Sunday, October 31, 2010

31 for 21: The bigger bugs

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The girls are way more what you want to see….trust me.  Click over here to see the rest of our day.

And Happy Birthday to the best mother-in-law I’ve got!

(I kid!!!  She’s good.  I’ll keep her.  And she knows I love her even when I tease.)

And congrats to all of you who hung in for 31 for 21 for the whole month!!  Continue the awareness, people!

Saturday, October 30, 2010

31 for 21: A bit more about feeding Braska

There are a couple more things I wanted to touch on, and I thought that Cate’s question regarding this post was an excellent place to start…

I totally hear you on patience. It's hard to go at someone else's pace. Do you have something to do while she's eating? I read your post thinking that it would be good knitting time. That's my choice for something that makes me feel like I'm not just waiting, but I'm still engaged and paying attention. (Thanks for the input and the question, Cate!)

One of the most difficult parts for me right now IS the waiting, but it’s a different waiting. Braska can feed herself with a spoon, but it’s very slow and she will only do one or two (rarely) bites at a time. And remember, we’re talking purees here… yogurt, mashed potatoes, blended meals…things that fall off the little spoon easily.

So there is a lot of guiding, assisting with proper hand position so she doesn’t drop the spoon, helping her get the spoon back IN the little bowl, etc.

One more clarification… at this stage, I do NOT blame the DS for her feeding issues. I don’t consider this a “DS thing.” She is so far past even the delays that can be typical-to-extreme for DS that I now don’t even give DS the credit for her issues. Yes, it was initially the heart defect that interrupted feeding progress, and yes, her very low tone plays a significant part, but I believe, and some of her caregivers agree, that at this stage, she is dealing with a combination of issues that outweigh the “kids with DS have feeding issues sometimes” philosophy.

Working with Braska on feeding is a very active task, yet with a lot of breaks, though they are short.

For instance…if she starts out with a blended meal of meat and veggies, she will usually—when prompted a couple of times—pick up the spoon and put it to her mouth. She doesn’t always get it in her mouth fully, but she’s getting better. But because her fine motor/hand strength is SO lacking, she has trouble even managing the spoon correctly and then moving her wrist around to get it in the right place. This is really work for her.

So after one bite, she will leave the spoon in the bowl. If it were up to her, she’d sit there for hours before she’d attempt another bite. Hungry or not… and she really doesn’t even register hunger in a realistic manner anyway. So I can prompt her to try again, “scoop and bite” as we call it, and SOMETIMES she will do it again. Mostly she will just look away and ignore me.

I generally will take over for a bit, feeding her, and she accepts the food relatively well. We wait several seconds, if not 25 or 30 sometimes, between bites. I reload the spoon right away and hold it out in front of her, ready for her to move toward it and open her mouth. But there’s still the waiting. She needs the time to clear her mouth and be ready for the next one. I offer the next bite, and she will either take it or she will say, “Nofankyou” in her oh-so-polite-but-not-budging manner. Then we either try another something, like offer a bite of yogurt instead of her “entree” food, OR we attempt a drink.

Drinking is a more difficult situation. She does not like to take sips. And when she does drink, that’s all it is. It’s very much an art to getting the cup held/tipped in just the right manner so the milk is at the rim of the cup, because when she opens, you have about 0.0003 seconds to get something in there before she closes again. Occasionally she will be more willing to accept a little, but mostly she prefers not to mess with a drink at all.

And yes, we’ve tried every cup, bottle, straw contraption, and other possibility out there… I’ve got boxes of barely-used items to show for it.

Once she tires and won’t cooperate to assist with the meal any longer, I take over and feed her the rest. This doesn’t mean that she’s suddenly happy, like she got her way not having to feed herself, she STILL doesn’t want to eat. But she is getting much better about accepting food by mouth when I feed her, and her pace is picking up.

So you can get a picture of how it goes. It’s not really feasible to DO anything in the midst of the process because I’m always doing something even if there are little tiny pauses. She is not in a place where I can be near but not involved.

Very rarely, in the morning, when she’s eating yogurt—her favorite thing, if there is such a thing—she will feed herself 6 or 7 bites over several minutes while I’m preparing Kinlee’s breakfast. But it will always come to the point where she just won’t/can’t continue, so I help her finish.

Now let me be clear about something important… This process I describe is frustrating and hard, it’s taxing on her and on me, but we are FAR ahead of where we started, and though the going is slow—VERY slow—we ARE…SHE is… making progress, and I’m very glad about that.

But I hope this helps you get a picture…where she is on the spectrum of “feeding issues.” Many kids have problems with feeding, and the issues vary greatly, but when someone says to me, “Oh, I get it, feeding is hard. My kid will only eat grilled cheese, spaghetti, fruit, or crackers, and just drinks milk all the time,” I understand the frustration, but I have to chuckle a little inside, because we are still YEARS from that level. She still does not know how to chew. Period.

Each challenge for each kid is real, it’s a hill to overcome. In this particular area, our hill is just really long and steep.

But she’ll get there… if I can just hang on for the ride.

Friday, October 29, 2010

31 for 21: Kinlee-isms #1

Kinlee is a talker. If you’ve spent much time around her at all, you’ve gathered this. At 20 months, she is continually surprising us with her conceptual understanding and use of her language. I don’t want to forget where she is at each stage, so I thought I’d jot some down for documentation purposes.

These are things she has said in the last couple of days… no words added. No word tense changed. Phonetics used when she has her own little pronunciation.

  • I want to eat cereal.
  • Mommy’s eating turkey.
  • My foot hurts on temp-a-chure. (She had stuck the digital thermometer down her pajama leg, and she was stepping on it.)
  • My daddy go to work.
  • Braska’s diaper 4. KiKi’s diaper 3. (Diaper sizes, with the number on the front.)
  • I running around, Mommy.
  • Purple octopus in da book.
  • I ready get in the bed. Bunny, blanket, bink, please.
  • Mommy cook some noodles please.
  • My yogurt suh-tack-uh-ler! Thank you Mommy! (Spectacular is a fave lately. Thanks to Sesame Street’s Word on the Street.
  • Go to park wif Daddy? (I responded that we would have to see what Daddy said when he got home from work.) She replied: Ok, I ask him. (And then repeated that constantly for the next 20 minutes…) I ask him. Ask Daddy go to park. I ask him.
  • I found it! I found my cup.
  • I see da white airplane! (Pointing out the car window at a plane.) It’s right dair Mommy! Look a sky!
  • Mommy change a diaper. (With sz 3 diaper in hand.)
  • Mommy I hungry for some peanut butter jelly.
  • I want chicken rice lunch. I cook it too.
  • And her most regular request: I want to go to Jack’s house!

Of course she also spends a lot of time singing “Twinkle Twinkle” and her ABCs. She knows all her letters (upper and lower case), her numbers 0-10, her colors, shapes, and animals/sounds. She’s a big fan of her bath squirters, and she asks for her “animals” when she is “going tinkle” on the toilet. She counts them all out in my hands, naming each one… whale, dolphin, walrus, stingray, crab, shark, and seahorse.

She also can recite the entire book of Brown Bear, Brown Bear, What Do You See? And Braska can too. They take turns with each page. It's great.

I need to get some video…she’s just crazy funny with her vocab right now.

Thursday, October 28, 2010

31 for 21: Education without alienation

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…

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!

Tuesday, October 26, 2010

31 for 21: Better vision

Just a quick one… Braska’s not crossing as much with her new lenses. I’m hoping she’s adjusting. She hasn’t been taking them off, either, but she is still not sitting back from her shows as much as she used to. Maybe it’s just habit at this point. We’ll be doing some unscientific testing.

But the eye center never called back. That doesn’t make me pleased. I’ll be calling them tomorrow to follow up. I’m pleased she’s doing better, but they don’t know that. And they still need to respond to calls. Simple courtesy. This isn’t like them, so I’ll check in again.

Monday, October 25, 2010

31 for 21: Trying to focus

Braska’s got glasses. We’re all aware of this, I think.

On 10/11, we went in for a visit and got a new prescription.  I was hopeful that this would help her out, since Dr. S said that it was a pretty significant change.

We ordered the new lenses to be put into her most recent frames, and they were ready for us this past Thursday.  We picked them up, and she promptly began taking them off.

Braska doesn’t generally take her glasses off unless she bumps them and can’t get them back in a comfy position or if they are really dirty and smeared.  She’s been great since day one in leaving them on.  But not this time.  It was like she couldn’t see and kept taking them off to remedy the problem. 

When she is not wearing her glasses, her eyes turn inward quite significantly, though just one at a time.  One of her issues is that her eyes don’t seem to work together as well as they should…partially due to muscular weakness.  We’re used to seeing the crossing when her glasses aren’t on, but with the new lenses, she was still crossing with the glasses on.  That’s not good.  The glasses are supposed to make it easier for her to focus so that she doesn’t have to strain to do so. It’s the straining that causes the crossing, they tell me.

So we went back to her old pair of glasses for much of the weekend because at least she would leave them on, and though they weren’t giving her the best vision, it seemed better than nothing.

This morning I called Dr. S and left a message about the situation with the front desk.  I asked that he call me back.  He didn’t today, so I’m hoping to hear back early tomorrow, or I’ll be making another call.  I’m wondering if he feels that there will be a period of adjustment as she learns to see with the new prescription. 

I asked her teachers to watch her today and see if they noticed.  She wore her new glasses to school and seemed to do ok.  They said they didn’t notice any problem.  And when she got home, I noticed the crossing was somewhat less frequent, so maybe it is just an adjustment thing.  We’ll see…

But I have to say, nothing frustrates me quite like seeing her try to look at something and have her eyes go all strange.  How confusing must that be for her?!  Vision is something so precious, and so important, and yet so fragile in a way.  It bothers me to see her try so hard just to see something the way I already see it naturally.

Then again, that’s kind of the story of her life. And she takes it all in stride.  Crazy little tough girl.

Sunday, October 24, 2010

31 for 21: Cooking for the crowd

If you’ve been around long, you know that after church on Sundays, we drive down to the in-laws’ place to watch Bears football during the NFL season.  It’s a family event, with most of the family there each week.  We take turns doing lunch for everyone, and this week it was my turn again.

I don’t mind doing it, especially since for the next few weeks afterward, I don’t have to worry about Sunday meals. 

Today we had tacos. Always a hit with M, and since he’s the pickiest one in the bunch, it works well for everyone else, too.  I enjoyed my big taco salad.  Now if only I could learn to stay away from the cute orange and blue candies that are out and available…

Don’t miss Braska’s super adorable football day picture on her blog… and I thought that kid would not be able to join in family events.  Wow. I have sure been wrong A LOT when it comes to what I thought those first few weeks…  Go Braska!

Saturday, October 23, 2010

31 for 21: Speaking for awareness

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.

DSA-STC-collage

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.
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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

Comments: #1

I’ve thought for a long time that there is alot of good in the comments we leave on each other’s blogs. And sometimes I have bits of something that I leave on someone’s blog and I think that I should share it with others, because it’s likely to apply to more than one person. 

So I’m going to be starting a series that shares my comments.  Maybe that’s thinking too much of my own thoughts or cheating as far as blog content goes, but I think it might be interesting.  Feel free to join me in sharing your comments on your own blogs… I know many of you have left notes for me that held a lot of wisdom!

Here we go…..

Responding to this post, regarding my good friend Jen’s dream that she was offering up for analysis…

Well, dear, you know me well enough to not be surprised at this...and I'm no dream analyzer pro or anything... but if nothing else,  I'd go with the one question.  Are you ready?  If not, get that way. :o)  Then you're good to go whenever and wherever. Be ready to go, and be ready to stay. Bases covered!

As for me, I don't want to miss out on anything, I don't want my girls to miss me, but am I ready?  Yep.  100% ready. Happy to go home as soon as my HOME is ready for me. Happy to stay here with my bunch for as long as I'm needed.  Win-win!

Hugs, girlie!

Go by Jen’s blog and check out the dream and offer your own thoughts!

31 for 21: IEP 2010, Part 1

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…)

Thursday, October 21, 2010

31 for 21: Anyone like Chevy’s?

If you’re anywhere near St. Charles, Missouri… OR if you’re willing to COME to St. Charles, there’s a great reason to eat at Chevy’s this coming Saturday, October 23. 

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There will be a fundraiser for Dashlyn’s adoption fund at Chevy’s on Saturday, October 23, ALL DAY! 

What do you need to do? 

Just come and eat at Chevy’s!  That’s it! They will donate 20% of your bill to Dashlyn’s fund.  YAY!

This is valid at the St. Charles location on Veteran’s Memorial Parkway, near Zumbehl and I-70.

(And you need a little mini-flyer thing to give them for verification…click here to be able to print one. Don’t forget to take it with you!)  If you have any trouble, drop me an email and I’ll send the document to you.  It can take a few seconds to open the file from the link.

Julie and Allan have been given their SDA appointment in Dashlyn’s country, and they’ll be leaving to go meet their girl on 10/30.  So soon!  Woo hoo!!!!  Dashlyn will be home soon, so come on out and pre-celebrate with us and share a donation by eating yummy food on Saturday!

Wednesday, October 20, 2010

31 for 21: Beautiful Baby Braska Part 2

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

Spring 2008. Pretty little bear… this one is interesting because she so rarely does the slack jaw thing. Especially at this stage of her life she was 100% opposed to things in her mouth, so she generally kept it clamped shut!
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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.
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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!
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Tuesday, October 19, 2010

My Birthday 'Observed'

I was picked up and swept away by my friend tonight. So I am enjoying Macaroni Grill with two lovely friends and loving the corvina. YUM!!

31 for 21: Birthday roses

My flowers are opening up, and I do love neat pictures of flowers.  Handy, huh?
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Monday, October 18, 2010

31 for 21: Beautiful Baby Braska Part 1

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.
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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… 
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More to come in a couple days… 

Sunday, October 17, 2010

31 for 21: Hope for the best yet

We’re hanging at the in-laws’ place, as usual, watching the Bears beat the Seahawks. (Wishful thinking…they’re currently behind by 10.) I’ve received some pretty cool birthday cards, some homemade, all very thoughtful. One even had a panda mermaid hand-drawn by Shay.

Did YOU get a panda mermaid on YOUR birthday card? I didn’t think so!

I received a generous gift card that I promised I’d spend on myself…the inability to generally do so is apparently a flaw of mine.

And one-of-these-days-sister-in-law Cheryl made me a lovely carrot cake with some scrumptious frosting! I’ve been back on the super strict diet for a few days, with success, but it’s my birthday, for heaven’s sake, so I had cake!

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(See what the cake says? Happy Birthday RK. And some of you think I'm just being coy online by using initials... )

Here’s to another year, hopefully my best yet!

Saturday, October 16, 2010

31 for 21: It’s not my birthday

Not for another 6 1/2 hours, that is. But today has felt like a birthday in a few ways.

We went down to Clayton for a grand opening of a new universal design/adaptive playground. The girls had a blast, we got some yummy and healthy lunch as a perk, and it is a Beeeeea-UUtiful day outside. Plus M got to schmooze with a few co-workers in a non-work environment. Always a good thing to show off your cute kids, I say. Thanks, M, it was a very nice outing!

This afternoon the girls and I did some shopping at Costco, and they were so good. Both in the cart without melting down. And with Kinlee on very little nap energy. I count that a win.

Then this afternoon my lovely sister Rachel came by to drop off my birthday present…OLYMPUS DIGITAL CAMERA

A dozen gorgeous white roses, and two tickets…for the two of us…to go see Michael W. Smith with the St. Louis Symphony Orchestra for his Christmas concert in December.

AWESOME!!!

My favorite Christmas album ever is Michael W. Smith’s Christmas. (Sadly, I don’t own it anymore. Boo.) They don’t come any better… I cannot wait. (Though I know he’s had a few Christmas albums since, so it won’t be ALL that one, but that’s ok!) I knew about this concert, but I also knew it was out of our reach since M took me to see SCC a couple weeks ago for my birthday. So this is a super treat!! We’ll have a sisterly night out, dinner and a show. And Rach knows how to do a night out, let me tell ya. It’ll be wonderful, no doubt!

Thanks Rach!!

Tomorrow’s the day, and I’m already celebrating. Not a bad way to do it.

Friday, October 15, 2010

31 for 21: Mom’s Car Exchange

I love cars.  They’ve been a hobby of mine since before I could drive.  Not like I work on them, but I like the pretty ones, I like the powerful ones, and I like to drive GOOD cars.  I really enjoy driving just for the experience when it’s a well-handling machine with spunky engine.

But I’m practical, too.  And especially in the last 2 years, I’m also painfully frugal, out of necessity, mostly.  This creates a problem…

Last year we opted/needed to get out of debt, and the only debt we had besides our house was the cars.  Two nice cars. Cars we loved.  I mean, we REALLY liked our cars. We were thankful for them, liked driving them, knew they were going to start when we turned the key and would get us where we were going in comfort and style.  They were “middle of the road” type cars in reality, but to us, they were perfect and we seriously loved our cars, though we NEVER forgot to be thankful for them every day.

Used to be mine…
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Used to be M’s…
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In June of 2009, we sold my Altima.  We’d listed both cars, and it sold first.  It returned to Champaign, which was fitting I thought, since that had been it’s home.  We got by with one car for a while, with lots of help from friends who picked M up for work when I didn’t take him.  It worked, and it was fine. 

At the end of August, we were very blessed to be gifted a Toyota Sienna that my parents had just replaced.  It was well used but in good shape, and we were more than happy with it.  I was excited to try out this “minivan life” that so many raved about.  (And yeah, I’m a fan!)  200,000+ miles on it when we got it, and it runs like it’s only half way done.

But the truth was that we still needed to get rid of the other payment.  We couldn’t afford it any longer, and we needed to let the debt go.  We advertised the Mazda for quite a while with no real hits.  Finally in December, we found a buyer, a dad who bought it for his teenage daughter who had wrecked her car the week before.  (That kind of thing STILL amazes me, how parents can just buy kids cars…and spend serious money doing it!)

Once again we returned to being a one-car family for a few months.  M’s job was only a couple miles from home, and the friends were willing to help with the commute to work.  But in May, he changed jobs, and his commute became significantly longer.  So we needed a second car and quickly.

As the cars are my responsibility in our family system, I set out to find one.  And I found a great deal on a really nice car!  So exciting!
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Unfortunately, this turned out to be a very expensive lesson.  We spent more on repairs in the first couple of weeks than we paid for the car.  And that was all just to get it to pass inspection!  *sigh*

Important lesson:  If you live in a state that requires vehicle inspection, GET THE INSPECTION BEFORE you purchase a used car from an individual.

Though I still kick myself for that situation and missing clues, the car served us for 3 months and got M to work and back. That was it’s job. That was the need we had. The need was met. So we’re still thankful for that.  In the end, we couldn’t afford to do further work that it needed, so we sold it in September for 25% of what we had in it.  Ouch.  But we were relieved to get anything, quite honestly.  And darn it, it was so pretty.  I fell for the beauty and the “good deal” instead of the reliability.

Even before we sold the Volvo, I had been looking for another car to replace it.  We wanted something very small, very cheap, and a car that passed inspections and needed no repairs.  Cosmetic issues were no concern, but it needed to be mechanically sound.  After several calls, investigating several cars, even going through a few test drives and inspections (which saved us!  The cars did NOT pass. Whew!) we opted for an Astro that was owned by someone in my parents’ church.  It was NOT what we had in mind, but it became the best choice. 

Not a bad looking, almost-16-year-old van. The interior was in phenomenal shape. (But RED!) So clean. Not worn and torn. Pretty amazing.  And a REALLY generous price for us. It drove like a small truck, and M didn’t care for that, so I took over this and M drove the Sienna.  We knew it would be a temporary situation.

The Astro has done it’s job.  It drove me a little nutty with the need to manually lock and unlock all the doors, and I missed my dual sliding doors A LOT!  But the girls and I survived, and it wasn’t that painful.  The hardest part was filling this van, as it was NOT fuel efficient at all. And it was rear wheel drive, so we didn’t want to have to deal with winter weather.

SO….. a week ago today, I test drove a car I didn’t ever think I’d be considering.  I had it inspected and it passed.  The deal was pretty good, the gas mileage was what I wanted, the seller was nice and very patient with my process, so there we were.

M’s “new” car… a 1999 Mitsubishi Eclipse RS.  It’s been in the garage for a week, waiting for us to sell the van to transfer plates and get the credit on the sales tax. So today, M took his new commuter vehicle to work.
 

Other than evidence that the previous owner, a young lady, was not well liked by at least one person carved into the driver’s side, it’s not a bad looking car.  It’s not perfect, but it’s great for it’s purpose.  All at way less than $3K.

Once again, we’ve been provided for. Our need has been met.  We were able to do all this with cash and still have some savings left…though not as much as we’d like after all that the Volvo consumed.  

Who knows what the future will hold.  We hope and pray that the Sienna, which just rolled over 220,000, will go for a good long time. It drives really nice, and I’m SO glad to have it back today!  We hope that the Eclipse will do us well for at least a year, if not two.  We will be grateful for what we have every day.  The girls and I thank God for our cars (no matter which ones are “ours” at the time) every night in our prayers. Literally.  I’m thankful for what we have, though many would not consider these to be desirable. I think they are pretty darn great.

But for the record. I am DONE buying and selling cars.  Mom’s Car Exchange is CLOSED. 

Thursday, October 14, 2010

31 for 21: Questions about eyes

There were a couple questions asked after the last post about eyes…

Rochelle asked…

Has Braska had corrective eye surgery for it? (nystagmus)

And Katelyn’s mommy asked…

Has Braska had surgery to work on correcting vision? If you have any advice on things we should specifically bring up to her opthamologist, I'd love to hear it!

The answer to both is no.  But to elaborate a little, nystagmus is not generally corrected by surgery, or at least it doesn’t generally NEED to be corrected by surgery.  We have been told from day one that is doesn’t really affect Braska’s vision, that it doesn’t cause everything she looks at to shake or wiggle, as it would seem to me.  That said, she does seem to notice it somewhat, because she tries to avoid it, which is what causes the “finding the null point” issue of tipping up, or looking down her nose.

As for other corrective surgery, it is possible that Braska may need it at some point, but it would most likely be for muscular concerns, related to her esotropia (eyes turning in, crossing).  Currently, this is just a matter of her trying too hard to focus when she doesn’t have her glasses on, so it is corrected with her glasses.  This was the reason, along with farsightedness, that she got glasses in the first place.  As long as the glasses help the problem, we’ll continue with that.  There MAY come a time when surgical intervention of some kind is needed, and we’ll deal with that then.

One other thing, since Katelyn is soon going to be seeing the eye doctor and asked about what things to bring up, I’ll just say this…  I don’t have a lot of recommendations about things to ask, especially in one so young.  The exam will be passive, in that she won’t have to *do* anything, but they’ll do it TO her, per se.  Things to note before hand that might be helpful info to share would be things like how she handles toys, if she seems to bring them right to her nose or keeps them farther out.  You might watch her to see at about what distance things catch her attention as you introduce them into her peripheral vision areas.  Or at what distance does she engage in a toy if you bring it toward her slowly from far away.  These are things that the docs asked us when we were seeing them for the first few times when Braska was very young.

Lastly, I’ll say this about glasses… no one thing, except for heart repair, has made a bigger difference in Braska’s development or personality growth than these glasses.  A large part of me wishes that we’d gotten them for her at 6 months when they thought she *might* need them, instead of waiting til 1 year when they were sure.  Her development took OFF like wildfire in the days, heck—the HOURS—after she began wearing glasses.  It was truly miraculous to watch.  Being able to see without straining opened up the whole world to her.  It helped her balance (she sat independently the following day), it helped her play skills (she could coordinate her eyes and hands to reach things), and it helped her engage in interaction with us and others, because when sitting on our laps, she could see us clearly without crossing her eyes.

I have said many times that if you are told that your child *might* need glasses, think LONG and HARD about NOT waiting.  It’s amazing what a difference it can make, and if there is a “maybe” involved, then there can’t be any harm by improved vision, it can only help.   These young little ones are learning so much, and can be SO affected by their perspective.  I really think that the earliest that their vision can be corrected, IF needed, the better.

That’s my two cents on that!

Wednesday, October 13, 2010

31 for 21: More about eyes

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 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!

Tuesday, October 12, 2010

31 for 21: Birthday countdown

Today’s my brother’s birthday.  He’s 34.  His birthday is 5 days before mine.  So when his shows up, it’s about time for me to practice giving the next higher number when asked, “How old are you?” 

Admittedly, it’s not a common question since society is all proper now and everything.

Since my birthday present was the concert tickets to see SCC a couple of weeks ago, this weekend will be  a tad uneventful.  And that’s ok… I’ve had so many birthdays now that people are just darn tired of acknowledging them every year!

Happy Birthday, Jody… hope 34 is the best yet.

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(For his belated birthday present, he’s gettin’ a little baby girl!)

Monday, October 11, 2010

31 for 21: Eye vindication

We had a busy morning today.  Appointment with the optometrist at the Children’s Eye Center. 

Note to self: Do NOT try to take two busy toddler girls, especially one overdramatic and sleep-deprived tot, to an appointment where you need to hold one of those girls—to her dismay, not the drama queen—most of the time during the exam.  Not wise.

Dr. S is back! (He served overseas two times in the last couple years.)  He listened well, took notes, and validated my concerns and suspicions.  That is SO nice.  Too often docs are quick to dismiss and don’t listen long enough to get the whole back story.  I went in today with my info ready, my speech concise, and my concerns clear.  He took them all in and then observed.

Braska has had a couple strange things going on lately that I felt sure were related to her vision.  The most obvious is that she tips her head way back when she watches TV or looks at a book that I’m reading.  When she tries to focus, she tips back, puts her chin in the air, and looks down her nose. 

This has happened for over a year, and we’ve had her evaluated by PT, OT, and vision to find out if it’s a strength thing or if it is all visual.  There have been mixed reviews.  But I feel like we made progress today.

I’ll talk more about it tomorrow.  It’s a lot to get down, and I’m wiped out.  Check back for part 2.

31 for 21: Wide eyed

Hands full. At Children's for eye appt. LOVE these docs! B is dilated and we wait for part two of exam. Enjoying the atrium and some tator tots to keep KiKi close to almost not unhappy. More later.

Sunday, October 10, 2010

31 for 21: Note to family, friends, and various others

When watching football—or any other sport, or at any other time, pretty much—please know that little ears hear the words and little mouths can spit them right back out in a split second. 

Thankfully, we keep company (mostly. ahem) with those whose “bad” language is still very mild, relative to the general public, not even on the “bad word” radar for most, but today we were reminded just how fast those words can be latched onto and reused.

I’ve had to reorder my own way of venting momentary frustration—though my worst anger words aren’t bad enough to make the “bad word” list in the first place—but I’m still a work in progress. 

It’s all cute and funny til they come home and try it again.

Saturday, October 9, 2010

31 for 21: I feel. He says

I feel defeated.
He says

No, in all these things we are more than conquerors through him who loved us.
Romans 8:37 (New International Version)

I feel impatient.
He says

Wait for the LORD;
be strong and take heart
and wait for the LORD.
Psalm 27:14 (Today's New International Version)

I feel hopeless, unsure.
He says

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  
Jeremiah 29:11 (New International Version)

I feel worried, anxious.
He says

Give all your worries and cares to God,  for he cares for you.
I Peter 5:7 (New Living Translation)

I feel scared, weak, alone.
He says

"Be strong. Take courage. Don't be intimidated. Don't give them a second thought because God, your God, is striding ahead of you. He's right there with you. He won't let you down; he won't leave you."   
Deuteronomy 31:6 (The Message)

I feel done, spent.
He says

Do not fear any of those things which you are about to suffer…Be faithful until death, and I will give you the crown of life
Revelation 2:10 (New International Version)

And He is wiser than I, so I will believe what He says.

Friday, October 8, 2010

31 for 21: Not what you want to see on the floor.

While dressing the girls just now, I turned around to get Kinlee's shoes and look what greeted me in the middle of the carpet.

Pardon the phone pic. Camera is broken. And I did rescue it from the floor before taking a picture.

If you are not familiar, that is a Mic-Key button. AKA g-button or g-tube generically. That is how Braska receives 95% of her nutriton. And for those in the know, I am sure you noticed that the balloon is not broken. Nice. It works best when it is NOT in the middle of the floor. The feedings go better when it is actually in her belly.

So a new one has been placed. Though it took somewhat more force than usual. (Insert nauseous look here.) But we are back in business.

If anyone has any questions about buttons or feeding or the fun or a g-tube (They actually kind of rock in my book! ), this is a great time to ask.

Thursday, October 7, 2010

31 for 21: Beauty

I’ve mentioned before that Braska is often called Beauty around here.  (KiKi, too, she’s not left out.)  She’s got lots of little pet names, which we’ll talk about in the next day or two… some aren’t as popular as others. 

Last year I posted about Braska’s blog design, which is no longer there, but there’s an image below to show you what the background looked like. (Click on it to see it larger.)

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So I thought I’d put the image up again. Because I’m proud of it. Because it speaks to how I feel. 
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DS is no accident. It’s not a mistake. It’s not a goof-up on God’s part.  It is something that has brought a completely different story line to my life, and for that I am thankful. 

It’s not that I just love my kid and think she’s good as is.  I appreciate all the things about her extra chromosome that make her what she is.  I have said many times that I wouldn’t take away the DS if I could.  It’s who she is.  I’m not offended that everyone knows she has it.  I tell people frequently. Pretty much every chance I get. I’m proud of it. I’m proud of her.  Every cell of her body has it, so I’m not interested in trying to separate her from it.

DS is not all rainbows and clouds, of course.  There are challenges, and there always will be.  There are frustrations, no doubt. It’s not always easy, but really… have you met KiKi?  She’s far more challenging a child, though I love her dearly, but she is definitely the cause of more stress, more frustration, more work, and more moments of sitting with my head in my hands because I don’t want to yell. Again.

So yes,  Down syndrome is beauty.  It’s many things.  This is the one that’s primary for me. I believe that beauty encompasses it all. Inner and outer beauty.  That frequent smile and always-ready forgiving hug.  Pure beauty.



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Wednesday, October 6, 2010

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

Route 66

It is a beautiful day for a little road trip.

31 for 21: Go Bears! Take 1 Or 2 or 3

Simple request: Family Bears picture.  It’s a yearly tradition.

Sure thing. No problem. We’re all dressed in BearsWear every Sunday…  just snap a pic, right?
 

I could caption these, but I’m sure you get the idea of how it goes.

Saturday, October 2, 2010

31 for 21: walk in the park

Walking the warning track at Busch Stadium with about 4000 others for DS awareness...Walk In The Park. Then the game. Go Cards!

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.

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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.

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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

31 for 21: Welcome back!

Here we go!

(If that’s all I said, would it count as day 1?)

I’m not sure how I’ll work the schedule to get this done, but I want to do it. I want to work through out loud some of the things that have been bouncing around in my head.  I might get much less sleep this month, but oh well.

And to all you fellow 31 for 21’ers… don’t forget the beauty of scheduled posts.  Throw up a few when you get time and it will cover you for a few days, posting one per day.  If you don’t know how, drop me a line.  Super easy!

Take the time to click on the button to the right and visit the list of those participating.  There are some great blogs out there that I’ve never known existed, so many new friends to make!

And if you’re visiting because you’re browsing the list or checking me out from Tricia’s link in her post, glad you stopped by.  I’d love to have you along for the ride, so click on the “Follow!” button to the right and you’ll be on our adventure with us!

Let’s have a great October.  Make it a goal to share positive things you know about people with DS…with friends, family, cashiers, doctors, and waiters… we’re not picky!  Just spread the word!