so many things they are each capable of becoming.  Their happily ever afters won't involve too many hoopskirts...no talking woodland creatures (unless they're way more experimental than I was in college)...and they probably won't have their own lines of over-priced, plastic, glittery merchandise.  But I'm so grateful I get to have a front row seat to the story of both of their lives.  Because I know...whether Disney is interested in producing it or not...those girls of mine are going to put on a damned fine show.



Friday, October 17, 2014

Facebook Friday

2nd in a row...I'm as surprised as you.


Joined LC for lunch at school today. Forgot what it was like to dine with a table full of kindergarteners.
"Why does LC's sister have her hair cut like a boy's?"
"I have a grandma and an aunt and a cousin and they live in Wichita and my cousin's name is Tristan and he's five like me."
"Hey, can I ask you something?"--immediately followed by a declarative statement about themselves. x 15
"My neighbor across the street has a dog and it got sick and they took it to the vet and now it's buried in their yard."
"I'm not going to be able to make it to LC's birthday party because I'm going to Dave and Buster's and that's going to be way more fun."
"I'm wearing new shoes because I got my old ones dirty and I don't have any younger brothers or sisters just a sister who is two years older and if I turn my head then she gobbles all my food and can I have your cell phone number actually could you write it down on a piece of paper or something because I'm not really good at remembering numbers."
I'm not sure I got a chance to really make LC feel celebrated during our lunch, but I did come to a better understanding of why she might be punching her classmates.  #pleasestoptalking #kindergartenteachersshouldmakemillions

Justin on the left.  Geb on the right.

Officially freaked out to learn my uterus is a cloning machine.

On a breakfast date with the mini squibs. So far she's eaten a blue crayon, 2 sugar packets and is now singing, "I'm painting a train...I'm ready for pancakes" in the style of Buddy the Elf. #effbomb

Celebrating my boys with a quote from Hafiz.  Check out more Down Syndrome Awareness Month action over here, if you wanna...

Children can be cruel.
As humans, they certainly hold that potential. But, oh, never ever forget the capacity they have to be infinitely kind.  #godblesskindergartenboys

That's all for this one.  Catch you the next time around...

Thursday, October 9, 2014

Facebook Friday

Trying out a new feature in an attempt to update with squib news on a more regular basis.

It seems I only have time to share about our lives anymore in quips that are usually about 3 sentences long.

Hardly constitutes as a blog.

So, I'll make an attempt on Friday afternoons to go back through some of my Facebook posts from the week and share a few postings in an attempt to keep you relatively updated on our family.

It's worth a shot.

Here goes...

LC's speech therapist has been working with LC to use her iPad to be able to tell me about her day and her interactions with her friends. I'm still getting used to the idea of getting actual responses when I ask, "How was your day at school?" 
Today's conversation:
I went to speech with Ms. Lauren. 
I went to computers. I played at recess. 
I ate lunch with my friends. 
I sat by Ashlynd.
Let's wake up Jace.
Let's wake up Geb.
Let's wake up Effie.
And, as I suggested we check today's behavior calendar...
"Mom" (verbally)
I like you.
I like you.
I like you.
(Nice try, Pudge. I still checked the calendar. Let's have Ms. Lauren make an "I slipped into feral child mode at 3:00" button, shall we?)





Today I felt Jace walk up behind me and tap my hand. (Which, if you weren't aware means "Mom's Hand, I have a job for you".)
I turned around to see Jace with Mabel sitting beside him. She was holding a full bag of Cheetos in her mouth.

I may have been less than clear in explaining to Mabel what we meant by "service dog".  ‪#‎peasinapod‬‪#‎theyhavebothpeedonmycarpetthisweek‬


(We got a dog.  Intended for Jace.  Her name is Mabel.  She's four months old...and worthy of a blog entry all her own...)

This morning Jace was protesting getting on the bus. His bus driver and para are the same two he had for summer school. As we were both working to drag him into a bus seat, his para commented on how much Jace has grown since summer school.
"Yeah," I replied. "With all the other tiny kids at our house, he definitely stands out as the tank."
The bus driver quickly said, "He must be the one that takes after you."


Geb had ear surgery last week to place tubes in his ears.  I believe that makes it tube placement surgery #11 for our family.  Not that we're counting...

He decided to set himself apart by SCREAMING NON STOP for the week following the procedure.  I have no idea what the reason is.  We've been back to the doctor twice.  They assure us his ears look fine.  

So, when pharmaceuticals are not recommended, we're really left with only one option...

Wow. Effie found the ice cream treats intended for LC to share with her friends for her birthday.
Wow. She bit the top off half of them.
Wow. They were erasers.


She turns two at the end of the month.
If she makes it.
The girl is wearing me OUT.  All of the hair-pulling and language enrichment and therapy sessions and frustration I've experienced having two children who do not speak...only to learn it's been six years of bliss, people.
Sweet, silent, BLISS.

Catch ya next Friday, folks...

Wednesday, October 1, 2014

Thursday, August 21, 2014

DIY Kindergarten Introduction Book

This week LC started kindergarten.

We're pretty excited for her.

For the majority of her day, she'll be the only child in her classroom with Down syndrome.

I know lots of people who compose informative letters about their child with Down syndrome and send the letters home to share with the families of typically developing students in the same class.

I think that's a super idea.

But every time I tried to sit down and write one, I just couldn't get it to sound right.

It was either boring...or overly informative...or none of anyone's business...or all of the above.

And, frankly, it presumed they even cared to know.

When I thought about my own emotions as a student going in to kindergarten I never, EVER remember being worried that the parents of the kids in my class would like me.

I worried whether the kids themselves would be accepting.

So, that's the audience it felt most natural to target.

We made little "About LC" books to share with her friends.

Some other parents of kindergarteners with Down syndrome have asked about the book, so I thought I'd share it below for anyone interested in doing something similar.

First, I wrote text that was intended to be kindergarten-friendly and in a format that would be as appealing as possible.

The text of LC's book can be read by clicking on the picture below:

I wanted the story to be as much about the reader as about L.C.

I also wanted the book to facilitate conversation at home with parents, in case the student had concerns or other questions.

We made a full sized, laminated version to be read by the teacher or kept with the classroom library.


If L.C.'s teacher doesn't feel the conversation needs to happen...GREAT.  But if she DOES feel information needs to be shared, I wanted her to be equipped with tools that could be used without lots of effort or prep on her part.

We also made a smaller book for each of her classmates to take home.  Those books included a page with our family contact information and a page that invited them to get in touch with me if they ever had questions or concerns.  It let them know we were excited to be sharing the year with them and their kindergarten student and didn't include much information that was Down syndrome specific at all.

In case you're interested in putting together similar books, here's how I went about creating books for LC's classmates.

I streamlined things as much as possible, since I knew I'd be making more than a couple.  Also, I reminded myself not to make them overly precious.  The kids weren't going to be wildly excited about the thing.  I only needed something that would hold up long enough to share a few times if they wanted and be appealing enough to mention to an adult when they arrived home.

I shrunk the original big book down and ran it on cardstock, front and back.  I laid out the pages so that the 18 page book could be put together with 3 pieces of cardstock and 3 slices of the paper cutter.


Since I printed each book individually, we went ahead and included a dedication page in the front.  You wouldn't have to do that step...


Cut the pages in half lengthwise...fold 'em...stack 'em...

I made a semi-cover just to add a little stability and color.  You could skip that step, too.

Punch a couple holes at the folds...

Tie it together with about 12 inches of ribbon or string or whatever.

Boom.  Book.

Setting up the word template is the trickiest part.  Once it comes to creating the book, it only takes a few minutes to put each one together.

And, to celebrate back to school, we're happy to share our word template with you so you can create versions of your own mini-book.

Just email me and let me know how you plan to use the book.  (We're only willing to share with people using them directly in their own classrooms or the classrooms of children they're sending to school.)

Then, I'll send you a word template that allows you to edit the text and import your own photos.

Here's to a new school year!  Hope your's is off to a happy start!






Saturday, August 9, 2014

Because Kindergarten Will Begin Soon

An open letter to my daughter's Kindergarten teacher...


Please call her L.C.  I know her paperwork says Lainee.  I know you probably already labeled a zillion things with that name.  I know we should have thought about that.  We'll be annoying her baby brother's kindergarten teacher with the same wasted nametags in five years.  We apologize.  Please call her L.C.

Please claim her as your student.  She's on your roster.  I've told her she's in YOUR class.  Please claim her as your own.  Please be the one in charge of what she does with a para.  Please know exactly what she's working on when she leaves you for another classroom.  Please have the ultimate say in how her instructional time is being spent.  Please don't take advantage of the opportunities to pass her off as someone else's responsibility, because the opportunities will be numerous.  Please remember when she's asked to name her teacher it will be your name she says.  Please be just as quick to say her name when you're asked who she belongs to.

Please help her with her juice box. 

Please don't accept cute as currency.  Please don't let a grin and a hug get her out of doing what is hard.  Please remind her that disobeying as you smile and giggle over your shoulder is still disobeying and still earns a consequence. 

Please check the bathroom sink first whenever you realize she's gone missing.

Please let her fall down.  Please let her mess up.  Please let her experience the natural consequences of disappointing a friend with her behavior.  Please step in quickly to help her fix her mistakes, but please let a friend's rejection teach her more lessons than an adult's reprimand.

Please help her when I choose fashion over function and forget the cardinal rule of Kindergarten, "Don't Send the Child in Pants From Which They Cannot Quickly Escape".

Please, when she churns out work that is crap...call it crap.  Please let her own her failures so she can own her progress and successes, too. 

Please give her the washable dry erase markers I sent for her.  She will be a maniac with them and I don't have the funds to replace her Kindergarten wardrobe.  I can happily provide them for your class, if you'd like.  It will be cheaper for me in the long run.  Please don't leave her alone with any artistic medium that doesn't have "washable" as the first word in the description...at least not if you are happy with the current state of your carpet.

Please wait...a long time...without talking...after you ask her a question.  She probably won't answer, but there's always the chance she will.  Please give her time after you talk to her so she knows that hearing her voice is worth the wait.

Please let her run amuck at recess.  Please let her cheat death on the equipment the same way her friends do and remember she isn't easily broken. 

Please make sure she leaves the bathroom wearing the underpants she went in with.
There's an unexpected anatomy lesson waiting under that skirt if you don't, and I'd rather she not be the one to teach it to the wide-eyed gentlemen in your classroom.

Please be patient with her mom.  Please remember I've trusted others to stop her beating heart and bring her back again and somehow this feels not so different even though the heart at risk is mine.  Please know I want to be your collaborative partner and your biggest fan and forgive any fumbles I make along the way.

Please let her know you believe in her.

Please never forget she believes in you.

Please tell me if she's running low on pencils or erasers or friends so I can respond accordingly.

Please remember to call me if you should ever need anything at all.

Wishing you a very merry school year...

L.C.'s Mom


Thursday, July 17, 2014

Because I'm Selfish...

I would rob you of heaven.

Without guilt or regrets.

If I could cheat you out of it...even for an hour...I would.

Because it's been too long since I've felt a clumsy "love you" pat on my bottom.

And too long since I've seen you surprised to see me sneak into your kitchen.

I don't miss you every day.

I feel you close to me all the time.

I know your heaven would never find you separate from any one of us.

But because I'm selfish...

I want to bring you out of paradise and plop you down in my filthy living room.

I know you've seen all my babies.  I have a feeling you've known some longer than I have.

But I want to hear you laugh when I tell you I'm typing this knowing that Jace is trapped in the kitchen pantry because Effie shut the door behind him when he was looking for Froot Loops and he doesn't know how to turn the knob.

I want to hear you say for the hundredth time how much Geb looks like Justin and I want to hear the names you'd morph all the squibs' given names into.

I want to tell you how Grandpa became Papa Lollie after you left and how LC's world would simply stop turning if that man wasn't in it.

I want to watch you watch Effie eat a bowl of horseradish dip.

I need you here to show me how to love and laugh at the things about Jace that most people are afraid of because that's what you were best at and it would make me brave when I'm afraid I just can't do this right.

I've missed sharing my birthday seventeenth with someone.

I have a feeling you nudged Geb into showing up on the last seventeenth of the year.

But because I'm selfish I want to see his name written in your serial killer handwriting on your refrigerator calendar.  Even though you'll remember it.  Because he will share your seventeen.

Because I'm selfish, I want to hear you tell me it's okay I didn't call you on the last July 17th you were here.

Because I'm selfish I want to snatch you back from Jesus and angels and all those family members you've been missing for years and have you all to myself.

But I can't.

And I wouldn't.

Because you were too good not to share.

And you taught me better than that.

So, today we'll plant some flowers.

We'll tell stories about GG Grace and summers on the farm and we'll buy maple nut goodies and cherry sours and find some peaches to eat with cream.

I'll make something sweet on that dented pan you left on your last visit.

I'll make sure it's something that covers the squibs in sugar and goo and after they've bathed and gone to bed I'll have a second piece while I wish you happy birthday and I won't leave any in the pan for breakfast tomorrow.

Because I'm selfish.