Back to School

Almost seven full months after leaving the routine of school, Ruby was able to return to the classroom this week. Academically, digital learning was fine because at least half of the time we turned the screen off and worked on our own. But the regression I saw in the areas of socialization and Ruby's ability to work independently was concerning to say the least. All of that to say, this last Monday morning couldn't come fast enough!

Honestly, pulling up to the school and having Ruby get herself out of the car - ALL INDEPENDENTLY - is my new most favorite thing. She had a great first day. She was totally excited to get out of my car, greet the principal and walk into school. She wore her mask pretty much the whole day and loved getting to buy lunch (to eat in the classroom). Day two started great: I teared up as I dropped her off in response to her 'big girl' display in the carpool line: she took off her seatbelt, put on her mask, put on her backpack (all independently) and then waited for me to stop before opening the door on her own, hopping out, turning around and saying, "Bye, Mommy. Love you!". She then shut the door and walked towards the school (like every other student!!) Big time proud moment. The rest of the day had a few challenges (basically testing the waters and figuring out how to be in a school/public place again). 

Day three was amazing with GREAT behavior and engagement. Ruby was so proud of herself too, telling me 'I had a happy day!' when I picked her up that afternoon. Day four was more of the same. She came home with new library books, and she was happy to tell me about her good day again. She's so excited to see so many friends and teachers in person!

Ruby's Cheerleader

Ruby has been doing a soccer program on Friday nights for the last month or so. While she enjoys playing soccer in general, her main love of these Friday night sessions has been spending time with a new friend. Blair is a 5th grader who volunteers at the soccer nights, and she connected with Ruby the first time she met her. Since then, when they are both at soccer, they are inseparable. 

Blair is also a junior cheerleader and has taught Ruby some of her cheers. That quickly moved into Blair's mom arranging for Ruby to participate with Blair's cheer squad at the homecoming game; she even lent us an official uniform!

A little backstory on Blair: her mom works in Special Education, which has obviously had an effect on Blair. She connects with people, and has an amazing heart for and patience with everyone. It has been really neat to watch her with Ruby (and without!) over the last month!

Today was the big day: Ruby was beyond excited when we arrived; she could not take her eyes off of Blair (and it was mutual!). Once the girls were introduced, Blair pulled Ruby on the field to get the game started and then they cheered next to each other on the side lines. 

Blair was so amazing, never taking her eyes off Ruby and trying to explain all of the cheers as they came up. (There were a LOT of cheers!) 

She high-fived and encouraged Ruby at every turn, and never left her sight or let her feel alone. She even carried her back after they all ran down the field for an important play.

Just before half-time, Ruby told Blair she was tired and came to sit with me for the last 1-2 minutes of the half. I'm very impressed she lasted that long given all that she was taking in while she was participating.

We are so grateful for Blair and her mom, and everyone who let Ruby participate. These opportunities are ones that seriously just land in our lap sometimes and I have to believe they are intentionally given to us so that we can own our influence (Ruby's influence!). Maybe now one of the girls on the squad, or someone in the stands that saw Ruby will interact differently when they meet someone who looks a little like her, or maybe they'll even feel comfortable enough to say 'hi'. The world needs more Blairs, but I know that she doesn't exist without first knowing some Rubys.

we are gonna be friends

sometimes we get a glimpse into a really cool world. one where ruby has friends around her. friends who just love her. friends who don't need lehr or i to translate or facilitate.

we've not had a lot of this, as ruby is still young. don't get me wrong - we've had friends at church and school and in the neighborhood. friends who put in effort and who are awesome and loving and kind. 

but sometimes a shining friend makes you realize what you didn't know was missing. sometimes you find a friend who shines His light bright into our lives. a friend that doesn't really seem to be trying to be a friend - they just are.

they are getting as much out of the friendship as ruby is.

shine like a star

this is why we research. this is why we prepare for IEP meetings for weeks. this is why we document all work and analyze all assessments. this is why we overthink every scenario trying to figure out 'the best setting'.

we want inclusion, but what if it isn't the best for our child? what if it doesn't work the way we hear about it working with others? here's the truth that i know so far, at this very very VERY early stage in Ruby's life: the work, the bad days, the struggles, the fight...they aren't the whole story. sometimes there is a shining light in the black hole that feels like our efforts to remind you that some good is coming out of it all.

today we saw that shining light: ruby had her first elementary school performance, lasting almost an hour, and she. rocked. it. as in she sang the songs, stayed in her place(s), did the motions, stood still appropriately, all with no teacher or para helping her through, no assistance needed. couldn't have been more proud... lehr got a bunch of video that i condensed down to about 6 minutes. i will watch and rewatch this on the hard days.

(this video is looong, but it's as condensed as i could bear. my personal 'ruby highlights' are at 0:23, 2:37, 3:35, 5:08, 5:28, 6:05)

Father-Daughter Dance

I'm not sure how it happened, but Ruby suddenly became old enough to attend the school's Father-Daughter dance!

She was so excited to get dressed up and take her Daddy on a date. I don't think she had any idea what it was they were going to before they arrived, but she knew it was a big deal. Maddux and I got her dressed in the only fancy dress she has right now (which was Maddux's for the same dance, many years ago), and then I worked on her hair.

Maddux, of course, wanted to share some make-up with her. She told Ruby, "Close your eyes."
We were running a little late because Ruby and Lehr had just come home from a birthday party, but we still managed to grab a few photos of the two of them before they drove away.

Lehr said a friend found Ruby and pulled her onto the dance floor (be still, my heart), and Ruby was all-in the whole time. She found more friends, danced to her favorite songs, took a few photos with Daddy, and lasted about 45 minutes before leaving to come to Maddux's basketball game.

Little Kicker

Well Ruby's soccer debut wasn't quite what we'd hoped or anticipated. But isn't that life, especially with kids? Your expectations get built up over time so much that there is no way they will be met with any degree of overlap?

For months, Ruby has been kicking the soccer ball around the front yard. For the last three weeks, Ruby has been kicking the soccer ball around the field during Maddux's practices and games.

Today she got to have her own soccer time, during an hour long program called "Little Kickers". Three year olds and their parents converged on the field and went through various drills and games with their own soccer ball, culminating in a group photo of all of the 'players'. Ruby was the opposite of participatory.

It shouldn't be hard to understand: Little Kickers has a time slot of death at 3:00PM. Any 3year olds that still nap (as Ruby does) are late nappers, so keeping them up for that slot is hard, and waking them up is the kiss of death. We opted for the latter, leaning on Lehr's magic nap skills (he falls asleep with her in the rocking chair) to get Ruby down right after lunch. We still had to pull her out of her crib 10 minutes before we left, however, and she was NOT happy about that. Groggy and grumpy, we got her team shirt and soccer ball before heading down to the practice area. Immediately it was obvious that Ruby's body was not up to the task. She sat down as much as possible, lead-legs seemingly the culprit. She mostly participated in the stretches, aided by Lehr, but often lay down or sat on the soccer ball.

Not trying to make every post heavy, but this was hard on Mommy's heart. I was so excited to have her join a 'regular' team sport, because at this age I thought we'd be safe to assume she could participate at mostly the same level as her peers. While she was not the only non-participator, you know my radar was on her, especially when I saw kids who were like Eli and Maddux at that age, running by us, kicking with gusto. It was a low-blow in a space that I thought we would be in the clear.

Eli felt this too, which made it hard in a different way. He was all but dragging Ruby by her arms around the field, trying to get her to participate the way we've seen her do so many times before. He was emotional, the way he gets when he is frustrated with his circumstances at home. Mercifully, Ruby gave us a few moments here and there where she really got into it. Eli turned himself around, and we left in a better place.

Here's to next week.

Different Sides of Ruby

With the introduction of a schedule for Ruby where she is away from me, but in an reoccurring environment that includes social and academic components, comes stress. But then, what doesn't stress me out these days, right? My stress is in the not knowing. In order for this to be the type of success I'd like it to be, it's necessary for me to not be present in that classroom. This is Ruby's chance to work on her own, with people other than me or Lehr. Even more than with Eli and Maddux, this is so important to start the expectation of Ruby being able to find success through her own means.

So far, school has been great. Ruby loves it and her teachers report she is doing well. Last week one of her speech therapists asked if she could go to the school for Ruby's session (instead of meeting with Ruby and me at the house). It was one of those moments where I chastised myself: why didn't I think of that? OF COURSE this would be a good idea. Not only could this therapist give me a clearer picture of what Ruby is doing/not doing (because she knows Ruby outside of that classroom, which the teachers don't), but she can also help Ruby find a few strategies in the moment, and she can give the teachers insight into how to best help Ruby and the class be successful.

The report was generally good, but nothing on this road comes without bumps. Ruby is not using her words in the classroom. At all. That is frustrating to me because she is such a chatterbox at home. And because Ruby does not show me any signs of shyness, I just assumed she was talking (in her own way) to the other kids and in general. It makes me sad that they haven't been able to see that very curious, very social, VERY talkative side of Ruby. Another thing our therapist addressed is Ruby not initiating play with others on the playground...in fact, it sounds like she just plays by herself most of the time. That is a really tough one for me, since Ruby is so social anytime I see her with other kids (not at school). The good news is our therapist helped facilitate some interactions on the playground that went very well and hopefully helped Ruby realize she has to talk to the other kids (like she does to me and her siblings when she's playing with us at home).

The different sides of Ruby...I had no idea she had this one that is showing up at school! It's so crazy to me to think of this playground side of Ruby, especially when a day doesn't go by that Ruby isn't continually tugging at my hand to 'ccccc-ooommmm' with her to play with the doll house or her kitchen (initiating play). A day doesn't go by that she doesn't play with me or Maddux using as many conversational imitations as possible (the 'talk' is incessant). We are very hopeful that a few more facilitated playground visits will find Ruby and her classmates initiating play together during these times, so that they can see the Ruby that we see.

IEP

We had our first IEP (Individualized Education Plan) for Ruby today. It's been a season leading up to this, full of evaluations by the county, transfer of services from the county through Babies Can't Wait to the school system, etc. Today's meeting was planned to do two things: determine eligibility and make a plan (an IEP) for the service(s) for which she is eligible to receive.

When Ruby had her evaluation about a month ago, I knew she did well. The evaluation occurred at 9AM, which is a great time for most kids because they are well rested and ready to go, and it took place in a new environment with new toys. Pretty much the perfect scenario to get the best possible results from my girl. So when I got her report last week, it didn't shock me to see high marks on there. I didn't expect them to be as high as they were, but I also don't really know anything about this process since we are just starting out.

The meeting today started out with determining eligibility. There are several types of services available to kids: special needs preschool, individual or group speech therapy, and community based support were the three we were anticipating. I thought we might have to negotiate how much special needs preschool Ruby would attend next year given our push for her to be involved in her typical preschool classroom three days/week. However, as they interpreted her scores for us, it became evident that she scored *too* high for most of the services. She did not qualify for PT, as we expected. She did not qualify for OT, which we knew was a possibility. (I asked several times if she would be able to qualify next year, even if she didn't this year and the answer was 'yes'. I fully expect that her delay will be more evident next year.) The only area she qualified for was speech, and that is only for small group speech therapy, not the full-on preschool. (That also means she cannot receive the community based support, which allows someone to come to her typical preschool and observe/help/support from time to time.)

Here's the thing: Ruby's scores fell in a small little gray area between the 'norm' and qualifying. That sounds like great news because we didn't know she was capable of performing at that level. However, if what you want is to receive those services, this is bad news. (Especially since a blood test on Ruby should be enough to qualify her based on her extra chromosome. Her delays will not be remedied with a little therapy or time to 'catch up'.) Her scores only qualify her for 1 hour of speech each week. Sounds crazy to anyone walking this road with us.

I am choosing joy in this moment. I am choosing to see this as a reflection of Ruby's potential. I am choosing to see this as the result of her hours and hours of hard work. I am choosing to see this as a byproduct of Ruby's motivation and desire to learn.

I went into this meeting prepared to fight for my girl. To fight for inclusion. To fight for her to be able to maintain as much exposure to typical peers as possible. Instead I got to hold on to my fight for another day. Should we see that she's not benefiting from the current plan (which doesn't start until the fall), we will call a meeting to reassess. Should we see that she needs more (OT, behavioral) therapy and we think the school can be a viable resource, we will call a meeting to reassess. Should we see that this particular speech therapy is really helping and she needs MORE, we will call a meeting to reassess. It just didn't seem to be the right move to fight hard for more services (that we really weren't sure about anyway) before we'd had a chance to test drive them to see if they were worth fighting for.

The Carnival

Ruby's school had a mini-carnival today. When the classes attended their 'movement' session, the gymnasium was set up with different stations for them to play with. There was a small bouncy house with a slide, a plastic slide, a big bowling set, bubble wrap on the ground, some hoops and small footballs, some velcro balls and targets, soccer balls and a goal, basketballs and a hoop, a balance beam or two, and maybe a few other things that Ruby didn't make her way to that I'm forgetting.

Parents were invited, so of course I was there! Three other parents and I were standing in the gym, just to the side of the door when the class arrived. Once the door opened, Ruby was the first one in, eyes locked on the bouncy house and yelling in excitement as she walked as fast as possible towards it. She didn't even slow down once she saw that I was there.

I was so overjoyed to get to spend an hour there, hanging out with her class and seeing her navigate part of her day. Ruby did need help on the bouncy house ladder, but other than that, she navigated everything to the extent she wanted to participate (kicking balls, slides, throwing balls, etc.) I forgot a few times that I should be watching for specific deficits, because she wasn't really showing them to me. She shared with a girl from her class (velcro balls). Then a few minutes later when Ruby walked away, that girl ran after her, trying to share back. My favorite thing was seeing her each time we saw someone else do something (slide down or throw a ball): Ruby clapped for them and said, "Yay!". Her smile was "on" the whole time...she was in hyper drive for stimulation.

So funny that the teachers had prepared us to 'slip out the back' while they applied stamps to the kids' hands so that the kids wouldn't be upset that we were leaving them. Ruby barely noticed I was there, let alone got sad when I 'snuck out'. I think she is more sad when she sees me because it means she has to leave school!

First Day

Ruby started school this morning.

Cannot tell you how cool it is to see that sentence in print!

Starting late last fall I researched and read up on local preschool programs that might take Ruby once she turned two years old. The one I landed on is inexperienced in children with T21, but they were/are very open to including her in their regular classroom. I met with the director last winter, then Ruby and I met with her early in the spring before signing on for a 2 day/week program this fall.

Two weeks ago Ruby and I met with her teachers to answer any questions and let them meet Ruby, then last week we attended the formal Meet-n-Greet with the other kids. Last week's official first day was a no-go for Ruby due to pre-op appointments. But today, oh today, she went into a room with nine other kids (all typical as far as I know) and rocked it. I helped her hang up her bag outside of the classroom, right after we put her cup and diaper in the appropriate bins. Then she walked into the room all by herself (teacher preferred method). It was all I could do to not stay and peek in all morning, but I knew she would be fine. Three short hours later I came back and walked down the hall to find one of the teachers at the door, releasing kids as their parents approached. Before I knew what was happening, Ruby walked right over to me. The teacher said she did great.

Could not be more proud. Could not be more excited. Could not be more hopeful for what this means for Ruby and inclusion in general.