Thursday, November 16, 2017

IEP

As we eluded to a month or so ago, Ruby was due for her annual IEP this month. This afternoon we sat down with Ruby's 'team' at school to discuss the goals currently on her IEP, modify or set new ones, and start the discussion about placement for next year. With Ruby having a summer birthday, she will either be older or younger than her peers, depending on when we start her in Kindergarten. This was a tough decision for us when we faced it with Eli...it is proving to be equally as tough with Ruby.

First, let's talk about the goals. Ruby mastered all of the social, behavioral, speech and OT goals set for her at the end of last year (we did an IEP amend before school let out). We put some new ones in place, mainly to get her through the end of this school year, though it has been obvious to me that her teachers are not holding anything back from Ruby. When she has shown mastery of a goal at school, they have moved on to the next thing for her without hesitation.

When the team talks about Ruby, they can't keep the smiles off of their faces; it's obvious how much they love working with her. And while they think she is ready to move on from their classroom, they will definitely miss her. (And she will miss them!) The talk about next year covered everything from Ruby's growth in the short time she's been in the Special Needs Pre-K to her ability to follow the classroom routines and transitions well. She is very social, and they don't see any issues with her in regards to typical peers. I asked many questions about what Kindergarten would look like for her (number of pull-outs, percent of time with typical peers, etc.); while answering these questions basically requires a crystal ball, Ruby's team still gave me solid responses.

And then, when I launched into my requests for things that would help better prepare her for a fall Kindergarten start, the meeting got even better. I asked for a few resources for things that Ruby would be expected to learn while in Kindergarten, and they gave them willingly. I asked for opportunities for Ruby to visit with a Kindergarten class before the end of the year to help get her acquainted with a bigger class size. Not only did they say they would make that happen, but they said they would try to have it start right after Christmas. (Hopefully circle time and some specials.) And here I was thinking that would be a difficult sell for a visit a few times before the end of the school year.

This is the part where I cheer and dance and rejoice because I know this IEP will likely go down as the best one we will ever have. This just isn't how it normally works.

At the end of the day, we are having to weigh our options. We have three: Kindergarten, repeat Special Needs Pre-K, or private Pre-K/Young 5's. I've visited a few private programs in the last few weeks, to see if those options really are options. One I found is great, amazing even, but comes with a steep price tag and a far commute. The other is affordable but carries no extras, and a lot of uncertainties. Now that we've seen how much Ruby can thrive in the right environment, I'm so scared of the missed opportunities we could face putting her in the 'not-right' place. Especially for a whole year. Especially when the whole reason of putting her there instead of Kindergarten is to see more growth.

As much as we love her SNPK, repeating means just that: repeating the same curriculum. And Ruby has mastered it - seriously mastered it. That doesn't mean she's up to speed with every other four-year-old out there, but the colors, letters, numbers, months, seasons, etc. that they teach in her class is all information Ruby has demonstrated comprehension of. So that means she could be very bored next year. Also, she would be 5 and her classmates would be 3 and 4. We know that so much of what Ruby has learned at Sope Creek so far has come from her classroom peers, but if they are younger, there is a chance she isn't learning from them anymore. Also, we've been so fortunate that Ruby has not picked up any undesirable behaviors at school. My girl is a big sponge that observes everyone very closely and follows their lead. If we were to roll the dice with another year, it's quite possible she could have a behavior model that ends up creating behaviors that we have to work hard to correct.

So that leaves us with Kindergarten. So many pros and cons for each of these choices, but especially this one. My girl would love it. Love. it. She would have some great models for speech, lots of new information for her to learn, and I have no doubt that the kids would rally around her and help her when needed. But we know about the delays. And the big question is would those delays put her in a position where she is away from typical peers more than she is with them. I would hope not, but that isn't an question anyone can answer right now.
So we wait and we pray and we pray some more.

Wednesday, November 15, 2017

Update

Ruby's speech has come oh-so far in the last six months. Even the last three months. That girl is talking SO much and saying up to 4 words in a 'sentence', spontaneously (as in, not repeating after me) very consistently at home. As with any language explosion, her articulation has suffered because she is in such a rush to say all of the new things she can say that her mouth can't quite catch up. Especially because she has to work so hard to correctly make those sounds anyway.

One of the areas Ruby has always excelled with speech has been her receptive language. Basically that means what she's able to understand as it is spoken to her. Now that she's giving us so much more in the expressive speech world (what she actually says), we can see all that she's been learning and holding on to.

Prime example: she knows her name and how to spell it and loves to tell you. This is something she's been doing for a little while, but this video from the other night just brings it home. Check out this chatterbox! (Gobble, Gobble)
So many times we see our kids work really hard on something they are struggling with. With my typical kids, I have definitely seen them struggle and sometimes not succeed, whether it's with a sport or an academic milestone. But most of the time, they got to their goal or the goal was not one that was required for every day life (like a new sport). With Ruby and her peers, we see our kids work hard - SO hard - day in and day out. On everything. Not many things arise in their day that they don't have to work on, from social skills to physically maneuvering their world to speaking. And what I didn't realize before I had Ruby was that many times this hard work goes 'unrewarded'. That is, they don't always see the fruits of their labor. So many times Ruby will work on a skill for months on end before mastering it. Or, we will work on it for a solid year and still not have mastered it. This video has been a good reminder to me to reward the hard work even when the result is not video-worthy.

Wednesday, November 01, 2017

She is a Gem

Totally amazed by the oh-so strong sight word game Ruby is bringing these days.

Last week Ruby and I started working on sight words again. We did it pretty solidly through the spring and summer and we had about a dozen words that she was fairly consistent on knowing. As often happens with us, we got sidetracked with other therapy tools and practices and we haven't picked up the cards since August. Rather than go back to the original set, I pulled out some new cards/words (actually old - we used them for speech while we were in the hospital). After only two times of working on them, Ruby had a really good success rate (check out the video).


So fast-forward to yesterday when I was making Ruby's lunch. She was being a little impatient so I told her to get her chair and sit at the table to wait. She obeyed (which surprised me, by the way, since she doesn't tend to do that these days) and then fished around in the basket I keep on the table with therapy stuff. She pulled out the old cards (from spring/summer) and proceeded to correctly tell me half of them.

WHAAAAT?

We haven't touched those cards in over two months. One of the biggest struggles I have in working with Ruby on these things is how hard it seems for things to 'stick' with her unless we drill it daily. Literally daily. She very much proved me wrong...

Wednesday, October 25, 2017

Seesaw

Joshua 1:9 Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

I asked to observe Ruby's class this week, in preparation for her upcoming IEP meeting to determine our plans for next year. Can I just say that I love the class she is in. I love her teachers. I love her therapists. I love her peers. I love that Ruby loves school. I love that she knows what to do, where to go, and what is expected. I love the independence they have helped her develop. I love that she is in a place that includes and invites her, a safe place where she can be who she is. Everything about that class makes me so so happy, every day. (Even when she doesn't have a great day.)
But it is a bubble. A very awesome but modified and carefully thought out and aided bubble. And I choose to not dwell on that part most days, but in light of decisions that have to be made for next year, I do need to intentionally remember that reality.

So I am currently on a seesaw, alternating between being amazed by and thrilled with the significant progress she's made in areas of independence and speech and fine motor skills, and also painfully aware that it's still not 'enough' to put her on a level playing field with her typical peers. (Peers that would make up the vast majority, if not the entirety, of her Kindergarten class next year.)

Do we send Ruby to Kindergarten next year? She has come so far in less than a year of Special Needs Pre-K, and she still has 3/4 of a year left. She knows her school and is able to walk the halls and play on the playground. She loves the routines that are typical for a classroom: put away your lunch, hang your backpack, pick a classroom job, go to your seat and start working.

Or do we hold her back? She is on the younger end of things. She does struggle with impulse control. While she loves school, she does sometimes have a day where 'no' is the answer of choice. She does struggle to wait her turn in group settings.

If we hold her back and she stays in her class, she will not be exposed to any new material. And while her speech and writing cannot demonstrate her comprehension, her receptive understanding of all things necessary (numbers, colors, words, objects, family members, calendars, etc.) is up to speed. So will she be bored (re: have behavioral issues) if we hold her back? Or do we roll the dice and try a typical Preschool class instead, to give slightly different content? That's a scary one for me right now, because of how much I've seen her thrive in SNPK over her typical experience.

Up and down. Every day. The ups are really great though, and for now they are very much outweighing the downs. But, with the IEP looming, we do have to stay on that seesaw and take the 'bad' with the good.

Tuesday, October 24, 2017

Deck Concert Series

After ten years of holding our breath every time someone leans on our deck railing, or even steps foot on it, we replaced the whole thing. The project finished last week and we could not be happier. In addition to the awesome stadium stairs, it's flat, open surface lends itself to shows, concerts, performance. This works well since we are a house filled with drama and noise.

Eli has been working on guitar skills for several months now, and this week he will perform in his school's Talent/Variety Show. In preparation for that, he gave us our first Concert on the Deck tonight. 
Ruby loves everything Eli and Maddux do, and that is true for music too. Last night she kept walking over to his pedal board and trying to step on the pedals like she sees him do. We reminded her over and over to look with her 'eyes, not hands'. At one point she walked to the pedal board again, looked at me and said, "No touch. Eyes. No hands?" When I nodded in agreement, she then pivoted at the waist and got her eyes right up next to the board to 'look with her eyes, not her hands.' (You can see some of this at the very beginning of the video.)
 
Eli gave us a few listens to his Jimi Hendrix version of The Star-Spangled Banner before he exited the stage. The evening ended with Eli giving a free lesson to one of his shorter groupies.

Monday, October 23, 2017

Therapy Update

I have been bad, bad, bad about blogging since the beginning of school. What can I say...busy times!

Speech
This girl.
She is such a chatter box! Ruby's speech continues to grow, with her spontaneous speech improving daily. We are in a season where I get comments from friends like "I can't believe how much she's talking!" or "She's talking so much." And these are people who see her a few times a month at least! I recently started going back through a large stack of sight word flash cards with Ruby. While in the hospital, we would go through them daily. My focus then was not for her to read them as much as mimic me saying them. At best, there were 10-12 that she could say (repeating after me) with enough intelligibility for someone else to know what she was saying. When we picked those cards up last week, I realized that she repeats every one after me, and only a few are hard to recognize. (This stack is at least 50-cards deep.)
This made me realize how far we've come in the last two years. Not only is she speaking more, but she is doing so spontaneously (without being directly by me, or without repeating after me) and she is able to repeat anything I give her. When you are in the early stages of speech therapy, you are often measuring success by how many words your child has. For a long time that was a single digit number: the total words Ruby could say, repeated or spontaneous. If I think about it now, Ruby's word measure is infinite. If I pull out 100 cards and say the word first, she will repeat 100 of those words back to me.

This. Is. Amazing. And oh-so encouraging.

PT/Aquatic Therapy
Still Ruby's favorite hour of the week! We missed Aquatic Therapy for a month recently due to school breaks and scheduling issues, but when we returned, Ruby's therapist was excited and surprised to see how much stronger she had gotten in that month (instead of losing skills/muscle). This speaks loudly to the benefits of being in a school environment that allows for free-time on the playground for recess. My girl runs (and runs and runs) and climbs the whole time she is outside, and it is really paying off!  
Ruby can now jump with two feet, getting actual air under her feet. And she likes to jump all of the time. She has jumped in succession (two or more times in a row), but that skill is still emerging. She has jumped over obstacles (pool noodle height or smaller), but that still is still emerging too.

OT
Just this week I am starting to see some improvements in this area. Hallelujah!! Ruby just started to show interest/ability in coloring inside of the lines and is working on that skill. FINALLY this week she started tracing some lines/shapes/letters for me with success. She has been able to trace a line going straight down for a while, and I know she gives them a little more accuracy at school, but at home we have been struggling with this one. (One afternoon she even traced an "R" with crazy accuracy!) And yesterday when we were coloring in the afternoon, she kept readjusting her crayon to hold it correctly (unprompted). This is crazy cool.

And her scissor skills are improving too. Straight lines through the entire paper? Yes, please!

Saturday, October 21, 2017

Winter Swim

Eli decided to join the swim team at his middle school this year. For a few weeks he had cross country runs 2 or 3 days a week and swim 2 days a week (he couldn't sleep enough!) The season ramped up his stamina immediately; the first practice found him swimming at least 1700m, which is well over the amount he would complete in any given summer swim practice. But he was happy to report this week that he could already tell that he was improving because it wasn't as hard as that first week.

Today he had his first swim meet, a home practice meet. It came on the heels of an all-night lock-in at the school, so his times may not have been his best, but he completed all four events and only had one goggle mishap: success! (It's hard to see, but he's in the middle-ish lane. He finished middle of the pack.)


Thursday, August 31, 2017

Therapy Update

Speech
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
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
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 22, 2017

Eli's Birthday

Eli turned 12 today. In other news, I haven't aged at all.

As he has done several times now, Eli opted for a soccer party. This is our favorite type of party because it is literally just everyone running around having a good time: no lunch, no balloons, no goodie bags, no hired entertainment. And we encourage our kids to raise funds/resources for others if they have a party (more than 3 people). Without any prompting, Eli chose Songs for Kids (which we obviously love and benefited from in Ruby's hospital time).

This year was a great crowd, as it always is. Mostly repeat offenders, with a new face here and there. I love that the kids ages (except Ruby) spanned from 10-16; that's just cool.

Oh, and I brought enough water this year; in every other year I would bring more than I had previously, but still not enough to deal with the hydration needs of 20-ish kids and adults running around in a humid hot box. This year I nailed it. #winning
Oh yeah, and the kids had a great time too.

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.

Friday, June 09, 2017

Ruby is 4!

And she knows it! We started working with her a few weeks ago to see if she could say 'four' and use her fingers to show it, anticipating the transition from answering '3' to '4' might take some time. Nope! This girl never once answered incorrectly :)
As is typical for our house these days, we were not able to pull off a full-on birthday party for Ruby, but we did invite some friends from the neighborhood over to enjoy a birthday ice cream cone. (You know how Ruby loves ice cream!) She had a great time playing and eating with her friends. 
As a family we celebrated with a special breakfast and water table play that morning. The big kids had a swim meet that night, so we took advantage of that to put a candle in her pancake breakfast.

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.