Christmastime Is Here

Probably our longest lasting holiday tradition is going to cut down our Christmas tree as a family. We stumbled upon a tree farm when Maddux was a wee little one, and we've returned every year since. Because I know how our schedule(s) tend to get, especially during December, and because I know I'm cheap thrifty, and while I like to send Christmas cards, I have to get that Thanksgiving weekend 50% off deal, I decided to tempt fate and try to get our family photo at the tree farm. Hey, we were going to be there anyway, amongst the beautiful background. Why not just throw on some coordinating clothes and let me take a handful of photos? And then we could ask a stranger to snap a few photos of the five of us together.

Even though I was formulating this plan all week, I don't think i clued anyone in until the morning of, so we had a little bit of a scramble to find clean, photo-worthy clothes (meaning Eli and Lehr may or may not be wearing the same thing they wore last year). Ruby absolutely took her hair out on the drive to the tree farm (despite my labored efforts to braid it up for 15 full minutes at home). And when we arrived, Ruby's boots were not in the car. I honestly wasn't phased; Lehr could hold her for the photos and I knew most people wouldn't even notice.

The big kids did what they do every year: feign protest to me shooting photos.

I made each of them pair up at some point, jackets were sometimes on and sometimes not (it was FREEZING!).

I got a few of Lehr with each one, shoes or no shoes.

Then I passed off the camera to Maddux so she could take a few of me with Ruby and me with Lehr. As expected, she was amazing.

Finally, I picked the lucky family to take a few of us all. Some maneuvering of our people later, we had 4-5 shots of us all with eyes open and pleasant looks on our face. Thank you, random stranger.

And we also had these fun ones the rest of the time.

IEP

Those three letters carry so many feelings with them, and they are all over the map: dread, anxiety, hope, fear, defensiveness, (over)protection, anxiety, pride...did I mention anxiety? The lead-up for them has been so anxiety-inducing for me that I actually had an 'episode' during one a few years ago. It was an IEP (Individualized Education Plan/Program) called by us after Ruby was (wrongfully, IMO) denied qualification for the Special Needs Pre-K. We worked for six months to prove that she needed to be in there, so that meeting was one I was especially nervous about, as I thought we might have to continue the fight. We didn't - Ruby was given correct placement, but not before I felt like I was about to pass out and had to excuse myself from the meeting for 10 minutes to get fresh air slumped against the building outside of the school.

I know...sooo professional!

Today's IEP was scary for me because it was the first one since she entered the elementary school. With real report cards and typical classrooms and all kinds of areas where Ruby needs help. The year has not been going perfectly, and that definitely caused me some anxiety when it comes to what her team might suggest for placement going forward. She started the year in the inclusion class (typical kids, about 4 of them have IEPs), with only one segment of pull-out services (this is considered a big win for a child with Down syndrome in our county). One of my many fears was that they would suggest that she be pulled out more often, or (even scarier for me at this time), that she be in a different classroom altogether. For the last month I have been meeting with friends who have gone before me, acquaintances online who are in the know, peers who have insight, therapists who know Ruby - all in preparation for this meeting. I've been over and through everything from what we think her placement should be for her to be successful, to what is legally required, to what is actually realistic, and everything in between. I've said it before: it feels like I'm cramming for a semester exam, but I'm not sure of the specific class I'll be tested on. When I went into this meeting today, I wasn't sure what they planned to recommend for Ruby, which means I didn't know what kind of defense, or offense, I needed to pull out.

The good GREAT news is, it went well. Very well. There were three extra attendees in the meeting, all either county level or school administrators, and those three brought a lot to the table. So much so, in fact, that I had a looong list of things I wanted to discuss and point out, and one by one, members of the team (many times two of the three) brought them up before I had a chance, and presented them in our favor. It was as if they were my advocates and had already seen my notes.

So, the battle is not over. There is much hard work still ahead, for Ruby, for the team and teachers, and for us, but there will be some new supports in place that should help her achieve more success. But more importantly - no, MOST importantly - today gave us a glimpse of at least two 'new' people that see Ruby. Truly see her, and are in her corner. That is what I want. That is what we have with some of our therapists, that is what we had with her Pre-K teacher(s), that is what makes all of the difference, in my opinion. People in her corner give us hope. People in her corner see her potential and work harder to help her achieve it. People in her corner are God's way of giving me renewed strength in my advocacy for Ruby. So as far as I'm concerned, today was a rainbow!

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.

Leader In Training

Eli has long been one to tag along with Lehr during worship band rehearsals at the church. When he was a wee one, he would tag along and the older boys would tolerate play with him. When Eli got a little older, he would play drums with some of these older boys, and in recent years, Eli has joined some of these 'elders' at youth group and in the youth worship band. If you ask Eli, he will probably tell you he considers some of the 16-20 year old crowd more 'his people' than the ones his own age at church. That makes sense considering he spent a week with some of them serving at a camp last summer, and he spends countless hours each month in rehearsal with most of them.

Recently the youth group has started promoting a Student Leadership Team, to get some of the more seasoned and involved youth to work together to connect with and involve other youth in various ways. I love that Eli signed up for this team before even consulting us. We've always told him that while he has always benefited from having someone 'ahead' of him investing in him, he can (and needs to) turn around and do the same for someone younger than him.

Fast forward to this weekend when Eli's college friends wanted to make a video promoting Youth Sunday at our church. (This is an annual 'thing' where the youth run the show in the worship band, the sound controls, the lighting and production, the greeting and parking team...everything.) Eli and I brainstormed a few ideas and then he spent the day with two cool 'kids' making this video.

Cross Country

Maddux and Eli are both running this season. Maddux was not very thrilled to start this sport, but she's made some good friends in the process, and (I hope!) learned something about herself. (Mainly that she is fast when she wants to be and she can do more than she thinks she can.)

The kids have had three meets so far. Eli has improved his time significantly from last season, and bested his time on a few courses. Maddux has scored for her team (only top 5 score), and she's improved her time as well.

Go West, Young Man

This was a big summer for the big kids. We sent Eli and Maddux out west to see my parents and brother's family just before school resumed.

On an airplane. By themselves.

They did great, traveling together, and enjoying the spoils of having the head flight attendant watching out for them on their flights. And once they arrived, they lived it up for a full week with Grandma Cathie and Grandpa Jim. They spent almost all of their time with Uncle Jay and Aunt Ingrid and all of their cousins. They golfed, boated, paddle boarded, swam, kayaked, watched movies, went to an amusement/water park...the list was long.

Eli brought his go pro camera along and documented the whole trip, putting together this great video when he returned.

Onward

Today I came face to face with the reality that my bigs really are big. Eli and Maddux started school today, meaning they are both in Middle School.

Obviously I know this, and have known this, but seeing them both dressed in their chapel uniforms this morning, Eli with his newer haircut that makes him look like a cool teenager, and Maddux with her long legs and maturing face, it really hit me. Actually, it really hit me after school when they came in with their backpacks and laptops and cross country clothes, all sweaty from practice. They looked at least as grown up then, and they were so mature in their download of their respective days. Even better, they were getting along! It's like putting them in the same building actually helped their relationship, even if just for one day! They were totally talking and exchanging information about their day(s), respectfully and kindly. It's a first day of school miracle!!!

Maddux enjoyed her first day of 6th grade, meeting new friends and briefly connecting with a few she's met in the last week. Eli has lots of friends in all of his classes, which isn't a surprise as the small school allows you to know everyone (thus making them your friend). I was able to attend the first day convocation, which culminated in me getting to pray specifically over Eli before he started his day. That was awesome and something I hope he thinks was awesome too.

Shadow Monster(s)

First off, this is not a cry for help or even support. I often purge my brain in this way towards the end of working through whatever 'thing' I'm struggling with. Then I post after the fact to hopefully remind other parents that they are not alone...to give them the company that I know I seek when I'm in the weeds. I always want to be transparent on this blog - I try to make this as open a book as possible. I know when I'm in the depths of it, I find hope in reading about other parents who struggled/are struggling in the same way. (Kind of a misery-loves-company meets strength-in-numbers.) And while I am 100% Team Ruby, and a firm believer that we are The Lucky Few, I never want people to think that things are always perfect or good. With all that said, here we go...

Demons. We all have them. Mine are so tricky that they hide in the shadows for extended periods of time, making me believe that I've outrun them only to turn a corner one day and come face to face with them again, usually much larger than they were before. And these demons, they are ugly. They are SO ugly and they expose a broken ugly side of me that I'd like to ignore. I think that's part of what gives them so much power over me; their ability to remind me that these demons are here because I let them be here, because I maybe even create them.

I am realizing that there are times when I realize that I'm still going through the grieving process of Ruby's diagnosis. Not the cancer one; that would be the easy one for me to deal with because that makes sense. Of course cancer sucks (*sucked*); no one would disagree with that. And there was not much I could do about that diagnosis...take her to the hospital and pray. It was out of my hands.

Nope, I'm talking about the Down syndrome diagnosis. Lately I have found myself still in the grieving process of that. I guess it's silly that I might have thought we'd be past it now or something. I love Ruby and the community we're in, but that doesn't mean it's not different than what we expected. And that still hits me out of the blue sometimes: I grieve her not being the child I thought she might be. Which is stupid and crazy because our family is what it is because of (the awesomeness of) Ruby.

I really don't feel like I try to compare Ruby to others, and I know, I preach!, that comparison is the thief of joy. But so many times lately I am hit with a side-by-side that I wasn't looking for and it takes all of the wind out of my sails. Sometimes it's a comparison to a typical child and sometimes it's one in our T21 community. Honestly, I feel like it's so unexpected because we strive so hard to help our kids have everything their typical siblings have in the way of experiences and education. And in that pursuit I think it's easy to forget that sometimes we have to adjust our expectations. At least that's true for me....some of these things that I'm feeling defeat in are things that maybe weren't realistic for Ruby right now, but I forgot that as I got caught up in the attempt.

Let me tell you that the shame and self-disgust associated with acknowledging all of those feelings -  the comparison, the defeat, the self-pity - is currently fighting the crazy grief for top billing in my head and in my heart.

There are still times when I catch myself somehow hoping that certain things linked to T21 are behind us, even though I know they aren't and won't ever be. It's not like she's going to outgrow it, not that I necessarily want her to... But my goal-oriented, selfish side takes over sometimes and tries to expect that we've worked hard enough for *that* to not be an issue anymore. Or that we should not have to struggle with *that* again. (Insert *that* immature or undesirable behavior, or hard hard fine motor or gross motor or speech struggle of choice. I can give you a long list of ones I let stumble me if you need help coming up with one.)

And I'd be lying if I said I never found myself watching another five year old and parent with a deep longing over the ease at which the child plays, dresses themselves, conveys their thoughts, eats, toilets, walks through a store or a restaurant. I have turned into this crazy helicopter mother that I thought I'd left many years ago when Eli was still a toddler. Because I don't know when Ruby will leave the group and not come back. Because I don't know if Ruby will get herself to the bathroom in time. Because I don't know when Ruby will need me to pull her off of a friend that she is hugging so hard that the child gets knocked to the ground. Because I don't know if she is going to get too rough with a dog we see on a walk. Because I don't know what is going to happen next and her actions are ones that her peers will remember long after she's forgotten and I don't feel I can risk her alienating them. Not because we don't work on these things - our list of daily 'reminders' and 'work-on-it' is so long that it makes my head spin.

As a true Type A, because I am so focused on goals and meeting them, all of this stumbling is something that breaks me more than I'd like as of late. There are days when I feel like this paper-thin fragile shell of who I was, of who I want to be because of how easily I'm disheartened. I haven't been in the typical work force in 13 years, so my day-to-day focus is almost entirely the kids. I know better than to measure myself off of my kids' accomplishments or behavior, and I think I do a pretty good job of that when it comes to the bigs. But with Ruby, my daily 'job' is more intense and more involved than it ever was with Eli and Maddux. Or at least it's intense and involved in a different, very different, way. So when she misses the mark on things, without meaning to, I absorb it like a huge blow to my ability. I can't seem to get myself out from under the inadequacy I feel after several of those a day.

I feel like I spend so much time, energy and hope on 'games' and flash cards and research and therapeutic practices that I can use in her everyday life. It's a lot of pressure on her, I know, but she is such a rock star that she performs for me and makes it look like she's loving every minute. That pressure on her also equals pressure on myself. Because if it doesn't pan out, if she doesn't behave in the way I think she should, if she doesn't meet the next developmental stage, my trust in the process is shaken. Immediately I'm filled with doubt of my efforts as her therapist and teacher, and doubt of my ability as a mother. Literally, if she doesn't meet a benchmark, or displays negative behaviors, I mentally make check-lists of things I should be doing instead of what I'm doing. Or I go through her toys and over analyze it's value as a toy that is furthering her or holding her back, developmentally. I don't do this at the end of the month or even the week, but in the moment, which means I'm in 'revamp' mode more often than not. My brain goes into overdrive trying to find 'the solution' (as if there is a solution for any childhood bump in the road). I'm telling you, it get cray up in there!

Hello, enemy. Hello, demons.

I know this is not what I need to be giving in to. I know these thoughts and words are not of God, but instead, against God. And I also know that I am being grown, yet again, stronger is some way. I know that one way or another, this will help me to refocus my efforts and love and loosen my grip. But dangit, it's hard. And hard does not always equal bad. Sometimes hard is just hard. But that hurts. It hurts when I watch the video of her and I on the practice bus ride and see her excited smile as she said, "I like it.", only to have her choose to behave in a way that prevents her from being able to ride the bus less than a week later. It hurts when I see her get so excited to be with friends that she acts in ways that make them not want to be around her. It hurts when we put so much hope into something - anything - only to have that hope dashed. It hurts when I spend a moment marveling in her awesomeness only to step foot on a playground filled with kids her age and feel deflated when I see and hear them effortlessly doing and saying things that are so far out of her reach right now. The highs and lows hurt. That is probably the biggest hurt because it means I have to acknowledge that I am the one making the comparisons. Ugly. Ugly. Ugly.

I apologize that this is all over the place, rambling, and possibly out of order (but, again, the 'cray' of my brain). This is the raw, this is the real.

A 1st On The 1st

We are swimming in the eve of the first day of school (on the first day of the month). Any parent with a student, especially a Kindergartner, especially one with an IEP, feels the anticipation on this day.

And all of the emotions.

Hope. Fear. Pride. Anxiety. Joy. Dread. They are all present.

Hope for a year that allows success and thriving.

Fear that someone on their child's team or in their child's class won't see what you know.

Pride that their child is a year older and has a more diverse skill set.

Anxiety over wondering if that skill set will be enough.

Joy in the first day preparation routines.

Dread for the moment(s) when they will be smacked in the face by the reminder of their child's delays in the daily scope of a classroom setting.

You can fill in the blanks for these emotions with a variety of scenarios: behavior notes sent home, kids being unkind, bathroom or eating accidents, inability to meet IEP goals...the list is infinite.

But today, and this last week, I am honestly choosing Hope and Joy.

On this day last year, Ruby started in a classroom that allowed her to go to amazing places, academically, socially, verbally... The team and experience combined with our efforts at home and in therapy prepared Ruby for this big year of starting Kindergarten. In that, I have so much Joy.

In the last week I've met Ruby's new teacher, seen her classroom, reviewed with Ruby some of the many school 'skills' we've worked on all summer, and prayed like there is no tomorrow. And all of that has given me Hope. Hope for a year as successful as last. Hope for classmates that see the value of Ruby. Hope for my agenda and Ruby's team agenda to mix and mingle and move in the same direction. Hope for my girl to soar.

In preparation for this day, I wrote her head teacher a letter. Actually I wrote her two letters, each with several drafts, because that's who I am. (I can get lost in the trees of such a task very easily, especially when I view the stakes to be so high.) I wanted to give her a brief, but helpful first glimpse into who Ruby is. And who her support at home is. The letter was well-received, so I'm counting that as a step in the right direction. As I was writing, I definitely googled around to see if I could find an example to work from. That proved to be a struggle, so I'm posting my letter here in case it helps anyone else tackling the same task.

Hello!

It's the beginning of the school year, and we are so excited that you are a part of our daughter's team. Ruby is a very enthusiastic learner who loves to come to school. She attended (this school) for preschool last year, and she has worked with (Speech Therapist) and (Occupational Therapist), so she is very familiar with the school. Navigating preschool was a road of trial and error, and I expect it to be similar as she moves through kindergarten.

We don’t expect everything to go perfectly right from the start, and we know we will all learn together. I hope this letter will help start the ongoing conversation of how best to help Ruby and help her teachers, and I want you to know that we are always willing to communicate and listen.

 

I’m sure I am giving you information you already know about Down syndrome (T21), but in an attempt to let you know what it means for Ruby, I’ll share some general information. Ruby is more like her typical peers than different, with her own strengths and challenges. Just like every other child, it will take a little time for you to get to know Ruby, and it will take us a bit of time to learn how things work in elementary school.

 

All students have unique needs and learning styles, and Ruby is no different. However there are some common learning characteristics of students with Down syndrome that I wanted to share with you. 

1.     Students with Down syndrome tend to be visual learners. Ruby learns best by modeling those around her. Visual memory is often a strength; pairing pictures with new concepts will help her to remember.

2.     Students with T21 often have struggles with working and verbal memory. Ruby will likely need more practice with remembering/recalling multi-step directions, especially when they are given orally.

3.     Students with Down syndrome are often very social. Ruby is eager to interact with and help her peers. (She has done well in the past with learning their boundaries to her greetings/affection.) However, Ruby often lacks the same verbal skills her peers possess. She is very capable of forming meaningful friendships and relationships with peer and adults, but in the beginning, other students may need help understanding her spoken words.

Ruby’s greatest areas of strength are:

·      Memorizing short chunks of information (3-5 items on a grocery list, answers to basic questions about herself, sight words).

·      Social interactions. Ruby makes friends very fast and will run to comfort a friend who is sad or aid one needing help.

·      Willingness to learn. I cannot emphasize this enough; Ruby REALLY wants to learn and loves to work. When given enough support, she will rise to whatever level you expect of her. She does very well with routines and expectations.

Ruby may need extra help with:

·      Fine motor skills. Her handwriting is currently a big weakness, so modifications in the way of letter magnets or picture identifiers may help her stay engaged in lengthier writing exercises.

·      Impulse control on helping others, asking before sharing supplies, and appropriate sitting (i.e. in a chair, not on the floor, etc.)

·      Focus during counting. Ruby can count to 20, but the higher teens often stumble her. When she slows down and points to each object as she counts, she has success.

Please let me know how I can support you while Ruby is in your classroom. If you have questions, please know it’s always okay to ask; my contact information is listed below. I look forward to working with you this year, and know that together we can help Ruby have a great year!

GiGi at GiGi's!

Ruby and I spend a lot of time at GiGi's Playhouse; it's our go-to spot most Saturday mornings. And GiGi's wouldn't be in Atlanta if it wasn't in Chicago first, where GiGi's mom had the brainchild to create such a cool space about 15 years ago.

Fast forward to last week when we got an unexpected visit from GiGi and Nancy Gianni at both our Atlanta area GiGi's locations. Ruby and I were unable to meet them at our regular GiGi's, so we made the trip to the 'new' GiGi's the following day.

The pair was so outgoing and jumped into the kids' play right away. (LOTS of Ruby's friends were there that morning.) Ruby and I got Nancy's book, and GiGi signed it for us! And then I had to get a photo of Ruby and two of her buddies that she met at GiGi's the first two times she and I visited.

Absense Makes a Heart Grow Fonder

Not that it's possible for Ruby to be more fond of her siblings, especially Maddux, but two long stays away has made her miss them a lot.

Last week the big kids went to an overnight camp for the better part of a week. Ruby kept quite busy with her own camp at GiGi's, but was super excited to see them return for the weekend.

Unfortunately, this morning they left again, this time for a full week to see Grandma and Grandpa. We didn't talk about it too much beforehand, but apparently Ruby got it from the little mentions we'd made. They woke up, ate, and played fine, but when Maddux said, "OK, Ruby, I have to go now." Ruby burst into tears and sobbed in Maddux's arms.

She adores her big sister!

VBX

Yet another fun VBX in the books. As we are in the year of many transitions, this year's VBX added another 'new' experience for our family. While Lehr was still in charge of music, and I was mostly behind the camera, and Eli was playing drums all week, Maddux joined the volunteer ranks and Ruby attended as an official camper for the first time!

When we first talked to Maddux about where she might want to volunteer, she said she wanted to do the motions on stage, for sure. That was a no-brainer, as many of the youth do that in addition to their other roles. However, last summer Maddux was exposed to a song that she knew would be great for VBX. So we kept it in our pocket all year and when it came time for Lehr to pick songs, she campaigned hard for "Royals". It worked and Lehr chose it, but what was even better is Maddux and I worked together to come up with the motions for that song. She took a lot of pride in it, and was even able to help out the volunteer in charge of teaching the dances. So fun!

And it should come as no surprise that Maddux chose working with a group of kids as a 'group guide' as her other (main) job. Also not shocking was that she wanted to help in Ruby's group. This was perfect, as we were not sure how to ensure a successful camp for Ruby without one of us present.

But without us even mentioning that to Maddux, she stepped up. (In the end, Lehr ended up working with that group as well.) I loved seeing Maddux help the kids in her group - while she was there for Ruby, she gravitated towards two other little girls more often. She has such a beautiful gift!

Ruby had a great time, eating and playing with her friends. Maddux had a blast, dancing and getting to know new kids in the youth group and 'guiding' her kindergartners. And Eli loved playing drums and working with two of his 'big' friends as a water boy.

My Happy Place

Today was a good day. Like, a really good day. The big kids weren't even with me very much...what made it good was what they were doing while out of my house.

Maddux is in the summer of transitions. She's about to start middle school which means new opportunities with church and sports and youth group... so much at once! Regarding church, she gets to attend FUEL (the youth group for 6-12th graders), but she is also without a 'class' during the actual church service each week. When Eli is not playing in the band for the elementary kids' service, he sits with friends (or us, if we're lucky) in the big service. Maddux has already found a home, serving in the preschool area any time they will let her. Since we are always short on volunteers, they let her every week! She has such a heart for kids, especially the little ones, so she loves doing this. I asked her last week if she would ever come sit with me in the big service and she kind of wrinkled her nose and said, "Maybe one week, but only if we were here for both services so I could still work with the kids." Not at all a shock since anytime I try to find her at church, she is under a pile of kids on her lap, reading books and engaging them in songs.

Today my girl served with some littles (maybe 2-3 year olds?) alongside a family friend. I didn't know the friend was in there with Maddux until she ran up to me after the service. She could not stop raving about Maddux and how great she is with all of the kids, not getting frazzled when they are upset, but instead calmly meeting them where they are. She reminded me of all of the amazing ways God has blessed Maddux with the gift of serving others. "It was an honor to work with her today." There are so many times I see her with Ruby and think the same thing...

Maddux does not get this from me: our social IQ's could not be further from one another. I honestly feel it is an absolute God-given gift, the way she is able to connect with people and make them feel at ease. I saw it last week also when I drove her and a friend to camp each day. Maddux and her friend hadn't had many opportunities to hang out in many months, so I wasn't sure if the conversation would flow on the first day. But Maddux never missed a beat, sitting in the middle seat with her friend instead of the front (as she would prefer), asking her friend all kinds of great, specific and intentional questions about her summer, helping her to feel comfortable. I seriously drove the whole way with my jaw on the ground, in absolute awe at her social ease and intelligence.

On to the boy... It's no secret that music is something Eli loves. He's been playing drums since age two, and he's picked up the trumpet and guitar in the last two years. Even though he only started with the electric guitar just over a year ago, it's where he spends most all of his free time these days. This week he was listed as the lead guitar for the Sunday morning kids' services for the first time. He was SO excited. And when he went to rehearsal on Thursday night, Lehr said he was shocked at how well he had prepared himself and how well he played.

So this morning, Eli was at church by 7AM, rehearsing and then playing guitar in two services. Then he returned to the church about an hour later to set up and rehearse for the next week's camp. (At this camp, he'll be playing drums with another worship band.) In total, he was at church for about nine hours, worshiping with two different instruments and two different bands. His passion for those instruments right now is impressive. And in a house where music is king, it warms my soul to see him working so hard on it and holding his own so well.

School of Rock

Ever since Eli was a wee one, Lehr and I have seen advertising for a music camp in our area. The "School of Rock" offers lessons and camps, and appeared to cater to the less traditional music education (which we loved). Between the cost and wanting to make sure he was old enough to really get something out of it, this is the first year we signed up. As expected, Eli chose to sign up for the camp with his electric guitar, rather than drums. What's better is his best friend, Drew, decided to join him (on guitar also) at the last minute.

The boys had a good time through the week, learning some classic rock songs on their guitars. Eli dabbled a little in bass, mainly because they needed someone and he could adapt his skills quickly enough. The week culminated in a concert, showcasing maybe 5 or 6 songs, completely performed by the kids from the camp, including, "Another Brick in the Wall", "Satisfaction", and "Another One Bites the Dust".

Eli enjoyed himself, especially because Drew was there, but we were reminded (again!) how blessed Eli has been to have so much experience already playing with a band (of adults or kids) consistently for the last several years at church. He's able to prepare at home and walk into a band situation, ready to play and work together to make necessary adjustments. This camp is a great way to provide that learning experience for kids, it is just one that Eli has been fortunate enough to have had already.

Gigi's Gala 2018

If you know our family, you know that we love Gigi's Playhouse. Since Ruby was born we've visited the Atlanta location several times each month, if not weekly. We've met friends and therapists there that will always have a special place in our history - in Ruby's life, from John and his therapy dog, Owey, which Ruby saw often for a while before she started school, to Ruby's peer, Norah (and her mom and her siblings), who we still see at least once/month.

As a free facility, fundraising is necessary, and the biggest fundraiser of the year is the Gigi's Gala. It is an all-out, black-tie, fancy schmancy affair that is unlike anything I've ever been to before. I've helped with the photography side of it for two or three years, and last year Ruby got to attend the 'cocktail hour' with Lehr. She LOVED this last year, as she got to hang out with a volunteer and dance and play, with Daddy as close or far as he felt comfortable.

This year they upped the ante on us: I shot it, Ruby and Lehr attended, and they asked me to speak. While the attendees of the Gala have a connection (and some funds to share), they are not typically people I see at Gigi's, so I got the idea that having me speak was a way to share a 'real life' Gigi's family.

While it was a huge honor to be asked, I've never given a speech before, especially not to a more 'civilized' audience. (I give speeches to my kids every day, if I'm honest, but those are more of the rambling kind, if you know what I mean.) I wrote my speech, had someone proof it for 'flow', and then practiced talking through it endlessly in front of Maddux and in my car. For weeks I would dance around the words, trying to find the best phrasing and cadence.

The night of I was scared to death, and my last minute practices in the restroom were not going too well. But when I took the stage it became a bit of muscle memory and I was able to wander through my speech, ad libbing where I needed to and hitting the points I needed to. I only had to look at my notes once (the same spot that always made me pause when I was practicing)! It was an amazing experience, to be asked to move way outside of my comfort zone. I so enjoy connecting with families, new and 'old', and helping newly diagnosed moms when I can. But to speak so broadly and formally was scary, so I was incredibly humbled to be met by numerous attendees (in tuxes and fancy gowns, no less) after I got off stage. They wanted to thank me and shake my hand and compliment my speech and presence. It was surreal.

Lehr and Ruby left almost an hour before I took the stage; we both knew pushing Ruby to 'behave' until 9PM in that overstimulating environment would be pushing our luck. But I reminded him that his presence would have probably made me even more nervous. (A good friend pulled out her phone and caught the speech on video for Lehr, and of course I have my notes.)

Imagine you are invited to the biggest party of the year. For months you search for the perfect dress. You want to find the shoes that make just the right statement, and your jewelry has to be just right. To say you are excited is an understatement. But as you open the door to enter, all noise stops and everyone's eyes are on you. Your excitement changes to panic as you realize that not only are you late, but you are way overdressed.  Every table is at capacity, every seat is taken. And now people are staring - but trying not to stare - as you nervously move around the room, anxiously searching for an available chair. Finally, you see one. You rush over and sit down, breathing a sigh of relief as you hear the party start back up around you. And what's even better, when you look around the table, you find friendly faces offering you a drink and asking about your day.

When my daughter Ruby was born, the new world we found ourselves in was that party, and Gigi's Playhouse was that table.

We did not have a prenatal diagnosis, so when Ruby was born with Down syndrome we were thrown into something we had never prepared for. We had no connection to anything related to Down syndrome, but luckily for us, a close friend found Gigi's Playhouse through a Google search. I still remember the first time Ruby and I visited Gigi's. We attended Therapeutic Thursday, which is a program involving physical therapists and speech therapists and occupational therapists, all working with attendees and their children in whatever capacity needed. But the therapy part is not what I remember most about that morning; it was the instant connection I had with two other moms I met. We talked all morning, exchanging similar diagnosis stories and comparing notes. The next week, I couldn't wait to go back. But instead of those two moms, I met and connected with a few different moms, with different aged kids and different stories. And the following week, the pattern continued.

It's easy to see how I quickly became a Gigi's Playhouse addict. It gave me such an great opportunity to join up with other families, families who were walking the same walk as us and who just got it. Not to mention, every time I attended, there was a volunteer therapist there helping me. This was huge - HUGE - for our family, especially in the early days when we did not have an established community to go to with our questions and concerns.

We celebrated my daughter's fifth birthday yesterday. Five years of Ruby. Five years of Gigi's. In the last five years, Ruby has visited Gigi's pretty much every week of her life, even through an eight month season of leukemia. And why? Because she has therapists and tutors and volunteers...  and friends. She has more friends through Gigi's than either of her siblings ever had. And those older siblings have been to Gigi's Playhouse dozens of times to participate in programs with her. They know Gigi's kids by name, and they have seen the great worth of our Down syndrome community. And me? I have a tribe, A HUGE tribe, that wouldn't be nearly the size it is without Gigi's Playhouse as it's backbone. This community is so important to me, so vital to my daily success as Ruby's mom that I even got a matching tattoo with a bunch of them earlier this year.

My family is forever grateful to all of you for supporting the efforts at Gigi's Playhouse, for seeing the potential of our kids, and for giving us a seat at the table.

Shark In The Water

Another season of summer swim is upon us. Maddux and Eli have been doing this since they were 4 and 5 years old, and they are still goign strong. Each year, practices start, after school, a few weeks before school even finishes. Then practices continue, but in the morning hours. This year, with their ages being so 'old', their mornig practice doesn't start until 10:30AM...that is late!

A few meets in, and both are having success at having fun, with the occasional blue ribbon. Maddux claims her favorite stroke is back stroke, while I think Eli is favoring butterfly these days.

Ruby was not quite up to swim form for this season, but the big kids are excited for her to hopefully join next year.

Ruby is 5!

"Me Booth-day!"

This is what Ruby has been telling us for the last week. She knows her birthday is on "zoon seffen" (June seven), and she has been so excited for that day to arrive.

The kids made her pancakes for breakfast, and we hung out, playing at home most of the morning. Because of our summer nights being full of swim meets and VBX rehearsals and soccer tryouts, we had her 'non-party' just before dinner. Close to 50 friends came over to raise an ice cream cone to Ruby as we sang 'Happy Birthday'.

Ruby loved seeing and greeting her guests as they arrived, but one got an especially enthusiastic welcome: her pre-school teacher, Miss Jennifer. Ruby ran across the yard and tackled her with a hug, grabbing her hand and telling her to 'come. sit'. She also attempted to introduce her to several other attendees.

As we've been made aware so many times before, we have an amazing village around us because of Ruby. She is so loved!