all grows up

this girl.

even when we might feel a bit plateaued in certain skills or stages, she keeps pushing through to the next thing, simultaneously surprising me and joining her typical peers' milestones.

our ride to school often includes an older friend. most mornings, the two girls exit my car in the carpool line, and our older friend is an extra set of eyes as ruby walks into school. on days without our friend, we usually park and i walk ruby to the sidewalk for the school where i stop and watch her enter the building.

this morning we had no friend in our car and ruby told me she wanted me to walk her in. but by the time we pulled into the parking lot, she was telling me that she wanted to "put on my backpack. get out of car. walk in myself." i confirmed with her twice as we pulled through the winding line, but she was determined.

sure enough, when I pulled up to the front, she kissed me, opened the door and hopped out, waving back at me. i lingered for a few seconds to watch and make sure she was doing the right thing, but i didn't have to: that girl walked straight into school without looking back or getting distracted at all.

so proud.

Open Mic

Last night an abbreviated version of the band Eli is in (99' Corolla) entered the Eddie's Attic Songwriter's Open Mic Competition. If you don't live in Atlanta, Eddie's Attic is a small venue where great talent comes through on a regular basis, whether they are known recording artists or just starting out. (John Mayer was an 'open mic' starving artist here once upon a time.) 

The boys did an acoustic version of two of their songs (each competitor had 10 minutes - there were maybe 20 competitors?). After that, judges chose four finalists to do one more song and then they picked a winner. The boys were one of the top four! 

I can't express enough - the talent present last night blew me away. So many acts from Nashville and Atlanta, and all much older and more experienced than Eli and his friends. The fact that the boys not only held their own, but were recognized as one of the top four is just crazy. I've seen all three of these boys play music in the church since they were in elementary school....also crazy. 

braces

It finally happened.

For a few years, Maddux's dentist had been hinting that once she lost all of her baby teeth, we would likely be referred to an orthodontist. When the last tooth proved to be stubborn, the dentist pulled it and sent us along.

While Maddux wasn't excited about it, she had been aware it was a likely possibility. And once the dentist indicated that her treatment would last 18months, she did some quick math and told us that we needed to put them on NOW so that she could have them removed the summer before she starts high school.

The process took about two hours, and it was relatively painless (according to Maddux). She has 'bumpers' on the back teeth to prevent her from closing her jaw all of the way (thus knocking the front bottom brackets off), but those should come off when she goes for her next appointment. She will likely have bands to help with an overbite, but the process should be straight forward and Maddux is on schedule to have her mouth metal-free for high school.

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.

movies

we own more movies than I can count. they almost never get touched. road trips are almost exclusively when our DVDs get used. I honestly forgot we had such a selection. but this week maddux and lehr are painting the closet where we store the mountains of movies, so they are temporarily housed in the front hall.

ruby loves this arrangement. she has been stacking and sorting and counting and thoroughly investigating them daily since the closet was emptied. she has not seen even half of these gems, so her interest has definitely been piqued.

it has been so fun to hear her reading the movie cases or rejoycing in finding one of her favorites or counting the latest stack she's made of movies she wants to "bring on the airplane for sleepover at grandpa's".

this girl. she is growing and learning and thriving in so many areas!