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.

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!

Thursday, February 15, 2018

School Stuff

Ruby loves school. Have I mentioned that? Because it's awesome...really awesome to have a kid love school as much as she does. And I'm sure I've blogged about many of these things already, but I love that they happen, so I'll write about them again:
  • When she comes back to school after a break, sometimes only after a weekend, she hugs her friends and tells them, "I missed you!"
  • When she gets in the car to go to school each morning, she recites their names and the letter each starts with, and sometimes she sings "Happy Birthday" to one of them.
  • When she and I are waiting at the front office for one of her teachers to come get her in the morning, at least as many kids say "hi" to her as she does to them, and if they can get a hug, their day is made. (And that makes MY day!)
Last week I was taking photos of some of the classes at the school for some upcoming projects. When I got to Ruby's class, they were in the middle of a Valentine's Day activity involving an obstacle course. It was SO fun to see the kids participating and loving all of the extra movement. Ruby, of course, smiled the whole time and couldn't get enough.

Monday, February 12, 2018

Father-Daughter Dance

Maddux and Lehr attended teh school's annual Father-Daughter Dance last week. Maddux chose to wear a very fancy dress that Lehr found crazy cheap online for last year's dance again. Aaaand she wore her Air Jordan tennis shoes with it.
The two of them had a great night, dancing and eating cookies. Lehr said she spent more time with him than she usually does at the dance (it often turns into her running around with her friends). The were invited to hang out with friends at a pre-party, which also turned into a post-party.

Sunday, February 11, 2018

Mother Daughter Bible Study

Just before Thanksgiving last year, Maddux and I started attending a Mother-Daughter Bible study. A friend and I were walking around the neighborhood one morning when she told me about how God had been putting something on her heart. As she spoke about this idea to do an intentional mother-daughter group, I was blown away because it was something that had been stirring inside of me as well.

So the two of us got together for a few planning sessions with journals and Bibles, and we planned out three or four 'lessons' with ideas for many more. The other mom already had a group to invite in mind; we wanted to stick to girls/moms very close by (like, in only two neighborhoods) that were all right around 10 years old. We sent the invites, created journals for the girls, and prepared for the first meeting. Low and behold, 10 girls and their moms showed up! That first night, we had great discussion, Bible-page-flipping, and lots of girly giggles (and hot cocoa, of course).
Since then, we have met twice a month, and I am so so grateful for it. Maddux loves going, and she is an awesome participant when we are there. In fact, one of the times, she voluntarily led us in a closing prayer. I love the intentional time I get to spend with my girl, I love the way we're able to connect to other girls and moms in our immediate area, and I love how God is growing both Maddux and I in leading, participating, and planning.

Sunday, February 04, 2018

Middle School Soccer

At this time last year, we were getting ready to start Eli's first golf season. He enjoys golf, and he was very excited to have the opportunity to work more on his game, but truth be told, a spot on the golf team was a runner-up prize. After spending many afternoons on the fields of his middle school, attending every pre-tryout workout they offered, he had a week of official tryouts with no callback: he didn't make the team. And had he known that he wasn't going to make it, he may have played in the rec league, as he has since he turned 4, but the sign-ups and evaluations for that team passed prior to this. At the end of the day, Eli had a great golf season and really enjoyed all the practices and matches.

With no baseball last spring, Eli returned to rec soccer and really found a new passion. He played again this last fall, and when tryouts came up last week, he picked soccer over baseball, without hesitation. We talked through the tryouts each day, with Eli reporting how he'd performed and his perceived ranking in the pool of players. At the end of the week-long tryout, Eli was rewarded with a spot on the team. He was elated!
After only a few practices, the boys had their first game during which Eli had an assist! After the game, the coach picked three captains for the next game, Eli being one of them. What a huge honor! Since then, he's started many games, played more minutes than he hasn't, had a few shots on goal, and made some great connections with his fellow players, all while improving his overall skill. Eli is not the fastest kid, but he's learning how to use his sprinting speed and his (smaller) size to his advantage.

Saturday, February 03, 2018

More Tattoos

The Lucky Few Tattoo movement has remained strong in Atlanta. After our initial group-branding, there were many moms who were sad they missed out. And we had lots of dads that wanted in on the action. So some of my fellow moms organized a second 'tattoo party' with four artists (instead of the two that we had), and they planned for it to take place at Gigi's Playhouse. I was asked to take photos and was more than happy to oblige.
Lehr and Ruby were out of town, and Eli was at soccer tryouts all afternoon, so right after school, Maddux joined me, my back-up camera in tow. The event was slotted from 4-8PM, with local news coverage, both on Facebook live and on the 6PM news (with teasers in the 5-6PM hour). Maddux and I moved around the whole time, trying to take shots of it all, while also taking it all in.
I am often amazed at how well Maddux composes herself in new situations. We've obviously talked a little about tattoos in our house, but for some reason Maddux didn't totally get the process until this night. Thanks to the lens she was using, she was able to see the needle up close, and she saw how it went in and out of the skin. Later she told me how much that surprised her, though you would have never known by watching her.

Below are a few of the shots she got; she's a natural!