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.

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!

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.

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!

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.

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.

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.

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.

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!

More School Fun

During Ruby's IEP meeting before Christmas, we discussed placement (meeting to follow in a little over a month). Her team currently feels that Kindergarten would be the best place for her, given her current strengths and comprehension of material. While we have not totally decided, we did ask that in preparation for that, Ruby be allowed to participate in a Kindergarten class at times during the spring. One of our concerns for starting K next year is the larger class size (where Ruby gets less one-on-one guidance for success), and the transitions to different classrooms. I'm not worried about it overwhelming Ruby; my concern is it will be so much and so exciting that she will struggle with impulse control (more than she already does).

The team was amazing and agreed without hesitation during the meeting. True to their word, the made it possible for her to join one of the kindergarten classes for morning circle time last week. After sitting in on (and loving) that, they passed another class on the way and joined that class as well. Ruby apparently knows that teacher and interacts often. She did great, sitting and working on handwriting prep, but did not want to leave when it was time.

After lunch and rest time today, Ruby joined yet another Kindergarten class for their music 'special'. Ruby sat when the kids sat, stood when they stood, listened and followed directions, and even thanked the teacher when it was all done.

My heart is so happy right now!

The Lucky Few

If you follow Ruby or any of her friends on social media, you've likely seen #theluckyfew. This references the belief that those of us with family connections to someone with Down syndrome are 'the lucky few' that get to experience the blessing it can be.

When Ruby was born, I immediately sought out a community, a connection. I knew that I knew nothing and I would need to learn from those that went before me. What I found was so much more. Moms I met at Gigi's, moms I met in my area of town, moms I met online, moms I talked to on the phone, moms I stalked the blogs of... What I realized quickly was how connected we all are by our children; it forms an instant bond. And when things arise like speech issues, potty training, IEPs, cancer, they have a hug and they have advice and they have your back.

Fast forward to about a month 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 (for adoption, I believe) and ended up getting similar tattoos to signify their journey and their connection to each other.
I was all in. I can count so many moms that have played such a significant role in my journey since Ruby was born, and many of them I've only talked to once or twice, or only texted. But that's the thing about Down syndrome: that instant bond.

Tonight a group of about 40 women gathered in a tattoo parlor (photos), laughed, hugged, met or re-met, and caught up on one another's journeys. Some got the original tattoo, some got a derivation to tie into a personal significance, some watched and gave moral support, but we all gathered. And then we went to dinner where MORE joined us and we continued more of the same. And it was perfect.

So what is the tattoo and what is the meaning behind it? For me it represents three arrows, signifying the 3 copies of the 21st chromosome present in Down syndrome. The arrow is because sometimes God knows we need to be pulled back, maybe even held in place for a bit, before we can move forward. But, oh, when we are stretched, we can soar so much higher! 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 cancer seemed 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 another tattoo? Yup. Because when something changes you as permanently as Down syndrome does, something permanent to represent it just makes sense. Even this guy thought so...

More Words

"Mom, I missed you!"

Seriously, does it get better than that?

During the last days of 2017, Ruby started saying "I missed you!" to people when she'd see them after a little time away. That little time away could be a few days trip, or a whole day at work...the point is that she uses the phrase and uses it appropriately. SO love this.

A few days ago, Ruby upped the ante. We were hanging out at the house (because with temps in the single digits and ice on the roads, we were stuck in the house for more days than I would prefer), and from across the room I said to Ruby, "I love you!" She grinned and walked over to me, hugged my leg (which I LOVE) and said, "I love you too, Mommy."

And now it is a routine phrase for her.

Melt. Melt. Melt.

I cannot adequately convey how amazing it is to hear your child put a voice on their thoughts and feelings when it's not something that comes easy. There were days, there are still days, when I would wonder if we would hear certain things from Ruby. Every new word or phrase she gives us is like the best gift in the world, especially because it is not a guaranteed gift.
This is a tricky one for me. I've been on the side (and I know I will many many more times) of seeing Ruby's peers with Down syndrome do things ahead of or 'better' than her. Especially in the area of talking. And when you're in that place of putting in so much work and seeing your child's efforts go without the reward of whatever it is you are working towards, it can be torture to see or hear about someone else's success. But at the same time, I know how important it is for us all to celebrate the milestones AND the hard work. So today I'm celebrating.

Talking Talking Talking

This girl just keeps going with her conversational speech! Over the holiday break she picked up a few new phrases:

• "Oh WOW!"
• "Oh my gosh!"
• "Santa Clause. My HOME!"
• "I missed you!" (my favorite)
• "Oh, dangit"
• "Oh, Yes, PLEASE!"
• "Tag in back" (when referencing how to put on pants)
• "I can do it!"

I couldn't love all of these new phrases more, especially because they were not intentionally taught; she just picked them up in her daily conversations with other people.

When returning to school this week, she hugged each of her classmates and told them, by name, "I missed you!". She also told her teachers that she was 'so happy' to be back at school.

Today is one year from the first day she walked into that classroom. I can't believe how far she's come in a year, and I couldn't be happier about all of the continued new
speech!

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!

Ruby Soccer

Ruby LOVES soccer. After two seasons of parent-kids Sunday 'practices', Lehr signed Ruby up for a 4-year old team this fall. She had a blast, playing with a handful of other kids in a practice for half of the time, then a scrimmage with another team for half of the time. Lehr helped the coach, basically shadowing Ruby, but he said most of the time she stayed very engaged all on her own.

IEP

As we eluded to a month or so ago, Ruby was due for her annual IEP this month. This afternoon we sat down with Ruby's 'team' at school to discuss the goals currently on her IEP, modify or set new ones, and start the discussion about placement for next year. With Ruby having a summer birthday, she will either be older or younger than her peers, depending on when we start her in Kindergarten. This was a tough decision for us when we faced it with Eli...it is proving to be equally as tough with Ruby.

First, let's talk about the goals. Ruby mastered all of the social, behavioral, speech and OT goals set for her at the end of last year (we did an IEP amend before school let out). We put some new ones in place, mainly to get her through the end of this school year, though it has been obvious to me that her teachers are not holding anything back from Ruby. When she has shown mastery of a goal at school, they have moved on to the next thing for her without hesitation.

When the team talks about Ruby, they can't keep the smiles off of their faces; it's obvious how much they love working with her. And while they think she is ready to move on from their classroom, they will definitely miss her. (And she will miss them!) The talk about next year covered everything from Ruby's growth in the short time she's been in the Special Needs Pre-K to her ability to follow the classroom routines and transitions well. She is very social, and they don't see any issues with her in regards to typical peers. I asked many questions about what Kindergarten would look like for her (number of pull-outs, percent of time with typical peers, etc.); while answering these questions basically requires a crystal ball, Ruby's team still gave me solid responses.

And then, when I launched into my requests for things that would help better prepare her for a fall Kindergarten start, the meeting got even better. I asked for a few resources for things that Ruby would be expected to learn while in Kindergarten, and they gave them willingly. I asked for opportunities for Ruby to visit with a Kindergarten class before the end of the year to help get her acquainted with a bigger class size. Not only did they say they would make that happen, but they said they would try to have it start right after Christmas. (Hopefully circle time and some specials.) And here I was thinking that would be a difficult sell for a visit a few times before the end of the school year.

This is the part where I cheer and dance and rejoice because I know this IEP will likely go down as the best one we will ever have. This just isn't how it normally works.

At the end of the day, we are having to weigh our options. We have three: Kindergarten, repeat Special Needs Pre-K, or private Pre-K/Young 5's. I've visited a few private programs in the last few weeks, to see if those options really are options. One I found is great, amazing even, but comes with a steep price tag and a far commute. The other is affordable but carries no extras, and a lot of uncertainties. Now that we've seen how much Ruby can thrive in the right environment, I'm so scared of the missed opportunities we could face putting her in the 'not-right' place. Especially for a whole year. Especially when the whole reason of putting her there instead of Kindergarten is to see more growth.

As much as we love her SNPK, repeating means just that: repeating the same curriculum. And Ruby has mastered it - seriously mastered it. That doesn't mean she's up to speed with every other four-year-old out there, but the colors, letters, numbers, months, seasons, etc. that they teach in her class is all information Ruby has demonstrated comprehension of. So that means she could be very bored next year. Also, she would be 5 and her classmates would be 3 and 4. We know that so much of what Ruby has learned at Sope Creek so far has come from her classroom peers, but if they are younger, there is a chance she isn't learning from them anymore. Also, we've been so fortunate that Ruby has not picked up any undesirable behaviors at school. My girl is a big sponge that observes everyone very closely and follows their lead. If we were to roll the dice with another year, it's quite possible she could have a behavior model that ends up creating behaviors that we have to work hard to correct.

So that leaves us with Kindergarten. So many pros and cons for each of these choices, but especially this one. My girl would love it. Love. it. She would have some great models for speech, lots of new information for her to learn, and I have no doubt that the kids would rally around her and help her when needed. But we know about the delays. And the big question is would those delays put her in a position where she is away from typical peers more than she is with them. I would hope not, but that isn't an question anyone can answer right now.

So we wait and we pray and we pray some more.

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.

Eli's Fall Soccer

Eli played soccer again this fall. He didn't even (to us) consider baseball, which broke my heart a bit, but I'm realizing that I'm holding on to it more than he is. (So I need to stop!)

This season Eli was in U14, so I expected there to be bigger kids on the teams. There were, but there were also enough "Eli-sized" kids to make him not stand out. This league meant using the turf field when playing at home. The turf field is BIG. I thought this might be a challenge for Eli, being smaller and not always the fastest. But he proved me wrong; that boy held his own in the running department!

One of the things I was most impressed with this season was Eli's all-in attitude on the field. He would get to practice early and do everything he was asked to, with hustle. And then during the games, he would throw himself into every play and commit. To the point where he was knocked around the field a lot and sometimes I felt like he was on his tookus more than he was on his feet. The size of the bigger guys never deterred him...crazy because he is the 'risk manager' in our family.

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...