Thursday, November 29, 2018

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.

Monday, November 12, 2018

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!

Wednesday, October 31, 2018

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!).

Tuesday, October 09, 2018

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!

Friday, October 05, 2018

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.

Monday, September 03, 2018

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.

Saturday, September 01, 2018

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.


Thursday, August 30, 2018

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.

Monday, August 06, 2018

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.

Sunday, August 05, 2018

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 have 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.