Open Mic

Last night an abbreviated version of the band Eli is in (99' Corolla) entered the Eddie's Attic Songwriter's Open Mic Competition. If you don't live in Atlanta, Eddie's Attic is a small venue where great talent comes through on a regular basis, whether they are known recording artists or just starting out. (John Mayer was an 'open mic' starving artist here once upon a time.) 

The boys did an acoustic version of two of their songs (each competitor had 10 minutes - there were maybe 20 competitors?). After that, judges chose four finalists to do one more song and then they picked a winner. The boys were one of the top four! 

I can't express enough - the talent present last night blew me away. So many acts from Nashville and Atlanta, and all much older and more experienced than Eli and his friends. The fact that the boys not only held their own, but were recognized as one of the top four is just crazy. I've seen all three of these boys play music in the church since they were in elementary school....also crazy. 

EP release

Big time.

Eli and his band, '99 Corolla (not HIS band, but the band he is in), released an EP this week on iTunes. Four original songs for the public's listening pleasure. To commemorate the event, they hosted an EP release party over the weekend. at said party, they performed about eight songs, only one of them not their original material. (Long live The Meters.)

I keep saying it, and I hope that I keep saying it: I love the opportunity and experience that Eli has in regards to '99 Corolla. The work ethic, the integrity, the passion, the collaborative effort, the friendships...it has all been in the black. I could not have picked a better 'first band' experience for him if I tried, and I have to believe that having the baseline experience set the bar so high will help with Eli's expectations for himself and those he works with in future endeavors.

I only got a few videos:
Song 1
New Beach Song (my new fave! Not on iTunes yet)
PK
Cissy Strut Intros (this is a cover)
Beach Song (the crowd fave!)

Team Captain

Today was another amazing opportunity day. Usually opportunities for Ruby means opportunities for our family too. That was definitely the case today!

When Ruby was living in the hospital, she and I would make a trip down to the garden area every morning (and usually every afternoon too!). We were such regular visitors that a woman (Amy) who worked in one of the ground level offices overlooking the area came out to introduce herself one morning about a month in because she'd seen us out there every day. We've kept in loose online contact over the years, even when Amy started working for the stadium instead of the hospital.

As September is Childhood Cancer Awareness month, there are 'gold' events at sports arenas all over the place right now. Our friend, Amy, contacted us a few weeks ago about attending a soccer game where they planned to gather families from all over Atlanta that have been affected by childhood cancer to form a gold ribbon on the field before kickoff. Unfortunately we couldn't attend. But a few days after I turned the offer down, Amy reached out to me again to ask if Ruby would be interested in being honorary Team Captain for Atlanta United for a game the following week. WOW!! This meant that all five of us could attend the game and Ruby and a parent would take the field for the national anthem.

This resulted in Ruby and I hanging out on the sidelines at Mercedes Benz stadium even before Atlanta United came out to warm up. Then, when they warmed up, the woman escorting us was made aware of a few extra field passes, and she asked if I thought the rest of our family would want to come down to the field too. Eli couldn't get down to us fast enough!

So we all watched the team warm up, and a few players came over to say hi (Eli's mind was blown!). Then, just before the team was about to be announced, Ruby went to the locker room entrance with our escort so that they could lead the team through the tunnel and onto the field. Ruby did SO great, grabbing the ball at the right time and standing so attentively on the field. She did not walk out like we planned (the escort carried her), but everything else was flawless. 

As soon as she exited the field, we were ushered out of the field area and back into general population. We found our seats and enjoyed the game. Both teams scored pretty quickly, but it was still a tie going into the 90th minute of the game. When Atlanta United scored the winning goal, the place went bonkers, including Ruby!

Best. Weekend. Ever.

Words can't even describe how full my heart is right now. Our weekend was full of stuff: events, work, sports, music, but we were together for all of it, which made it so so fun for our family. Two fo the highlights for us included our favorite band, The Revivalists. We've had tickets for four of us (minus Ruby) to see their concert on Saturday night forever. This last week, however, Maddux thought maybe it would be too late and she'd rather stay home with Ruby and an older friend. We obliged, but not without trying (unsuccessfully) to sway her up until the hour before.

Eli, Lehr and I had a GREAT time at the show, obviously. The front row tickets helped a lot; long gone are the days where we used to arrive 30-60 minutes before their show and hold the front row without much pushback. Their set was a great compilation of all of their albums, giving us many 'old school' gems. We got high fives from Rob (sax player) once he saw us, and near the end, David (lead singer) put the microphone in Eli's face and asked him his name and age, then told the audience to 'give it up for Eli!' Then, "give it up for his PARENTS!" (We won't let Eli live that down any time soon.)

As amazing as the show was, Sunday was even better. Ruby's time in the hospital connected us with Josh and Songs for Kids years ago. We love the organization and have been as involved as we can in their fundraising and supporting their vision for future endeavors. About a year ago they opened up a recording/playing studio to allow for serving the kids who are still very much living with medical 'stuff' but aren't staying at the hospital so much. So they can come to the studio and get music lessons, or play with the musician volunteers, or attend mini concerts put on by musical acts that come through town. We attended the grand opening, but have been unable to check out any concerts. Knowing that The Revivalists worked with Josh in New Orleans in the past though, we knew they'd try to be at the studio, and we wouldn't miss it for the world.

I can't adequately express how cool the experience was. We've seen our boys up close and personal over the years, so as amazing as that is, that was not what put this over the top. The kids and families in attendance were all in, jumping and dancing and singing the whole time. And these kids were not shy about talking to the band or playing instruments with them - that had to be refreshing for the guys! The afternoon started with some of the SFK kids performing one of The Revivalist's songs that they'd been rehearsing. Then the boys did three songs, pulling kids in on the last one. As soon as they were done, Josh had any/all SFK kids find a band member and work with them on whatever instrument they had. It was chaos, amazing, musical, joyful chaos. Ruby made her rounds from Zack, to Ed, finally to Andrew. I tried to grab a few videos and phone photos, but honestly I just held my spot at the back of the crowd trying to take it all in.

The best (for us) was yet to come. Most of the families had left and the drums were open, so we encouraged Eli to sit down at the set (we'd told the big ones to 'back off' the whole time till now because this experience was for the SFK kids, not them). As soon as Eli did, Andrew's ears perked up and he joined in for a few measures. My favorite part was when he said to Eli, "Oh, you can really play!"

Pure heart explosion to see our favorite band of all time mashed up with an organization so near and dear to our hearts - Best. Weekend. Ever.

shine like a star

this is why we research. this is why we prepare for IEP meetings for weeks. this is why we document all work and analyze all assessments. this is why we overthink every scenario trying to figure out 'the best setting'.

we want inclusion, but what if it isn't the best for our child? what if it doesn't work the way we hear about it working with others? here's the truth that i know so far, at this very very VERY early stage in Ruby's life: the work, the bad days, the struggles, the fight...they aren't the whole story. sometimes there is a shining light in the black hole that feels like our efforts to remind you that some good is coming out of it all.

today we saw that shining light: ruby had her first elementary school performance, lasting almost an hour, and she. rocked. it. as in she sang the songs, stayed in her place(s), did the motions, stood still appropriately, all with no teacher or para helping her through, no assistance needed. couldn't have been more proud... lehr got a bunch of video that i condensed down to about 6 minutes. i will watch and rewatch this on the hard days.

(this video is looong, but it's as condensed as i could bear. my personal 'ruby highlights' are at 0:23, 2:37, 3:35, 5:08, 5:28, 6:05)

Wrestling Championship

Eli's introductory season of wrestling culminated in a Metro 10 Championship yesterday. He ended up wrestling four (or five?) times, and it was pretty much the perfect end for Eli.

All season long, he's been learning new moves, but had only had one win (meaning he scored more points than his opponent and didn't get pinned before the time ran out). But on Saturday, Eli's extra practices over the holiday break proved to be that extra push he needed. His first match was a bye, so it was mid-morning before he finally got on the mat. The opponent was a good wrestler, and held his points higher than Eli throughout, but Eli stayed mentally in the game and didn't get pinned until the final 10 seconds. (There are three rounds, totaling four minutes: 2 min, 1 min, 1 min. It is exhausting.)

This is when I knew something was different. Those rounds were tough; Eli was in a choke hold a lot and he had his shoulder in a less-than-great position a lot. A LOT. (Immediately afterward he told me he seriously worried it was out of socket.) This scenario is one that typically results in Eli anger (out of frustration and pain, no doubt) and some playing the victim. Eli didn't do that. During the match he visibly listened to his coaches instructions. Afterward, he pulled himself together pretty quickly and immediately went to cheer on his teammates. That's another thing that was new. Eli is definitely one to clap for or feel happy for his friends, but he was actively seeking their matches out and loudly cheering them individually in a way I've not seen him do before. Already, my day was made.

Then Eli had a match to determine if he would advance to the top four. My phone was dead, so I have NO video to show, but Eli pinned his man. He PINNED him! He was so excited. I was so excited....it was amazing! From there, he wrestled for 3rd place and won....it was a long match that went down to points (so the full four minutes), but Eli had the points, so he won! Here's where it got even more interesting - since he'd not yet wrestled the guy who was in 2nd place, Eli could challenge him to take his position. This was a kid Eli had wrestled once or twice through the season already, and the two of them chatted it up off the mat, so I already had the warm and fuzzies. (Eli is a little too adversarial for my taste sometimes.) They had a great match, and Eli came out on top, having pinned him. And when I asked him to offer the kid an additional handshake and word of encouragement after all was said and done, he didn't fight me at all.

Seriously. The humility. The joy of competing. The team-player attitude. The determination. There was such a shift in him, in such a positive way, yesterday, and it was so awesome to see. I can't even complain about being at the gym for twelve hours (630-630) because it gave me the best front-row seat ever. And for him to be rewarded with the wins and the pins...icing on the cake. Eli and another team mate both ended up with some hardware for finishing 2nd in their weight classes, and the team had a tremendous showing, especially for this being the school's first full season of wrestling.

Christmas

It was the first year that it's been just us at our house in probably forever. It was quieter but still a lot of fun. We spent Christmas Eve making food and playing outside. Just before we left for church, we took a walk to drop off some of our baked goods at a friends house. The girls rode on the electric skateboard, which sounded like a great idea at the time. However, on the ride home, the board got going too fast for Maddux to control it, and they toppled. Ruby was such a trooper - no tears, just a pouty lip. Her face, however, tells a different story.

At church, Ruby fell asleep on Lehr's shoulder, which was probably his favorite part about the whole day. We stopped for sushi on the way home (our new Christmas Eve dinner), and then we went home to change for holiday light-seeing. The kids put on their matching PJ's and we made some hot cocoa and set out with my pre-made map/list. There were a few really cool houses, but the winner was the one that included a neighborhood full of ball-type light creations that were strung high in the trees. It was taken to the next level when one of the houses started lighting up sky lanterns just as we drove by. We pulled over and watched them light about a dozen before letting them loose in the sky. So pretty and fun to watch. The night finished with the kids opening their gifts to each other - their tradition.

Christmas Day started with our scavenger hunt to find Baby Jesus to put in the manger. (Of course, that included some arguing also, as it always does.) We opened some gifts, ate some breakfast and enjoyed just being. Just after noon, we gave the kids their 'big' gifts. We usually don't do a big Christmas, but each kid wanted something larger than usual this year, and we went for it. Maddux opened an iPod Touch (which she's begged for since forever), and Eli received a new guitar. They were psyched, to say the least.

After the gifts, we started our (new) annual Christm-olympics. It was a lot of fun, Ruby had a blast, and the big kids actually got along!

It was warm and sunny outside, so we got to do at least half of the events in the backyard. Maddux and Eli legitimately tied for first place, and in an unexpected twist, Eli said he did NOT want to do an extra game to determine the winner - he thought it was best that they tied.

We followed that up with homemade spaghetti and meatballs and an ice cream birthday cake for Jesus.

Go West, Young Man

This was a big summer for the big kids. We sent Eli and Maddux out west to see my parents and brother's family just before school resumed.

On an airplane. By themselves.

They did great, traveling together, and enjoying the spoils of having the head flight attendant watching out for them on their flights. And once they arrived, they lived it up for a full week with Grandma Cathie and Grandpa Jim. They spent almost all of their time with Uncle Jay and Aunt Ingrid and all of their cousins. They golfed, boated, paddle boarded, swam, kayaked, watched movies, went to an amusement/water park...the list was long.

Eli brought his go pro camera along and documented the whole trip, putting together this great video when he returned.

School Band

Tonight was Eli's end-of-year band concert. This year has found him practicing less at home (unfortunately), yet very much expanding his range on the trumpet. So much so that he asked permission to do a solo at Christmas, and when we hear worship songs sometimes he'll lean over and say to me, "If we ever play that at church, I could offer to play the trumpet part."

Tonight's selection was a good one, culminating in a Queen medley. (It made Lehr and I proud that Eli knew all of the Queen songs way before he started playing them in class.)

Jazz Fest

We left for New Orleans around 4PM, immediately after Eli got off of a bus returning from a school mission-prep trip. That landed us at our AirBNB just after midnight. While the kids did get some sleep in the car, that made for a late night for us all. But our clockwork girl woke us up at 7, ready to go.

Since it was May 4th, the little cafe we walked to for breakfast was serving Star Wars themed doughnuts. Well, not so much doughnuts as huge pastries that were filled with all kinds of things. (To eat one by yourself would be a mistake.) From there we loaded up the car and headed to Fest for Day 1. Our friends, the Overlys and the Hambricks, were joining us from Atlanta as well, but sans kids. We agreed to set up base camp at one of the bigger stages each day so that we all had a place to come back together for the closing set. On this day, we set up at the largest stage so we could catch Jason Isbell and Beck. The kids really really liked Beck. They were familiar with his latest album, but the older stuff stirred up an interest in Eli.

We haven't stayed until the very end in a while, mainly in the name of getting the kids some dinner and rest before the next day, but Beck's set went until 7, so until 7 we stayed. Then we leisurely made our way to our car (about a mile away), stopping through the neighborhoods to listen to and dance with street performers. This is easily one of our favorite parts of Jazz Fest. By the time we made it back to the Pilot, it was dark and there were only two cars in the entire lot.

Day two started similarly, but with beignets instead of doughnuts. Today's 'big' show was The Revivalists, so we set up at a different stage, prepared to rock out from a safe distance. (Holding the rail all day for a front row spot is a little harder with kids, and it makes it hard to enjoy the rest of Fest!) Maddux and Eli consumed so many favorites, from crayfish beignets (Maddux's go-to) to red beans and rice (my and Eli's favorite), from mango freeze to snowcones...the food flowed freely. This year was the first time we let the kids occasionally go (together) alone to buy food while we stayed at our base camp. I'm still not sure how I feel about that (them growing up and the safety factor).

We had a few moments of rain, so the five of us took that opportunity to visit the Economy Hall tent where there is a dance floor. While Lehr and the girls were dancing, a fest regular approached them and asked to dance with Ruby. She declined, but Maddux accepted and an impromptu lesson followed. She had a great time being twirled around the dance floor by someone who knew what they were doing!

All nine of us made our way back to base camp for the act just before The Revivalists to make sure we were in place. It's a good thing too because that stage's lawn is smaller and it was MOBBED. So much that even the 'moving' areas of walkways inched along slower than Snowmaggedon traffic in Atlanta. Once the music started for the Rev set, we all settled in. But maybe two songs in, we got very distracted by some swarming in the sky just to our left. It was maybe 30 yards away and appeared to maybe be termites (they are big and active right now in NOLA). But then some started flying over our heads, leaving the swarm, and we realized they were too big to be termites. Sure enough, they were bees. No one appeared to get stung, but somehow their home was disrupted (we never saw a hive) and they were all abuzz. By the end of the Rev set, medical staff was around the area (just in case), and the bees seemed to have dissipated. But when I walked over to look at the area they were, I saw that the bees were still there, but congregated on the underside of a chair. Apparently the queen decided that was their new home, so they all followed her. It was the craziest thing we'd ever seen!

Bee drama over, we started the final set of Cage the Elephant (my favorite of the weekend, probably!). Maddux hula hooped the entire day, I think, using the break apart hoop we bought for her birthday many many years ago. At the time we had no idea we were raising a fest-kid! Day two found us closing the fairgrounds down again, and dancing in the streets again. Every time we would stand and watch street brass bands, Ruby would get in front and dance and make her general 'horn' imitation. And every time, one of the band members would walk over to her to let her see/touch their horn. And every time, she would try to grab it and run. After a few bands, we stopped by a friend's house for a quick birthday celebration before heading back to our car. Only in New Orleans do you swing through for a piece of birthday cake for a child at 8PM, and get served dinner in the process, just because.

Day three was back at the big stage for Jack White and Trombone Shorty later in the afternoon. We set up camp and then ran to the opposite side of the fairgrounds to catch Flow Tribe opening. Ruby loved that, especially when they played her song. She was sitting in the BOB, but when she heard the opening notes, her eyes got big, she got out of the stroller, and she bolted to the front lines. (It was so early in the day that it was easy enough for Lehr to catch up with her, thankfully!)

At one point I took the girls to the kids' tent, mainly to get a break from the sun. There was a Chinese dragon dance troupe on stage. Ruby loved them, standing up front and mimicking their jumping (she called them 'puppies'). But at one point they came off of the stage and into the crowd, and when they approached her, she freaked out. Apparently large colorful dragons/lions are frightening?

Eli pushed his way to the rail for Jack White, and I think he videoed the whole show. He loved being so close to one of his favorite musicians...he had a great view of all of his guitars and how he played each one. Trombone Shorty followed and closed down Jazz Fest for the year. We spent a lot of time hula hooping (Eli and Maddux are AMAZING, but the rest of us are not) and blowing bubbles. Once again, we are raising fest-kids, obviously! Our Atlanta friends packed up their car and drove home, and we slow played it back to our car. Once again, New Orleans treated us right.

On A Roll

Ruby is on some crazy streak(s) these days! Her speech is improving all of the time, allowing her to string together broken sentences spontaneously. (When playing by herself, I heard her say, "You hurt? Doctor. No, happy now. OK, bye-bye.", and when she's playing with me she will say combinations of, "Come, sit here, Mommy. No books, puzzles, please.") And her maturity in some situations is blowing me away. She is walking into the grocery store with me more often now (as opposed to riding in the cart so I can contain her), and she is doing many things independently.

Yesterday was the Kindergarten Sneak Peak, and Ruby rocked it. We talked it up a lot at home, reminding her that while it was her same school, this was for 'big kids'. When she and I arrived, she held my hand as I'd asked her to, and waited in line for our table assignment. Once we arrived at our table, Ruby immediately sat down, in control of herself, and started to color with the supplies laid out for her. The teacher in charge of that table told me that I was to go with the adults, leaving Ruby there to wait for the rest of her table before walking to the Kindergarten classroom. I was hesitant, but Ruby stayed seated, coloring and listening for instructions. She was very controlled and obedient!

Ruby is also starting to progress with her fine motor skills, which is huge because that is so vital for handwriting. She holds her crayon or pencil correctly almost every time without assistance now, and she is getting better on trying to stay in the lines with her scribbles. When she was born, we focused on physical therapy immediately, to get Ruby to a place where she could sit, and crawl, and walk, because she had to be able to physically keep up with peers. And then we moved to speech because talking is important for early socializing. Occupational therapy for fine motor skills, while important, always took a back seat to the other two. So while we've always worked to strengthen her fingers through signing, play-doh, etc, the percentage of time spent on OT is way less.

In the last month or so, I've really hit this harder at home: we practice on the upright chalkboard a lot (that makes it a little easier), and we trace highlighted letters and numbers often. Ruby is really good at tracing her name (or anything) if it's highlighted on her paper first. Last week I broke down my verbal cues for her writing a capital "R" in a different way and all of the sudden she was making "R" on the chalk board. Then her teacher sent this home yesterday.

So exciting that she wrote this all on her own!

Christmas

So many times holidays can carry with them stress. Sure there are fun decorations and yummy foods and traditions to look forward to, but also there can be unmet expectations and meltdowns and just stress. For several years now I have tried very hard to prevent some of those stressors meltdowns by planning things in advance to head them off, or having talks as a family in the weeks leading up to the holidays. Honestly, this year I did not have much faith that it would be any different than years past. Thanksgiving had train-wreck components, my family would be visiting for over two weeks, some of that time would include Lehr's mom as well, and some of the pre-teen emotions present in Maddux right now have been piling on top of Eli's ever-present desire to control and know everything about the current situation.

It was a Christmas miracle though! We played board games every night, we sat by the fire and talked, we made food together and no one complained (too much)... we even managed to avoid an all-out scene/meltdown by anyone! And even despite us having cold cold weather (mostly rainy) confining us to the house most days, I honestly feel like it was one of our best Christmas seasons ever!

Eli got a little stir crazy one day and asked if he could take Ruby on a bike ride around the neighborhood. We hooked up the kid carrier to the back of his bike and set him loose. But in the process, he made a sign for the back of the carrier:

We had the opportunity to hang out with friends, spend time by the fire, make an awful big mess in the kitchen at least three times each day, and spend more time by the fire. The day after Christmas, we ventured out so the big kids could go ice skating; we went from being cold outside to being cold inside.

We did a scavenger hunt for Baby Jesus on Christmas morning. As much as my kids talked it up last year (because I didn't do it based on their handling of it the year before), they weren't too into it. But that was ok because the highlight of the whole week was the first annual CHRISTM-OLYMPICS! For about two months before everyone was to arrive, I started planning games for us all to participate in. They were basically minute-to-win-it type party games, and I'd changed them all to fit into a holiday theme. We ended up doing them after church on Christmas Eve and had to stop only halfway through because it got so late! Everyone got to participate, even Ruby!
(video shot and edited by Eli)

Two Person Solo

Eli's love for all things music has continued throughout this year. It's easy for me to forget that he plays the trumpet because he spends so much time playing drums for the church and learning new things on his guitar in his spare time that we rarely hear the horn at home. But he plays the trumpet at least as much because he has band class every day at school. (This kid blows my mind!)

The other night we attended Eli's holiday band concert. He'd been telling me for a little while that he had a solo. While I thought that was really cool, I assumed he had a line in a song the whole band played that he was chosen to lead, or maybe even play alone. But at one point Eli told me his 'solo' was he and a classmate. Honestly, I wasn't sure what to expect.

After the seventh grade played their first song, their band director called Eli and another student up front. While they were walking through the music stands, the director told the audience that weeks prior, the two boys approached him and asked if they could learn and perform "Deck the Halls" for the concert. The director told them if they wanted to find, learn and practice the song on their own, he would give them a shot to 'preview' it to him the day before the concert to see if he might include it. They did and he did!

Eli and his friend each played different parts for a verse of Deck the Halls, taking turns playing and then playing together and they sounded great!

Update

Ruby's speech has come oh-so far in the last six months. Even the last three months. That girl is talking SO much and saying up to 4 words in a 'sentence', spontaneously (as in, not repeating after me) very consistently at home. As with any language explosion, her articulation has suffered because she is in such a rush to say all of the new things she can say that her mouth can't quite catch up. Especially because she has to work so hard to correctly make those sounds anyway.

One of the areas Ruby has always excelled with speech has been her receptive language. Basically that means what she's able to understand as it is spoken to her. Now that she's giving us so much more in the expressive speech world (what she actually says), we can see all that she's been learning and holding on to.

Prime example: she knows her name and how to spell it and loves to tell you. This is something she's been doing for a little while, but this video from the other night just brings it home. Check out this chatterbox! (Gobble, Gobble)

So many times we see our kids work really hard on something they are struggling with. With my typical kids, I have definitely seen them struggle and sometimes not succeed, whether it's with a sport or an academic milestone. But most of the time, they got to their goal or the goal was not one that was required for every day life (like a new sport). With Ruby and her peers, we see our kids work hard - SO hard - day in and day out. On everything. Not many things arise in their day that they don't have to work on, from social skills to physically maneuvering their world to speaking. And what I didn't realize before I had Ruby was that many times this hard work goes 'unrewarded'. That is, they don't always see the fruits of their labor. So many times Ruby will work on a skill for months on end before mastering it. Or, we will work on it for a solid year and still not have mastered it. This video has been a good reminder to me to reward the hard work even when the result is not video-worthy.

She is a Gem

Totally amazed by the oh-so strong sight word game Ruby is bringing these days.

Last week Ruby and I started working on sight words again. We did it pretty solidly through the spring and summer and we had about a dozen words that she was fairly consistent on knowing. As often happens with us, we got sidetracked with other therapy tools and practices and we haven't picked up the cards since August. Rather than go back to the original set, I pulled out some new cards/words (actually old - we used them for speech while we were in the hospital). After only two times of working on them, Ruby had a really good success rate (check out the video).

So fast-forward to yesterday when I was making Ruby's lunch. She was being a little impatient so I told her to get her chair and sit at the table to wait. She obeyed (which surprised me, by the way, since she doesn't tend to do that these days) and then fished around in the basket I keep on the table with therapy stuff. She pulled out the old cards (from spring/summer) and proceeded to correctly tell me half of them.

WHAAAAT?

We haven't touched those cards in over two months. One of the biggest struggles I have in working with Ruby on these things is how hard it seems for things to 'stick' with her unless we drill it daily. Literally daily. She very much proved me wrong...

Deck Concert Series

After ten years of holding our breath every time someone leans on our deck railing, or even steps foot on it, we replaced the whole thing. The project finished last week and we could not be happier. In addition to the awesome stadium stairs, it's flat, open surface lends itself to shows, concerts, performance. This works well since we are a house filled with drama and noise.

Eli has been working on guitar skills for several months now, and this week he will perform in his school's Talent/Variety Show. In preparation for that, he gave us our first Concert on the Deck tonight. 

Ruby loves everything Eli and Maddux do, and that is true for music too. Last night she kept walking over to his pedal board and trying to step on the pedals like she sees him do. We reminded her over and over to look with her 'eyes, not hands'. At one point she walked to the pedal board again, looked at me and said, "No touch. Eyes. No hands?" When I nodded in agreement, she then pivoted at the waist and got her eyes right up next to the board to 'look with her eyes, not her hands.' (You can see some of this at the very beginning of the video.)

Eli gave us a few listens to his Jimi Hendrix version of The Star-Spangled Banner before he exited the stage. The evening ended with Eli giving a free lesson to one of his shorter groupies.

Therapy Update

I have been bad, bad, bad about blogging since the beginning of school. What can I say...busy times!

Speech
This girl.

She is such a chatter box! Ruby's speech continues to grow, with her spontaneous speech improving daily. We are in a season where I get comments from friends like "I can't believe how much she's talking!" or "She's talking so much." And these are people who see her a few times a month at least! I recently started going back through a large stack of sight word flash cards with Ruby. While in the hospital, we would go through them daily. My focus then was not for her to read them as much as mimic me saying them. At best, there were 10-12 that she could say (repeating after me) with enough intelligibility for someone else to know what she was saying. When we picked those cards up last week, I realized that she repeats every one after me, and only a few are hard to recognize. (This stack is at least 50-cards deep.)

This made me realize how far we've come in the last two years. Not only is she speaking more, but she is doing so spontaneously (without being directly by me, or without repeating after me) and she is able to repeat anything I give her. When you are in the early stages of speech therapy, you are often measuring success by how many words your child has. For a long time that was a single digit number: the total words Ruby could say, repeated or spontaneous. If I think about it now, Ruby's word measure is infinite. If I pull out 100 cards and say the word first, she will repeat 100 of those words back to me.

This. Is. Amazing. And oh-so encouraging.

PT/Aquatic Therapy

Still Ruby's favorite hour of the week! We missed Aquatic Therapy for a month recently due to school breaks and scheduling issues, but when we returned, Ruby's therapist was excited and surprised to see how much stronger she had gotten in that month (instead of losing skills/muscle). This speaks loudly to the benefits of being in a school environment that allows for free-time on the playground for recess. My girl runs (and runs and runs) and climbs the whole time she is outside, and it is really paying off!  

Ruby can now jump with two feet, getting actual air under her feet. And she likes to jump all of the time. She has jumped in succession (two or more times in a row), but that skill is still emerging. She has jumped over obstacles (pool noodle height or smaller), but that still is still emerging too.

OT
Just this week I am starting to see some improvements in this area. Hallelujah!! Ruby just started to show interest/ability in coloring inside of the lines and is working on that skill. FINALLY this week she started tracing some lines/shapes/letters for me with success. She has been able to trace a line going straight down for a while, and I know she gives them a little more accuracy at school, but at home we have been struggling with this one. (One afternoon she even traced an "R" with crazy accuracy!) And yesterday when we were coloring in the afternoon, she kept readjusting her crayon to hold it correctly (unprompted). This is crazy cool.

And her scissor skills are improving too. Straight lines through the entire paper? Yes, please!

Winter Swim

Eli decided to join the swim team at his middle school this year. For a few weeks he had cross country runs 2 or 3 days a week and swim 2 days a week (he couldn't sleep enough!) The season ramped up his stamina immediately; the first practice found him swimming at least 1700m, which is well over the amount he would complete in any given summer swim practice. But he was happy to report this week that he could already tell that he was improving because it wasn't as hard as that first week.

Today he had his first swim meet, a home practice meet. It came on the heels of an all-night lock-in at the school, so his times may not have been his best, but he completed all four events and only had one goggle mishap: success! (It's hard to see, but he's in the middle-ish lane. He finished middle of the pack.)

Beach Trip

Another great fall break on the books! We returned to 30A for our fall break, housing with another family - one we adore - which meant 10 people under one roof...fun fun fun!

For five full days we played in the waves and the sand, barely touching the pools this year! The kids seriously loved the ocean and all spent all of their time in there. Boogie boards, skin boards, surfboard/beaterboard, yolo board, nets for 'fishing', sandcastle making, and seashell seeking occupied every day.

Ruby could not get enough of the ocean. She LOVED to use the boogie board and she loved to 'swim'. She would jump at the water and try to glide, sometimes going under (which seemed to make her even happier!). Ruby rode in the bike trailer and on the front of Lehr's bike, which also made her happy as a clam. (We did have two bathroom accidents, reminding us that potty training is STILL going strong even when we think that after 1+ years we might be done.)

Maddux made friends with kids on the beach and worked in the sand and water most of the time. But she did plenty of boarding and swimming as well. She saw a dolphin and several huge rays during our stay. Her favorite activity seemed to be collecting live sand dollars...they were everywhere, which is crazy because before this trip, we'd never seen one before!

Eli was all about the boards, and all about swimming. He had a great time, especially with Drew and Davis and Bryce. We were on the beach by about 9 every morning and stayed until about 3 each day before going home to shower and get dinner. Each night we ate dinner at or on the beach, enjoying any extra sand we could.

We saw lots of other friends at the beach, at dinner, on bikes...pretty much everywhere! This was hands-down one of the best trips we've had, from the friends who shared it with us to the 'ease' of getting right down to the beach and just living there each day to the best weather and waves we've seen in a while. I love that this is our go-to vaca every fall!

Therapy Update

Speech

Ruby is rocking and rolling. I keep saying it, but she adds so many new words and blends all of the time. This means articulation suffers as she tries to keep up with her expanding vocabulary, but that's why we do so many hours of speech each week (to correct). She still does speech 2x/week at school as part of her day, and then she does speech once or twice a week with private therapists that focus on different parts of her articulation and blending. Ruby is stringing together thoughts to make toddler-esque sentences now; it is so cool!

PT/Aquatic Therapy

This is Ruby's favorite type of therapy. She LOVES the pool, she LOVES Miss Beth, and that means she LOVES Aquatic Therapy! Ruby is jumping all of the place now, which was our main goal when we started. She can jump from standing still, she can jump forward, she can jump off a curb, she can jump twice in a row (sometimes). For an hour each week Ruby and Miss Beth motor around the pool, sometimes with ankle weights, kicking (on her stomach, on her back, seated, on a kick board), maneuvering pool stairs, jumping up and down in different depths and on dry land, doing sit ups, balancing on one leg, balancing in the water on a noodle or Miss Beth's knee....it's an exhausting hour!

OT

This is Ruby's biggest struggle right now. We still haven't acquired private Occupational Therapy. She receives it 2x/week at school, and when she stays for the full day at school, the afternoon focuses on handwriting, which hits this area. That being said, when I work with her at home, my assessment is that her skills are still very lacking. Her control of crayons, pencils, etc. is not great at all, and even tracing straight lines is difficult, so the only letters she can at all form on her own are "O" and "X". And those are not on a specific writing line, but wherever on the paper she lands. We are tackling that harder than ever at home right now. We do a lot of thera-putty, cutting, using utensils to pick up objects...that girl works hard!