Unringing the Bell

Spring Rainer

Georgia had already asked to go to bed, as is her thang on school nights, but Rainer wasn't quite ready to hit the hay. So, he did what everyone ought to do when they don't want to sleep--put on his super hero cape and ran around outside!

It was a perfect spring evening, not too hot, slightly breezy, the neighbors all out on their porches gabbing. Others stopped by to chat while Alex played ukelele on the porch. We met another little boy who lives just up around the bend who is only a month younger than Rainer and has a similar name (Ronan). One of our friendly neighbors offered us coupons.

Busy days, these, so it's nice when we can catch a break and hang out outdoors in the evening.

Our humble hero.

Super saturated.
Work it, Rainer!

He went that-a-way!

"Come on! Let's go!"

Maybe if I run REAL fast I will fly!

Didja' see me catch some air??

Even super heroes have to stop and smell the flowers from time to time!

Brother Keeper

The kids don't always get along. Not by a long shot. Georgia is often the instigator, she loves to get Rainer's goat. He'll be on the trampoline, for instance, and she'll just come right up an sit real close to him and wrap her legs around him. This drives him bonkers and she LOVES it. She just laughs the madder he gets! Little stinker.

A common refrain in our house is, "No, Georgia, stop! Don't do that!"

I am not trying to say Rainer is never an instigator. Oh, no, he is a toy swiper, big time. But, when that happens there's less actual commentary about it.

As much as these two bicker with and bug one another, though, I can see more and more what a strong bond they are developing. They seek each other out and Rainer, I have to say, is getting pretty protective of his big sister. I mean to say he looks out for her. I don't think she particularly likes it right now, and some might call it tattling, but there's something in his tone when he talks to her that really makes it seem more like care and concern.

For instance, Georgia has a habit of chewing on the straps of her chair. We discourage this because we don't want her to wear them out and there are more appropriate things she can chew (like her chewy tube). This morning Rainer saw Georgia chewing on the straps while I was in the other room and instead of coming right in, I listened to how he handled it.

"No, Georgia, don't chew that. Not supposed to chew dat. Georgia, stop chewing..."

I was going to go in because although Rainer was using a gentle tone and not yelling or reprimanding I was getting a little uncomfortable with all the "no" and "stop." I know this is language Georgia gets, but she needed an alternative and not just a lot of "noping," as I call it. (Although I WILL say, one of the awesome things about other kids is they just say it like it is and don't get into all the psychological language of it all, whichis surely going to be helpful at tomes.)

I was thinking all this when Rainer apparently decided the same thing and said, "Georgia, you need a chewy? You need a chewy, Georgia?"

He said it with such concern and sweetness, I am writing this from my mush pile on the floor.

Georgia IS the big sister, but she's going to need help in this life. I am so glad her brother seems to be willing to step into that role.

Need to Work On This

This morning at the gym a little girl came up to me in the childwatch and indicated toward Georgia and said, "She won't talk to me." I think I said something like, "Well, Georgia doesn't really talk to anyone very much just yet. She says some words and uses sign language, but she can understand you." Driving home, I was thinking about it. I don't think this was a TERRRRRIBLE response, but I wish I had said something more positive. Something like "Georgia is working on talking more," instead of she "doesn't." I think if I reframe things regarding Georgia more positively it will help her own self-perception, MY own perceptions, and the people around us's (how to you pluralize that?) perceptions. This is a small thing, but I would really like to work on reframing the way I speak about Georgia, but also about many, if not most, things in our lives.

After my class, I went to pick up the kids and for the first time in two years I was given a "bad" report. I guess G pulled a girl's hair. I am not totally surprised (more surprised I haven't been told something like this sooner), G sometimes pulls R's hair, and after three days being spoiled by the grandparents who were visiting, I am sure she is having some trouble getting back into routine. The childcare worker asked me how she should handle it because, she said, she knew there were special circumstances and she wanted to know the right way to correct Georgia. The other girl was pretty upset--understandably--and lost a few strands of hair.

Eep!

Well, first, of course, I apologized and told her G was a little off her game today. Then I told her that Georgia understands much more than she can express and that she should feel free to handle it as she would with any child, but that time outs and redirection are effective (somewhat) at home. She thanked me and told me not to worry, G is by no means "the worst kid in the room," which...I am just going to take as compliment.

But. The truth is. I don't REALLY always feel like I know how to handle situations like that. At home, with her brother, is one thing, but with OTHER kids?

What do you do?

Do I really have to live outside my bubble?

3 Rainer-isms and a Georgy-ism

1. The other day Rainer was feeling...sensitive. In order to alleviate some of his sadness he repeatedly asked Alex to "Hug and cry?" which meant Alex would stand up while holding Rainer in his arms, the two of them hugging it out while Rainer wailed in Alex's ear. (He is at the stage where he can turn it on and off like a switch.)

2. This morning playing in Georgia's room Rainer spotted a bird on the neighbor's roof. When the bird flew away he said, "Where'd the bird go?" Alex said, "I don't know, where did he go?" Rainer said, "He had to go to a meeting!" (Note: the past couple weeks I have had to go out almost every night before the kids go to sleep, when I leave I say my good nights with hugs and kisses and "I love yous" and tell the kids I have to go to a 'meeting'.)

3. Every morning Rainer askes for "Fifa, Pop Tart on a Plate and La Vin." This stands for: Kefir, a Trader Joe's Pop Tart (on a plate), and a vitamin. Breakfast of champions.

::

Yesterday evening, the we were playing with the kids out in the yard and it was deceptively chilly because of a strong breeze. Rainer kept asking to go to the playground down the street, but we kept making excuses because, frankly, it was late, we were tired, and we didn't feel like spending the time to bundle the kids up in the clothes they would need. (I know, I know, shoot us. Normally we just go.)

But then, I admit it--I know we shouldn't do this kind of thing--Georgia used all her might--which sometimes the English language demand--and sputter-shouted out the word "Playground!"

And guess what we did?

Progress Report

G's quarterly progress report came home in her backpack today. It's good! She has achieved many of her goals and is "making sufficient progress" on the rest. From second marking period (Jan/Feb) to third (now) she has made GREAT strides in her speech and OT skills--especially speech! For instance, last marking period G was labeling action words, but there were so few of the words the SLP listed them out. I think there were 6 or so. This marking period it says, "Georgia is able to spontaneously label numerous nouns, action, descriptive and location words ('in/on/under')."

This is remarkable! (pun intended) And though it seems like we still have a long way to go before labels become phrases (easily and regularly), she is making some progress there, as well. The teacher just sent home a huge assortment of laminated PECS for us to use in sentence strips, so that is helpful.

By far though, my favorite part of this progress report is this little blurb:

"Very nice job imitating peers this quarter. She has shown particular interest in a few of the boys in the classroom and is initiating greetings. She is laughing when they do silly things and imitating the silly things they are doing. On the playground she saw these boys holding hands and spinning around and went over to join them."

A few things about this:

1. Oh dear, what does our future look like? She likes the boys and imitating them when they are being silly?? Oh, dear...oh, dear, dear, dear. Look out fifth grade!

2. But really, it makes me so happy that she is being social and initiating greetings and joining in. This is no small feat for our generally shy and aloof gal.

3. I have a feeling she is used to the boys because of her brother. Although I also happen to know the boys in her class are little less mature scoially than the girls, so this could be why G feels good joining in with them.

4. Plus. Hello? Cute boys?

Alex was ribbing her when I read this out loud to him. There are a few boys names that we often hear at home. Alex said, "Is that Eric?" and I just WISH I could show you the little sly smile Georgia gave him when he said it! So funny. And oh lawsy are we in for it in a few years!

Rainy Day

Picture Pages

I have the stomach flu. Iiiiit's...not fun. I am going to take this moment of relative intestinal calm to catch up on some pictures I have been meaning to post. These are generally from the past week.

Sunny and warm means sidewalk chalk!

Bosom buds.

The kids have been muy into sweeping and mopping lately.

At the state park.

We had the place virtually to ourselves. Very cool recycled tire playground, too (of which I have no pictures).

Who is that big girl with Alex??

Bound and determined!

Made it to the top!  Cool dude.

Cool dudette.

Little squidge.

Big sis.  Georgia took this picture! (You can see she is looking at the button on the camera.)

Mama's gal.

Crouching flower.

When I told Rainer this gate was locked he told me, "Get a key!"

Auto photo on a hillside.

Rainer tries out his new balance bike. (It is going to take some practice, but we expected that.)

First time on the bike!

Mmmmm.....

Mango pops!

Silly girl.

Raspberry pop!

Popsy twins!

Sunday Listing

• We are keeping life very full. Seems spring and fall are this way for us here. The summer to hot and humid, the winter, too cold and dreary. But ahhhh, spring! Ahhhh, fall! I do love those seasons in Maryland. (I am trying to keep a running tally in my head of all the things I love about our life here.)
• Some of those things include: our DS family, our church community, The Y, my poetry group, various and sundry bookstores, various restaurants and cafes (which though we don't get to go often, after three years we are slowly getting the chance to try), the outlying areas with their farms and parks and paths (which we discover more of all the time), other people we have met...and...
• We had a busy weekend. Last weekend Rainer suggested out of the blue that we go to the zoo--so we did. Today, he suggested the farm--so we found one. I have pictures I will post when I am near my other computer. It is SO nice to walk around in areas that are not populated by cars. G is getting SO much better at walking with us, more adventurous and more sure. She reaches up to grab my hand and walk with me now--seems like a small thing, but I assure you, it is huge. So huge, in fact, that walking through the park this afternoon, Alex and Rainer on up ahead, nothing but a periwinkle butterfly and some tulips in the breeze below the trees, I teared up when she grabbed my hand--her own hand so very delicate--and walked with me.
• We went for a hike.
• I have been pain-free, thanks to some help from a new doctor, for the first time in two years and it feels so unbelievably good!
• The fitness challenge is going well. Took a step class for the first time in 20 years this morning!
• 20 years. How is that even possible? The lady next to me refused to believe it is true. But it is.
• I have about a bazillion things I want to do/HAVE to do, but I keep finding time instead for the kids. Our house is a disgrace, but the kids are active.
• Yesterday we went out to a state park and the kids had a blast on a recycled tire park and walking along the water.
• Rainer has taken to saying "Good job, Georgia! You said 'swinging'," (and various takes on this phrase). It's funny, and endearing, and it also kind of eats me up a little.
• Georgia though, has turned some sort of MAJOR corner. Something has just CLICKED. She is talking up a storm! It is absolutely wild and wonderful. Little phrases and funny things that show me just how much she understands. She likes to tell me what she is doing (i.e. "I jumping!")
• OKAy. Off to do some stuff on my should-oughta' list. We have guests coming next weekend and I am not even CLOSE to touching the house list yet. Eep! And I just realized I have meetings every night this week. Holy moly, but we are a busy bunch!

There's a Little Boy

His name is Kirill and he lives in an orphanage in Russia.

Grab This Button

He lives in an orphanage in Russia though he has two loving parents who desperately want to take him home.

The judge in Russia, however, has denied his adoption into his Mommy and Daddy's family because Kirill has Down syndrome. The judge said that though this family is a great and qualified family, they may not bring Kirill home. Why?

Because he has Down syndrome and he is "better off" in an institution.

You can read the whole story here. Once you pick your chin up off the floor and wipe the tears out of your eyes. Let me say, I cannot tell you how much this bothers me. There are really no words.

Kirill's parents are appealing. However, it takes a LOT of money to even start the process, let alone carry it all the way through. There are a lot of us in the DS community who want to make sure Kirill gets home to his family. Institutional life is no place for ANYONE. EVER. And it boggles my mind that there is a loving home for Kirill and he is being denied for such a reason!

In order to help Kirill's family appeal this grossly misaligned judgement, please consider donating to this fund set up by several bloggers who adopted some of their children who have Down syndrome from other countries. For every $10 you donate you will be entered in a drawing to win some INCREDIBLE prizes.

Though no prize is as incredible as bringing Kirill home. Of keeping him out of an institution.  Please, please, donate!

Doing Time

Certainly I had at least considered that having kids would...alter my schedule.

I am definitely the sort who will gladly give up a lot of my own things for the sake of the kids. I have, and will continue to. I also recognize that I need to strike a balance so that I maintain a sense of self, in the interest of not harboring some sense of resentment.

Sometimes I feel a little guilty, like I do TOO much for myself. I usually feel this way when I talk to other moms who tell me they only "get" to go out one night a week, or month. I go out often several nights a week. Now, I am not talking "go out" in the same sense that meant pre-kids--not by a LONG shot. But I go to different meetings and groups that are either JUST for me, or serve me in some capacity.

I am on the board of our local DS group which serves more than just me, but also feeds my sense of responsibility and action and, let's face it, is one of the only things new I could write on a resume in the past four years; I am also involved with the inclusion action group. Besides those things I go every other week to a small group ministry at church, I go to a monthly mom's night out, I just joined a fitness challenge which will meet weekly at the gym, finished a weekly class at church, and started meeting weekly with a poetry group. I do these things because they feed my soul. After a long day of dishes and butts and rejected meals, I need something that is my own. I am lucky that I have a husband who doesn't really like to go out at night and goes to bed early. Yes, some weeks it feels like we only see each other briefly, but he gets home from work early and we eat dinner together almost every night (except this week b/c of some poorly timed doctor appointments).

However, I have been thinking lately how this is not likely going to stay the same. As the kids grow up and get more involved in evening activites, something is going to have to slide.

I went to a conference this weekend where Brad Hennefer and his mom were two of the presenters. His mom said that Brad, who has DS, was able to take part in four years of varsity golf in high school, and play on the basketball team because their family "never missed a single practice or game in four years of high school."

Wow.

I played sports in high school. The first two years I played all three seasons--swimming, basketball, and softball. I relied on my parents occasionally for rides to and from practice, and my dad came to a couple of my games, but I don't think my mom ever did and they certainly didn't stick around for our practices which were sometimes upwards of three hours long!

I know it's a different scenario. And Brad's mom, as well as I, attribute that commitment to Brad's success in part, in the school's willingness to keep him actively involved. They knew his parents were right there to support him and the team and coaches.

I know other parents who talk about how much homework time they put in with their kids in the evenings. And really, as a parent, I expected that. I get the sense though--I KNOW--that parents with kids who have DS are putting in a much bigger effort with their kids. Time, energy, know-how, etc.

I have a feeling all this me-time is fleeting. It seems incongruous that I would have me-time NOW while the kids are 2 and 4. And it does come at a price, I won't lie. I am tired, our house could certainly be cleaner and I don't know how compelled I would be to get SO involved with these things if I were in a place where I felt more at home--where things were more natural and I was less join-y. (i.e. If I had family and friends to spend my time with--although I now count a lot of the people I have met through various groups as friends.)

Anyhow. Just a thought. Not sure where it will all lead. I want the best for my kids, I know that. And I am willing to put in the time. But I really can't imagine what our life is going to look like when both the kids are in elementary school. It will be wild just having them both in school part time next year! We'll see, I guess. As with everything.