Halloween

We love Halloween. OK, I love Halloween. And any chance I can get to come up with a group costume for us is a total win. Eli was totally in this year, but then he and his friends started talking in early September about maybe hanging out together that night. He still wanted to dress up (and do a group thing!) and trick-or-treat with us, so he proposed going to his friend's halfway in. We agreed and forged on with a costume that would likely just be Lehr, Ruby and I. (Maddux does NOT want to be part of a group costume.)

Then a few weeks before Halloween, one of Maddux's friends from school suggested some of them get together to trick-or-treat. All of the sudden I was facing 'losing' both big kids in the same year. I did not sign up for that! We compromised and decided to let them go to a neighborhood around the corner, but only after they did the beginning of the evening with us. They agreed and moved forward deciding costumes with their friends.

Eli and I talked about it and decided he should suggest ghosts for his group. It's a cool enough costume without giving the impression that it took much thought or effort, and it was easy to pull off when you didn't want to wear it anymore. Maddux and her friends all made Care Bear costumes. They each had a great time with some freedom during the main event (a parents was driving around keeping tabs on them and both groups of friends were in the same neighborhood), but they also admitted that they weren't 100% that they wanted to do the same next year. (Score one for mom!)

So what did we dress up as? I really tried to think of something that wouldn't be as 'involved' this year, and that might not cost so much to create. We have always made/pieced together the costumes ourselves, but that can be as expensive as the 'real 'costume!

Sooo, I landed on ET. Ruby LOVES to ride on the front of Lehr's bike, and she looks like a little E.T. on there, so it seemed like a no-brainer. I decided on Elliot for Lehr (so he could ride the bike) and Gertie for me. Easy costume for Lehr and I, and I just had to figure out the face paint for Ruby. Lehr constructed the bike the weekend before while I practiced Ruby's face, and it all came together really well. She had a great time and still talks about being E.T. (Yes, she's seen the movie a few times and loves it.)

 Ruby had a lot of fun trick-or-treating and seeing friends from the neighborhood. She took advantage of having a bike seat to sit in for about 90% of the night, but that didn't stop her from getting candy from the many people that set up shop in their driveway (our neighborhood really goes all out!).

Buddy Walk

This year's Buddy Walk was last weekend. We knew we would not have the same size team we've had in years past because we honestly didn't get the word out until later, and we weren't as good about our invitations. Also, the Atlanta walk was moved to a Saturday (instead of it's usual Sunday), and that interfered with fall sports for many families. In the end, we were actually glad we did not have as big of a crowd because it was so so very hot!

Ruby and the kids had a blast though, hitting all of the cool spots throughout the day. She especially loved that one of her favorite older friends joined our family for the day and proudly carried the Ruby 'head'.

For the first hour or so, our only 'guests' were Ruby's Pre-K teacher and her daughter. This was SUCH great news for Ruby as she loves Miss Jennifer so much. She seriously stuck by her side the entire time she was at the walk. Right around the time she left, the rest of our team arrived. We hung out and enjoyed the free Waffle House and Kona Ice, and then took our little walk around the parking lot.

Lehr and I got to meet a new family, who ended up joining us at our tent. I got to see so many of my friends from Gigi's and from my tribe, and we loved sharing it all with our typical friends that came out to support. We are so so grateful for all of you in our lives!

A Day In The Life

As I've been answering questions about Ruby and Down syndrome this month, a few people suggested I write about a typical day for Ruby. So I chose Thursday, because why not. Last Thursday this was the breakdown of Ruby's day:

• 6:25AM - Lehr wakes Ruby up. She wakes up easily with a smile and many words, as usual. A trip to the bathroom and the changing out of pj's is in order.
• 6:35AM - Lehr and Ruby make their way downstairs. Lehr starts breakfast prep while Ruby helped. I get home from my run and make Ruby's lunch.
• 6:45AM - Ruby sits down to eat her cereal and requires much coaxing, as she doesn't usually like to eat so quickly after waking. (Yes, that means every school day we go through this.) I attempt to brush and fix her hair, which she fights because "I eating!" One or both of the big kids make their way downstairs in various states of dress and various states of grouchiness.
• 7:00AM - I rush Ruby through brushing her teeth so we can get in the car. Once in the car, we recite the months, count from 1-20, and the rules of school. The rest of the time I ask Ruby many questions that she should know answers to (How old are you, when is your birthday, where do you live, etc.)
• 7:15AM - I walk Ruby from our car to the school lobby. We meet one of her teachers who walks with her back to her general education classroom. (I return home and make all of the IEP-prep calls and send all of the IEP-prep emails and read all of the IEP-prep articles and studies and examples because it's IEP season which feels like it's tax season and I'm an accountant.)
• 7:20-8:00AM - Ruby works with her peers on morning work.
• 8-8:30AM - Ruby gets pulled out for small group (mostly one-on-one) instruction.
• 8:30-11:00AM - Ruby returns to her gen ed class to work with her peers.
• 11-11:30AM - Ruby's OT comes into the classroom and works with Ruby during center time, both on 'regular' centers and also some designed to help her fine motor skills (button, zippers, thera-putty, handwriting) 
• 11:30-12:00PM - Lunch - Ruby eats with her peers.
• 12:00-12:20PM - Recess. Towards the end of recess, Ruby gets pulled to work with her school speech therapist.
• 12:20-12:50PM - Speech
• 12:55-1:25PM - Ruby returns to her gen ed class for math.
• 1:30-1:50PM - Ruby and her typical class go to PE.
• 1:50PM - I pick Ruby up in the lobby of the school and we drive to Occupational Therapy. The drive only takes about 25 minutes, so we have a little extra time to kill before our appointment. Ruby eats snack and we talk about her day while we wait. I read through Ruby's school report to find that she struggled with keeping her hands to herself during gen ed work this morning. She also had an 'issue' with a few kids at recess. It's not clear what happened, and Ruby's not a huge help in relaying the sequence of events.
• 3:00-3:50PM - OT - Ruby works on a laying down swing, for balance, pushing herself on her stomach by using her hands, which targets her shoulder muscles, writing on a wall board for better finger placement, thera-putty to work the fingers, crawling through an obstacle course to help with torso/upper body strength, and finally throwing a ball into a bowl for focus, accuracy and arm strength.
• 4:00PM - Ruby and I drive to the middle school to pick up the big kids. She 'reads' in the backseat until we get there. We have 15 minutes before XC practice is over, so we sing a few school songs and go over our sight words.
• 4:30PM - Eli and Maddux (and a few other carpoolers) enter the car and it's a loud crazy drive home. 
• 4:45PM - We get home and Ruby's speech therapist pulls in behind us. She works with Ruby and I on EVERYTHING from tongue placement to sentence structure to working independently...this therapist is my 'glue', as I referenced on FB this week.
• 5:15PM - Daddy comes home and sneaks upstairs to not disrupt Ruby's focus. (Good man.)
• 5:45PM - Our therapist leaves and I start dinner. Ruby alternates between playing and helping me cut vegetables. Once dinner is cooking, Ruby and I go over her sight words a few more times. Then we work on a few worksheets for practice. Dad and Eli leave for soccer.
• 6:15 - The girls and I eat a quick dinner. Maddux and Ruby play while I put away the dishes. The girls end up going to their room and getting into the dress-up stuff. As I'm working in the kitchen, they come down three times in three different outfits. Great for practice putting on and taking off clothes - not great for the state of their bedroom floor.
• 6:30PM - Maddux works on homework and Ruby and I pull out the Manga-Tiles and work on pulling them apart and differentiating color and shape. 
• 6:45PM - The girls and I go out front to play. Maddux hangs out with friends while Ruby and I play with the tee, bat and ball. Again and again we work on swinging and hitting the ball. Then we pull out the 4-square ball and practice bouncing and catching. It is not something she has down yet, at all.
• 7:10PM - The girls and I go inside and head upstairs. I give Ruby a bath while Maddux works on homework again. Once Ruby is out, we brush teeth, use the bathroom, and change into PJ's. No nap in the car today, so my girl is exhausted and will likely fall asleep during the first book.
• 7:20PM - Ruby and I snuggle in her bed and I read a book to her. Six pages in and she's cross-eyed. I'm out of her room in five minutes.
• 7:30PM on - SNOREFEST

Not the most exciting account, but a good reminder that Ruby's days look both very similar to any other child's, and also very different. In general, she has the same structure, but how some of those time slots are filled can be different.

The best way I can describe it is that Ruby rarely has a wasted moment. While she sees it all as play and loves the one-on-one time I give her when we are working on the many skills we need to work on, Ruby rarely gets a chance to just play: it's all very intentional. Chalk becomes a game of testing her for colors or body parts, card games are used to work on her number awareness and same/different/matching concepts, kitchen play can double as speech with the many items to identify and 'commands' she gives me, story time is a full-circle opportunity to ask questions about the story, point out colors or shapes, count objects, and recognize sight words. Ruby works hard, all day every day, just to try and bridge the developmental delay gap. And yet she dances through it like it's the most fun thing in the world.