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!