Super Heros

Super Heros come in all sizes.

  Some Super Heros go to work.

And some Super Heros save the world.

Some Super Heros ride bikes and wear cowboy boots.

And some like to giggle.

Some Super Heros are tough.

And some are bossy.

Some Super Heros cry.

Some Super Heros like to toss acorns.

 And some need hugs.

 Some Super Heros are partners.

And some work alone.

Some Super Heros are happy all the time!

 And some are Super Moms.

Some Super Heros are sisters.

 Some Super Heros like bag:)

And Some Super Heros Just Happen To Have 47 Chromosomes!

Why us?

There are many times when I sit and think, "Why us"?

Not in the "whoa is me", "throw me a pity party", "how can this be happening to our family", kind of way.

But rather, "How did we get so lucky, to be blessed with such a wonderful daughter"?  "Those other people are missing out!"  And how do we share HER, with them!

 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future,"  Jeremiah 29:11

I wonder what God's plan is for our girl and what his plan is for our family.  What blessings are going to come our way because of her?  How can we use Down syndrome to our benefit and share that benefit with other?  What does her future look like?

Don't get me wrong....there are days that are difficult, but there are days when my "typical" children give me a run for my  money too!  And it's true, that she has many more days that look like this:

 And this:

than most kids.  But there are plenty of kiddos out there with 46 chromosomes that spend far more time in hospitals and sick than our girl.  There are plenty of kids with 46 chromosomes that have delays and hearing impairments.  But in the end, that little extra chromosome doesn't mean much.

From the start, we have just loved her as AUBREY.  Because THAT is who she is.  Down syndrome is a label, like her blood type.  It isn't WHO she is.  Do we deny that label?  No, but we don't dwell on it either.  We don't use it as an excuse, or as a crutch.

We expect a lot from our girls and she is no different.  She is four.  She is a big sister and those things come with a lot of expectations and a lot of responsibility.  We treat her "typical" and make adjustments as necessary.

I don't know what her future holds.  I don't know whether she will learn to drive, or go to college or live on her own or get married.  Truth is, I don't know that my other children will do those things either.

What I do know is that her family, her friends, will support her and push her and accept her to be the best Aubrey that she can be.  And in the end, as long as she is happy, that is all that matters.

I want that for all my girls.  I want them to be the best Alice, and Katherine, and Ella, and Emelia, that they can be.  And I want them to be happy.  It doesn't matter where they live or what job they have, as long as they have a passion for life and what they do....I'll be happy:)

Life...

I wonder sometimes, if she knows how much she has to work for things.  I wonder if she realizes how easy things are for others.  Does she notice that Emelia is doing some of the same things as her....but with ease.  I wonder if she knows, but doesn't care.

{she worked so hard to get that chair in the kitchen, over to the fridge and climb up....all to realize, she still wasn't strong enough to open the doors}

She faces more obstacles than most people.  She works harder than most people and she succeeds at what she works for.  But she faces disappointment and frustration.  That's part of life for her.  

But I think that people who face challenges and obstacles and frustrations and a tough road, but overcome them, are better people for it.  What doesn't kill you, makes you stronger, right?  

We think you're the best Aubrey and we are so proud of you!

*for the record, yes, she is wearing underwear, no she is not potty trained.  it happened to be a day that I was eager to get it done and just do it....after we went through an entire pack of panties in an hour, and I cleaned up all those puddles....I gave up...*

Therapy: Siblings

I never really believed in all that birth order mumbo jumbo.  I do however feel that each of our children was born to us at just the right time, to fill a certain roll, and to play a certain part in our family.

 Aubrey is #4.  I think that it is a great blessing for her to be #4.  She has 3 big sisters to keep up with all the time.  And whatever they are doing, she is sure to be trying to do it too.  Girl is motivated and determined and I think that THAT is better than any therapy we could pay for...though technically we pay for her older sisters, so I guess we do pay for this wonderful therapy.  (and we payed a lot for the new pool therapy she will be getting next summer:)

 She isn't afraid to try new things and there are rarely tears over trying new things anymore.  I'm so proud of the practice that she does on her own to get better at these task.  She willingly accepts help to be shown how to do something and then with practice...she tackles these challenges.

 And once she has it mastered, LOOK OUT, cause Sister is coming and she won't let anyone stand in her way!

And staying ahead of #5 is hard work too, but she does that too!

A touching story

I'm tired tonight:)  We have had a very busy weekend with Grandma Smith.  But I won't leave you without a post tonight.

We have followed the story of Pudge and Biggs for a long time.  Just recently I came across this story on her blog:  http://pudgeandzippy.blogspot.com/2009/08/ties-that-bind.html

It is a beautiful story about how Courtney and Justin came to be a part of the Down syndrome community, and ultimately lead them to start their family with the adoption of not one but TWO kiddos with Ds.  Head on over and read Courtney's story.

Embracing Diversity

We have 5 girls.  We know about the American Girl Books and Dolls.  We've been to the store in Dallas...many times.  I love that my girls fell in love with the books first and the history that each character contains and the diversity of her life here in America.  

You can by each historical character's doll, you can also create a "Just Like Me" doll that has hair like you and skin like you, etc.  You can even choose glasses and earrings, to make her just like you:)

This year..."American Girl has taken a  courageous step towards diversity with the launch of dolls with hearing aids, as well as dolls without hair, signaling to the disability community that little girls who are differently-abled are important enough to have their own personalized doll experience."

(Read the full article HERE.)

I love how accepting the world has become and that there are companies out there that are embracing our children's diversity and special needs.  It speaks volumes to this mama, and hopefully to the world, about accepting my girl....just the way she is....hearing aids.....extra chromosomes and all.

Wordless Wednesday: Chalk

Fitting in to another community

As I was trying to come up with a good post for tonight....my heart keeps tugging at hearing impairment topics, for two reasons.

1) When we found out that Aubrey had a  mild hearing loss, we felt sort of alone in our diagnosis.  We didn't know any other kids with hearing impairments or blogs to follow, like we did when we got her Down syndrome diagnosis.  We had no one to look up to for hearing loss. I hope that somewhere out there, we can help other families navigate these waters.

2) It is where we are in our life.  A lot of what we do revolves around the fact that she is hearing impaired.  Part of her day is putting her hearing aids on, making sure she STILL has them on (ie.  has not taken them off in a store and set them down on some random counter:), making sure we take them out before bath, making sure they sound right and the batteries are good and that we have back up batteries.  We take her to a special school and we go to sign language class and I translate things for others into sign language.  It's where we are at....

I think it is like that for everyone.  Your lives revolve around your family and whatever it is that they are doing.  Some weeks it is more about Aubrey and what is going on at her school and which appointment she needs to get to.....and some weeks it's about the big kids and the Living History Fair that they are participating in and whether or not Mom has made the costume for that!

When Aubrey was born and we got the confirmation that she had Down syndrome, we became part of a pretty special community.  I am so proud to be a part of the Down syndrome community.  I'm proud of my daughter.  And when we got her hearing impairment diagnosis, we joined another community.  And I'm also proud to be a part of the Deaf Community as well.

This life with Aubrey sure has been a roller coaster and NOTHING like we ever thought it would be....it's better and we are so blessed to have her and to have been able to open our lives up to so many new and wonderful things because of her.

Potty Training by Aubrey

I'm four now!

And I got ATTITUDE!

But I don't wear panties yet...(sigh from mom)... I been sitting on the potty ALL THE TIME.

I am REALLY good at the hand washing part!  I practice A LOT!  I also practice taking my clothes on and off, especially my pants, because that is important when learning to use the potty.

It's10pm and I'm still up....because I pooped in my diaper and since I am so good at the taking my clothes OFF part and taking my diaper OFF part....I did!  Yay me!  I got a new diaper....and then I got caught!

My daddy is NOT happy, but now I know how to scrub the carpet REAL GOOD and how to wash my sheets.

I'm learning so many new things!  Yay ME!

Siblings

Aubrey is our fourth daughter and while we hadn't planned on a fifth child, the Lord saw fit to bless us.  I think the number of kids or adding a boy to the house scared me more than the idea that we would have a baby with Down syndrome!  It didn't matter if he/she had Down syndrome and it didn't matter if he/she would be born healthy.  We had done all that before.  Once we got used to the idea of another one, we just wanted our baby....boy/girl....Ds or not....healthy or not.  Because in the end, we just wanted our baby and that is what mattered.  We got Emelia!

When I was pregnant, I sometimes found myself thinking that another baby with Ds would be fine too.  We loved all of our therapists and this way we wouldn't have to say goodbye to them.  Aubrey wouldn't have to worry about when her little sister/brother would pass her by.  There are so many wonderful things about her.  It wasn't a scary thought.

Last week, one of our blogging "friends", who happens to have an older sister with Ds, wrote a really great post about all this and since I can't say it better, I'll just let you read her post, HERE.

Sign Language: FAQ

I've gotten a few questions, so thought I would answer them in this post.

1. Will Aubrey always use SEE for signing?

When she gets close to or in high school, many of the kids transition to ASL or "Pigeon" which is a combination of the two.  The point of SEE is so that she will learn proper English, especially in her writing.  Once that is learned pretty well, they move to a "spoken" language that is "faster".

2. Where do you learn SEE signs?

*We use this book.  It is set up like a dictionary for signs.  We got ours on Amazon, HERE.  They also have a  "pocket" edition HERE.  We have both.  The big one usually stays at home and the little one I keep in the diaper bag or my purse so that I can look things up as I need to while we are on the go.

*The teacher sends home some signs for the theme that they are currently on.  This week was Community Helpers, so the sheets included:  Fireman, Doctor, Hurt, Bandaid, Dentist, Teeth, Sick, Hospital, Ambulance, Mirror, Sink, Water, Mouth, Clean, Dirty, Police, Nurse  

*We are also taking a FREE class on Tuesday nights through the school district, which I talked about HERE.

3. If I only know some ASL (American Sign Language) signs, will Aubrey know what I'm signing to her?

YES....I would say most of the basic signs are the same between the two.  And she does know some signs as ASL.  Unfortunately, she has a small addiction to THESE videos...Some are available at our library, but they are also available online:)

4.  Where should I start, if I want to learn some signs?

*Libraries have tons of books (at least ours does) and videos of course.  Most books will be ASL, but that is ok:)

*I also have a couple websites that I have used in the past or every once in awhile, when a word is not in my SEE dictionary.

http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi  This one has a main dictionary organized by letter where you can search for words.  It also has a category for religious signs, conversational phrases, and ASL for babies.

This is another good one:  http://www.signingsavvy.com/

It has a way to look up words or phrases as well as great categories to learn things like numbers, colors or states.

5.  What do I do if I don't know any signs?

Most hearing impaired or deaf people (who are older) read lips very well.  Some of the parents in Aubrey's class as well as the teacher's assistant AND her speech therapist at school are hearing impaired.  I don't have any problems communicating with them myself.  It isn't always easy for me, but I think they don't find it too challenging:)

Aubrey's hearing impairment is actually pretty mild, especially compared to others in her class.  She does really well HEARING us, even with her aids out.  We do notice that we have to talk louder or tap her to make sure she can hear us.  In fact, some people we know, don't even know that she is hearing impaired!  They are surprised when we tell them and her speech is really coming along lately.  But she still really relies on sign language as her primary language.

I'm always willing to answer questions on hearing impairments or sign language or anything else related.  I still feel so new to this Deaf Community, but I ask a lot of questions myself and I'm learning along the way too.  We felt very alone in this area for a long time, but now that she is in school and we have teachers to rely on daily and actually KNOW other kids with deaf impairments, it has made a big difference.

I hope this helps answer your questions!

Delay

My home Internet is being funny and so I can't finish my post for tonight. And doing a lengthy post from my phone is crazy hard. So tonight you are left to just enjoy the beauty of a child with Ds!

Sign Langauge: Santa

***I just want to say, we are not Santa people here.  We celebrate the birth of Christ each Christmas.  It bothers me that the school doesn't celebrate ANY holidays....but each December, they do Santa....(sigh).  I went on this field trip last year, very grumpy, but I came away with a new appreciation.***

Last year in November a note comes home saying that Aubrey's class will be taking a field trip to the mall and they will be seeing "Signing Santa" and then see/hear a Signing Choir.  She is supposed to put pictures of things she is asking Santa for in her book that they will take with them....We filled out her book and tried to get her to sign those words.

Fast forward to field trip day....this is the center of the mall where the "BIG man" was gonna be.  They make special arrangements with the mall to be the first ones to see Santa and all the schools with deaf education kids are there on that day.

The whole area is full of arctic animals.  Aubrey....measuring up = SHORT:)

She was totally unimpressed with the "ice chair".  You sit on it and it is like you are actually sitting on ice.  It was really cool!

Clearly, the falling snow in the area right before Santa was the highlight of her day!

So we finally make our way to Santa....TOTALLY unimpressed.  But I was thankful for Santa.  I was thankful that this gentleman cared enough to volunteer as Santa each Christmas because he knows sign language.  I was thankful, not because Aubrey said or signed anything to him, but because if she had wanted to, he would have understood her and her friends...THEY got to have a conversation with him.  

LANGUAGE is such a big deal.  Your ability to communicate and understand and be a part of the hustle and bustle of every day life.  It's important.  And whether or not I believe in Santa or what he represents, didn't matter.  What mattered is that this man thought enough of my little girl, that he came down to the mall and spent the day with our kids.  And that ranked pretty high in my book.

 Then we went to see the choir and I was almost in tears.  These kids spend MONTHS learning Christmas songs in sign language, so that they can put on a performance for my girl!  (and all the other deaf education kids:)  They had about 8 songs.

 It really was amazing and if felt so important to me, to find opportunities like this for her since she is hearing impaired.  As important as finding and supporting opportunities for her because she has Down syndrome.

Supporting and Advocating and Encouraging and Loving our kids, no matter what other labels come behind their name, is important. And when others go the extra mile to do those things for MY daughter, it touches my heart and I appreciate it.

Because even if they didn't say anything about that Santa or that choir, they felt important that day and they were able to really take it all in and enjoy themselves. 

To all our friends and family who treat Aubrey "normal", THANK YOU.

To all our friends and family who sign with her, even if it is just a couple words, you know how much she loves that.  The big smiles that she gives you, is her way of saying THANK YOU for "talking" to me:)

Signing Santa will be at Willow Bend Mall, Plano, TX on December 6th, 2012.  We will be there with bells on....if you want to join us!