Unringing the Bell

Three's a Charm

This article. Is freaking my freak. I can't coherently respond yet. Still digesting, but thought some of you would be interested.

Two in One Day? More Than You Bargained For.

Look at me blogging twice in one day. That hasn't happened in awhile.

Sooooo.......

I just got back from Georgia's last day of camp party with the kids a little while ago.

Here's what keeps swirling in my mind. Georgia was unable to sit at the table to do the craft with the rest of the kids. I say unable, but I mean...well. Unable. She was afraid(??) of all the new faces/parents and chose to sit off to the side with me and Rainer and a coulple other siblings. We brought her a little table so she could still work on the craft, but at a "safe" distance.

Georgia doesn't have many self-help skills. Dressing, toileting, etc...she just shows very little interest in any of these tasks. She feeds herself pretty well these days. That took a long time, but it came. I am hoping to one day say the same about the other things. She is only just starting to even think of brushing her hair out of her face, and she WILL brush her teeth (but we have to follow after her...which...seems good to me).

She's fidgety. Sensory. Anxious. She flits around almost unable (if she is not interested in something) in sitting still. However, if she likes something she can get a little obsessive about whatever it is.

She is a "flight risk" in the situations she doesn't like, or...if she sees a shiny penny. (Hee hee. In other words, if something cool is happening in the hall, she's gonna' go check it out.)

She's not the best listener. She has a hard time following directions...one step OR more.

Her speech is difficult to understand and according to all the paperwork SEVERELY DELAYED.

There's all. this. stuff. That if I let it (and sometimes I am powerless to this), can really put a damper on my day. I could just look at her like this. This list of things that are hard for her. That make her "look weird" or make her "difficult to work with."

And yet? Everytime I have meetings with the adults in her life? They tell me how smart she is. And the thing is. I know this to be true. I believe it. And I trust it. I know my daughter is smart.

And I truly don't think they are pulling my leg either when they say it. I don't think they are trying to...pad something for me. I mean, if anything? They sometimes say it in a way, like "Honestly we really didn't know what to expect, but...the gal's pretty smart!"

They rave about her "reading skills" and are impressed that she can name all the musical instruments (something she learned all on her own and simply because she LOVES music), and that she reads all the months of the year and days of the week in circle time, that she reads the words for the weather, and in books, that she names all the people in her class, including all the teachers (and there were about 8 this summer). They talk about how funny she is and her sense of humor.

And the thing is? Despite that long and frustrating list I typed out? And although it can really get my britches in a bundle?

I know this gal is smart. Is witty. Is wise.

She doesn't "look" like or act like most other kids I know. WITH Down syndrome OR without. It can be really puzzling. She's uniquely her own kid. That's for sure.

As Rainer is uniquely his own kid.

As I am. As her father is.

I don't know what I am getting at except to say...we work on a shit ton of stuff. Day to day life takes a lot more patience than I sometimes I have. I don't want to lie about that. Some days, are really flippin' hard.

But the payoffs are good. And I really like this little girl. When she'll let me.

I have faith in her, I fear the future, but I have faith in her.

Ramblin' Rosie.

A Lil' Bit of the Ol' This & That

1. Rainer has a new thing where, if he is talking to one of us and another person answers or responds he will say, for instance, "I am talking to Daddy, Mommy." It's polite, but boy does it put you in your place!

2. Yesterday I was feeling kind of down. No huge thing, just frustrated because G's issue with sensory processing has a way of rearing its head when you least expect it and it can be limiting for all of us. Yesterday, I was shocked when she had an issue with a music class we were going to check out. Lots of other little kids and music. Her faves! But the room was really echo-y. We couldn't even get her in the room for a minute. I could handle not going to a music class (although I like having things to do outside of the house and INSIDE the a/c during the summer), but Rainer was really bummed. And that made ME bummed. Too bummed, probably. After all, he ended up comforting ME later in the day when he could tell I was still feeling kind of sad. (Funnily, I was still feeling sad because he kept bringing up how we couldn't go to music class because G doesn't like the loud noise and how he wanted to go. It was really bothering me how much he was really comprehending how he was limited because of his sister's issue.) ANYWAY. He ended up trying to comfort ME. He brought me Big Guy (his teddy bear) and said, "Want it? It makes you happy," and kissed my hand. I order some child-size noise-cancelling headphones last night, but I don't have great hope that she will keep them on.

3. Today is Georgia's last day of camp. We are ALL bummed! She has really come so far in the past 6 weeks! Plus, she plain old LOVES it. She yells "Camp!" and "Camp is awesome!" on camp mornings and is always bringing up her aide's name and the other kids' names. Thankfully she'll get to see some of them (because I am friends with their moms) again, and she was also invited to one other boy's birthday party next week, so she'll see at least some of them there, but I wish she could do the whole thing for the rest of the summer and through the school year! There is an opportunity for her to continue on some level with the program through the school year, but it's $$$ and they don't take insurance (because it's a university and students and not a medical establishment). Not sure we can swing it, unfortunately. I am just happy she had this opportunity and I am hoping she can do it again next year. It goes up thru age 7. So she could potentially go three more years! They have a year-round preschool two days a week as well. But she will be in her public school five mornings a week and it doesn't work out.

4. One affect of G's speech is that she often only says the last parts of words if she is not REALLY thinking about it. (e.g. -za instead of Pizza). If you don't know her, and often if you are not in context it can be REALLY hard to figure out what she is saying. EVERYONE gets frustrated, but no one more than she. She also tends to string words together, speaks quietly at times and QUICKLY. She often asks for the DVD "Princess Potty Power." It sounds like "cesspower, cesspower!" Now, I mean, WHO WOULD KNOW WHAT SHE IS TALKING ABOUT BESIDES US????? It scares me for her future with communication. We really need to work on these things. Language seems to be coming along, she is stringing along more phrases, (one new one I love currently is after she asks me to do something such as "Play bedroom?" and I say, "Sure!" she says, "Let's do it!"), but it all goes hand in hand, doesn't it? The WAY she says it and how it sounds are just as important as THAT she says it and that she understands things. It's incredibly interesting to me, this speech and language acquisition. I just wish it weren't my own daughter who needs such help.

5. G still sings a lot though. I think songs are where she is most comprehensible, actually.

6. Both the kids have a case of the sniffles. Rainer fell asleep for the first time that I can recall not in his bed or the car yesterday. In the midde of a puzzle, bum in the air, on the living room floor.

Hot Enough for Ya'?

Duh. I bet that is at least five other blogger's title today, huh? If you are on the east coast anyway.

I feel, for the first time since having two kids, that I am "doing" summer, semi-okay. We have made it a point to get up and out of the house every morning M-F and that helps tremendously. The kids are both at ages where they can do things and are behaving better in public places and it's really been a good summer so far. Overall.

Camp ends after next week though. And the week after is the end of summer therapies for G. So that will certainly make it harder to get up and out every day because won't HAVE to be anywhere. But I am going to work on it. Work on making sure we have something. We'll be traveling for part of that time, so that helps. But I won't lie, I am a little nervous for the no camp/no therapies part of summer.

But for the next week (and tomorrow) I am going to embrace it.

Funny Smoosh

When Rainer wants his chair to be pushed in he says, "Need to smoosh Rainer in!"

He also likes to open and close his legs when I am changing his diaper and say "Open the knees. And smoosh the penis." (hahahahaha I can't believe I am writing this on the WWW.)

Silent Spiders

I won't go boring you with all the reasons I've been everywhere but here, lately, but suffice it to say, I've missed you! Thankfully, I have had a moment or two most weeks to jot down in the journals I keep for the kids some of the funnier (and on occasion, odder) things they've been up to or done. Those books are rife with future blackmail material!

I've been photographing some and we got a new digital recorder which I am just testing out. It is going to be immensely useful and handy and fun (as soon as I free up some room on my computer to store the digital files). Have I mentioned how digital storage of images, video, music, etc, gives me angina?

Here was one of the first videos I shot. Georgia was "noping" me to death because in reality we had already done the bedtime routine and she just wanted to go to sleep. (Normally, she readily and happily REQUESTS these songs (and at least several more), but by this point she was zonked because we'd already read our book (I am reading her "Charlotte's Web"), and sung an arm's length of songs.) It's still kind of cute, though (if you ignore my big mouth.))

Besides that, let's see. I have a lot of Rainer observations and a bunch of Georgia pictures (most of them are ones of her with her MP3 player, it's sort of a montage of images to show just how much she la-la-loves that thing!), so maybe I will just intersperse the two. Sounds fair, right? (Parents of more than one, do you find yourself doing that? Trying to equal out the attention paid to one kid or the other? I do. Rainer takes a lot of my attention, while Georgia is willing to hang on her own a lot. I have to make a concerted efforted to peel Rainer off me and seek Georgia out.) But I digress.

Let's do one of my famous lists. (Famous to whom? You ask? Why...the crickets!)

1. Rainer is noticing (and commenting on) everything these days. And he has a good memory. Which is flabbergasting. And a little scary. I went on a yellow light a week or so ago and he told me, "No go, Mommy! Yellow means be careful, not GO!" I tried to explain to him that I was indeed continuing with caution, but he wasn't having it. Also, since we explained the Don't Walk and Walk lights to the kids at a parade recently, we can't walk or drive anywhere without one or both of the children pointing them out. Georgia says it like one word, "dontwak" and because Rainer is a monkey and likes to copy everything, so does he. "That means dontwak, Mommy."

2. Lately, Rainer gets offended if Georgia doesn't answer him or acknowledge that he is talking. I, of course, think this is WONDERFUL! Built in inititve! Most people don't wait Georgia out. They just assume she can't understand or respond or whatever and they let her slide. I think she is used to being let off the hook. Not by Alex and I, and not by her therapists, but other kids, other parents. But now, not Rainer, either. He is very excited to tell Georgia about his time away from her when we pick G up from camp, for instance, and he wants her to acknowledge him and his adventures and treasures. "Mommy, Georgia not say hi to me!" "Mommy, Georgia doesn't want to see my new ball?" "Mommy, Georgia won't give me hi-five!"

When I walk him through how to get her attention, how to engage her, his is THRILLED when she responds to him. So am I!

(Surely going to be her album cover. Rolling Stones shirt, trashed room, a ukulele, a rainbow tutu, and a potty.)

And some more MP3 player love (nee, obsession).

 

 

 

3. A few months back, before Rainer was able to articulate with quite as much aplumb what he was thinking about, what irked him, what furrowed his brow, prior to his apparent new night-time waking stage (similar to the one G went through at this age, though not nearly as terrifying--nightmares??--whatever it is, it kind of sucks), we used to occasionally put on this one episode of Sesame Street and he would LOSE. HIS. EXCREMENT! Like, in the first scene. As soon as he realized it was that episode. All other episodes, he was fine. But this one? NO CAN DO!

It took us a little while, but one day I put it together that he was scared--I mean PETRIFIED--of this one skit of the itsy bitsy spider. Admittedly, it's terrifying. A quick google search garnered no video online, but let me tell you, it's a grown woman, dressed in a spider costume, a HAIRY spider costume, acting out The Itsy Bitsy Spider.

Rainer HATES it.

Today. Months later. I happened to pop on a Sesame Street. Both the kids are sort of "off" tv at the moment, preferring to do stuff (thankfully), but since it's been so dreadfully hot I thought we'd take advantage of a little SS. Well, Rainer wasn't having it. It was mid-episode, and I certainly didn't recognize it, but he did. He started freaking out. Telling me to turn it off. I asked him "What's wrong, bud? You don't want to watch it?"

Through his tears, his body shaking, he told me, "Rainer no like the spider!!!!! No like the spider. I want to turn it OFF, Mommy!"

Well. There you go. It WAS the spider.

I find this interesting in so many ways. First, holy good memory, batman! Second, where does a two-year-old learn about fear, and how? Three, good verbalization. And four, huh. Wow, even. Man. Shit. Dang. I feel bad. Think of ALLLLLLLLLLLLLLLLLLLLLLLLLLLLLL the times Georgia has had a meltdown or freaked out or cried or moaned or kicked or screamed or whatever other behavior. And I didn't know why. And I thought, "Maybe this is indicitive of something more." Because you freak out a little as a parent. You know>

But maybe it was just a hairy spider. Whatever that hairy spider was. 
 
  (Georgia is sitting in her chair with the tray on because I was THIS close to giving her a haircut. And then I decided I wasn't ready.)

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Fireworks Fail

I cant say I am surprised. And I suppose...I had it coming because I am pretty sure I ruined every 4th of July fireworks display for my parents at LEAST until my twelfth year (ok, maybe my sixteenth!), but even though we practiced...

...and even used earplugs, the fireworks were not well-received.

At first actually, Rainer was saying "Yes!" and "More!" But it QUICKLY devolved into "I want out of here!" and "No like fireworks!" and "Let's go THAT way!" G was pretty much NOT INTO IT from the first bang. She liked the sparklers beforehand though, and Rainer was quite please with his glowsticks (which are currently illuminating his trip to la-la-land).

I feel bad for Alex b/c I am pretty sure he wanted to see the show, but I don't feel TOO bad because the biggest fireworks display around (without going down to the harbor) is right up the street at the middle school. Our village funds them! So, it was a 10 minute walk and we ran into our neighbors while we were there and we can see most of it on our walk home and from our back yard.

We knew we'd be up late and thankfully the kids took long naps after we went to the parade this morning. Georgia has a love/hate relationship with the parade. She LOVES the marching bands, except they are just too loud. She went from cheering to crying to cheering to woo-hooing to moaning to bopping around to the beat. Poor kid. THAT'S probably where she could have used the earplugs. Next time.

I got some video, but no pics. Will see if there's anything worth watching later.

Here are some pics before the parade. Of course there are never any of the four of us together and no one can ever look at the camera at the same time, but that's life, right?

Red, White & Kinda' Blue (But there's flowers in it.)

Truth is, I am feeling kind of down this holiday weekend. I don't know if it's a coincidental cyclical thing (if you catch my drift) or if it's that same darned holiday in the mid-Atlantic blues I tend to feel (because we're not near friends and fam), but it is what it is.

It doesnt't help that Rainer is messing with our sleep schedule. He's 32-ish months old and suddenly he is having a hard time sleeping through the night agan. It probably correlates some with the new bed v. crib situation we put him in a couple weeks ago, but it's exhausting and he tries every trick in the book! "Come in Mommy and Daddy's room?" "Have a teeny tiny drink of water?" "Need a light on?" "Need a light off!" "Books? Music? Brush teeth again? Sing more songs??????????"

And on and on and on.

I am not really WORRIED, per se. After all, Georgia was having night terrors at this age which were incredibly difficult to deal with in a different kind of way, and I am pretty sure it's all just one of those developmental stages, but whew! It's wiping us out!

Not only has the sleep gone bonkers, he is as willful as the day is long, and smart to boot! A dasterdly combination!

Last night, to be fair, he was actually doing well, when an incredibly loud (even I was a little nervous) thunderstorm sent him staggering out of bed in a panic at 3:40am. When I got him settled in our room (there was no way I could coax him back to bed during the storm), he said, "I love thunder. That lightening is so silly." He says these sorts of things to try and empower himself and cope.

He continues to surprise and delight us with his observations with and about the world. I really don't know where he comes up with a lot of it.

A new funny from this morning was when he spotted me getting out of the shower. He said, "Mommy's belly is silly!" I was feeling a bit self-conscious thinking perhaps he was pointing out my little paunch, when I realized he was looking at my chest. He went on to say, "Mommy's belly is silly. They just *POPPED* right up!"

Ay yi yi, this kid!

Anyway, as I was saying above, I have been a little down this weekend and this evening Rainer and Daddy went on "a mission" as the boys call errands.

When they got back Rainer ran in and said he got me and Georgia "surprises!" They got us not one, but THREE bouquets of flowers because they couldn't decide which one to get! We are so spoiled!

And now. Here are some recent pictures.

Our boys.

Note: This rainbow shirt is actually one I got for Georgia at the farmer's market in the city today. I got Rainer a really cool tie-dye with dinosaurs on it. Turns out G preferred the dino one (a tomboy like her mom) and Rainer had no qualms about wearing G's shirt.

The accosting hug.

These smell really awesome because they put a bough of pine in the bouquet.

No one has ever gotten me sunflowers before, but I have always wanted some!

Does his face just scream TROUBLE or what? He has been asking me to put these "bows" in his hair the last couple days. Then he says "I'm a princess! Nooooo....I'm a prince!"

In potty-training news (did you know there was such a thing?), we're back at it a little more seriously. Not TOO seriously, but I admit we slacked off a bit. Georgia earned her fifth start today on the chart which means she got to pick something from the prize bag (a bag of crap, basically, that I got at the dollar store). She chose the bead necklace (as I KNEW she would), and as a result Rainer went into such fits of envy he sat on the potty trying to go for a good 20 minutes to no avail. (He was really going to be ticked when he found out he had to do that four more times to get his own beads or other prize!) (Note: The chocolate bunny success of a couple weeks ago, nor anything else, has not worked again and we have backed off PTing the boy-child unless he requests using the potty...which until today has decidedly NOT happened.)

Tomorrow we're going to stay up late and walk down the street to the middle school to try fireworks for the first time. We're bringing earplugs. And honestly, either one of them may love and/or hate them I really don't know. Tomorrow morning we'll go to the parade.

But I will say, Georgia walked in the middle of a BIG crowd at the farmer's market this morning all on her own and that, my friends, is a first. So who knows? Certainly not me.

 

Various and Sundry

Lists seem to be the order of the day lately. It's how my brain works. To do lists, to get lists, bits and pieces of memories in list form. So that is how we'll work on the blog a lot this summer.

1. Georgia continues to love camp. On camp days she tells me the names of her two favorite pals and the name of her aide and is generally happy and excited. I continue to be impressed with the program and Alex and I are already talking about saving our nickles so she can go back again next year. I am not sure of the age limit, but I know she can go at least until she is 7 (because that was the age of the little girl we met the first day) and at this rate we'll want to send her every year!! On Friday they brought in a petting zoo to school and according to G's aide, Georgia was smitten with the rabbits. Other than the rabbits, there was a goat, a chicken, a duck, and...I think something else, but I can't recall at the moment.

2. A few friends and I have started a weekly playdate for the days when we don't have camp and last week was the first one. I really feel like this is a whole new summer of opportunities for us this year. Because we know so many more people, for one, but also because it is MUCH MUCH easier to go places with both the kids. They will both walk places holding my hands, or staying relatively close by, and it's SUCH a relief I can't even describe. Thursday before our playdate we went over to our town's farmer's market to walk around and people watch. It was hot, but the kids enjoyed it. I think we'll make a habit of it on Thursdays.

3. Friday Rainer and I discovered Tiny Town (FINALLY) at the local mall when we were there for their weekly family fun day while G was at camp. He was sweating up a storm after running all around and climbing all the structures and when we got back to the van (after a wee meltdown over leaving--I swear, this kid is TOTALLY testing his/my boudaries lately Willful Willy!) he kept asking "What happened to my head?! What happened to my head?! I put it in the pool?" He was basically asking me why it was so wet. I said, "No, you didn't put it in the pool, it's wet because you are sweaty." He then told me about three times, "I need a new head!" followed by "I can't take it!!!"

4. Some new phrases G is using regularly now, "Help me, please, mom." (Usually inreference to her MP3 player) "Up high!" (referring to things kept out of reach on the bookshelves in the living room), "Rainer, come on!" She has also been saying something that sounds just like "Gadzooks!" for the last couple days, but we don't REALLY think that's what she's saying. We're hoping to have an a-ha moment on that one real soon!

5. G's new MP3 player came loaded with a lot of music including a lot of They Might Be Giants. It is SO funny to hear her sing, "Minimum waaaaaage, Hi-yah!" :)

6. Randomly, while driving in the car the other day, Rainer said to me, "Mommy, you can't eat poop." He had been completely quiet before that. I said, "No. Eating poop would be yucky. One, it would taste gross, and two, it might make you sick." Then I started to wonder how he knew that, "Rainer, YOU didn't eat poop, did you?" Thankfully he answered, "Nooooo, Mommy. You can't eat poop. Just food."

7. I think I am in for all sorts of surprises with this kid. He also likes to talk often about his boy parts and ask me if I have a penis. Then, because he already knows the answer to that question he said, "Just Daddy and Rainer have a penis, not Mommy and Georgia."

8. Ay yi yi!

9. My shrink was asking about G the other day and I got to talking about her speech, and previously her signing. He was very interested in all that stuff and so I told him all about it. "Wow," he said referencing the fact that we learned sign language alongside Georgia, "so it seems you have had to learn a lot since your daughter was born." I didn't say as much, but later in the car I was thinking about it and it's true. I guess you could say I have my B.A. in DS. And since she is in her fifth year, I am working on my Masters! :)

10. The "teacher" in Georgia's camp group came out to chat with me in the carpool line on Friday and told me Georgia is doing very well and they are working to get her to participate more with the group. I know this is an area where G needs some assistance, it's and IEP goal that she participate more with group activities and with peer to peer type stuff. She's a loner, Dotty, a rebel... 

Thing is, I started to stress about the fact that she came out and said they were working on it. Working on it means it isn't just...happening. You know? I mentioned it to one of the other moms at our playdate (her son is in G's group at camp). She made me realize, that a.) it's not the end of the world, but 2.) durfy doo.....if it IS an issue (and obvs it's somewhat of one), what better place to have her than a camp where they WORK on these issues??? I am DOING what I should be doing! Playdates, camps, pool side fun with other kids?

Guilt be danged!

And 3.) I see nothing wrong with an introspective kid, really. I just worry. Maybe you know how it is.