What Do You Get When You Cross An Elephant With a Skeleton?

So the 'elephant in the room' metaphor is used when there is a big issue or problem that no one wants to talk about. And when someone has a skeleton in their closet, the reference is made regarding an undisclosed fact about that person that they would not like others to know about. When thinking about this particular topic, I wrestled with which one of these idioms was the correct description. I settled on both.

Kids (maybe even all people?) with Down syndrome often display signs of ADHD. My uneducated observation is that some of that is due to delayed development. Any parent of a toddler knows not to really expect their kids to stay 'on task' or not act on every impulse or sit still. At some point, kids grow out of certain behaviors, but those in the T21 community take longer to do so, meaning these early childhood 'symptoms' are still present years after their peers have moved on.

ADHD is not a new diagnosis; pretty much every one, especially those with kids, has heard about it or knows someone dealing with it. But (in my limited experience) the actual diagnosis of it is not an exact science. Many kids exhibit some of the signs, but figuring out if they are showing 'enough' of them gets tricky. When it comes to the big three of ADHD (inattentiveness, hyperactivity, and impulsivity), how do you determine if your child's inability to sit still is ADHD or him just being a kid? Or what about impulsivity? As a parent of two teens that often remind me that the undeveloped prefrontal cortex extends much beyond elementary years, I can assure you impulsivity is something that is present in a wide variety of kids NOT diagnosed with ADHD.

So here is the elephant in the room. Our kids with Down syndrome are more likely to display these signs at a time in their lives when typical kids are not expected to anymore. So many of us start to worry when our kids enter school and these symptoms start to stand out. (Well, let's be honest...we started worrying a long time ago. This is just us adding to the other worries.) We ask our friends, we ask our doctors, we go online... And most of us find out that plenty of our child's T21 peers struggle with the same thing. There is some comfort in that, of course, but unfortunately, most of us are in educational settings where we are the only one in the grade, maybe even the school. So knowing that it is common and 'normal' for our kids to struggle this way doesn't help when it comes to our kid operating in a school where no other kids are struggling that way. So we are back at worrying about what to do.

Enter the skeleton.

If we ask around enough, and do enough deep dives online, we likely come across someone who brings up ADHD. Eventually that leads to medication. ADHD medication, while absolutely vital for many people, often evokes less-than-good feelings. Whether it's because of the experience of negative side effects or the shame of needing medication or the frustration with over-prescribing, it's not an admission I've found people to offer up freely. It's that thing that never came up in the baby books, in the conversations with other moms about what therapies are best or necessary, in the online research about developmental toys or games, or even in the endless doctor appointments. But once I asked the question, I found that we were far from alone in dipping our toes into the world of ADHD and the treatment that comes with it.

That was a loooong intro to get to how this works into our lives. When Ruby started Kindergarten, the impulsivity and inability to focus was brought to our attention daily. It was something we'd seen at home, but either because I work with her one-on-one so much or because I'd gotten used to it, it didn't seem like a problem. So we tried some non-medical options: different fish oil supplements that had great success with focusing. We never noticed any change. So we did research on CBD oil and talked to other parents just ahead of us that described their child 'before' with great similarity to Ruby. We gave it a shot with no improvements. Finally we tried one more 'new and improved' fish oil supplement. Nada.

At this point, I was ready to keep pressing forward. Of course I want Ruby to succeed in school, but I was starting to see how her behaviors were affecting her socially. I didn't want her to miss out on friendships and experiences because she couldn't stop petting someone's hair or writing on their paper or hugging them too hard.

Just before Thanksgiving I met with Ruby's doctor to talk about what we do from here. She had never pushed us to the diagnosis, and certainly not medication, but she saw what we saw and was wonderful in answering all of my questions regarding this next step. (And I had a LOT of questions: I scheduled an appointment for just me to meet with her, without Ruby, so that I would not miss anything.) We agreed on a stimulant, very low dosage to start. We talked through the side affects and what I should see when and how we could stop if we needed to.

With hope and trepidation I gave her the first pill the Monday we returned to school. Her teacher texted me a few hours later with rave reviews. Ruby was talking with such precision and order of speech (oftentimes her longer sentences are out of order), and she was more focused than they usually see her. I was over the moon! However, when I picked her up, she was tired and a bit withdrawn. I knew this was due to the meds, but I still didn't love it. I treaded lightly and just loved on her all afternoon. The next day was the same: great at school, not happy or upbeat at all at home.

The week continued on that way, so I gave the doctor a call before the weekend. As much as we were loving the positives (the teacher was getting so much great work out of her, and her interactions with peers was wonderful), I was not ok with how sullen and almost sad Ruby was in the afternoons. We discussed a few strategies to try for the next week, and if nothing changed, we would discontinue.

By the time the week started again, everything evened out, on both side. Ruby was fine in the afternoons, and she was still having good days at school, though not quite as impressive as the week before.

So here we are, about 7 weeks in. (We did try to increase at one point, but we noticed no gains and Ruby's internal clock woke her up well before 6AM.) Is this medication the silver bullet? Definitely not. Ruby is still impulsive, easily distracted and fidgety, but it doesn't get in the way as much as it did before. And she doesn't appear to experience any of the negative side affects (except for that first week), so we are sticking with it for now.

Hi!

Ruby says "hi" to everyone she sees.

Seriously, EVERYone.

This happens as we walk from her school to our car, when we shop through Publix, even when we are driving and stop at a red light. (Seriously.) And she will pursue the people she is trying to connect with relentlessly until they meet her eyes and reciprocate. Hi. Hi. Hi! HHHIIII!

Because I'm not blessed with 47 chromosomes and because I'm a typical cynical person, too often I find myself trying to rush her through this process, especially when the subject does not appear to be receptive. I feel like I should apologize for Ruby overstepping or interrupting.

But that's just dumb. Because when she makes the connection, which is more times than not, the person on the receiving end of her greeting lights up in a huge smile and sometimes even engages back to her with a comment or question.

That often leads Ruby to grab/hold their hand, give a hug, or physically 'love' them in some way too. And they appear to be delighted by the interruption, glad for the overstepping. And who wouldn't? Life is hard and we too often find ourselves putting our heads down and just trying to push through. It's nice to have a reason to stop and look up.

And then I read this post from Heather Avis a few weeks ago. Love it, and she penned it better than I could hope to, so go read her take on this same phenomenon.

At the end of the day, this I know: our family hugs way more because of ruby. We say 'I love you' way more because of ruby. We look into each other's eyes way more because of ruby. She leads the way in connecting with each other and we are so lucky to follow along.

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.

Buddy Walk

This event is one of our family's favorite annual celebrations. We gather with oodles of other Atlanta area families connected with Down syndrome in some way and just enjoy our community. We have always invited some of our 'typical' community to join us as well; two years in a row we had over 100 people representing Team Ruby! The last few years we have done less 'promoting', opting for a smaller gathering that day, in an effort to be able to hang out with the T21 family as well. There has still been much Team Ruby representation though, because you can't deter the love these people have for our girl!

That was so obvious in our team this year: over 1/3 of our Team Ruby participants were part of her teaching team at school. Amazing! These women spent the bulk of their Saturday with us, supporting Ruby because of two things: they are AWESOME and they love Ruby!

The weather was perfect, the setting was green and grassy and ideal for just hanging out, and everything except for our tent blowing away (twice) was perfect. Ruby thoroughly exhausted herself climbing up and down and through the bouncy houses and inflatable slides as much as possible leading up to the 'walk' at the halfway point.

She then obliged us and walked (or rode on shoulders) for the short processional. Her receiving her medal was a highlight for me!

And then she and her best 5th grade friend tackled all of the inflatables again (and again and again).

We shut the place down, finally packing up our tent after most of the official event clean up was complete. We just didn't want it to end! So much love for such a great reminder of the reach of Ruby.

More Than Lucky

When I got this tattoo, I did it to remind myself of the community that I have the privilege of belonging to because of Ruby. There were many moms that I had connected with that help me find stability in a sometimes rocky journey. They offer guidance, companionship, and counsel whenever I need it, and I wanted to honor that 'tribe' by inking The Lucky Few arrows on my arm. After this last weekend, that tattoo has become deeper in meaning.

For the last few days I had the pleasure of escaping town and attending a Down syndrome conference with over a dozen of these women. Some of these women I’ve known in person for years, some of them I’ve only chatted with on the phone or in text, most of them I see once a year at best. But none of that mattered as we came together in our version of a sorority house for the most humble,  connected, supportive experience that I’ve ever had with a group of women (who also happen to be very diverse in their walks of life, linked pretty much exclusively by the fact that we all have a child with Down syndrome).

For three days we talked and laughed, and got real with each other and got silly with each other, and talked about Down syndrome and talked about anything BUT Down syndrome, and swapped recipes and swapped hard life stories, all the while moving from small groups to big groups to one-on-one conversations to quiet reading times by the pool to a loud boisterous table talk. There was no expectation of how you were to spend your time and there was no judgment. We could go to bed early or stay up later than any of us have likely stayed up since we have become parents. "You do you."

While we were at an amazing conference, most of us agree that the house, the time spent with just us was the best part of the weekend. However, the conference had a standout moment for all of us when a 'mom panel' answered a few questions from the perspective of having having teen and adult children. The wisdom and experience in the answers these women gave was palpable. We were all left wanting more, and I kept thinking about how they had come to be so wise and full of perspective. Fast forward to a heavy conversation a few of us had just before bed the last night, and I was in awe once again, but this time by the moms I was sharing the late night hours with. It struck me that we all have some of that wisdom and perspective now, especially when we are giving counsel to someone else. (#mindblown)

Enough rambling.... Even all of the many words I've typed cannot sufficiently describe the freedom and restoration that occurred in less than 72 hours, but I know that as bonding as our experience has been walking through our lives touch by a diagnosis, this weekend cemented the deal. These women challenge me, they encourage me, the lift me up, they sit down with me... So whether we wear the arrows on our skin or around our neck or on our heart, we are all so amazingly woven together that to call these women my 'tribe' seems like an understatement.

Big Chicken

One morning in June I received an email from a member of our T21 community indicating that a local photographer was looking for a local family of four, including a child with Down syndrome around Ruby's age, to do a photo shoot for a Chick-fil-A ad. Even though we didn't meet the family-size requirements, I submitted our family photo and information because I was so excited that there was interest in this type of ad. A few days later, the photographer contacted me and asked me a few questions about Ruby and before I knew it, we were being sent directions for wardrobe. This was happening!

The day of the shoot, I packed up so many clothing items to provide options for the shoot - I think I bought out all of Old Navy! When we showed up, there was a photographer, Chick-fil-A food preppers, a stylist or two, and assistants for all of them. They picked a dress for Ruby first and I took her to the bathroom to get changed. Almost immediately Maddux was in there with us too, putting on a dress they chose for her. 

The first 'scene' they shot was Ruby alone. She was sitting on a wooden chair, soon to be holding a bowl of Mac-n-Cheese. (At this point, CFA did not have Mac-n-cheese on the menu, so this was a very exciting surprise for my kids.) For a bit, Ruby was just to hold the bowl, they would rotate it in her hands, they would move her in the chair, they would change the lighting and lens and everything else, all the while shooting photos on rapid fire. Finally, they let her take a bite. And from that moment on, she was eating the entire time they shot. They had to keep the bowl full for the photos, so  with every bite she took, they replaced it.

When they were done with this scene (probably an hour of shooting), they gave Ruby a break. She sat on a couch with Lehr and read some books while they set up the next scene. This one was to be a picnic and they wanted to use Maddux and Eli also. To set the lighting and staging, they had the big kids sit there the whole time, so they could give Ruby a break and (hopefully) pull her back in when they were set. Maddux and Eli did great, mostly holding food and drinks, as another thousand photos were taken. (Later, they complained that their legs and feet hurt because of the angles they had to sit and hold for so long.)

Finally the picnic scene was ready to pull Ruby in: she'd had a great break, but I worried that she wouldn't be able to shift gears again. As she often does, that girl proved me wrong and sat right down with Eli and Maddux. She listened to the directions and held the things she was supposed to hold and ate the food she was supposed to eat. This portion was maybe only 30 minutes, and when they were done, the photographer told us we were finished. (The good news was that meant that all of the clothes we didn't use still had tags on them so I could return them!)

I promised the kids we could stop at Chick-fil-A for milkshakes when we left. Ruby fell asleep no less than five minutes after we got in the car though, so she didn't even receive her payment for modeling so well. That girl was spent...she used every bit of energy she had in that three hours!

And can we talk about that three hours? Ruby did SO well. When I think about what it required for her to sit still, in the position they asked her to, for an hour, and smile when they said smile, eat when they said eat, hold a bowl the way they wanted...the focus and attention and self-control she displayed was impressive. And then, to take a break (which she probably thought meant she was done for the day) and still come back and do all of that again...amazing to say the least.

 When we left the shoot, we didn't know when the photos would be used, but we knew it wouldn't be for a few months because the Mac-n-Cheese wouldn't be added to the menu until the fall. Outside of that, we had no information about when (or even if?) the photos would be used. So I watched social media starting in August, hoping to see Ruby's smile. At the end of the month, I reached out to the photographer, just to see if he'd heard anything or knew if they'd been used already and I'd missed it. He had no information, but said he had submitted the photos to Chick-fil-A (so we knew they were out there, at least).

And then, just a few days later, I woke up to an email from a friend who received a Chick-fil-A email including a photo of Ruby. And then a text from another friend with the same photos. And then Chick-fil-A's Facebook page changed their cover image to the three-kid photo. All day I kept receiving texts with photos from friends and reposts online from friends in other areas of the city and country that received emails or saw her on social media or on the CFA website. It was like Christmas! Every new photo of Ruby that popped up was cuter than the last. 

Y'all, this is SO exciting for our community. Just as has happened a few times in recent years, an ad for a major company has used someone 'different' for a campaign. And we couldn't be more excited about it because putting the face of a child with Down syndrome in the mix with all of the other typical kids out there helps us all remember that what makes us different makes us beautiful. So thankful for the companies that are recognizing this, whether they include models with Down syndrome, or in a wheelchair, or with a prosthetic....we love it all!

friends

there is so much imaginative play these days. you are always cooking. ALWAYS. but a newer addition in the last few weeks is the gaggle of many imaginary friends around you at all times. 

this makes me at the same time happy and very very sad, and I don't have a place to put how i feel about that.

Look At Me

I want people to look at Ruby. I want them to see her so much that they don't bat an eye when they see someone else who looks like her. Just like when you first painted your living room a new color: the sight of so much new shocked you to the point of doing a double take the next morning, but after a few days, it became part of the landscape because you were used to it. I take her every where I go, and people notice. I hope they notice promise and ability rather than despair or disability.

There was a big story in the news, or at least the special needs community news, last week about Shawn Johnson and her husband and their journey towards a possible Down syndrome diagnosis for their baby. This story has come under much fire in our community, mostly because many families feel that the Today show missed an opportunity because the tone of the story felt fear-based...like a bullet was dodged.

*Let me be clear in my take on the way it was reported: I feel like I've been very transparent in my own very fearful and sad reaction when we first got Ruby's diagnosis, and in several times since then. I don't fault this couple for being scared or even relieved when their tests came back without a T21 diagnosis because most people, including me, would likely have those reactions. Those feelings are very very very real, and reporting them is definitely important and relatable. 

In regards to 'our' issue with the story, I think most of 'us' feel it would have been great for the Today Show to end the segment with a look at some families living with Down syndrome (to see the positive impact the diagnosis has), and to also provide some resources for those receiving the diagnosis in utero. I think everyone can relate to the fear surrounding a diagnosis (as the story reported on), but not everyone knows or sees the other side of it. So many people are only exposed to Down syndrome (or other diagnoses) through media, so I realize that this puts a lot of responsibility on the entirety of reporting on stories surrounding them. But I think we have to provide the whole story. I can only imagine how hard it must have been for an expecting mom or dad, still reeling from a T21 diagnosis, to see this segment, ending with the summary that "whew....not us". It had to feel like a low blow.

So when you see Ruby or others out there, in the sea of 'normal' people, I hope you see ability and I hope you see value. Many times it would be much easier to stay at Gigi's or the pull out class at school, or even just our home bubble, but that would be depriving everyone who is not privy to this world.

self fulfilling prophecy

sometimes i wonder how much of your tendencies, your behavior, is because you're Ruby, how much is because of Down syndrome, and how much is because of how i parent you.

if i'm being honest, i baby you in some ways. i still pick you up (though i swear most of the time that is because i know your stubborn streak will not permit you to move when i NEED you to move), i still snuggle with you until you fall asleep, and i still call you my baby girl. i'm sure an outsider could find a dozen more ways too...

so why, then, am i surprised that you still suck your thumb when you get tired (which is a lot)? it's a habit your brother dropped before he started school, and your sister minimized almost completely by now too. yet you hold onto it, despite all of my best efforts to break you of it.

"by self"

as time-consuming as those words are, they are music to my ears. because we didn't know if or when or how you would be able to communicate with us. because there are so many things that are still out of your ability to reach. because those words remind me of how determined you are. shoes are something you first succeeded at hundreds of days ago, yet they still stump you sometimes. today you found these shoes in your closet and set out to put them on and fasten the velcro, again and again, as if to keep proving to yourself that you could do it "by self".

little victories

much more of a marathon than a sprint. potty training has been taken to a whole new stratosphere with you. it is my most despised parental duty, probably because i don't think i can honestly do anything to will someone to notice a biological need. with your brother and sister, it wasn't fun, but it was quick. with you, we worked tirelessly for over a year, seriously worked, before it started to click. and even though now that you are trained, and now we are done, we know we are not really done. in the back of our minds there is still the knowledge that anything from a virus to an extra fun day in a new environment can throw you off and we will have an accident on our hands. months will pass and try to make us forget, but we don't. so today, when you excused yourself, and successfully did your business solo as you do all of the time now, i silently thanked God, reminded myself that many of your peers' parents don't have the most-of-the-time luxury that i am currently witnessing, and reveled in how far you've come.

Not Invited

For the last few weeks I've been trying to work more on my photography, which usually means looking at countless images, trying to take note of how they make me feel and what about them makes me want more. In the process I came across an a British photographer that has such a perfectly simple style...I poured through so many photos of hers and then I saw some of her youngest daughter. I thought, but wasn't sure, that she also had an extra chromosome. Of course I dug deeper and confirmed, and in the process found a collection of work she took of her daughter, Alice. Beautiful. Simple. Real. She titled one photo "Not Invited" and I can't stop thinking about it.

How many times in Ruby's life will she be 'not invited'? How many times has she already been 'not invited'?

How about when she was born?

I can't change it, but my initial reaction was definitely one of such disbelief because a baby with Down syndrome was not invited to be part of my story.

The emotions that come along with knowing my then feelings, and even (if I'm honest) my sometimes-when-I'm-scared-and-frustrated-and-overwhelmed-thank-god-it-passes-quickly now feelings are hard and confusing to say the least.

This concept of 'not invited' is hitting home very hard right now, mostly because of school. It's hard, y'all. I don't know the solution. I don't know if there is a perfect answer. But even assuming the best of intentions by everyone in every school situation that is to come, all of the extra work that goes into it makes me feel like Ruby is 'not invited'.

Back to her birth, Eli and Maddux immediately invited her into their hearts and lives. But as siblings often do, they squabble now. And I worry about her being 'not invited' during moments of their lives that might a little -too much- with her involved.

And probably mostly because of me and my fears of drawing negative attention to Ruby, but going out to do most things (like dinner out, a park visit, the grocery store, a doctor's office) often brings feelings of being 'not invited'. Because my girl is handsy. Because my girl is impulsive. Because my girl is curious. (All of those things could be because my girl is five.) It's sometimes feels like showing up to a china shop with an energetic dog - not invited.

On the nights when I lie for too many hours in bed, mind racing, often those thoughts are of Ruby and her future. Of course I worry think about middle and high school. Will she participate in school activities? Will she be accepted by some of her peers? Of course I worry think about college and her young adult life. Will she have independence? Will she have a job that gives her a feeling of purpose? When I allow myself to go to her mid-life, when Lehr and I are hopefully old and retired, I wonder more about her invitation status without us. That's a lot to think about when your child is barely in school...

This has nothing to do with the amazing friends around us. They go out of their way to make sure Ruby is invited. I think this feeling is more of 'not invited' in this world as a whole. The termination rate is sky-high for babies with Down syndrome, even in the United States. That's the ultimate sign of not being invited, isn't it? And yet here she is, possibly evoking feelings of 'I'd rather not' in those around her. So Ruby's very existence is one usually not sought after, let alone invited. (Are we in that dark place yet?)

Sorry guys, just a little melancholy about the invite list these days.

Therapy Update

It's been a while since I've posted an update on Ruby's therapies. Here we go!

Speech
Ruby is stringing together words more and more often now. Instead of saying, "Tall", she might sometimes ask, "how tall Eli?". And one of her favorites right now is "Stop mommy!" She will sometimes follow it up with something like "my turn" or "No sing".

The emerging sentence structure is a good thing, no doubt, but it is a reminder of just how delayed her motor planning is in regards to speech. That girl barely gets cut a break in our house with her speech. (i.e. When she say, "milk", we make her give us a sentence or request like, "More milk, please." or "Can I have milk, please." Repeat this with every aspect of her day, all day long!) Even though she is improving, it is a sloooow process.

Ruby is repeating everything, which is huge! I remember vividly when she was two, turning over photo cards with her and saying the words with the hopes she would make any kind of approximation. Now she will not only read words (or identify photos) spontaneously, but when she hears her siblings say things, or especially if she hears a new word or phrase, she will repeat it intelligibly.

Sight words are something we've been working on for a full year, in preparation for this kindergarten year, which is so focused on sight words. Ruby currently does 35 of 50, give or take a few, on the first try, without any prompting from me. She is starting to read more and more, but that's almost always directed by me; she has yet to discover that she can find those sight words in her books without me next to her.

OT
Ruby is buttoning and unbuttoning big buttons on sweaters and jackets! Unfortunately, most of her clothing is smaller buttons, but you have to start somewhere. Her OT at school has a few sweaters for Ruby to use as practice and her manipulation is coming along. At home we are starting to see her become more skilled in zipping up her jacket too. She has yet to be able to line up the zipper on her own, but once there, she usually holds the bottom and zips up herself.

Regarding scissors, she is getting much better at cutting shapes with scissors. Turning her paper to get the corners or curves is a challenge, but with minimal help, she is making it all of the way around shapes like circles and rectangles.

PT
We are not formally doing PT at this time, and we don't have swim or dance classes. BUT we are always looking for physical therapy opportunities in our day, so it is still something I can measure growth in. Ruby now often alternates feet when walking on stairs - up is easier than down, but if she's holding my hand, she'll do it on the way down.

Ruby's jumping stamina is still increasing. Just a year ago we finished Aquatic Therapy because she was finally able to jump enough to clear the height of a pool noodle. Now she jumps on and off curbs, over small sticks, and in place just for the fun of it!

Another big thing Ruby is doing, something she's always done, is mimicking and imitating other's actions. If she sees someone doing something of interest, she intently watches and then repeats it. This is a HUGE part of why we push for inclusion at school for Ruby, and it is helping with PT things as well, like balancing, running, riding a bike, bouncing a ball, etc. One fun way it came into play last week was during Maddux's basketball game. The players and coaches circled up for prayer before the game, and Ruby grabbed an older friend's hand, and Daddy's hand, and led them to circle up as well.

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!

Buddy Walk

This year's Buddy Walk was last weekend. We knew we would not have the same size team we've had in years past because we honestly didn't get the word out until later, and we weren't as good about our invitations. Also, the Atlanta walk was moved to a Saturday (instead of it's usual Sunday), and that interfered with fall sports for many families. In the end, we were actually glad we did not have as big of a crowd because it was so so very hot!

Ruby and the kids had a blast though, hitting all of the cool spots throughout the day. She especially loved that one of her favorite older friends joined our family for the day and proudly carried the Ruby 'head'.

For the first hour or so, our only 'guests' were Ruby's Pre-K teacher and her daughter. This was SUCH great news for Ruby as she loves Miss Jennifer so much. She seriously stuck by her side the entire time she was at the walk. Right around the time she left, the rest of our team arrived. We hung out and enjoyed the free Waffle House and Kona Ice, and then took our little walk around the parking lot.

Lehr and I got to meet a new family, who ended up joining us at our tent. I got to see so many of my friends from Gigi's and from my tribe, and we loved sharing it all with our typical friends that came out to support. We are so so grateful for all of you in our lives!