Tuesday, January 30, 2018

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!

Friday, January 26, 2018

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...

Monday, January 22, 2018

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.

Friday, January 05, 2018

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

Thursday, December 28, 2017


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)

Thursday, December 14, 2017

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!

Monday, November 20, 2017

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.

Thursday, November 16, 2017


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.

Wednesday, November 15, 2017


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.

Tuesday, November 14, 2017

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.