Seth knows no boundaries!

Seth and I ate lunch at McDonalds today after occupational therapy (which, by the way, went VERY well!). I learned from this little lunch date that Seth has no concept of boundaries. Three interesting incidents proved this:
1. Seth took off his shirt almost as soon as we got in the place. At least he kept his singlet and pants on, though!
2. After taking a drink from HIS cup, he stood up and leaned over to take a drink out of MY cup!
and definitely the best one is . . .
3. The people at the next table let a french fry fall on their seat and left it there. When the dad stood up to go fetch one of his children, Seth went over and ATE THE FRENCH FRY!
And here's a bonus funny: Seth didn't know where the trash can was; so when he was finished using his napkin, he took it out to the front counter by the cash register!!
There's always laughter when Seth's around :-)

look at Seth :-)

Seth has grown too big to fit into a onesie, but he still needs to wear a onesie. So I got him a singlet, and he loves it! He yells at me when I try to put his clothes on over the singlet, but he can easily remove the singlet. This would defeat one of the purposes of the thing -- to make his diaper unavailable for his curious hands. The second purpose is that spandex is supposed to help remind him to hold his stomach muscles in instead of having bad posture and hurting his back and his appearance. And then there's the bonus feature of always being ready to wrestle if the opportunity should arise :-)

Joel the math wizz

Today Joel asked me if he could please use a "normal" water bottle in his lunch box instead of a "sippy cup." It's not really a "sippy cup," but it does have Spider Man and a flip-top lid with a straw. So I understand the peer pressure thing and not wanting to be made fun of, but I wanted to know if he felt the same way as the boys making fun of his cup.

"Joel, do YOU like the Spider Man cup?"
"No!"
"Because those boys made fun of it, or because YOU don't like it?"
"I don't like it because I can't get all the juice out of it -- there's always at least one-and-a-half sixteenths left in there!"

That kid CRACKS ME UP!!!! (or as he said quite a few years ago, he really "gives me the cracks"!)
:-)

make the ride slow down PLEASE

I can NOT keep up with life lately!!!! There are just too many things to do in 24 hours!!!! Today I went out to Eagle River (an adventure I do NOT plan on attempting again any time soon) to check out a bead store that had a booth set up at the fair. Well, I LOVED IT! I only spent a little money -- could've spent at LEAST $10 more on a certain glass pendant, but decided to buy the $3 stone bead (and then spent that extra $10 at McDonalds). Here's what I bought for myself:


I bought the cord/ribbon necklace and the stone bead separately. I found the gold leaf in a bag of beads that a friend gave me :-) I think it turned out pretty nicely!


And here's my progress report on the lampshade:


When it's finished, the beads will (obviously) go all the way to the top of the lampshade (shading the light bulb :-). This is my stress reliever at the end of each day. I only get to string the beads for about a half-hour each evening, but I'm sticking with it!


Someday, I'm sure I'll look back at this time of my life and chuckle and even feel a little bit sad that it's over. But from the present vantage point, I really can't imagine that happening. Just like I can't imagine having enough time to sit down and read more than half a chapter at a time. But I can dream :-)

crazy busy

Yesterday was "one of those days" :-) I knew it would be a full day, but I didn't realize how busy. I started, of course, at about 5 a.m. and got the kids scooted out the door for school at about 7:30 -- they're getting so good at the morning routine (most of the time). I quickly got Seth ready for speech therapy and made it there on time :-) He's doing so much talking lately! Most people don't understand him at all, and I don't understand a lot of what he's saying; but at least he's trying to copy the sounds of speech!

After getting some gas (I'm appalled at the price of gas up here! I wish I had the nerve to put the van in the garage and ride the people mover!), we headed over to Costco. I've been putting off this errand for weeks because I don't like going in that place. The carts are huge (but really not huge enough for all the stuff I end up getting), the lines are usually long, and it's just a stressful experience. But I was down to five diapers, so it was definitely time to go. I thought I'd combine two errands into one and order my new glasses. Most years, I get new glasses sometime close to dividend time. I never got around to it last year, so my glasses are close to falling apart now. I'm one of the slowest glasses-picker-outers in the world, so an hour after we walked in there, I had picked out two pairs of new frames. I waited my turn to get to the lady at the desk who was having quite a bad day. She was called in to work early to cover for someone, there was a huge line of people waiting, and her printer quite working. She handled it very calmly, though. Anyway, when my turn came in line, the lady looked on her computer and told me that I couldn't order new glasses without an eye exam because my prescription ran out a year ago. BOOOOOO! I know when my eyes need to be re-tested, and yesterday they didn't! But I went over to the eye doctor's receptionist and asked to make an appointment. She said she could put me in right then if I had time. All-righty! The eye doctor confirmed what I already knew -- my eyesight really hadn't changed much, but he gave me my prescription and I went back out to wait in line again to order my glasses. Now I just have to wait a week or two for them to come in :-) When I was finishing my order, I told the desk lady that I really hoped her day improved. She said, "Well, it will -- it sure can't get much worse!" :-) Seth sat so nicely in that cart through the whole glasses place time and then through the whole shopping time. Very impressive for a four-year-old!!!

After spending 2 1/2 hours in Costco, we had just enough time to unload all our purchases, eat a quick lunch, and get ready to go to my class. I made it there on time -- I was on a roll for punctuality yesterday! I tried to soak in all the sign language I could in class, then picked up the kids, then got home to help Luke with his homework. Dinner didn't work out so great, but at least no one left the table hungry :-) After the kids went to bed, I got to study my sign language a little bit (I already feel like I'm falling behind -- I need to set aside more study time) and then go for a walk. It was pretty chilly outside, but at least it had stopped raining :-) I strung beads for a little bit, checked my e-mail, read a few pages, and finally got to go to sleep!

It's getting dark so early now, I'm thinking it's time to move to the tread mill on nights when I walk by myself. A few nights a week, a church friend and I are walking together which is nice -- I haven't had a walking partner for ages! I'm not sure, though, how much longer we'll be wanting to be outside for that long. It's getting colder and darker every day!

BUDDY WALK 2009

Today was the Down Syndrome Buddy Walk!!!! This is an annual event to recognize people with Down Syndrome, to show them support, and to raise community awareness of the love and respect that so many have for people like Seth. Today, I think there were 28 of us who took time out of the busy-ness of life to show that WE LOVE OUR BUDDY SETH :-)

I got up super early and made the kids all get up early to be able to help with the set-up. Anyone who knows me knows that this was quite an accomplishment -- I'm usually either late or running in at the last minute. Before anyone gets too impressed, we were too late to help with any real setting up; but we did help with a few little things. And being early, we were one of the first to get our new Buddy Walk shirts :-)


We had about an hour to play and run around before anyone else would get there.


Makenzie is SUCH a good big sister!


There was a bouncy blow-up thing for the kids.


Nearby was a beautiful maze-like garden.


The Szepanskis were the first to arrive. Daniel and Luke were in the same kindergarten class last year, and Elijah and Seth are close in age.


Matt and Tonya were Makenzie's and Joel's teachers last year.


Next came the rest of the family crew. Darryl's parents are up here visiting (getting to meet their new granddaughter :-) and were so nice to take part of their vacation to support Seth.


Jason's parents and brother came again this year, of course :-)

Aimee, Lauren, and Melissa came last year and this year brought Eric, too :-)


Seth had never met Eric, but was glad to see a guy among all the girls :-)


We were so glad to see some more students and another teacher from ACS came out: Jenny, Jennifer, Jimmy, Jay, and Steve. Jennifer gave Seth her door prize tickets, and we won a huge outdoor clock (which I've been wanting for a long time, so thank you, Jennifer!!)!


Robin and Laura know Seth from church and sometimes take care of Seth in the nursery. Laura also came last year :-)


Cindy, Tyler, and Alana are friends of the family, church friends, and almost neighbors :-) Cindy and I were shooing bees away from each other most of the time after the walk. Seth decided to do his elephant impersonation for this picture :-)


Here's the whole supporting crew for our Sweet Seth. Seth is up on top of Darryl's shoulders right in the middle.


After the walk, we enjoyed some pizza, chili, rolls, and fruit. Free food and the free t-shirt might be my favorite parts of the whole deal :-)

I can't even begin to say how much I appreciate all these people taking the time to come show their love and support for Seth! It's so very nice to know that people care!!

AMAZING events!

Some amazing things have happened in the last 24 hours! (amazing in michelle-world, anyway) Some are amazingly positive and some are amazingly negative. I'll start with the positives:

1. My kids cleaned up downstairs and then were nice to each other ALL THE REST OF THE DAY!

Here's Makenzie's new necklace that I made her. The center bead is what she picked out at a booth at the fair :-)


Luke wanted to show his photography skills :-)


and then he wanted a picture of him and Makenzie being nice together.


Can't leave Joel out, even if he is eating Cheez-its instead of joining in on all the hugginess :-)


2. We went shopping today at both Value Villages and A. the kids didn't fight at ALL; B. we found ALL KINDS of great stuff: movies (only $3 each), books (amazing deal: 69 cents each), a Scooby-Doo stuffed animal, Outburst Jr. game (which, in my opinion, is the best deal ever: $2). So now the kids are watching their new movies :-)

3. Three is a "blessed" number, right? Well this is the MOST amazingly positive event (possibly of the whole year!): Terra Bella bakery (on Dimond next to Bed, Bath, & Beyond) has gluten-free breads!!!!!!!!!!!!!!!! EVERY SINGLE DAY, THEY MAKE SEVERAL KINDS OF GLUTEN-FREE BREAD!!!!!!! To people who love to bake, all the exclamation marks make NO sense to you. I, however, do NOT love to bake and will be treating myself OFTEN to coffee and BREAD that WON'T make me get blisters, nausea, or diarrhea!!!!!!! I pray God BLESSES whoever came up with the gluten-free sales plan at Terra Bella and whoever is actually baking the breads. Life is SO much nicer with BREAD! Today, I got a regular loaf of bread, a loaf of cinnamon bread, a piece of zucchini/pecan bread, and a banana cupcake. I ate the piece of zucchini bread and it was AMAZINGLY AMAZING!!!!!

4. This morning we went to Seth's 4-year-old checkup and found out that they blood-taking ladies did, in fact, get enough blood for Seth's tests. He seems to be completely healthy. The dermatologist yesterday, though, confirmed that Seth does have psoriasis and it's not the temporary kind. We're working hard to get rid of this round; and then we'll be working the rest of his life, apparently, trying to prevent any more outbreaks. My brother-in-law's mother gave me some encouragement from her experience that after we get rid of the sores he has now, it probably won't be too difficult to prevent any further flare-ups.

5. This is the amazingly negative event, and it makes me so sad that I'm getting a headache from trying not to cry. Our phone rang at 2:00 this morning. My next door neighbor was calling to tell me that the house right behind us was on fire. Then a cab driver rang our doorbell (several times very quickly so that we'd be sure to wake up, which would've been very appreciated if we hadn't already been awake) to tell us the same thing. We went to the back deck and saw that, yes indeed, flames were shooting out of every part of the four-plex behind us. The fire fighters did an AMAZINGLY amazing job of containing the fire, though. I do NOT know how they kept that fire from jumping to my other next door neighbor's giant cottonwood tree. It almost TOUCHES the house that was on fire! But they kept the fire contained to just the four-plex. All of the people got out safely, but they lost everything they owned. One of the tenants was a woman from our church. She grabbed her purse and her laptop, but lost everything else. Of course, the church and her employer are gathering donations to help her re-buy as much as possible, but the devastation of this kind of tragedy just takes my breath away! From what we've heard, a gas leak caused the fire.

In the bottom right corner of this picture is our shed in our back yard! And look at that stupid tree!!! I really don't know how they kept the fire from going to that thing!


Praise God that no one was hurt!

another Seth update

Seth went to the allergist today. Usually, this appointment takes 30 minutes at the most. Today we were there for an hour and a half. The doctor found an infected boil, so she needed to drain it and get a culture to run tests. The lab closed early for some reason, so she called the main hospital lab, irritated, and told them to get over there and pick up the culture because she was NOT going to send me all the way over there. We had to wait in the office to make sure they didn't need anymore insurance information from me. One good point about the long wait, though, was that the allergist got Seth's dermatologist appointment moved up to tomorrow or Thursday (instead of the end of October). She's pretty concerned that Seth's psoriasis hasn't gone away yet. On the way home, we had to get yet another round of antibiotics and a stronger steroid ointment to put on his psoriasis. We'll see what happens next!

my amazing Seth

Apparently people with Down syndrome have some trouble learning to speak coherently. Seth sure has! His most understandable words have always been "Dad" and "Mom" -- he says those very clearly. He can say other words, but usually not correctly so that his speech therapist and I are the only ones who understand what he's saying. One of most difficult things for Seth has been saying the first letters of words. Instead of saying "cow," he says "ow;" instead of saying "moo," he says "oooooo." A lot of the time he gets close enough that I can decipher, but other people are looking to me like he's speaking a foreign language and I'm the interpreter. Yesterday, though, Seth clearly said "KEY" -- talking along with "Blue's Clues" :-) YAY SETH!!!! One more baby step on the road of development :-)

While I'm on the topic of Seth, I'll do a little update on him in general. He's still seeing his speech therapist every week and his occupational therapist every week. He still has psoriasis, so we are going to a dermatologist at the end of October (the first available time -- one of the negatives of living in a secluded place, not enough specialist doctors to meet the needs of all the people quickly). After trying the foods that he was allergic to, he is no longer allergic to beef, turkey, or oats, but he's still VERY allergic to green beans (any more than two green beans a day gives him pretty severe stomach cramps). I'm not sure if he is or isn't still allergic to peas because life has been CRAZY the past few months and I never really finished the whole "re-introduction process" for peas. He doesn't seem to be allergic to them, though. He's still sleeping in a crib because he has absolutely no concept of authority -- the fact that he really is expected to obey when I tell him to do or not to do something. So it's safer (and easier) for him to sleep in a crib. He's slowly learning to feed himself, using a fork or spoon. This is a very slow and difficult process for him to learn and for me to watch and teach (that touch of ocd in me really flares up at this topic). Overall, Seth is doing GREAT in every area of life and is a constant source of smiles and laughter for me!!!

(by the way, if you happen to be able to see the date and time on that picture, it's not correct -- he woke up early today, but not THAT early!)

'Tis

I have been trying to find enough time to read for weeks now, but seem to only find a few minutes here and there. So I made a serious plan to finish this book: I got up at 6 a.m., got myself all ready for church, got everyone's milk and minerals all mixed and sitting in the fridge, emptied and re-filled the dishwasher, and THEN (finally) headed out the door to get a pumpkin spice latte and to sit in Carrs and finish this book. It's the second book about Frank McCourt's life (I wrote about the first one, Angela's Ashes, a few weeks ago). In this memoir, he wrote about trying to make his way in America. Overall, the book made me a little sad because he just couldn't quite seem to overcome his childhood and "family curses." In my normal reading repertoire, the main character would valiantly conquer all hindrances and live up to his fullest potential. But this book wasn't a work of fairy tale fiction; it was a realistic account of this one man's life. And this one man had a few too many obstacles for a regular human being to hurdle, especially when he didn't have the foundation of faith to help him. His experience had been that the church was full of hypocrisy, and he really didn't have much desire to be involved with God in any way. He seemed to believe that his life and sins had disqualified him from God's favor, and this belief made him both angry at God and frustrated with the "hand he'd been dealt." He did, however, manage to rise above his upbringing a few steps, keeping regular jobs and getting a college degree. I'm hoping that his third book, which I hope to start reading this afternoon, will tell about a change of heart toward God.

oh, and (p.s.) he continued to use my new favorite phrase about "not giving a fiddler's fart" about anything :-)

and one more good quote: "good taste is what pops up when the imagination dies." i love that one!

4-year-old tests

I'm still shaking from this morning's ordeal! Seth had to have some tests done at the hospital today. First we did the x-rays to check his neck bones. I don't remember what the problem is called, but some people with Down syndrome have a problem with their necks. Seth did a pretty good job with the x-rays, considering we had to "sit" (I'm using that term VERY loosely in Seth's case!) in the waiting area for about 45 minutes.

But then we had to get the blood tests to check his thyroid and to check for celiac disease. People with Down syndrome are at a higher risk for both thyroid problems and celiac disease. Seth is doubly at risk since I have celiac disease. The blood-drawing ladies (I don't know their technical title) couldn't find a good vein, so they gave it their best try: three pokes and a lot of wiggling the needle around. I'm not sure that they got enough blood for either of the tests. We'll see, I guess, when we go to the pediatrician next week. We didn't have this problem when he had these tests two years ago.

Seth was VERY brave all during the needle business. He didn't yell or scream, and he barely cried. I think I cried more than he did. He did say "Ow" very clearly a couple times. He got a toy from the x-ray technician and then another one from the blood-drawing-ladies. He was also pretty happy with the bandages all over him.

p.s. thanks Richard

p.s. Thanks to my brother-in-law Richard for the great pictures from the fair!! He made a cd for me as soon as he got home from the fair last night and rushed them right over as soon as he could. I REALLY appreciated it (but forgot to say that in the fair blog)!

AK State Fair

I have diligently avoided the fair for about nine years, but felt pressured to let Seth enjoy the experience this year. Seth goes pretty much no where without me, so I had to go, too. I was NOT looking forward to it in any way at all, but actually THOROUGHLY enjoyed it! I was expecting to just follow behind everyone, pushing Seth in the stroller, taking pictures of the kids as they rode rides and played games, but found myself participating in the fun because it really was fun. We were all smiling and laughing almost the whole day.

First the kids rode some rides. Amazingly, all of the children behaved nicely the majority of the time and rode some of the rides together.




I was afraid that Seth would be stuck in the stroller for all those hours, but there were toddler-appropriate rides that he LOVED! I tried three times to get a good video, but had to settle for three short not-so-good videos: part1, part2, part3 :-)



This was the best ride in the whole place: the Cliffhanger (it really should've been named the Hang-glider, though). Makenzie loved it, Luke liked it, Joel felt woozy and nauseated by it.


This is one of the cutest memories of the day: Luke helping Seth get on the "baby" ferris wheel . . .

. . . and making sure he stayed seated, nice and safe :-)


Then Makenzie decided that she wanted to ride this ride again -- with me! Since we were full-body-boxed-in no-chance-of-moving-in-any-way, I LOVED it!!!!!



Next it was time for some games. Seth went "fishing" for a duck . . .

. . . and won a penguin.


When the older three kids saw how easy it was to win something, they all went "fishing," too, and each won a penguin.


After a couple more games, Joel, Makenzie, and Luke rode the big ferris wheel. Makenzie wanted me to ride this one, too, but I had to draw the line somewhere :-) A rocking chair suspended millions of miles off the ground is NOT my idea of a good time! But the kids liked it.



So up to this point, that ferris wheel was the most stressful event to me -- Luke up in the air, not strapped in. I was imagining all kinds of ugly possibilities. But they made it through the ride with complete calmness and not even a hint of danger. Then the bottom dropped out of the safety tank! Makenzie, Luke, and I went into a little shop to look around. Luke told me that his feet were hurting really badly, so I told him to go ask Dad (who was right outside the door with the rest of the family) if Seth could walk for a while so that Luke could be in the stroller to rest his legs and feet. When Makenzie and I came out of the shop, we all started to walk. Two steps later, I realized that Seth was still in the stroller. WHERE'S LUKE??????? We thought he was with you. I sent him out to you to get in the stroller. LUKE?????!!!!!!! To make a long story short, Luke had walked out of the shop and turned right. He didn't see the rest of the family because they were to the left. He walked down the road quite a ways, decided he'd better turn around and go the other way because he hadn't seen the family, and was on his way back our way when Rich and Richard saw him. Jason was down the road the other way looking. Sandy was looking for the "lost child" authorities. Joel, Makenzie, Seth, and I were sitting outside the shop waiting. As soon as we saw Luke walking towards us, Makenzie and I started crying with relief and the realization of what COULD have happened. When I could loosen my hug on Luke and stop crying enough to talk, I asked Luke if he'd been scared. "No, Mom -- I'm a tough one!" Oh yeah, silly me -- I forgot. He told me his detailed plan for defending himself against kidnappers. I'm pretty sure no one would survive a Luke-attack, so maybe I don't need to worry so much about him (and, of course, he'll be on a child-leash next year!).

Our next stop was the hoola-hoop pile. Makenzie seems to have a real hoola-hooping talent (click for a little video). Joel and Luke were a little envious.



At the entrance to the animal-petting barn, there was this funny tractor thing:





Joel, Makenzie, and Luke fed the animals. Makenzie and Luke didn't really love that activity, but at least they tried it. Joel was less grossed out by the animal slobber.


Seth LOVES animals as long as they're on tv, in books, or stuffed. He didn't go inside the fence :-)



We found a free ride :-)



The kids wanted to ride the Cliffhanger with me again, so I went with Makenzie and Luke . . .


. . . and then again with Joel. After that third time on that thing, I was feeling a little bit queezy.


Seth got to ride the little train right before we left with our caramel apples :-)

Except for the "Lost Luke Scare," this was one of the best days with the kids EVER! I'm glad I gave in to the pressure :-)