Jack is *gulp* 10. TEN!!

My baby. My sweet, little, "I'm gonna eat your toe-ies" baby boy is 10! Two whole digits!

I can't believe it.

He still loves Toy Story and his favorite buddies are Woody and Elmo. He still hangs out with his blue blanket and it goes to bed with him. He wears his glasses daily, without complaint. He mostly uses the bathroom appropriately, but has wet accidents very occasionally and #2 accidents about the same. He's usually wet in the morning and wears a pull up every night. He writes letters fairly well but still doesn't read or write words without mimicing. No math either. He loves kisses at bedtime but tries very hard to pretend he doesn't. He likes school but his behavior has gradually gotten more non-compliant. It's very hard to get him to do anything that isn't his idea.

I think, at the time of his birth, I was still coming to grips with the reality that we would have a child with special needs. I had no idea how much I would love him. Deep in my soul, I need him like I need air, love him. Even when he is at his worst behavior-wise, one sad look and I absolutely melt. It's pathetic, actually.

I will add pics to this post. Didn't get any decent ones yesterday. Hopefully this weekend I will get some good ones!

Frozen on Ice

We were very lucky to have the opportunity to go see Frozen on Ice! Allan and I took Madelyn, Jackson, and Dasha. I had heard that since it’s a Disney show all the little girls dress up like their favorite princess so of course Dasha had to have something cute to wear! I didn’t want to spend a bunch on a costume because I didn’t think she would get that much use out of it. I found a pretty dress that she can wear later as a sundress but since it’s winter I got some cute leggings to wear underneath (she already had a cute white shirt).

Jackson got a cute Olaf shirt. Madelyn gave our little princess a mini makeover with some pretty blue eyeshadow to match big sis.

(Notice the lack of front teeth! Dasha lost one last Mon night, the 23rd, and the one came out Thurs night, the 26th!) Some of the outfits that little girls showed up wearing were AMAZING. M and I both kept pointing out different dresses we saw.

We bought the tickets months in advance. So of course, the day of the show turned up and cold and wet and we had a lovely snowstorm as we were driving downtown to get there!

I was snowing pretty heavily by the time we got there and we parked a couple of blocks away so by the time we got into the big auditorium we were a little tired and kinda wet and pretty cold. We warmed up and found our seats and everybody was pretty excited.

We got to see Mickey and Minnie Mouse, Buzz and Woody, Nemo and Dory, Snow White, Cinderella, Ariel, and their princes along with lots of other fun and favorite characters. We saw the story of Frozen, acted out on skates on ice! There were remote-controlled props and amazing lights. We loved every minute! We had a magical experience and I think I spent as much time watching my babies have a great time as I did watching the show. It was awesome! I spent a lot of time thinking how much my mom would’ve loved it too.

Happy kids, ready to head home!

New Stuff

There's LOTS of stuff that's going on, that's happened, that I'm thinking about, that will most likely go unblogged because life has been busy.  Catching up here might very well be impossible!  But I can try to post a few catch up things so here goes!

Andrew - He's still selling shoes part time and going to college locally.  He's going to be attending UMSL (University of MO at St. Louis) for the next few semesters so wishing luck to him!  He bought himself a pretty little car last year:

Madelyn has had a super busy couple of years.  She danced with her high school dance team her last 2 years in high school and had a blast.  She also worked at a local pizza place and joined the winter drumline team at school her senior year.  She graduated last May with honors and went off to Truman University in Aug.  She and boyfriend Charlie will celebrate dating for FIVE years this coming March!

Tyler is now a sophomore in high school!  He's addicted to computer games but he gets good grades, is a great big brother to Jack and Dasha, and helps me out whenever I ask.  Nothing wrong with that!

Jack and Dasha.  They are both sweet, and subborn, and good little kids.  They are together at school and enjoying their teachers and classmates.  They aren't making the progress I would like to see but there is some.  Last year they both were in a dance class and had a big recital the day before Madelyn graduated.  We decided to take a break from that this year but we are missing it.  Dasha started cheering through the Upward program at a friend's church.  Last Sat was her first game to cheer at and I think she had fun!

So many more things to write about but I guess there will have to be another post!

Tonight we eat banana splits

Today Jack got off the bus.  He came in, took off shoes, put away backpack, and went to the potty, as usual. He was wet, as is common.  After clean up, he seemed very reluctant to get re-dressed.  So I put him back on the potty.  He sat and sat and sat and sat.  And got up.  And hallelujah - there was poop, right there, WHERE IT BELONGS. One giant step forward in potty training.  Tomorrow, there will be 2 or 3 or maybe even 4 steps back.

But tonight, we eat banana splits for dinner!!!!  Jack is sooo excited!

Mother's Day

As usual, my Mother's Day mostly sucked. But this year (finally! Only took me 20 years) I was expecting it so there wasn't much disappointment. The only time I got to play the Mother's Day card was when Jack announced he pooped in his pants and I was like "Mother's Day! I don't have to clean him up!". But as it turned out there was no poop so I kinda feel like I wasted it. I did get a Spongebob card that the kids' signed and it was cute! Allan made breakfast (like usual for a Sunday) and added hash brown casserole which was delicious. Andrew and Madelyn both made a point to wish me Happy Mother's Day which was nice. I know they love me. All of them.  I just think of all the times I try to make special days special for them - birthdays, holidays, special occasions. I say it would be nice to get a gift that I didn't pick out or a dessert I didn't make. But no. Never happens.

And I don't even have my own Mom to celebrate or commiserate with.

No bitterness here. Nope, none at all.

Down syndrome

(Written waaaay back in March when I was getting ready for World Down Syndrome Day on 3-21!)

Do I hate Ds?

Do I consider it a blessing?

Do I care that my children can’t run fast?

Do I care that they will learn slower than their peers?

Do I care that they share certain physical characteristics with other individuals, around the world, that we aren’t even related to?

Nope.  (Not always, anyway.)  However,

The problem is :

There are some health conditions that people with Ds can be more suseptible to (we are lucky – our littles are very healthy with the exception that D take a pill daily for her thyroid).

Their mental cognition is slower, so right now I have a 7 yr old who isn’t potty trained (we’re getting there, it’s just taking a loooong time and I’m impatient) and the 6 year old is doing great except at night.  They don’t read yet.  And the big problem - they run away from me in parking lots and stores and EVERYWHERE.

I am ready for them to be more like typical 7 & 6 year olds, in that I wouldn’t have to worry about them walking out the front door and away from the house.  I would like to not have to hold their hands when walking out in public every second.  They are getting bigger and stronger and more resistant to hand holding but seriously, they run and run fast if I let go for a second to open a door or get my keys out of my pocket.  It’s hard to do things, go places, run errands with one of them and nearly impossible with both.

And I want them to read and write, be able to add and count money and tell the time.  I’d like them to be able to live as independently as possible when they grow up and those skills are essential.  Maybe they will; It’s impossible to know right now.  Right now they don’t have these skills. 

We are seeing progress; it’s just slow.

Would I change them?  Trade them?  Wish them away?

Heck no!  No, no, no!  I might wish away the cognition issues but overall, I couldn’t love them more.  When we have a fit, or something takes a long time (like putting on socks) or they are picky about a shirt or a show, I have to remind myself that they are little kids!  My older kids certainly had their own opinions too.  So I feel lucky, because I have my older kids, who threw fits, and had opinions, and who didn’t (don’t) always make the best choice, and they are turning into awesome people.  So I remind myself that we have plenty of time and lots of these issues are people issues, not only Down syndrome issues.

Puppy!

Occasionally I will look around craigslist.  You never know what you might find that you need!  I generally look at dressers and tables and cars.  Awhile back, I found myself looking through the pet ads, even though most of them generally make me sad.  When I decided to switch Holly’s dog food I did a lot of research on what to get for her and found out she’s a senior dog :(.  She is 12 but still playful and active.  Anyway, that’s what started me looking at dogs – not so much to get one, just to look like I do at cars.

One night I was scrolling through the ads and a picture catches my eye (I wish I had saved it.)  I showed it to Andrew and Madelyn.  The eye catching part was that this puppy looks just like Holly did when I found her!  We all agreed on that.  So I called the lady and asked what the adoption would entail (she runs a rescue) and among the details, she said she could meet us at a park so we could check out the puppy in person.  I asked Allan if we could and promised we would not bring home a dog without his permission – and I truly meant it.  Off we go to the park and every one of us fell hard in love with this crazy bouncy ball of busyness!  She’s so stinkin’ cute!  We call her Luna (Andrew because he has a fascination with all things universe-related and me and M because of Luna Lovegood, you know from Harry Potter!).

Meet Luna:

Isn’t she just so precious?!?!

That was months ago, like 9 of them!  Yep, I am seriously behind on posting but trying to catch up.

Luna is now a year old, and house trained, and completely awesome!  We are still working on basic training, like come, and stay.  She doing great with sit and not chewing on non puppy toys.  She was so hyper and crazy I have decided it’s just going to take time.  But she’s so dang cute and cuddly and smart.  She’s a great dog!  As far as being Holly’s best friend, not so much.  But they get along okay so I’ll keep trying.

They suffer together (hahaha),

and they share my lap occasionally.

About Andrew…

This post really should go on his own page.  Maybe I’ll move it later.  Can I do that?  Anyway;

Andrew got a new car.  He bought it with his own money.  It was a little bit of a debate – should we use that money for this car or save it for college, which was it’s purpose.  But we decided that since he will be going away to college and the Camaro isn’t long distance load ready, and he had the cash to pay for the car (no loan), and this car will last him through college at least, it was a good idea to do it.

Since we are car people and Allan is THE car guy, we always have specific requirements for a vehicle.  This car meets them all :).  (I won’t bore anyone with the list haha.)  And also important, this particular vehicle was on Andrew’s list as a car he would drive!

So here it is -

Pretty right?  1999 Dodge Avenger.  Andrew is very happy with it.  Like I said, this car was on his short list of “what I would drive if I could (realistically) pick anything”.  It was even first, I believe.  There’s a whole ‘nother “the sky is the limit” car list, of course.

It’s a little bit of an adjustment to stop driving the Camaro.  He is soooo my son.  I’d still be driving it too.  Love that car.  It wants to go!  Someday, it will have all it’s “issues” fixed and I WILL drive it again.  Anyway, there is this road.  It’s fairly new, very out-of-the-way, not much of anything on it, very untraveled.  So it’s almost a requirement to go very fast on it.  Very fast.  Even in the mini van, I can’t resist.  So even though my outside voice says to Andrew “don’t go too fast and get a ticket”, my inside my head voice says “how fast did you go today???”.  The new car has been broken in lol.

New Dishwasher!

This is my new dishwasher!!  After a year and a half of hand washing all our dishes, I bought a new one and Allan installed it, all in less than a week!  It's quiet. So quiet. I loooooove it!

I mentioned to my oldest son today that I was born when my mom was 26 and he was born when I was 26. So I am now the age my mom was when I was the age my son is now. Got that? Blew both our minds for about half a second, then I started thinking how different I am at this age compared to how my mom was. There are a lot of similarities too, but the differences are what come to mind first. I wear jeans; don't think she ever did. She hurt her back at a relatively young age and wasn't able to do much physically after that with us; I try to take walks and play at the pool. But I know she loved me just as much as I love my babies, and that is a helluva lot.

Dance Recital

Waaaaay back on June 1 (see I’m trying to catch up here) Jack and Dasha got to participate in a “Dance Concert”.  They had been active in a dance class since Aug., and this was their chance to SHINE (the theme of the recital).  I wasn’t sure how it was going to go but went to the rehearsal with high hopes.  I came home from the rehearsal with prayers on my lips and dread in my heart (that means it didn’t exactly go great).

That was Dasha’s expression pretty much the entire time she was on stage!  She just couldn’t stop looking surprised; it was really funny.  And Jack couldn’t stop looking at everyone else (maybe that’s because his genius mommy forgot to bring his glasses and he couldn’t see!).

 

(Post recital cuteness!)

The actual recital went great.  The kids did their dance (Dasha only tried to leap off the stage once!) and they received thunderous applause!  The class was made up of kids with specials needs and each child was assigned a “helper” to ensure no one wandered off  and remind the kids where they were in case they forgot :)  Jack’s helper was a special girl named Madelyn.  Yes, big sister Madelyn!  After the recital we took ourselves out to lunch to celebrate.  It felt like a special day!

Pity Party

Fun post coming up - we have a few good things to report, but today is one of "those" days and I want to get it out there; in hopes of course of finding some sympathy, support, understanding, whatever. I love my kids - all of them. Jack and Dasha have an extra portion of my being, maybe it's protectiveness, apprehension for their future, whatever, but it's different from how I feel about my big kids. I will always be so very grateful to have been given the blessing of Jackson. It still takes my breath away sometimes that my family was chosen to be the guardians of such a precious gift. I've learned so much, met so many awesome people, had so many opportunities to grow - all because of him. Even Dasha is here because he got here first. We knew he had Ds before his birth, courtesy of an amnio. I loved his baby toe gap and little almond shaped eyes from the second I saw them. We already had our adjustment period - his birth was pure celebration. He grew and met milestones later than typically developing kids but he entertained us, and was always so sweet and precious. But the other day it hit me - my "babies" aren't babies anymore. People don't gush over their cuteness as much anymore. They're 6 1/2 and 5. The delays are more obvious. I'm starting to get frustrated with things. Potty training might actually kill me. We've been working on it (really trying) for a year and a half. We've been telling Dasha for at least that long that she may not remove every DVD from the shelf every day. (She did it to books too but I actually turned the bookcase around so they can't even get to their books.) I'm frustrated with the complete lack of progress in things we've been doing for years. They ARE learning; but the things I have been telling them to do/not do on a daily basis, multiple times a day, is making me crazy. I'm out of patience, I'm frustrated, I'm tired of getting mad at my kids. I don't have friends to vent to (there are a few but none that I talk to on any kind of regular basis), my family doesn't get it, my husband is completely clueless, unsupportive, not the guy I married. He doesn't want to hear about it. He doesn't help. He doesn't try to do things in the different way we need to parent these little ones. My fb seems to be the place I feel most comfortable and even then I don't do a lot of sharing. It would be awesome to have a break, get away without the responsibility for a night. But that doesn't happen. Ever. 99% of the time I really am okay with that; I miss them sometimes when I'm gone for a few hours. But right now, this summer, I'm burned out. It's hitting me that this is reality - they need to be supervised constantly. I can't go to the bathroom, go check on laundry, or make a phone call without someone to watch them. It's hard to take them places. They run. I have to have a hand on them AT ALL TIMES. It makes something as simple as going in to buy a soda by myself with one nearly impossible; with both I don't even bother thinking about it. I may add some specific things that they do later as I think of them. I'm a bit overwhelmed wallowing in my pity party today.

Where to begin…

We had a snowstorm on Madelyn’s birthday.  Although it was a huge inconvenience, it was beautiful!

Less than a week later, Easter.

That was the best pic.  Sad.

Less than a month later, Madelyn went to prom!

Jackson’s art teacher picked one of his projects to include in the annual art show at an actual gallery :)

(His is the picture of the chicks.  They used little sponges.)

We had end-of-the school year stuff – last concerts, field trips, parties, and holy cow – Jackson had kindergarten graduation!  Cute, cute, cute!

The best teacher IN THE WORLD!!

On the very last day of school (making a very rare blog appearance) TYLER graduated 8th grade!

This means we now have a high school freshman in da house!!  Even though I don’t post much about this kid, I love him to pieces!

And coming up in it’s very own post, the Jack & Dasha dance concert!  The day after that we finally began our summer break.  Whew.

Pretty Day!

This may actually be our 3rd overall nice-for-playing-outside day! Clearly, the kids are so unhappy at being forced to be out in the sun! I guess it's time to think about shorts and sandals and *gasp* swimsuits!

World Down syndrome Day!!

I already posted the lists of 21 things about my sweet kiddos.  One of the coolest things about the the IDSC is the video they made for World Down syndrome Day!

Please check it out!

21 Things About Dasha

1. She’s a people pleaser.  She is never more happy than when she’s “helping”.

2. She has no words.  Lots of sounds, some specific, & lots of signs.  Some sounds are very purposeful.  But no actual words.

3. Dasha understands everything.  I can say “go get your shoes” or “go get Jack’s drink” and she does.  M thinks she will be a waitress specializing in beverages. 

4. She has a recent obsession with combs.  We keep several in a drawer in the bathroom and she keeps getting them out to play with.  It makes her dad nuts.  Crazy girl.

5.  She loves movies.  For at least 10 mins.  Sometimes she’ll watch longer; sometimes she must run around and then watch; sometimes it’s over after 10 mins.

6. Dasha is a mess.  She’s like pigpen, from Charlie Brown.  She always needs to be washed; hands and face especially.

7. Dasha was adopted from a Ukrainian orphanage.  She’s been home 2 years and 3 months.  It’s easy to forget that she wasn’t always here.

8. She’s still learning to play with appropriately with toys.  She doesn’t throw things as much anymore, but imaginative play is still a work in progress.

9. Her hair was super short when we brought her home and it grew and grew.  We cut it into a really cute bob just over a year ago.  It’s now almost that long again (grows fast) and I’m trying to decide if we should cut it again or let it grow through the summer.

10. Our girl loves water.  A big swimming pool, a bathtub, a sensory table at school, a sink full of water; doesn’t matter.

11. Her brother has a particular blue blankie that is his favorite.  So of course, we had to get Dasha the pink version of the same blankie.  Yay for me – she loves it!  It goes to bed with her and in the van and

12. Dasha loves books.  Sometimes she even looks through the whole thing.  Sometimes she just wants to see how many she can get off the bookshelf before I stop her.

13. Dasha is a runner.  We have to hold her hand very tightly or she will run away (and she is crazy quick).

14. She will be in kindergarten next year.  We haven’t had her transition meeting yet, but since she’s behind Jack by only a year, I’m comfortable with the process this time.  Looks like Dasha will even be in Jack’s class.  I hope that will be a good thing for both of them.

15. Dasha is completely incapable of being still.  She is in constant motion.

16.  She loves her brothers and sister.  Loves.  If one of them comes with me to pick her up from school, I am totally chopped liver.  If we all sit down to watch a movie she is all over one of the big boys.  It’s quite adorable.

17. Dasha loves to hug people.  It’s awesome that she’s so friendly.  Unfortunately, she hugs everyone, including strangers at the quickie mart.  It’s not always appropriate or appreciated.  We’re trying to teach her to not show affection indiscriminately.

18. Dasha is a very busy girl.  She doesn’t sit still for long.  Even at dinner.  We still buckle her into her booster seat at most meals so she doesn’t take a walk in the middle of a meal!

19. Food.  Dasha loves food.  She’s doing great with a spoon and fork and most finger foods too.  Unfortunately, our little miss came home from Ukraine with many eating issues, one of which was the she would stuff as much food in her mouth as possible, thereby leading to many choking incidents.  We learned to only give her a little amount at a time but we’ve been able to increase that in most cases.  However, gold fish crackers seem to be a “trigger” food.  We still have to watch her with these.  Dry cereal, oyster crackers, other similar stuff is fine, just not gold fish.  Weird huh?

20. Dasha seems to be an animal fan.  She loves our dog and any other animal she encounters.  We have to watch her though – she can be very enthusiastic which can translate into not careful or gentle enough sometimes.

21. My last thing for this list is an odd one.  Dasha loves music – not odd.  However, not too long ago we heard a russian-ish version of Jingle Bells and it completely freaked her out.  Completely.  Freaked.  Her.  Out.  We still aren’t sure why.  She’s been home over 2 years.  Weird.

So that’s our girl.  Much loved, much enjoyed, much cherished.

Review – 21 Things About Jack!

Here’s the link to Jack’s 21 things:

http://capnjacksadventures.blogspot.com/2012/10/21-things-about-jack-2012.html

Who I Am

The IDSC (International Down Syndrome Coalition for Life) is running a campaign in honor of World Down syndrome Day called “Who I Am”.  It’s all about individuals with Down syndrome, and how they are indeed, individuals.

Since there are 2 little cuties with Down syndrome in our house, they tend to be lumped together a lot.  I’ll try to separate them a bit for the next few days at least.  It’s been a fun thing, in blog land, to make a list of the top 21 things about your person with Ds in October (Down syndrome Awareness month) or on March 21 (World Down syndrome Day).  Since Oct. is the month of Jack’s birth, I usually do his list then.  And Dasha’s birthday just happens to be on Mar.21 so I’ll post her tomorrow, along with a link for Jack’s last one.  And I’ll be looking for cute pics to post too!

Snow Day – part deux

Madelyn set up our redneck snow slide (complete with tree truck sections to prop it up!).

 

Andrew decided to try a snow angel and got a little “help” from the littles!

My little snow princess :)

 

They buried Andrew (at his request).

Jack loved that!

 

Then he decided to bury himself in the snow!

 

Queen of the snow pile (yes, that’s M) and Ty checking out the snow slide from the deck.

They lasted longer than I thought they would out there, and after all the playing, Andrew & M shoveled the walkway and the driveway!  Then we all enjoyed hot chocolate and movies.  I love snow days.

Snow day!

When we went to bed we already knew school was cancelled. When we got up, nothing. It was cold but not super cold, and there was nothing on the ground. Honestly, I was fine with that. A day to sleep in and chill and do whatever? Okay! Now, things are much more snowy out there (pics later) but things are awesome in here! Look at my cuddling girls, so sweet.