World Down Syndrome Day 2011

3-21-2011 
For 3 copies of the 21st chromosome, unique to Down syndrome. In my opinion, creating some of the cutest of the cute out there. Don’t miss the video below.

World Down Syndrome Day.

Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.  If Braska is the only person with DS that you know, be sure to brag on her a bit today. I don’t mind at all!  Feel free to link to the recent post about how far she has come since her heart surgery 4 years ago.

Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.

Just tell someone. 

The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her.  Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.

Stringing letters [Down syndrome, fine motor skills, OT]

My teachers at school are just the best. I like all of them so much. And it’s so much fun to see what new things we’re going to do everyday.

Miss J had a fun new thing for me to try a few weeks ago.  They are LETTERS! My favorite thing in the world!  Miss J helps me learn how to use my hands better and make them stronger, which is really hard for me.  But these fun new letters are so great I don’t even mind doing them for practice.

Then the coolest thing happened…. I got home and there were MORE letter beads, just like my ones at school!  It was like magic! Somebody special loves me a whole lot, I think!


KiKi plays with them too, but they are my special toy to practice with.  The first day we had them at home, Mommy let me play with them some after KiKi went to nap.    Here’s a little movie for you to see…  check out my skills!

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Mommy note:   Neat things to note in this clip…
~~Fine motor is a VERY difficult thing for Braska.  She has only been in regular fine motor focused therapy for about a year, because prior to that most of her OT time was focused on feeding.  It is one of the areas that she shows the most delay. But we’re not bothered by that.  She’s doing great! She now has two OTs at school (the best two, in my opinion!), one for feeding and one for fine motor. (They are a GREAT team and overlap a lot in each area.)
~~ Suddenly every letter was her “fav’rit”. As in, “Oh, the letter U, my fav’rit!”
~~Most of the letters you will hear her say “makes the ___ sound.”  This is something we’re working on, mostly because Kinlee is obsessed with what everything starts with and what sound all the letters make.
~~You’ll notice phrases “I better go get it” and “I do it again” and others.

Merry Christmas from the silly sisters!

A good day to be 4

I had a great day. It was really busy and there’s lots of pictures to show you, but I’m gonna go to bed and get some rest!

Happy birthday to me!

Dress up party

Today we went to PaPaw’s church for a dress up party.  There were lots of people there all dressed up in funny clothes.  Me and KiKi wore our bug dresses, and everyone thought we were super cute!

KiKi doesn’t like people who are dressed up a whole bunch, like where you can’t see their faces or when it looks like somebody on TV or something. So she stayed close with Mommy most of the time.


I walked around by myself for a while because I’m not scared of the dressed up people.


There was a great big bouncy house for the kids, and I wanted to get in.  I don’t really jump much but I like to sit and let the other kids bounce me.


And I said Hi to Daddy through the strings.


And I slid down the big tall slide REALLY fast and fell over at the end.


I wanted to go do more, but there was a bunch of big kids in there and I was too small to play with them.  They were bouncing a lot bigger than I could do.

So I went and found a little seat to rest in.  It was close by Miss Cheryl and PaPaw’s cars, so I just rested with the beads a nice lady gave to me.


But KiKi had to come over too.  She likes to do whatever I do.


She wanted to go in the bouncy house, but she wouldn’t have liked everyone yelling and running over her.  So she just watched outside.


Soon it was time to go back to our church, and we were tired of the sun in our eyes.


KiKi even took her hat off.  And if you don’t do the dress up, you can’t stay at the dress up party.  So we said bye bye to everyone and we left.

Tomorrow night we get to do ANOTHER dress up party!  I can’t wait!

31 for 21: 2 meals 1 day. Very good.

Braska took two of her meals today orally. 

What’s up? You’re just sitting there looking at the screen like nothing’s happening here.  Let’s try this again…

Ahem.

Braska took two of her meals today orally!  Do you get that??

She consumed, by spoon and via her mouth, enough food to count for a meal. Twice. In one day.

This is HUGE!

Has she done it before? Yes.
Can she do it regularly? Probably. If Mommy will get in gear and do it right.
Is this a normal occurrence? Nope. Not at all.

Braska CAN eat enough calories to be “a meal” if given the right combination of circumstances.  The elements are not often aligned to make that happen. Liquids are another story, but she did take almost an ounce over about 25 minutes of feeding time and 12 to 15 sips.

The news is big. But it’s really largely because Mommy set aside made the time to do it.  That’s big.

I rely on the tube because it’s no hassle, no mess, super fast, and it gets the job done.  Those are all things I like in just about every part of life.  But I know that we have to make room in the schedule to help her get used to taking in real (though pureed) food and drink.  A meal in this scenario takes about 40 to 50 minutes total.  That’s a lot of time to set aside and be available to sit and wait. Assist here and there.  Feed manually for a while.  Allow breaks to happen. And go again when she gives the cue. 

I have to reign in my disciplinarian self when she pushes the food away. I have to give her time after she refuses to take a drink for the 8th time.  I have to try NOT to speak too firmly to her when she swings at the spoon as it comes. I’m learning from the pros that this isn’t the time for confrontation.  I need to make it a good experience.  So much thought. Just to eat. (And we’re not even CHEWING yet!)

All that to consume about 6 ounces of pureed food. Tonight it was pork roast with veggies. She really likes that one.  Followed with a chaser of yogurt, always a hit.

I need to get this. I need to make this a priority. I need to slow down, even more than the “slow down” I’ve done in the past few weeks schedule-wise, and really give her the opportunity to do it.

But goodness… If you ever need to be shown just how impatient you are, and I am in no way delusional about my impatience, just try to feed a severely averse child who could NOT care less about food.

We’ll get there.  But I may not make it with my sanity intact.  Lord willing, I can hang on!

31 for 21: Beautiful Baby Braska Part 2 [Down syndrome]

Here’s a few more of the finds from years ago…

Spring 2008.  Pretty little bear…

 
These were taken the same time… I posted the one below here with some thoughts that really are cool to look back on. Now the little girl I thought would be so neat is here, and she IS pretty great.

And the famous announcement shirt… the way her daddy found out about little sister… this was June 2008. She was 18 months old. Just scrumptious!

31 for 21: Beautiful Baby Braska Part 1 [Down syndrome]

Yesterday I was looking for some pictures on my mother-in-law’s computer, and as I was perusing her uniquely organized files, I came across some great ones. These are all pics that probably were posted long ago on Braska’s blog, but they’re definitely all worth bringing to the front again.  I smiled at each and marveled at what a pretty little one she was.  That she IS, of course. But her little round baby face was just too cute…

So enjoy this little walk down memory lane.

From the summer 2007, one of my all time faves. Hanging by the pool with Grandma C.


Also from summer 2007, with Uncle Levi. Notice the marks on the side of her face.  That was one of our worst experiences with NG tape… she still has a scar from that one.  (I wish we’d have ditched that NG a long time before we did!)


From Christmas Day 2007. Just so cuddly, isn’t she?  This was the DAY AFTER she got her glasses, and she was LOVING life.  She came alive in a whole new way. (Don’t miss the yummy little curvy pinky finger, one of my favorite little traits of hers.)


Just after Christmas 2007, with Uncle Ethon. Those blue eyes of hers are no longer as blue, since they’ve changed a bit over the years. But I love that little face… 


More to come in a couple days… 

31 for 21: Well DUH mom!

Last night we were cleaning up the living room, and the panda pillow pet-type thing that lives in the corner was returning to his home.  Braska came over to me as I was reattaching his little strap to make the panda appear versus just the pillow. 

She said, “Panda bear.” 
I said, “That’s right.”

Then I waited a second and remembered something we’re supposed to be working on.

I asked, “Braska, is this a panda bear?”
She said, “Yes.”
I asked, “Is this a horse?”
She replied, “No.”
I asked again, “Is this a panda?”
And she said, “Yes. Panda bear.”

Simple as it may seem, this is a big deal.  We’ve been working hard on yes/no preferences for a long time.

You see, usually, if you ask Braska what she wants, she’ll answer with whatever was the last option in the list.  And if you ask a yes/no question, it will always be “Yes” or “Yeah.”   You can ask her if she wants pizza for dinner, and she’ll say, “Yeah!”  But try to offer her pizza and you’re out of luck.  She’ll push it away and say, “Nothankyou!” 

So her marvelous SLP has Miss L has been working on this with her, and I’ve been trying to encourage more opportunities like this, and here we see results! Woo!

For anyone who is working on this particularly, here’s the instructions I was given.  (Note: Braska’s big motivators are letters and numbers.)

I’m to show Braska a letter and ask her what it is.  She will tell me correctly.  Then I ask, “Braska, is this a dog?” (The key being to choose something that is as far wrong as possible….not just another letter, but something far out.)  She should answer, “No,” of course.  But usually, she will continually answer “Yes,” until we tell her to try again and repeat the question along with a cue sign for the correct answer.

The fact that she’s getting this is so neat.  She’s really starting to take all this crazy good, well-articulated, speech of hers and combine it into useful language.  And that’s fun.

Monday, when we picked her up from my parents’ place, I realized I hadn’t called the school first thing to tell them she wouldn’t be there.  So I said, “I forgot to tell your school that you weren’t going to be there today.” And I went to get the phone. She came with me and said, “Call Miss A___.”  Yep, that’s what we did.  She connected that telling the school anything would mean that we should call Miss A.  Nice.  Good stuff.

31 for 21: A special girl

Last night I took Braska with me to WalMart. She loves to go shopping, and she’s always happy to sit in the cart and say hi to people or point out various items or letters that she sees.  She’s a fun little shopping companion, and I realized while we were walking in that I don’t get to take her much anymore because I usually go when she’s at school in the mornings.

At one point, a lady from behind who had 4 little kids with her said, “Oh, she is SO cute!”  I wasn’t sure she was aiming her compliment at Braska, but then she cam around us a few seconds later and said, “She’s adorable! How do you keep her glasses on??”  [This is probably the most common question of ANY kind that we get when we’re in public.  Followed closely by “How can they tell what prescription she needs with her glasses??”]  I gave the general rundown of the fact that she’s had them since she was 13 months and just accepted them from day one because she could finally SEE things.

As that mom moved on, an employee there came over to talk to Braska.  Of course, she looked the lady over and didn’t talk for a bit.  People always ask a question and then repeat it about 4 times before she will answer… and she’s still processing the first time.  But I don’t get into “Hey, if you’ll ask the question once and pause for about 2 seconds, she will answer you.”  I usually try to get her attention and make eye contact and ask the question… what’s your name, do you have a sister, are you shopping?  Braska did finally tell her what her name was.  Then she pointed to my shirt, because I was wearing one of my NEBRASKA t-shirts.  And she knows that’s her name, so she was providing a visual aid for the lady.  I thought that was funny.

We finished picking up our few items and headed for the checkout.  As we were steering toward the line, a lady passed and said, fairly loudly, “It’s a special child!  You have a special little girl.”  Like I won something.  It was in that kind of celebratory tone.  She came up beside me and said that she just LOVES the “special ones” because they are SO sweet.  Braska smiled at her, with a hint of hesitancy because it was kind of in-your-face-niceness happening.  I agreed with her that I did have a special girl and she was, in fact, pretty sweet.

She went on and we checked out and headed for the door.  Just as we were passing through the did-you-steal-anything detectors, an older gentleman with an unidentifiable specialness of his own leaned over to me and waved at Braska. Then he said to me, “Hey, did she pick up the bill for ya today?” and he laughed.    I told him I always let her pay when she comes along.  He thought that was great and laughed again as he walked away.

These people were sweet to interact with us, they were honest in their interest or compliment.  They held no disrespect for Braska’s disabilities, though they noticed she was different.  They were not all genteel in their approach or up to date on the current appropriate way to say things.  But they saw a little girl who drew them to make a little connection, and that’s great.  I welcome that, and I won’t interrupt it to point out that their admiration needs to be said in a politically correct way.  To me, that’s completely ridiculous.

I am not a champion of all the right terminology.  This is not news for most of you.  I appreciate that these people wanted to engage us.  They could have said any number of “worse” things, “wrong” words, or words in the “wrong” order, and it still wouldn’t have bothered me.  I want nothing more than for Braska to get to be appreciated for being a little girl.  I’m not too concerned with how it’s said when the spirit is purely joyful and full of admiration.

Braska: More pictures from my friend visits

Remember back when I had a party weekend with lots of friends and lots of parties? 

Well I have some more pictures to show you from then.

Me and Jack stood in the picture place (by the door) for our pictures.  We have matching clothes and he’s cute. But I think I win, don’t you? 


Madelyn helped me decide what we would get at the dinner place.  She’s Jack’s big sister, and she is fun to play with.



On Sunday, we went to church with friends too.  Or they went with us really.  Jack and Nichole even got to go to my class with me!  It was great!


One night, Ellie, Nichole, and Nina came over to my house.  And Jack came too.  We watched Signing Time all together while mommies and daddies talked about stuff.  Nichole is REALLY good at her signs! 

Braska: It’s time for my month again!

I suppose maybe it’s not my month, but it’s the month when we get to talk a whole lot about some of what makes me “extra special” as Mommy says.

It’s Down syndrome awareness month!  Are you aware?

My friend Georgia’s mommy does this really neat thing for our month (It’s Georgia’s month, too, ya know.)  You can read about it if you click on the cool little button right down there.  Like under this.  See it? 

Grab This Button

Mommy helped Miss Tricia get the button ready, and everyone has it on their blogs so other people can know about our month!  Isn’t that great?

So I’m gonna put things up every day, as much as I can, and most of it will be pictures with little stories.  Because even though I am “extra special,”  I do regular stuff every day that somebody might want to see.

It’s gonna be a great month!

Mommy report: Skill surprises

I’m a horrible blogger lately.  No excuses except life. 

BUT--

There’s a couple things I just don’t want to forget that have happened lately relating to Braska’s development.

• We’re just beginning work on potty training.  I won’t go into great detail because that’s not really me in an area like this.  Suffice it to say that both girls are loving the process, and even though they’ve been totally fine to go for quite some time now, especially Braska, they’re picking up pretty quickly on the routine.  We’re not in “full training mode” or anything, but the preliminary work is going well.
• When I drop Braska off at school in the morning, she is to take her backpack to her cubby and then we go wash her hands and find her nametag.  The other morning she took her backpack (which is actually too big for her to wear…causes balance issues even though it’s a mini-backpack) and carried it right to her cubby.  Leaned over and patted her name on the bottom of it and said, “Braska’s cubby.”  Nice!  We know that she can recognize her name, but it’s been reinforced a couple times lately and with others besides just me, which is fun.
• She also can do her washing-hands and nametag-finding procedures by herself, too.  I generally help her enough that I don’t realize what all she can do herself.  I stepped back one day, not intentionally, but she didn’t wait for me and continued her morning routine just fine!  She stepped up to the big sink (on her stool), turned on the water, reached for the soap (automatic motion sensor kind…waited appropriately), didn’t quite get it scrubbed all around before it got washed off, but oh well.  She rinsed and turned the water off.  Then she stepped down (with assistance, steps are still very hard) and walked to the paper towel dispenser, pulled the rope 3 times like they’re supposed to (counting loudly “one! two! three!”), tore off the towel, dried her hands and walked to the trash and said, “Throw away!”  She marched her tiny self over to the table and found the correct nametag and said, “Braska’s nametag” and handed it to me to put on her back.  I told Julie that morning that I clearly have been holding her back by helping so much each morning.  She doesn’t need so much!  Amazing!
• Her teacher also told me that she can identify her two friends’ names from her own and will say each of them correctly when shown the names.  (On her “small class” days, two days a week, the class is just two little boys and Braska.)  The teacher held up one name and Braska proclaimed clearly, “Dominic!”  Then they showed the next, and she said, “Braska!”  And then the third one she studied for just a sec and said, “Colter!”  Apparently this has happened more than once and in various name order. I had no idea… 
• We’re preparing for her IEP meeting at the end of October.  Not too much to prep for this time, though. Our team is good, she’s met many goals, and I think we’re in good shape for this next year.
• She’s now good with her letters—upper AND lower case--thanks to Preschool Prep.  She can do her numbers 1-10 on sight and in order.  She can count to 20 consistently.  And she’s got at least 8 shapes down as well.  She’s doing well matching items of the same color, but she still struggles with naming colors appropriately.  She always says *a* color, but it’s not always the *right* color.
• And NO SICKNESS YET!!!  (For Braska, that is. Kinlee’s had it, but Braska’s not caught anything! Woo Hoo!)
• Her feeding is picking up a little, though it’s very slow. She’s just starting to agree to chew on something once or twice, and only if it’s in a pouch (so that pieces aren’t coming out into her mouth, which bothers her greatly).  But with a Ritz cracker, she will bite a piece, sweep the large pieces out of her mouth with her tongue, but she is handling the little pieces and crumbs pretty well. This is a HUGE improvement.
• Still no drinking of any real quantity. No straw success yet.  But she can raise an open cup to her mouth and sometimes get a little.  We only put a tiny bit in or she ends up soaked!  But she’s becoming more cooperative with the work process.  Our feeding therapist/OT is GRRRRRRREAT!

That’s all for now… I’m exhausted from a night of both girls being up numerous times last night.  Not sure what was up, but they really ganged up on me last night.  Hoping for better sleep tonight!!

Me ‘n Jack: New teachers, new room, new friends [Down syndrome, preschool]

Today was the first day of school!  I didn’t get to stay the whole time since I’m not all the way better from surgee yet, but I had a lot of fun while I was there!

 

Me and Jack decided to wear our shirts that he got for us on his trip a few weeks ago.  He came to my house before school so we could take some pictures.

 

“Good morning.”


Braska: “We’re not going in the house. Pictures are outside today. You ready?”


Braska: “Come over here, and we’ll let KiKi in the picture with us.”

Jack: “What if I want to just stand here?”


Girls: “Is he going to sit down?” “I don’t know.” “Does my hair look ok?”


Braska: “What if we kind of sit like this?  It’s what the cool kids do.”


Jack: “Ok, I’m here. What now?”

Girls: “Just wait for Mommy to take the pictures. Do your hands like this.”


Jack: “You want cheese? I’ll give you cheese!”

Braska: “Don’t look now but he is being goofy again. No! Don’t look!”

KiKi: “He’s still pretty cute, though.”


Then we took some more pictures in the hall by our classrooms.  We’re not in the same class this year.  I don’t really like that, but at least he’s right next door.  It was really weird to go to meet new friends without Jack.

”Are we done yet?  It’s almost time for school!”


”Please, God, help me make some fun friends in there.”


”Here’s the plan… if you miss me, just knock on the wall three times and we’ll meet in the hallway.”


”I like my cubby, but seriously… why can’t Jack be in my class with me? Where is he?”


Me and Jack both had good days at school.  Tomorrow I get to stay the whole time because there’s only 3 kids on my small class days.  Then next week I get to go regular all the time!  I like my new teachers and I think my new friends are really nice too.

 

While Kinlee was waiting for me to get done at school, she played on the pirate ship.

 

She went around and around and around and kept going down the slide.


Then she found some great big balls. Almost big as her!


Here’s some little movie of Kinlee playing.  (Grandmas like these kinds of movies.)

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YAY for school!!!

Time to go home [Down syndrome, tonsillectomy, adenoid, surgery]

A little while ago, they said I could go home.  But I had to wait for things to get all done.  So I rested on the couch a little.


Then I waited some more.  I’m tired, you know.   Very tired.


Then my super great nurse, Miss Amy, came to get me all unhooked from my cords and stuff.  She took my cover off my arm and there was all this weird tube and tape on my arm.  Maybe THAT’S why my arm hasn’t felt very good!


She started to take it off, and she did it slow and nice, but it still wasn’t much fun.


Then I had to wait just a second for her to get the rest of it.  Almost done.


Now she’s working on the hurty part.  I really really really don’t like that hurty part.


I tried not to cry as long as I could, but it just hurt too much.  But I only cried a little bit.

(This super sad face is ‘specially for Daddy and Grandma C.  You’re both a little tiny bit mean, you know it.) 

When we came home, we stopped and had lunch with Daddy since he works close to the hospital. Then we came back to our house, and I went right to sleep on the way.