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).

Monday, May 08, 2017

End of Year IEP Meeting

We had another IEP this afternoon. I called this one. We are not 'due' for another IEP until December (the goals should last a year and we had one to challenge Ruby's initial denial into the program last December), but with the school year ending, prep for another begins. I wanted to establish if Ruby would be returning to special needs pre-K, and in what capactiy, along with goal updates.

Prior to these meetings, there is always a lot of prep for Lehr and I. Re-reading her current assessments and reports, reading up on kids similar to Ruby in different settings, discussing what is working and what isn't, talking with other families to see how they are navigating these waters, praying, praying, praying... But even with all of that prep, this time we did not go in with a clear plan.
 Honestly, I felt very conflicted about what I hoped the outcome would be. We have pushed for as much inclusion as possible all along which would mean us requesting Ruby attend the typical preschool (Mt. Zion) 3 days/week, with a facilitator a few hours each week in addition to attending the special needs pre-K (Sope Creek) the other two days. However, she has done so well at Sope Creek in just four months. She is potty trained and has been with rare accidents since the first month, she has made friends that she has conversations with every day, and she is talking talking talking so much! Those great things (which didn't happen in the typical preschool) are so great that they make it hard to consider taking even a little bit of it away. She may still thrive that way with only 2 days/week next year, but what if she doesn't? And what if her typical environment is one that causes frustration again?
So with these questions (and many more) on our minds, we went into the IEP with a very open mind, ready to have a conversation with her teachers and therapists. We all agreed that Ruby has made a lot of progress in a short time, in all areas. (The teachers are so proud of how well Ruby navigates the classroom and fulfills her responsibilities with no prompting.) And we all agreed that next year she should continue that progress at Sope Creek. She will be eligible for the afternoon (full day) program as well. That program allows for smaller numbers (more one-on-one), and more intensive work to prepare her for kindergarten (handwriting, number work, etc.). However, if she stays until 2PM each day, it will mean her 2-4 therapies outside of school will have to take place after the big kids get home, making our afternoons even crazier than they already are. So Ruby will attend full day, but only on days she doesn't have therapy. (These last few months, it's worked very well for me to pick her up before noon and get her therapies done before returning home to receive Maddux from the bus.)

So that's the plan for next year and we are happy with it. Ruby's summer birthday means she could start kindergarten after next year, or after an additional year (starting right after her 5th or 6th birthday). Should we wait until the second year, her final year of pre-K might be a typical/special needs pre-K mix.
Here's what made me smile at the meeting. The team, Ruby's team, a speech therapist, an occupational therapist and her main teacher, gave lots of feedback with lots of genuine smiles. They told little stories and gave examples of her in the classroom or therapy that obviously brought them joy. They love my girl. They see my girl. They are proud of my girl. They get how much she loves to learn. They see how much she wants to learn and work.

Tuesday, May 02, 2017

Alice In Wonderland

Maddux signed up for Drama Club this spring, meeting with about 20 other kids in her school once/week. She was interested in joining in the fall, but schedules conflicted, so she had to wait until January. The culmination of the season was to present a play to the parents and the older grades at school. The play chosen was Alice In Wonderland, which they started working on immediately.
After a few weeks of meeting and 'reading', parts were chosen. Maddux ended up being one of the story tellers: "red", while the others were rainbow colors as well. It was difficult to get her to practice her lines with me in the beginning, but she was very interested in pulling her costume together!
When the big night arrived, Maddux asked me to make some special treats for the reception after the play. She also asked me to come early to take photos of the entire cast. So many creative costumes and talented kids! There were just over half a dozen Alices throughout the performance and many of them have a future on the stage!
Maddux did a great job, delivering her lines clearly and timely. She has a hard time being part of the performance (rather than a spectator), but with so much to see during the play, who can blame her!

Saturday, April 29, 2017

First Dance

Eli's school held their annual middle school dance last night. I wanted to volunteer as photographer, but at that time, Eli had not yet brought the dance up, so I wasn't sure if it was even on his radar to attend. So I asked him, and he seemed fairly interested. I suggested that he might check with some of his friends to see if they were interested as well (since he was telling me that no one had talked about it). The week before the dance he said he was going, so I signed up as well. He had to convince his best friend, Drew, but they both got dressed up very willingly.
Eli chose red pants and a cool plaid shirt. He wore a white belt and skater shoes with it, and on the way out, he grabbed a hat. Not sure where he gets his style, but I like it. A lot!

The night of the dance, I drove the boys since I was going to be at the dance as well. I took them out for a burger first, and we ran into many other 6th grade boys at the restaurant (all dressed up). I think this helped get the boys a little more comfortable with the whole thing (even though they both spilled food on their shirts). By the time we arrived at the school, they were chatty and excited.
The whole dance was very fun, very innocent, everything a middle school dance should be. So many of the kids danced the whole time, taking occasional breaks to snack, go to the photo booth, or play some random games around the room (corn hole, connect 4, etc.) Boys and girls danced, but not really together, but it was all ok.
As I drove the boys home, they both couldn't stop talking about how much fun it was. I think their first school dance experience could be considered a success!

Friday, April 28, 2017

Grandma & Grandpa Visit

We wanted to take the big kids to NYC without Ruby (nothing personal!), so we flew Grandma and Grandpa here to hold down the fort while we were gone. That turned into an extended stay to hang with the big kids over Spring Break, fortunately. Eli got to take Grandpa golfing once or twice, hit balls once or twice, and play in his yard course countless times. (It was literally the ONLY think on his mind all week, and he reminded us often.) Maddux and Ruby and Grandma had lots of fun coloring, playing outside, going to parks...we did it all. Weather (severe weather!) kept us inside a few days, but we still had our fair share of outdoor fun.
Ruby loved Grandma and Grandpa being here too. As much as she always asks for "Gam-pa!" when we face time them, she gravitated towards Grandma Cathie plenty. In fact, when Grandpa slept in her room one night, she woke up in the morning and said, "Gramma?". When she saw it was him, he tells us that she put her head back down and went to sleep, maybe disappointed.
Another Ruby story: she dropped the "Grandma" title. She started the week saying "Gramma Caffee", but after a few days that was shortened to "Caffee", which she would call from anywhere in the house to find her favorite playmate. She had no time for Lehr or I (or even Maddux) while they were here; she was very focused on commanding them to 'come. sit. (eat. play. whatever)' the entire visit.