I feel like we just took the next step to becoming true Baltimoreans--or, as the natives say, Bawlmers. We took the kids to their first Major League Baseball game at Camden Yards to see the Orioles play Tampa Bay. We didn't get to stay for the whole game--the kids just weren't up for that--but I just checked the score and the Os won!I kind of feel like WE won, too.
We got there a little early so we'd be sure to find ample parking. (Alex scoped out the best spots beforehand.) We also knew to grab the kids their hot dogs right outside the park for $2.75 cheaper per dog. And our tickets, thanks to Georgia's baseball league, were comps! What a great way to test the waters--for free (ish)!
We weren't sure how it would go--a night game with two kids who are noise sensitive and all. But we did it and I am so glad we did. It wasn't without a couple minor glitches, but it was mostly a wonderful way to spend the night before Mother's Day. I had a blast. I would love to go again! It feels like progress, like we're getting somewhere with these kiddos.
The kids both fell asleep in the van on the way home and when I carried Rainer inside he mumbled, "I just need to rest on the couch." After getting him into his PJs (he insisted on wearing the shirt he got at the game) I brought him upstairs to bed and he told me, "I just need to close my eyes."
We done tuckered them out!
I feel good. With a child who used to (and sometimes still does) have a hard time just going to the grocery store, I think we got to a point where we stopped doing a lot of extra things because the risks seemed too high (costly, frustrating, high anxiety....) if it didn't work out. I know it sounds like a small thing, so many people take going to a baseball game with a 5 1/2 year old and a 3 1/2 year old for granted. But for us, it's no small potatoes.
Go us.
And go Os!
First MLB game!
These pictures were taken before they donned their Orioles tees and foam fingers (given to us by G's baseball team).
Earlier this week, after helping my daughter climb out of her car seat and out of the back of the van, I tucked her arms one at a time into the straps of her little black L.L. Bean backpack with her name embroidered across the back of it. The backpack is black, because if you ask her, it's her favorite color, and despite my asking at least fifteen times she always requested that color over the lime green, turquoise or pink I had my eye on.
After she and her brother exchanged their good-byes and their "see ya' later!"s and I pressed the button on the keyfob for the door to slide shut, she and I walked across the street, and joined up with the other students lining up for their morning at school. At school we are greeted by "Hi, Georgia!"s and "Hi, Georgia's Mommy!"s and when Georgia recognizes her friends--IF she does while she is in her own eager little hop-skip world down the path to the school building--she waves exaggeratedly at them and says their names. She knows all of their names, and has since the early weeks of school.
This week, even the sight of the huge dead crow that had met it's demise with no doubt a large thud when it flew into one of the classroom windows high above the entryway where Georgia and I meet her aide every morning, couldn't suffocate the disarming sense of pride and accomplishment I felt for my daughter on the warmer than average December morning.
She was going to school. She had a pep in her step. She was wearing her backpack on her back like the other kids! (One of those little victories felt by the parents of sensorily-quirky kids like mine.) And when I let go of her hand, and she walked up to Ms. W turned around and smiled, waving, and said "Bye-bye, Mommy" before walking into the school building to start her day, I knew I wanted to keep blogging.
There are so many little things I want to record.
I'll surely be a little more cautious about what I have to share, but I don't want to stop. Out of the over 10,500 comments I've ever received on this blog, less than a handful of them have ever caused me any negative concern. And I don't want them to define this experience for me.
This evening, peeling back the foil wrappers from the Hershey's Kisses we were unwrapping for the Peanut Butter Blossom cookies Rainer and I were making, he looked up at me and said, "I like doing teamwork with you, Mommy, because."
Lately, he ends a lot of sentences that way. "Because." There needn't ought to be much of any further explanation anyway.
At night--and other times, actually--he tells me "I love you and I like you because." It's become our little thing.
There is no reason. Just because. Not only do we love each other. We like each other, too. That feels remarkable. I hope it will last.
Some things you want to do just because.
Because your son likes "doing teamwork" with you, and because your daughter carries her own backpack and says "Bye-bye, Mommy" before starting her school day.
Why wouldn't I want to write about those things?
Why wouldn't I want a record?
Why wouldn't I want to share them with the world?
We've been working on teaching the kids mine and Alex's names, our last name, and my cell phone number, in the event that they should ever become separated from us and should they need to know the answers to those questions. It's going a little more slowly for Georgia--as we expected it would--but I often catch Rainer singing the little tune we taught him with my phone number as he goes about his daily activities. Even though it's going a little more slowly, though, Georgia is getting it.
Both kids when they are addressing us, will sometimes get our names confused. I can't tell you how often one or the other of the kids will say "Da-Mommy," to me, or "Ma-Daddy" to Alex.
I really had a good chuckle yesterday though when Georgia attempted to say hi to me. She ran up to me excitedly and said, "Hi Dad-Hi Ma-Hi-Trish-Hi MOMmy!"
So yeah, it's sinking in.
Our newest bit of news is that Georgia is getting glasses. We went to the eye doctor yesterday and over the last two years Georgia went from "She'll probably need glasses one day," to "She's REALLY near-sighted!"
We kind of figured. She's started squinting a lot when looking at things across the room.
A friend helped me wrangle the kids at the optician's office today while we got Georgia fitted for her new glasses. I feel mixed about the whole thing. Mostly, I'm kind of just like "Whatever. She needs glasses. Big whoop! I have them, her dad has them, every one in our families other than Rainer (who, I should mention, feels TOTALLY on the outs and wants a pair of his own in the WORST way) now has them. It'll help her see!" But there's a teeny tiny little part of me that aches over it. The TEEEEEENIEST smidgen. Because we'll be covering up her face, and the bridge of her nose that I kiss regularly.
We ordered her glasses today though, and in ten days or so they'll be in. It ought to be an adventure. Getting her to wear them. But we're up for it, I guess.
And in two days, this little gal, who 1822 days ago cracked my world wide opened only to help me find a tiny little pearl in amongst my own guts, will be five years old. I can hardly believe it!
We've come a long way. I hope we have a long way to go.
Rainer is way into writing and drawing now. Suddenly.
Today, with just a hint for the 'i' he spelled and wrote his name. To her credit, while I was writing hand over hand with Georgia, she spelled G-E-O in her name all on her own. I had NO idea she could recite it out without looking. When I asked her what her name starts with she just said it. (And she got distracted at "o" by something Rainer was doing, so for all I know she knows how to spell her whole name.)
See his extra flag on his 'e'? How cute it that?
I have to admit, I was impressed. And yes, I suppose I am bragging. But mainly because I am sort of like "wha-? Really?"
And honestly, it's all because of The TV Teacher. I saw a presentation on video modeling by the people who run this company at the convention in Texas this summer and I was enthralled. I really think this is going to be the KEY to teaching Georgia a LOT of stuff. Not, by a long shot, "just" writing.
Apparently, Rainer, too. Although we only purchased the shapes video (which teaches how to draw basic shapes), he saw this video on youtube and between that video and the shapes one he taught himself his own way to write. For instance, the letter "r" is written as he says "Circle it around, draw a stick and another stick."
It's definitely coming along. Ever since Georgia went to speech camp over the summer she has been making great strides. I don't fully understand what they did at camp--other than hold her accountable--but over the six weeks she was there she started talking much more.
Her big speech goal on her IEP (in general terms) is to speak more spontaneously. We have all sorts of speech and language goals that are specific, but I would say this is the overarching goal. It has been incredibly interesting, and at times incredibly frustrating, watching how one's language skills develop. I used to think of speech as just...talking. Words. Vocabulary, I guess. But that was back when I wasn't REALLY thinking about all that goes into speech. Language is the big thing in putting all those words together and communicating.
Let me clear. Georgia is a GREAT communicator. She indeed has an incredible voacabulary. She just hasn't been a great communicator using speech.
But she's getting there.
The first step was acquiring the ability to make the sounds (this started way back when she was a wee thing). See this video here or here from around 4 or 5 months old. This was pre-open heart surgery and she was still on a feeding tube and in the hospital because she had RSV and was still on oxygen--oh the joys.
As you can see, she's been vocal since way back then.
Of course things progressed and changed over time, but she's always been a relatively quiet gal in terms of words, however. (Whining, yelling, moaning...a different story.) About....oh, maybe a year or year and a half ago, suddenly she started with the echolalia--repeating everything she heard. At first, this kind of freaked my freak (to put it bluntly). I had always heard of echolalia in relation to autism and I wondered if there was a link. Come to find out, she was practicing.
She still repeats a lot of what she hears. But it turns out, this has been beneficial. She can now repeat almost anything you ask her to. It's not always entirely accurate, but I would say if you give her one word, she's pretty clear. The more syllables, the more difficult for her to repeat clearly, but she's on her way.
Lately, we've been working on stringing it all together. If you think multisyllabic words are hard, try putting a whole BUNCH of words together!
When I heard Libby Kumin talk a year or so ago, she mentioned that this is common in the population of people with DS. It has, in part, to do with memory. It's not the easiest thing to remember the first part of a phrase when the last part of the phrase (or word) is freshest in your mind. As a result we get a lot of ends of words and sentences.
To work with this we started using PECS and sentence strips. Georgia does REALLY well with them. She already has a large list of sight words in her repertoire and using the sentence strips seems to help not only her speech, but her reading as well. PECs and sight words help her organize, slow down, and remember. We started last year with a few common pat phrases and it is growing from there.
Honestly, this went against a lot for me. I was resistant to the supplied phrasing. It felt like...I don't know. Inauthentic or something? Like, yeah, it's nice, but she's not REEEEALLY talking.
Man, I was being such a doof. Now I realize how silly that was. Now, after learning how one uses sentences Georgia knows how to ask for things and use language. Sometimes she will just say the sentence on her own, sometimes we need to coax each word, sometimes we say "use a sentence, please," and sometimes we have to model each word. We don't really use the actual sentence strips and PECs for the phrases she knows well anymore. However, we may start a new string of phrases to help her work on saying new things.
I think just learning the patterns of speech and language through a few sentences has helped her figure out how one might say other things, too. We have picture books with photos of her, and photos of other kids doing things and we ask her to describe them. This helps her say longer phrases. (e.g. "The baby is crying." vs "Baby."" or "Cry.")
I think a lot of it has to do with her budding confidence with speech, too. I am noticing her saying all sorts of phrases that she has heard us, or others say, appropriately. She speaks rather quickly and tends to string words together so you have to really sort of pay attention (although sometimes later in the day I will hear what she said in my mind and realize...OH! She said...whatever it was she said).
She says things like "Bye, Rainer. See ya later." And "Knock know, who's there? Come on in." And "Uh-oh, what happened?" And the other day when I showed her a picture of her hockey coach she said, "Hiya, Coach!"
I can't tell you how awesome it is hearing her say things like this. Alex and I often catch each other's eye when she says things as if to say, "Wow! Did you hear that?" And you could probably cut the pride in the room with a knife!
It's an incredible feeling. And hard earned.
I know there have been many nights (and days) when I have wondered if she will ever talk, and so it makes me so happy to write this post to say she's doing it!! She'll be five (!!!!!) in a couple months and I remember when she was much younger thinking "Maybe five will be the magic number."
I don't really believe in magic in terms of development anymore. It takes a little more blood, sweat, and tears, and a lot less illusion. But for this, gainging on five seems to be a turning point anyway.
She has a long way to go before people who, as Dr. Brian Skotko says, "Don't speak Down syndrome," or know her and spend time with her everyday, can fully understand everything she says, but she's come so far.
I can't tell you how amazing it is to have a conversation with her. Something simple like:
G: Uh oh. What's that. Hear?
Me: What do you hear?
G: (holding her ear) Listen!
Me: What is that?
G: Rainer.
Me: What's he doing?
G: Rainer cry.
Me: Yes. Rainer is crying. What's wrong with Rainer?
G: Rainer sad.
Makes my heart soar. Truly. It soars.
***
And now, for your viewing pleasure, here is a little video I took a few weeks ago. Sometimes the words just come for her, and sometimes, this is what it takes to coax her into talking.
I never thought of myself as the patient sort. And, truly, I am not. But she's helping to teach me.
For ten weeks (this is week three), I am back doing The Y Fitness Challenge. Truth is, I am having a hard time motivating this time. I lost a big chunk of weight fairly quickly (though with hard work) this past spring and I have been maintaining that weight loss, but unfortunately, not continuing to lose. It's been frustrating. And I am pretty sure I know what I am "doing wrong" (though my therapist would frown on such negative self-talk), but I am having a hard time motivating to get over this VERY LONG PLATEAU.
I try to be positive. I am in a better place now than I was this time last year, but I am kind of...tuckered out.
I know in this culture we put a lot of emphasis on body size, and as a product of this culture, of course I am not immune. My main motivators though are feeling better physically (less pain), and being able to keep up with the kids. Those are the top two. It also feels good to--in addition to feeling less pain--feel strong.
Frankly, I also want to live as long as possible with a decent quality of life. (i.e. I don't want to die. But if I am going to stick around, I want to feel good.)
I have to say, having a child with a disability does light this "get fit" fire under my butt. I want to make sure I am around as long as possible for her.
But, you know, saying that, I have to remind myself that I also need to trust that even if I am not around she will be taken care of. She will be okay.
That's how I get through the day. It's my own brand of faith.
I am able to do much more physically/athletically than I have been able to do in a long time. That feels great! I have much less pain. I can run! (This is huge, even in top form in high school I wasn't much of a runner.) I am in a good place and my clothes fit better (or no longer fit, or are fitting again, depending on what size we are talking about).
So there you have it.
It's one of my biggest struggles. It truly is. And sometimes it has me feeling weaker than anything. Sometimes it makes me feel...stupid, honestly. I don't like admitting that, but it's true.
What a day we've had--an awesome way to start the month! Look at it, it's 10:30pm and I am only just now getting around to my first post for the challenge! Let that be only evidence of the full life we lead and not a suggestion that I am not into the blogging. I am committed! And I am so excited by the number of you folks who seem to be as well.
Our day started EARLY this morning with the advent of...wait for it...HOCKEY SEASON!
And guess who is the one in our family who will be playing this year?
Our 4-year-old little missus!
(Coach Jimmy helps Georgia test out the ice for the first time. Luckily mom has cell phone with her to take crappy picture!)
That's right, Georgia is going to play hockey this year with The Baltimore Saints, an adaptive hockey team. She is going to suit up in all the gear with skates and pads and a helmet and a jersey that even has her name on it and her very own Baltimore Saints jacket!
I can't wait to tell you all about it. And I will. I can't promise that hockey won't come with some struggles (um...hello...this is for the next six months of our lives and includes being at the rink by 7:15am every Saturday(!!) to say nothing of the fact that Georgia doesn't love stuff on her head (e.g. a helmet)), but we're going to give it a real try. The family who started it is incredible. Georgia seems interested. And I really feel...
welcomed.
*****
One nice thing about having to be up and at 'em so early is that we were then rearing to go. We did so much today and STILL managed to get naps in. (And boy, did we need them!)
We went to an PTA event at G's school (more on this (school in general) to come as well), and this evening we went to a party with some friends from church where all the dads played music, the kids played games and the moms? Well...we hung out, sipped warm spiced wine, and talked.
HEAVEN!
We weren't always able to do this stuff in the recent past. Georgia's anxiety really sort of put the damper on a lot of things.
But...(knock wood, throw salt, cross all appendages) it seems...to be...abating.
It's not every person who figures out their natural talent in life at two. Sign this boy up for the circus!
The Amazing Ringo!!!!
(He figured this all out on his own this morning at random. The spoon is not sticky or anything and he has done it over and over again on command! Although now that I think about it, I think his Grampie showed him once when he was about a year old.) (Don't mind the bug bites on his forehead.)
1. Seriously, Comcast, why does our internet go out every five minutes necessitating the need to unplug and replug the coaxial cable every time I want to say boo?
2. Seriously, Rainer, yes, it's true, we put your crib in the attic. But PLEASE FOR THE LOVE OF EVERYTHING GOOD AND HOLY, that doesn't mean you have to start getting up two hours earlier EVERY day(before 6am) and losing your shiz by 10am and at The Y and in the grocery store and because I gave you too little or too much or too medium an amount of milk. G is starting to look like the rational patient one and you know I've already painted her out to be a pill enough times for people to start questioning me!
3. No. Seriously. I can hear you. Take a nap. You are KILLING me. And if you wake up your sister (who IS napping, like a good little princess) I might implode.
4. Dude, seriously, I would call you a prince if you would close your eyes and sleep.
5. Seriously-seriously? Georgia rocked it at a doctor appointment on Tuesday. She used WORDS to let us know she was not exactly thrilled with the situation instead of breaking down or having a tantrum or even crying!! I was and am SO SERIOUSLY PROUD of her!
6. You know what I took seriously? That Y Fitness Challenge. A little brag? Our team won. And I came in 2nd place out of 41 people for most weight lost! Boo to the ya. Seriously.
7. Okay. Last thing. No, seriously. Fer realz. This is the last one. REALLY. I get it. I am a total nerdling.
We're still waiting on delivery of Rainer's balance bike, but we got Georgia out there on her new adapted tryke yesterday. It's supposed to rain all week, so I am glad we got out there when we did! It took a little adjustment (mainly, we had to find the right pair of shoes), but once she got going she had fun. I think it really works her legs even though right now we are pushing her. I hope (and think she will) get to be a little more indpendent before too long.
This was her first time on, lacing up!
Then we ventured out into the alleyway (but we still hadn't figured out the best shoes yet. (It was trash night so trashcans abound in these pictures, though I tried to crop them out.)
Check me out!
The view from here.
Rainer rode along on his tryke, too!
He's learning how to pedal, but he still needs help and steering, is, apparently a foreign concept!
I tell you though, trykes, bikes, helmets, etc? Feels like we have BIG KIDS on our hands!
While there was certainly an element of stress added to our last week because of the PTing, G ended up getting a pretty bad cold on Sunday which, I think, attributed to some of the behaviors we were seeing. She took a couple days off school (and is off today b/c of an early dismissal) and though she is still a little stuffy (Rainer's got it too and we were up with him several times coughing overnight last night) she seems to be on the mend.
Despite the kids being sick, this week has been much better. It helped that Alex took some short days at work. We did decide to go back to p/us because of all the stress (and the sickness/behaviors) and it seems to be going well. We are still bringing G to the toilet at regular intervals and she is doing really well. Today she has stayed dry all morning and she has asked me TWICE to go sit!
So while last week I was feeling like a failure, this week I am realizing we just need (and will continue to need) to strike a balance and do what works for us. It's definitely something we will need to suss out as we go. I feel VERY encouraged by the fact that she is telling us when she needs to go and willingly sitting. I have hope! (And I didn't last week.)
Today when I was preparing breakfast, Rainer came in with no bottoms on saying he needed help putting his pants back on. Seems he had taken the initiative to sit on the potty himself. So. Bonus! It'll be awhile with him it seems, too, but I'll take his initiative!
::
This is going to be the spring of bike riding! G's grandparents sent her an adaptive tryke (it has a bucket seat, adaptive pedals and a push bar) and we are so excited! Georgia's PT wrote to me a couple weeks ago and told us she is having a lot of success with the tryke at school and we wanted to continue that progress at home. The fact of the matter is G is still "plopping" a lot and will often not willingly walk along with us. I think this is a result of her anxiety because if she SEES the destination (and likes it) she will usually walk. It's when the destination is unclear that she has more trouble. Though...not always. Sometimes it's just plain...Georgia.
It makes going anywhere a real challenge with the two kids. Up to this point we have been using the stroller when appropriate and double-teaming them when we can, but we need something more at our disposal, for when both parents are not there. We thought about getting a wagon, but the wheels on a wagon aren't great and come to find out, the weight limits on those things are ridiculously low (our two kids would already be almost two big for most of them). The tryke appeals to us because it would promote independence, she can learn a new skill, and she can get exercise instead of just being pulled (or carried) (or pushed) around.
I was worried about her still being in a stroller at 4yo, and though I have been assured by many friends that it is common for 4yo to still stroll, I like that this is a little more independent and age-appropriate.
I don't know if this would be so glaring to me if I didn't also have Rainer who is usually quite willing (and excited) to walk. I am sure we will still use the stroller at times, but options are good!
Speaking of bikes, we scored a great woot for Rainer the other day. We'd been thinking about getting him a balance bike ever since my dad brought them to my attention last fall. We thought he was too small at the time, but he's growing like a weed (and doing all that active boy stuff quick quick quick) and like G, somewhat overnight it seems he is ready. I almost bought one full price the night before my friend told me about the one-day deal, so we scored him a Skuut metal strider for $39! (Usually around $90.) We're waiting for it to arrive, but we got the kids helemts yesterday and they have enjoyed trying them on!
Yes, G's head is TINY (we have to adjust the helmet to the absolute SMALLEST setting). No, she doesn't love it (but she's going to have to learn to at least tolerate it). And yes, that IS a hand-me-down girl's Halloween shirt Rainer is wearing. This is also a FAKE smile.
::
More on G's behavior. She is definitely going through some developmental leaps. She is talking a lot more. Somewhat overnight. So, I have to remind myself that her pattern in the past has been to go through these tough times and when all is said and done we have a new skill to celebrate.
I wonder if it is painful for a catterpillar to turn into a butterfly?
::
Georgia is loving the iPod the last couple days. I was surprised yesterday to learn that she knows not only how to identify objects, but how to identify them based on their features and funtions. We have an app from Kindergarten.com that asks "Which is flat?" or "Which one tasts sweet?" etc etc and shows three choices. She is pretty good at it and, I, admittedly, am surprised. This is a whole different "level" of language understanding and, I guess I truly DON'T understand how much she understands--but it's a lot! I pretty much feel like the iPad is going to be a true asset to her learning and SHOWING what she knows as time goes on. What a great tool!I don't want her to become a "game-head" or whatever, but I am loving technology!
::
Finally, because we had a video of G the other day, I thought it would be only fair to post one of Ringo today. Rainer struts his stuff. (I am sure this will primarily be of interest to the grandparents!)
