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.

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?

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.

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.

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.

All It Takes

These days my overall outlook, and mood, sways abruptly and severely from one side to the other. Optimism to pessimism. Encouraging to bleak. Joyful to depressed. When you invest so much time in 'training' someone, it's hard to separate yourself from the performance. As parents, we all experience this at various stages. I find it's exponentially more with Ruby than with my other two. The hours researching and implementing therapy strategies, the nights spent praying that tomorrow is 'the day' some skill emerges, the dollars spent on therapy sessions and materials...it all consumes so much of my time that when the wind slightly blows us off-course, I tend to crash. These are not good days, as Lehr would tell you. On these days, all it takes is one more instance of Ruby mis-articulating a word we've worked on forever, or acting out in a typical 3-year-old way for me to feel utter defeat. The metaphorical straw that broke the camel's back. It absolutely amazes me at how fragile I feel some days.

Thank God for the flip side. So many times I will be over the moon ecstatic because of something Ruby did, and when I tell someone about it, I will hear myself and think "this is so silly because it's so small". But I know it's not small - it's that word we've been working on forever, it's that skill that seems to always trip her up, it's that behavior that we have been trying to modify for as long as we can remember. When we have a breakthrough, nothing can tether me to the ground: I'm on top of the world.

Yesterday was one of those days. All it took was one of Ruby's therapists sitting in during her preschool class for one hour. All it took was her letting me know that Ruby talked a lot. All it took was her giving me the awesome news that Ruby was playing with friends - and they were playing back - on the playground. All it took was Ruby being her usual talkative self during Spanish to remind me that she can do it at school...just has to be where she chooses. All it took was Ruby using her mouth as best she can to form approximations of almost all of her classmates when we drilled their names before school. Yesterday was an amazing day.

That's all. It's the little things.

Maddux - My Love

Oh that girl.

As of late, I've been able to sneak little moments with her: before bed, after school while Ruby's napping, running errands. Random, unexpected moments that pop up when we definitely didn't plan them, but they allow for conversations. Thank you, God, for that.

Maddux is one who changes her mind about things often. Within a month she told me she did NOT want to go to Eli's school when she started 6th grade for the sole reason of not wanting to wear a uniform, only to reverse her story and tell me she definitely wanted to attend so that she could wear a uniform. And she seemed to have no recollection of ever feeling differently about it. That being said, she has some things at her core that I love and that seem to remain, regardless of the season  we're in.

Maddux wants to adopt. Dogs and kids. She's long since asked for a dog, and she would be an excellent caregiver; we have no margin for another living thing in our house. But she dreams about the day when she can have dogs, and she wants to adopt them. Maddux has also always wanted to be a mom (which means she wants kids). Recently she told me she wanted to adopt her children. We know a few families that have adopted, so it shouldn't come as a surprise to me, but it still reminded me of her beautiful heart.

This girl loves soccer. I'm so glad she asked to play again! Maddux is a dynamo on the field and she has made some fun new friends on the team. We are hoping she wants to play in the spring so that Lehr can coach her team.

Finally, Maddux joined a running club for the first 6ish weeks of school. Once a week after school she would run from 1-3 miles. Though running is not something she usually enjoys, she's fast. REALLY fast. And she had a friend in the club, so she had a good time logging the miles. Two outcomes: she asked to do the running club again and she is the fourth fastest girl for the mile in the entire school. So proud!

Head To Toe

Last week I discovered the COOLEST theater for Ruby to visit: Alliance's Theater for the Very Young. I've take the kids to the High Museum once or twice when they were younger, but we've never attended Alliance, and I never knew this particular opportunity existed.

I chose to take Ruby during the Eric Carle production. Tickets for Ruby, Lehr and I were only $20 total, so it was a no-brainer. The performers consisted of two dancers and one musician. They acted, danced and sang out movements and sounds of each animal from head to toe (just like the book). The kids could participate if they wanted; it was very laid back. We will definitely be going back!

A Day In The Life

Ruby. Never would I have imagined a 3-year-old could have such a full schedule. This girl has anywhere from 2-4 therapy sessions each week with a therapist (and countless at home with me), three days of school each week, gymnastics once week, at least two trips to Gigi's each month, and then there's always a doctor's appointment in there too. When we get a day at home with nothing, it is more than rare, so we try to capitalize on it by staying home and playing in the yard and house all day. Yesterday we had one of those days.

I decided to pull out the video camera to capture just a few minutes of what keeps us busy on those days. This always serves as a good reminder to me of all of the very typical things Ruby does. She loves music and attaches herself to songs without any prompting by me. Ruby loves to feed (and diaper and care for) her baby doll(s). Anything that we do surrounding therapy engages Ruby and she is usually happy to participate. She loves books, and is so proud of herself that she recognizes and names most of the letters of the alphabet. And even though I didn't get to capture too much of it, this girl is having multiple conversations with me throughout our day. She says, "baby" "shoes" "mama" "OK" "whasssat" and so many other staple words to give me snapshots of what she is thinking.

Big Boy Baseball

Eli's love for baseball has spanned his entire life...he has held the game so close to his heart that even at the earliest of ages, it was obvious to us: we met that by giving him a baseball tee for his second birthday. While he has dabbled in soccer and basketball, his passion has always been for the diamond.

I can't help but think back to the early days...I remember the day I took this photo.

Eli was not even three years old. We visited Fullers Park for a picnic dinner and ended up (of course) on the field, with Eli practicing some pitches, and then us pitching to him so he could run the bases. This was a no-brainer fun night for Eli...he has always, even at two, loved everything about baseball.

Tonight I sit at Fullers Park, as I have so many nights since he turned four and started playing 'for real', watching him play. Tonight I sit watching his game at the same field we played in that night, the 'big' field where the next to biggest kids play their games. Tonight he stands on that same mound he stood on at two years old and he pitches as one of the big kids. And I can hardly stand it.

Soccer Clips

I mentioned that Ruby loves soccer and loves people, but does not seem to love soccer with people. We got some video this last week so you could all see her in action. Keep in mind that we only caught her moments of somewhat participating. (Just like on FB, you're only seeing the good moments.)

Speech Update

So many good things happening with Ruby most days. She is talking so much and we are understanding more and more of it all of the time. The sound her myofunctional therapist has been working on for over a month is "s". Ruby has been saying "s" for a long long time, but the primary focus of the myofunctional therapist is correct placement: lips, tongue, teeth. So while Ruby makes it sound fine when she says "s" with her tongue peeking through her teeth, that will relax into a lazy "s" before we know it, so we tirelessly work on getting her tongue up and correctly placed. Ruby does give us many opportunities to do that as she loves to identify letters when she sees them (in books, on clothing, on signs), and "s" is one of her favorites!

Ruby is also 'singing' like it's her job. If she hears one of her songs (she attaches to random songs on the radio), or if I start to sing a song she knows from preschool or therapy, she locks in and owns it. Sometimes she holds her imaginary microphone too. I love that for so many of these songs, especially the preschool or therapy ones, I can leave out words and pause and she'll fill in the blank for me.

Finally, new words are popping out all of the time. I dropped her off at preschool this morning and she hugged me at the door and said, "Bye, mom", totally unprompted and before I said "Bye" to her. She also picked up a more successfully "shoe(s)" this week; she often goes into the mudroom and empties the shelves as she matches and puts on all of our shoes. This week she's been naming them: "E-i. shooo. Addy. shoo. Mum. shoo. Ax. shoo." And her approximation on a few names from her class are starting to happen as well.

When Down Syndrome Caught Me

That was how she titled her submission.

Maddux was assigned a "Reflections" project the week before Fall Break. As usually happens, we didn't really catch wind about it until the day before we returned to school. And it is due tomorrow.

We discussed that, while I love that she wanted to do photography and I want to devote time to that, we didn't have time, so Maddux was going to have to come up with her theme and plan quickly. And it would have to include a photo shoot in our yard.

The first thing Maddux had to do was decide on her focus for the project. She was to create an original piece of art that represented 'my story'. So I asked Maddux what her story was.

When she answered, "Down syndrome", I was immediately stuck in that place between being wanting to hug her and tell her how insanely proud/impressed I was and wanting to hug her and tell her that Down syndrome doesn't have to be her story. The thing is, that is who Maddux is: she takes on other's everthing and makes it hers as well. She's kind of amazing.

But this project is supposed to be totally from and of her, so I asked a few follow up questions, to make sure she understood what she was choosing. She gave good explanations, so we moved on. Because it is days away from the deadline, I helped her come up with a quick timeline: brainstorm, gather materials, take photo, edit and print. Most of that took place over the last two days: tonight was edit and print night.

First off, she took some REALLY nice photos. I set her up on an auto mode and let her shoot, knowing she would be able to produce and image she could slightly edit the lighting of later, if she wanted. She 'ran' the shoot with Ruby on her own...Lehr and I were there to offer assistance if requested, but it was her photo shoot (all of about five minutes long). What she captured in those few minutes was great though; she knows how to bring it out of Ruby!

The photo Maddux chose to edit for her submission is beautiful; it was in my top three picks as well. While the style of editing she chose was not my preference, it gave a beautiful focus to the lighting she shot in. I saw some cool elements in there, but kept it to myself, not wanting to alter what Maddux might think about her picture, especially as she wrote about it for her submission.

That's where it got crazy good: the writing portion. In 10-100 words, Maddux had to give an explanation of her piece. The theme was "My Story". As Maddux read to me what she wrote, I couldn't believe the beauty. When she finished, I asked her to look at her picture and see if it matched up with what she wrote. She said, "Yes, because it's Ruby and she has Down syndrome." I nodded but told her to think more about what other things she wrote about:

When Ruby was born, we realized she had Down syndrome. I did not know what Down syndrome was, but Ruby opened my eyes to unique people. Ruby brightened my world; she will be my light forever.

As she read the last sentence, I told Maddux to look again and think about the lighting she created, how it contrasted between dark around Ruby and then her white shirt, catching the sun. (If you don't see it, Ruby stands out from the photo, brightening the space.) She abruptly laughed, the emotion of it all catching her off guard. Then her eyes got shiny and her face registered the connection. Maddux laughed and said, "Oh Mommy, I'm going to cry!" How cool it was for me to be able to witness her seeing that she had created something so symbolic even without realizing it. And words cannot adequately express all the feels I felt throughout...that girl is something special.

Little Kicker

Well Ruby's soccer debut wasn't quite what we'd hoped or anticipated. But isn't that life, especially with kids? Your expectations get built up over time so much that there is no way they will be met with any degree of overlap?

For months, Ruby has been kicking the soccer ball around the front yard. For the last three weeks, Ruby has been kicking the soccer ball around the field during Maddux's practices and games.

Today she got to have her own soccer time, during an hour long program called "Little Kickers". Three year olds and their parents converged on the field and went through various drills and games with their own soccer ball, culminating in a group photo of all of the 'players'. Ruby was the opposite of participatory.

It shouldn't be hard to understand: Little Kickers has a time slot of death at 3:00PM. Any 3year olds that still nap (as Ruby does) are late nappers, so keeping them up for that slot is hard, and waking them up is the kiss of death. We opted for the latter, leaning on Lehr's magic nap skills (he falls asleep with her in the rocking chair) to get Ruby down right after lunch. We still had to pull her out of her crib 10 minutes before we left, however, and she was NOT happy about that. Groggy and grumpy, we got her team shirt and soccer ball before heading down to the practice area. Immediately it was obvious that Ruby's body was not up to the task. She sat down as much as possible, lead-legs seemingly the culprit. She mostly participated in the stretches, aided by Lehr, but often lay down or sat on the soccer ball.

Not trying to make every post heavy, but this was hard on Mommy's heart. I was so excited to have her join a 'regular' team sport, because at this age I thought we'd be safe to assume she could participate at mostly the same level as her peers. While she was not the only non-participator, you know my radar was on her, especially when I saw kids who were like Eli and Maddux at that age, running by us, kicking with gusto. It was a low-blow in a space that I thought we would be in the clear.

Eli felt this too, which made it hard in a different way. He was all but dragging Ruby by her arms around the field, trying to get her to participate the way we've seen her do so many times before. He was emotional, the way he gets when he is frustrated with his circumstances at home. Mercifully, Ruby gave us a few moments here and there where she really got into it. Eli turned himself around, and we left in a better place.

Here's to next week.

Beach Trip

We traveled down to Melbourne for a few days during the kids' Fall Break. It has been several years since we were all down there, but the kids still remembered all of the fun things they wanted to do. Specifically: the beach, pizza, ice cream. Not a bad list. And they were very anxious for Ruby to participate in checking it off.

We stayed with Mom-Mom, traveling over to the beach each morning as soon as we got up. Eli especially loved how 'flat' the shore was; this allowed him to practice skim boarding dozens of times on breaks from the surfboard or boogie board. And Maddux went back and forth between the inner tube and the boogie board the whole time.

Ruby? Well she did it all. She loved the sand, she loved the water, she loved the boards. We managed to stay at the beach each day for at least four hours, pressing well into nap time without any complaints from her.

One night we ate at a restaurant with outdoor eating on a mini 'beach', which allowed the kids to play in the sand. We were sure to stop by our favorite beach side pizza place the last night, putting away the largest pizza we'd ever seen. The kids loved this, especially because we got to walk down to the water while the pizza was being made. That dinner had to be followed up with ice cream at our nostalgic soft serve pit stop.