- How could it possibly be October 31? I feel like my current schedule is causing days to slip by without my even being aware. Not my favorite thing.
- Down Syndrome Awareness Month… and I didn’t hit the things I really wanted to talk about. Does that mean I really didn’t want to badly enough? Or does it just mean that I didn’t set aside the time I needed to, TV-free and post-bedtime, to formulate properly the thoughts into orderly paragraphs? For those of you who haven’t been around since the beginning, here’s a few links back to old posts that might be of interest to catch you up on me, us, and life at our house.
- The “first date” AKA crazy stalker guy from Montana, the proposal, finding out and telling family we were pregnant, ultrasounds and elevated risk, a day of labor, a special delivery.
- The favorite of many… the snip/tuck saga.
- Some hot topic posts… Prenatal testing, taking a stand (still missing it’s part 2) on abortion and follow-up epilogue.
- A few posts about phraseology and terminology in the DS world, here, here, and here. Different slant than that of many, I admit.
- Back to October 31… it’s my mother-in-law’s birthday. She’s a good one. You should all be jealous. (Happy Birthday to Rainer, too!)
- Lastly about October 31, I’m so not a fan of Halloween. I would love a dress-up-in-cute-costumes-and-have-fun-parties type of holiday without all the dark, scary elements. I do enjoy the fun that is picking cute costumes for the girls, of course. But the rest of the holiday… no thanks. I generally avoid the night of the 31st completely, just staying in. We have gone to our church’s fall festival in the past few years, but this year, we skipped. I don’t want KiKi having all the candy (or any, really), I definitely don’t want to have to be tempted by it, and Braska could not care less. So home we stayed tonight. And it was kind of nice. I’m quite aware that it won’t always be that simple, and I’m not a total spoilsport, but while it’s not so much on their radar, I’m good to let it slide.
- I may take a few days off from posting, depending on what happens and if I have time without “making” time at 1am to do posts. But you’ve got plenty of old links to check out up there if you’re new around here. If you’re not new, leave a comment every time you come and don’t see new content… that would be fun! Remember that if you sign up on the side for email subscription or join as a “member” over there, you won’t have to check back. Your snazzy computer will tell you when there’s something new to see.
- Speaking of leaving comments… are some of you having trouble? I have had this mentioned a few times, and I’m wondering if it is broader than I figure. If you have a Google account, is it giving you problems to make a comment on this or Braska’s blog? In case you didn’t know, you can always use the “Name/URL” option, put your name in the box, leave the URL box empty, and comment that way. It’s nicer than “anonymous” but still doesn’t require a login. Just so ya know…
- Finally, I will be attending the memorial service of a 4-year-old girl on Sunday. I’ve been to literally dozens of funerals in my life in various capacities, but never one like this. It will be a celebration of her life, complete with lots of pink and popcorn, I hear. It will be difficult to attend knowing the loss that has occurred, but so much farther beyond excruciatingly devastating for the loved ones there. Please continue to pray for Maddie’s family, especially her mother.
Monday, October 31, 2011
Sunday, October 30, 2011
Last year Shutterfly sent out a great offer to many bloggers that brought the reward of free Christmas cards. It made doing Christmas cards so easy and enjoyable, really. I had gotten out of the habit of doing real cards at Christmas, but I really liked giving and receiving the cards last year. Here was what we had for our cards last year…
(Funny to me how the girls can look exactly the same, just with KiKi having longer hair…)
So far these are some of my favorites for this year…
From the Christmas card collection.
From the Holiday Card collection.
And the photo books… they are ALWAYS fun to do!
This year, we got a similar offer (YAY!) and in addition to cards for me, they also allow me to give cards to YOU! Three of you can win codes worth 25 free cards!!! That is worth commenting for, right??
So leave a comment on this post with your FAVORITE part of the holiday season. Is it parties? family traditions? presents? shopping? food??
And I’ll choose 3 winners to receive 25 free cards each on Friday night, 11/5/11.
To get you started, I’ll say that one of my favorite things is the first Christmas event I get to attend. It’s most often a musical event of some kind. I just LOVE Christmas concerts, plays, etc. I always like to have one in early December to get things kicked off just right… so far I don’t have one on the calendar, so I’ll be looking for a great one!
Also, more soon on this, but start thinking about the Happy Bloggy Holiday Card Exchange! I’m hoping we expand to quite a few more than last year!
Saturday, October 29, 2011
I was divided today. I held Braska for a while this morning in the recliner in her room, as she went back to sleep after crawling into my lap. I should have been taking a shower. But I just kept praying for the mother who would never know that feeling again. (Unfortunately I know too many mothers whose arms ache for their little precious ones, gone too soon.)
I enjoyed watching my girls go to dance class with their friends and do a GREAT job, prancing around in their Halloween costumes and being adorable. But I had tears slowly rolling down my face as I thought about Maddie never dancing here again. (Though I happen to be quite sure she is dancing with Laynee and Carly right about now.)
I drove all over the metro area today, between dance class and visiting PaPaw so he could see all the cuteness and get some hugs, then going to work and jetting over to catch the end of a birthday party. As I drove, I got a very ill feeling several times, thinking how mundane it is to maneuver our vehicles every day, but how quickly they can become dangerous. So quickly.
I sat and watched my girls enjoy their friend’s birthday party, surrounded by his family and lots of smiles. There was a moment while I sat there that I imagined what another family was feeling tonight. The focus again on a sweet child with Down syndrome, beloved by so many, and yet there are surely not many smiles there.
So many beautiful opportunities today to celebrate being a parent to these two princesses and dozens of hugs, kisses, and laughs. And I cherish them. I do. But today, I almost felt guilty for enjoying them when I know a friend is so desperately hurting. And yet, I’m sure, the embracing of the moments like these are what mothers who have lost littles would most vehemently encourage.
It’s still hard to feel divided. And even in saying that, it feels irreverent to say anything is “hard” when this is not even remotely about me and my sadness. The pain of those freshly wounded is the focus. It’s the focus of my prayers, and that is by far the most powerful thing I can offer. Hold them, Lord. Hold them so tightly.
Friday, October 28, 2011
This precious beauty’s mother is hurting tonight. Hurting doesn’t even begin to describe it, I’m guessing. Little Madison passed away today after a very tragic accident. Please pray for her family.
There are a couple more pictures of her sweetness on Braska’s blog.
(Please feel free to post this button and please pray for this family.
Thursday, October 27, 2011
Wednesday, October 26, 2011
It’s all about perspective.
It seems like I’ve said it 1000 times in the last few years, probably almost 6 years if I’m judging by the circumstances that I think brought me the most real.life.perspective.
But lately it sure seems like I’ve been saying or at least thinking it more frequently.
I don’t like having a job that eats up evenings and many weekends. But I’m glad that I was able to find one when I needed to and that I do actually enjoy working there. It’s all about perspective.
$300 is just not a lot of money to feed four people completely for an entire month. But I’m thankful that we’re able to do it. And many people would feel ecstatic about having that much money to spend on food and necessities. It’s all about perspective.
I’ve been really missing the community element lately, having a core group of friends whose lives intersect with ours at several levels like we have had in previous eras in our married life. We have friends, good friends. But we do miss the closeness and shared values and family and spiritual goals like we’ve had before. And we miss being able to hang out with friends casually and often. And yet—we now have our families close. We see them often and they’ve become kind of like our core friends. It is different, but it is nice at the same time. This is just the season we’re in. It’s all about perspective.
My daughter is delayed. She has Down syndrome. She doesn’t know how to chew at this stage (though she’s getting better and that’s NOT a “DS thing” by the way). She needs help to do most things still, even at almost 5. BUT—she is the brightest light in my day, the go-to girl for a great hug, a big laugh, and a sweet spirit. She makes hardly any mess at meals, which I count a perk! And she has introduced us to an entire world, including some of the most amazing people, therapists, and opportunities, that we would never have known. It’s all about perspective.
So today after I cleaned a house this morning as a side job, then returned home and managed to find the energy to tackle mine, I paused a bit as I surveyed my freshly-ordered kitchen with pride.
I was surprised that I was proud. This is not the picture of my ideal kitchen. It would include totally clear counters and matching appliances, just for starters. MUCH less on the fridge, both on top and on the front. And the clutter on the chairs…lunch bags and bibs, boosters that don’t match. Wallpaper border on the wall that I swore would be gone the minute we bought the house, yet it remains, in places, 3 years later. All these things are not part of my “ideal” picture, something that I would expect to see before I’d feel pride in my kitchen. (I talked about my “lowered expectations” in my kitchen a few months ago.)
What I realized as I stopped to look around this evening is this… I’m proud because this kitchen speaks to so many things about my life right now that are GOOD. The boosters and bibs are for two healthy girls. The fact the table is even there and being used is a huge deal in itself. The lunch bag marks M’s job that he likes. A lot. And that’s more important than I can explain. I have lovely flowers on my table that my husband sent me for my birthday. And they’re lasting a long time, which is so nice.
The clutter on the counters marks not only an abundance of provisions for our family, but also the time I spend doing other things. I’m not so bent on getting to the place of pristine counters that I neglect reading the 23rd book of the day to the girls, or stopping to go outside and crunch leaves for a while with them, or going to a playgroup to meet and encourage other moms who are following behind us on this DS journey. The stuff on the fridge represents everything from family friends’ pictures to scriptures that encourage me, to art the girls have done, to contact information for physicians we like and businesses that have treated us well. There are notes about school events, our very active community group for DS, and coupons that will save me money.
Is there a more organized way to do it? Sure. I wish everything had a handy home and it was out of sight. I’d love to have twice as many cabinets if not even more than that. But we live in a small house. The sum of these two pictures is about 1/4 of the whole thing, not counting the basement. To say space is limited is a serious understatement.
But even in that, the smallness of my house, which I have struggled with frequently over the past 3 years, I can now see the benefit. Less to clean. Less room to store junk we don’t need. Forced purging opportunities show up often. And goodness… we HAVE a house. We live with warmth on cold days and have comfy places to sit and sleep.
It’s all about perspective.
I fail often at this attempt to look on the bright side, to focus on the “thank you” instead of the “I want” tendencies I have. But tonight, I was pleased and I am grateful that this once, I had a perspective that allowed me to look at partially clear counters, freshly mopped floors, and a clean table with fresh, appreciative eyes.
What about you? Where do you notice your perspective changing?
_________Now, as a reward (or punishment??) for making it through all that__________
I give you the OUTTAKES…. while I was attempting to take pictures, my oh so goofy husband was prancing around in my way… yes, in only partially clothed fashion. This is what we do with all that free time that used to be taken up with friends and socializing! Don’t you wanna get in on this action??
Tuesday, October 25, 2011
Monday, October 24, 2011
Since I’m not in the right frame of mind for writing the things I just SWORE I would get covered this month, I’m going to refer you to a couple other things to check out.
~Keep on Spinning had a very interesting post recently… Prenatal Test for Depression. I thought it was an intriguing perspective. Glass half full kind of thing. What are your thoughts? (Respectful, please, of course.)
~Kellsey is having surgery Tuesday morning to join the g-tube club. Please pray for a successful and smooth procedure. Even though we’re on the way out (finally!!!), we are definitely big fans of the little device I first put off for months after it was first recommended. It made me go back and look at the beginning of our journey with Braska’s “second belly button.” And man was she cute back then! There was the first procedure, some follow up, the report by B 1 and 2, and then the conversion to the button from the tube.
She is 4 years older and 12 lbs heavier now. Growing slowly but surely!
Sunday, October 23, 2011
I hope you’ve been by Braska’s place to see her latest post. It featured a picture from this morning… and I cannot get enough of that picture. I see so much there. I don’t know if I can flesh it all out in writing right now.
But I did want to use it for a new siggy. So I played a little today. I use Photoshop Elements for my various image work, blog designs, logos, blog buttons, and photo edits. It’s not the big bad professional Photoshop, but I don’t have hundreds to spend on such things. PSE works just fine for me.
After some playing and a lot of changing my mind, I have ended with this…
I’m pleased. I had something different in mind, and maybe I’ll do another later. But I like it.
Lissa also graciously did 3 awareness ribbons for me recently, with DS colors. They are here if you’d like to get them from her. Be sure to leave a thanks for her for doing that by request for all of us!
Remember, if you need a siggy or a fresh blog look or just a cute collage for the cover of your little one’s school binder, drop me a note with what you’re looking for and we’ll make neat things together!
And can I just say how cool/weird/fun it is to see one of my buttons flying ALL over the blogosphere?? With lots of input from the fabulous Tricia, of course, my most famous image is obviously this one…
Grab This Button
Saturday, October 22, 2011
(To all you new friends from the blog hop… thanks for hanging around! I’m honored! If anyone has any questions about me or Braska, just ask!)
It’s been a day of dance class, playgroup, and teaching the 3-year-olds at church tonight. (All of that was Mommy and KiKi time… Braska hung with Daddy today just to be sure we get a bit farther in recovery from Wednesday’s eye surgery before we risk eye poking, dirt in the eyes, etc.)
And since I’m tired and spent my evening watching the Cardinals WIN… (How much do we love Albert, yeah?!? He’s not only a great DS advocate, he’s a darn good baseball player! tee hee)… I’ll just share this really fun card Julie gave me for my birthday. Too bad I’m recently back on the extra-super-healthy eating plan. But the sentiment cracks me up!
Friday, October 21, 2011
Crazy Beautiful Love is hosting the Hoppin’ for 21 Blog Hop today.
Oh! And there IS a prize involved. If you link up your blog to the Blog Hop, there’s goodies to be awarded! So go check it out!
If you’re hopping over from the Blog Hop, Howdy! Glad you came by! I’m RK, mom to Braska (almost 5) and Kinlee (2 1/2), wife to M. We’re in the St. Louis Metro area. I’m into putting my kids in cute girlie clothes, bows, doing digiscrapping when I get a minute or two, Bears football, and currently a little Cardinals baseball. I’d love to have you as a blog buddy, so leave me a comment and click on the “members” button on the right, and I’ll be sure to come check out your blog, too!
Thursday, October 20, 2011
This is my post. My one for today.
My daughter has Down syndrome. And it makes her pretty great, I say.
There. I even managed to continue the official awareness of the month.
Wow. Look at me go.
One very “tuckered” mom, as my girls would say.
Wednesday, October 19, 2011
I’m worn out. But I’m thankful.
For access to great medical care. For NO months-long waits to get that medical care.
For family who helps out in so many ways, hands-on, with gifts, prayers, or time.
For friends who check in often, and who send smiles of encouragement.
For my girl, who is some kind of miracle that she can have endured so much in her short life and still waltz into the hospital with the charm that is her calling card and win over all her new friends today.
For my bed. I love my bed. Always, but especially tonight.
Thank you for your thoughts, prayers, well wishes, and love. We are blessed to receive them all.
Seems funny to rest after sleep, but that's the best plan for little miss. She has a pattern when coming out of anesthesia, and it includes a little nap after the first while of being upset and uncomfortable. Then she wakes and feels way better and usually is good to go.
She is napping now, so I hope we are better and heading home in an hour or so. But no rush... this is kind of nice.
Tuesday, October 18, 2011
Tomorrow we take Braska to Children’s for a trio of procedures. Maybe. Might only be a duo.
She’ll be having a modified Kestenbaum procedure, which is a rare eye muscle surgery relating to the specific type of nystagmus that she has. This is to help correct the tip and tilt elements of her posturing among other things.
She will also be having a dental cleaning and x-rays done by the dentist. She has horrible terrors at the dentist’s office, so while she’s under with the eyes, he’s going to get in there and do a thorough cleaning and get good x-rays.
And while they’re at it… the ENT, who will be working next door tomorrow in another OR, will be peeking in to take a look at her ears and probably put her second set of tubes in while he’s there.
I mean if you’re gonna knock a girl out, might as well take care of a few icky things at once, right??
We start the day early, but not as early as we’d expected. She should be heading back to the OR by about 8:30 am I would guess.
I’ll be trying to update on the blogs, but following the Twitter feed either via Twitter or on the right margin of this blog might be a up-to-the-minute option, if you’re into that kind of thing.
Prayers for complication-free procedures, very alert and wise OR staffers, and strength for us as we comfort her through it are very much appreciated.
Monday, October 17, 2011
Sunday, October 16, 2011
I was falling asleep during the football game tonight. The game the Bears won! Woot! But for ME to be falling asleep during football…sure sign that I’m beyond tired in a big way.
So glad for the win though.
And now I’m doing my best to make it through the bottom of the 9th to see the Cards win the NLCS and sew up their World Series spot. It’ll be fun to have the World Series in town again in two days.
Bring home the win, Red Birds!
And we survived another crazy busy, run constantly, overlapping events kind of day. I need to really stop letting these happen, but what to give up? The job that eats up my weekends that we need for ends to try and meet, the community of local DS friends who are really stepping up to have great events, or the daily chores around the house and for the family. Tough stuff to whittle down.
But the fact that we have so many great things in our life as a family… win.
Good night. The Cards just did it. World Series, come on over to StL… see ya Wednesday, Rangers!
Saturday, October 15, 2011
I’m in the midst of a very busy season. It’s a bit hard for me to keep my sanity when things are like this. When the obligatory “how are you?” gets asked, this is what flashes in my head….
But I always say, of course, “oh, I’m fine.” Or if I’m feeling more honest, “I’m doing ok, thanks.”
When the truth is that I’m yearning for something like this to be my lot…
Days like today…
*Up at 8 after nicely being allowed to sleep in a little.
*Scrambling to get two girls fed, dressed for dance, myself ready for work, and out *the door in just under one hour.
*9am leave for 30 min drive to dance class.
*930 to 10 am at dance class.
*10 am head back home to have M grab the other car and we all go to the Y.
*1045 arrival at the Y. Quick change for Braska from dance outfit to swimsuit for lesson.
*1115am get Braska dressed, assist with KiKi finishing lunch in the lobby with Daddy.
*1130 begin work, wave bye to Daddy and the girls who head home.
*5pm close up and head home at 515.
*520 arrive at home, kiss silly girls, jump in the shower.
*In the following 35 minutes—shower, dress for church, do hair and makeup, dress two girls and do hair, pack bag for Braska’s dinner since we’re going out after church.
*555 pm head out for church.
*600 arrive at church, trek up to the children’s area and drop the girls off.
*730 church is over and we head to dinner with sis and bro-in-law for my b-day mini celebration.
*930 arrive home with one girl asleep and one almost. Change girls, tuck into bed.
*1000 pm turn off lights, grab computer, and park in bed for last minute blogging.
Maybe some people can handle this kind of schedule all the time and never flinch. I’m not one of them… but I’m thankful I now can go to sleep in my super comfy bed and rest up for another BIG day tomorrow.
Friday, October 14, 2011
The precious Little Miss D’s mom recently made reference to the fact that her little one hadn’t ever slept in a crib. I asked her about it because, well, I’m just nosy that way.
Today she replied and explained a bit more… and it brought up something I’ve been meaning to discuss anyway. What were the sleeping locations for your kids when they were babies? Same room, different bed? Same bed? Different room altogether? (That one’s my fave!!) Or just wherever the heck they wanted to sleep?
So my comment is below… share your experience. The same for all your kids? Or did your kiddo with DS do anything different in the sleep realm?
I find this stuff really interesting.
Thanks for explaining!! :o)
I can't stand to have the girls in the same room, let alone in my bed. I'd never get a wink of sleep... every breath, every little sound wakes me. And that doesn't make for a pleasant mommy the next day!
So Braska was in our room for a few weeks pre-surgery in a special bassinet, but once that heart was ok, she got the boot to her room! :o) Kinlee was in her crib in her own room from night one, unless Grammy was here, then she was in her bassinet next to her.
Even now, they're in the room next to mine, maybe 10 feet through a wall from my bed to theirs, and I still often can't sleep because of the noises. WITH a sound machine on to dampen the sounds. Frustrating!
Thursday, October 13, 2011
It’s been a long day. Check out my Twitter page if you want to see more details. Lots of tweets today. That’s a rarity, but it was one of those days.
Early morning walk in the dark. Cleaning job after dropping girls at Parents Day Out “Thursday school.” Naps. Dinner. Concert. Late night blogging.
Very tired. But a good day. If only the Cards had won…
Be sure to see Braska’s school pics if you missed that one… kinda cute.
Wednesday, October 12, 2011
Kinlee is so interested in learning, just like her sister. (Letters, numbers, shapes, colors, and many sight words…these were all favorites and she had them down before she was 2.) The difference is that it comes SO much easier to Kinlee than Braska. Because we work on these things a lot for Braska’s sake, KiKi has become as interested in the constant “teachyness” of how we do most all activities.
So here she is, at 32 months. One of her favorite activities recently is for someone to write her a story about our family or what’s going to happen that day. Then she reads it. That’s it. She loves to read. And *finally* (ha! at 2 1/2?)) she’s able to do it largely herself at the “easy reader” level. This is one I just jotted down while we were making our grocery list this morning, and this is not after rehearsal and repeated practice.
We’re proud. No doubt. I hope her interest in all things learning and educational will continue…as long as her fashion sense doesn’t suffer. tee hee
Tuesday, October 11, 2011
Braska went to school. KiKi went to her “school.” (Parents’ Day Out at a nearby church. She LOVES it.) I got a lot done at home. That feels nice.
Meltdowns during backyard play. No naps during naptime. Sometimes they just don’t listen. That doesn’t feel nice.
Dinner all at the table together. Talking about the day. KiKi sharing all about how school went, who she played with, what snack was, what her craft was, when she can go back again. That feels nice.
Visit with friends tonight, one couple who was watching the girls while we visited another couple with a new little man with DS. Adorable. That feels SO nice.
Home and battling sleepy girls, dramatic 2-year-old, flailing, yelling, and flopping. That doesn’t feel nice.
It was a full day, but not bad. Now it’s bedtime. Sleep will be here in minutes. That will feel the nicest.
Monday, October 10, 2011
Part 1 and 2 if you’d like to get the full story…
Ok, we’re working through the Present Level, ready.
~Nebraska has improved with looking when her name is called and responding to requests, when wait time [is] provided and cues [are] given for support.
~She is doing better coming in from the playground with her friends this year. Several of her peers act as buddies to hold her hand and assist in the transition. She really likes to have her friends near and is building friendships. She can name most of her friends.
~Braska’s attention has improved in the classroom. She is able to sit on the floor with the whole class and attend and participate with a few cues given during a 10-minute lesson. Sometimes body will needs to be repositioned due to her focus being on her friends instead of the teacher reading the book or presenting the lesson.
~Braska is having success answering yes/no questions with a verbal response. She has more success answering questions correctly during natural, play settings. During structured tasks, Braska often pretends being “silly” and gives incorrect responses.
~Braska has made great progress identifying functions of objects from a field of four (ex: Find the one you use to eat? to draw?), demonstrating increased receptive (understanding) language skills. She is able to answer some object function questions expressively by labeling what to do with certain items.
~Braska uses the present progressive verb form (verb+ing) to answer many what doing questions (ex: running, jumping). She answers these questions with minimal cueing in the classroom.
~She uses language most often when commenting on classroom activities/happenings or refusing (ex: No thanks.)
~Braska is beginning to independently sort pictures of boys/girls. She has more success when shown faces (versus) full body photos of boys and girls.
There are so many parts of this that I could comment on so far… that’ll be for next time. Questions about anything in the PL?
Sunday, October 9, 2011
These stories come up occasionally… and people seem to have different perspectives on them. So I thought I’d invite discussion here.
Saturday, October 8, 2011
Part 1 is here if you missed it…
So there we are all sitting around the table, and it’s time for the rest of the Present Level, broken down into the therapy areas. Some tidbits…not a complete list.
~ Braska demonstrates overall improvement with her gait speed in a one on one setting. She is able to fast walk 30 ft or greater both independently and with hand held with few to no dropping episodes. This (dropping) has decreased significantly.
~Nebraska demonstrates improvement with stair skills. She is able to ascend with alternating feet with one hand on the handrail when given verbal cues to do so. This is not yet consistent but she continues to show improvement with frequency.
~Braska has difficulty with trunk rotation activities and will frequently place her hand down on the surface for support or compensate by turning into a side sit to avoid completing the movement.
~Some jumping skills are emerging but not consistent. She is able to jump forward 2-4” with two foot take off and landing and has been able to jump over hoop placed on floor with a two foot take off and landing.
Fine Motor and Sensory
~Braska uses a right three-fingered static grasp on short writing tools.
~Braska recently began squeezing tongs to pick up small objects. This is a new skill and Braska continues to refine this skill.
~During bilateral cutting activities, Braska uses loop or self-opening scissors. She repeats the ‘scissor placement song’ but often will need hand-over-hand assistance to place scissors on her right hand and stabilize the paper. Once positioned and with physical assistance, Braska can snip paper. This skill is emerging.
~She is hesitant when working with wet/messy tactile materials (i.e., paint, shaving cream, play dough, and putty).
~Can rote count to 20
~Can identify and name her upper and lower case letters
~Is identifying basic concepts
~She has greatly improved in her attention and participation with minimal cues.
~She recognizes her name in print and several of her small class day friends’ names as well.
(Not included but noted to be added by her teacher… Can identify more close to 100 sight words, as has been observed at school. Not sure of the exact number she knows.)
~Braska is better able to care for her arrival duties this school year with the use of verbal cues to put her backpack away, get her nametag, pick her job, and wash her hands.
~Braska needs assistance with getting clothing and coats off and on. She struggles with these tasks due to balance and coordination. She has been assisting with pulling up her pants at bathroom time, but needs help getting them past her bottom in the back.
~Braska is drinking 1-4 ounces of liquid at a time from an open or lidded, spouted cup. Her total intake per day of fluids taken in these ways is a minimum of 20.
~Braska needs assistance during hand washing time. If left unattended to care for this duty on her own, she will play in the water and soap. She likes to put the soap bubbles on her face and eat the bubbles. She needs to be reminded the steps of hand washing and assisted with properly drying her hands.
We’ll start with Social/Emotional/Behavioral next!
Friday, October 7, 2011
IEPs can be scary. Some people dread them. Some people just ignore them. (I’ve been shocked at the stories I’ve heard at our school and in our area about parents who don’t even attend, or who just sit and listen and say, “Whatever” in a non-caring way.)
I don’t dread them or ignore them. I view them as an important part of the process of educating Braska and getting the best services for her that we can.
There are a lot of parts of the IEP, and this isn’t really meant to be a technical lesson on that process. Though if you have questions, don’t hesitate to ask… I may just refer you to pros in your area. There are great training organizations out there who can equip you very well. Around here that’s MPACT, and I’ve been to several of their workshops.
But feel free to chime in with experiences or tips or your favorite parts of the process!
The first part of the meeting is always the most important part: FOOD! I never show up to an IEP meeting of any kind without some kind of goodies. If in a hurry, it could be M&Ms or trail mix, but I generally bake, since my meetings are usually at 9am. I’ve done coffee cake, donuts, cinnamon rolls, pumpkin bread, and others. Sometimes I’ve even taken little pairs of wrapped cookies so they can take and have after lunch, too. Some meetings I’ve taken drinks, others I’ve skipped that part.
This time, with sick tots the days leading up to the meeting, I went the easy route… Great Harvest Bread Company and QT. I picked up a couple kinds of fall breads, Cranberry Almond and Cinnamon Chip, as well as some blueberry cream cheese scones. Then I hit QT on the way and got 4 large cappuccinos in different flavors, with extra cups so we could share them. These are always a hit!
All in all, super easy, not expensive, and the impact is huge. These team members do a lot of IEP meetings, they work with kids all day, and to sit in a meeting with something yummy to nibble on and a pick-me-up drink is a treat to them. They are always excited, even though my team knows there will be goodies before they get there. Julie and I have developed a bit of a reputation at our school. And we’re trying to teach the other parents we come in contact with how big a difference this can make to the comfortable feeling in the room. It puts everyone at ease and makes the whole process less business and more conversation, which tends to benefit all involved.
Once the food is all arranged and people are settled in, we generally start with the Present Level element. This just states where Braska is currently in a variety of categories. I like that they start with her strengths, then talk about her areas of weakness (none of which are a surprise, of course) and then we go over each of her therapy areas to talk about her current abilities.
Some snippets from Braska’s Present Level:
~Letter and number recognition.
~Sight word identification
~Happy and enjoys being around peers and teachers
~Greets adults by name
~Easily adapts to changes in her day
~Difficulty in visual motor interferes with task completion and fine motor skill development.
~Delays in sensory processing, motor planning, and self-help skills interfere with Nebraska’s feeding and drinking tasks during snack time.
~Decreased receptive language skills affect her ability to follow directions with 2 or more components.
I’ll continue with more of the Present Level next…
What’s your IEP experience? Good? Bad? Dreading the next one? Why?
Thursday, October 6, 2011
Ellen Stumbo: I want to know more about that gathering you have! What is it? What is it called? Where did it happen? Why?
Well, Ellen, plan to be here in town next year Sept 28 and 29!! This event is a women’s conference our church puts on each year in the fall. This year we had women from 14 states attend!! It’s a great weekend, Fri evening and Saturday. It’s called Daybreak Women’s Conference, and here’s a link to this years website. We were blessed to have Lysa TerKeurst from Proverbs 31 Ministries as this year’s speaker and Laura Story, known currently for “Blessings,” as the featured leaders for this year. Next year will bring Vicki Courtney as the main session speaker.
ch: Okay, Queen of all things organized and documented...Pudge's 1st IEP is Monday...feel free to shower me in begged for advice.
Alright, my friend…deluded as you may be to think I’m organized… #1 rule of IEPs as far as I’m concerned—Go in with goodies in hand. Baked goods are best, candies or trail mix to munch on can work too. Something that sets you apart as a parent who thinks that this event of the IEP meeting is to be dealt with both gratefully (because we are blessed to have the access to extra help for our kiddos…sometimes I think we forget that) and somewhat touched with the comfortable. In other words, often IEP meetings are stressful, though mine have not ever been that way honestly, and starting off by brightening the day of the team you have by thinking of them enough to bring something they weren’t expecting… let’s just say it goes far. I’ll address this a little more in an upcoming post about Braska’s IEP today.
Otherwise, dearest Cotes-a-licious, you’re all over this, I think. Be aware of what your kids strengths are, and take a printed page listing them, elaborating however you like, to share with each member of the team. Many times, if the team has not come to know your kiddo yet, take a pic in a frame, or a collage, so that the face is there with them as the meeting goes on. More than a name or just list of delays…we want our kids to be kids, cute faces to go with the diagnosis, minutes of therapy, and accommodations. I have a binder with my IEP stuff in it (though I took the wrong one today) that has a printed digiscrap collage on the cover so she is always there smiling at us.
Because our kids will always perform better at home or with familiar people than at school, at least in my experience, I like to write out a “present level” from my perspective. A run-down of the strengths that Braska has right now, the things she is struggling with, the things she loves to do, and the things I want her to be focusing on in this next year. I print it and have copies for each team member. It gets placed with her IEP as my contribution to the Present Level section of the document.
There’s lots more stuff about laws and least restrictive environment, etc. There’s plenty of things to read and know about, and I can share more about those, but I’m very thankful that we’re in a school who is up on these things, ready to do what’s best for Braska at each juncture, and I have been able to truly trust that they’ll always provide the best care and education. And so far, they have done just that.
More on IEPs soon!
Wednesday, October 5, 2011
Tomorrow I will be there, ready for a smooth day because we have a great team. But the baked goodies will not be made by me. Purchased from quality bakers though. That’s still gonna count, right?
So if you have any questions about IEPs in general or Braska’s specifically, feel free to ask. I’ll update afterward.
Tuesday, October 4, 2011
Quick update for those who have been emailing/texting about KiKi…
I called the Dr. today to check in and let them know her temps and such, expecting for them to tell me to call back in a few days if it wasn’t better or something. But they wanted to see her an hour later. So in we went.
By the way… if ever you come here and there’s not an update in these situations, feel free to check my Twitter feed over in the right margin, or follow me on Twitter. Sometimes that’s just way easier to shoot out a quick info bit. Just sayin’.
Dr. A saw her and agreed she looked pretty pathetic. Her temp was 101 when she got up this morning and she seemed to feel ok, but then through the morning the temp went up and her demeanor went down. She said a few times that her ear hurt, and then said she had “a leg ache” in both legs a couple times as well.
I have learned that I never go to our pediatrician’s office without our thermometer with me. (I’d take a digital scale too if I had one or could carry it… really.) So I showed on the memory read-out on the thermometer what she had registered out in the waiting room. 102.8. But when she used the one in the room, the stick kind that’s meant for oral but they use axillary, it read 98.5. Nice. Hence my taking my own to make sure we get a proper reading. I showed the MA what it read on ours just then, 103.1 at that point, and she made a note of that. When Dr. A came in, she went back to find their temporal thermometer, and once they found it, it read 103.4. So I was glad, as I have been several times, that I come with my own. I first took it to verify that I was on with their “official” thermometer, so I knew I’d have correct info at home. But it just served to show how inadequate their in-room unit was. That’s ok too.
There’s your little tip for the day… if in doubt, bring your own along.
Anyway, after a strep test and urine test, all is clear except for dehydration indicators. KiKi is not a big fluids girl on a good day, and today I’m thinking she may have had about 6 oz all day. And that was with heavy pushing and pleading. Not enough. She hardly ate a thing, too. We need that to improve quickly.
Tonight she’s in bed, after asking oh-so-politely to be put to bed. She was at about 102.1 when she went to bed on a fresh dose of acetaminophen. I’ll check on her in the night again.
I’ve been feeling like I am trying to fend off a cold for a couple days, and my energy is sapped. All things considered, we’re a mess over here. But we’re surviving and praying that it’s all done soon.
Braska is scheduled for eye surgery and dental work under anesthesia on 10/19…so we MUST keep her well. Prayers appreciated.
Monday, October 3, 2011
This little tot didn’t feel well this morning.
This little tot was whiny…which isn’t necessarily uncommon.
This little tot woke from nap ok but flopped around on the couch for a while.
This little tot fought off a temperature check. For a minute.
This little tot had 102.7 temperature.
This little tot reluctantly took in some applesauce with ibuprofen mixed in.
This little tot told her daddy, “I am going to have vomit in my mouth.” He asked if she did have some already, and she said no. “I am going to have vomit in my mouth in a minute.”
This little tot then chose to share that ingested applesauce with her daddy just a bit later, before sufficient containers could be arranged.
This little tot chose the right parent for that exchange.
This little tot then seemed to feel much better. Perking up a bit. She did say her ear hurt at one point.
This little tot and her 101.6 temperature just went to bed, per her request. Little heart racing and starting to shiver. We did force Tylenol before bed. She didn’t approve.
Poor little tot.
The girls both know the entire fight song for the Chicago Bears. Every word, though they might not know what they all mean. (T-formation??) We sing it often, and the request it in the car many days on the way to school. Give us time, they’ll be pros and experts on all things football before ya know it.
Rach caught this today, after the girls had performed the entire song with me spontaneously but we hadn’t captured it on video. I still hope to get them to do the whole thing… it’s darn adorable. Anyone out there from the Bears organization?? Comp us some great suite tix and we’ll bring this action to you live!
Until then, here’s a snippet.
If you want to see still pics of the day, Braska’s got you covered over there.
Saturday, October 1, 2011
Because my daughter has Down syndrome, I’ve met a lot of great people.
Because my daughter has Down syndrome, I’ve come to this city.
Because my daughter has Down syndrome, we are a part of a great school.
Because my daughter has Down syndrome, I’ve been given reason to be on a superb team of support in our community.
Today all these elements came together. Today I sat with two groups of ladies whose lives connect through my tiny little girl and enjoyed fellowship in the midst of hundreds of women. But none of these special ladies would be in my circles at all if it were not for my daughter, who has Down syndrome.
How blessed I am to have this phenomenal group of women around me.
How blessed I am to have Braska’s team at school be full of those who are also excited to praise God alongside me, learn about how to be more faithful and in tune with His plan, and determined to allow that faith to make them better parents, teachers, therapists, and friends.
How blessed I am…so much so because my daughter has Down syndrome.
Grab This Button
Can’t believe it’s October. Birthday month. DS month. World Series. Football. Fall weather. All good stuff.
But wow, has the time just flown by at warp speed or what??
Not sure who all is still out there, but if you are and you want to know something, DS or not, silly or serious… throw it out here and I’ll give it a go. Rarely is a question asked that I can’t formulate a wordy answer. No shock there.
Today I’m spending the day with friends that I would not have known had Down syndrome not been part of the plan. We’re not gathering for Down syndrome. We’re gathering to share and enjoy hundreds of other Christian women gathered together to worship, learn, chat, and laugh. The fact that my two worlds collide in this way is no small thing, and no accident, in my opinion. I am so very blessed to have this group around me.