Dance The Night Away

Another year of middle school, another middle school dance!

 

Eli was just as willing to attend this year's dance as he was last year. With the theme of 'Hawaiian luau', he wanted to get some new threads. (As much as we love the uniform part of private school, it means his non-uniform wardrobe is pretty lacking.) The night of the dance, Eli and Drew spent time playing whiffle ball in the backyard (after they were dressed and ready to go). It's not likely the girls took the chance of messing up their look so close to the event, but there is the great divide between middle school boys and girls, right?

The 7th grade boys all gathered at one family's house a few hours before the dance with the intention of eating there (catered tacos) and walking over together. This was SUCH a great idea (and so generous) by the host family, as it allowed several boys who likely wouldn't have come to the dance to feel 'safe' to walk in without the fear of not finding a friend.

The boys ate and hung out and generally behaved themselves very well prior to the dance. I came to take photos before they left and was pleasantly surprised to see the maturity level. Once at the dance, some of the girl-boy dynamics started to play out. We all remember this age: the girls are noticing boys big time and doing whatever they can to get the boys to participate in the social ritual of flirting and dating. Some of the boys were pulled into this and had 'dates' that they were shoved onto the dance floor with once or twice throughout the night. (Thankfully, Eli hasn't had the opportunity or desire to enter this yet. He is listening to our lectures though, as he said to me the week before, "Mom, I don't get why people our age think this is a dance where you take a date. I mean, NO ONE is driving anyone there or paying for their meal or anything...they are too young to date!")

Eli had a great time hanging out with his friends, and I couldn't resist taking this photo of him amidst all of his peers. It's very telling of his (non-phone-or-device-having) existence these days. Therapy bills will start to pile up any time now.

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!

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.

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.

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.

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.