Maddux Says The Darndest Things

Not much set-up needed here. Just another absolutely awesome exchange with my daughter as she prepared for her shower a few minutes ago.

"Please be careful when you take my hair band out. That part still kinda hurts from my bruise."
"What bruise?"
"You remember when i walked into the wall?........well, actually, there are probably lots of them up there because, yeah, well, you know."

I do. That girl walks into walls often. (And, yes, I've had her eyes checked.)


And then she followed that up with a conversation about her Field Day plans for tomorrow. I asked her if she had to partner up with a classmate. She answered yes, but that she wasn't sure if she got to pick her partner or if her teacher would pick. As expected, she told me that if she got to choose, she would pick D (her best friend). I jokingly asked if she thought she'd get to be partners with D if her teacher picks (the two are often in trouble for talking). She laughed and said, "No. Mommy, this is play partners, not 'be quiet' partners.......If it was that, I couldn't be partners with ANYone."
She speaks the truth.

Therapy Update

I recently realize something. Even when Ruby isn't racing towards her next milestone, she is still moving in it's direction. Sometimes slowly and silently, so much so that I don't even recognize it at first. That girl....she's amazing.

PT
What can I say....she's all over the place! Ruby is walking constantly, pushing herself to go further and faster everyday. She still fatigues and will 'drop' to a seated position when her legs run out of steam, but she is never down for long. Her walk is so fast sometimes that I would almost call it a run. Ruby is also riding/pushing around her new bike. She can totally get on and off of it by herself too, which takes more balance than I thought she had.

OT
Ruby is currently able to sort colors, sometimes even with differing objects. She plays this game with me where I think she understands that the red ball and the red button are both red, but she puts one of them in the yellow bucket just to test me. It's all in the way she gives me this sneaky look as she does it, as if to say, "Your move, Mommy." We are also working on threading big wood beads and pasta onto a cord. She does pretty well with that most of the time.

Speech
Random signs keep popping up because Ruby is very interested in mimicking these days. She will sign "cow" and "horse" and "cracker" and a few others, even though they don't have a lot of every day relevance for her. She is making more word approximations when we read books together too....that is very cool. Finally, Ruby is starting to follow 2-step directions. (Ex. Pick up the egg and bring it to me.) To be fair, most of these directions are very predictable and related, so they may not be a fair test. That's to say that when I ask her to pick something up and bring it to me or pick up the cup and put it on the table, the secondary action is often an assumed action after the first. But I'm still giving Ruby credit.

Cleaning Lady

That girl.

In the last few weeks I have often found her trying to break into the cabinet under the kitchen sink. That's where we keep a big bucket of white rags for the inevitable spills that come from life with three kids (and meals with Maddux). She will reach in and grab one and then take off, randomly wiping spots on the floor or cabinet doors.
It's almost like a security blanket of sorts because once she gets ahold of one, she doesn't want to let it go. I love it. I love it. I love it.

Of course the day I choose to take photos of this cleaning-love, she is wearing a dress-up 'gown'. Very Cinderella-esque.

Dinner with Grandparents

While Grandma and Grandpa were in town, Eli and Maddux begged them to go to Ted's Montana Grill. We seriously never go there (maybe twice in their entire life?), but when my mom comes to town, Eli insists on it out of tradition. (Kind of a self-fulfilling prophesy.)

This year it was all four of them, and Maddux and Eli dressed up in their new clothes and all for the occasion. I have been assured that the kids were very well-behaved and chatty in a very awesome way. A few nuggets I heard about afterwards:

• Maddux asked Grandma, "Can I get the $15 bacon buffalo burger?" I can only imagine that this comes from a conversation I had with them recently about manners when someone else takes you out; we discussed the importance of being aware of how much things cost so as to not order the most pricey thing on the menu.
• Eli commented to my parents and Maddux that the waiter was great, "He is seriously the best waiter I think I've ever had!" My mom encouraged Eli to tell the waiter, to which Eli refused, likely out of embarrassment. So when he returned to the table, Maddux said, "You are a really good waiter!" When he thanked her ('little lady'), she said, "My brother was going to tell you, buuuuuuut (quick look at Eli, who is embarrassed) he didn't."
• A conversation about Ruby came up and both kids raved about her as a little sister. Eli said she was the best little sister in the whole world. Maddux said she just loves her so so much. She said something to the effect of, "I know she has Down syndrome, but that doesn't matter cuz she is the best best best." Both kids talked a little about DS with my parents and confessed that they both worry sometimes that people will make fun of her. That's another conversation we've had recently, but I didn't realize it was weighing so heavily on their minds.

80's Day

Eli and Maddux's school has gone into spirit day overdrive. There are dress-up days all of the time right now. And I love it!

Today was 80's day, which I didn't even realize until the kids came home. Eli started talking about it during snack....he started formulating his plan about a boom box to wear on his shoulder.

By bedtime, Eli had made a cardboard boom box, created a blingy necklace, and gathered his clothes for the morning.

We didn't have as much creativity surrounding Maddux's get-up, but I think Lehr did a smash-up job of fixing her hair, 80's-style.

Junior Golf Course

Eli has long since enjoyed the sport of golf. Lehr sawed off an old golf club when Eli was younger - maybe four - and Eli's been putting and hitting around the yard every since. Whenever Grandpa Jim and Eli are together, they go to the driving range, and the last few times have resulted in 9 or 18 holes.

When Masters week rolls around, Eli's fondness for the game increases, as one might expect. This year it was heightened even more because a visit from Grandpa Jim coincided with Masters week. So not only did they visit the local par 3 course, they also created a course in our front and back yard. It was all Eli's idea (so I've been told), but Grandpa definitely helped in the manifestation.

So El's "Junior Golf Course" includes a sign, tee markers for each of the ten (five, repeated) holes, and a flagged 'hole' in the front yard. Eli chose five different spots in the front and back yard to tee off from, all aiming towards the same hole. He even named one of the holes "Azaleas", just like in Augusta.

While Grandpa Jim was here, there were a few days that the duo had an early tee time. Since then, he's hurried through his homework each day to get four or five holes in before the rain hits, or before soccer practice. On his own, Eli even changes into proper golf attire (a polo shirt and plaid shorts) before hitting the links.

Roller Rink Rockstars

Last spring break, I took the kids roller skating for the first time. They loved it so much that we returned to the skate rink a few days later with the Marshalls. That has stuck in the kids' heads for the last year and they've been talking up our 'tradition' of skating with the Marshalls over spring break for the last few weeks.

On the last day of spring break, the older kids and I joined our friends for an afternoon of craziness. All five kids laced up their skates and fell around the rink.


All except Maddux: she soared around.

Eli, Drew, Davis and Emmaline used the PVC pipe 'walkers' for a little bit, and then they mostly-fell-sometimes-skated for a bit, then they mostly-skated-sometimes-fell for the rest of the time.

Eli was just as unstable on his feet as he was last year. He smiled the whole time, but he didn't spend more than a few steps on his feet each time between falls. In addition, he couldn't help but dance to each and every song that came through the speakers. That didn't exactly help his balance.

When it came time for a few games, Maddux joined in immediately. She lasted a decent amount of time in their balloon tag games. Then they announced that they would be doing races. She stayed on the floor and lined up with the 6-10 year old girls. When they lined up, Eli called out her name; when Maddux looked over, Eli gave her a thumbs up and said, "Win!". (Color me shocked...Eli doesn't typically encourage his sister!)

The staff skater counted them down and they took off, with Maddux in the lead. She held her lead for almost half of the race before she was overtaken by one girl. Smart girl that she is, Maddux didn't back off. This was a great strategy because said girl tripped a few paces after passing Maddux. She was rewarded for crossing the finish line first with a slushy from the snack bar.

Just before the races, Eli and Drew traded in their skates for roller blades. They seemed to be a much better fit for Eli; he suddenly had better balance. That doesn't mean he didn't fall any more, but he and Drew were able to make it around the rink between falls in the blades.

Big Kid Day

When my parents secured their travel plans to stay with us for Spring Break, one of the things Lehr and I planned to do was take the older kids out all day and do things that are a little harder for us all to do when we have Ruby with us. Once Grandma and Grandpa arrived, we let Eli and Maddux help us pick some things to do that day.

We started out at the skate park; both Eli and Maddux skate boarded. It was a beautiful morning, so we stayed longer than originally planned, but no one was complaining. Eli even shocked us by trying something very new, all motivated by himself! He rolled into the pool, unassisted! The first time he came down, Lehr was there to catch/steady him, which he needed. But then he realized what he did wrong and how to change it, so when he rolled in the second time, Lehr didn't touch him. Then he did a third and fourth time and went back and forth up the sides a few times. On the last one, he fell pretty hard (he wasn't wearing knee pads), but after a short break he was back out there.

We stopped for a quick smoothie and then drove to our favorite mountain biking spot. We go there often enough, but I usually just hike with Ruby while they ride. This time we all got to ride. Eli ate it on the BMX trail, causing him some pain, but all in all, it was a great ride through the trails and on the BMX section.

Lunch was next on the list: we stopped at a pizza place to share a quick pie before hiking. We didn't hike very far...maybe 2 miles...but we did get down to the creek. This is something we do with Ruby a lot, but she is not big enough to sit on the rocks in the creek yet.

The kids started talking about playing tennis while we were hiking back. We grabbed our rackets and went to the courts in our neighborhood. (Let it be known that none of us actually plays tennis, so this was to be mostly a chase-the-ball type of activity.)

Finally, we were all exhausted and dinner was on our mind. We knew we'd have to go to the house quickly to clean up, but we didn't want to upset Ruby by letting her see us after being gone all day only to leave again. The kids were amazing; they even conspired with each other to put on their new clothes from Grandma and Grandpa for our date out. We went to Grindhouse for our favorite burgers, and even let the kids share a milkshake.

Such a fun day....it was really cool to be able to hang out with Eli and Maddux and focus all of our attention on them. We definitely will do this again!

Easter

In the last few years the older kids have become very fond of Easter Egg hunts. Not necessarily for the goodies inside of the eggs, but for the hunt of the eggs themselves. Last year we stepped up the game and bought a pack of the nature eggs that look like grass and rocks. The kids had time trials to see who could find all of them fastest.

We had our neighborhood egg hunt the weekend before Easter. The kids helped put out eggs for the younger ones (including Ruby). Ruby did not get overly excited about the eggs: we had to wake her up from a nap for the hunt. Eli and Maddux found their 12 eggs and moved on to playing with their friends.

But when it came to our family egg hunt, they were all business. After church, we put out several dozen (empty) eggs in the backyard. Eli and Maddux ran around like crazy to find them all. Once they found them, we hid them again. And again. They even hid them for Grandma Cathie and Grandpa Jim to find. Egg-Mania.

After they finished with that, Grandma Cathie guided them in making chocolate 'nests' and decorating them with peeps and chocolate eggs. Yeah....they kinda liked that activity too.

Fire!

Both kids have been studying a fire safety unit over the last few weeks. Eli and Maddux each have special fire safety workbooks and they are scheduled to take a trip to the local Fire Safety Village. (If you don't know what this is, seriously cool. We had nothing like this when we were kids! It's a series of buildings and streets designated to teaching fire safety (and bus safety, and street crossing safety, and and and) procedures.)

Eli's main assignment was to draw a floor plan of his house and complete a fire safety plan. Then, he had to put his family through a fire drill to practice that plan. We've talked as a family about this before, so Eli was pretty well-informed about what to do, but we'd never actually gone through a drill. He insisted that we all go to our rooms and wait for him to blow a whistle and then follow our procedures exactly. He even wanted us to put Ruby in her bed to practice getting her, but I vetoed that given her likelihood to be less than excited about being dumped into her crib a good hour before bed time.

Eli blew the whistle and we all followed our plan, leaving the house through our assigned exits and meeting at our safe place. Once we finished that, he wanted to practice what we'd do if the kids couldn't leave their rooms because there was a fire in the hall. While we didn't actually climb out of the windows, we did have the kids stay in their rooms and go to the window to wait for an adult on the outside to give the all-clear.

Once all of THAT was done, Eli then reminded us that we need to do it once/month to remember what to do. Love that boy.

World Down Syndrome Day

World Down Syndrome Day was last Saturday, but the after effects are still being felt in our house. We've heard so many stories, seen so many pictures, witnessed so many videos.... I thought the Buddy Walk last year was amazing in the overwhelming support we saw. This topped that. Not because people supported Ruby (even though I realize she is at the center of it for our friends and family), but because people were bringing good awareness to Down syndrome in general.

We asked Team Ruby to celebrate the day of awareness (3.21) by wearing different colored, different patterned socks. The idea behind that is that you wear mismatched socks and someone calls you on it. Then you start a conversation about Down syndrome. However, when the kids and I did this last year and I 'quizzed' Eli on what he would say when people asked about his socks, he responded "I'm wearing different socks because what makes you different makes you beautiful." So we totally embrace that side of it as well.

For those Team Ruby members that have a Ruby is a Gem shirt, or a Buddy Walk shirt, we asked them to wear that as well...another conversation starter. And because 3.21 was on a Saturday this year, we asked ANOTHER favor: wear your stuff on Friday too because you're likely to see more people at school and work.

Team Ruby members started sending in pictures (I got over 20!!) of their shirts and/or mismatched socks before I even left boot camp Friday morning (speaking of which, Team Ruby shirts showed up at camp even though I never mentioned it to my campers). People from several different states took pictures of their socks, their shirts, their kids, themselves...it was awesome! And then we got emails throughout the weekend. Our friends shared the stories of how their conversations went with their kids about why Down syndrome needs awareness, stories of talks about what Down syndrome is (and isn't!), stories of amazing kid responses to WDSD. We got a few videos of friends' kids wearing their socks and telling the camera about it, we got a video of one friend (only 7 years old!) telling his class about Ruby, we got messages describing kids telling their classes about Down syndrome (some from kids/families who have never even met Ruby!).... It has been a very emotional week, to say the least :)
 
Finally, Eli did talk to his class in preparation for Friday (so cool!). That morning I took Ruby in to his class and we took a picture together. It was amazing to see all of those kids wearing red shirts and mismatched socks! When more experienced parents told me Ruby would change the world around her, I knew they were right, but I had no idea her reach would be so big.....

Batter Up!

Maddux is well into this season of softball, but we've only had one game so far. Between freezing rain and ice storms, so many practices and games have been rescheduled and cancelled that I'm doubtful she's really getting a taste for the sport.
Regardless of that, Mad Dog had a GREAT first game. Ruby and I got there just as the girls were warming up prior to the first pitch. In her first appearance, Maddux played pitcher, second base and right field. During her inning as pitcher, she fielded the ball every time it was hit, getting it to the first base (wo)man quickly.

Maddie hit three times, getting on first or second every time she smashed the ball. She LOVED the game and said hitting was her favorite part. 


Unfortunately, Eli's soccer game overlapped, so the boys weren't there to see her debut. Eli was quick to voice his disappointment in this, which was music to my ears.

Maddux-isms

They never stop, and I only manage to remember a small fraction of them.

• We were at Chipolte for lunch over the weekend, and Maddux saw a tall teenage girl. When she passed, Maddux leaned over and whispered to me, "Mommy, I don't think she's even married but she's taller than you!"

•  Same weekend, breakfast at the house: Maddux says, "When I grow up I want to babysit my brother's kids." Eli shakes his head no. Maddux nods furiously and says, "YES! Eli, you have to marry.... Remember the 10 Commandments: 'boys will get lonely'."

Sometimes It's Just Easier

Here comes the truth train again....choo choo!

*Disclaimer: I realize that all too often these days I open up the doors to my crazy mind and let everything come out. These truth moments are just that: truth moments for me at the time. It doesn't mean 'everything is awesome' and it doesn't mean it's all hard times. It's just a result of what I'm swimming in these days. I don't write these types of posts to be a downer, or in hopes of pity for Ruby. It's just my cathartic way of working through parenthood: for Ruby and the other two knuckleheads.

I am all for inclusion. So for it. The pros for Ruby, the pros for the other kids, the pros for the school, the pros for the church, the pros for the community. We are practicing it now and planning to practice it in school, church and any other area we can for as long as we can. But, if I'm really really honest, sometimes it is just easier to not participate in inclusion.

Ugh. This is tough. I recently blogged about the D word. That plays into it sometimes, because it can be hard to surround myself with a room full of kids the same age as Ruby who have developed significantly beyond her. It isn't always easy to have her delays be so obvious. But more than that, it often stresses me out these days to be in some inclusion situations where we don't know the other families. We have had nothing but awesome times with friends on play dates and at church where Ruby interacts with other typical kids her age. But the situations where we encounter single-serving friends, or semester-long friends, those are hard. 

The moms and dads smile earnestly when they see Ruby. And they look me in the eye and genuinely tell me, "She's just adorable" or "She's so loving". But that smile changes after a few minutes of play. That smile becomes nervous when she starts to verbally protest to being held or sitting down (as all 2-year-olds do). Their laughter becomes stiff and a little forced when it becomes unclear if she will hug or tackle their child (as all 2-year-olds do). They break eye contact with her when her tongue hangs down her chin, mouth open, as she studies their face for longer than they're used to.

And halfway through the time spent at the park or class I notice that my shoulders have been tensed up and I've been clenching my jaw. Not because I worry about her hugging someone too hard, or because her tantrums are bad (because she has yet to even throw a tantrum), or because she's being rude with her staring, but because I feel overprotective. Overprotective of Ruby and the perception of Ruby. I know that everything she does will be scrutinized more than it would be for any typical child in the room because of her visible extra chromosome. How do I know? Because I was those moms that smiled stiffly and laughed nervously and looked away. Heck, I'm still that mom around some kids with other types of challenges. I think I've gotten more comfortable around most kids in our greater community since Ruby's birth, but I'm still a work in progress too.

So sometimes it's just easier for me to be with other moms who get it in a way only we can. Sometimes it's just easier because I can relax a little more when Ruby doesn't stand out. Sometimes it's just easier to be with friends that know us because they are comfortable with who Ruby is. Sometimes (choo choo!) it's just easier because when I'm in our community or with friends, then I can let Ruby be Ruby instead of trying to make her something she's not meant to be.

First 5K

For at least the last two years, Eli and I have been planning his first official 5K. We've signed up for two or three, only to have sports or travel get in the way, and he's trained up to three miles a few times without earning a shirt or a medal.

So when we found out that Gigi's Playhouse was sponsoring a 5K this spring, we jumped on it as a family activity. Lehr and Maddux planned to run and walk while pushing Ruby in the stroller, and Eli and I planned to run at a pace set by him. As expected, sports schedules came along and rained on that parade. Maddux's game would be too close to allow for her to participate, and Eli's game was going to be cutting it very close. Eli was very adamant about running anyway though, so Lehr took Maddux to her game while Eli, Ruby and I went to the race with the plan to meet at Maddux's game as soon as we finished the 5K.

Eli was SO proud to wear his green race shirt as soon as we arrived. We talked a little about strategy ahead of time, and we agreed that something around 33 minutes would be great. The main goal for Eli was just to not stop running. The organizers ran us through a quick warm-up and then the race started. Eli and Ruby and I moved through the crowd at a decent pace; I tried to slow him a little so that he didn't run out of steam too quickly. The first half was great, but in the second half we did hit a very steep hill. Had Eli not been there, I may have walked at the top because of the extra stroller weight. Eli kept going though, so I matched his stride and we even sprinted the last few tenths of a mile. Eli finished at 33:13...so very proud.

We grabbed a water and he told me, "No way could I do a 10K....that was a really long race!" He seemed fine, but on the 25 minute drive to Maddux's softball game, Eli fell asleep next to Ruby in the back seat.

World Down Syndrome Day Prep

As World Down Syndrome Day approached last year, we had just started having conversations with Eli and Maddux about what 'Down syndrome' means....I think it was that week, actually! Both kids wore mismatched socks and we touched lightly on how wearing socks causes conversations about what Down syndrome really is and isn't. Different socks, check. No real conversations, but we had pulled our whole family into this community.

This year is so different. We've had many more conversations since then about more specifics surrounding T21. Eli can even explain the whole chromosome situation to you. A few weeks ago we started talking about World Down Syndrome Day. We put out the 2015 Team Ruby shirt for people to buy and wear, and the kids started talking about their socks. Then Eli said he was going to get his whole class to wear mismatched socks. While this was cool to hear, I wasn't sure if Eli would really follow through. This wasn't anything we wanted to push on the kids, so we let Eli take the lead and he kept with it. We helped him figure out what to say to his class this week (though all we really did was listen because his plan for speaking was spot on), and we talked about the best time to remind kids (the day before).

This afternoon, Eli stood up in front of his class and told them that Saturday (3/21) was World Down Syndrome Day. He said to participate, our family and friends were planning to wear our Team Ruby shirts and mismatched socks. He reminded them that Ruby has Down syndrome and that means she has 3 sets of her 21st chromosome instead of the pair that the rest of us have. He also brought in a picture of Ruby, his Ruby shirt and a pair of mismatched socks to show them as an example of what he was planning to wear. Then he asked them to wear mismatched socks too because what makes you different makes you beautiful. AND he asked them to wear red because that is Ruby's color.

 Low and behold he got off of the bus and told me to pull up his class blog. His teacher always posts the homework on there, so I didn't think anything of it. We did, but as he scanned through it, he said, "It's not there...refresh it." I did and suddenly appeared an extra item of 'homework':

World Down Syndrome Day:   March 21st is World Down Syndrome Day (The 21st chromosome has 3 chromosomes instead of 2, therefore, 3/21  is the date.) Help us support this fabulous cause by wearing red and crazy socks tomorrow! Thank you Eli for sharing your story.

 
I was so proud! I emailed his teacher and thanked her and then asked if i could come in to take a picture of the class. Eli assures me that everyone is participating!