Inspiring Young Man

Check out this uplifting article (http://news.yahoo.com/s/usnews/20090403/ts_usnews/how1autisticyoungmanrunsabusiness) in US News via Yahoo about 23 year old Joe Steffy, an enterprising young businessman who also has Down Syndrome and non-verbal Autism. Pretty cool!

Easter

We had a very nice Easter. We made it church and made it home without any meltdowns and with all outfits still tidy enough for pictures (from a distance)! It's funny, there were 2 little girls at church yesterday who were dressed so beautifully with their pink satin dresses and bows in their hair! Our pastor's wife knit all 3 of my boys beautiful sweaters, so they all had on tan chords and their sweaters. They looked SOOO CUTE (I'm not biased at all!) By the end of church, my boys had sweaters and shoes off, juice spilled down the fronts of their t-shirts, were sweaty from playing hard and grimy from the after-church-cookies! Those 2 little girls still looked PERFECT! I love my sweaty grimy little boys and wouldn't trade them for the cutest pinkest satin-dressed girl, but man, I'd like to get through one hour of our day and still look tidy even up close!! :)

Here are Zeze and Kai finding Easter eggs! Kai had a great time and was even more excited when he shook them and realized there was candy inside! Yes, I let my kids eat Teddy Grahams, Peeps and jelly beans before breakfast....who started this whole candy thing anyway? :)
Kai and I dyed eggs for the first time (for him)!
The boys: You can see Zeze is trying to get his socks off. When he finishes doing that he'll try to get Noah's socks off.

Family pictures. These are the 2 best. Zeze was in no mood for pictures...hmmm, do marshmallow peeps have anything to do with that?

This is a picture of my mom preaching at an Easter Sunrise Service on top of a ski mountain. Beautiful! If you look really hard.....you'll notice that we are NOT there. That's crazy!...even THINKING about brining 3 little kids on top of a mountain at 5am during 0 degree weather makes me shudder. However, Chad and I will do that some day, when the kids are grown or old enough not to complain the whole time and wreck it. :)

The R-Word

This is an interview with John McGinley (Dr. Cox from the show Scrubs) whose son has Down Syndrome. I missed the national "Spread the Word to End the Word" day on 3/31/09, but I can still inform you all about what it was. It was a campaign to stop people from using the R-word, or Retard/Retarded in common conversations. I figure I can expose you all to what I am learning and what has become part of our lives....

Things I'm Thankful For...

-Noah is sitting!!
-Zeze is walking!!
-Zeze is eating with a spoon!!
-Kai is signing about 1/3 of the letters of the alphabet and can recognize ~90% of the letters when I sign them!!
-Kai is signing partial sentences "Want more food please." "Want socks and shoes please" etc.
-Noah signed "more eat" today for the first time! It was only last week that he signed "more" for the first time.
-Zeze can sign Ball, Eat, More, Cat, Water, All Done, Mine, and an occasional Banana. He is also saying, Dada, Mama, Cat, Ball, Nap, Juice and Get.
(Oh, we're all learning sign language since often kids with Down Syndrome take a long time to learn to speak even though they can sign much earlier. Zeze and Kai are absorbing the Signing Time videos like sponges which is a surprising bonus!)
-Kai is both spelling and reading many words like, dog, cat, mom, dad, ball, water, truck, cake, milk, malakai, pot, hat, car, book, spell, stop, go, apple, etc. It's amazing. He just keeps asking me to spell different words or to sign/spell them.
-Kai is getting more comfortable at school and for the first time has initiated conversation with his teacher and a friend...he talks a lot at home, but at school he'll only answer questions and not initiate anything.

Last week I was so discouraged because we'd all been in the same place for months. I thought that Noah would never learn to sit by himself and that Zeze would never stop crawling and Kai would never develop at school etc. Turns out we just need a week or two of being healthy and not being in the hospital for us all to flourish!

This is Noah SITTING by himself playing the piano!!

Then and Now

Almost exactly one year ago (4-8-08), Noah's heart was stopped, he was on a heart-lung bypass machine, his chest was split wide open and doctors were repairing his heart. Chad and I were in the waiting room and suddenly a woman walks up to us and asks if we mind if she sets up her harp and plays right beside us. Seriously! She told us that this was her day to play the harp in this waiting room. That harpist was the catalyst that made us step outside of "the box", leave the waiting room and go get wine, cheese, crackers, chocolates, strawberries and Bailey's Irish Cream and sneak them back in. We realize now, that during that hour that we were out of the hospital, was the first time in our lives that God gave us a glimpse and a piece of "the peace that transcends all understanding".

When I hear that verse I usually think of the kind of peace that would feel similarly to laying on a beach with the perfect weather and not a care in the world. I thought it would be like an extreme amount of peace, but actually, for us it was a kind of peace that is really hard to explain (kind of like we don't understand it :) ). The fear, the dread and the anguish were still there and still very present, but it was like God let us step outside of that box and stand next to it for a bit. Just like we stepped out of the waiting room for a bit, God gave us this weird "peace" that let us stand next to the pain just long enough to get our breath back so to speak. We felt lighter...not happy, not joyful or any of those other words...we still felt fear and anguish but it didn't "taste" as strong for that hour. It was the lowest point in our lives, yet it was also the coolest because God was so completely present with us (though we didn't fully get it at that time).

Anyway, we've all come a long way in a year! In fact we just realized that whole peace thing only a few days ago! I hope and pray that as we continue to distance ourselves from the trauma of it all, we will continue to recognize the many ways that God was there with us. We have known all along that He was there, but it's much more amazing to actually "see" the specific instances!!

I'll include some pictures from then and now so you can all appreciate how far we've come!

Noah Then: just after heart surgery. He weighed only 8lbs and was 4 months old.

Noah Now: just after rolling around on the floor in syrup and french toast that he had thrown off his tray.

Zeze Then: I think that was only one of a handful of times that Zeze was smiling in those days...before we found out he had a dairy allergy. I think he screamed almost every waking hour before we changed his diet.
Zeze Now:
Kai Then:
Kai Now: learning to ride his "new" bike. (I love Freecycle!) It was just before bed, but I couldn't wait any longer to show him the bike, so we let him go out in his PJs.

Twins then

Twins now

Brothers then
Brothers now

Our Country's Leader

Copy and paste the link below on your bowser if you would like President Obama to know how you feel about his comment on Jay Leno the other night.

It's a sad day in America when the leader of the free world makes such a comment.

http://www.whitehouse.gov/contact

See the Interview here: (his comment is at the very end during the last 4 mins)
http://www.nbc.com/The_Tonight_Show_with_Jay_Leno

Late Night Jokes From Our President

Check this link out. Sounds like a cool kid!
http://sarahely8989.blogspot.com/2009/03/late-breaking-news-letter-to-president.html

Helmet

Here are two pictures of the boys watching T.V. They don't usually sit so nicely together on the couch like that. I think Chad was sitting with them all and then jumped up to get these shots. You can see Noah has his new baby helmet on. He's getting used to it and hopefully it will help reshape his head.

"Order's up!" Can you believe these two together eat 4 scrambled eggs, 2 pieces of toast, a pear (or banana) and 8 or more oz of milk every morning for breakfast!?!?! Noah can actually out-eat Zeze at times. Where do they put it? Noah's only 15 lbs and Zeze is only 19! Each one of them eats more than Kai (or Chad and I, for that matter). Crazy, huh?

Jingle Bells

Who would have thought that this song could be so much fun! Here is an exerpt of the latest changes:

"Bashing through the snow, in a one horse open school bus

over the fields we go, laughing all the way. Ha ha ha.

Bells on bobtails ring, making french fries,

what fun it is to ride and sing a sleighing song tonight. OH!...."

The "school bus" change was intentional and he'll stick in lots of different vehicles there. However, the "french fries" change is not intentional. I'm not sure if he thinks that's what I'm saying or if he can't pronounce it the right way. Either way, it makes me laugh.

Another funny thing is that I thought the song went, "Dashing through the woods." While Chad insists it's "Dashing through the snow." So the other night when I sang "woods" instead of "snow" Chad made a "WHACK!" sound effect and fell down as though he were smacked with a tree branch and knocked off the sleigh. Well, Kai laughed so hard! I've never heard him laugh so hard except when he is being tickled. Now, when we start up the song Kai gets the giggles and tries to copy what Chad did by saying, "Whack!" and falling down. It's really funny! Like I said, I never knew this song could be so fun! I haven't even taught him the "Jingle Bells, Batman Smells" version! :)

Dinner Then Bath

Good stuff! I'm always amazed at how white their sparkly new teeth look in contrast to the orange faces!


Kai had oatmeal for dinner that night. It's usually such a struggle to get him to eat anything that when he actually suggests something he wants to eat (within reason) we give it to him.



I couldn't resist the bath shot! They're just so cute in there together squirming around and splashing each other! This was Noah's first bath with the boys sitting up and he had a blast. He splashed more than anyone else!

Mmmmmm!

He just stood there looking around and exlaiming, "Mmmmmm! Mmmmmm!"

Has A Week Already Passed?

"We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11

"No Ice Cream, No T.V., Up To Bed"

I bet you think that this is what Chad or I said to Kai, but actually Kai said this to us! You know a 3 year old doesn't feel good at all when he'd rather go up to bed than eat ice cream and watch t.v.!

PetStupid

Someone I know (who shall remain nameless) got a rejection email from a company (who shall also remain nameless) yesterday. It was in the standard form of, "...we'll put your resume on file for a year...blah, blah, blah", except that at the very end he/she added this line.
"We believe that with your experience and accomplishments you will successfully find the right position in the near future. Your lucky numbers are 1, 3, 6, 7 & 22."
Ok, so I added the lucky number part at the end, but the first sentence is word for word. Doesn't that sound like a fortune cookie ending!?!? What's up with that? Pretty silly sounding to me!! :)

Here are some pictures of the kids, that have nothing to do with today's blog. :)

Scout is definitely interested in the fish now!

A Lesson in Blood Sugar Levels

I'll set the stage for you: Two preschoolers trying to play trains together before dinner (i.e. low blood sugar). This is what happens.
*Names have been changed to protect identities. (Ha ha ha) :)

Jisaac*: (Unintelligible screaming and crying while jumping up and down and flailing arms).
Kalakai: (Holding all the trains in his arms he runs away) "NO NO NO, MINE!"

Same situation with the trains AFTER dinner (i.e., restored blood sugar).

Jisaac: "Kalakai, can I have a train please?"
Kalakai: "Yes!" (hands over the best train with a smile)
Jisaac: "Thank you!"
Kalakai: "You're welcome!"

This actually happened! :) :)

Kai Quotes

Kai and I were sledding and I had to carry him and the sled back up the hill because the snow was too deep for him to walk. As I'm panting and stumbling my way up the hill carrying Kai and dragging the sled, he says to me, "Keep trying Momma! Keep trying!"

Today we were looking at our goldfish and I asked Kai what the fish's name was. He answered, "Orange." Then I asked if it was a girl or a boy and he said, "NO! It's a fish."

Ode to Chocolate Milk

Now that Kai is talking more, he's also started singing songs on his own. Even better than that is he's starting to change the words to the songs and apply his own joys and experiences to them! I love it! He learned Jingle Bells at school and he loves to sing it over and over again...especially the "Hey!" part at the very end. Anyway, he was eating lunch and broke into song when I gave him his drink...."Chocolate Milk, Chocolate Milk, Chocolate all the way. Oh what fun it is to ride on a one horse all day. HEY!" (to the tune of Jingle Bells).

He also loves the song "Baby It's Cold Outside". I have an old recording with Dean Martin singing it and we sing it whenever we go outside (yes, because it's FREEZING here!). It is so funny to hear a 3 year old sing, "Baby it's cold outside. No cabs to be had outside..." He doesn't even know what a cab is! So last night we were all sitting on the couch eating ice cream and he starts singing, "Baby it's cold in my mouth..." Hahaha! I love improv!

Zeze is AmaZing!

I just have to say that Zeze's never-quit personality can both frustrate and amaze me sometimes. Yesterday's feat was of the amazement kind. :)
I brought Kai to school 3 days this week (holy cow...how am I going to get to 5 days a week!?!?!). This involves getting 3 kids (none of whom can put on their own shoes, coats, hats and mittents, or get into their own car seats) dressed in warm clothing and loaded in the car to be at school for 8:30am.
Getting 3 boys ready at the same time is tough! If I do Noah first, then Kai and Zeze are at each other and screaming and crying about something. If I do Kai first, then Zeze is trying to poke Noah's eyes, pull his hair, climb the stairs, eat the gritty slush that has come off my boots or tear apart Kai's train set. Noah and Kai leave each other alone, so it makes sense to get Zeze ready first (It's kind of like that riddle with the row boat, a fox, a chicken and a sack of corn...who do you take across the river first?) So I put Z in his snow suit with the added bonus of his hands being covered (can't poke, grab or put things in mouth), his feet being covered/slippery (can't stand or climb) and his visual field limited with the hood being on (decreased opportunity for mischief). I was really pleased with my solution until yesterday! Zeze figured out how to overcome the snow suit!!! He climbed the stairs, pulled up at the train table and hammered it with his fuzzy fleece paws and crawled over poor Noah who was buckeled into his infant carrier. I thought at least he couldn't get things into his mouth...yeah right! I saw him on his knees bowing down with his face to floor and he rises up with a toy gripped in his teeth and chortles with successful glee!! I laughed and laughed but I thought, "Oh crap! I'm a gonner." Still rushing to get Kai into his clothes and bring Noah out to the car I come back in and see Zeze face down on the boot mat. He rises up with a huge grin and his mouth rimmed with salty, sandy slush. He did it!! He accomplished everything I thought I had stopped him from doing. That kid really is amazing to me! He just doesn't quit!
This is Zeze showing his new mouth skill!

Happy Christmas!

It was a busy, yet wonderful Christmas season for us! The twins turned 1 (Happy Birthday!!!!), Kai was old enough to enjoy some of the fun things about the season (Merry Christmas!!) and we were able to travel to both of our parents' houses during Chad's week off from work!

Here are some pictures of the fun! The very last picture is of all the cousins from my side of the family.

Who's Crying Now?

So, today was Kai's 2nd day of preschool (the pictures are from Tuesday). The drop off went 100 times better than on Tuesday! I was prepared though for disaster again...had the stroller set-up outside the car (my arms are still sore from CARRYING both babies and ushering a sobbing Kai through the whole school and back) , got there early so I could park right next to the door before the parade of mini-vans arrived and took all the other near spots. (On Tuesday I was shocked when I arrived on time to find the parking lot full of idling mini-vans. I had to park so far away and couldn't even see the door anymore...not this time, boy...I learn from my disasters!) Kai and I stood in the rain for 10 minutes and I prepped him for what was going to happen. He got nervous as the minivan parade arrived and kids started pouring out of the side portals, but he held it together this time and watched everything unfold. Teacher Amy came and we chatted a bit and then I told Kai to take her hand and said good-bye and went to the car. He couldn't see me, but I could see him. I sat there and cried as I watched my 1st baby hold the hand of a lady that doesn't love him and watched her take him inside the building where he will learn to conform: walk in line, stay in circle, don't mix the paint colors....a few more tears....I'll get over it like every other mother before me has. They all tell me that I'll be delighting in the time of day when the babies are napping and Kai is at school and I have 2 hrs to myself. Today, however, I didn't want to let him go. At pick-up the teacher said he had a good time and did great. So, that's good!

On a funnier note:
I got this quote in an email forward today. It is still making me laugh!
"Inside me lives a skinny woman crying to get out. But I can usually shut her up with cookies." (Unknown)

Another funny thing: I saw a bus driver come out of the gas station today. She had on her neon green reflective vest so I knew she was headed to the empty bus that was parked over on the side. She was holding her hot coffee, walking in her trendy heeled boots, walking toward a bus that has gangsta tinted windows (seriously...what's up with the tinted windows on busses?) and she starts fumbling in her pocket for her keys. I looked at the bus and half imagined/half expected to hear "beep beep" and see the lights flash as she remotely unlocked the doors and shut off the alarm. It made me chuckle and when I told Chad he laughed really hard with his deep belly laugh. He said I do a really good "beep beep" sound and wanted me to attach an audio clip to my blog so you could all hear. I can't figure out how to do that though, so you'll have to imagine me telling you this story with my cool sound effect in place! :) :) (sorry Chad)

gangsta school bus