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!