Braska Bear

Mommy reporting: Today we had an appointment with a PT who specializes in pelvic floor issues.  Typically that’s for older women who have bladder issues. But I took my almost-7-year-old to see her. Maybe I should back up a bit…  I’ll try to summarize as simply as possible. Braska is very verbal. We thought that since she could tell us “I need to go potty,” when she was 2 we would be knocking this potty training thing out with no problem. And it has not gone that way. At all. Braska will be 7 next month and, though she has success on the toilet sometimes, is no where near consistent.  We’ve tried scheduling, and every possible “sure-fire method” including those deemed as especially for kids with DS. I’ve been convinced for a while that something wasn’t clicking, either with the right sensory messages getting to her brain or something medical.  But then she’d do ok for a day or so, and I’d think we were past it. But as we approach her birthday and still s...

Writing is VERY hard for me.  I have to have a lot of help to learn how to do it.  But I’ve been getting better and Miss Jenny is pretty proud of me.  She’s the one who has been teaching me about how to use my hands for a couple years.  This week I wrote lots of letters for Miss Jenny.  AND I cut a paper right on the line with big kid scissors, the kind that don’t help me open them.  I’m learning lots these days!!

Sometimes I like to pretend to be a dinosaur.  I’m a T-Rex, with little short arms.  See? ________________________________________ Mommy report: Speech/language Braska doesn’t really want her speech therapist to know she can talk.  And that’s unfortunate.  She’ll show just enough to get by, but nothing like what she’ll do with other therapists or in more comfortable environments.  The SLP is very very sweet, so it’s not like she is difficult for Braska to deal with.  I’m not sure what B’s reasoning is.  But she just will not do much spontaneous talk around Miss C.  It boggles my mind, because Braska is a chatterbox, no doubt. She talks almost constantly at home. But after talking with Miss C the other day, I decided to jot down the things Braska said for just a little snippet… then I emailed her the “findings.” *When climbing up in her chair, "all safe and sound!" *She picked up my phone sitting there in front of her and sa...

Here’s a little piece from a note Mommy got from Miss L today… she helps me learn how to climb and run and get stronger. I came by the classroom to get her and I was helping her get ready.  She stood there and started squatting in place.  I asked her what she was doing and she tells me, "I plie`-ing" …  It was hilarious!!! I’m learning so much in dance class that I have to share it at school! You should try it! Just put your feet together and bend your knees… Plie` everybody! (If you missed some of my stories about dance class, you can go here .)

October is Down Syndrome Awareness Month. So we’ll highlight a few little special things about what DS means in our house. [I have Down syndrome. I have to brush my teeth before bed. I like when my Daddy helps me. For a long long time, I did NOT like brushing my teeth.  Did NOT NOT NOT like it, I mean.  I would yell and cry and fight and kick and bite my teeth together really hard so Mommy and Daddy couldn’t get the brush in there. Then last year we tried some new things with Miss Sue. She is really smart about all the things I don’t like with my mouth.  And I practiced just a little tiny bit at a time, and I practiced over and over.  And now, Mommy and Daddy are so proud of how good I let them brush, and sometimes I even help! Here’s a little movie of the other night when I was telling Daddy to do it slow and fast.

Sometimes special people give me special things… I love letters.  All kinds of letters. Words, too.  But I don’t like doing things with my hands that are hard.  So when I got this nice present of big letter blocks that have a string that you put thru them, I decided to try it, even though I don’t  usually like to do those kinds of things. And it’s even better when I have my iPod and my special therapy music in my ears.  Both of those were from special people, too.

Kids eat. Kids drink. That’s what kids do. It’s built in. They just know how. But mine doesn’t. Well, one of them does, but the other one, the older one, the way-tiny-for-her-age one doesn’t. (We will find out tomorrow if we’ve made our summer goal of 25 lbs! It’s going to be close…) She’s been in feeding therapy for over 4 years. She’s made progress. Lots of it. But it’s VERY slow going. But this isn’t about that. (If you want more details about our feeding journey, please feel free to ask. I’m happy to address particular questions.) We’ve been working on Braska’s oral liquid intake more diligently since the spring. The team initiated offering frequent drinks during her school day, between each activity, trying to increase her oral intake. She is up to about 3.5 to 4 oz a day (9am - Noon each morning). That’s a very VERY big improvement from a year ago! She only takes sips, like a mouthful at a time, (from a sippy cup with no valve) then she has to let go of the cup and...

Sometimes I have to work extra hard to learn things and make my arms and legs do things that I want to do. I have lots of teachers at school who help me learn new things. Miss L helps me work on walking and running and climbing. And it’s hard! But I’m really having fun with all the stuff I’ve learned this year from her. I didn’t used to be able to do this, and Mommy was so surprised that I did it this week at the playground! So this is for Miss L…and for all my teachers who have helped me get stronger and learn more and more. Make photo slide shows at www.OneTrueMedia.com Can you tell Mommy was kinda scared at how high I was going all by myself?? (I had to tell her, “Mommy, it’s ok!” Did you hear me?) But I did it!!!! (Mommy note: There are SO many unbelievable things in this one little snippet of Braska’s life. This one peek speaks to so much progress. That she will even attempt a climbing structure still surprises me. That she can maneuver her feet on those little cyl...

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! Make an on-line slideshow at www.OneTrueMedia.com Mommy note:   Neat things to no...

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...

Mommy has some more stuff about my eating lessons on her blog. You can click here if you wanna read about what's happening. I don't really want to talk about it right now because I think they're going to make me do some hard things that I don't like. But Mommy said I'll be happy in the end when I get to eat yummy things. I just don't know about that... but I do like my new eating teacher alot. She's really nice. Maybe it won't be so bad. I don't have to go to school next week, because it's spring or something. Then when it's time to go back, I'll start seeing Miss Sue more and she'll help me.

You may have seen over here that we were recently scheduled to do a demo for a feeding therapy seminar that was held nearby.  Well that was today, and it was quite an experience.  A good experience, and yet one that leads to frustration…  let me explain. Lori Overland, MS, CCC-SLP was the speaker, and the seminar was promoted by Leaps and Bounds , which is a therapy facility here.  We were to fill in where there was a need for a child with problems moving food around and maintaining liquids in the mouth.  What a good fit!  I was anxious that Braska might not cooperate in a group setting, but we went ahead and said we’d do it.  We arrived a few minutes early, Braska got to meet Lori and play with her a bit while Lori did some visual eval and observed for a few specific things.  She tried a couple skills with her and shared some initial thoughts.  Immediately, she noted problems with Braska’s oral motor skill and strength.  This migh...

I’ve got so many cute things to wear for Christmas, so we’ve been trying to take pictures to make sure we remember them all.  (Some of these are ‘specially for Miss Karol, but we’ll let all of you see, too.) Mommy keeps trying to take pictures of me and KiKi together, but we don’t ever look at the camera at the same time.  That makes Mommy growl sometimes. But look how cute we are! This is a cute sweater that somebody gave me, and there’s little Christmas things on my shirt underneath the sweater too.  [Oh, and the blue things on my legs are my ther-uh-togs ( Theratogs ).  Miss J at school helps me learn to walk and get stronger, and she’s letting me use these.  They help me ALOT!  I’m walking better with my walking toy all the time, and sometimes I try to do a step or two myself.  It’s hard work though!!] This was a present from Miss Karol… isn’t it so cute!  That’s what I always say when Mommy gets my clothes out…”Cute!”...

One day every week I get to go see Miss A, or she comes to see me, and we do some fun stuff. We call these PT days.  If she comes to my house, we go up and down the stairs, but she doesn’t carry me. She lets me climb up by myself, and then I go down, too, but I still have to have a little help sometimes.  I’m getting better though! Last week, we went to school to see Miss A.  First I had to get some comfy clothes on.  We work hard, you know, so I have to be able to move alot. Then KiKi wanted to get in on the pictures.  She thinks she has to do everything I do! I sat down to wait for a few minutes before it was time to go.  But KiKi wanted up in the chair too!  This week Miss A had some little thing that she put on me called Ther-a-togs. They are supposed to help me stand up better or something. We always do the letters on the wall.  It’s one of my favorite things. I can say most all of the letters when she gives them to ...

Again, to review, Braska is 34 months old, she rolled over at 8 months, she sat independently at 13 months, and she crawled consistently at about 25 months. Over the last year she’s slowly conquered pulling to a stand, cruising, and taking steps with two hands help. Braska has PT every week.  She loves her Miss “An-juh-wa” very much, and she performs better for her than almost any of her other therapists.  She has really taken off over the past few months since we’ve been having some sessions in the motor therapy room at Braska’s school.  She LOVES that room and is totally energized when she’s in there. They swing (a favorite always) and climb and do little obstacle courses while crawling.  She especially loves the space maze, which she has finally been able to master—all three levels—all by herself.  I often say that if we ever were to win millions, one of the first things I’d do would be to build one of those rooms on our house and fill it with all that coo...

I had the most bestest fun today!  I love to play on Mommy and Daddy's great big bed, but I'm not allowed to be up there without someone to watch me because Mommy says I don't watch the edges like I should.  But that's ok because it's way more fun when Daddy plays with me! Miss A lets me climb all over the big cloud pillow thing at school, and to practice at home, we put lots of big pillows all over the bed and I climb on them.  It is SO much fun!! (Mommy note: The "headboard" to our bed is a mattress, turned on it's side.  It's a longer story than you want to read, but it actually works really nicely, and it fits perfectly with our king-sized bed.  You'll see why this info is helpful... back to Braska.) So today we were playing on the bed after we got up from nap, and I wanted to get up on the higher part of the bed.  And I found a NEW fun thing to do... Here, I'll show you in a little movie. Make video montages at www.One...

Sometimes I get to go to my school to do PT with Miss A. I really love those days! It's so much fun to play in the big room there. There's lots of climbing things, and I just love to climb. But I always start by banging on this part and getting all ready to go. Then I like to swing. Sometimes the swing is like my swing at home, sometimes it's a big hard board that I sit or crawl on, but this time it was different. I didn't know what to do at first, but then it was kind of fun. Miss A put me on the thing called a scooter. She and Mommy didn't think I'd be able to do it since my arms are not strong at all. But I did it! I had to work REALLY hard, but I did it. Here's a super short movie of me showing off on the scooter.

I got to go to my school a couple weeks ago an extra day to meet Miss A, my PT, and it was SO fun!! Usually she comes to my house, but it was special to get to go play with all the neat stuff at school. I got to use the same walker toy that I practice with when I go to school on Mondays. I surprised Mommy and Miss A because they didn't know I could walk this good with the walker toy! We went to the place they call the "motor room" to do some exercises. I loved the swing! There was a really fun place to crawl and climb, and I just LOVE to climb, so I did this part lots of times. Miss A and Mommy were really excited about how hard I worked and how much fun I had. I hope we get to go back alot!!!

Last week, Daddy and Mommy cleaned out their cars one day when it was really warm outside. While they worked, I played with my color balls. I just LOVE them! Great gift, Papaw!! Yesterday, my PT came to see me. I worked really hard at making my legs stronger. She made me bend over from standing up and pick things up on the floor. It was so hard! And then I climbed all the way up the stairs from Daddy's room downstairs!! Everyone was really excited! Since I did so good, I got to play bubbles. They are my favorite! (Mommy note: Anyone want to guess what my favorite part of this pic is? Think fine motor... Isn't it funny that our Mommy brains work this way!!)

Since I'm finally feeling better from my coughing and icky nose, I've been busy with playing and practicing my exercises again. I've been going all over the house leaving messes for Mommy to find, so now she's closing all the doors except for my room so I can go in there and play with my toys. It's fun to play in my room! I have different toys in there than in the play corner in the living room, so I'm finding new things to do. Miss C came over on Tuesday to help me with my eating. She keeps track of my calories and makes sure I'm getting enough good stuff to keep me growing. She brought me a cookie and I smashed it up. But then guess what? I grabbed the little bits and put it in my mouth. Mommy and Miss C were surprised! I only did it once, though. That's just the way I do things, you know! When Daddy came home for lunch, we played and I showed him how good I can hang on. Check out how high I am! I was sitting and he just kept going with his hands so ...