The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Saturday, October 30, 2010

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!

Thursday, October 28, 2010

31 for 21: Education without alienation [Down syndrome, person first language]

I have had the privilege of getting to know some super nifty blogger buddies “in real life” (IRL if you’re a fan of the acronyms, which I am) versus just communicating through blogs and comments shared.  I could list a whole bunch of them, but for today’s purposes, I’ll highlight one of my faves.

Most of you are very familiar with Courtney, Justin, LC, and Jace and their ever-entertaining stories written in the dry, witty style that Courtney employs with ease. (And for what it’s worth, it’s not a show for the blog. That’s how she talks. It’s great.)

I’ve been blessed to be able to get to know them better since they come over here to St. Louis Children’s for a chunk of specialists for the squibs.  We’ve done dinners out, visits at our house, and I’ve been able to provide some tiny distraction from the fun of hospital stays when they’ve been here for a few days at a time.  Trust me, I am always the one who walks away more excited and blessed by the interaction. 

I’m still a tad starstruck, I admit it.  These two and their tots are really just a tad more snappy than most people, and the niceness is icing on the cake.

Anyway, this isn’t supposed to be all about my gushing affection for “ch” and her gang.  It’s about a conversation that we had last time I visited in the hospital, last month.  Most of the conversation was of a personal nature, and as usual, Courtney offered superb perspective and some good food for thought.  But the other part of the conversation was about a topic we all discuss occasionally, it seems.

When do we correct people for referring to  our “Down’s babies” or “Down syndrome kids”?  Or do we? 

There’s lots of talk about person-first language, and I’m good with that.  (I blogged a bit about it here.)I’m not opposed to speaking in a respectful manner, of course, but sometimes pushing the point can alienate those who are just trying to interact with us or our kids.  And alienating them does NOT provide opportunities for education about why you might feel it’s important to phrase things a certain way.

Courtney has done a great blog post that encompasses much of what we discussed that evening at the hospital.  She had great things to say then, and she’s sharing them here.  (Because I know a few of you read with your school-age kids, there is one PG-13 word used in a reference example. But don’t skip the article for that. It’s very worth the easy mini-edit.)

My favorite section is this…

And, in stopping you and correcting you I've established that you have to tiptoe in your references to my children.  I've implied that speaking of my children requires delicacy and careful treading.  I've implied that my children are different than most children you could easily and naturally speak about.

The bottom line is this for me…I’m not going to demand that strangers get educated and know the current PC way to say things JUST to interact with me or my children.  I am happy to be part of that education, but it takes a warm response and welcoming attitude to allow that to happen.   And as for caregivers and medical people, yes, they should know what’s considered “acceptable” but I’m still not going to pull an attitude that MY kid has to be treated with special (ahem) care in how you just talk about them in regular conversation.  If the opportunity to educate in a nice manner presents itself, then sure, I share the info with them.  But I am not going to walk around with what amounts to a chip on my shoulder just waiting for someone to have the gall to speak to or about my child and use their words in the wrong order.

As Courtney says, it’s gray and sticky territory.  I will probably always be in the minority on this in the DS community. (OR is it “community of those who have or love someone with Down syndrome.” Seriously?)  That’s ok with me. I’m fine with being on the fringe.

I just really feel like we have to watch our interactions with people and make sure that the education is happening WITHOUT the alienation taking place first and voiding the educating possibilities.

The grouchy kid.
The sick kid.
The pretty girl.
The rowdy boy.
The silly girl.
The hyper child.
The smart kid.
The happy baby.
The colicky baby.
The picky eater.
The whiny kid.
The helpful child.
The birthday girl.
The football guys.
The ballet girls.

It’s a natural part of our language to have the descriptor in front of the noun.  It doesn’t mean that what we have used to describe them is the ONLY element of their being. It’s just what pertains at that moment. I don’t think it’s fair to expect people who do not have the perspective we do to *just know* that in our particular situation it’s “not ok” to use the order they are used to.

Yes, it’s ok to educate, just don’t alienate and further isolate our community in doing so.

Wednesday, October 27, 2010

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…


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!

Saturday, October 23, 2010

31 for 21: Speaking for awareness [Down syndrome, local support group, Kiwanis]

Thursday I had the privilege of speaking for the O’Fallon Kiwanis Club at their lunch meeting.  I was asked to speak to them about what our county’s community group (StC) of our metro DS association (DSAGSL) does, as well as sharing our family story. It was great timing with DS Awareness Month upon us, of course.

I was honored to be asked, even though the president of the club—who did the inviting—happens to be a certain female sibling of mine.  And it doesn’t hurt that I have a brother in the club as well.  This kind of nepotism can be a good thing.


So I prepared a speech, made up a collage (above) VERY quickly in the middle of the night before (because apparently I didn’t plan to do a handout until the last minute), and after beefing up my confidence with an amazing Bible study lesson Thursday morning, Braska and I headed to the restaurant.  '

Yes, I took my own personal visual aid.

I had also asked the interim executive director of the DSAGSL to come, to give some credence to the presentation and to class up the whole thing.  I’d not had the pleasure of meeting Amy prior to this, but I’d heard great things from several people.  And for her to take on this transition time that’s happening lately, that is not for the faint of heart.  She did not disappoint!  I’m definitely a fan.

The presentation went well, the Kiwanis asked good questions and were wonderfully gracious and friendly.  I was a little nervous at the beginning, but I felt comfortable as I got into my little speech.

Of course I went the route of writing my entire little speech out instead of just doing outline, so as not to let myself start rambling and get distracted from what I wanted to say. 

Overall, I was pleased, especially since it was the first such speaking situation in quite a few years for me.  But it was a great one to encourage me to get back into practice.  I enjoyed the whole meeting quite a bit.  And afterward, Amy and I were able to chat a while, which was really nice. 

Braska was a champ, napping for a bit on her auntie and then her uncle, but she charmed just as I knew she would.  She even shook hands with a few people, saying, “Nice to meet you.”  I knew that fun little nicety that we taught her would come in handy.

Here’s a few snippets from my part of the presentation…

  • There were a lot of difficult periods during those first few weeks. I had a hard time dealing with the combination of postpartum issues, emotional stress that comes with having a new baby in the hospital long term, and trying to learn this new way of life that goes with a diagnosis of Down syndrome and heart defects. There were some supports in place in the hospital as well as in the local Down Syndrome Network of Champaign, which is very active and an excellent resource to parents there. But this journey is one that each family has to figure out and adjust to in their own way.
  • But don’t think that I’m complaining. Let me tell you a little about my daughter... She has been the easiest child to raise thus far, though I admit just recently she’s decided to have a bit of an independent streak that’s been a little challenging.  But that’s actually good to see in her development. Braska is a very sweet, generally happy, little girl who loves her Mommy and Daddy, USUALLY her little sister, and even her dog. She has friends that she loves to play with and asks regularly to go to “Jack’s house” to see her best friend, Jackson. She has the best giggle, and can hug the stress out of me like no one else.
  • She can walk, talk, play, laugh, color, and say all her numbers as well as count to 20. She can identify all the letters in the alphabet, both in order and randomly by sight or by sign. She has been signing since she was about 9 months old and knows well over 100 signs for words. She knows her shapes, colors, and animals, as well.
  • Some of the activities that the StC group is hosting in the next few months include a trip to the pumpkin patch for the whole family this coming weekend, our 2nd annual Mom’s Night Out event at the Painted Pot next month, playgroup dates—both on weekdays and on weekends—for birth through preschool and for ages 5-12. We will be having a family event at Jump 4 Fun, as well as a seminar on how to set up a special needs trust and a workshop on school transitioning, from preschool to kindergarten or elementary to middle school. This is just a sample of what the StC group organizes during the school year.
  • Integrating into a community of new people while dealing with the changes to our life plan that can happen following a diagnosis of DS can be very overwhelming.
  • The StC group is truly a blessing. The needs that are met through the DSAGSL and specifically our local StC group are varied, but they are all important.
  • My passion at this point in my life is to help others through some of the more difficult times of this journey. If I can reassure someone that it’s not as scary as it seems to get this diagnosis, or if I can help a new mother connect with others who know exactly what she’s going through, it is very rewarding. These are some of the goals of our StC group and of the DSA.

Thanks to the Kiwanis for having us.  It was a pleasure to get to meet you all and to share our mission with you.

Friday, October 22, 2010

31 for 21: IEP 2010, Part 1 [Down syndrome, disability, IEP, special education]

Today was IEP day.  (Individualized Education Plan—All students involved in special education have one of these.)  We moved Braska’s up a little earlier than her birthday in late November because I like it a little closer to the beginning of the school year.  It just makes more sense to me to be done with the new team soon after school starts.  So this year we’re in late October, next year maybe we’ll hit late September.  That’s probably a good time… about 6 weeks into the school year.

Anyway, after a busy day yesterday, which I’ll have to tell you about another day, I tackled the important parts of IEP prep last night.

The baking.

Yes, that’s a very high priority on my list of IEP must-haves.  In my opinion, no parent should EVER go to an IEP meeting empty-handed.  Taking goodies, be it  pastries,  muffins, or coffee cake for a morning meeting or M&M’s, cookies, or popcorn for an afternoon meeting, it’s a huge tool in making the meeting less intimidating for all involved.  It seems to allow people to let down their guard and work more as a team, as it should be.

I remember last year, when we did our first IEP process at Braska’s 3-year-old transition time, I was shocked to find that we (both Julie and I) were the first to bring food to an IEP meeting at our school.  And this is a developmental preschool… with more than half of the students having IEPs!!  I couldn’t believe it!   In all the talk on forums and blogs and DS message boards, taking brownies or goodies to IEP meetings seemed like the norm.  Everyone always said, “Don’t forget the brownies!” when the were discussing someone’s first IEP experience. 

So when I entered last year, in our first of two meetings—we did the EDM (eligibility determination meeting) and IEP meetings separately per my request—with my coffee cake, pumpkin bread, orange juice and milk, they were stunned.  I cannot tell you how excited these ladies were. It was so funny to see them talking about how they needed to find a reason to have IEP meetings each month for Braska.  Julie got a similar response when she had her meetings, just a few weeks before mine.  For my second meeting, a couple weeks after the first, I took more baked yummies and also took little bow-tied bundles of cookies for each person to take and enjoy later.

For MONTHS, and that’s not exaggerating, we would see people in the hall one or two times a week who were NOT at our IEP meetings but would say, “I hear you guys do some great baking!”  or “Can I be on your IEP team next year?  You bring food!”  It continues to amaze us how big a deal this was to our therapists, coordinators, and teachers.

I do it because it helps the meeting feel more informal.  But I also do it, and I tell them when I’m there, because I appreciate what they are doing for my daughter, that they give their best to teaching and treating her.  It’s my way of thanking them, and showing them a small little bit of pampering for a couple hours once a year.  That’s doable!  And the response is so fun, too.  How can you not want to do something nice for people that they tell others about and keep smiling about for months?!?  And it takes very little time, effort, or money.  Win-Win!

So this morning, I gathered up my muffins—chocolate chip, banana nut, and blueberry—and dropped the girls (and a few muffins, of course) off at Julie’s before the meeting.  Truthfully, I practically threw the girls into her house because I was running late!  Then I headed to QT to pick up a few donuts, for variety and color, and I also got 4 cups of 3 different kinds of cappuccino to take as well. (Caramel macchiato, French vanilla, and pumpkin spice)

I had the drinks in a cardboard drink holder, but as I turned into the school parking lot, I changed direction too quickly, and the drink holder went right over, with all 4 cups of hot drink.  I thought I was going to lose it…but I said—out LOUD, mind you—“This will NOT get to me today!”  I parked, picked up the cups, which had about half their contents left in them, and left the rest of the mess in the floor board of the van. 

As I walked into the school with my binder under the container of muffins, the donuts on top of the muffins and the drinks on top of the donut box, I passed a school staff member I don’t know.  She looked at me and said, “You’re the one!  You’re the one who brings food!  I heard today was your IEP!”  This cracked me up.  Before I even got there, members of my team were talking about how they were anticipating what I’d bring.  Awesome.

The team was very excited to see all the goodies.  The cappuccinos were a HUGE hit, even though there was less than originally planned, and everyone had plenty of yummies while we talked about Braska and her progress.

As I left, there were a few muffins and donuts left over.  I went to the classroom of Braska’s teacher last year, Miss N, and dropped off the donut holes and a couple muffins.  She’s pregnant, so she needs plenty of things to keep her day happy and her tummy full! (I took her leftover birthday cake last week, since I didn’t trust myself if I kept it at home.)  Then I went to the front office and left a couple muffins in the mailbox for our speech therapist from last year.  Both these ladies have now become friends, girls I just adore, and it’s fun to leave them a treat since they’re not officially on our team anymore.

So take the time, think ahead just a tad, and take something nice to share with your gang next time you have an IEP.  It makes a great impression, and how can helping your child’s caregivers feel appreciated be a bad thing??

Coming soon… the details about the IEP meeting.  Amazing!

(Oh, and if you have any questions about any of this IEP stuff, don’t hesitate to ask…)

Wednesday, October 20, 2010

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!

Monday, October 18, 2010

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.
Nebraska grandman1

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… 

Wednesday, October 13, 2010

31 for 21: More about eyes [ Down syndrome, glasses, eyes, nystagmus]

If you missed the previous blip about Braska’s eye appointment, you can start here.  This is gonna  be a long one, but if you’re have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday.  One was the tilting chin-up habit that Braska’s been perfecting for over a year now.  Though it has become more persistent and more extreme in the past few months.  The other issue is that she has been unable to sit on the couch and remain engaged in her shows.  She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that.  Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went…  Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices.  I explained how she looks down her nose at everything that required detailed attention.  I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it. 

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers.  We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly.  We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor.  She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing.  This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly.  She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something.  When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead.  Like she didn’t have the strength to open her eyes all the way.  She CAN open her eyes, don’t misunderstand.  But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again. 

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor.  We did have this evaluation done, and the OT was great.  She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should.  Crazy stuff, I think.  This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes.  Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this…  things that don’t seem right often aren’t.  I was convinced that this was not just a quirky behavior or low-tone slouching issue.  And as it progressed, I insisted it be investigated.  I’m very glad I did.  Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska.  That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes.  He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does.  He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc.  He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon. 

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something.  He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged.  And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well. 

So we have answers, or at least the right start toward finding the answers.  That’s good.  I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done.  We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation.  I’d like to avoid another surgery, but it’s always a possibility.  We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask…  eyes are something we’ve had experience with.  She’s had her glasses for almost 3 years! Wow!

Wednesday, October 6, 2010

Braska: School picture day

A few weeks ago, it was picture day at school.  So we picked out a cute shirt that Grandma C got me in Montana and did my hair with my favorite big bow that my Aunt Karol gave me.  We like this shirt because it has tulips, and there’s 3 of them.  Tulips are my special flower.  I like when they grow in my yard, but for now I have to just have them on my shirt.

I know that I’m supposed to smile when Mommy wants pictures, but sometimes I just wanna get on with going to school!

Then sometimes I just get silly…


Mommy says she hopes the pictures from school were better and I behaved for the lady with the camera there. 

Shhhhh…It’s a secret……… maybe I’ll show you soon.

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.

Tuesday, October 5, 2010

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.

Sunday, October 3, 2010

Me ‘n Jack: After school pictures

Me and Jack aren’t in the same class this year, but our classrooms are just next door. Sometimes we get to see each other on the playground, and we always get excited about that!  Our teachers things it’s pretty funny.

But even though we’re not in the same class, we still like to do our cute outfits together sometimes.  Or at least our mommies like that.  And as long as we’re cute, it’s ok with us.

So after school a few weeks ago, we stopped for some pictures by our cars.

”We will stand here, but no one says we’ll smile.”

”Hold it in, Jack.  Don’t giggle! I think I’m gonna laugh!”

”Ok, maybe Jack’s too silly not to smile! And me too!” 

“That’s it! All done with pictures, Mommy.”

Saturday, October 2, 2010

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! 

31 for 21: Want an iPod touch?

I don’t have one, but I’ve got a friend or two who would NOT be without theirs.


Stephanie is offering up an iPod touch in efforts to raise funds for this little beauty to find a home.  Her name is Tori, she is in Eastern Europe, having already been transferred to the dreaded mental institution when she turned four, and she has a diagnosis of cerebral palsy.


Stephanie just returned from rescuing her two precious boys from this country, she saw the conditions that so many sweet children live in.  She has a heart to help them find homes, and she’s putting her money where her mouth is and putting up the iPod touch for incentive for others to join the effort.

It’s great. I will help her spread the word. Absolutely.

But really, it’s a little sad to me that we need to offer fancy prizes for people to donate five or ten bucks.  It’s still sad to me that people can’t just hear that this child will in all probability die in the institution where she lives with others of varying degrees of mental and physical disabilities and WANT to help bring her to a loving home.

Such is reality.  I don’t have any desire for an iPod touch, not really into any of the “i”gadgets at all.  But I am into kids who should not have to live in cement rooms without interaction from anyone who can love on them.

Many of us bloggers are doing this 31 for 21 thing…a great time to find blog content for posts.  So I ask… can you AT LEAST share Tori’s story and hopefully donate a bit to her account as well.  We want to help a family find her, help a family afford the adoption process, and help that family bring her home soon?

Friday, October 1, 2010

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!