Letters to Santa

Olivia had her Christmas list ready about a week ago.  She's been chomping at the bit to get it out to Santa. Her list included Flipeez (ridiculous winter hats you can only buy at Walgreens), Mooshka doll, doll stroller, shopping cart, a cash register and scanner.  

So I told Juliana that we needed to get busy and write her letter so we could get them in the mail.  Without missing a beat, she tells me on her computer, "That is too hard.  I need help.  How many?  That is too hard."  I told her we would work on it together but I needed her to start thinking of something she would like.  

So coincidentally, the next day, guess what her school team decided to work on.  So they started it off as a shared writing.  They asked her, "How do you want to start it out?  Have you been good? etc" So they wrote this part together.  Then they gave her the sentence starter "I want a _____" and then using her alphabet flip book, she spelled C-A-R.  They asked her if she was done, thinking that she couldn't possibly be spelling car, right?  Maybe she meant C-A-R-D-S, like goldfish or something.  She responded with a nod - yes.  So then they asked her if she wanted a small car, a minnie mouse car, a remote control car - to all of which she responded NO.  So then Mrs. Broome (OT) asked, "OH! Do you want a power wheels so you and Olivia can go riding around?" to which she smiled and nodded a huge YES!

 I'm really hoping Santa has it in the budget to get this girl a car.  She has been a VERY GOOD GIRL!

Chili's Give Back Day!

A huge, huge thank you to all that came out to support Team Juliana at Chili's!  We had so much fun and just appreciate so much everyone who came out.  It has become a reunion of sorts and we are so blessed to have so many people that want to help us find a cure!

Lively Team!

 Abel, one of my favorite former students!

 Brandenburg Team

 Travis Team

 Bazluki - Former Brandenburg Team

 Mrs. Marquez - one of Juliana's amazing teachers.

And more Team Lively!

Disney Avenger's Half Marathon

 I can't believe it's possible, but the Avenger's Half Marathon is now my 4th Half marathon.  For those who know me, you understand how remarkable this is.  I am not now or ever have been a runner.  I don't get that "runner's high", I don't have these long reflective runs that clear my head.  I run honestly for three reasons: 1. Because I think of Juliana.  She does so much therapy and it's hard. It tires her out and yet day after day, we make her do it.  I figure it's the least I can do.  2. It raises money and awareness for Rett Syndrome and it gets us just a little closer to a cure.  and 3.  It allows me to spend time with some of the most amazing women I know.  And we get to laugh, and share stories, give and get advice and recharge our batteries before heading home.  So I get all that for the low price of 13.1 miles.  I'd say it's a steal of a deal.

Look who I ran into in Dallas!  I'm sure it's 5 o'clock somewhere!

 And then we found this one once we got to Orange County.  Double fisted Tina!

 First stop after drinks and lunch was picking up our race bibs!

 And then, like a bunch of old ladies, guess what we did.........we all conked out in our hotel room at about 9pm.  I know kind of lame, but you know what, we don't often get to do that, and it was actually 11pm Dallas time.

The next day we decided to spend some time at California Adventure.  Because of course that's what you do the day before a half marathon that you totally haven't trained for. P.S. - gorgeous weather!

First ride, against Niki's wishes, The Tower of Terror!  To bad you can't see Tina's face:(

Had to take a picture of Doc for Olivia!

 And then of course Mickey for Juliana!

Checked out Monster's U

 And then it was onto Radiator Springs!

 And then it dawned on me that I had still never tried a Dole Whip.  You know that thing I always see on Pinterest where people are trying to recreate this amazing dessert.  So I look at Tina (our resident Disney expert) and asks where we can procure this dessert.  And she tells me we can't!  Why? Because we are in California Adventure and you can only get those in Disneyland.  WTF!  This is unacceptable.  I did not come all the way from Dallas to be denied this tasty treat.  So I ask an employee if this is true.  She confirms it.  I ask her if there is any way she could go in and just buy me one.  And guess what she did. . . . . . . Yup, she let us in Disneyland!!!! Just like that she opened the gate and let us right in for the Dole Whip.  So we ran over to the Tiki Hut or whatever it's called and stood in line (a long line) for a Dole Whip!  Do we look a little excited?

And here it is friends!  It was amazing.

And as we were on the way out, guess what - Parade.  Darn it, I guess we will have to wait till it's over.

Then from there it was our Team Dinner.  I love these ladies.

My number one reason for being there.

And this was the scene at home.  This was Liv's best attempt at a smile.  Apparently her hands were chapped and hurting and she needed her momma.  

 And then it was GAME ON!  Morning of the race.  I unfortunately was in the last corral all by myself.  No worries I made some friends.  Check out all the people behind me!!!  I call that my buffer  - There are that many people between me and the bus that picks you up!  I can do this!

And I got this little jewel.  Apparently a good night's sleep did her good!

Minutes before starting

 Running through the park

Okay, I'm not going to lie.  This run was not pretty.  It was by far the hardest one for me yet.  The 55 mph Santa Anna winds didn't help.  At one point around mile 2, we passed a Wenchel's Donuts and I seriously thought about bailing and hanging in the donut shop.  I could taste the coffee and donuts.  But somehow I persevered.  Around mile 8 we got to run through Angel's Stadium.  That was kind of cool.

And then somehow I finally managed to finish the longest 13.1 miles of my life!

And I got my Coast to Coast medal too!

And then I had a Shock Top!

And then it was time to say goodbye to my dear friends.  What a great weekend.  Truly blessed to have found this group!

Never would I have believed that I had earned all of these medals.  Who is this girl?

A Life Changer

So, this week we had the pleasure of having Susan Norwell in Irving ISD.  She spent one day training staff from all over the district and one day just with Juliana and her team.  I don't really even know how to begin to describe this experience other than to start by telling you that it has changed our life. It changed the way we look at Juliana and her education.  And it changed Juliana.  It gave her a new found confidence and pride in herself that I had never seen in her before.

So prior to Susan's visit, we had chatted on the phone and she asked me where I thought she was with reading.  What level I felt she was on and we talked at length about this.  Then she asked where we were with writing.  I mentioned how we do shared writing, or we ask her what she wants to write by asking yes/no questions.  And she was like, "That's good, but where is she with independent writing?"  And I had no answer.  I wanted to say, "Don't you know she can't hold a pencil?  She has no hand use.  How do you expect her to do 'independent' writing?"  I was at a complete loss.  And this is why we needed her to come.  

So here are some valuable little gems that we learned while she was here 

1. Her computer is a communication device NOT a testing device.

We had heard this of course, and I guess I always thought of it as, don't load a test onto it and expect her to take a test on it.  That sort of thing.  So we never did that.  We understood that is should always be available for her to share her thoughts or say what she wants to say.  But we were still doing it.  All of us, at school, at home at therapy.  We didn't load a test on there, but we did get it to a page (for example numbers) and then say find the number 9, or tell me how many in this set? or Tell me what animal you saw in the story?  So really it was still a test.  No wonder she didn't want to use her computer any more.  She was associating her device with having to answer a question that could be wrong.  

2. Low Tech is sometimes a better option.

I think after we acquired this very expensive device we felt like we had to use it all the time.  And don't get me wrong, Susan definitely wants her communicating on her Tobii, but it's not always the best option for what she is doing.  Sometimes low tech (white boards, index cards, your hands) are better and more efficient options.  It's quicker, you don't have to program and it leaves the Tobii free for communication and opinions, questions, requests etc.

3. Apraxia is real and Juliana has it pretty severely.

We have always known about apraxia, but I don't think I ever really really understood it.  Nor did I ever think that Juliana has SEVERE apraxia.  To wrap your brain around this is like imagining you have sever anxiety to the point that you can no longer control your body.  So someone asks you to do something, and your brain wants to respond and your body is frozen and completely unwilling to function.  How does that feel?  And how do we typically react when someone doesn't do what we ask.  We continue to ask, or ask louder or put more pressure.  Well guess what......what do you think this does to the apraxia.  It certainly doesn't help it.

So Susan has several low tech flip books.  One of them has high frequency words (I, you, want, the etc) and one is a letter flip book.  After only 3 days of knowing Juliana, Susan got her to write - INDEPENDENTLY!  I almost cried!  Ok, who am I kidding, I bawled all day long.  This is how it went down:

Susan - Juliana, look around.  Do you see?  Everyone is writing right now.  We need to get you writing too.  Just like everyone else.  

So Susan modeled how the books worked and then they were off.  Juliana chose I, on, am - from the high frequency word flip book.  Then she indicated that she needed the alphabet book.  She chose /G/ then space then /t/ /i/ /r/ /e/ /d/  I was not there, but Susan said she got the first part done quickly and by the time she got to the /r/, she was exhausted.  This is all work for her.  She is fighting the apraxia constantly.  So Susan talked her through and said, "Look.  I know this is hard work.  Let's just finish this and then we can take a break." And then after that very quickly she went to /e/ and /d/ as if to say "Yes! I want a break!"  So Susan proceeds to "Ok, now we need to edit your writing.  Let's see.  You wrote 'I'.  Did you want to keep that? or Did you mean to write I?" Juliana said yes.  "What about 'on'.  Did you mean to write on?" Juliana said no.  So they cross it out.  They proceed to do this with every part.  And this is what they ended up with.

My daughter WROTE that!  And then shortly after she conked out and took a 15 min power nap.  The possibilities that this opens are endless.  For Juliana to be able to write what she thinks, without having someone anticipate - it just blows my mind.  This is HOPE!

So after this amazingly incredible day (best day ever!) I only managed to snag a few pics with Juliana and Susan.  

After school I couldn't wait to get my hands on Juliana.  I hugged her and screamed with tears in my eyes "Juliana!!!! You are a WRITER!!!!" and you would not believe the huge ear-to-ear smile she gave me!  I have NEVER seen her so proud of herself.  This visit has changed the trajectory of Juliana's education and therefore her chance at a quality life in the future.  The opportunities and quality of life that literacy will offer her. . . . .  everyone have that right.

And on a final note, if you would like more information on Susan or the methods she uses with our amazing Rett Girls you can take her courses at Rett University.  Check her out at www.rett-u.org

Inside Recess

So today I got to substitute for Juliana's class.  I love getting to see Juliana in her environment at school and how the other kids interact with her.  It was really cool to see them during Daily 5 station rotations how all the girls fought over who's turn it was to read with Juliana.   Awesome to see her rocking out her word work with her aide.  But the thing I found probably most interesting was during inside recess.  So the kids go to recess directly following lunch.  Most days Juliana misses recess because I'd prefer she get enough time to eat.  Kids typically get 30 minutes for lunch, which by the time they sit down and then add in clean up time they really only get 20 minutes which is definitely not enough time for Juliana.  So I brought the kids back to class for inside recess while Juliana and her aide finished lunch.  Some kids played legos, some played computer games and some played school.  The kids that were playing school started announcing who would be the teacher, who would be the principal and then the shocker.  They were fighting over who would be Juliana and who would be Ms. Bustos (her aide).  Initially I was going to jump to "Defensive Momma Mode" and immediately go over and tell them to stop and how disrespectful that would be.  But luckily I forced myself to wait and see how this was going to play out.  And guess what, it was pretty cool.  The child that "played" Juliana did so in a very respectful way.  They did not portray her in any negative manner.  They spoke to "Juliana" in the same way they did to all the other "students" expect "Ms. Bustos physically helped "Juliana" with each activity.  They managed to represent her completely accurately.  Completely competent, completely aware and just in need of physical assistance.  It was actually quite beautiful.  I was so proud of these kids, their compassion and their understanding of my beautiful daughter.  So glad I let the kids play.

Mr. Troy

That is Mr. Troy Aikman to you!  That's right.  THE-MR. TROY AIKMAN was dining just tables away from us at Chuy's in Dallas!  Hard to believe, I know.  Couple that with my fearless 6 year old Olivia and this is what you get:

 So we explained who this legend was.  And she watches football occasionally.  And we kept asking her "Are you sure you know who we are talking about?"  I just kept visioning her going up to a nobody stranger and getting embarrassed.  So as to make no confusion, she drew the following picture of him to make sure we were all on the same page.

So she marched right up to the man and said "Excuse me Mr. Troy but I am a really big fan of you!  I wanted to give you some cards of my sister. (yes purple cards!)  Then after a few seconds of awkward silence we asked for the picture.

Roger on the other hand is not that brave, and decided to just let him photo-bomb.

So thank you Mr. Troy for being so kind to one of your youngest fans.  She later decided he was kind of cute!