Wednesday, November 30, 2016

Clockwork

This girl.
Her brain is always working. Constantly taking in her surroundings and applying her skills, her knowledge, her experiences. I can see it in everything she does: every moment of play AND disobedience.
At the root of Ruby is such an intricate clockwork...it reminds me of her sister. When Maddux was little (and still!) she would say the most random things and they would often come out of left field, indicating she was thinking great amounts of things in her momentary silence. Ruby does the same thing, even though she doesn't have all of the words yet. She will sit down to eat with me and 'talk' as she acts out something she's remembering from our last meal together, or something she saw on our errands. Ruby will remember something specific about every place we visit, every person we meet, and she'll repeat or point out that something every time she's there, or mimic it when she sees that person again.

Here are a few examples of her inner clockwork:
  • When I do flashcards with her, not only does she tell me what the word is most of the time, she hops out of her chair to go find or point it out to me in the house too.
  • Every time we pull into the neighborhood, EVERY time, Ruby says, 'hooohhm'. 
  • When we tried on our snow gear this year, the kids put a pair of ski goggles on Ruby. They told her they were goggles, so she immediately lay down on the floor and pretended to swim.
  • She will tell me ("sahhhh") if she sees someone (in person or in a book) that is sad, and she'll make a sad face.
  • While Ruby was in chemo, there were occasional eye drops we had to administer. I would lie Ruby on the floor and 'hold' her arms by her side with my knees, though she didn't mind too much. The other day I had to give her some drops, which I told her about at the end of lunch. As soon as I got her out of her high chair, she ran over to the carpet and got on the ground, pointed to her eye as she squinted and said, "eye". That girl still remembered.
  • She watches those around her with intense absorption: Maddux wore a button-down shirt today and wanted me to cuff her sleeves. Ruby watched me quickly unbutton the sleeves at the wrist and fold them over twice. As Maddux walked away. Ruby pinched her wrists (she had on a long sleeved t-shirt) and held out her wrist to me to fold.
  • When walking upstairs with one of her baby dolls this week, she started by holding the doll's hand. Then she asked, "shoo shoo?", and put the doll on her shoulders and she said, "sssshoooo!". Guess what I do when we go up or down the stairs? I give her the option of walking, holding hands, or "choo choo", on my back.

Monday, November 14, 2016

Clowning Around

I had the unusual opportunity to photograph some clowns last week. While Ruby was in the hospital last year, we were entertained several times by Atlanta Clown Care.
 Ruby absolutely loved the clowns, and I loved taking pictures of their interactions.
The organization used some of my photos on their page, so they had my contact info. About a month ago they called me to request more 'official' photos. The Atlanta branch is starting a new venture (same 'service', different name) and can't use any of their old promotion stuff.
When the clowns visit kids in the hospital, they entertain and leave them with what I would call trading cards. They are small cards that contain a photo and the clowns name and a few 'fun facts'. All of that must be redone for for this new company, so they were in need of a photographer.
I was happy to oblige; the service they provide hospitals and patients is one that is very valuable in my eyes. Once we confirmed the date and time, my clown contact begged me to bring Ruby along. And when I told her that I never bring my kids because they would likely distract me, she assured me that with about ten clowns around, Ruby would be plenty distracted herself and it would not be a problem.
So my sidekick and I packed up for the afternoon and drove south. Ruby was smitten with all of the make up, the clothes, the music, the heart and soul. She kept throwing one of the juggling balls with one clown, then sitting and listening to another play guitar, then laughing at the antics of yet another.
As we were finishing, they asked for Ruby to be in a few photos as well. She hopped in and acted like a total pro: seriously, I didn't have to place her or guide her or anything... First photo shoot with Ruby was a total success!

Saturday, November 12, 2016

Good Week

Taste and see that the Lord is good; blessed is the one who takes refuge in him. - Psalm 34:8

This last week was good. REALLY good. Ruby had a few good days at school where she continued to call to her classmates by name (as best she can say them, which she is improving on daily). Ruby had speech with her myofunctional therapist and continued to improve on her 's' articulation. Ruby pulled out several words in her daily life without any prompting. (She focused intently on saying 'blueberry' as she ate blueberries this week, she said "come" to me more than "mum", she told me several times: "mom. come. sit.", and she has tried to tell me about events that just passed (like someone just putting on their shoes or coming home).)
But the best thing about this week was playdates. Ruby had three playdates! We had no school on Tuesday due to voting, so Ruby and Maddux were home with me. We invited friends over, one of Ruby's best friends, and played for a few hours in our front yard. The girls had a blast, and it was so fun to Ruby in action with her friend. The two of them took turns pushing each other in one car and then they rode together in another car.
The next night we had friends over for dinner; they have a little girl just a few months younger than Ruby. Ruby was an AWESOME host to her, inviting her to play with all of her things and doing her best to interact. Two days later, she (the other little girl) asked her mom if Ruby could come over to play at her house. The girls had a blast playing kitchen and legos and dress-up.
Cannot adequately explain the coolness of this. My girl has friends.

Thursday, November 10, 2016

Soccer Star

While the first few weeks of Ruby's 3-year-old soccer experience were not ideal, her season ended well. I posted a video from one of her first two times on the field: they showed her somewhat participating. However, most of the time, she was not into it at all. It shocked us because Ruby loves to kick the ball in the front yard and on the big field when we go for Maddux's practices and games. And my girl is not shy in a large crowd. For whatever reason, the combination of the two, plus two parents and two siblings 'supporting' you during your session was too much. Ruby didn't like to participate and was very moody the whole time.

Thankfully, she turned it around for the last two practices, really rising to the occasion. On the second to last day, they did a few scrimmages and Lehr caught this awesome clip. It totally shows who Ruby is at the core of her being: a champion for others. That kid on the other team ran by her to score a goal and all Ruby could think to do was cheer her on. Love. Her.
On the last day she had a great time maneuvering the ball around when asked and joining in a little scrimmage at the end again. Here is a video from her last day:

Tuesday, November 01, 2016

Halloween

The kids were the ones to suggest a family costume this year, so this girl was all kinds of excited. Early in the summer they decided on Star Wars, Force Awakens version. We pulled up photos of our characters and figured out which specific pieces we needed to buy or could make. Then I went to countless Goodwill stores over the course of the next few months. Eli's was a no-brainer to pull together, but Maddux's and Ruby's were trickier. The weekend before the Little 5 Points parade, I caved and took them to Target. All three for $20 each. Honestly, cheaper than it would have been to make them, likely.
In the end, Lehr didn't end up dressing up - we just couldn't pull his Han Solo together. Next year is his year, he says.
Ruby was allowed to dress up for school; I went with the bat fairy from last year for school because it was less likely than her 'real' costume to come home stained. After a quick Halloween party, the parents got to take the kids around the parking lot for a trunk-or-treat. Given the afternoon ahead of us, I didn't want to stick around too long for that (Ruby needed a nap!), but we did hit a few cars. And wow...they were awesome! So many parents took the Trunk thing to a whole new level!
The kids had a great time on Halloween, even though it was a Monday night. We did our annual neighborhood thing and 'paraded' down to the pool for pizza followed by trick-or-treating. Everything started right on schedule and we got started on the main event earlier than usual.

We brought a wagon for Ruby; I was not going to be able to carry her much and there was no way she could walk all that way. (It's a mile just from our house to the pool.) She got out every few houses and trick-or-treated with Lehr or one of the kids. She loved every second of it. A few lollipops, but no major damage in the candy department.
 The big kids had a great time, running around between us and houses with their friends. The early start allowed for more of our trek back to be in daylight. They seemed to have a steady stream of candy consumption, which I totally chose to ignore. We covered even more houses than last year (as we do each year), and they were still in bed at 8:30. Life is good!

Monday, October 31, 2016

Dance Fever

Ruby loves music. Any music. But when she hears a song that she connects with, she really loves music. And she loves to dance to it. Her taste is all over the map, but she leans towards Adele, Meghan Trainor, and (this week) Let It Go.

Friday, October 28, 2016

Intertwined

I talk about the weight of Down syndrome in many ways, but that word can be easily misconstrued. Sometimes weight goes unnoticed. Sometimes it's just the extra stuff in your pockets that you don't notice carrying around. A long time ago I vowed to make my posts as honest as possible so that readers struggling would feel the comfort in company that I have felt from other honest blogs. I know that sometimes comes across like it's lots of complaints about all that comes with Ruby's diagnoses.

So I need to set the record straight; even when I feel like I'm so far behind on all of the therapy stuff I should be doing in addition to what we do, and all of the cognitive stuff I'm missing, and all of the skills I'm forgetting to work on daily, I don't necessarily wish away Down syndrome.
Because, here's the thing, I don't think about it every day...some days it is just a little bit of extra weight in my mommy backpack. Sometimes I even go weeks without thinking about it (not during the school year). And I can't imagine where Ruby ends and it begins. It's part of what makes her her. And her spirit is so amazing, so kind and gentle and compassionate. She runs to me and hugs my neck when I return from the store. She waves and joyfully calls "Byeee!" when Lehr leaves. She calls out "E-ii?" and "Axxxx" every morning when she and I leave her room, searching for her siblings. Ruby doesn't know a stranger; she seeks a connection with everyone she encounters. She spends so much time creating meals in her play kitchen, and tending to her babies' needs, and reading books on the stairs. And if someone falls at the playground and cries, she says "boo?" (as in 'boo-boo') and rubs my arm, asking if she can go comfort them. How much of that would be present if she didn't have Down syndrome?

Wednesday, October 26, 2016

Swim, Little Fish, Swim

I love reading blogs by other moms. I've been doing it since the beginning of the Internet. When I find a mom that has a shared experience with me (which they all do because they are, duh, moms), I often hear my own voice in their words.
This is definitely true for this post. It appeared on a blog by a mom I admire from afar. She has so many children and two of her younger ones share Ruby's number of chromosomes. When she posted another blogger's words this month, I found myself reading and rereading the same words daily. It's just that good.

I love what she says here:
If we do not create space for people with Down syndrome to be, I don’t know… people with Down syndrome, then we will forever be trying to make them something they are not. Like good ol’ Einstein once said, “But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” 

Can I get an amen?
In some of my most frustrated moments I often find that I am totally holding Ruby up to standards of older children we happen to be surrounding ourselves with, or kids with excelling abilities far beyond her capacity, regardless of her extra chromosome. I don't judge Maddux's intelligence based on Eli's ability to create lego masterpieces, and I don't hold Eli accountable for writing and drawing with the depth his sister does. So why do I feel the need to hold Ruby at a baseline that is set by others?
Somehow I manage to get myself so off-track that I stop seeing the amazing heart and worth of this child in my search for her success in speaking with perfect articulation or completing a task for the sake of checking it off of our to-do list.

When we are having our best days - when I see Ruby excelling, when I see Ruby shining in a crowd of status quo - it is when I am able to look at her independent of any standards or comparisons other than her past performances: I see her amazing progress and just revel in that. I see her for the awesome fish she is.

Sunday, October 23, 2016

Terrible Threes

Terrible twos, they tell you. But for our family, three is a much harder year.

Ruby is still the least drama-filled of my toddlers, but she is three and she reminds me of that often.
The week we were at the beach, she started using "NO!" as her primary word. All. Of. The. Time. Do you want a snack? NO! Can I read you a book? NO! Might I look your way? NO! Kind of ridiculous. Thank goodness it is not something that consumes her vocabulary every day. (But the days that it does, I just might pull out some of my hair.)

Ruby's always been 'wreck it Ruby'...it's likely her rougher nature in playing has to do with often playing with older kids (her siblings and neighborhood friends are all older). She tends to be the kid that will walk through the streets built for matchbox cars or collapse the block stack built by others. It's all a game to her. And we don't have WWF matches in our house, but tickle battles break out with Daddy on occasion, and that always means on-the-floor-dogpile-type interactions with Daddy and the big kids. That may be why when she is with boys at gymnastics that start to wrestle around, she joins in and lays on them. And her love for being social means she will violate your personal space when she says 'hi', and it may turn into a take-down hug or a 'shove' as she feels she needs to make contact. (We work constantly on 'shake hands to say hi' to give her that contact in another way.)
Most of it I can take in stride...some places have me more on edge than others, but I don't lose too much sleep over serving size interactions with kids at the park or in most of our days. School is hard though. We had an incident one of the first few days where Ruby picked up a little girl's hand and bit her fingers. No prompting...just did it. Then she bit another child's back last week while they were out on the playground. We talk about 'mouth closed' very often at home (in fact, whenver I get Ruby dressed and she has to lean on my shoulders for balance, I always remind "mouth closed" a few times to make sure we don't have an unintentional bite), because I haven't seen her do this with an obvious desire to hurt. I'm not sure if that makes it easier or harder to deal with.

It's always hard when your kid is showing a behavior that makes you uncomfortable. That doesn't go away when they're older: Maddux and Eli still do things that I wish they wouldn't. But the younger stuff is where my focus is now, and it's probably because I feel the magnifying glass is so large on Ruby in general. There are so many times when we encounter something with Ruby that causes all of us to wonder how much of it is toddler stuff and how much is Down syndrome. At the end of the day, she's smart, but developmentally she's delayed to the point of being only just about 2years old. That means things still go in her mouth more often than with her friends and she's still figuring out social behaviors that her typical peers have likely worked through already.
And my girl is a copy-cat to the highest degree. Ruby learns so much from watching others, which can be a great thing. Unless it's a behavior you don't want her to choose. Like when kids start pushing each other a little. (She thinks it is a game and laughs as she starts to shove). Or when someone decides to spit. Or any other number of things that toddlers do. That doesn't mean she only strays outside of the lines when someone else does first, but it does add to the complexity of the situation when we work so hard on correcting a behavior only to have it come crashing right back in when Ruby sees someone else do it once.

Saturday, October 22, 2016

Soccer Girl

Maddux is back on a soccer team. She didn't think she wanted to play this season (she hasn't in a few years), but changed her mind just after the deadline and asked us if we could get her on a team. We were more than happy to try, as usually we have to push Maddux a little to participate in team sports. (This is usually a source of frustration for me because I see so much potential in Maddux when it comes to anything sports related; this girl is a natural athlete without even trying.)
So far, Maddux has scored at least one goal in almost every game and loved every position she has played. She (of course) has made fast friends with all of her teammates, and she's already asking if she can play again next season.
Done like dinner.