It’s Baaaaaaaaaaaaack!

It’s Baaaaaaaaack!  School, that is.

Sienna’s pretty excited about school this year.  She’s going to be an 8th grader…” Top of the Totem Poll”…Top of the proverbial junior high food chain.

She wasn’t too pleased with the school clothes shopping.  I wasn’t either. 😦  This is the first year that our bags weren’t filled with matching and coordinating outfits.  I love seeing them in matching outfits.

At 5’4″, Sierra is easily in the Junior’s clothes, but unfortunately, Sienna hasn’t really grown much in a while.  She’s gained a bit of weight, so that’s nice, but she still has the waist of a 2-year-old.

The doctor said she was most likely done growing now, so we’re really focusing on forcing her to do as much on her own as possible.

We don’t really have to buy any new jeans or shoes.  We found a few basic tops that we can accessorize with some necklaces and cute earrings.  She really wanted some bangle bracelets like Sierra was getting and cute belts, but they were all too big.  So, I’m going to call on my jewelry making friends and scour the internet to see what I can find for her. 🙂  Too bad I didn’t take Home Ec. in school. Haha

We did find a fedora, though.  She can’t wear it to school, but it was just too sassy for me to pass up! (Size 12 months, btw hee hee)

Next up is hair cuts and a few more school supplies!


Little People Conference 2012

We were blessed enough to have the Little People Conference in our state this year.  So, it wasn’t too expensive for us to attend.

It was a wonderful week. Sienna made new friends and was delighted each time someone recognized her from the media coverage.  She was on Cloud 9.

We learned so much about the advances in the genetic testing that’s currently being done.  In just a short while, the geneticists have discovered another mutation that allowed them to identify another form of Primordial Dwarfism.  That is so exciting!

Sienna’s particular form of Primordial Dwarfism is still unidentified, but this discovery means we’re on the right path.

Many have asked me why this is a big deal.  Why does it matter if they identify a particular type of Dwarfism?  Each form of Dwarfism has its own medical concerns.  So, identifying someone’s particular variant of Dwarfism affords them the ability to seek the appropriate medical testing and take appropriate cautionary measures if needed.

When we returned home, Sienna almost immediately started bickering with her sister.  It took me an entire week to figure out why.

She had been in a “safe zone”; in a bubble per se.

At the conference, Sienna was able to feel judgement-free.  She was no longer the shortest in the room.  She wasn’t treated like a baby.  She wasn’t the only one.

When she came home; she was back in the real world.  Back to staring at people’s backsides.  Back to heavy doors and restaurants automatically offering her a kid’s menu.

So, we’ve gotten her to talk through her frustrations a bit better and have forced her to be even more independent than she already was.

She’s a resilient kid and astounds me with her joyous attitude always!

Tall Enough to Pay

At the movies recently, someone made a comment to us about how it must be nice to save money on admission since Sienna looks like a young kid.  Since it was someone we just met, I didn’t really stop to correct them.  I just gave a crooked, but polite smile and brought the small talk to an end so we could get on our way to the movie.

Some people might be okay with not paying the adult price for her ticket, but my husband and I collectively decided to always pay the appropriate price for Sienna despite how young she looks.  (Disclaimer: Most of the buffets we frequent charge us for a younger kid despite us telling them her age since they know she won’t eat as much.)

We feel that if we don’t pay the appropriate price that it’s teaching the kids that it’s okay to cheat someone out of money.  It may seem easy to just go with the flow and pay the cheaper price, but we try to show the kids that the right way is usually the harder way.  And that just because someone doesn’t know you owe them more money, doesn’t mean you should take advantage of that.Image

7 Things You May Not Know About a Twin of Someone Special-Needs

7 Things You May Not Know About the Twin of Someone with Special Needs

Most people know that Sierra and Sienna have been interviewed many, many times about them being such a unique pair of twins.  Recently Sierra was asked what question was most often asked of her when being interviewed.  She said the one that sticks out the most was “How much do you love your sister?”

It got me to thinking that it’s unfortunate that the question that sticks out to her is really about her sister and not about her.  Since most posts cover topics about Sienna, I thought I’d do one from Sierra’s perspective.

1. I’m still a kid.  I’m growing up faster than I have to.  I feel a natural need to care for and watch over my twin, so I’m growing up faster than most of my peers.  So, even though I act older most of the time, give me an opportunity to be a kid, make mistakes like a kid and dream like a kid.

2. I’m still my own person.  My twin and I like many of the same things, but we do like some different things and want to do different activities.  So ask about me sometimes, not me as the twin of someone special.

3. Please don’t make me choose between you or my sister.   Yes, my sister may be immature at times or do things you don’t understand, but please be gracious and patient.  I love my sister more than anything in the world and can’t tolerate her mistreatment.

4.  We’re individuals, but we’re also a packaged deal.  My twin and I understand that we have different friends and that I’ll be attending events with friends I don’t have in common with my twin.  However, if you know both of us well and you don’t invite me to something because you can’t “handle” inviting my twin, that’s going to show me your true colors and I will know you’re not really that great of a friend.

5.  I feel ignored some times.  My special-needs twin gets much attention because she’s cute and she requires additional attention for schooling and some daily activities.  I’m a great kid, too.  Please remember to see my accomplishments and make sure you say “hi” to me, too.

6.  I’m doing my best to find balance.   I’m doing my best to discover who I am as a person while being sensitive of and understanding how lost my twin is without me.

7.  I worry.  I know my life will eventually contain fairly normal situations such as dating, graduation, marriage…and I’m not sure what the future holds for my twin.  I worry about growing up and my twin feeling left behind.  Please know that I don’t care if you agree with decisions I might make in the interest of my twin on how my life is shaped.  I understand that having a twin with special needs requires some sacrifices.  I love my life and wouldn’t change it!

Being a twin is a unique bond that I’m blessed to have the opportunity to have.

Special Challenge Day

Special Challenge Day!!

Yesterday was our local Specially Challenged, Challenge Day.  It’s always such an amazing event.  The Special Olympics lends the torch for the children to carry and the students get Special Olympics medals after their events.

The day always begins with the students running through a giant blow up mascot like the football players do.  Then comes the singing of the National Anthem.

Sienna had the honor of being one in a trio singing the national anthem this year!  We practiced and practiced.  After all, it’s a pretty tough song.

She was so pumped up and ready to sing.  She stood between the two other classmates and the officiate handed her the microphone.  The music began and the officiate began singing with them softly to help remind them of the words.

Then the officiate stopped singing.  The mic started squealing.  Uh oh.  The kids were thrown off focus and couldn’t remember the words.  It was pretty heartbreaking to watch.  Sienna had worked so hard on trying to remember the words and she was still trying, but the words just weren’t coming out right.

In a very touching moment, the very soldier-esque ROTC leader walked up behind them and started singing with them without missing a beat.

Voilà!  The words came back!  They finished the anthem!  That gentleman exemplified grace and patriotism.

Something else that amazed me yesterday was the kids’ spirits.  The athlete’s creed they recite just before the races begin talks about students wanting to win, but if they don’t, they pledge to be brave in the attempt.

It’s often said that there is a “wussification” of America going on right now.  Without going too deep into that right now (I’ll touch on that in a different post), I have to agree that many children now aren’t taught to deal with challenges and disappointment like in the past.  They’re now taught that everyone gets a trophy and we shouldn’t keep score.  They think everyone’s entitled to win.  Well, that’s not how the real world works.  These special kids know that first-hand.

While each student did receive a medal, there was a 1st place, 2nd place and 3rd place winner.

Every student needs to learn from the strength these kids have.  They have accepted that not everyone wins 1st place, but that the important thing is that they did their personal best.

They are the epitome of learning to be happy with the person God made you to be and of giving it your all, all the time.

They are shining examples of beautiful souls.

Sierra & Sienna’s Vocal Showcase!

The girls had their vocal showcase this past weekend.  I could not have been prouder!

They practiced and practiced.  I have to admit, I was a bit nervous they wouldn’t remember their words.

Their vocal coach was so wonderful.  He discussed with me what points I’d like for him to say about each of the girls when they were on stage.  He wanted to make sure to say something non-twin related about Sierra.  I found it very profound that he recognized that Sierra is often overlooked as being “just Sierra” and not “Sienna’s twin.”

Sienna often gets so much attention because she’s so cute and she’s certainly one-of-a-kind.  So, Sierra sometimes feels like she’s over looked.

We watched the first half of the vocal showcase and were entertained by the amazingly talented students.

Intermission.  The girls were up next!

Sienna confidently sashayed on stage.  She was so excited to be wearing high heels!

She answered her vocal coach’s questions and blushed as he sang her praises.  He introduced her song and started playing.  It was the moment of truth.  Would she remember her words?

She did!  She did great!! Her voice cracked a bit during a couple parts, but she just kept going without missing a beat!  Of course, the crowd was thoroughly amused and thought she was so cute.

Then it was Sierra’s turn.  It was amusing for me to hear people behind us say, “That’s the twin?” They couldn’t believe the height difference.

Sierra glowed as her vocal coach introduced her.  He asked her a few questions to which she had answers that made the audience chuckle.  He asked one question in particular that had the audience clap in approval.  He asked her if she’s ever nervous when she’s on TV.  She said, “No, people either like me or they don’t.”  Proud Mama Moment! J

As she began to sing, the audience fell silent.  She nailed her words and nailed the notes.  The audience was moved.

After Sierra’s solo, they had the opportunity to sing a song written specifically for them by Marla Martin, a college friend of mine.

Side-by-side, the girls sang the song “Sinny-Sized”.  It’s such a cute and touching song about the girls being able to take life head-on as an unstoppable duo.  The audience was in tears!

It was an unforgettable night for the girls.  They felt special and they were able to entertain and touch people’s hearts.

Choir Field Trip!

The long awaited choir field trip to Fiesta Texas finally arrived.  Sienna had been to Fiesta Texas once before and remembered having a great time with the family, so she was ecstatic when she learned that was where they would be going after their final choir competition.

Sienna knew you had to have the proper behavior and proper grades in order to go, so she made sure she would make the cut.

She had the grades, the proper conduct marks, the heavily altered choir dress and she was ready for the field trip!!

We checked in at the school super early at 5:00 a.m. to catch the buses.

Sienna walked into the choir room and was greeted with “Hey, Sinny!” & “Sinny!” It was nice to see her greeted with such enthusiasm.

The seats on the bus were assigned, so everyone took their seats.  Sienna was a couple rows in front of my husband and me.  She looked super cute with her feet dangling off the seat.  She played on her tablet and engaged in conversation with those around her.

Once we arrived at the location for the choir competition, the kids quickly raced to the changing rooms to change into their concert attire.

Sienna was a bit shy in the changing room and chose to change in the corner.

One of the other girls sweetly offered to braid Sienna’s hair.  She did a wonderful job, too!  Sienna looked so pretty in her dress with her hair braided back.

They did a wonderful job during the concert.  They actually got such a good ranking that they won the overall award and took home a super big trophy!

After the competition, it was time for Fiesta Texas!!

The kids were instructed to get into groups of no less than 3 and check in a pre-determined times.

I was worried (and I think Sienna was worried, too) that Sienna would get “stuck hanging with her parents” the whole time rather than spending time with friends.

That wasn’t the case!  An amazing couple of girls gladly paired up with Sinny!  Bonus! The mom who was with them was fun to hang with, so it was great for us, too.

We grabbed some food first and then it was time to hit the rides!

This is where I thought it would get really tricky.  Sienna’s usually not tall enough to ride the regular rides and certainly doesn’t weigh enough to securely fit into most of the chairs.  I was afraid the other girls would get frustrated.

They didn’t!  I was so impressed with them!  They politely took turns doing rides suited for Sienna and games she could do and Sienna and I waited for them when they did rides she couldn’t’ do.

It was fantastic!

Those girls treated Sienna just like any other classmate.  Not once did they make her feel bad for not being able to do the big rides.  The major thing that impressed me was that they didn’t treat her like a baby and they weren’t patronizing!!

What amazing children!

I wish all children shared the same “blinders” as those girls!!

Cheerleading Woes

So, I’m faced with a dilemma and I’m looking for honest opinions to help me process my decision.

Sienna has dreamed of being a cheerleader for years.  Because of her obvious size difference and physical limitations from being a Primordial Dwarf, I’ve always been hesitant.  The last thing I want to see is her being the “flyer” of the team.  Which, I’m sure she would inevitably be.  (I admit, that’d be awesome to see if I were an on-looker.)  I know there are other dwarfs who are cheerleaders, but the ones I know have had gymnastics training and Sienna has not.  In addition, those dwarfs do not have a learning disability that I know of.

As she’s gotten older, the delay in her cognitive and emotional development is becoming more apparent.  So, I also wasn’t quite sure if she was mature enough to handle cheering with girls her own age.

However, there are times that she grasps such deep concepts that I challenge any adult to be able to master.

Many things with her are a mystery.

So, here’s the situation.

Sienna came home from school a few weeks ago with a flyer for a Special-Needs Cheerleading class.  She enthusiastically handed me the flier while exclaiming, “It’s cheap, too!”  I couldn’t help but chuckle as she has learned that Mom is quite frugal.

She was right.  It was cost-sensitive (as opposed to many cheerleading programs) and the times the class meets fit well within our schedule.  So, I e-mailed the director for a bit more information.

I felt confident about the director and the program and was willing to give it a shot.

I took Sienna to the first class.  She was so ecstatic.  She was a bit nervous, but went right in.

The cheer helpers and director were fabulous.  It seemed like a wonderful establishment…but I was still hesitant.

On the way home, Sienna said, “I can’t believe I’m an actual cheerleader!”

You’re probably asking, “What’s the dilemma?”

I’m known for shooting for challenges…For not settling for easy…For not allowing “handicaps” to be excuses…For pushing people (including my kids) to be nothing than their absolute best.

So, by allowing Sienna to be in a modified cheerleading class, am I saying to Sienna that she’s not capable of being in a non-modified cheerleading class when we haven’t even tried a non-modified class?

Looking at safety and actual physical capabilities, I know Sienna would be best in the modified class, but does that feed her spirit?

If she goes into the non-modified class and can’t keep up with the other girls, is she going to get even more frustrated?

Being pretty unfamiliar with cheerleading, I have to guess on what to expect.  So far I’m leaning towards checking into enrolling her into a younger aged class that might closely match her physical abilities, but will challenge her to keep up with those who are more advanced than she is.  However, putting her around younger girls isn’t going to inspire her to mature.

Now do you see why I’m stuck?  Do I put her in the modified class and allow her to help the others and be a leader in the class; do I put her in a younger aged class to test it out; or do I put her in something else altogether? (I’ve always tried to get her to opt for the dance team rather than cheerleading, but she doesn’t seem too excited about that alternative.)