Monday, October 31, 2011

Request #2

You may be asking yourself WHY we feel the need to post every day for a month about Down syndrome.  It may seem a little over-kill or over-the-top.

It’s not just because I’m bragging about my kid (although, I will admit, it’s a good byproduct.)

It’s because we want people to realize that our kids, and all individuals with disabilities, are just like you and your kids.  They have likes, dislikes, hopes, and dreams.  They have things they want to be when they grow up; they’re smart, capable, and lead purposeful, well intended, and meaningful lives.

You see, Piper’s unique.

Piper’s in the 10%.

Piper was diagnosed with Down syndrome prenatally.

And she wasn’t aborted.

Did you know that 90% (or more) of babies that are prenatally diagnosed are terminated? 

Right here, in the US.

Why?  Lack of information.  Fear.  Negative stereotypes.  And because people think “that’s what we do.”

Down syndrome is the most commonly occurring congenital anomaly.  Chances are, you will know (or already DO know) someone who has been touched by Down syndrome.  And I hope, I really hope, that because you know Piper, you can tell them that it’ll be okay.

Because life IS okay.

It’s better than okay.

Piper is everything we didn’t know we needed.  She’s our sunshine, our little munchkin, and our pride and joy.  She’s taught us more than we have her, she’s shown us the family we were supposed to be, and she’s proven to us what’s really important. 

We are so, so lucky that we were chosen to be her parents.  I had no idea how much we needed her. 

We needed her.


happy Halloween BOO!

We took the girls to the Light Night carnival at our church tonight.  And it was a BLAST!  There were TONS of games and TONS of people.  We took the wagon, in which the Bumbo fits surprisingly well, so both girls got to ride and be “big”. 

And with the wooden sides, it had a farm-y feel.  They were mighty cute, if I do say so myself.

They even had a black light puppet show- Piper LOVED it.  Addy was enthralled.  And the lead puppet singer was in a wheelchair; love that our church is really working on building disabilities into their services. 

They had a professional photographer there, and we should get pictures in a couple days so I’ll show you then.  But, in the meantime…


…Happy Halloween!  Hope you’re night wasn’t too scary!

Sunday, October 30, 2011

Request #1 (of 2)

Now that Down Syndrome Awareness month is coming to an end, there are two things I want EVERYONE who knows Piper (or someone else with disabilities) to know.  They both break my heart a little (okay, a lot) and I don’t like to talk about it.  But, because this is what the month is all about, here I am.

The first task I have for you is about the word “retarded.”  And because I can’t say it better myself, I’ll take it from the Spread the Word to End the Word campaign

“When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.” 

The fact of the matter is that we, as a society, have ended the use of other derogatory terms that were used in negative ways against groups of people.  But somehow, somehow, “retarded” remains as one of the last “acceptable” adjectives in our vocabulary.  I’m sure you’ve seen just how easily it rolls of the tongue of someone else.  Frankly, it’s hate speech.

We protect people against racial slurs.  It’s not acceptable to refer to others in jest based on their socio-economic standing.  Lawsuits have been filed because of negative jokes referring to a woman.

But, apparently, when it comes to cognitive abilities, it’s still fair game.

And it sucks.

Not only does it propagate negative stereotypes about people with disabilities, but it takes away a piece of their person. 

So, please don’t use the word.  Governments, school districts, and private organizations have all pledged to not use the word (even in appropriate ways); we shouldn’t ever hear it, particularly in the “lame, stupid, annoying” sense.

Because when you say it in a negative manner, you’re referring to her:


…and she’s anything but lame, stupid, or annoying.

Saturday, October 29, 2011

PEP Conference

Well, we’re HOME.  We left on Thursday afternoon to drop the girls off at my parents house (and all the junk that two girls require for a two-and-a-half-day-stay…  good grief…) and head up to Vail for the PEP Conference.  Yes, you read that right- without the kids.  It was a first for Addy.  Yikes. 

The timing was pretty perfect, though- we had a pretty decent snow storm on Wednesday.  So by Thursday, the highway up was mostly clear, but it was GORGEOUS!


P1110699Views from our hotel room- not too shabby, eh?


P1110704On the walk to the car and the bar where we had dinner and a rather educational experience with a bunch of drunk Halloweeners…

And, oh my word, did we have FUN!

The PEP (Parents Encouraging Parents) conference has been happening in Colorado for about 30 years now.  And, funny thing- my parents went for me when I was a baby. 

What is it you ask?  It’s a three day conference to connect parents of kids with disabilities with each other AND to the school systems.  It’s for the whole state, and it’s free.  Yes, FREE.  Two nights in a NICE hotel and all your meals (except one) are paid for.  It’s put on through the Department of Education and includes educational professionals, law professionals, and leaders in the community that have knowledge in Medicaid, insurance, and outreach sponsors.

And it was AWESOME.  There were about 120 people from all over the state, with all different ages of kids and different disabilities.  We took classes on transitional IEPs into preschool, how to navigate the private insurance world, Luke went to a Dad’s only group, a talk put on by a lawyer who’s won all kinds of awards for his help in the disability world…  We had small groups that we go to know really well, met people who live near us, and others who have kids like ours.  I met several professionals in our area (teachers, Special Education Directors, and therapists), and I think I found some new opportunities for both Piper and me.   

There are a few things we had discussed that I thought were really neat and I’ll share them when I have a few more minutes.  But it’s late.  And Addy’s overly clingy (she keeps grabbing my face with both hands and kissing- over and over and over) so I’m nearly certain it’s going to be a long night.

But gosh darn- it was SO worth it! 

I am so excited about so many things tonight!

Really, if you live in Colorado- you HAVE to go.  I promise, you’ll love it.  There’ll be two more conferences before the end of the year- you can learn more here.  If you’re interested in going, register soon; spots usually fill up quickly. 

Big major, huge, ginormous thanks to my parents for taking the girls for the weekend- even IF Addy didn’t sleep…  Love you!

Thursday, October 27, 2011

Just 'Cause

So Luke and I are in Vail- without the kids- for a conference about IEPs and such, sooo...  No great post tonight.  Except to say that, well, I may actually get to sleep tonight.

...and to say "good luck" to my folks who have my non-sleeping child until Saturday.  We need to enjoy these two nights because, after this, we may not get to again soon...  (just kidding.  I hope.)

Wednesday, October 26, 2011

Love Break

So I was working today trying to make up for the past month of being locked out of the state’s system and being unable to work, when I suddenly had two munchkins sharing my lap space.  I had just finished nursing Addy and Piper decided she needed to join in the fun, too.  So the big one crawled over the top of me and landed herself on my lap, too. 

Good gyad golly do I love these two…  Perfect way to spend a break!

P1110614Addy looks terrified here, but I assure you…

P1110615…but she wasn’t.

P1110617Piper even shared her pretend snack with Addy.



…and that sore on Addy’s cheek?  That’s a story for another day…

Tuesday, October 25, 2011

Talking Tot

Just found out today that our insurance is going to cover speech therapy next year.  WaHOO!  It doesn’t this year, at least I don’t think it did (maybe it was last year?) when I looked, so I was starting to get a little nervous now that we’re looking at aging out of EI.  There isn’t even a maximum number of visits that they’ll cover! Praise God for group health insurance!!! I think that speech is definitely the place Piper’s going to need some extra help, at least for a while, and I’m going to go out on a limb and assume that the speech provided in preschool isn’t going to be enough for her. 

Anyway, Piper’s had a few very funny VOCAL sentences lately.  She’s been talking in paragraphs a lot- adding words to her signs or adding signs to her words, depending on her mood.  It’s SO STINKING AWESOME how much she’s started talking lately!  I can’t even begin to describe the level of excitement when something new pops out of those little lips. 

So, just for fun, the vocal stylings of my two year old:

  • I be back (apparently we have a Schwarzenegger prodigy- lovely…)
  • Ow-sie (outside)
  • I so pretty!
  • I’m so big!
  • Piper:  Where’s Addy?  (me:  She’s already IN her car seat- see?)  Piper:  She’s being quiet- she sleeping?  (me: No, she’s not sleeping- she’s just being good.)  Piper:  …laughing hysterically… <<Does this tell you how often Addy’s actually GOOD in the car???>>
  • Tall Nana? (“call” Nana)
  • Little xyz (little any-noun-she-feels-like)
  • Biiiiii xyz (big any-noun-she-feels-like)   
  • Wid xyz (with any-noun-she-feels-like)
  • Wassa (What’s that?)
  • Das a (that’s a…)
  • Dis uh (this one)
  • Osh osh osh (wash wash wash)
  • Mom (yup, I’m MOM, not mama, or mommy- Mom.  It’s really quite cute)
  • Mean mom
  • I mad
  • Bat (bath)
  • Nana’s biii daw… (Nana’s big dog)
  • booburies Psss?  (“Blueberries PLEASE???”  She’s very upset that blueberry season is over and she doesn’t quite catch the concept of WAY TOO EXPENSIVE…)


Monday, October 24, 2011

Things I never expected…

…from my two-and-a-half year old…

Before Piper was born, I read and read and read all the information that’s out there about Down syndrome.  Lots of it was scary, some of it was useful, and the rest of it I read, dismissed, and thought I gleaned what I needed.

Most of what “stuck” has been a non-issue and caused me to worry about stuff that I really didn’t need to. 

There are, however, significant pieces of information that I really should have listened to a little better.

Like the fact that kids with Ds are small.  I figured that I was small (like, really really- 40 pounds in third grade?), so Piper would, undoubtedly, be small, too.  “Small” I’ve learned, though, is a relative term; it didn’t really sink in how small we were talking.

So, I pulled out some 12-18 month pants yesterday in an attempt to expand the kid’s fall wardrobe and I was reminded, once again, what small really looks like.  It’s a sad day in paradise when you’re 30-month old child can’t keep up “baby” pants.  But I digress.

Another thing I never expected from my two-and-a-half year old?



Her being able to use the bathroom sink as a drinking fountain.  What you don’t see here, though, is her sitting IN the sink in an attempt to bath herself in the miniscule vessel.  Have I mentioned the kid loves herself a bath???

And also?  Thanks, Nana- thanks a whole lot for teaching her to drink from the drinking fountain.  It’s been a valuable life skill.  Or something.

Sunday, October 23, 2011

Oh, the Irony

The background:  Piper came home from the hospital when she was seven weeks old.  She weighed just over five pounds at the time, and was consuming a crazy number of calories each day.  Because of her over-active metabolism, she was required to eat around the clock.  She woke up on her own every few hours to eat overnight, but as she got a little older, she wanted to sleep for longer periods at night (go figure…)  So, for about two months, I was “required”, per the doctors, to keep waking her up.  I eventually figured out that she was MY kid, and I knew that, by waking her up at night, she wasn’t wanting to work as hard during the day AND she was eating less during the day, sooo…  I stopped.

Fast-forward to NOW:  I have a child who COULD sleep through the night and is nowhere. even.  CLOSE.  As in I’m wondering if by the time Luke retires, maybe I could possibly get a few minutes of sleep.  And I’m starting to wonder at what point you just stop moving from exhaustion.  Because it’d be good to know to make sure I’m not driving…

It’s a darn good thing she’s cute.  Even at 2am.  And 5am.  And 11pm…

But have no fear- it doesn’t slow her down during the day.  No, siree- this child- this one right here?


She decided to get up on hands and knees today.  By herself.  All 12 pounds of her.  In pursuit of the most favorite-est toy (the half-full bag of baby wipes…)  Holy smokes, I’m not ready for this…

Saturday, October 22, 2011

Halloween- The Practice Run

There’s a high school here in town that hosts a Halloween party and an Easter party each year for our Ds association.  It’s, unfortunately, on the other side of the world from here, so we headed down nice and early this morning.  Luke wanted to go to an open house for his favorite geek store on the other side of town instead, and because our littlest twirp has been known to be a very unpleasant travel companion in the car from time to time, I wrangled my poor mom into going with us to help. 

Piper’s obsessed with cows at the moment; like, seriously really obsessed.  So when I found a cow costume, I knew it was meant to be.  She did need a bow, though, to make sure that she was recognized as a GIRL cow.  She also wanted to take her baby cow with her, sooooo…



…and yes, she pulled it (almost) the whole time.  Funny?  Uh, yes.

When we walked into the school, Piper was in heaven. Not because of the costumes, or the people, or the goodies. No, it was because she could run. And run. And RUN.

And once she started, she. didn’t. stop.

Lemme tell you, Mom and I are EXHAUSTED tonight.

But, anyway, the party this morning was a lot of fun. There were probably 20 classrooms with a few high schoolers in each that were “running” themed games for that room. And they had LOTS of candy.

She got to play horsie:P1110541

…and kick balloons:P1110563

…and talk to Burt (which she, by the way, totally figured out that there was a person inside- she was trying to reach through the eye holes to the poor girl inside…):P1110571

Piper was, eventually, so exhausted she couldn’t breath, so we left and headed to lunch.  After refueling at Chipotle, we went to a few stores not too far, including having ice cream at Costco. 

But was it time to go home?  Nope.

Next on the docket was Halloween Party #2.  This time, though, Addy got to dress up, too. 

And I think she’s probably the cutest ducky I’ve ever, ever seen.




I think the day properly prepared Piper for real Halloween next week.  Practice makes perfect, after all.

Friday, October 21, 2011

A Day in the Life

We met friends at the shopping center this morning to play.  Piper decided to get brave and run on the raised garden beds.  With her baby.  And then proceeded to make her baby crawl on the flagstone.  She’s a slave driver, that one.  Addy was, therefore, relieved that she got to enjoy the sunshine from the comfort and safety of her car seat.


IMAG0628I have to admit- I laughed out loud at this one…



IMAG0611This picture cracks me up because she was telling the guy walking by- the complete stranger walking by- to please be quiet because her sister was asleep in the stroller.  Bossy?  Umm, yeah.

Thursday, October 20, 2011

Eye Problems and Ophthalmology Appointment

A few days ago, the girls and I were walking around the store and Piper spotted a balloon.  On the ceiling.  On the ceiling of a big-box store.  And THEN she noticed that the balloon had dogs on it.  The child can spot a dog from a mile away, I swear. 

Kids with Ds have a higher incidence of eye problems than the typical population.  They are the same types of troubles that all kids have, they’re just more frequent.  The estimates vary, but I’ve seen numbers as high as 70% of individuals will need glasses for refractive error (where the eyes just don’t see as well as they should.)  Other, less common, issues are strabismus (which is when the eyes don’t align correctly), nystagmus (when the eyes shake as they’re trying to focus), amblyopia (“lazy eye”), and cataracts.  Some of these are blamed on that low muscle tone that I’ve talked about before. 

Because of the higher risk of having problems, kids with Ds see the ophthalmologist routinely instead of waiting for problems to manifest.  

We first took Piper when she was nine months old; she was very borderline for needing glasses, and just barely made the cutoff that our doctor considers glasses.  Her doctor said that her eyes weren’t quite bad enough to make her want to keep the glasses on, so we’d wait a few months and see what things looked like then.  We went back in October last year, and her eyes got remarkably better.  Like, way better than anyone had anticipated.  Not normal, but good enough for a one-year-old to not worry about glasses just yet.  The doctor theorized that, because she was a preemie, her eyes were needing just a little more time to “shape up” than they should have. 

Yesterday was our next follow-up.  I can’t say that I really look forward to these appointments because it requires them to dilate her eyes (which she HATES).  It’s not the dilation part itself, it’s the time it takes to get in-and-out of there that kind of stinks.  We didn’t do too bad yesterday- just under two hours… 

Anyway, we went in and sat with a nurse first who took a peek at her history and made sure that nothing had really changed.  They dilated her little eyeballs, she cried, we walked around the hospital, and then came back and watched a movie in the waiting room (on a side note- have you ever noticed that the level of difficulty to entertain your child is inversely proportional to the need of you being there???)  Anyway, they finally came and took us back and the tech looked at her, sent in the fellow (who’s really nice and supposed to start next year full-time; they’re going from two doctors to FOUR, for anyone who’s fed up with the wait to get into the clinic…), and then the doctor came in. 

Holy smokes- the kid’s eyes are NORMAL.  She had a +1.0 on both sides, which isn’t enough for glasses on a toddler.  He said that she’s the picture for why he waits to put glasses on kids if they don’t REALLY need them.  Hot dog!

It’s not to say that she won’t end up with glasses at some point.  He said that now his biggest concern is to make sure that she can see really well when she goes to school.  So, we’ll keep plugging along and keep going back every year, just to be sure. 

And now that Piper’s in bed, a day and a half after her appointment, her eyes are finally starting to not be dilated.  They say the lighter the eye, the easier they dilate and the longer they’ll remain, but good grief.  And because she was dilated, the few pictures I was able to take from my phone all made her look like a creepy bunny a la Monty Python or something.  So I’ll just leave you with this one because it’s cute and I haven’t posted it yet.  She’s panting because she was HIKING, but more on that later…


Wednesday, October 19, 2011

NDSC 2012

Next year’s Down Syndrome Congress is in Washington, DC- how fun is that???

It’s also the 40th anniversary of the conference, so it promises to be a big one.

Piper and I will be there, and we think we’re bringing Daddy, too.  I’d love to know who else is planning on going!  I think it’d be a kick in the pants to have a bunch of the bloggers there!

Are YOU going???

Tuesday, October 18, 2011

A Favorite piper-ism

Piper’s an overly cautious child.  As a result, she gets very few bumps and bruises.  As in, I can count the number of skinned knees on one hand.  And have fingers left over. 

So man, oh man, when she does get an owie, we know about it.  And long after that owie has healed, she still points it out to us to make sure we haven’t forgotten. 

I haven’t decided for sure if her preoccupation with the healed owie site is because she’s flabbergasted by her body’s ability to heal itself or if she hopes that it’ll reappear so that she can get some more sympathy from it.

The funniest thing, though, is when she tries to kiss her skinned knee.  That takes talent, my friends, real, true talent.

IMAG0496Piper- where’s your owie?

IMAG0500It still hurts her feelings- can’t you tell?

Now it’s to the point that, if you ask, she’ll go looking all over her legs for something to point out to you.  Good thing the kid doesn’t have freckles like I do; she’d think they were all worth a few sympathy points…

Monday, October 17, 2011

Effects on Siblings

When Piper was first diagnosed, I was sad.  I was confused.  And, frankly, I was mad.  Mad that, I thought, it meant we weren’t going to be “able” to have more kids.  I didn’t think that we’d take “the risk” of having another child with Down syndrome.

As time wore on, we (obviously) figured out that it was hogwash.  I remember the night that little light switched in my brain; we were picking out furniture for Piper’s nursery and decided that we should spend a little more and get something nice so that it would last for the other kids. Of course we could have more kids; having Piper first in no way precluded us from expanding our family.  Why should it?  And if, by some luck of the draw, we did  have another child with Ds, we were okay with that.


There are some on the outside who insist that “making” a sibling “cope” with their brother or sister who has Ds is a negative thing.  That they will grow to resent them.  That it takes too much of the parents’ time away from the “well” sibling.


There’s a wonderful doctor in Boston who specializes in Down syndrome.  Dr. Skotko is one of the leading individuals who fight for appropriate representation of individuals with Down syndrome.  His work is focused on forming the best medical practices for our kids and helping medical professionals understand more completely what the diagnosis means.  He understands the ins-and-outs the way that few people do.  But what makes Dr. Skotko so unique?  His sister has Ds. 


He and some colleagues have recently completed a series of studies that focus on family perceptions of Down syndrome and their feelings toward a family member with Ds.  The first was the parents’ perspective, the second was the sibling perspective, and the third was from the perspective of individuals with Ds

The sibling study was aimed at kids 9-12 years old and 12 years and older.  They asked both “on a scale of one to x, how would you rate…” and open-ended questions.  In both age groups, the “approval rating” across the board was, well, high.  Quoting from the article itself (which is worth the read, if you haven’t):

  • The vast majority of brothers and sisters love their siblings with DS and are proud of them.

  • The vast majority of brothers and sisters feel that their relationship with their sibling with DS is a good one.

  • The vast majority of brothers and sisters would not trade their sibling with DS for another sibling who did not have DS.

  • A minority of brothers and sisters feel sorry for their sibling with DS and are embarrassed when among friends or in the public.

  • The majority of brothers and sisters are comfortable assuming increased responsibilities, and a vast majority plan to remain involved in their sibling's life as they both age.

  • In general, the vast majority of brothers and sisters feel that they are better people because of their sibling with DS.

It should be noted that “vast majority” was 90%+ for almost all areas.  We’re talking vast majority here, folks.  The typical siblings often have very tight bonds with their brother or sister with Ds (there are some really great blogs that center around that dynamic; this is one of my favs.)  Some other studies have shown that, when there’s an individual with Ds in the family, the other siblings are often more compassionate, caring, and have a broader world view.  And isn’t that stuff that we all want our kids to be?


And as for our girls?  We, obviously, have no idea what the future holds.  I don’t know what Adalynn will think of Piper in 5, 10, or 20 years.  We hope, though, that they’ll be more in the norm than not.  For now, Addy offers Piper nothing but looks of adoration.  Piper does the same for Addy, and is already showing signs of being her protector.  Piper tells me to be quiet if Addy’s sleeping, to feed her if she’s crying, and always makes sure I remember to get her out of bed in the morning (like that’s ever happened…  I’ve decided to tell myself that she’s just eager to see her sister, and not that she’s questioning my parenting skills…) 

We’ll do everything in our power to make sure that both girls are loved the way they need to be loved.  That they are pushed to the extent they need to be, and have expectations that are appropriate for them.  That they both get to do things they want to, but that they also understand what it is to be in a family, and that sometimes that means sacrificing for someone else.   

It’s no different than how we were raised.  It’s no different than I ever expected to raise our kids- diagnoses or not.

Teaching love and acceptance- isn’t that what parenting is all about?


Sunday, October 16, 2011

A Day in the Life

Yesterday we got to go to a wedding for one of Luke’s friends.  It was up in Boulder, so we spent the day messing around up on that part of town.  We even met up with my roommate from college- it was really a fun day!

The wedding was on a farm on the outskirts of town.  The weather was perfect.  Piper got to run to her little heart’s content (which was good after a day of being in the car, eating lunch, shopping, going back in the car…)

The leaves are just starting to change here- with the sun starting to peek over mountains at sunset, it really made the trees glow.  Piper was only moderately cooperative, which kind of bums me out, because it was so pretty.  She was much less enthused about posing for a picture than she was trying to figure out how to get into the little pond.  Or, as she called it, “the bath.”



P1110435You can sense her enthusiasm, can’t you?  I think she may be saying “get that gosh darn camera out of my face and let me have a bath.” 

But the absolutely best part of all (other than, you know, the wedding)?  They had chickens.  Bunches and bunches and bunches of chickens.  And a half dozen turkeys.  And a pygmy goat, who I’m convinced was possessed.

We walked over to the chicken coupe once and then went to explore some more; Piper kept finding her way back to the chickens.  At least she wasn’t trying to take a dip anymore…P1110439



P1110447I love this picture because she’s saying “bawk bawk bawk”- you know, like a chicken talks.  (So, evidently, I’m really bad at typing in onomatopoeia…)


And then the little goat finally came out to see us.  We had to convince Piper that it was not a cow.  I think she only partially believed me.  P1110449

See?  I told you he looked possessed…

We all sat on hay bales in the middle of the field for the ceremony.  It was completely not traditional, and one of the sweetest ceremonies I’ve seen.  The girls even behaved themselves (okay, so I bought Piper off with a fruit snack- teeny piece by teeny piece.)  We sat at a table and could watch them finish up with photographs.  And while Piper ran around some more…P1110475…I got to nurse Addy with this in the backdrop:P1110468


Such a sweet night!  Congratulations, Jon and Sarah!