Future Chase

More from NDSC:

One of the most fantastic aspects of going to the conference was being absolutely surrounded by families like ours.  We absolutely have very supportive friends and family members who are loving and understanding toward Chase...but there is something about sharing a glance, a smile, a wave, or a handshake with another person who knows...without even going into details.  There is a kinship that doesn't even need to be nurtured.  We are longtime friends before words are even spoken.

As we played in the resort pool Friday morning, we met a few families and new friends with some interesting commonalities (and that doesn't even count the extra chromosome!).  Chase played with a little boy, Eli (Elijah), who was a little over a year older than he was, who had a little brother, Gavin, who was just a few days older than our Gavin!  (for those of you who have bad memories, Gavin's middle name is Elijah!)

But the most memorable meeting was that with a boy named Adam.  He and his dad were swimming there as we were getting Gavin in the water.  Gavin was crying- he is generally against life vests and was protesting his current situation.  Adam went right up to him and spoke quiet words to him and stroked his hair to calm him down.  He was so gentle and so sweet...and also silly and fearless, as evidenced when we followed him up and down the waterslide several (hundred) times.  But the thing I loved MOST about Adam?  It was that he looked exactly like Chase...in 6 years.  The same coloring, the same freckles...it was like looking into his future.

And that is why we refer to Adam as Future Chase now :)

But do you want to hear the best part?!  I didn't have my camera at the pool that day (shame on me!!) and we didn't see Adam again while we were there.  I was kicking myself, because I wanted to share this crazy experience with everyone at home, but had to do it in words, and that just doesn't do it justice.  THEN.  I happened to be on Facebook, as I am all the time a couple times a day, and I saw one of my FB friends post her photos of Disney.  You know who was on there, right?  Future Chase's face was plastered all over my feed!!!  Unbeknownst to me, Anjie had become my 'friend' through mutual Ds bloggers/facebookers...and I didn't even know that she had been raising Chase's future twin!

Social networking ROCKS!

I ok-ed it with her...and here it is:

The Chase/Adam Comparison!!

Tell me I'm not crazy.  They look alike, no?

(And props to LeShayne who took that awesome photo of Chase.  If you are ever in FL and want a great photographer, check her out at Barefoot Summer Photography!)

What We Do

Happy 13 Months, Guy!

Happy more than one year birthday, my little walking boy!  

And on a side note, does anybody else see the resemblance?

eReading Pro

I guess I will jsut disseminate my NDSC conference information in small bits, since I can't seem to find the time to sit down and digest everything all at once.

Anyhoo.

One of the workshops I attended was about reading- specifically the eReading Pro program.  I went in as a skeptic...I knew a little bit about it- flashcard based, amazing stories of 3 year old readers...blah blah blah.  But what about comprehension and phonemic awareness?

After the presentation I was hooked.  It completely made sense to me.  The premise is that Children with Ds are visual learners, and are strong with memorization skills.  So, learning to read through the traditional letters make sounds, sounds make words, words make sentences...doesn't work as well.  Part to whole is MUCH more difficult for our kids to grasp than whole word recognition.

The phonics part will come later, and the comprehension part is addressed through the words that are targeted (they are functional every day words).  It STILL goes against every teacher-grain in my body, but I have to remember that Chase's brain works differently...and we have to think differently to address his needs.

I think it is absolutely worth looking at...and I might have bought the program and will be trying it out with Chase ASAP :)

Juice Plus+

One of the workshops that I attended at the conference was on nutrition.  Much of it was reiterating what I have already been reading about and trying to put into practice at our house, and some of it pinpointed other aspects of health that I hadn't really given much thought.

I mean, obviously eating more veggies, fruits, and whole grains has GOT to be better than eating Twinkies, Hamburger Helper, and BBQ potato chips...but why?  And how much?  And what difference does it REALLY make?

Anyway.  She mentioned Juice Plus+ in her presentation as a way to bridge the gap between what we should be eating and what we are eating (it wasn't a sales pitch...just a mention).  Not that we should continue to eat crap and cover for it by taking a supplement, but to use it in conjunction with a healthy diet.   We also have a few friends who use it religiously a swear by it.  So, with Chase's penchant for picky eating paired with his digestive issues, and my desire to keep my family healthy, this seems like something that we would like to try (oh, and Chase's doctor even gave his blessing).

You can check out the research here for yourself.  We are going to check this out and put in an order.  Anyone else want to try it with us?  Let me know.  There is a research program going on now where you can get up to 3 years of FREE product for your child, and another program where you can get 2 months of product for free by participating in a survey after 90 days.  It can't hurt, right?

Real Life Friends

Bryan always teases me when I tell him stories about my 'blog friends'- "What?  They aren't your real friends?"

Well, ha!  Chase and I met Jennie and Micah from A Little Something Extra in real life in Orlando!

So there.  (And no, Chase was not sleeping, though he most likely could have, given the completely awful sleeping patterns we established while we were there!!)

My 1AM Wake Up Call

Chase doesn't so much have a monitor in his room at night anymore.   Not so much because he doesn't need it, which he doesn't, for the most part, because he usually sleeps through the night, and if he doesn't he yells loud enough for me to hear him down the hall, but because I use it more during the day and I forget to bring the parent part of it upstairs at night.

Well, last night, close to 1am, I heard him calling for me.  So I stumble out of bed and toward his room, only to notice that his voice isn't coming from his room...it is coming from downstairs.

Yeah.

Background:  a couple weeks ago Chase figured out how to outsmart the toddler doorknob guards that I used to keep him in his room.  His hands are just little and sticky enough to get behind the contraption and turn the knob to open it.  So, I did what any responsible parent would do to keep him in his room during nap time:  I turned the whole knob around so I could lock him in from the outside.  Fire hazard?  Perhaps.  But the boy needs his naps.

That system works great when I remember to lock it.  You know where this is going, right?

Last night, I put Chase to bed and he went right to sleep.  And I closed the door and forgot to lock it.  And then little man woke up in the middle of the night, let himself out of his room, and traipsed downstairs all by himself.  

When I made it downstairs and picked him up (he was just sitting at the bottom of the stairs yelling, "Mommeee!  Mommeeeeeeee!"), he looks at me and asks, "...Gabba...?"  Um, no.  No Yo Gabba Gabba at 1am, sir.  Back to bed with you.

And as I was turning to carry his disappointed little self back to his room, I noticed that not only had I left his room door unlocked, but also the front door.  No dead bolt, no knob lock- nothing.  I got a pukey pit-of-my-stomach feeling.  He could have (and would have, I am sure, if it had taken much longer for me to get downstairs) opened that front door and walked straight outside in the middle of the night, and no one would have known until morning.  

I had a very hard time falling back to sleep with all of the scenarios racing through my mind.  I still get sick to my stomach when I think about what could have happened.

It is so difficult and frustrating, when he has the physical capabilities of a 3 year old, and the urge for the independence of one (not that at three Ian was ready to walk around the neighborhood in the middle of the night by himself, but he could certainly walk next door by himself or play in the culdesac with visual supervision) but cognitively, he is right at about 2 years old and completely lacks any kind of fear of the unknown and has no concept about limits.  

Constant vigilance, I tell you.  Constant.  Even while he sleeps.  You can bet I will be putting that monitor back in his room full time so I can hear every little sound that child makes from now on.

Nutrition Website

I snagged this website from LeShayne's blog.  It has a LOT of very interesting information about it regarding how and what we feed our kids.  I feel like it takes a pretty practical look at our children's diets and how we can better them.

Orlando Part ONE

Can be summed up in my SIL's post here.  LeShayne and Todd graciously watched our circus troupe while Bryan and I learned all sorts of Ds-related things at the NDSC Convention.  Her photos of their adventures tell that side of the adventure.

I'll be back later to talk about the grown-up side of things.

Disney!!

We are off to Orlando tomorrow morning!  Well, we are actually leaving in the middle of the night tonight to get to FL by lunchtime to meet Bryan's BFF from high school :)

No parks for us (3 kids under 5 in a crowded theme park at the height of summer?  No thanks!), but plenty of sunshine, pool time, and eating and shopping, I am sure.  I am so looking forward to hanging out with family and friends, meeting NEW friends (in real life!) and having time to enjoy everyone.

Oh, and we will be at the NDSC convention, too :)  Back on Monday!

Lake Tillery

We spent the day out on Lake Tillery yesterday with the Waneks again.  After being so consumed with the same routine, plus Bryan has been putting in lots of extra hours at work the past couple weeks, it was really really nice to spend some time just playing.

I wish I had thought to bring my camera, but it was out of batteries and by the time I thought about it there wasn't enough time to charge them.  It's ok, though, because it was all very hands on with the kids, and also Chase (and Michael) both love to throw things off the side of the boat, and I have a feeling that the camera might have been a target.

We spent a little time at the pool in the morning, which had a shallow end that was perfect for Chase to wade around in without assistance.  He, however, wanted to be just like Ian and jump off the side of the pool into the deeper end.  After many many jumps, we went back to the camper and had lunch and packed up for the boat.

Chase and Gavin took naps on the boat for a bit (who wouldn't fall asleep on a comfy lap with the wind in your hair?!?) and Ian and Emily knelt at the front of the boat, looking out over the water, sometimes Titanic-style.  I will never get over how adorable Ian is with his blonde surfer hair, especially when it is all windblown and almost white in the high sun.

We dropped anchor in a calm cove and spent the next few hours swimming...something I thought that I wouldn't enjoy all that much, truthfully.  Lake swimming, honestly, with all the living things in it and not being able to see what is on the bottom kind of gives me the heebie jeebies.  BUT- the water was warm, but nto too warm, and the sun was hot, and the kids were having a total blast, and even I have to admit that floating on a noodle in the lake was very very close to heaven.

Ian and Bryan rode the Jetski a BUNCH, and the rest of the time Ian and Emily just goofed off while they floated in their life jackets and jumped off the boat repeatedly.  Chase discovered that jumping off the boat is just as fun, if not more, than jumping off the side of the pool.  I wish that I could have videoed him- he would count, then launch himself off the side, go completely underwater, and come up laughing hysterically with a wide open mouth grin.  Every time.  He LOVED it and was fearless.  Even Gavin loved it, not jumping, but floating around, as long as we didn't try to put that pesky life vest on him.  Then he would scream.

We drove home with three very very exhausted kids, two of which quickly fell asleep, and one (ahem, Guy) who refused to give in and close his eyes.

All in all, a lovely day to share with good friends and family...we need to do more of this whole 'play' thing.  Life is too short.

Article Regarding Ds Research

This article is interesting- it highlights some of the advances in Down syndrome research and treatment, and also some of the reasons for it.


It is strange, because yes, Down syndrome is part of who Chase is, and he obviously wouldn't be the same without his little something extra...but it doesn't define him.  I've heard some people say that if they could take Ds away from their child- if there was a magic pill that 'cured' it- that they wouldn't do it.  I don't know.  I don't know what I think about that.


I do agree with the article, however, that being able to improve cognition, even 10 IQ points, would allow so many people to be more independent, to lead even more fulfilling lives...to live with less frustration.  This quote addresses the social justice argument:  “People with Down syndrome add a lot to our lives; we feel good about them. But how do we show respect for them? Do we show respect for them by saying, ‘You’re very nice people, and I’ll be kind to you?’ Or do we really address them as fellow humans and say, ‘What is it you would like?’ And what they would like is just what we would like. They would like to be working, they would like to have the option of independent living, they’d like to participate fully in the educational system, they’d like to have friends — and their learning abilities do impede their abilities to do these things.”

Also, I think an interesting point was brought up regarding fundraising:

“A great deal of the funding that has been raised for cognitive research for Down syndrome is from parents and close friends of people with Down syndrome,” says Schoen. “It’s our goal to reach out beyond.

“Unlike cancer and diabetes, I don’t have to worry about contracting Down syndrome. People don’t contract it, so unless they have a connection they wouldn’t be all that concerned about it. But we need to be concerned about everybody.

“We’ve come up with drugs to help people fight cancer. We’ve come up with therapies to help people breathe more freely. Why don’t we, as a caring society, from a fairness and social justice standpoint, why don’t we support a cause that helps a good size of the population of this country think better, learn more readily and so forth?”

Anyway.  Good points, interesting reading.  Makes me wonder where we might see this research in the future and how it will affect Chase and his little buddies.

You've been waiting for it...

And here it is!!!

Guy got a haircut today.  Well, actually I gave him a small snip, just to get it out of his eyes and off his, um, shoulder blades.  It is still a little long in his face, but I was terrified of giving him that "just shorn" look.  It is WAY better than it used to be.

Look at what a ragamuffin he was before!

He was a little squirmy for picture taking today, so these aren't the best shots.  I'll try to get more tomorrow, because I also got him his first pair of shoes today and he is ADORABLE in them.

Guy Steps

Gavin has started to walk!  I caught some photos of him taking his first steps- he was so proud of himself.

I was talking to Bryan, telling him that it was going to seem strange to have all 3 boys walking.  Chase didn't walk until he was 23 months old, and Gavin was born when he was 26 months.  So, really, it has been over 3 years that I have had someone almost constantly in my arms.  Crazy.  I have to admit, I have had day dreams involving me opening a car door,and the boys spilling out and walking into a store without a stroller in sight.

On a side note, the outfit that Guy is wearing is one of his new birthday presents.  He was wearing it again for our 4th of July party, but I had taken the shorts off of him when he was playing in the water outside.  Then, later on, Ian was getting dressed, and my parents were helping him find his clothes.  I noticed afterwards that Ian's shorts were tight- he was wearing Chase's size 2T jean shorts...then I wondered, as I found Ian's actual shorts and his underwear in a pile on the floor, what (if any) underwear he was wearing.  My parents told me that he was wearing the plaid boxer shorts that were by the jean shorts he had put on.  Are you following?  Ian was wearing Guy's shorts as underwear (18 mos) under Chase's shorts.  Could that have been comfortable??!

Culdesac 4th of July Extravaganzaaaaaaaaa!

I pictured a down home cookout filled with family and friends.  I pictured eating outside and kids splashing in the pool all afternoon and into the evening, where we would then have a small fireworks show in the culdesac.

Well, it kinda happened...:)

We did eat- a LOT.  I have to give everyone credit- my friends are awesome foodies, and the men fired the grills with mucho gusto.

And the kids played in the pool.  Yeah, we were a little weary of the fact that the recent flood-worthy rains had been washing away the sand under the pool, throwing it a bit off balance, but it really wasn't all that bad.  Well, until the kids had been in it a while, and during dinner we noticed that the metal frame of the pool was starting to actually lift off the ground on one side, and the white vinyl of the bottom of the pool was exposed.

Then there were the 3 or 4 streams of water that sprouted from the exposed bottom side.

And finally, worthy of any America's Funniest Video prize-winner, the seam at the bottom of the pool ripped wide open, letting loose a tidal wave of I don't know how many gallons of water, but enough to cover half the yard and strike fear into the baby's eyes who was unfortunately stuck in a pack-n-play in the middle of the rush.

Amidst the chaos, as most everyone stood  open mouthed at the catastrophe, Brandon had the sense to rescue the baby, and Bryan and some other dads thought to unplug the fan and move the bouncehouse out of the now very very soggy yard.  Porter stood at the top of the swingset, bawling at the top of his lungs (not scared, just upset at the loss of his pool!).  Mike sprinted home to get his skimboard to use on the new riverulet between our house and the Larsens'.  The kids played in the mud and eventually got back into the pool, which was still standing, leaning a lot less, and contained enough water to splash around in ankle deep.

And nobody had a camera out.  There goes our AFV prize money.  Angelle did get some after shots, though:

The rest of the evening progressed as planned...kids were dried off, desserts were eaten, and fireworks were lit.  Bryan and Mike put on a good show in the road, and we could also see the city's display over the hill in the distance.

Oh, and then Mike threw the remnents of the fireworks away, neglecting to make sure that they were all detonated and cold.  Leslie noticed a smoke smell in the air, Angelle and I blew it off as leftovers of the local displays...and then our trashcan exploded.

No one was hurt, and surprisingly, none of the littles were woken up.  Lesson learned:  douse the firework remains before trashing them.  Oh, and NEVER ignore a leaning pool.