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.

margin

whenever we find it in our busy schedule, i get excited and find myself breathing it in deeply.

the randomly discovered friday night or sunday afternoon that we end up riding our bikes on the beltline or playing in the yard is so coveted but so hard to come by.

when the spread of the virus reached the point that warranted school closing, our family went into shelter-in-place mode. ruby's lungs and immune system are inconsistently compromised, so we don't need to take any unnecessary chances. it's my opinion that if we are going to do this, let's do it all of the way.

the first week found us learning the new normal with school, work and play all taking place at home. there were some bumps along the way, but for the most part, we transitioned quickly and jumped right on board with the extra time to just 'be' as a family.

what that is currently looking like is breakfast and lunch with at least one other person, savored 'coffee' time (ruby drinks 'coffee milk' or 'fancy milk' in a mug with her pinky up), bike rides, family walks, evening foot golf in our yard, dinner together EVERY night, lots of family movie nights, random house organizations and yard projects, and chalk. so. much. chalk.

there was never a better time to have a new driveway and back deck - i am SO grateful that we were able to replace those two things in the last three years. they have made this time much more comfortable. and the timing of this life shutdown in our kids' lives is on-point. in another few years eli might be away at college, and maddux could be driving. having this happen while we are all under this roof still is a gift.

but most of all, i'm in awe of all of the margin we've been afforded. it's pretty much a 180-degree shift from our usual life, and as much as we love all of our music and sports and activities and therapies and gatherings with others, this never-knowing-what-time-it-is, nowhere-to-be, party of five lifestyle is working pretty well for us.

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.

growth

when I came back from my weekend away, you greeted me the most enthusiastically of everyone, not to my surprise. you missed me, and boy did i miss you (and your siblings, of course). but your joy in seeing me wasn't the best thing that morning. while I was gone you seemed to grow. not physically, but in your 'you' ness.

between school and therapy and developmental assessments, progress is often discussed. are you progressing on your IEP goals, are you progressing with your fine motor skills, is your speech progressing... yes to all of those, most of the time - you are progressing. what I witnessed the whole day after i returned was different. it was not simply progress.

the definition of progress is a movement toward a goal or stage, where growth is defined as development from simple to more complex, and is described as change in size.

what i've seen since returning is your speech growth: you're giving me so many spontaneous complete sentences, formed solely by your thoughts. you're showing me executive functioning growth with your completion of multi-stepped tasks that were more complex than usual. your focus and self-control is mature in a way i've not often seen for such long stretches of time. your thought process in what you choose to do and how you choose to execute it is deeper in ways that i can't quite put my finger on, let alone put into words.

what i'm seeing right now, ruby, is growth, and it is amazing to watch.

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.

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!!

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.

growing pains

oh adolescence. honestly, we had way more struggles with you in your younger years than we have had during these tween and early teen years, but that doesn't make this 'middle' stage easy. not for you and not for us. it's hard to balance new responsibilities and emerging independence and social changes and academic intensification and sports and music and and and... all the while, your parents just want to pour into you so many things because we see the time slipping away already, and that often feels like 'lecturing' to you. 

you've impressed us with your ability to balance school and everything else. seriously. you aren't perfect, but you're doing a really good job on that front without any hand-holding from us. (that doesn't mean we don't bug you with questions when we see an errant grade come through your test scores, but that's after the fact, and you really do balance it all out so that you still end up with exemplary overall grades.)

you show much maturity in the area of your music, always working to make it a priority in your schedule. even though you play so much at church and with your band, requiring one of us to drive you to and from practices and rehearsals many times a week to locations not near our house, you're usually pretty good about asking (rather than assuming we can work it into our schedule), and it's rare that you don't verbalize your appreciation for that aspect of it.

technology is not our favorite. not by a long shot. after three years, i think we are finally making peace with you having a (very locked down) school laptop at your disposal during the school year, but the addition of a (very locked down) phone in the last few months has been a return to uncharted territory for us. we are working through it, often with glimpses of good choices and emerging digital maturity from you, but definitely with additional heated discussions.

i love love love the moments (sometimes even days on end!) when we know and act like we are on the same team, sharing ideas and highs and lows...communicating calmly and with humility. it's a really cool thing, when your kid starts to really grow up and you can do more connecting than correcting.

then something interrupts that and i am reminded that we in fact are not above the typical teen and parent relationship. instead of working together, suddenly we are opposing forces again that cannot understand how the other could be working towards a goal so opposite of our own.

the butting of heads, when it happens... i'm still not a fan. so many times in the last three years i have seen areas of maturity in you that leave me in awe. maybe that's what makes it so unbearable for me when we don't see eye to eye. there is so much of me in you, and that's probably another big part of the problem. i've still got lots of room to grow and mature myself, but when your words and behavior remind me of my errant ways of the past, it's a bitter pill. 

the good news is, we don't have to have it figured out today, or even tomorrow. but while we figure it out, let's wear the same color jersey, ok? i really like being on your team.

fruition

there are two big things i've very intentionally prayed for you for a few years now. one of those is for you to find a passion. a sport, a hobby, something that pulls at your heart...anything that makes you feel connected and challenged and competent. it has been hard, probably harder for you because i am constantly 'bugging' you about signing up for the school play or for a rec league of a sport. i have been relentless in my attempts to help you find something. and while you have shown me in your awesome desire to work with kids at church that you do indeed have a passion, and a great one at that, i still prayed that you would find something that would help you connect at school or with your peers.

after a few attempts to join sports that required a tryout, i was worried you might meet the same unsatisfying fate with soccer. even though you've played through the years, it's been with a passing commitment to a rec league that meets once a week. (in other words: no guarantee that you could make a competitive team.) but you were awarded a spot on the team, likely to attend practice but sit the bench during games, which is not uncommon for an 'underclassman'.

oh, but Maddux....last week you had four games and you played in three of them. not because the team was short on players (we usually have 6-8 on the bench), but because your coaches gave you a chance. first it was just for a few minutes, but one of the games found you in for almost half of the game. and how you brightened the field. your smile was so big, and it brought you so much joy...

you still have a long way to go to become the leading player in terms of skill level, but so what - you have the time. the connections you are making with your teammates, and the experience you are gaining with coaches that seem to make very smart choices with their players is exactly what I've been praying for. aatching you interact with the other 6th grade girls (and a few older ones), and seeing you encourage and build up those around you, all the while, learning how to push yourself in this sport has been so amazing to watch!

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.

my funny valentine

since the kids were little, we've had dating and marriage conversations from time to time. from an early age we threw out the age of 17 as a good age to be when dating would be an option. (when she was younger, maddux would correctly tell you why: 'because dating is for getting ready for marry-ing, and you can't marry until you're 18.')

as eli and maddux approached middle school, we made those conversations a little more frequent, at least with maddux. (eli seems to be skirting the whole 'girls are cool' scene for now.) she didn't show much of an interest in chasing boys , but we know these things sneak up on you.

this first middle school year found a few of her friends diving head first into 'romantic' relationships. talks of dating and 'liking' boys came up in her circle. we continued to pour 'wait' counsel into her, reminding her that the opportunity to learn from watching her peers would be valuable in the long run, and that shifting her great male friendships into 'something more' often complicates things at this age.

we were chugging along fine until this month. i don't remember how exactly what triggered it, but i knew to ask a few intentional questions today. without much probing, maddux divulged that a (boy) friend of hers had asked her to be his valentine. he did so in a note, but they talked when she gave him her answer. i asked her what that meant and i think we landed on that meaning they were boyfriend and girlfriend. she cautiously walked through the sequence of events with me, likely waiting for me to disapprove. thankfully God was reminding me the whole time to use this opportunity to build trust and bonding...i think i might have not messed it up this time!

the first thing i did was celebrate with my girl, who was obviously excited. i also told her how happy i was that the way the boy asked her and the follow up conversation was so appropriate and intentional. (he asked her himself, in a very sweet note and then they talked in person, rather than being asked through a friend or in a text message.) she even showed me the note at this point (which was proof to me that i was on the right track).

somewhere in there she did tell me she thought i'd be mad because she's not 17 yet. i reminded her that while she and this boy have decided to label their relationship something different than it was prior, they were not 'dating'. (and then i asked her to tell me what dating is: the boy picking you up in a car and paying for your joint activity, AFTER he comes to the house and meets your family.) then i went on to tell her that while her dad and i can obviously influence what she's allowed to do, no one can control her feelings. so her 'liking' someone is a very natural thing and something that she will have to decide how to respond to when it happens. and of course i threw in there that i hope she'll come to me to talk about relationships, like she did this time.

she was so receptive to me, and so sharing with her experience and joy... it was unlike any other conversation we've had surrounding such a big issue or milestone. i was (AM!) so grateful that i was able to keep things in perspective and recognize the opportunity to connect with maddux. (thank you, God!) this is likely a life event she'll always remember, and it feels like she will remember my reaction to it in a good way. you would think this reminder to slow down and really listen to my kids would keep me from pushing them away with my parental 'guidance' in the future...but i'm sure i'll return to my usual ways the next go-round. in the meantime, i'm basking in the awesomeness of today.

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.

Wrestling Championship

Eli's introductory season of wrestling culminated in a Metro 10 Championship yesterday. He ended up wrestling four (or five?) times, and it was pretty much the perfect end for Eli.

All season long, he's been learning new moves, but had only had one win (meaning he scored more points than his opponent and didn't get pinned before the time ran out). But on Saturday, Eli's extra practices over the holiday break proved to be that extra push he needed. His first match was a bye, so it was mid-morning before he finally got on the mat. The opponent was a good wrestler, and held his points higher than Eli throughout, but Eli stayed mentally in the game and didn't get pinned until the final 10 seconds. (There are three rounds, totaling four minutes: 2 min, 1 min, 1 min. It is exhausting.)

This is when I knew something was different. Those rounds were tough; Eli was in a choke hold a lot and he had his shoulder in a less-than-great position a lot. A LOT. (Immediately afterward he told me he seriously worried it was out of socket.) This scenario is one that typically results in Eli anger (out of frustration and pain, no doubt) and some playing the victim. Eli didn't do that. During the match he visibly listened to his coaches instructions. Afterward, he pulled himself together pretty quickly and immediately went to cheer on his teammates. That's another thing that was new. Eli is definitely one to clap for or feel happy for his friends, but he was actively seeking their matches out and loudly cheering them individually in a way I've not seen him do before. Already, my day was made.

Then Eli had a match to determine if he would advance to the top four. My phone was dead, so I have NO video to show, but Eli pinned his man. He PINNED him! He was so excited. I was so excited....it was amazing! From there, he wrestled for 3rd place and won....it was a long match that went down to points (so the full four minutes), but Eli had the points, so he won! Here's where it got even more interesting - since he'd not yet wrestled the guy who was in 2nd place, Eli could challenge him to take his position. This was a kid Eli had wrestled once or twice through the season already, and the two of them chatted it up off the mat, so I already had the warm and fuzzies. (Eli is a little too adversarial for my taste sometimes.) They had a great match, and Eli came out on top, having pinned him. And when I asked him to offer the kid an additional handshake and word of encouragement after all was said and done, he didn't fight me at all.

Seriously. The humility. The joy of competing. The team-player attitude. The determination. There was such a shift in him, in such a positive way, yesterday, and it was so awesome to see. I can't even complain about being at the gym for twelve hours (630-630) because it gave me the best front-row seat ever. And for him to be rewarded with the wins and the pins...icing on the cake. Eli and another team mate both ended up with some hardware for finishing 2nd in their weight classes, and the team had a tremendous showing, especially for this being the school's first full season of wrestling.

Maddux's Heart for Service

I honestly wonder how many times I've blogged about this... I do know that whatever the number, it pales in comparison to the amount of times I take note of it, which is likely a fraction of the number of examples in each day. I know this sounds braggy, but for the oh so many times I get it wrong, especially with Maddux, by pointing out the ways she doesn't do what I think she should do with her time and energy, I want to be sure and document how much right I see in her heart.

I have to remind myself that what I think I want for her might not line up with what God has planned for her.

My girl...she loves, she loves kids, she loves serving kids. Since leaving Kids' Ministry, as a participant, last May, she has probably only attending the 'big' service with us 2 or 3 times, one of those being the Sunday that she was baptized. Every week she volunteers in the Preschool Ministry, willingly. She is now a volunteer that gets signed up about once/month, but whether signed up or not, Maddux reports to the coordinator when we arrive each Sunday and she has never been turned away.

It's not just that she volunteers though. Anyone can do that...even I even do that. But my heart is not in it even half as much as Maddux's is. She loves working with those kids, and not just the fun parts. She will crawl on the ground to pick up goldfish, usher kids to the restroom, pick up mini crayon bits off of the table again and again and again...none of it phases her. I've seen her patiently cutting out a craft for the kids, while carrying on a conversation with one kid to her side, while another sits on her lap, hugging her for comfort. All the while, she is calm as a cucumber and so in her element. And she seeks out the ones who need the most, whether it's manifesting in tears or acting out, she's usually right on it.
I want to be her when I grow up.

About once a month I am approached by an adult at church that works with her for the first time, or maybe just talks to me about it for the first time, and they 'just have to tell' me how awesome she is or what a good worker she is or how great she is with the kids. Sometimes they'll ask me what I did to help her be so great. This is the part where I seriously laugh out loud because I had nothing to do with it. Seriously - she is the nurturer I never was (even at my best). This is all God, growing her gift for nurturing and serving, and it brings me so so SO much joy to be able to watch.

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!

Shadow Monster(s)

First off, this is not a cry for help or even support. I often purge my brain in this way towards the end of working through whatever 'thing' I'm struggling with. Then I post after the fact to hopefully remind other parents that they are not alone...to give them the company that I know I seek when I'm in the weeds. I always want to be transparent on this blog - I try to make this as open a book as possible. I know when I'm in the depths of it, I find hope in reading about other parents who struggled/are struggling in the same way. (Kind of a misery-loves-company meets strength-in-numbers.) And while I am 100% Team Ruby, and a firm believer that we are The Lucky Few, I never want people to think that things are always perfect or good. With all that said, here we go...

Demons. We all have them. Mine are so tricky that they hide in the shadows for extended periods of time, making me believe that I've outrun them only to turn a corner one day and come face to face with them again, usually much larger than they were before. And these demons, they are ugly. They are SO ugly and they expose a broken ugly side of me that I'd like to ignore. I think that's part of what gives them so much power over me; their ability to remind me that these demons are here because I let them be here, because I maybe even create them.

I am realizing that there are times when I realize that I'm still going through the grieving process of Ruby's diagnosis. Not the cancer one; that would be the easy one for me to deal with because that makes sense. Of course cancer sucks (*sucked*); no one would disagree with that. And there was not much I could do about that diagnosis...take her to the hospital and pray. It was out of my hands.

Nope, I'm talking about the Down syndrome diagnosis. Lately I have found myself still in the grieving process of that. I guess it's silly that I might have thought we'd be past it now or something. I love Ruby and the community we're in, but that doesn't mean it's not different than what we expected. And that still hits me out of the blue sometimes: I grieve her not being the child I thought she might be. Which is stupid and crazy because our family is what it is because of (the awesomeness of) Ruby.

I really don't feel like I try to compare Ruby to others, and I know, I preach!, that comparison is the thief of joy. But so many times lately I am hit with a side-by-side that I wasn't looking for and it takes all of the wind out of my sails. Sometimes it's a comparison to a typical child and sometimes it's one in our T21 community. Honestly, I feel like it's so unexpected because we strive so hard to help our kids have everything their typical siblings have in the way of experiences and education. And in that pursuit I think it's easy to forget that sometimes we have to adjust our expectations. At least that's true for me....some of these things that I'm feeling defeat in are things that maybe weren't realistic for Ruby right now, but I forgot that as I got caught up in the attempt.

Let me tell you that the shame and self-disgust associated with acknowledging all of those feelings -  the comparison, the defeat, the self-pity - is currently fighting the crazy grief for top billing in my head and in my heart.

There are still times when I catch myself somehow hoping that certain things linked to T21 are behind us, even though I know they aren't and won't ever be. It's not like she's going to outgrow it, not that I necessarily want her to... But my goal-oriented, selfish side takes over sometimes and tries to expect that we've worked hard enough for *that* to not be an issue anymore. Or that we should not have to struggle with *that* again. (Insert *that* immature or undesirable behavior, or hard hard fine motor or gross motor or speech struggle of choice. I can give you a long list of ones I let stumble me if you need help coming up with one.)

And I'd be lying if I said I never found myself watching another five year old and parent with a deep longing over the ease at which the child plays, dresses themselves, conveys their thoughts, eats, toilets, walks through a store or a restaurant. I have turned into this crazy helicopter mother that I thought I'd left many years ago when Eli was still a toddler. Because I don't know when Ruby will leave the group and not come back. Because I don't know if Ruby will get herself to the bathroom in time. Because I don't know when Ruby will need me to pull her off of a friend that she is hugging so hard that the child gets knocked to the ground. Because I don't know if she is going to get too rough with a dog we see on a walk. Because I don't know what is going to happen next and her actions are ones that her peers will remember long after she's forgotten and I don't feel I can risk her alienating them. Not because we don't work on these things - our list of daily 'reminders' and 'work-on-it' is so long that it makes my head spin.

As a true Type A, because I am so focused on goals and meeting them, all of this stumbling is something that breaks me more than I'd like as of late. There are days when I feel like this paper-thin fragile shell of who I was, of who I want to be because of how easily I'm disheartened. I haven't been in the typical work force in 13 years, so my day-to-day focus is almost entirely the kids. I know better than to measure myself off of my kids' accomplishments or behavior, and I think I do a pretty good job of that when it comes to the bigs. But with Ruby, my daily 'job' is more intense and more involved than it ever was with Eli and Maddux. Or at least it's intense and involved in a different, very different, way. So when she misses the mark on things, without meaning to, I absorb it like a huge blow to my ability. I can't seem to get myself out from under the inadequacy I feel after several of those a day.

I feel like I spend so much time, energy and hope on 'games' and flash cards and research and therapeutic practices that I can use in her everyday life. It's a lot of pressure on her, I know, but she is such a rock star that she performs for me and makes it look like she's loving every minute. That pressure on her also equals pressure on myself. Because if it doesn't pan out, if she doesn't behave in the way I think she should, if she doesn't meet the next developmental stage, my trust in the process is shaken. Immediately I'm filled with doubt of my efforts as her therapist and teacher, and doubt of my ability as a mother. Literally, if she doesn't meet a benchmark, or displays negative behaviors, I mentally make check-lists of things I should be doing instead of what I'm doing. Or I go through her toys and over analyze it's value as a toy that is furthering her or holding her back, developmentally. I don't do this at the end of the month or even the week, but in the moment, which means I'm in 'revamp' mode more often than not. My brain goes into overdrive trying to find 'the solution' (as if there is a solution for any childhood bump in the road). I'm telling you, it get cray up in there!

Hello, enemy. Hello, demons.

I know this is not what I need to be giving in to. I know these thoughts and words are not of God, but instead, against God. And I also know that I am being grown, yet again, stronger is some way. I know that one way or another, this will help me to refocus my efforts and love and loosen my grip. But dangit, it's hard. And hard does not always equal bad. Sometimes hard is just hard. But that hurts. It hurts when I watch the video of her and I on the practice bus ride and see her excited smile as she said, "I like it.", only to have her choose to behave in a way that prevents her from being able to ride the bus less than a week later. It hurts when I see her get so excited to be with friends that she acts in ways that make them not want to be around her. It hurts when we put so much hope into something - anything - only to have that hope dashed. It hurts when I spend a moment marveling in her awesomeness only to step foot on a playground filled with kids her age and feel deflated when I see and hear them effortlessly doing and saying things that are so far out of her reach right now. The highs and lows hurt. That is probably the biggest hurt because it means I have to acknowledge that I am the one making the comparisons. Ugly. Ugly. Ugly.

I apologize that this is all over the place, rambling, and possibly out of order (but, again, the 'cray' of my brain). This is the raw, this is the real.

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!