Dress up party

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

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


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


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


And I said Hi to Daddy through the strings.


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


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

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


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


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


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


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

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

31 for 21: 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.

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

Braska took two of her meals today orally. 

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

Ahem.

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

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

This is HUGE!

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

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

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

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

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

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

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

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

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

31 for 21: 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 2^nd 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.

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…)

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

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

Spring 2008.  Pretty little bear…

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

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

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

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

So enjoy this little walk down memory lane.

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


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


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


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


More to come in a couple days…