Thursday, May 10, 2018

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.)

Tuesday, May 08, 2018

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.

Thursday, April 26, 2018

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!

Saturday, April 21, 2018

Middle School Dance

Eli had a blast at last year's dance, so it was of no surprise to me when he opted to attend again. He and Drew would, of course, arrive together. We didn't have to leave for the dance until 5:15, so there was plenty of time after school to shower and get dressed. For a middle school boy, this takes all of 10 minutes. With the remaining time, Eli and Drew played golf in the yard (and they may have fished a ball or two out of the creek.)
This year his class of boys met up at a nearby house for dinner before walking to the dance together. I got to show up in the middle of that to take pictures of the group of 24 before going to the dance for more photos of the event. I was impressed with how well behaved the boys were, especially considering that they are all 12-13 and there was a pool within arm's reach at all times.
The dance was a lot of fun, but there was more boy-girl 'drama' than last year. While Eli was aware of it, he wasn't a part of it, so he really tried to distance himself from it. As any prying mom would, I asked several different ways for more details the days leading up to and following the dance. As best I can tell, he really doesn't get the whole attraction to 'the chase', and is happy to find another person or group to hang out with when things start to get awkward and angst.
Eli is definitely the class clown...I'm not sure how much of it is him being the funny guy because he wants to be, or if it's a little bit of a defense mechanism for being picked on. I didn't witness any unfriendly interactions, but Eli's friends are all quickly growing taller and their voices are getting deeper. Unfortunately for him, he is not following their lead as of yet.

Tuesday, April 10, 2018

Ruby Updates

We are still on an upswing of skills, especially in the speech area!

Speech
We just keep enjoying the flow of words coming out of Ruby. She adds new words weekly, and constantly becomes more and more intelligible to people outside of our house. Her latest words/phrases are:
  • Whaaat?!? - This one is hilarious because, while it is not a new word for her, she will respond with this when someone says something she didn't expect. (As in, she uses it very appropriately! Last week I told her, "Ruby, we are going to pick up Maddux and Davis, and he's going to hang out at our house until soccer practice." She responded with "WHAAAT?" And the best, 'what' face ever!) I need to capture it on video, but she pulls it out at the best, most unexpected times and cracks us all up in the process.
  • Counting to 10 - she will do it all of the time, on her own, in the backseat, when playing with toys...rarely does she make a mistake anymore.
  • A - Apple - Ruby LOVES to find letters and then tell me what word they go with. Or tell me what letter a word starts with. A few weeks ago we were playing with legos and she put one skinny one perpendicular on top of another and said, "Look, Mommy. 'T' Ty-ler." And yesterday while we were discussing Eli's school opportunity to dress up as something relating to the first letter of his name, Maddux asked Ruby what she would dress up as. She promptly responded, "Ra-beet". Dang, she is a smart cookie!
Physical Therapy
Ruby is playing soccer on Sundays this spring to keep her gross motor skills in check. Her balance continues to improve, and she loves loves loves to run! We are also doing swim lessons once a week. Ruby loves the water and after a minimally rough start, she loves getting in the pool and working with "Miss Kelly". We will not be ready for swim team this year, but our hope is that she will join Eli and Maddux next summer.
Ruby is climbing everything she can when outside, especially on the playground. A few weeks ago I took her to a playground with a taller rock wall (straight up) to a flat surface. I stood below her, nervous how I would be able to catch her if/when she fell from so high, but she scaled that thing without so much as a hiccup. And last weekend I took her to a birthday party at a 'bouncy house' place. She worked so hard to get through the long, inflated obstacle courses. One almost took her out, requiring her to climb up a wall that was pretty high, on small little blow-up foot supports. But she never gave up and finally made it out. (And then asked to go back and repeat it a dozen more times before we left.)

Occupational Therapy
At home we practice tracing letters a lot. Ruby's grip on pencils and crayons is improving, and sometimes she can write a few of her name letters without the guidance of tracing. Her coloring is becoming a little more refined also; she still can't stay in the lines, but now she attempts to stay closer to the part of the picture she is coloring. Her cutting is improving as well; at school she consistently cuts out shapes, even turning the corners by herself sometimes.

Monday, April 09, 2018

Community

If you follow social media posts of anyone who has a tie to Down syndrome, you've likely seen #theluckyfew. This hashtag references the belief that those of us with connections to someone with Down syndrome are 'the lucky few' in this life: we get to learn firsthand that joy and beauty can be found in unexpected places. It's a perfect combination of words to describe the life we get to experience through our family members with Down syndrome. Recently for me, it's also a way to label the opportunities the lucky few of us are given in they way of connecting to others.

When my daughter, Ruby, was born almost five years ago, I immediately sought out someone - anyone - to talk to. I knew I needed to find an avenue into this diagnosis because I had no reference point for Down syndrome. I didn't know where to start; the only thing I knew was that I knew nothing. 
 
Of course I went online where I found a few blogs and binge-read them in those first few weeks. And a doctor gave us a phone number to connect with a mom in another state. Finally, I was pointed to a local mom who had her baby also, and we planned to meet up at Gigi's. I will never forget that first meeting because it was the first time I felt like I might be able to do this. That morning I met two moms who were just like me with kids just like Ruby starting out just like us. And I breathed a sigh of relief.
 
Over the next few months, I went to Gigi's every week, meeting as many moms as I could, making conversation with every person in the building, gathering information from every therapist or specialist or 'someone-who-knows' offering their knowledge. I found this whole new world filled with friends and information and support and amazing kids. I found a community. And I realized very quickly that Down syndrome forms an instant bond for all of us. The two moms I met that first morning are still my friends, and we check in with each other regularly. Now, almost five years later, I have added so many moms ahead of me, behind me, and right beside me on this journey. All of them have shared with me as I've shared with them, and when things arise like speech issues, potty training, IEPs, cancer...they give a hug and they offer advice and they have your back.

Fast forward to a few months ago when some of the moms in one of my local circles started talking about another group of moms that met up at a conference and got similar tattoos to signify their kinship to each other on this T21 journey. I was all in. The connection I've found with the many women, near and far, that share this walk is a very strong one. One so strong I can only refer to them as my tribe, because that word is defined as families or communities liked intricately, even by blood. The list of moms that have played such a significant role in my journey with Ruby is so long, and even includes some that I've only talked to once or twice. I can say without a doubt that they are all lifelong friends, and they are absolutely my tribe. (In fact, I write all of this after a morning spent connecting with at least a dozen local women in my tribe - a few new to me and some, very 'old' and dear!)

So what is the tattoo and what is the meaning behind it? For me the three arrows represent the triplication of the 21st chromosome present in Down syndrome. The arrow shape because sometimes God knows we need to be pulled back, maybe even held in place for a bit, before we can move forward. But when we are stretched, oh how high we can soar! What God has used Down syndrome to do in my life is something I can't even explain. It's something so much bigger than anything else that it even made cancer seem small. It's something that has forced me to lean on other moms in a way I never thought I would. It's something that allowed me to be there to help other women when they needed someone to tell them it was going to be OK. But why a tattoo? Because when something changes you as permanently as Down syndrome does, something permanent to represent it just makes sense.

Friday, April 06, 2018

Maddux Makes the Grade

Maddux has always had pretty good grades; both of the big kids did through elementary school, even though their conduct often dipped into the "needs improvement" category from time to time. Last year she set her eyes on a 'perfect' report card though, and asked to tie a reward to it. (And as you might expect with Maddux, that reward request has changed over time.)
This last fall, Maddux had two report cards, both close to straight A's, but not quite there. And then, without much fanfare, she totally pulled it off in the third quarter! She was SO excited, and we are super proud of her for working towards her goal  (and the report card is still hanging on our refrigerator, over a month later). When it came time to collect her reward, she requested to go shopping at the mall with mom. I don't do the mall, which means we as a family don't do the mall. But she has seen it when we've gone to Costco, and she knows that there are stores in there to buy clothes. So to the mall I will take her.

Saturday, March 31, 2018

IEP Time

While it's not an 'official' IEP, because those take place in the fall for Ruby, an end-of-year IEP amendment is a big deal for us because they shape the start of the next school year. And this year is a biggie, as Ruby will be transitioning into Kindergarten in the fall.

We waivered initially on that big step, but listened as Ruby's teachers reminded us of her comprehension of all preschool concepts. That, and we prayed, and researched, and talked with other parents (hello, T21 Tribe!) who have gone before us, both pushing ahead and holding back. In the end we agreed with her team that moving ahead would be the best for Ruby at this time, as it would allow a higher ceiling of academic content for her (even if she ends up repeating Kindergarten). And we know that it's not realistic to expect her to catch up to her peers in the areas she has weakness in (fine motor skills, speech) before moving ahead.
Our experience with Ruby's school (her zoned elementary school) and her team has been encouraging in the past year and a half. While we know that Ruby's educational road may have some bumps and roadblocks along the way, so far this school has given us a lot of green lights. The IEP meeting reflected that as we discussed the assessment of Ruby's performance in this last year. Here are just some of the great things that her team documented on her progress report:
  • Ruby does a great job counting 1-10 without help.
  • Ruby is independent in the bathroom (with an adult checking on her) and verbally communicates her needs to use the bathroom throughout the day.
  • Ruby counts the correct number of objects from 1-6 consistently.
  • Ruby is independent in the lunchroom, unpacks lunch and feeds self.
  • Ruby has really caught on to the concept of making patterns. She has done an amazing job of completing simple color patterns. 
  • Ruby is able to trace her first name with accuracy. Goal mastered!
  • Ruby is able to cut large shapes from construction paper with some assistance to turn at the corners.
  • Ruby is very social in the classroom and loves to be part of all activities.
  • Ruby has grown tremendously in her ability to participate in her SNP classroom this year.
This is a big deal to me because these are things that are typed into the system, in Ruby's team's own words. They are not passing comments made on a note home to make me feel good about her day. And her teacher and OT provided several samples of work that I had not seen yet, all giving great color to her fine motor growth: shapes drawn totally on her own and letters written without being traced. We work on those things at home, but I'd never seen her perform as well as the samples they pulled out. (Yay!)
We discussed placement for Ruby's Kindergarten year and agreed on the inclusion classroom (a typical classroom that includes a few kids that will need some extra support INSIDE of the classroom). She will be pulled out for speech and OT a few times during the week, and she will get pulled out for one Language Arts (ELA) segment each day. They initially wanted to pull her out for two ELA and one math segment, but I asked if we could try the first quarter without any pullouts (to allow her to show us what she could do). Due to the ramped up fine motor requirements during the ELA segments, they worried Ruby would become frustrated quickly, so we compromised.

All in all, it was a great meeting; we are happy with the outcome, and we know Ruby is going to rock it!

Wednesday, March 21, 2018

World Down Syndrome Day 2018

A few years back, Eli asked to talk to his 4th grade class about World Down Syndrome Day. This year, Maddux followed suit. (She claims she did this last year, but none of us remember that, and surely we would!) Just after Christmas, Maddux started talking through a power point presentation she planned to put together to show her class. She was granted permission by her teacher, and went to work. In true Maddux fashion, it was 300% heart with just about 80% work: the night before she was to present, the power point was still being worked on. But that is to say nothing of the sentiment of it all. While Maddux wanted to do this 'big' thing in her class, what she has done in every class, and in the whole school, is introduce kids to Ruby in a way that is all things good. She always brags on her sister and introduces them to her friends and teachers. The whole school already knows Ruby, and it's largely in part to her amazing big sister.
The day before World Down Syndrome Day, Maddux got up in front of her class and gave the presentation she practiced at home. She said there were a few questions, but mostly the kids just listened and agreed to participate by wearing different socks (and red, for Ruby). The morning of, I went to Maddux's class to get a picture of her and her friends. It was so cool to see all of these kids participating in something they might not have known anything about before Maddux's presentation. We reminded her how cool it was that she impacted those kids in such a big way; their interactions with people with Down syndrome - or maybe just people who are different from them - will be forever changed.

Thursday, February 22, 2018

Spring Soccer

We signed Ruby up for another season of toddler soccer this spring. Not only did she enjoy it so much last fall, but it helps her stay physically challenged, and she gets to interact with her peers in a very typical way. (Special Needs Criteria Trifecta for the win!)
Our good friend was going to coach his daughter's team, so Lehr teamed up with him to assist, making it very easy for Ruby to participate meaningfully. She loves the drills, and she follows the directions as much as can be expected for a 4-year-old on a soccer field. Her friend, Madison, is on the team too, so the extra hangout time is awesome.
Towards the end of the first practice and game, Ruby's coach from last season ran over to her and Lehr to say 'hi', and check in with them. I love that he sought her out!