Watching the snow

When I got up this morning, I found Braska sitting by the back door corner. (Three doors in not enough space.) It kind of acts as our mud room for drying snowy dog feet and leaving snowy people shoes. During wet or snowy times, it's not a place we sit or stay.

But Braska circumvented the hall gate (really only meant to slow her down and cause enough noise for me to hear the girls getting up) found flashcards she loves, and apparently decided a seat with a view to the snow falling in the back yard was her pick.

When she looked up to see me, the remorse was obvious. Or her nose was itchy. Judgement call.

RK: Test run for new format.

I've debated this many times before. Using the blog kinda like I use instagram or twitter... Quick and to the point. Heaven knows I'd love to write a lot, but suffice it to say that is not gonna magically happen (consistently) ny time soon.
So maybe this will be better than nothing? Maybe not. Maybe no one even does blogs anymore...  I've debated caving in for fb to... But haven't yet. Hard to make changes,  ya know.
In the meantime... Test pic is me and my girl, as she sits with me in my "work space" aka recliner with laptop.

Cutest of us

I tell her she’s the cutest Kinlee. She loves to tell me how cute I am, all mushy and sweet like…  we’re gooey like that. (When she’s not being one of the most frustrating little 4-year-olds I know…)  So I do appreciate the sweet times.  Together, we’re the cutest.

Things I could write about

I want to go to bed. It’s late. But I don’t want to forget the list of things in my head that, in an ideal schedule, would be able to be mulled over via blogging… today was a full day.

~Braska was off school, Kinlee “on” school, stayed for chapel with Braska at “the other school” to see her buddies.

~Dashed from chapel to Braska’s parent/teacher conference. It lasted 2 hours. Not bad, but not fully happy. Topics: reg ed time, transitions, behaviors, motivation

~Then ran back across the county to “the other school” to help with lunch and let B enjoy some more time with her friends at lunch and recess.

~Left from there to get downtown to Children’s for newest specialist on B’s team… urology. Trying to rule out medical issues for toilet training frustration. Ruled a few in. Topics: nonemptying bladder, wrong messages between bladder and brain, can be corrected and quick (per dr).

~Straight back to pick up K from Spanish, stopped by physical therapy location with one of very few PTs who works on what B needs help with.  Went by pharmacy for new med.

~Finally made it home to fix dinner and brief M on the happenings of the day and our new list of homework.

More on these later….good night.

31 for 21: 7th year

Grab This Button

Mommy reporting: The brainchild of my friend Tricia (whose writing I do so miss… in case she happens by), 31 for 21 is now in it’s 7th round.  Hard to believe.  Tricia has handed off the hosting duty to another friend, Michelle, who is doing a marvelous job, as she always does.

October is Down syndrome awareness month, and I’m guessing since this blog has all but lost it’s previous flow of readers (I blame Faceb**k but it’s more likely the long breaks I’ve taken, in fairness), those of you who are here are probably well aware of how 31 for 21 works.  If you click the button—which I’m proud to say I created for Tricia a few years ago, per her design requests—it’ll take you to the more formal explanation.

Anyway, the idea is that I try to post every day in October.  It might not be much.  Which is sad because there is SO much DS related-ish stuff I could write about. But I’m living it, and it’s leaving little room for writing about it.

I’ll do my best.  It’s all about this tiny girl…

Mommy Kinlee Salon Day

Kinlee likes to give things names. Events. Situations. Lots of things.

If we go to lunch, it’s Mommy Kinlee Lunch.

If Braska’s with us, it’s a Mommy Girls Lunch.

When she wants to sit on my lap for a while, she asks for a Mommy Kinlee Moment.

If Daddy takes her to Lowe’s,  it’s a Daddy Kinlee Trip.

When we went to Wal Mart this morning, it was an All Family Trip.

And the list goes on…

Today was Mommy Kinlee Salon Day. 

I was going to get my hair done, and she came along because she wanted a cut for herself, too.

I got to go first because she can get her haircut done during my processing. So she waited patiently (with Netflix on her Nabi, of course) in the chair next to mine.

When it was her turn, she was all smiles.  (Which is nice.  We tend to see A LOT of attitude lately, more than smiles.)

My big-girl 4-year-old bug.  My kindergartener.  Hard to believe.

She is like a little pro when she’s in there. Loves it.  She really likes the whole process, except the shampooing.  The super chic sinks there aren’t the most comfy for her, so she prefers just a spray to wet it down.  And she knows. She’ll speak up and let you know what’s supposed to happen.

She gets very serious about watching everything that Jessica is doing, but she does sometimes crack a smile.

Of course, we had to pause to pose together. 

The after…  she prefers no blow dry, thank you.  It’s far too hot for her liking.

Her couple inches of trim was pretty uneventful, but the other 90 minutes when she was just waiting for me was the real challenge.  And she did great, not the recently-typical whining, none of the rolling eyes and attitude-laden tone.  She was pleased to do her Fooz Kids Math or English on the Nabi or watch Martha Speaks.

It was a pretty nice outing.  And that’s a good thing.  So since it’s not always the way things go, I wanted to document it.  So I can look back next time I get the growl and scoff along with the “Oh my goodness, Mom.  That is not at all what I want to do. Can we talk about other options?”

No joke.  Verbatim quote.

I’m glad to have these little peeks at the fun 4-year-old days.

Kinlee’s Pumpkin Plant

Toward the end of school last year, Kinlee came home from school with a tiny egg carton cup with a sprout in it. It was a pumpkin plant just starting.

Since I kill just about every plant of which I have had custody, we took it directly to Grandma C’s house.  They planted it in the back yard.

In about 4-6 weeks, it was a full-blown plant, and it had the first flower.

In July, the plant continued to grow. It was pretty amazing to see it get bigger so quickly.  Several flowers came and went, but finally we saw the first little pumpkin.



The plant was bigger than Kinlee in no time.


The pumpkin kept growing. And by early August, though still green, it was getting to look like a “real pumpkin.” 


As every good gardener should, Kinlee watered her plant when playing at Grandma C’s.  It’s turning orange, and that pleased her.  But do you see the size of that thing.  ALL of that green that’s below Kinlee’s shoulder height is that one little sprout of a plant grown BIG.


It’s neat to watch this grow.  It’s neat to think of the symbolism of the seed that was  planted, the sprout that was cared for and then re-planted in the right place, and the way that a little sprout put in the right environment can thrive more quickly than I can imagine. 

It’s a lot like the little sprout that brought that sprout home.  And we’re thankful for people like Mrs. S, who helped her plant that pumpkin seed while at school last year, and contributed to the planting of innumerable seeds of potential.

Adorable Besties

Two pretty little 4-year-olds.  I cannot wait to see these girls in 10 years, hopefully still close friends!

Somewhere there may exist a pic of Ella’s mom and I, from 25 years ago when we were teens…  or maybe not since there weren’t digital cameras back in the old days.  But it’s fun to see our kids hang out together now.  What a neat life circle to bring our families to the same neighborhood, church, and life group.

That's my van

With my kid in it. And my keys in it. And its locked. I'm waiting inside the building so that Kinlee doesn't know there's a problem. She might get dramatic.

I managed 2 dropoffs at 2 schools today,  both followed by successful child retrieval at the appointed times. But on drop number #3 at school #3 (for therapy) I changed my mind mid stream and uh oh...  Buckled child and keys locked in car.

Thankfully its great weather and she is blissfully ignorant of the issue. Playing with her Nabi and happy as a clam. I'm staying clear but in view so I can see when Daddy arrives.

Might be time to lighten up the schedule...  Good thing spring break of 10 days starts now.

And Daddy's here. Hooray.

Simulpost: What? A post? Don’t pass out…

I know I’ve been MIA. I know that my readership is basically nil. But I know there are a few of you who may still happen by.

So in this moment, as I sit at McD’s after a very healthy and balanced lunch, I’ll pause to post instead of logging in to work for a few minutes.  Don’t you feel special? 

Wait. Maybe you want to wait til after you see what overly-awesome and super-interesting things I have to share first.  Then you can be the judge of it all.

Why am I at McD’s? Good question. It’s not a place you find me often at all. But it’s close to both of the schools where my girls are this afternoon, and I didn’t have a long period to go do something involved, so lunch and some quick internet time was about what fit.

Both schools? And in the afternoon? Don’t they go to the same school and isn’t it half-day for mornings?  Well, let me back up a bit.  We’ll see if I can get it explained in the few minutes I have left. 

Oops… Happy Valentines Day.  Didn’t want to miss that. I am thankful for all my online valentines.

Now, the backstory. Over Christmas break we started the process of “dual enrollment” for Braska, so she could attend an elementary school in our local district in the afternoon while continuing to go to her half-day kindergarten in the mornings.  The process has been beautifully smooth. We are really blessed, I admit.  The team at C School is wonderful, they basically let me set up her schedule exactly like I wanted, and I’m really pleased.  We’re doing this just to boost her in the areas she’s struggling with. And so we can get some additional therapies as well.  We’ve been on our own with therapies since August, and much of that time she’s had none.  She’s doing GREAT at LWCS, but some concepts are hard for her (math!!), so this is what I thought might give her some help.

She’s just going to be in special ed in the afternoons. There’s 5 boys in there. That’s the whole class. She’ll love that!  She’s a fan of boys, especially since one of her faves is in there, too.  She’ll go to specials (art, music, etc) IF she doesn’t need to have a therapy during that time.  My priorities are academic instruction and therapies.  I don’t worry any about inclusion in that environment because she’s with her gen ed class all morning and she does specials then.  I like that it’s a lot like tutoring in the afternoons, with therapy thrown in. What’s not to like, if you ask me!  She’ll go Tues, Weds, Thurs for the afternoons. We’ve moved her private OT, ST, and PT to Monday afternoons or Friday afternoon.  (Plus, of course, cheer on Sun and Mon evenings, swim on Friday evenings. Cheer competitions on Sat or Sun once or twice a month and Learning Program on Saturday once a month, too. So she’s all booked up.)

So today is Braska’s first day of attending C School in the afternoon, going directly from pick-up at LWCS to C School. 

This morning I took both girls to school at LWCS where they both go 5 half-days each week.  They love it. I love it.  It’s awesome. Period.  Can’t even tell you how much I love that place.  I dropped them off at 8. Should have gone to work for a couple hours, but decided (with my boss’s permission) to forego trying to get out there, set up, work for maybe 45 minutes, then tear down and leave again to get back for the Valentine’s parties in both girls’ rooms.  So I went to WM to get pink icing, my contribution to Braska’s party, per assignment.  I also picked up a precious pot of tulips for B’s teacher and a little mini-rosebush for K’s teacher.  And a super neat bright bouquet for the office staff/principal.

Got back to school in time to deliver each of the florals, then off to set up for B’s party.  Then bounce across to K’s party a couple doors down and around the corner.  And back and forth. Repeat.  Both girls had a great time. We packed everything up and headed out at dismissal. Drove across town to F School and dropped Kinlee.

F School is a local church preschool/parent’s day out program that she went to occasionally last year.  We like the people there a lot.  So nice.  And since Braska “gets to go” to a second school, Kinlee decided she wanted to as well.  She got some money for her birthday last weekend, and this is what she likes to use it for.  Win-win.

So we dropped Kinlee and her lunch box right in time for lunch with her friends.  And in time for the second Valentine’s party of the day.  She’ll be there til I get her on the way home from Braska’s pick-up.

Then it was on to C School. I fed B in the car (lucky for me she loves greek yogurt. woo.) and in she went. Her buddy Jack is in her class at C School, and it was so funny to see him look up and see her walk in. Totally like, “Huh? What are YOU doing here?” She went right to the bead toys and activities and didn’t even look back to see where I was. 

So I came to McDonald’s to spend an hour eating some lunch and waiting til time to return to Braska’s class Valentine’s Day party in a few minutes. 

All fits just perfectly, right?!?

Tonight, I may collapse. But then again, this kind of day is more the norm than a rarity lately.  I drive almost 100 miles a day often, and that’s not even leaving the county.  Most of that is east and west and east and west on 70.  Thankfully, most everything is right off of the interstate, which makes it easy. Just repetitive.

We’re going to get Daddy’s favorite pizza for dinner, watch Beauty and the Beast with the girls (their first time!) and head to bed early.  Sounds like a lovely Valentine’s evening. 

Time to head to the 3rd party of the day… hugs to all your valentines!

Mommy Simulpost: What? A post? Don’t pass out…

I know I’ve been MIA. I know that my readership is basically nil. But I know there are a few of you who may still happen by.

So in this moment, as I sit at McD’s after a very healthy and balanced lunch, I’ll pause to post instead of logging in to work for a few minutes.  Don’t you feel special? 

Wait. Maybe you want to wait til after you see what overly-awesome and super-interesting things I have to share first.  Then you can be the judge of it all.

Why am I at McD’s? Good question. It’s not a place you find me often at all. But it’s close to both of the schools where my girls are this afternoon, and I didn’t have a long period to go do something involved, so lunch and some quick internet time was about what fit.

Both schools? And in the afternoon? Don’t they go to the same school and isn’t it half-day for mornings?  Well, let me back up a bit.  We’ll see if I can get it explained in the few minutes I have left. 

Oops… Happy Valentines Day.  Didn’t want to miss that. I am thankful for all my online valentines.

Now, the backstory. Over Christmas break we started the process of “dual enrollment” for Braska, so she could attend an elementary school in our local district in the afternoon while continuing to go to her half-day kindergarten in the mornings.  The process has been beautifully smooth. We are really blessed, I admit.  The team at C School is wonderful, they basically let me set up her schedule exactly like I wanted, and I’m really pleased.  We’re doing this just to boost her in the areas she’s struggling with. And so we can get some additional therapies as well.  We’ve been on our own with therapies since August, and much of that time she’s had none.  She’s doing GREAT at LWCS, but some concepts are hard for her (math!!), so this is what I thought might give her some help.

She’s just going to be in special ed in the afternoons. There’s 5 boys in there. That’s the whole class. She’ll love that!  She’s a fan of boys, especially since one of her faves is in there, too.  She’ll go to specials (art, music, etc) IF she doesn’t need to have a therapy during that time.  My priorities are academic instruction and therapies.  I don’t worry any about inclusion in that environment because she’s with her gen ed class all morning and she does specials then.  I like that it’s a lot like tutoring in the afternoons, with therapy thrown in. What’s not to like, if you ask me!  She’ll go Tues, Weds, Thurs for the afternoons. We’ve moved her private OT, ST, and PT to Monday afternoons or Friday afternoon.  (Plus, of course, cheer on Sun and Mon evenings, swim on Friday evenings. Cheer competitions on Sat or Sun once or twice a month and Learning Program on Saturday once a month, too. So she’s all booked up.)

So today is Braska’s first day of attending C School in the afternoon, going directly from pick-up at LWCS to C School. 

This morning I took both girls to school at LWCS where they both go 5 half-days each week.  They love it. I love it.  It’s awesome. Period.  Can’t even tell you how much I love that place.  I dropped them off at 8. Should have gone to work for a couple hours, but decided (with my boss’s permission) to forego trying to get out there, set up, work for maybe 45 minutes, then tear down and leave again to get back for the Valentine’s parties in both girls’ rooms.  So I went to WM to get pink icing, my contribution to Braska’s party, per assignment.  I also picked up a precious pot of tulips for B’s teacher and a little mini-rosebush for K’s teacher.  And a super neat bright bouquet for the office staff/principal.

Got back to school in time to deliver each of the florals, then off to set up for B’s party.  Then bounce across to K’s party a couple doors down and around the corner.  And back and forth. Repeat.  Both girls had a great time. We packed everything up and headed out at dismissal. Drove across town to F School and dropped Kinlee.

F School is a local church preschool/parent’s day out program that she went to occasionally last year.  We like the people there a lot.  So nice.  And since Braska “gets to go” to a second school, Kinlee decided she wanted to as well.  She got some money for her birthday last weekend, and this is what she likes to use it for.  Win-win.

So we dropped Kinlee and her lunch box right in time for lunch with her friends.  And in time for the second Valentine’s party of the day.  She’ll be there til I get her on the way home from Braska’s pick-up.

Then it was on to C School. I fed B in the car (lucky for me she loves greek yogurt. woo.) and in she went. Her buddy Jack is in her class at C School, and it was so funny to see him look up and see her walk in. Totally like, “Huh? What are YOU doing here?” She went right to the bead toys and activities and didn’t even look back to see where I was. 

So I came to McDonald’s to spend an hour eating some lunch and waiting til time to return to Braska’s class Valentine’s Day party in a few minutes. 

All fits just perfectly, right?!?

Tonight, I may collapse. But then again, this kind of day is more the norm than a rarity lately.  I drive almost 100 miles a day often, and that’s not even leaving the county.  Most of that is east and west and east and west on 70.  Thankfully, most everything is right off of the interstate, which makes it easy. Just repetitive.

We’re going to get Daddy’s favorite pizza for dinner, watch Beauty and the Beast with the girls (their first time!) and head to bed early.  Sounds like a lovely Valentine’s evening. 

Time to head to the 3rd party of the day… hugs to all your valentines!

Longest in a long time

 

Braska had some kind of weird night. It started yesterday afternoon.  She napped ok at Auntie Rachel’s while I was taking care of some things there.  Then she woke and seemed “off” or not herself.  She had a GREAT day at school yesterday, by all accounts, doing really well with feeding therapy (yay!) and classroom.

We came home about 6 p.m. and she spent the evening very agitated. She didn’t want anything we offered. She acted exceptionally fidgety and had the sad, pouty face a lot.  She would flop on the floor, roll around and whine, then get up and take a few steps before flopping again.  When we would try to hold her, she’d squirm and then slide down off our laps. Everything we asked her about received a “No, not yet,” response with a very pathetic tone.  A few times she was knocking her head against the cabinet in the kitchen while I was there, and then the stove.  She only did this a few times, but I didn’t care for it one bit.

At one point, I was able to distract her with the sight words flashcards that she loves, and she seemed to kind of normalize for a few minutes, but then she returned to the highly agitated state.  She didn’t seem to be in pain, per se, but she was clearly very uncomfortable. 

We tried to put her to bed, but she thrashed around in her bed and would not settle down.  She didn’t cry, but grunted, sort of.  She didn’t grind her teeth, which I found odd, because that is almost constant when she’s tired and not feeling well. After about two hours, I got her up and rocked her, thinking I could help her calm down.  She went to sleep after I had held her pretty snugly and fought her fidgets.  (We do occasionally have to do this, hold her tightly and kind of assist her with turning off for the evening.  I’m sure it’s a sensory thing as well, but it’s usually easily dealt with and over for the night.) She gave up and went to sleep, but as soon as I laid her down, she was awake and upset again.  This happened several times. 

I took her into to my bed, thinking I could lay with her next to me and hold her tight to go to sleep, then she could just stay there instead of being moved.  Unfortunately, that means I do not sleep.  Even when she is sleeping well.  I just hear every breath and sound and wake with all of them.

But she did not sleep well even in our bed.  I tried every kind of pressure on her, including wedging her between me and a very heavy feather pillow.  It was clearly a sensory issue, in my opinion. It was like she could not stand being in her own skin.  She just could not get a moment’s reprieve from whatever was bothering her.  She would sleep for about 15 minutes, and then wake thrashing again for the next 30.  Then more sleep for 15 minutes, and on and on it went.  We even gave her a small dose of melatonin and it did not help one bit.

Several times I tried to take her pulse to see if her heart was racing.  But I literally couldn’t get her to be still long enough to get it.  Her respirations were definitely faster than usual, but not rough or labored.  It was really bizarre. And it just kept on.

I curled up at the end of my side of the bed and tried to sleep, but it just wasn’t gonna happen.  I did get a few little spots of 15 or 30 minutes at a time…not nearly enough.

About 3 a.m., I changed her diaper while she was thrashing and already awake.  (She’s been overflowing diapers at night lately…can’t have that in our bed!) She went back to sleep after some more tight rocking, but it only lasted about 30 minutes. 

She slept a little longer with shorter bouts of agitation as the morning went on.  And when M got up at 6 a.m. to get ready for work, I slipped into his side of the bed to try to sleep.  She woke about 7:30 a.m. and seems ok.  I can’t imagine how that’s possible.  I’m debating whether or not to take her to school.  Can she possibly be worth anything with so little real sleep? 

I feel completely run over.  And it’s a busy day full of must-do items.  I actually have a scared feeling when I consider getting through the whole day.  Strange.

And it bothers me that I have no idea what was going on.   What in the world would cause a reaction like that?  She had no red dye yesterday, which is slightly like what I would have expected with this reaction.  But it’s still different.  I just don’t know what it was.  And it honestly makes me afraid that it will happen again. 

I hope it was a strange one-time occurrence.

Anyone have any thoughts??

A day in the life: Blown button, new job

Done with…

• Early morning private OT session, sensory-focused, for Braska. Had to use or lose flex spending money from M’s soon-to-be-in-4-hours-FORMER-job, so we get a few weeks to see how it goes. I’d love to document this stuff and the reasons behind it so much better for myself and others… but alas…
• Picked up Kidlet, little snoozalicious.
• Girls’ Playtime while I got Braska’s meals for the next several days ready to go. Oh how I love a quality stick/immersion/hand blender. Pulse, Pulse, Pulse, Done.
• Kinlee declined lunch and wanted to go to nap. Not that uncommon. Kidlet went down about the same time.
• Don’t forget plenty of diaper changes all around and various feeding.

But then…
As I was preparing to give Braska her mid-day milk, via tube, I sat her on my lap and something was weird. Missing. The belly terrain was too smooth.
*eye roll, sigh, then hunt for the button*

It was found quickly, near the chair where she had been sitting…probably fell out when she climbed up.

Ever seen a Mic-Key Button with a blown balloon??


Pleasant huh?

In case you’re not familiar but curious, the part on the right of the above picture is the balloon, which is supposed to be inside the stomach, inflated with water once it’s in by the port on the lower left side. I always describe it kind of like an earring. Except you don’t inflate the earring post behind your ear. The tube connects to the port on the left side, when the little flap is opened.

Hmmm…that might be interesting though. The inflatable earring thing... Maybe later I’ll ponder that more.

Anyway, after more pushing and effort than I care to experience, and Braska agrees, in order to get the new button in (thank goodness I had one already in the cabinet for backup…I sometimes forget), we’re all set and she’s good to go.

If we ever get rid of that thing, she’s going to be one of those whose stoma just closes in no time when the button’s removed. So that’s good.

Now on to the rest of the day…

• Short appointment for paperwork for the new job. Oh yeah, I didn’t follow up with that did I? I got the job from Saturday’s interview. Working part-time at the Y!!! I’m pretty excited! Evenings, weekends, front desk, you get the picture. The people there are great, from my perspective as a member, so I think it’ll be fun to work with them. Big props to my long-time friend Sarah for the tip and lovely reference!! Now we’ll have the extra income required to pay for medical insurance since M’s new job has astronomically high group benefit costs. We’re going with an individual family plan and it’s far cheaper.
• Potty training seminar tonight, also dealing with elopement, specifically for kids with DS. Should be interesting. (Workshop day tomorrow for practical solutions in educating kids with DS. Both put on by our DSA. Bridget Murphy from the KC DSG is speaking.)

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!

Best option for learning

Well, well, well… it’s been a very interesting couple of days.

Thanks to all of you who have given input on the afternoon school versus nap situation.  I’ve really appreciated all the different perspectives and it’s been good to think through a variety of things.

Before I give you the latest, I’ll answer a couple of questions…

Bedtimes: The girls go to bed between 8 and 8:30p usually closer to the 8:30p mark.  It’s rarely much later than 8:30p unless we’ve been away from home for the evening for some reason. 

One thing to consider regarding bedtimes with Braska is that she is tube fed for the majority of her nutrition, and her intake is limited to the volume she can hold at any one feeding.  We don’t use a pump, so she just gets bolus gravity feeds 4 times a day in addition to whatever she might eat orally.  But she ALWAYS needs a feeding right before bed to get her calories and fluids in for the day.  She simply cannot tolerate all her required amounts in volumes that would allow us to cut the bedtime feeding yet.  And because we have to allow at least 4 hours between feedings in order that she can keep it down, this affects when she can go to bed.  We try to work it out so that her last feeding is at 8pm, but if the schedule gets off at any point in the day due to errands or just life in general, then it can sometimes be a little later.  There’s just not hardly any way to make her last feed before 8pm. The 8am 12n 4pm and 8pm schedule is the one that fits her best.  So we can’t really put her to bed at 7pm, for instance.

I hope that makes sense.  We just have some additional restraints on our routine than most.

School options: I had hoped I could talk with the school, explain our situation with naps, illness, and focus issues in the afternoon, and they would be willing to make some adjustments, but that wasn’t the case. 

So here is where we are right now… according to a representative from her school, she may attend the afternoon class or no class.  I was told that they are not willing to move her to a morning class and that they ARE offering an appropriate option for her.  Clearly, I disagreed and told them so. Politely but firmly. 

I’ve decided that the afternoon class is not an option at all.  After much deliberation and prayer and consulting others in like situations, I’ve decided, and M agrees, that she would gain no benefit from the afternoon class and would only be in a position for negative effects of the change—in reduced sleep, inability to perform well at all during that time period, and increased concern for illness, which has already been excessive since she started in November.

Beyond that decision, I’m still in limbo.  The representative from the school couldn’t offer me any info about where to go next.  I tried to contact the district (our district contracts with this specialized school for Early Childhood Special Education) but I’ve not received a call back. They aren’t in every day at this point, apparently.  I’m guessing I’ll need to reconvene the IEP team for a meeting and set up new placement for itinerant services.  This will mean that we will receive the therapies but no class time.  I’m hopeful that they will not make that difficult to achieve. 

My feeling right now is of disappointment.  It’s not anger, though I’ve been close.  I’m just so disappointed in this school.  We chose to live where we do, precisely where we do, in order to be in the area that utilizes that school for ECSE.  We heard many good things, and we have experienced many good things since we began back when she was 2 and going 1 morning a week.  Almost everyone we’ve dealt with has been wonderful, so helpful, very nice, and I count many of them as friends.  I’m disappointed because we have now had an impasse at a point that doesn’t seem that difficult to resolve.  At least to me.  But I’m just the mom.  I really believed they would be more willing to be INDIVIDUALIZED in their approach.

I kept being told that they can’t “shuffle kids around” (to which I responded that I’m not interested in “kids” I’m interested in my kid—one kid—and at 24 lbs and 3 years old she is not that hard to “shuffle around”) and that the schedules are set and that they have to have SOME classes in the afternoon, and kids will adjust.  Well, of course they will adjust.  But I don’t think I want or need Braska to adjust to this at this moment.  It’s not necessary. She is 3.  If she wants to nap and she needs to nap, then a nap she’ll get!

Braska’s teacher (last year and assigned for the coming year) is great. I’ve talked with her, and she is very understanding, but she’s not in a position to bring about changes in this situation.  I had offered the option to the representative at the school to have Braska be in her teacher’s morning class, the “early 3’s” which is the age that she was with this last year.  She would still be “behind” them, so the peer modeling element would be present.  But nope. No dice.

I could probably raise a real mess at the school and with the district, get letters from everywhere, go right up the chain of command to get her in a morning class.  I’m quite sure I could do it if I wanted to.  But in the last couple of days, I’ve learned I don’t want to. (Though I have considered taking it to the top just to pave a way for some other family who will come after us…but I don’t know if I have that energy right now.)  Braska missed SO much school this past year, and we would most likely be looking at the same thing again, because her habit of having her hands in her mouth so much is still continuing, no matter what intervention we try, and as long as she is doing that, she will continue to get everything that comes into the room.  Why go through all the hassle for this and then just have her miss every other week again?  Why deal with all the illness as it trickles down through all four of us and even causes M to miss work?  It’s not worth that. 

I say this alot—She is 3.  There is time for school.  She will go to school, I have no doubt about that at all.  But all signs show me that it’s not the best choice right now.

So it looks like, at this point, Braska will not be in school this fall. I hope we can work out the itinerant services for therapies, but I won’t send her to school JUST for that if it means compromising on all the rest of my issues.  I’ve talked with the pediatrician about taking a break, and maybe that’s what we’ll do.  Of course, we’ll continue to work on the things we always work on.  

Maybe we’ll only take off the first semester and then revisit the situation.  But for now, that’s where we are.  I am a little nervous, but I’m glad for some clear direction.  She will miss going to school…she really does love it.  But this is for the best, and the BEST learning option, in good health, is what I’m interested in right now.

Wow. What a difference a few days can make…

The germ count

As of right now, we are healthy.  That’s very nice. The girls are well—or as well as Braska can be with what is apparently allergies at this time of year, so still snot persists—and they are nearing their “normal” demeanors again. 

Right at the moment I can’t remember what I’ve updated about on here and what I haven’t and I have very limited time to throw some info up here, so I won’t go hunt it down. If this is a repeat, please pardon me.

Braska is due for tubes in her ears. We learned this at the end of February and were not at all surprised.  Though she made it her first three years of life with not a single ear infection, she had at least 4 in the first 3 months of school, so tubes are in order.  The ENT recommended that we get a sleep study first to see if we would just do tonsils, adenoids, and tubes all in one anesthesia trip. Sounds good to me. The sleep study was at the end of March. (Still no results…grrr. That’s another story. I’m going to be making another in a long string of calls this morning.)

To my chagrin, the ENT either has way too many patients or way too little time scheduled for OR procedures, because suddenly, when we wanted to schedule for a surgery date, they gave us June 2.  Not acceptable.  So we began to check out some options, including restarting with another ENT and still getting the whole process done in less time. But in the nick of time, I was told that there was a cancellation and we could have the slot, the first week of May.  I took it, and we resigned to the fact that we’d have to wait til then for the procedure.

Due to our string of ear infections, strep, hand/foot/mouth disease, and random other fun germies, our pediatrician recommended this week that we keep Braska out of school until her surgery, just to be SURE that we don’t have to postpone due to another little illness.  If we have to reschedule, it would probably be December before we get in, by my calculations.

Therefore, this week I’ve been talking to lots of people at her school, the district coordinator, therapists, etc.  We’re trying to work out a way for her to go to school for therapy only and in environments that we can control as far as exposure/cleanliness.  So I would take her up for therapy services at regular times for the next few weeks.  At this point, we have speech on the calendar, but I’m waiting on the rest.  OT/feeding is my primary concern, since Braska’s been making progress with Sue, so it’s the one I’ll work the hardest for. (Excuse me…for which I’ll work the hardest.   Good grammar can be so formal.)

We’re hanging out at home in the meantime.  The girls are playing fairly well, though they sure do get on each others nerves lately, and mine, and Belle’s, and vice versa in all cases…close quarters we have here, and when we’re all trying to accomplish something different on our personal agendas, it gets heated.  We’ve made a few trips to the library, with limited handling of books.  Braska has asked almost daily to “go school today?” and “fun at Jack’s house!” (She actually says it like that…there’s nothing but fun at Jack’s house apparently!)

For now we’ll take it easy, enjoy the nice weather, though we can’t really use the beloved attic fan like we would prefer since Miss Snotty only gets worse with all the crazy high pollen lately.  We’ve had her on Claritin which didn’t seem to do anything at all.  We now have her on Zyrtec, but it appears to make her really crazy inside and she acts out strangely.  So I’m not really sure we’ll continue.  She hasn’t had it last night or today, so we’ll see how she does.

That’s where we are. Not all that bad, not all that fun. But I’ll take it over antibiotics and coughing and fevers and whining (more than usual, on Kinlee’s part) any day.

I now return you to your regularly scheduled day. Thanks for tuning in.

New experiences coming right up

(This is a scheduled post…so I’m writing it Friday night, but you won’t see it til Saturday.  That’s because I want to be sure you have time to see this post with the exciting news!)

Tomorrow/today (Saturday) I will be spending the day at our local/regional DS conference.  The DSAGSL puts this on each year.  I’ve never gone, for a variety of reasons.  But this year, thanks to my buddy Adrienne, I ended up on the planning committee along with Julie. Both of us first-timers, and kind of representing the “moms of younger kids” set.  I also was asked to be part of a workshop with a parent panel on the process of doing the first IEP, transitioning from Early Intervention to the school system.  So tomorrow will be a busy day, one that I am expecting to be exhausting in a few ways, but I hope that it will go well for those who come.  I really hope more are in attendance than what it sounds like there will be.  Julie is picking me up at 7 am. Neither of us like to be up and presentable at that hour.  I believe some caffeine will be involved.

Then on Tuesday morning, Braska and I—more Braska than me—will be “the entertainment” (or the lab rat) for a demonstration by Lori Overland, all the way from Connecticut, at a seminar for therapists here.  Braska will be exhibiting her trouble moving food around in her mouth appropriately and her struggle with liquids remaining in the mouth when she tries to take a drink.  I’m really looking forward to this because Lori is a very well regarded expert on oral-motor issues and feeding, and we get an evaluation and recommendations from her for Braska as a “Thank You” for volunteering.  (Worth like $600!)  I’m all for any expert help with feeding!! And I love that we can be a part of helping people learn about issues that a tiny part of an already small population deal with daily. It was really neat how the kiddos who were originally scheduled were unable to attend and we jumped in to fill a need at the last second…just setting this up today!  Can’t wait to see how it goes.  I just hope Braska cooperates with what they need.  I do have to give a bit of case history to the group, so that will make me nervous, but I’ll make it.  It’s been a while since I’ve had to speak to a group of healthcare professionals, but I think I can remember how.

So it’s going to be a busy weekend around here—I already had an event tonight that I helped with at church, conference tomorrow, Father-in-law’s birthday on Sunday, couple appointments on Monday, and oral-motor seminar on Tuesday—I think I’ll have quite a bit of new and helpful information by the time I get to sit down, breathe, and process it all.  I’ll be sure to share.

Feeding this baby--What and how much?

Ok, all you moms with littles... I've never had a kid that eats before, so give me some help.

What do you feed a 7-month-old?
What's the progression from cereal to baby food to _____ look like?
How does the balance go between milk/formula and "other"?

And don't give me the "oh, you'll know...she'll tell you." I don't work that way... need some specifics here!

Lessons learned: Conference on DS, Behavior Session

On Saturday, I went to a half-day conference at Children's.

Feeding, Speech, and Behavior: Caring for children with Down syndrome from infancy to adolescence.

If I hear of a conference, I'm interested. If it's related to DS, I'm more interested. If it's gonna talk about feeding, speech, AND behavior, I'm there. I love to hear all the new things, tips, what's worked for others, and what the pros say. This particular conference was geared toward therapists and caregivers as well as parents. I like this type of format because the information is a bit more detailed and clinical, not just anecdotal, and I enjoy that alot.

I took alot of notes on the materials and outlines that were handed out, so I want to put together a few posts to document more clearly what was discussed and what I noted about things. It might be a bit choppy and random, but I'll try to be sure it makes some sense. As many of my posts are, this will be mostly for my own purposes but I'm sure there might be a thing or two that could be helpful to others. I'm starting with behavior because it's been a hot topic lately in a few of my circles, and I found it especially interesting.

And for the record, I have implemented a few new things that are working with Braska. She was having more "issues" with my time being occupied by Kinlee than I realized. If you want more details on that, I can address that soon.
____________________________

Understanding and Supporting Behavioral Development in Young Children
Mary Michaeleen Cradock, Ph.D.

• We all want our kids to be happy, develop to their potential, and have meaningful relationships. Behavior is a necessary element of this because it is related to happiness/satisfaction, it's critical in how children are perceived, it can support or interfere with abilities, and it can optimize experience during critical period of brain development.


• Factors that impact the behavior of young children: Age; Health: sleep/fatigue, illness, medications; Temperament (personality); Environment, including parent behavior.


• Most children, regardless of their degree of ability or disability are classified as "flexible/easy," as opposed to "feisty/difficult" or "fearful."


• The lovely stereotype that so many try to debunk whenever possible--all kids with Down syndrome are happy and amiable--is obviously not true for everyone. BUT--even though kids with DS have a range of temperaments just like other kids, it does appear that kids with DS are generally more pleasant, happier, and have a higher compliance at a younger age than kids without DS.


• Discussion/presentation focused largely on the elements of the child's environment, specifically parenting style and response to the child's behavior.


• For kids with DS: Most do NOT have significant problems in emotional, social, behavioral, or occupational realms. Many have healthy social adjustment.


• A small percentage of kids with DS have a type of behavior disorder, like ADHD, oppositional disorder, phobias, or autism.


• Kids with DS tend to have these behavioral characteristics
  Increased off-task behavior, avoidance, strong-willed behavior. This is often seen when they are presented with tasks that are above their level. Most often used: avoidance.
  Limited persistance. If they are unable to do something the first or second time, they will often give up and be satisfied to do something different instead of the original task. Example: If given several toys to play with and one of them has small switches or knobs that they cannot yet grasp or use, they may be just as pleased to go on to the next toy instead of trying repeatedly over a period of time to conquer the difficult toy.
  Limited self-regulation. Delay of gratification or waiting may not be understood.


• Avoidance often includes "charming." Though we all like the cute smiles, the sudden cuddles, the waving or blowing kisses, charming can often be used to avoid experiences or lessons that would be helpful and are necessary. Charming allows the child to focus on the social element instead of the problem solving that might be required in the situation. It can cause them to miss a learning opportunity. And it can become a habit. We must teach the appropriateness of actions like this as they grow up so that it does not become a crutch for them that costs them important learning experiences. Example: When a child is working with a therapist who is requiring them to do things that are difficult or uncomfortable, they may (Braska does) begin to smile or attempt to hug or distract with another cute trick like saying silly things, dancing, giggling, etc. The therapy is important and needs to be continued, so the charming must be handled appropriately so that the learning is still primary and the child is not allowed to succeed in changing the direction of the situation.


• It is a myth that children with DS cannot change their behavioral style. Evidence suggests behaviors CAN be changed, and, often, modifying the environment makes a difference.


• Remember that kids with DS are visual learners. Their verbal working memory is less well-developed than typical kids their age. Example: When telling a child to go to their room and get their shoes, they may go to their room, see a book, sit down and read, while completely forgetting that there was a second task in the instruction. This skill takes longer to develop, so expecting one without the skill to do this can cause what is perceived as behavioral issues, but it is simply that the child is not yet able to complete this task in that way. Give one-step instructions, and when transitioning to two-step, go with the child to assist them in remembering at first, so that the distraction is caught at onset instead of after they've been sitting there reading for 10 minutes when you go to find them.


• Social attention is a powerful force. Especially parental attention. Removing it can be a very effective method of discouraging unwanted behavior.


• Inconsistent behavior is expected. Kids with DS tend to show more instances of doing something several times and then not doing the same skill, for no apparent reason. This is why consistency is necessary when teaching a new skill.


• Behavioral challenges interfere with learning new skills, socially isolate the child, may result in self-injury or injury of others, and can cause damage to environment.


• Solving behavioral challenges:
  Define current behavior and the desired behavior
  Identify the function of the behavior
  Analyze environment for contributing factors
  Make a plan to address
  Test your theory
  Modify


• Define behavior.
  Antecendents: setting, activity, time of day, others present, child's condition--before the behavior. What was going on before the behavior? Be specific.
  Behavior: Specifically what is the child doing that is, in this case, unwanted.
  Consequences: Actions and others' behavior that follow the behavior.


• Most parents or caregivers tend to focus on the B(behavior) and C(consequences) but the biggest difference is made in A(antecedents).


• Scenario: Jacob's doctor visit. Antecedent: Going to the doctor's office. Behavior: Protesting, Kicking, Pulling away. Would run away if not being held. Consequences: Taken out of the office by mom, remained out for 15 minutes til calm. Returned to the office with mom and nurse.


• Name desired behavior: Go to the doctor's office without protest.


• Questions to ask: Is this in the child's skill set? Is additional skill development needed to meet the requirements of the desired behavior?


• It's helpful to think in non-negative terms for desired behavior, eg. "Enter doctor's office calmly and politely", instead of "Don't kick, scream, and protest when going to the doctor." Another example, related to potty training, eg. "Let's keep pants dry today," instead of "Don't wet your pants."


• Identify the function of the behavior. What is the payoff? Possibilities: Gain attention, gain tangible consequences, sensory experience, escape or avoidance, communication, emotional regulation, release tenion, fill a need.


• The most common functions of unwanted behavior in kids with DS: Gain attention, through charming behavior, social gaze, crying, hitting. Escape or avoidance, through tantrums, charm, focus on other activities/distract.


• Function of Jacob's behavior in scenario. Possibilities: Avoid new situation or old traumatic situation, gain attention of nurse/mom.


• Analyze environment for contributing factors. Setting, time of day (very important!), others' behavior/reinforcement. Ask who, when, and where.


• Behaviors are maintained by reinforcement, either positive or negative. Positive reinforcement: Behavior results in the desired activity or item. Negative reinforcement: Behavior results in removal of preferred activitiy or object.


• Consider when the unwanted behavior does NOT occur. What is the setting then? Eg. Braska's behavior of refusal to eat. When does it not occur? Braska eats much better in a restaurant or public setting usually.


• Adjust desired behavior according to information about skill set and when the avoidance does NOT occur. Example: If the desired behavior is that I want Braska to mind when I give her an instruction, it might be too vague at her current level. If she seems to always avoid if I am not right there next to her to enforce the instruction, I might want to scale down the expectation to begin by requiring her to mind if I am sitting next to her (Give me the book.) Then expand as that skill becomes more consistent to where she can mind if I am across the room. (Put your toys in the drawer.)


• Make a plan to address the behavior. Address the antecedents: Modify the environment if it seems to contribute to the unacceptable behavior. Modify the demand by offering choices or offer collaboration/assistance to help them accomplish the task so they are not instantly overwhelmed with the request. Address the consequences: Pay attention to the positive things and remove attention from the negative (when no harm is done). If the desired behavior is to sit calmly in the doctor's office, praise the child for sitting quietly even if it has only been a short while. Praise for calmness can even be given when the child is being held or read to. The key is to associate positive attention to the positive behavior so that the child is not only getting attention, though negative, through unacceptable behavior.


• Extinction burst: Try to extinguish the behavior, they ramp up the defiance, parent escalates the extinction attempt, child ramps up again. Example given: When a person puts money in a soda machine and no soda comes out, they push the button a second and third time, pressing it repeatedly. If no soda comes out, they may bang on the front of the machine. If there is still no soda, they may shake the machine or rock it back and forth. If this does not work, they throw up their hands, yell an expletive, kick a wall, and walk away. Extinction burst. Like a child who almost seems to have to work himself to a frenzy and then they seem to find a release finally and become instantly much calmer. If the soda came out after the shaking of the machine, that would cause that person to go directly to that level each time he wanted a soda. The same is true of a child. If they receive their desired reaction, be it attention, candy, a toy, or an activity, when they scream and writhe on the floor, they will then use that over and over to get what they want. If they are given what they want ONLY when they are exhibiting acceptable behavior, they will learn that is the best option. (Unexpected factors of hunger, fatigue, and outside changes can alter this, of course.)


• To solve behavior challenges, the hypothesis must be tested more than once. If a behavior has been around for months, it will take at least a few weeks of consistency to re-teach the desired behavior. Trying something a couple times and counting it a failure is giving up to soon.


• Never forget to involve all the "key players" in working on new behaviors. Extended family, friends who are around often, daycare providers, teachers, etc. If a behavior is allowed by grandparents it will be almost impossible to avoid at home. Consistency is ultimately important. Again, this seems to be even more important in kids with DS than typical-developing kids.


• Sometimes it is helpful to get input from others who know the child well to determine the antecedents of the unacceptable behavior. They may notice things a parent doesn't. A common pitfall in solving behavioral challenges is setting the bar too high. Make sure the child is able to comply with request. Expecting actions that are out of the child's skill set will only encourage frustration and thereby avoidance.


• Always choose ONE behavior issue to work on at a time. Choose battles carefully and focus attention on one thing instead of solving all the issues at once.


• Parents must make sure to maintain their own health, mental and physical, in order to be able to have the energy, positivity, and stamina to deal with these challenges. Take care of YOU.


• Example given by audience of issues they are dealing with: Child with glasses, removes them immediately when grandma turns attention away from reading or playing to answer a phone or tend to cooking. Suggested actions: Praise the child for keeping the glasses on even for one or two seconds during a quick look-away. Start by turning face away but leaving hand on her shoulder or arm to show attention but not visual. Praise when she leaves them on during that turning away. Build up time turned away, then begin to step away, sometimes for only a second or two, and return to praise her for keeping them on. Return to read or play again before attempting again. Increase slowly of several days or weeks depending on the child's response. If the child removes the glasses, replace them without speech, no lecture, no scolding, just replace them and continue on. This is taking away the "drama" that can often be the desired response. If grandma must step away for a moment, remove the glasses and take them with her (like to check on dinner) and then return to replace the glasses and continue the one-on-one time. This will help remove the possibility for negatve reinforcement and the chance to defy.


• Example of issue given by audience: Running away when outside playing or in parking lot. Suggested actions: Praise child for walking next to parent, even when parent is holding onto child. "I love when you walk next to me. It's very nice to have you hold my hand!" Spend more time praising the child for remaining close in the yard than time spent chasing or yelling at the child as the parent chases the child. If the child runs, when she is caught, do not lecture or scold again, this is once again attention/drama. Remove the child from danger without excessive talking. Practice can be very successful. Take the child to the car or to the store solely to reinforce proper behavior, so that there is not the stress of actually needing to accomplish shopping or being in a hurry to get somewhere.


• Book suggestion: Achieving Best Behavior for Children with Developmental Disabilities by Pamela Lewis.

Session notes on Feeding and Speech to come soon.

To move or not to move

I'm sitting here in my all-too-usual spot. The recliner. Kinlee's asleep on my left shoulder, Braska's asleep cuddled on my leg. I'm "typing" with my right hand while the laptop sits on the arm of the couch next to the chair. (I'm getting much faster at this one-handed typing lately.)

Do I wake them both to attempt to put one or both in bed? Do I just sit here and let them sleep even though Braska is due for a feeding? Braska missed school today due to lots of goo in her head, so she really needs sleep. But she might sleep longer in her bed. And do I want to sit here stuck for the next hour or so?

They are both so cute when they sleep. But dang, they are little heat machines!

Would you get up or stay put?? Go ahead, tell me...I'll be here.