Thursday, August 31, 2017

Therapy Update

Speech
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Ruby is rocking and rolling. I keep saying it, but she adds so many new words and blends all of the time. This means articulation suffers as she tries to keep up with her expanding vocabulary, but that's why we do so many hours of speech each week (to correct). She still does speech 2x/week at school as part of her day, and then she does speech once or twice a week with private therapists that focus on different parts of her articulation and blending. Ruby is stringing together thoughts to make toddler-esque sentences now; it is so cool!

PT/Aquatic Therapy
video
This is Ruby's favorite type of therapy. She LOVES the pool, she LOVES Miss Beth, and that means she LOVES Aquatic Therapy! Ruby is jumping all of the place now, which was our main goal when we started. She can jump from standing still, she can jump forward, she can jump off a curb, she can jump twice in a row (sometimes). For an hour each week Ruby and Miss Beth motor around the pool, sometimes with ankle weights, kicking (on her stomach, on her back, seated, on a kick board), maneuvering pool stairs, jumping up and down in different depths and on dry land, doing sit ups, balancing on one leg, balancing in the water on a noodle or Miss Beth's knee....it's an exhausting hour!


OT

video
This is Ruby's biggest struggle right now. We still haven't acquired private Occupational Therapy. She receives it 2x/week at school, and when she stays for the full day at school, the afternoon focuses on handwriting, which hits this area. That being said, when I work with her at home, my assessment is that her skills are still very lacking. Her control of crayons, pencils, etc. is not great at all, and even tracing straight lines is difficult, so the only letters she can at all form on her own are "O" and "X". And those are not on a specific writing line, but wherever on the paper she lands. We are tackling that harder than ever at home right now. We do a lot of thera-putty, cutting, using utensils to pick up objects...that girl works hard!

Friday, August 25, 2017

Boosterthon Fun Run

An annual tradition since Eli started Kindergarten oh-so-many years ago! My kids love Boosterthon. They gather outside with their peers and run 35+ laps around a coned off area, accumulating tally marks on their Boosterthon t-shirts while the music plays and the parents cheer them on.
When Eli was in 5th Grade they started allowing the 4th/5th grade students to have color as part of their run. So in addition to the previously mentioned craziness, now corn starch color powder is thick in the air (and hair).
Maddux was all about the color last year, and this year was the same. Thankfully she thought ahead both years to bring a pair of clear glasses to protect her eyes, but the color she begged the volunteers to pour on her shirt and hair promised to stain for days.
Oh yeah, and if you pour water on yourself, or sweat (as it's August in Georgia), the color powder bonds to your skin/hair/clothes and makes everything even more messy. I'll be coughing up color for weeks.


A fun surprise: Ruby got to participate this year! There is an exceptional student run in the gym just before the 4th/5th grade run, and the Pre-K was invited to join. Ruby LOVED this: the music, the lights, the chaos, the running...it spoke to her for sure!

Tuesday, August 08, 2017

Back to School

Maddux
5th Grade! I am having a hard time processing the fact that Maddux is in her last year of Elementary school. She has a young teacher that we've heard some great things about, and her best friend is in her class. The first few days have gone well; Maddux jumped right in with applying for a 'job' in her classroom and taking on the homework (minimal) assigned so far. After school this year she is participating in three programs: Drama, Cardio Sharp and Math Marvels. Her biggest excitement is surrounding Cotillion, which she'll participate in after New Years.



Eli
Eli started a week later than the girls, just like last year. His schedule this year allows more time with Drew, which was a huge bonus for both of them. Outside of band and PE last year, they haven't had a class together since Kindergarten. This year they are in homeroom and a few other classes together. Eli's locker is still a lower locker, which is a good thing because he can't access most of the upper locker's space (and it's right across the hall from Drew's). Eli's homeroom teacher is the Latin teacher, who he already knew from last year. When he and I walked in for his pre-school conference, he and she immediately connected on something; I think this will be a good year!

Ruby
Ruby started the same day as Maddux this year, since she's at the BIG school. She desperately wants to ride the bus, but I still drive her to and from each day. She is in the same Special Needs Pre-K class she started at the end of last year; same main teacher but a different paraprofessional. There are a few familiar faces in her class, and plenty of new ones.
This year Ruby will stay for the full day (until 2PM) 1/2 the time. (On those days, she takes a short 'rest' and then works more intentionally on handwriting and other things that will help her in Kindergarten. It's more one-on-one too because only a few kids stay the whole day.) She still does so many private therapies that the afternoons would be impossible if we waited until that time to try to fit those in along with the big kids' stuff. So two or three days each week I will pick her up at 11:45 and bring her to speech or aquatic therapy and be done in time to get Maddux off the bus. I am very excited to see this girl thrive in her class!

Monday, July 31, 2017

North Georgia Christian Camp

Camp was a grab bag this summer: Eli signed up to go to NGCC with the kids from FUEL, but had to switch weeks because of his Ohio trip, and he was wait listed for Woodlands, but never got in. Maddux was wait listed for Woodlands and got in at the last minute, and also got to go to NGCC. They love Woodlands a lot, but I think NGCC is their favorite because of the familiarity. They know some of the staff, so much of our church goes there, and they've both been several times.
Maddux had a great time, hanging out with the daughters of our pastor that now work at the camp, swimming as much as possible, and learning all of the songs and dances she could. Eli didn't think he'd know anyone since he wasn't going during the week that his youth group attended, but it turned out that about five other boys from church were in the same boat, so they all ended up bunking together. Eli had SO much fun as well, thoroughly embracing the 'summer camp' spirit this summer.

Tuesday, July 25, 2017

Summer Golf

When we were trying to decide where Eli would attend Middle School, one of his 'pros' for the private school was the fact that they had a golf team that he could participate in as a 6th grader. He has really come to love the sport, so Lehr found a few tournaments he could play in over the summer. The first was in June and Lehr took the day off to join him/caddy for him. They were paired up with a kid who was amazing, both in his talent and in his tendency to compliment and build Eli up as he was way out of his league in this tournament.
In July I was able to join/caddy for Eli in another tournament. We had a crazy day full of pop up storms, delays and intense heat. The golfer we were paired up with was really good as well, but he kept to himself more, which didn't help Eli's morale. Especially on a day where nothing went right for Eli. (Seriously sometimes I had to chuckle because of the extra putts required or sand trap hits made...he couldn't win that day no matter what he did.)
All in all, these tournaments were good investments of time. Mostly we learned that there are some really good young golfers in our area, and that if Eli wants to pursue it, this is a sport that is supported. (But he has to practice a lot more!)

Sunday, July 02, 2017

Eli's Big Trip

Eli received the coolest of invitations this summer: the chance to go to Ohio for a week as a praise band member and junior counselor for a summer camp. Beyond that, he would be traveling with a family from church and a few other kids.

Oh, and by kids I mean teenagers. Full on, 15+, all in high school and college teenagers. (Just as a reminder, Eli is 11.)

There is no real worry here; these teenagers are good kids, kids we've seen grow up and kids Lehr has spent a lot of time with in various capacities at church. But it is a whole week (SEVEN days) where Eli will not be with us, and with no means of communication. The mother traveling with them asked if Eli had a device (he doesn't) because she wanted to warn me that he wouldn't have access to call or text because the service at their camp is spotty at best.
The main job Eli had was to play drums in the worship band with the group of kids that he played with for VBX (most of the same songs too). When he wasn't doing that, he was helping the counselors out. I assume that mainly meant comic relief as the ages of kids attending were 3-5th grade. Hopefully that allowed for the campers to be able to related to Eli better since he is barely older and likely not taller.
Eli had a blast. An absolutely amazing time. He was quick to tell us that his curfew was midnight each night, that the campers had to be in their cabins with their counselors at 10, but he and the band and some others got to stay up later around the campfire and playing basketball and whatnot. I think he could have slept for a week when he returned! So much growing up in such a short time!

Friday, June 30, 2017

Another Year, Another Swim Season

This year was pretty uneventful for Eli and Maddux regarding swim team. They both still love it, but with each of them missing two meets and being on the young end of their respective groups, no records were set and no pressure was felt.
Eli's age group was the biggest change, that I could see. He was with the 11-12 group, but boys in that group are hitting some growth spurts which made height a real factor in the races! Eli is a pretty speedy swimmer, but he did not fare as well this season as the boys' body lengths were so different from his. He took it all in stride though and enjoyed himself.
Ruby LOVES the pool and she had a blast attending a few of the meets. She cheered on everyone, seriously everyone. And when someone she knew was swimming, she gave them personal cheers too.

Wednesday, June 28, 2017

Struggle

Let's be clear. This is not about Ruby. She is amazing. She is a blessing. She is an absolute bright spot. It's me who is not...this is about me and my flaws.

The word of the day is struggle. Sun up to sun down.

Unfortunately that has been my world as of late...the last few weeks, for sure. I am constantly uptight, anxious, out of patience and even angry. Most days I'm amazed that Lehr comes home after work.

I struggle every time I'm reminded of a milestone that Maddux or Eli hit when they were exactly Ruby's age. Especially when Ruby is not only not there, but oh so far from it. I struggle every time we take a step backwards into the black hole of regression. Especially when it's on a skill like potty training that we've been working on for a solid year. I struggle each and every time I come face to face with her delays, which happens pretty much every time I see a child her age or younger completing a task with ease that she struggles with. Like voicing a need or observation with enough articulation that people other than me can understand. Like going anywhere in public without the constant worry that we might have a bathroom accident. Like walking through a parking lot (or store, or park) without having to be picked up and carried. Like playing in the yard with other kids without me having to hover every second because of the constant threat of her running into the street or the creek.

I can't even form the words most days to explain how much I let this stuff get to me. The cocktail of guilt, fear, self-pity and grief is strong. Guilt over what I have done wrong or not done right to help her in any given area. Guilt over having feelings of frustration and even anger that it's not working. Fear that we won't get past this. Self-pity over all the work we've put in without results. Grief that has come to visit way more often than I would like ever since Ruby was born. And then the guilt again because, good gravy...why am I still mourning the child who would follow the same trajectory Maddux and Eli did in their younger lives. Why do I still stack up what our daily life is to what it 'could have been'. What a sick and dangerous comparison game...
This is nothing new...it never is. Because I can't seem to get outside of myself, I am always walking a path that has two sides. I have to chose to actively face the bright side, full of possibilities and hope and joy instead of falling into the dark shadows serving that strong cocktail. Sometimes I just don't have the emotional energy to put on the happy face.

Friday, June 23, 2017

Woodlands

Last year, Maddux and Eli attended a new overnight camp that they both loved: Woodlands. The age breakdown worked so that they could attend the same 'week' (4-nights), and even though they obviously bunked in separate parts of the camp, they had many activities together. They both looked forward to this summer's session again.

Unfortunately, Woodlands is a very popular camp and despite my attempts to sign them up the minute registration opened several months ago, they were both placed on the wait-list.

Last week I called the camp to see where Maddux was on the wait-list. No reason to get our hopes up if she was far down it. However, she was #3! That sounded like good news except for the fact that we were less than one week away from the start of camp. I talked to Maddux about the reality of her getting in, but she was very sure she would get in.

Monday morning came and went without a call. With camp arrival slotted for 3-5, not receiving a call by noon meant a no-go, in my mind. I did my best to keep Maddux busy and distracted all afternoon, but she kept asking me if the camp had called. Even when I told her it was too late for them to call, she still held some hope. My girl found a corner to quietly cry in several times that day, not making a big deal about it in front of her family. This absolutely broke my heart, so of course we took her out to her favorite dinner and even had fro-yo afterwards.

As the girls took their bath before bed, I had an email that I needed to send out ASAP. Thank goodness I was working on the computer at that time because a 7:41PM email came in alerting us to TWO open spots at the camp: first responders got it. I emailed back immediately saying Maddux would be there before 10PM.

We threw clothes and bedding in a bag and Lehr and Maddux pulled out of the garage by 8:15. She was beside herself excited! And for good reason, arriving at bedtime assured that she would be there to start the real fun the next morning and for the following 3 1/2 days. She swam, ran, danced, outdoor gamed, sang, zip lined and cheered her way through that camp. She made lots of friends and has many fun memories.
I am so glad she got to go. Her arrival was so telling of who she was: Lehr asked her as they pulled in if she was nervous about walking into a room without knowing anyone. "Nope!" And Lehr said she sauntered right in and said "Hi, everyone!!" before making her bad and climbing in for the night. That girl...I wish I had her confidence!

Friday, June 16, 2017

VBX-Box

Another great year of VBX! (VBX is our church's VBS. Instead of a daytime Vacation Bible School, our church has held our camp at night; this allows fathers/men to be involved as a way of ministering to the kids attending the camp, and it allows the kids we are trying to reach to get there, as many are in homes alone during the day while parents are at work. We call it VBX because of the X-factor we incorporate each year.)
This was Eli's second year serving: instead of being involved in musical motions and outdoor games, this year he was in the worship band (drums) and assisting group guides for Kindergartners. He had an absolute blast with the music, as you could imagine. He worked with the band for the last few months, learning the songs and perfecting his part in it. The group of kids he played with was all older than him, as usual, which he loved!
This was Maddux's last year as a camper. She had a great time in her group with a close friend from church and a good friend from our neighborhood. We had several talks about her paying attention to what types of jobs she would like to do next year when she is serving for the first time.
Ruby loved her preschool VBX. She did give the teachers there a run for their money a few times. She locked herself in the bathroom (an easy fix because they unlocked it from their side) and pulled a bookshelf down in an attempt to retrieve something from the top (of course she found the ONE bookshelf that wasn't bolted to the wall). When she wasn't aiding the church in troubleshooting their kids' area, she was busy dancing, singing, coloring, rehearsing with the band, and jumping in the inflatables.

Tuesday, May 23, 2017

What's Good for the Goose

Not a new topic. I blog about Ruby's path and the dangerous place of comparisons often. Ruby's journey as a fish and my easily triggered doubts, just to mention a few. But lately I've found myself caught up in comparisons to not only other typical kids, but other kids with the same number of chromosomes as Ruby.
Not such a good place to get tangled up in. Ever.

Because all that does, comparing Ruby to other kids with Down syndrome, is put Ruby (and me) in a hamster wheel of comparison. Oh, they already speak 4-word sentences? Which therapist do they see? I'll go there. Oh, they already run, jump AND swim? Which activities do they do? I'll sign Ruby up for that. And so on and so on.

I need to constantly remind myself to stop, especially in Ruby's community, because our kids are all on such different trajectories. They may all end up in a similar place, but their paths all differ so much! When I forget to hold Ruby up to anyone else's milestones or mastered skills, to other typical kids' achievements, even to the functioning levels of other kids with Down syndrome, that's when I see all of the amazingness that is Ruby. I see her rocking and rolling through speech and gross motor skills. I see her interacting in a meaningful way with peers and adults. But for some reason I have to ruin that by standing her up next to someone else she'll never be and expecting her to perform similarly.

One area I excel at messing this up is inclusion. I want it for Ruby so badly, but sometimes that desire gets in the way of Ruby being where she is supposed to be. Sometimes my desire for inclusion overrides her preparation for inclusion. Oh, the balancing act...

Because sometimes the programs designed for people with Down syndrome or special needs are not necessary for Ruby. And I love when we find a place where she can operate with typical peers in a typical setting with ease. But sometimes those programs and services are very needed. I used to fight to make our life not contain too many of those. But now I'm wondering why...if she can participate and enjoy and thrive, who cares?

Here's the thing I'm learning, albeit slowly: hitting milestones and achieving the next goal is not the only indicator of hard work and early intervention. So much of what is poured into our kids, so much of the time they spend on new concepts and skills, so much of their potential is not visible to anyone outside of the immediate family.

Early intervention is important, vital even. But just because early intervention takes place doesn't mean a guaranteed success or timeline. It doesn't guarantee anything except countless hours of therapies drilling exercises - fine motor, gross motor, oral, etc. So when you see a child that appears to be what you consider 'high functioning', you better believe there has been a boatload of work involved. However, those who might not achieve that label upon first interaction are filling their time with at least as much work. Maybe more because the parents are likely on that hamster wheel I mentioned. They are probably pulling their hair out trying to figure out how they can fit in even more work because they feel they must be failing their child in the area that lacks thriving.

This can be a lonely place. This world of guilt. Guilt over feeling like you are not doing enough as a parent. Not the same guilt you might feel with typical kids when they aren't getting better grades, or they're not finding success as a baseball player (not saying that guilt is not real). This is the guilt you feel because what you perceive to be your shortcomings affects your child's ability to function outside of your home.

A bit heavy, yes?

This is the guilt you feel for not making enough money to buy more equipment or hire more therapists or attend a school that is a better fit. This is the guilt that you feel just for thinking it could - should - be easier than this. For your child and you.
So I'm trying to be intentional about checking in with friends on their kids' successes and struggles, because we are all in this together. And our community is strong. But I'm trying to remind myself that Ruby is not that kid. And Ruby is not this kid. Ruby is Ruby and she does some things now and some things later. Period.

Monday, May 15, 2017

Guest Reader

About a month ago, Maddux earned the privilege to read to another class. Her teacher had the incentive in place, intending for the 4th grader who earned it to read to a lower grade. However, Maddux's first choice was Ruby's (pre-k) class, of course. So she (Maddux) asked Ruby's teacher and got permission. This morning was the day; instead of going to PE, Maddux brought two books from home to read to Ruby and her classmates. When I picked Ruby up, she told me several times, "Maddux. Read." Obviously she loved it. (And Ruby's speech therapist snapped a photo for me!)

Tuesday, May 09, 2017

Jazz Fest

Always my favorite time of year.
This year the kids rejoined us (last year, I gave Lehr the 40th birthday gift of a fest with just the two of us for the first time since they were born), and they couldn't have been happier. We drove in late Thursday night so we could attend all day Friday and Saturday and only have to miss one day of school.
Despite the fact that we arrived at the hotel at midnight, Ruby was up just before 6AM, ready to go. Lehr snuck her out and the two of them went for a mini tour of NOLA. They got some beignets, coffee, visited Breaux Mart...some of the staples. The kids and I were up at 8, ready to get some beignets also. (Yes, Ruby got to visit Morning Call twice that morning!)
After a quick meal, we went to the fairgrounds. We wanted to be there when gates opened at 11AM, which meant getting there by 10 to buy tickets and wait in the gate line. Even with all of that prep, we were still not the first ones on the line at the Acura Stage. We planned to set up camp there for the afternoon Revivalists show.
Because they are awesome, the Overlys joined us again this year. I say awesome because their boys were not with them, so they could have had a kid-free weekend, but they still chose to hang out with us for most of both days.
The kids ate, danced, and people-watched through the day. We stuck pretty close to that stage all day because of the great line-up. The weather was amazing...even a little cool to start with (which is why you'll see sweatshirts in some of our photos).
After our boys performed, we ended the day at another stage with another family we love. We didn't leave until the music was done and we had to shut it down. On the way back to the car, we stopped by many street performances for more music (because NOLA!).

Day two was more of the same. Ruby woke up early again, but not as early. We hopped out of bed quicker so we could get a bigger breakfast. And by bigger, the big kids each got a pancake that was the size of their large plate. Ridiculousness.
After stuffing ourselves, we were at the gates, ready to go before they opened. On this day, we hit almost every stage, taking in so much great music with amazing weather supporting the whole thing.
Ruby got to drum in the kids area, all of them danced in Economy Hall, mango freeze was flowing freely... Eli and Maddux got to see Big Freedia and Snoop Dogg (which Eli referred to as "The Snoop"), so we've officially earned the Parents of the Year award. I'd like to think we made up for it by ending the day with Rockin' Dopsie. Another day of shutting down the fairgrounds at 7PM, only to walk through the street musicians to our car.
While her early morning wake-up call frustrates me, she does wake up because she has to relieve herself (she rarely wakes up wet anymore). And she did an AMAZING job with bathroom habits over the weekend, communicating to us when she had to go and not having any accidents (quite the feat when the port-a-potties you have to use have a line or are far away).