Kitchen Time

Baking.

Cooking.

Preparing.

All of the food prep possible is happening in our house these days.

I'm doing even more than I usually do (I find comfort in preparing and having a few 'staples' around the house most weeks). And Maddux hops in and out of baking interest.

I love it when she does, especially because Ruby is usually more likely to join her in the kitchen (she gets tired of 'mixing' with Mommy sometimes).

Ruby usually goes back and forth between working with one of us and running over to her play kitchen and recreating what she just did.

I hope her desire to create food for people extends beyond the quarantine!

Hi!

Ruby says "hi" to everyone she sees.

Seriously, EVERYone.

This happens as we walk from her school to our car, when we shop through Publix, even when we are driving and stop at a red light. (Seriously.) And she will pursue the people she is trying to connect with relentlessly until they meet her eyes and reciprocate. Hi. Hi. Hi! HHHIIII!

Because I'm not blessed with 47 chromosomes and because I'm a typical cynical person, too often I find myself trying to rush her through this process, especially when the subject does not appear to be receptive. I feel like I should apologize for Ruby overstepping or interrupting.

But that's just dumb. Because when she makes the connection, which is more times than not, the person on the receiving end of her greeting lights up in a huge smile and sometimes even engages back to her with a comment or question.

That often leads Ruby to grab/hold their hand, give a hug, or physically 'love' them in some way too. And they appear to be delighted by the interruption, glad for the overstepping. And who wouldn't? Life is hard and we too often find ourselves putting our heads down and just trying to push through. It's nice to have a reason to stop and look up.

And then I read this post from Heather Avis a few weeks ago. Love it, and she penned it better than I could hope to, so go read her take on this same phenomenon.

At the end of the day, this I know: our family hugs way more because of ruby. We say 'I love you' way more because of ruby. We look into each other's eyes way more because of ruby. She leads the way in connecting with each other and we are so lucky to follow along.

"by self"

as time-consuming as those words are, they are music to my ears. because we didn't know if or when or how you would be able to communicate with us. because there are so many things that are still out of your ability to reach. because those words remind me of how determined you are. shoes are something you first succeeded at hundreds of days ago, yet they still stump you sometimes. today you found these shoes in your closet and set out to put them on and fasten the velcro, again and again, as if to keep proving to yourself that you could do it "by self".

rainy afternoon

everyday we pass the minutes, just you and i. when we don't have therapy or driving to do for your siblings, we cling to the house and yard so that we can breathe, and most of those inside minutes are spent here, in the kitchen. you love to help me, cutting vegetables or emptying the dishwasher or mixing the ingredients. always you pull in the chipped black chair. always you wear those red Elmo shoes.

little victories

much more of a marathon than a sprint. potty training has been taken to a whole new stratosphere with you. it is my most despised parental duty, probably because i don't think i can honestly do anything to will someone to notice a biological need. with your brother and sister, it wasn't fun, but it was quick. with you, we worked tirelessly for over a year, seriously worked, before it started to click. and even though now that you are trained, and now we are done, we know we are not really done. in the back of our minds there is still the knowledge that anything from a virus to an extra fun day in a new environment can throw you off and we will have an accident on our hands. months will pass and try to make us forget, but we don't. so today, when you excused yourself, and successfully did your business solo as you do all of the time now, i silently thanked God, reminded myself that many of your peers' parents don't have the most-of-the-time luxury that i am currently witnessing, and reveled in how far you've come.

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.

A Day In The Life

Ruby. Never would I have imagined a 3-year-old could have such a full schedule. This girl has anywhere from 2-4 therapy sessions each week with a therapist (and countless at home with me), three days of school each week, gymnastics once week, at least two trips to Gigi's each month, and then there's always a doctor's appointment in there too. When we get a day at home with nothing, it is more than rare, so we try to capitalize on it by staying home and playing in the yard and house all day. Yesterday we had one of those days.

I decided to pull out the video camera to capture just a few minutes of what keeps us busy on those days. This always serves as a good reminder to me of all of the very typical things Ruby does. She loves music and attaches herself to songs without any prompting by me. Ruby loves to feed (and diaper and care for) her baby doll(s). Anything that we do surrounding therapy engages Ruby and she is usually happy to participate. She loves books, and is so proud of herself that she recognizes and names most of the letters of the alphabet. And even though I didn't get to capture too much of it, this girl is having multiple conversations with me throughout our day. She says, "baby" "shoes" "mama" "OK" "whasssat" and so many other staple words to give me snapshots of what she is thinking.

Mad Dog

I really wish I'd remember to write down the stuff that comes out of that girl's mouth because it is always Awe. Some.

For now, this is all I can remember from the last few weeks:

• The other night I was rushing her a little to get out of the shower and get her PJ's on so that we could finish up Little House in the Prairie before it was due at the library. She and I had been planning (and looking forward) to reading two or three whole chapters before bed. But she was dawdling while drying her hair and she asked me several times if we could only read one and save the others for tomorrow after school. We had a few minutes of back and forth until I finally asked why she didn't want to read that night. In a very serious tone she said, "Because I want to join the party downstairs." (Lehr had some music on while he and Ruby hung out before her bath.)
• After Maddux attended a ballet performance of Snow White with her class, we were discussing the details. At one point she told me that there were some 5, 6, and 7 year olds dancing too. I asked which part(s) they were playing and she told me, "lions". My memory of Snow White doesn't include lions, so I asked her if there were really lions in Snow White. She looked at me, batted her eyelashes and said, "Think outside of the box!"

Just Another Maddux Funny

That girl....

I make up 'morning work' for the kids each morning. In an effort for them to not lose everything they learned in the last year(s), they do some math and/or reading and/or logic each morning while they eat breakfast. Nothing crazy, but enough to keep their brains from rotting.

This morning I incorporated some good ole language arts. Maddux's work required her to identify some adverbs, some pronouns and some synonyms. She had forgotten what each of those was, so we went through them one by one.

When we got to synonyms, I asked her if she knew what that was. She looked at me a little quizzically and then said, "Shhhh Shh Shh", as she made a shaking motion with her hand. "You know, like on yogurt." And then she put her hand down and looked at me very seriously, indicating that she absolutely meant what she just proclaimed.

They don't make many like this one....

Crawling Track

Ruby has added a new piece of equipment to her ever-changing home gym. She now practices crawling on what we are referring to as a 'crawling track'. Our therapist had a client years ago that constructed several pieces of 'track' to go around a large family bed. Said pieces are not broken apart and she lends them out to clients as needed. The track is basically just some wood nailed together, covered in a a light padding and vinyl. We prop one side up so that she can 'crawl' downhill, allowing gravity to help, or we keep it flat; it works both ways :)

Let's be clear here: Ruby is NOT yet crawling. She's not even scooting, but we all know she's a quick study and it will only be a matter of time. Until then, she'll practice both skills (with much assistance from us) on her track. Go, Ruby, GO!

That Girl

How many posts do I have with that title? If I had to guess, I'd say a dozen or more (per year)...

Maddux and I had a quiet afternoon with Ruby today; after school Eli stayed for a cardio program. While we talked about the day's events, I asked if she made good choices? She assured me she did, and we went through what that meant. One of my questions to her was, "Did you have your listening ears on?"

In true Maddux fashion, her answer was an emphatic, "Yes!" Then she followed up with, "I did not have my not listening ears on...." I laughed and asked her if she left those at home. She assured me they were saved for bedtime.

Let's All Go To The Movies

With two weeks off from school, and a few visits from Grandmas (to help after Lehr's surgery), I thought the holiday break would be a good time to steal away with the two older kids without Ruby. Don't get me wrong: that girl is a rock star and has yet to limit our ability to go to the park, the river, even the movies. But with her nap schedule falling more solidly into place (and there being only two of those each day), I thought it would be fun for Eli and Maddux to hang out, schedule free.

A few months ago when I took the kids (all three) to see "Planes", we saw a preview for an upcoming Disney movie: "Frozen". They asked me right then and there if we could see it at Christmas. So today found the two 'big' kids and I at the theater! What a fun movie; Eli and Maddux LOVED it. (So did I!)

As with most outings with the kids, funny things were said and realizations were made. I think I noticed them more because I was less distracted without Ruby.

• Eli saw some random preview over the summer and commented that he thought the actor that played some part was the same one from another animated movie we saw, just with his hair cut. Kinda funny, since he wasn't saying that the voice was the same, but the actual person (animated) on the screen. When Frozen started, Eli leaned over and said, "I think that's the same actress as in Rapunzel, just with shorter hair." Smart boy, as the two movies do have the same drawing style for the faces, but once again, I was reminded of my little boy's innocence.
• We had to park rather far away due to the large number of people who had the same idea as we did for the day after Christmas. As we were walking (and walking and walking!) to the ticket counter, Maddux chatted along the way but stopped when we got within throwing distance. "Mommy, I'm going to look to see if I know anyone here." That sounds about right because Maddux is *slightly* social and does tend to know a lot of people. Then wihtout missing a beat she said, "Oh, HEY ADDISON!" Yup....of course she saw a friend right away.
•  If you've see Frozen, you know there is a scene at the end that hints at the main character's death. This storyline plays out for about 1 1/2-2 minutes. Just long enough for Maddux to totally tear up and lean on my shoulder. When the character starts to 'melt' and come back to life, I watched Maddux wipe away her tears (many, many tears) and smile. Love love love that sweet girl.
• This one is unrelated to the movie, but it was awesome and I don't think I blogged about it yet. A long while back we were having a conversation about horses and unicorns (and maybe some other horse-ish animals). While we talked, I made some comment about unicorns being horses, but with a horn. Maddux insisted they were not the same at all, horn or no horn. We went around and around about it, but in the end Maddux's defense was that they are different because 'horseys are giddy-up' and unicorns aren't. I guess that's that!

Gifts From The Heart

As we are in the season of Christmas, gifts are on everyone's mind. Because Maddux is who she is, she thinks at least about giving gifts to others as she does about receiving. This, I love.

When it came time for me to make my annual chocolate covered pretzels for my instructors, Maddux and Eli always ask to give some to their teachers as well. This year I asked if they could think of at least one other staff at school to give them to, preferably someone who may not have a specific class that would be showering them with gifts. As expected, Eli didn't think of anyone, but Maddux immediately asked to bring some to 'the lady in the lunch room that always helps me'. This could mean any number of people, as I have to imagine that Maddux receives help many times each day. But Mad Dog did have one specific woman in mind: the cafeteria staff worker who consistently helps my girl with opening her milk or her orange or her cheese stick or anything else packed in her lunch. Love it. Of course we made them for her and Maddux delivered the next day.

While Maddux made a card for her teacher and we sent in pretzels, the day before the holiday party found Maddux scurrying around for another present for her beloved teacher. She took one of the plastic bags i used for the pretzels and found a variety of gems from around our house that Ms. W may like. The items that made the cut were (overly) scented lotion (only used once by Maddux), two unsharpened pencils, an eraser, and a small page of stickers. While inwardly I cringed at the gift, especially the (overly) scented lotion, it warmed my heart to see Maddux thinking so intentionally about what her teacher may like or need.

When Maddux got home from school I asked if she'd given the gift, and if Ms. W had liked it. Of course, she did. When I touched base with her teacher letter, she sent me this awesome note:
Ah it was absolutely precious. Maddux is one of the most precious children that I have ever met. She may drive me up the wall at times, But I love her more and more each time. She has a beautiful personality and an even bigger and more beautiful heart. Not to mention she is as cute as a button. You and your husband have done an amazing job with her. I wish you all a very merry Christmas. Enjoy your Jesus cake and spaghetti and meatballs :) Maddux wrote a beautiful and very structured story of your special family tradition. I was a very proud teacher!

My Hero

Maddux really is my hero. She is everything I'm not and she's everything I hope to be. Confident, socially excellent, brave....I sometimes feel like she is the rock in our family.

Last week the kids helped Lehr work the soccer station at Faith In Action. That translated to Maddux 'wandering' with some friends and their families around to other areas of entertainment. Of course she ended up on the oh-so tall rock wall. Of course, she scaled it. Of course she went higher than Eli. (He later told me, "It was really high up there, Mommy. I was scared!") Of course she did it wearing mismatched knee high socks and two sweatbands and a smile.

Oh that girl....

Chunky Monkey!

Well, I can't quite call her that, but Ruby DID gain a whole lotta weight in the last 5 days! 10oz, to be exact, which works out to 2oz per day...the pediatrician's office joined me in a celebratory 'YES!' when we set her on the scale today. That puts her at 6 1/2lbs, and, per the Nurse Practitioner/Lactation Consultant, I can relax a little now! It's been a long two and a half weeks of making every single feeding count (which means I'm feeding her almost 12 hours of every 24...yikes!), but it's all worth it because she's less of a 'peanut' and more of 'peanut butter' now. (To keep things in perspective, she is still SMALLER than Maddux was at birth, and she was small too!)

More Maddux Funnies

With Grandma Cathie in town, the kids are 'treated' to more surprises than usual. One of those surprises was a stop at Target to pick out a toy while we were in the hospital. Maddux chose a Barbie Doll (oh, the horror) that came with a little dog. When she opened the dog, after we returned home, she was inspecting her new toys. I was nursing Ruby across the room, so she asked Grandma for help.

"The dog's name is written on the bottom...what does it say, Grandma?" My mom checked it out but the print was too small for her to read. She told Maddux that if she could spell it out loud, Grandma could tell her its name.

Maddux reads out, "C-H-I-N-A."

Grandma and I laugh out loud and then tell her it says "China". Maddux loves that and immediately starts calling the dog 'China', unfazed by the two of us cracking up.

Bucket List

Just as we did last year, the first thing we did when school let out was make our Summer Bucket List. The kids loved it last summer, even though we barely made it through half of the list. This year we had many repeats and a few unfinished items from last year, along with some new ones (i.e. "Have Baby").

So far, in just over a week's time, we've checked off four items. Two of those got checked off today: 'Breakfast at West Egg' and 'Biking at the River'. The kids love the breakfast spot on the west side of town, so after swim team this morning, we drove over for brunch. Since it was the same time Lehr usually gets lunch, he even joined us - the kids LOVED that.

I already had the bikes packed in the car, so on the way home, we stopped at the river and rode about two miles. (I did not ride; I walked.) Eli and Maddux were awesome. Usually when we visit the 5K-ish loop, I let them ride ahead and check back with me from time to time as I run. This time, there would be no running, and given how close we are to my due date (and the heat!) I asked them to check back more frequently since I may have to turn back to the car at any time. They were awesome. They stuck together, got along, and checked back so often that I never went more than two minutes without seeing them or talking to them. Bucket List is getting shorter...

Maddux Sayings

They never stop for her! In the last week, here are a few gems:

• For our first meet, I overheard the coaches telling Maddux's group what time to be back at the pool. Later, when I asked her to tell me arrival time(s) Maddux just said, "Mommy, I don't know! (in a panicked voice) You shoulda listened cuz I'm a forgetter." 
• While driving we saw a nice (old) car. I told the kids that it was in mint condition. Maddux asked what that meant and I told her "shiny and with no scratches or dents". She said, "Yeah it is..they must not have any kids."
• Maddux and I were trying to fill a small hole in the front yard...it seemed like the hole was never ending because of the amount of dirt we put in it. I asked her, "Where in the world do you think this hole goes to, because it's so deep?" She said very seriously, "Savannah".

Summer's Here!!!

As great of a year as it's been, it was nice to enter 'summer mode' this morning. The kids got up around 7:30, which meant we had time to have pancakes before Swim Team practice. If that doesn't start your day off right, I don't know what does!

I had already prepped the kids that we had a few errands to run after practice, and they were in great spirits the whole morning. We got Maddux's hair cut, totally cleaned out my car, stopped at Publix and then wound up at home. The kids and I painted the last of the alphabet for the baby's room and then played outside a little before Lehr got home (early because of Memorial Day weekend). We decided to continue on with being outside by working on the garden and backyard. Each of the kids helped Lehr finish up some things on the garden boxes while I planted some various things around the yard. Then we all went to the pool for some family time. The weather was amazing today, but a little breezy for the pool, so we actually ended up only staying about an hour. Kids were tuckered out after dinner, which means our first day of summer was a success :)

Maddux's School Writing Assignments

Maddux brought home backpack-fulls of school work this week. Many art and writing projects she's worked on all year are now residing on our kitchen island. The ones I'm most excited about are her writing...journals, letters, etc. have obviously been a staple in her everyday school life. I like these 'books' most I think because I had no idea they were being compiled, and the content of Maddux's writing in these compilations is brand new to me.

One particular journal contained what appeared to be weekly writing about the weekend. Six of eight entries were about her brother. Not that I should be surprised because she idolizes him so, but even the ones that weren't directly about him contained mention of him. For example, she wrote about losing her first tooth and how she got $1 from the tooth fairy. Her next sentence indicated that she was saving up to buy a bracelet maker because she was going to make a bracelet for Eli. Classic Maddux. Another was completely about him and not in anyway about her. What happened over the weekend, Maddux? "My brother kept his shoes on for five nights and he earned a new book. The book is called....." Also typical of that girl.

One of the two entries that was not about Eli was about a friend, which is really cool. Maddux wrote, "My friend, Olivia, got new glasses for her eyes. She looks really prity with them on."