Still in School

We are still in school, three weeks later, which is GREAT news of course. And, as expected by parents of school aged children everywhere, there is a (re) learning curve when it comes to 'how to be' at school.

Ruby is really enjoying school, her teachers, and the friends that are in-person with her. But she is having to be reminded how to line up, how to find and use the proper restroom, how to maintain energy/stamina all day. And also, she is having to learn how to wear a mask all ding-dang day. We worked on mask wearing for at least a month before school returned, and Ruby had built up to 2+ hours (no breaks) before we sent her to school. But, as it is for students of all ages everywhere, wearing a mask in school from 7AM-2PM is hard, especially when you don't really understand why. 

Despite all of that, Ruby's teachers have been amazing with working with her to do all of the things they know she can do. She has about 1/2 of her class in-person with her (the rest are still working from home), and she is still rocking the carpool line in the morning.

For now I think that's all I can ask for!

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!

A Day in Another Kind of Life

I joked on social media the other day that I felt like we were in some sort of human behavior experiment. Like there is a mad psychologist somewhere watching us on a camera and saying, "Interesting, interesting..... But let's see what happens when we try this."

Sometimes I think I'm being too silent and other times I feel like I'm constantly complaining. I'm not sure which side of that I am landing on with this particular issue, but the more I see our virtual school situation (in our county specifically) labeled as a 'success' in the news and media, the more I realize that, individually, we are so hidden from sight right now that we have to speak up. 

So here goes: This model is not sustainable for our kids. Our teachers are amazing superheroes that pivot and modify and find workarounds to last minute changes on a daily basis even without a pandemic. And they have continued those ninja-like skills during this at-home learning black hole. But it's not enough to make up for the constant upstream swimming necessary for so many learners (especially those who are younger and/or have an IEP). And if we thought teacher burnout was a problem before, this is just expediting and reinforcing it, as they are now often bearing the brunt of student and parent frustration.

In the grand scheme of things though, what's the big deal? An at-home school option sounds like a great alternative to keep us all 'safe'. After all, my (typical, older) child is doing just fine with online learning! (I've come to realize that when the word 'safe' is used these days in regards to school, it actually means 'covid-free'. I disagree with the notion that staying out of schools is 'safe', but that would make this post even longer.) 

Halfway through this second week I decided to start taking 'minutes' throughout our day, just to see if what I was experiencing was really as bad as it felt.

*This was a unique day in the specifics, but not in the overall theme and amount of chaos. The most unique thing about this day was that I finally gave Ruby occasional breaks from the screen. Up until today, we have just powered through.

School hours: 8AM-11:55AM

• 7:56-8:02 - We tried to log in to CTLS on the school tablet, but it after several minutes of waiting to join the class, I checked my email on my personal laptop to find an email from the teacher with a zoom code to use in place of CTLS. Joined class zoom 2 minutes late.
• 8:02-8:16 - Morning meeting (Towards the end it was difficult to keep Ruby in front of the screen as her attentiveness faded as new kids joined and interrupted, also due to long pauses waiting for kids being called on to un-mute themselves and speak.)
• 8:16-8:28 - Class review of rules for digital learning. Ruby was checked out (head down, making sounds with her mouth).
• 8:29-8:31 - Ruby had OT services at 8:30, but CTLS was still not working, so we had to switch to my laptop to retrieve an email from the OT with a link for the zoom. Since it was a link, we had to stay on my laptop for this segment (which continually receives audible notifications not easily turned off at the last minute, which is distracting for Ruby).
• 8:31-8:55 - OT service (working on handwriting). Ruby and the therapist played a game involving generating and writing words starting with a specific letter. I provided physical support for Ruby's writing. 
• 8:55-9:10 - Ruby was resisting rejoining another zoom with her class, so we took a bathroom break and I tried to encourage her.
• 9:10-9:15 - We logged in (back on CTLS now, back on the school provided tablet) while the class was taking an on-screen brain break. Ruby joined in the dancing once I wrangled her in front of the screen.
• 9:15-9:25 - The teacher finished the brain break and told the class that we would pick up with our lesson and start writing based on the book she'd read them while Ruby was in OT. Ruby melted to the ground and said, "no writing!" I had to physically place her in her chair and calm her down, reminding her that I'd help her and that we'd read the book together later. She physically complies, but is lost as she has no context for the conversation/instruction for the assignment as it revolves around the book. I modify the assignment for her and she begins to work.
• 9:30-9:50 - The screen and the constant shifting from teacher to student audio frustrates Ruby to the point of throwing her pencil and saying, "No zoom!" I place a blocker in front of the camera and comfort her as she burst into tears. I remind her that when things are hard, we try harder. (This is her mantra and it helps.) We opt to turn the volume down, keep the screen blocker up and finish our assignment on our own. 
• 9:55-10:20 - We removed the blocker as the class started a math game. Ruby did not want to join in, so it required constant encouragement for her to stay in front of the camera. While she enjoyed the game, the student screen and teacher screen change up made it hard to maintain focus. After 25 minutes, she was starting to flop out of her chair again. I put the screen blocker up and let her sit and independently read for 15 minutes.
• 10:35-10:45 - She resisted returning to the desk to do the math worksheet associated with the lesson (the one we missed while she was reading). This took a lot of coaxing and encouraging.
• 10:45-10:55 - We worked on her math worksheet independently. The class logged off to go to PE (through CTLS, on the tablet).
• 10:58-11:07 - Ruby and I 'waited' in the CTLS waiting room (on the tablet AND my laptop) for almost 10 minutes, checking email the whole time for another link, as we were unable to join/never approved to join. 
• 11:07-11:25 - Ruby and I made up our own PE class.
• 11:25-11:40 - We rejoined her class on CTLS (tablet) and a few kids mentioned not being able to join as well. The teacher started the video for phonics but had to pause several times as they could see some students not participating. (Ruby was losing focus quickly with the pauses.)
• 11:40-11:47 - The teachers' screens dropped out of the zoom. We logged out and back in, changed devices, but each time we rejoined all we saw were the other students trying to do the same. 
• 11:47 - We logged out and did our own phonics lesson to end our day.

Guys, this is happening EVERY day. I know the start of a new school year takes some ramping up and has hiccups, but when those things happen in person, kids have peers to get comfort from and watch for coping strategies. And they have teachers, amazing teachers, for hugs and words of encouragement. Why aren't hugs from mom enough right now? Why can't they just look to siblings or parents for comfort when times are tough? Because they need independence and reassurance that it's not just mom and dad that can help them! Because they need to learn from people other than those they live with (and they do learn differently from other people too, which is necessary)!

And before you say it, I know...Ruby's face-to-face school days are not often easy and perfect. BUT the physical transitions throughout the day, the peer modeling, the multi-sensory approach to instruction, the supports she has through her IEP...these are just a few of the ways that help her stay engaged have a higher success and participation rate.

We currently find ourselves stuck between 'we can't do this anymore' and 'we don't have a choice'. We could pull Ruby out of school and officially home school her, but that decision comes with risks for Ruby. From other parents who have gone before me I know that taking a break to home school takes away the opportunity for data collection to support her ability to succeed in a typical classroom. In other words, if we take Ruby out of the school system, when we return there is a (good?) chance she will not be able to return to the inclusive environment we've worked so hard to achieve.

So here we are.

Where's The Light?

I've not been blogging much at all during this time, which I've come to realize is not good because it's usually how I process the things that are rattling around in my head and in my heart. But having all of the people around me at all of the time makes for no 'free time' to write, even during this unprecedented season of open calendars. And it's not just Ruby occupying my head, heart and physical space all day...the big kids are too. They are obviously capable of entertaining themselves at this age, but that's a skill they developed and practiced during 'normal' life.

And we are currently far from that normal.

Because at this stage of the game, finding something to look forward to, something to get excited about is getting harder with every additional piece of news that resuming life (almost exclusively surrounding kids and schools) is being held off even longer. And the realization that I'm struggling with this adds more 'stress' to my heart because I probably shouldn't be feeling this way. Our family is SO blessed to not have the added burden of unemployment during this time, and I know with our privilege of health and wealth I have no right to complain. But many days I wake up numb from the thought of figuring it out for yet another Blursday. If I didn't have to get up and entertain, teach, therapy, exercise Ruby all day, I could see how I might opt to throw the covers over my head at sunrise and stay in bed.

In the beginning it was total lockdown for our family. If you can remember back to the very beginning of this in early March, there were even more unknowns about this virus, and with Ruby's history of a compromised immune system, we didn't want to take any chances. So absolutely no 'playdates', no trips to the park (they were shut down anyway), no anything outside of our yard, unless we were on a family walk in the neighborhood. We got the memo that this was serious and we followed every recommendation for at least six weeks, probably because Ruby's bout with cancer taught us how quickly your health can be taken from you. So we stayed home, I was the sole grocery shopper once every 7-10 days, in full mask and gloves (remember those days?)...I even sanitized the groceries before anyone else was allowed to touch them to put them away. And the kids rallied so well because we all believed that if we powered through it, there would be a light at the end of the tunnel. One that would allow not total 'freedom', but something resembling living a childhood worthy of nostalgia. Plus, school at home was a new thing so we were rocking and rolling, somewhat enjoying the novelty of it.

But those days blended into 'summer' without camps or trips or swim team or most of what makes up our summer memories. Days got longer, and often not because they were filled with fun. But we again pushed through because there was a light at the end of the tunnel. We felt like we were finally close to the end of that tunnel this last week. It was a month until schools were planning to open, talk of classes and football games and back-to-school 'things' were happening all around us. Even though these discussions surrounded the logistics of how the events would be different, it gave us all something to anticipate. Something to get excited about. Then we were hit with the announcement of virtual school only.

*I feel like I should give a head's up that the rest of this post is filled with what is in my head, based on MY family's reality. Please know that I am not attempting to be insensitive or force my belief on you. This is me airing out what is weighing heavy on my heart.  I love and support our teachers and school staff. I don't want to put them in harm's way, and they too should have a choice. I am not suggesting the government or schools take away anyone else's choice in this matter, nor am I shaming those that believe or (would) choose differently than my family. In no way am I trying to minimize the seriousness of a global pandemic. This is me trying to work through how to live in the current environment.

Ruby and I were in a marathon doctor appointment the morning of the announcement, but my phone started beeping with texts out of the blue, demanding my attention. In bits and pieces I read news from friends when the doctor stepped out of the room. My heart sunk with every word. No longer did we have the option of virtual school or in-person school: our county was going 100% online. The fall school moments we have used as a carrot to help us through this time disappeared with that announcement.

Our family had opted for in-person school for this fall for all three kids (one in Elementary, one in Middle and one in High). It has always been our choice for all of our kids to attend school rather than homeschool because (for us) the benefits of being around and learning from other kids outweigh what we perceive the 'cons' to be. Even and especially for Ruby. To keep her in school, that means we spend a lot of time attending IEP meetings and volunteering at the school and observing her instruction and researching options and rights. It comes with a cost to us, but we know the benefits of her being around other kids every day far outweigh any other option available to us.

Enter COVID-19. Scary, unknown, worthy of a pause. COVID-19 has risks that are very real. But now we are over four months into a type of isolation that appears to have no end in sight. And we are already seeing the realization of some of the risks associated with that. Staying home from school (at least for kids who rely and depend on that) is far from risk-free. Lonliness, depression, regression (in social skills, development and academics), feelings of hopelessness, anxiety...these are just some of the risks for kids in this current state. (It's important to remember that the effects of those risks can be fatal!)

But kids are resilient, right? I agree that 'small' setbacks can be overcome once normalcy returns. I'm not convinced that it's without consequence though. This quarantine time has given most people gifts they didn't even ask for: more family dinners, time to slow down the busyness of life, opportunities to explore new hobbies. (Our family has definitely been intentionally looking for these gifts and keeping the positive outlook during everything.) However, I'm seeing regression in many areas with Ruby...areas related to social skills and speech articulation to name a few. I can't recreate a playground or group activity environment at home for her to work on social cues and negotiation. And even as loud and talkative as our house is, it's not enough to make up for her not being exposed to a classroom full of (typical) peers talking throughout the day, 5 days a week. No amount of family game time can make up for that, as beneficial as it is. And the big kids are showing signs of wear and tear as well.

So, rock and a hard place, right? Many people claim that we can't possibly return to business as usual when this virus is still on the loose. My question is why not? Death and injury by automobile accidents is a significant risk, but we still get in our cars every day. We even put our kids on school buses (without seatbelts, no less!). Water-related accidents are worth noting as well, which is why life jackets and lifeguards are used. That's risky, but the benefits outweigh the risk. Smoking and drinking affect your health, possibly resulting in permanent lung or liver damage (including fatality), yet alcohol and tobacco products are still sold and used in most places. Those that drink and smoke believe the reward to outweigh the risk.

Why do so many people take these risks every day? Why do we still drive cars and go swimming in the ocean and indulge in alcohol or cigarettes? Because we've decided that the benefits outweigh the risks. That is where many of us are right now...in a place where we recognize the risk(s) of COVID-19, but the benefits of resuming at least one of the biggest childhood activities our kids have known outweigh the risk of suffering through what would likely be flu-level sickness. (*Please know my heart: in no way am I intending to minimize the severity of this illness for those who have been hit hard. That is not the majority though, and for the sake of this conversation, I think that counts for something. Also, I am not suggesting a mandate to return all students and teachers to school - I support the model where there are both options available because returning to school is not a healthy choice for every family.)

Many arguments I've read in support of closing schools cite the reason as 'protecting students and school staff'. At this point, I disagree that schools staying closed protects the majority. I don't think our kids and teachers (and school staff) are finding full protection at this time. I think they are being exposed to feelings of sadness, loneliness and worthlessness because the joy they derived from the interactions at school have been removed for so long. And those feelings are not without serious risks, risks that have longer lasting effects, some of which we won't be able to determine until later. Not unlike the risks of COVID-19.

And I could (and might) write a whole post about how continuing online school is not a viable option for Ruby and many friends like her. Special Education is getting left behind in so many ways with this decision, and that stinks. I don't have all of the answers with regards to how to remedy that, but it is the reality of the situation that the gap between Ruby and her typical peers already exists and this model of education just widens it further with each passing day.

Y'all, it's emotional. We are all tied up in the emotional battle of what we think is the 'right' thing. I don't fault anyone who wants to continue to school from home. And I don't think that my strong desire for my kids to return to school means that I don't respect the risk of death. Most everyone I know has experienced death in their family, likely multiple times even in the last year. Personally, each time I experience a death in my circle, it reminds me that I need to take every opportunity to live. At this stage of the game, I want my kids to be able to live by way of experiencing a part of their life that can't be paused indefinitely.

Back to School

All three returned to school in the last week, but they each went their separate ways for the first time.

Ruby returned to our elementary school, this time to a 1st grade class. She has a handful of repeat classmates, which will hopefully help her find some allies while she's at school. She was SO excited to return. Even though we'd discussed the schedule of events, when we went a few days before school started for our meet-n-greet, she wanted to stay in her classroom. In fact, when I said, "OK, Ruby, it's time to say good-bye.", she turned to me and gave me a hug, saying, "Bye, Mommy!" The first day was not a problem for her.

Maddux returned to her (private) middle school. As a seventh grader, the start of this year is pretty standard, being the middle grade and knowing what to expect. She was excited to return to the routine of seeing friends all day, definitely more excited than she was about the actual 'school' part of it. She had a few extra days at home without her siblings, which she filled with volleyball and friends.

The first week of Middle School always includes a few days at a camp nearby where the students go for a retreat. I love this tradition, and Maddux was very excited to return there with so many friends.

Eli started a new school this year: our local public high school. So he technically had two 'new' things to deal with. I will say, his overall demeanor the few days leading up to the first day was the most apprehensive I've ever seen from him regarding school, even Kindergarten. But I understand. Moving to middle and then high school is a big step, but even bigger when you've been at a small, family-feeling Christian school for a few years, feeling all warm and fuzzy in a bit of a bubble.

As we've discussed with Eli, the choice to move back to public for these last years is intentional, in part to give him a bigger, more realistic world view while he's still in our house and has a safe place to land each day. (As opposed to waiting until college or moving out after high school and having to face 'real world' without knowing you had people waiting for you at home who want to support you.)

But that doesn't make it easier, especially for mama bear.

The first day went off without a hitch for Eli though, complete with him making it to all of the right classes on time, AND having a friend in each of his classes (including lunch). And we've returned to riding the bus, which is working out well right now for him too. (Or at least it's working for the Uber-carpool driver!) Strangest thing for us so far? Wearing 'regular' clothes to school!!

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.

IEP

Those three letters carry so many feelings with them, and they are all over the map: dread, anxiety, hope, fear, defensiveness, (over)protection, anxiety, pride...did I mention anxiety? The lead-up for them has been so anxiety-inducing for me that I actually had an 'episode' during one a few years ago. It was an IEP (Individualized Education Plan/Program) called by us after Ruby was (wrongfully, IMO) denied qualification for the Special Needs Pre-K. We worked for six months to prove that she needed to be in there, so that meeting was one I was especially nervous about, as I thought we might have to continue the fight. We didn't - Ruby was given correct placement, but not before I felt like I was about to pass out and had to excuse myself from the meeting for 10 minutes to get fresh air slumped against the building outside of the school.

I know...sooo professional!

Today's IEP was scary for me because it was the first one since she entered the elementary school. With real report cards and typical classrooms and all kinds of areas where Ruby needs help. The year has not been going perfectly, and that definitely caused me some anxiety when it comes to what her team might suggest for placement going forward. She started the year in the inclusion class (typical kids, about 4 of them have IEPs), with only one segment of pull-out services (this is considered a big win for a child with Down syndrome in our county). One of my many fears was that they would suggest that she be pulled out more often, or (even scarier for me at this time), that she be in a different classroom altogether. For the last month I have been meeting with friends who have gone before me, acquaintances online who are in the know, peers who have insight, therapists who know Ruby - all in preparation for this meeting. I've been over and through everything from what we think her placement should be for her to be successful, to what is legally required, to what is actually realistic, and everything in between. I've said it before: it feels like I'm cramming for a semester exam, but I'm not sure of the specific class I'll be tested on. When I went into this meeting today, I wasn't sure what they planned to recommend for Ruby, which means I didn't know what kind of defense, or offense, I needed to pull out.

The good GREAT news is, it went well. Very well. There were three extra attendees in the meeting, all either county level or school administrators, and those three brought a lot to the table. So much so, in fact, that I had a looong list of things I wanted to discuss and point out, and one by one, members of the team (many times two of the three) brought them up before I had a chance, and presented them in our favor. It was as if they were my advocates and had already seen my notes.

So, the battle is not over. There is much hard work still ahead, for Ruby, for the team and teachers, and for us, but there will be some new supports in place that should help her achieve more success. But more importantly - no, MOST importantly - today gave us a glimpse of at least two 'new' people that see Ruby. Truly see her, and are in her corner. That is what I want. That is what we have with some of our therapists, that is what we had with her Pre-K teacher(s), that is what makes all of the difference, in my opinion. People in her corner give us hope. People in her corner see her potential and work harder to help her achieve it. People in her corner are God's way of giving me renewed strength in my advocacy for Ruby. So as far as I'm concerned, today was a rainbow!

Onward

Today I came face to face with the reality that my bigs really are big. Eli and Maddux started school today, meaning they are both in Middle School.

Obviously I know this, and have known this, but seeing them both dressed in their chapel uniforms this morning, Eli with his newer haircut that makes him look like a cool teenager, and Maddux with her long legs and maturing face, it really hit me. Actually, it really hit me after school when they came in with their backpacks and laptops and cross country clothes, all sweaty from practice. They looked at least as grown up then, and they were so mature in their download of their respective days. Even better, they were getting along! It's like putting them in the same building actually helped their relationship, even if just for one day! They were totally talking and exchanging information about their day(s), respectfully and kindly. It's a first day of school miracle!!!

Maddux enjoyed her first day of 6th grade, meeting new friends and briefly connecting with a few she's met in the last week. Eli has lots of friends in all of his classes, which isn't a surprise as the small school allows you to know everyone (thus making them your friend). I was able to attend the first day convocation, which culminated in me getting to pray specifically over Eli before he started his day. That was awesome and something I hope he thinks was awesome too.

A 1st On The 1st

We are swimming in the eve of the first day of school (on the first day of the month). Any parent with a student, especially a Kindergartner, especially one with an IEP, feels the anticipation on this day.

And all of the emotions.

Hope. Fear. Pride. Anxiety. Joy. Dread. They are all present.

Hope for a year that allows success and thriving.

Fear that someone on their child's team or in their child's class won't see what you know.

Pride that their child is a year older and has a more diverse skill set.

Anxiety over wondering if that skill set will be enough.

Joy in the first day preparation routines.

Dread for the moment(s) when they will be smacked in the face by the reminder of their child's delays in the daily scope of a classroom setting.

You can fill in the blanks for these emotions with a variety of scenarios: behavior notes sent home, kids being unkind, bathroom or eating accidents, inability to meet IEP goals...the list is infinite.

But today, and this last week, I am honestly choosing Hope and Joy.

On this day last year, Ruby started in a classroom that allowed her to go to amazing places, academically, socially, verbally... The team and experience combined with our efforts at home and in therapy prepared Ruby for this big year of starting Kindergarten. In that, I have so much Joy.

In the last week I've met Ruby's new teacher, seen her classroom, reviewed with Ruby some of the many school 'skills' we've worked on all summer, and prayed like there is no tomorrow. And all of that has given me Hope. Hope for a year as successful as last. Hope for classmates that see the value of Ruby. Hope for my agenda and Ruby's team agenda to mix and mingle and move in the same direction. Hope for my girl to soar.

In preparation for this day, I wrote her head teacher a letter. Actually I wrote her two letters, each with several drafts, because that's who I am. (I can get lost in the trees of such a task very easily, especially when I view the stakes to be so high.) I wanted to give her a brief, but helpful first glimpse into who Ruby is. And who her support at home is. The letter was well-received, so I'm counting that as a step in the right direction. As I was writing, I definitely googled around to see if I could find an example to work from. That proved to be a struggle, so I'm posting my letter here in case it helps anyone else tackling the same task.

Hello!

It's the beginning of the school year, and we are so excited that you are a part of our daughter's team. Ruby is a very enthusiastic learner who loves to come to school. She attended (this school) for preschool last year, and she has worked with (Speech Therapist) and (Occupational Therapist), so she is very familiar with the school. Navigating preschool was a road of trial and error, and I expect it to be similar as she moves through kindergarten.

We don’t expect everything to go perfectly right from the start, and we know we will all learn together. I hope this letter will help start the ongoing conversation of how best to help Ruby and help her teachers, and I want you to know that we are always willing to communicate and listen.

 

I’m sure I am giving you information you already know about Down syndrome (T21), but in an attempt to let you know what it means for Ruby, I’ll share some general information. Ruby is more like her typical peers than different, with her own strengths and challenges. Just like every other child, it will take a little time for you to get to know Ruby, and it will take us a bit of time to learn how things work in elementary school.

 

All students have unique needs and learning styles, and Ruby is no different. However there are some common learning characteristics of students with Down syndrome that I wanted to share with you. 

1.     Students with Down syndrome tend to be visual learners. Ruby learns best by modeling those around her. Visual memory is often a strength; pairing pictures with new concepts will help her to remember.

2.     Students with T21 often have struggles with working and verbal memory. Ruby will likely need more practice with remembering/recalling multi-step directions, especially when they are given orally.

3.     Students with Down syndrome are often very social. Ruby is eager to interact with and help her peers. (She has done well in the past with learning their boundaries to her greetings/affection.) However, Ruby often lacks the same verbal skills her peers possess. She is very capable of forming meaningful friendships and relationships with peer and adults, but in the beginning, other students may need help understanding her spoken words.

Ruby’s greatest areas of strength are:

·      Memorizing short chunks of information (3-5 items on a grocery list, answers to basic questions about herself, sight words).

·      Social interactions. Ruby makes friends very fast and will run to comfort a friend who is sad or aid one needing help.

·      Willingness to learn. I cannot emphasize this enough; Ruby REALLY wants to learn and loves to work. When given enough support, she will rise to whatever level you expect of her. She does very well with routines and expectations.

Ruby may need extra help with:

·      Fine motor skills. Her handwriting is currently a big weakness, so modifications in the way of letter magnets or picture identifiers may help her stay engaged in lengthier writing exercises.

·      Impulse control on helping others, asking before sharing supplies, and appropriate sitting (i.e. in a chair, not on the floor, etc.)

·      Focus during counting. Ruby can count to 20, but the higher teens often stumble her. When she slows down and points to each object as she counts, she has success.

Please let me know how I can support you while Ruby is in your classroom. If you have questions, please know it’s always okay to ask; my contact information is listed below. I look forward to working with you this year, and know that together we can help Ruby have a great year!

End Of School

What a year it has been! Ruby has made so many great strides and met so many IEP goals this year; we couldn't be happier about her Pre-K year at Sope Creek!

With the end of the year comes parties and field days and celebrations a many. For the official field day, the 5th graders are given the great responsibility and privilege of escorting around the Pre-K and Kindergarten students during their time at field day. Of course Maddux asked to be assigned to Ruby!

Maddux was able to assist Ruby and her school bestie, taking them to each station and assisting as needed. They three girls had a blast and it was so fun to see Ruby taking it all in.

The end of year party was an opportunity for the parents to join the Pre-K on the playground for lunch and Popsicles and fun. Ruby loved having me there and I enjoyed watching her in her element, always interacting and checking in with her peers. We are going to miss our Pre-K 'bubble'!

      

On A Roll

Ruby is on some crazy streak(s) these days! Her speech is improving all of the time, allowing her to string together broken sentences spontaneously. (When playing by herself, I heard her say, "You hurt? Doctor. No, happy now. OK, bye-bye.", and when she's playing with me she will say combinations of, "Come, sit here, Mommy. No books, puzzles, please.") And her maturity in some situations is blowing me away. She is walking into the grocery store with me more often now (as opposed to riding in the cart so I can contain her), and she is doing many things independently.

Yesterday was the Kindergarten Sneak Peak, and Ruby rocked it. We talked it up a lot at home, reminding her that while it was her same school, this was for 'big kids'. When she and I arrived, she held my hand as I'd asked her to, and waited in line for our table assignment. Once we arrived at our table, Ruby immediately sat down, in control of herself, and started to color with the supplies laid out for her. The teacher in charge of that table told me that I was to go with the adults, leaving Ruby there to wait for the rest of her table before walking to the Kindergarten classroom. I was hesitant, but Ruby stayed seated, coloring and listening for instructions. She was very controlled and obedient!

Ruby is also starting to progress with her fine motor skills, which is huge because that is so vital for handwriting. She holds her crayon or pencil correctly almost every time without assistance now, and she is getting better on trying to stay in the lines with her scribbles. When she was born, we focused on physical therapy immediately, to get Ruby to a place where she could sit, and crawl, and walk, because she had to be able to physically keep up with peers. And then we moved to speech because talking is important for early socializing. Occupational therapy for fine motor skills, while important, always took a back seat to the other two. So while we've always worked to strengthen her fingers through signing, play-doh, etc, the percentage of time spent on OT is way less.

In the last month or so, I've really hit this harder at home: we practice on the upright chalkboard a lot (that makes it a little easier), and we trace highlighted letters and numbers often. Ruby is really good at tracing her name (or anything) if it's highlighted on her paper first. Last week I broke down my verbal cues for her writing a capital "R" in a different way and all of the sudden she was making "R" on the chalk board. Then her teacher sent this home yesterday.

So exciting that she wrote this all on her own!

Maddux Makes the Grade

Maddux has always had pretty good grades; both of the big kids did through elementary school, even though their conduct often dipped into the "needs improvement" category from time to time. Last year she set her eyes on a 'perfect' report card though, and asked to tie a reward to it. (And as you might expect with Maddux, that reward request has changed over time.)

This last fall, Maddux had two report cards, both close to straight A's, but not quite there. And then, without much fanfare, she totally pulled it off in the third quarter! She was SO excited, and we are super proud of her for working towards her goal  (and the report card is still hanging on our refrigerator, over a month later). When it came time to collect her reward, she requested to go shopping at the mall with mom. I don't do the mall, which means we as a family don't do the mall. But she has seen it when we've gone to Costco, and she knows that there are stores in there to buy clothes. So to the mall I will take her.

IEP Time

While it's not an 'official' IEP, because those take place in the fall for Ruby, an end-of-year IEP amendment is a big deal for us because they shape the start of the next school year. And this year is a biggie, as Ruby will be transitioning into Kindergarten in the fall.

We waivered initially on that big step, but listened as Ruby's teachers reminded us of her comprehension of all preschool concepts. That, and we prayed, and researched, and talked with other parents (hello, T21 Tribe!) who have gone before us, both pushing ahead and holding back. In the end we agreed with her team that moving ahead would be the best for Ruby at this time, as it would allow a higher ceiling of academic content for her (even if she ends up repeating Kindergarten). And we know that it's not realistic to expect her to catch up to her peers in the areas she has weakness in (fine motor skills, speech) before moving ahead.

Our experience with Ruby's school (her zoned elementary school) and her team has been encouraging in the past year and a half. While we know that Ruby's educational road may have some bumps and roadblocks along the way, so far this school has given us a lot of green lights. The IEP meeting reflected that as we discussed the assessment of Ruby's performance in this last year. Here are just some of the great things that her team documented on her progress report:

• Ruby does a great job counting 1-10 without help.
• Ruby is independent in the bathroom (with an adult checking on her) and verbally communicates her needs to use the bathroom throughout the day.
• Ruby counts the correct number of objects from 1-6 consistently.
• Ruby is independent in the lunchroom, unpacks lunch and feeds self.
• Ruby has really caught on to the concept of making patterns. She has done an amazing job of completing simple color patterns. 
• Ruby is able to trace her first name with accuracy. Goal mastered!
• Ruby is able to cut large shapes from construction paper with some assistance to turn at the corners.
• Ruby is very social in the classroom and loves to be part of all activities.
• Ruby has grown tremendously in her ability to participate in her SNP classroom this year.

This is a big deal to me because these are things that are typed into the system, in Ruby's team's own words. They are not passing comments made on a note home to make me feel good about her day. And her teacher and OT provided several samples of work that I had not seen yet, all giving great color to her fine motor growth: shapes drawn totally on her own and letters written without being traced. We work on those things at home, but I'd never seen her perform as well as the samples they pulled out. (Yay!)

We discussed placement for Ruby's Kindergarten year and agreed on the inclusion classroom (a typical classroom that includes a few kids that will need some extra support INSIDE of the classroom). She will be pulled out for speech and OT a few times during the week, and she will get pulled out for one Language Arts (ELA) segment each day. They initially wanted to pull her out for two ELA and one math segment, but I asked if we could try the first quarter without any pullouts (to allow her to show us what she could do). Due to the ramped up fine motor requirements during the ELA segments, they worried Ruby would become frustrated quickly, so we compromised.

All in all, it was a great meeting; we are happy with the outcome, and we know Ruby is going to rock it!

World Down Syndrome Day 2018

A few years back, Eli asked to talk to his 4th grade class about World Down Syndrome Day. This year, Maddux followed suit. (She claims she did this last year, but none of us remember that, and surely we would!) Just after Christmas, Maddux started talking through a power point presentation she planned to put together to show her class. She was granted permission by her teacher, and went to work. In true Maddux fashion, it was 300% heart with just about 80% work: the night before she was to present, the power point was still being worked on. But that is to say nothing of the sentiment of it all. While Maddux wanted to do this 'big' thing in her class, what she has done in every class, and in the whole school, is introduce kids to Ruby in a way that is all things good. She always brags on her sister and introduces them to her friends and teachers. The whole school already knows Ruby, and it's largely in part to her amazing big sister.

The day before World Down Syndrome Day, Maddux got up in front of her class and gave the presentation she practiced at home. She said there were a few questions, but mostly the kids just listened and agreed to participate by wearing different socks (and red, for Ruby). The morning of, I went to Maddux's class to get a picture of her and her friends. It was so cool to see all of these kids participating in something they might not have known anything about before Maddux's presentation. We reminded her how cool it was that she impacted those kids in such a big way; their interactions with people with Down syndrome - or maybe just people who are different from them - will be forever changed.

School Stuff

Ruby loves school. Have I mentioned that? Because it's awesome...really awesome to have a kid love school as much as she does. And I'm sure I've blogged about many of these things already, but I love that they happen, so I'll write about them again:

• When she comes back to school after a break, sometimes only after a weekend, she hugs her friends and tells them, "I missed you!"
• When she gets in the car to go to school each morning, she recites their names and the letter each starts with, and sometimes she sings "Happy Birthday" to one of them.
• When she and I are waiting at the front office for one of her teachers to come get her in the morning, at least as many kids say "hi" to her as she does to them, and if they can get a hug, their day is made. (And that makes MY day!)

Last week I was taking photos of some of the classes at the school for some upcoming projects. When I got to Ruby's class, they were in the middle of a Valentine's Day activity involving an obstacle course. It was SO fun to see the kids participating and loving all of the extra movement. Ruby, of course, smiled the whole time and couldn't get enough.

More School Fun

During Ruby's IEP meeting before Christmas, we discussed placement (meeting to follow in a little over a month). Her team currently feels that Kindergarten would be the best place for her, given her current strengths and comprehension of material. While we have not totally decided, we did ask that in preparation for that, Ruby be allowed to participate in a Kindergarten class at times during the spring. One of our concerns for starting K next year is the larger class size (where Ruby gets less one-on-one guidance for success), and the transitions to different classrooms. I'm not worried about it overwhelming Ruby; my concern is it will be so much and so exciting that she will struggle with impulse control (more than she already does).

The team was amazing and agreed without hesitation during the meeting. True to their word, the made it possible for her to join one of the kindergarten classes for morning circle time last week. After sitting in on (and loving) that, they passed another class on the way and joined that class as well. Ruby apparently knows that teacher and interacts often. She did great, sitting and working on handwriting prep, but did not want to leave when it was time.

After lunch and rest time today, Ruby joined yet another Kindergarten class for their music 'special'. Ruby sat when the kids sat, stood when they stood, listened and followed directions, and even thanked the teacher when it was all done.

My heart is so happy right now!

Talking Talking Talking

This girl just keeps going with her conversational speech! Over the holiday break she picked up a few new phrases:

• "Oh WOW!"
• "Oh my gosh!"
• "Santa Clause. My HOME!"
• "I missed you!" (my favorite)
• "Oh, dangit"
• "Oh, Yes, PLEASE!"
• "Tag in back" (when referencing how to put on pants)
• "I can do it!"

I couldn't love all of these new phrases more, especially because they were not intentionally taught; she just picked them up in her daily conversations with other people.

When returning to school this week, she hugged each of her classmates and told them, by name, "I missed you!". She also told her teachers that she was 'so happy' to be back at school.

Today is one year from the first day she walked into that classroom. I can't believe how far she's come in a year, and I couldn't be happier about all of the continued new
speech!

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.

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.