Wednesday, September 21, 2016

The Space We're In

In the blink of an eye. Expectant parents hear it over and over from those who have gone before them. And it rings true for every stage from the nighttime feedings through college. Never have I been made more aware of that than this fall. While I've noticed Eli and Maddux growing up, and I've seen some 'stage-passing', I suddenly find that we are in a stage that I didn't even realize was so close.

In the last 4-6 weeks Maddux has started 4th grade which has proven to be a pivotal year in our house. She has more homework (not necessarily in a bad way) than before, her classroom responsibilities (independent of family support) has increased, she has freedoms at school that she didn't before (pre-school day activities and recess activities that foster some Independence and choice), and she is staying after school two days each week for various activities. All of that in addition to soccer, which we were overjoyed to find out she wanted to try again.
At the same time, Eli started middle school and its obvious new stage. He's got way more work than before, and I don't even know about most of it, he carries a laptop throughout his day (heavily monitored by the school), he participates in two after school activities meaning Friday is the only day he comes home before 5, he is involved in baseball again, but in the second to last tier of the league (aka BIG kid ball), and he is participating in band.




Sound like a lot? It is! We didn't intentionally get to this 'lot' place...Maddux has been less than enthusiastic about a sport or extracurricular for the last few years, so this fall we decided to not push a team, but instead to try two 'FAST' programs so she could try something on for size with very short commitment. She opted for a running club and a chemistry program. Then, after those had started, she started speaking up about soccer. We did what we could to get her on a team, but this now meant two day/week practices in addition to FAST. The girl is handling it like a champ so far. She is LOVING soccer and thriving at it, and she seems to have a flair for running; she currently holds the #4 fastest girl in the school title for the mile run.
Our rule has always been one activity at a time for each kid, but with Middle School comes school teams and activities that require less commitment from the parents. And I wanted to encourage Eli to try all of this cool new stuff that was available to him. He is always up for that kind of thing, so he hopped into Cross Country two weeks before school started. He runs 2-3 days each week for practice and has 1-2 meets a week. The meets require driving, but the practices are right after school on campus, so it's 'easy'. Robotics just opened up and Eli signed up. Only one meeting each week, but again, it's easy. Now he's talking baseball (for the school) or swim. And of course he's playing a team at the same league he's been involved with since he was 4. But this baseball team is so different. The boys are so big and the rules are getting very 'real'....it is amazing to watch! Oh yeah, and Eli needs a ride to and from school each day.
So this 'lot' requires much coordination on our part. My logistical gymnastic ability (or lack there of) is being tested daily, and I am ever grateful of the village around me that allows for carpooling and kid shuffling. This fosters some Independence from my kids as they are in and out of other families' cars often now, hopefully being gracious and courteous. All of this 'lot' of school work and activities has quickly become the new norm and I couldn't be more proud of Maddux and Eli for how they are handling it. Grades are not perfect but really good, and through minimal nagging and/or assistance from us. These kids are growing up and becoming responsible in ways I didn't even know I could expect of them yet. God is good.

Tuesday, September 13, 2016

Paving The Way

No time for fancy things like editing tonight...busy week. 

Ruby has speech at Maddux's school every Tuesday. Luckily, her start time allows Ruby and I to pop in to the lunchroom to see Maddux for a few moments before her speech session starts. Most of the time it involves us walking to Maddux's table, giving a hug and leaving. However, that takes no less than five minutes because on the way to Maddux's table, about six kids stop and wave or hug Ruby. Then when we get to Maddux's class table, the girls swarm. I mean swarm. Only one or two of them know her from outside of the class, but the rest are basically strangers that just see her on these lunchroom occasions. (I don't know about 50% of these girls.)

I go back and forth in my head about if I should continue to bring Ruby into the lunchroom, as it's a bit of a disruption sometimes. However, this week I vowed to not stop until asked because the impact for everyone is too important. I realized as I watched the girls take turns hugging Ruby this afternoon that with each hug, Ruby became more alike than different in their eyes.

Of these girls, we only know of one who knows about Down syndrome because Maddux 'taught' her in her on World Down Syndrome day last year. Maybe a few of the others have some idea, but none that Maddux could confirm. In fact, at least one of the girls has no idea that Ruby 'has' anything.
So the way I see it, these girls getting to dote on Ruby for 20 seconds each week gives them a connection to her. Hopefully that connection makes them able to connect with someone else who might look or act 'scary' at the playground or at church or in a future classroom. And wouldn't it be cool for the parent of that child to walk into a situation where their child was welcomed and included immediately?

I know that is one of the things I am most anxious about as we enter a new social situation with Ruby (everything from a new class to a random day at the pool): how will the other kids react to her? I am painfully aware that I will become more anxious with time over this issue because kids will grow more aware of differences as they mature, and the developmental differences between Ruby and her peers will continue to grow.

So disrupt the cafeteria, girl. Let your light shine bright.

Saturday, September 10, 2016

Different Sides of Ruby

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

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

The report was generally good, but nothing on this road comes without bumps. Ruby is not using her words in the classroom. At all. That is frustrating to me because she is such a chatterbox at home. And because Ruby does not show me any signs of shyness, I just assumed she was talking (in her own way) to the other kids and in general. It makes me sad that they haven't been able to see that very curious, very social, VERY talkative side of Ruby. Another thing our therapist addressed is Ruby not initiating play with others on the playground...in fact, it sounds like she just plays by herself most of the time. That is a really tough one for me, since Ruby is so social anytime I see her with other kids (not at school). The good news is our therapist helped facilitate some interactions on the playground that went very well and hopefully helped Ruby realize she has to talk to the other kids (like she does to me and her siblings when she's playing with us at home).
The different sides of Ruby...I had no idea she had this one that is showing up at school! It's so crazy to me to think of this playground side of Ruby, especially when a day doesn't go by that Ruby isn't continually tugging at my hand to 'ccccc-ooommmm' with her to play with the doll house or her kitchen (initiating play). A day doesn't go by that she doesn't play with me or Maddux using as many conversational imitations as possible (the 'talk' is incessant). We are very hopeful that a few more facilitated playground visits will find Ruby and her classmates initiating play together during these times, so that they can see the Ruby that we see.

Thursday, September 08, 2016

ABC's

Speech updates to follow, but here is an example of one of the ways Ruby and I work on speech each day. Today we used plastic letters to practice our alphabet recognition, but sometimes we use flashcards of animals or objects, sometimes we use small plastic animals....whatever works! This day also found her not in a chair, hence the very busy back and forth. So many times when I work with her we are in a chair to keep her focus, but sometimes we incorporate moving across the room to put things in another area (couch, bucket, etc.) to incorporate following directions AND movement (which is her favorite part).

LONG video...no edits.

Monday, September 05, 2016

Dancing Queen

This post is from months ago (check the hair!), but I had a hard time publishing the video which is vital to the context! She has since added many songs to her list of favorites...I will get more video soon!

This girl loves music, loves to dance. Just like her brother and sister. Even more though, she has her own favorites when it comes to music, and it often surprises me which songs she leans towards. Ones that get played around the house while we are dancing or in the car while we roll down the windows and rock come as no surprise. But other, more random ones (like "Hello" or "Bad Blood") that don't get anything other than occasional radio play, are less expected.

201605RubyDance from Nicole Eliason on Vimeo.

Friday, September 02, 2016

Therapy Update

As I've said before, gymnastics is our only official PT these days. Ruby still loves it. Stays with class and gets help from the teacher when needed (but does lots on her own too). We use the short balance beam in the backyard to help Ruby with her balance and core strength often, and she loves to climb on all kinds of playground equipment. She's running...yes, running...all of the time. Still not jumping with two feet, but we'll get there!
Speech! Ruby currently has three speech therapists. The school system every Tuesday, and Thursday is alternating with myofunctional (more correct lip/tongue placement for sounds) and regular speech. She is stringing more words together, "Thank you, mom", "More water, please" and the likes. She will also put two of those together: when she sees one of the kids or Lehr walking towards the garage she will say, "Bye, Eli. I love you." She is also commenting on her environment more and more daily. Ruby will see something or point to something, look at me and tell me what it is. Her favorites are umbrellas, airplanes, and babies.

Friday, August 26, 2016

School Update

We started school for Ruby, finally!
 It's been a GOOD two weeks. She loves loves loves school and smiles and claps when we pull into sight of the building. I have been checking in with her teachers when I pick Ruby up, and this is what they say:
  • She nods yes or no but is 'quiet' at school. That is shocking, since this girls is chatty and loud at home.
  • Ruby gets along with others while playing in the classroom, shares AND takes toys away (typical for this age).
  • She eats snack and signs/says more.
  • Ruby GOES POTTY!
We are excited to already have two consistent weeks behind us!

Sunday, August 14, 2016

Doldrums

Another late night start to this post, followed by many revisits during times when I was struggling. Because of that, my words are less guarded or filtered than usual. These thoughts and emotions captivating my mind, my heart, more than I would like are very raw. Almost like a raw onion: so pungent that while on this train of thought my eyes are flooded and so bitter tasting that I recoil.
And before I get into it, I know... I really do. I know Ruby is awesome. And I know I am extremely (EXTREMELY) blessed. And I know there are worse things. Heck, we just finished beating cancer...I should know better than to feel anything other than grateful for each and every minutia of this life. But I'm human and often times that means I suck at letting my imago dei shine. There is nothing you can say to me about these skewed thoughts and feelings that I don't say to already myself: selfish, greedy, missing the point, whiner - I cover them all daily.

So even though I'm all kinds of stubborn and stuck in the bad mood I've created, I'm thankful that I have a patient God. I'm relieved that He is bigger than my tantrums, and I am grateful that he will love me even when I throw them. Which is good, because this one is a big ole tantrum and it's lasted a long time.

The truth is that I have been spending most of my days faking it as of late. And the problem with faking it is when you run out of fake, there's nothing left. And, if you're like me, that faking it makes you mad/sad that you feel you have to fake it. Doesn't matter that you're mad at yourself, anger is anger and it isn't very becoming.

Because I pick everything apart in my brain and over-analyze it to a fault, when I'm talking to myself about why I'm in such a state, I try to walk through a day and find emotions tied to events and interactions. My hope is that I can find correlations to help me root out the cause. What I find is that the times when I get to spend one-on-one (or even two-on-one sometimes) with Eli and Maddux are usually non-faking, good times, even when those times include correction or mundane tasks. The times when I'm at home working with Ruby and she is giving me her all are good times. Top of the world good times. The times when I leave our safe house and measuring sticks are all around Ruby and I, those are the bad times. The times when I'm working with Ruby and her focus is anywhere but on me, or when we are having a really bad day with integrating and inclusion, those are the dark times.

That over-analyzing takes you down a path regardless of which way it's pointing. The good path is paved with highlights of real connecting time with the kids or milestone-reaching by Ruby. And I know that the path is paved that way because I'm viewing things differently on those days; I'm seeing the good all around me and noticing all of the amazing ways God is loving me.

But the bad path...it's a dark one. A bad focus day for Ruby reminds me of the bad therapy session the day before which reminds me of the less-than-positive event recounting I read from a mom of an older child with T21 which reminds me of the last park day we had when I had to keep Ruby within reach at all times so she didn't push any kids. A day that finds me getting after the older kids points out that I have no patience left for their mis-steps or learning curves which points out that I'm not allowing them the space they need to make mistakes which points out that I'm mean and snappy with everyone in my family. A day where I spend all of my energy watching Ruby's every move to see if she may be trying to tell me she needs to use the bathroom reminds me that we are using our time, ALL of our time, for potty training and not speech or PT or OT or (gasp) something fun. And that stresses me out so that when she has an accident (or rather, multiple accidents), everything crumbles for me because so much is tied up in the daily effort.

Getting ugly here.

All of that weighs. It weighs a lot to have so much of my day consumed by research and speech drills and attempting new skills that kids younger than her have already mastered. It weighs a ton to have spent almost two months on potty training already but still be required to send her to preschool (and speech and gymnastics and anywhere I'm not within 10 feet of her and can deal with an accident) in a pull-up. (And when I say we've spent two months on it, I mean she's in underwear 24/7 when she's with me and our days are FULL of asking her countless times, taking her almost as many times as I ask, running to the bathroom or the back of my car where the portable potty is no matter what errand I'm in the middle of running and still having her have up to four accidents every day.)

And it's exhausting. It's exhausting to wake up and put on a positive face and tell myself, "Today, THIS will be the day she gets it." (Insert whatever 'it' that is heaviest on my heart.) It's exhausting to never stop looking at my phone when she's at school because I'm convinced they are going to call me about an issue. It's exhausting to watch her gymnastics class like a hawk because I'm not in there with her but do I need to go in and help Ruby follow directions better? It's exhausting to be reminded every time we are around any toddlers how little she is able to communicate compared to those younger than her. It's exhausting to hold my breath constantly waiting for something to happen that would exclude her from an activity (like not being potty trained, like biting or hitting, like not being able to keep up with her peers). Because, let's be honest, the magnifying glass of scrutiny is going to be on her more than other kids when she misses the mark. So I sit waiting for the other shoe to drop.

I've also come to realize with school starting that my sad/mad is coming from a different place too. I want more big kid time with my big kids. I need it and I pine for it. Not over-the-top fun time, just big kid time being 'big' together. Enjoying a big person movie with them. Hiking a long distance with them. Taking them to paint pottery. Running errands they'd like to run with them (and not a cart). Sitting on the back porch after school and having a leisurely snack and chat with them.

So that takes me back about four or five years....I was on a track with families around me. It was a track heading to a place with predictable milestones including sports and sleepovers and middle school. These families are still on that track, yet our track was interrupted. I see them sitting on the sidelines at a practice, chatting with their other kids, just enjoying hanging out, on that track that is moving forward. I see them volunteering in their kids' classrooms with the precious moments they have carved during the day, moving forward. And I see our track slowed to a crawl.

It hit me that this was consuming me from the inside when I heard a mom in Ruby's class as she looked at the birthday wall. She pointed to Ruby's name and said, "That can't be right...that would make her too old to be in this class...the cutoff is 34 months". And I hung my head and bit my lip to keep from tears, because that's how tightly wound I was. When a random innocent observation can hit me so hard, there's a problem.
The truth is, I am jealous. Jealous of her rule defaulting ignorance to a child that might warrant bending the standard rules. And I'm jealous of the mom who doesn't have to hold her 30lb toddler in one arm while she signs the credit card print out at the doctor's office because her 2-year old can stand next to her for one minute without running off or lying on the ground. And I'm jealous of the mom of a tween who leisurely walks around Publix, not having to push a cart and incessantly talk to their toddler about every color or item on the shelf to reinforce speech. I took Eli to buy a new pair of sneakers after dinner recently and it felt like the most relaxing, most rewarding 30 minutes of my day. We walked into the store, spoke to an employee, tried on and tested a few pair, and left. Selfish to not want to deal with 2-man coverage while in a store? Sure. But it was amazing to be able to enjoy my son's growing maturity, even in the small moments and that's what I'm missing right now.

Here we go...it's all 'woah is me' and 'my life is so hard'... I know what this sounds like. I chastise myself for it often. Especially because we chose this. We knew having another child would put us a little further back on the track for a few moments. We knew adding a baby to our growing-towards-Independence family would mean taking a step back. But I get stuck on the reality that those few moments are going to last longer, and that step back has not been followed by catching back up with the pack. We aren't just a little behind those we were on a path with, we are now on a totally different path altogether. And this hiccup in our planned path, MY planned path, is something I find myself getting frustrated with. The stationary movement that our house churns through daily causes me to feel beat down. Like I'm on a treadmill of therapies and exercises and repeated passes at skills.

So I get mad. And sad. And tired. And frustrated. And and and. And I KNOW it's my lack of faith that this is part of God's plan and He will see me through it. And I KNOW that I'm not choosing joy when I get this way. And I KNOW 'it's not about me'. And I KNOW great work is being done in the midst of what I often wish wasn't present. But knowing those things and accepting them, truly embracing them, are polar opposites for me these days.

And right now the potty training hits me the hardest. I might be doing fine with everything else, and then out of nowhere spiral downward because I discover, yet again, that Ruby has wet her pants with no indication to me at all that she had to go or did go. And with every accident throughout the day I feel another nail in this cement coffin of self-doubt and pity. Total ridiculousness and indulgence, I know. But even the truth about where those insecurities come from don't make the feelings any less real.

So I pray. And I question what He's doing and why He's choosing this path for me. And I have to remind myself that this, this reaction of mine, is part of my answer: because I struggle with it so much. But I still fight back and dig my heels in. And when I do this I realize that I'm not done grieving Down syndrome.

I feel like those of us living in the range of special needs are constantly having to readjust expectations. And that means a level of repeat grieving. Grieving not being able to tell ourselves with certainty: 'it's just a phase'. Grieving the comfort of falling back on the knowledge that s/he will get it, because certainly s/he won't wear diapers/not feed her/himself cleanly/still not be able to successfully state her/his name by the time s/he goes to kindergarten. Grieving the hope of a strategy working when the reality of support needed for her/him to succeed is unavoidably obvious.

I feel like I say it all of the time, but it bears repeating (if nothing else, to myself): Ruby has allowed us to be on an amazing journey that brings way more joy to my life than I could have ever imagined. But it's not what I'd expected or planned on, and there is grieving for that plan along the way. When I feel bogged down, I play the selfish and ridiculous game of 'what if' or 'what my life could look like'.

What I'm learning (SLOWLY) is that this struggle is revealing my entitlement. My feeling that I should be past these parts of my parenting life. I should have more 'big kid' time with the big kids. Ruby should be able to go to school/gymnastics/soccer/a playground without crazy preparation on our part. I should be able to teach/train her better than I am. I should be in a different stage of parenting.

 And when all verses I lean on are falling on my deaf ears, He leads me to this a few days ago:

James 1: 2-4   Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. 

And duh. I know this, but this time, when I see this verse for the first time, I hear it a little clearer.

So I keep reading:

James 1:5-8  But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him. But he must ask in faith without any doubting, for the one who doubts is like the surf of the sea, driven and tossed by the wind. For that man ought not to expect that he will receive anything from the Lord, being a double-minded man, unstable in all his ways. 

This is not a feel good post. I'm not tying it up with a pretty bow and saying "The End". These verses are amazing, but I'm still struggling with them. In the meantime I'm thankful that I have a patient God. I'm relieved that He can handle my tantrums, and I am grateful that he will let me throw them.

Wednesday, August 10, 2016

In The Clear

Another monthly check-up for Ruby at the AFLAC Cancer Center, and another clean bill of health. This one was a milestone visit as it marks 6-months, and with it comes two great changes for Ruby. No more meds on the weekends! (She doesn't mind taking them anymore, but anything we can do to distance ourselves from cancer is welcomed!) Also, we no longer have to go in every month; now we are on an every other month cycle.
Hooray for continued health!

Monday, August 08, 2016

Middle School Start

How did we go from here
to here
in the blink of an eye?!?

Eli started Middle School today. As in laptop-carrying, locker-having, class-changing middle school. Last week he was sure to rub into Maddux and his younger friend, William, that he did NOT have to be at school yet even though they did. However, he had a full morning of technology training one day, a conference with his home room teacher one day, and cross country practice most mornings. This was all pretty cool to me because it allowed him to be very comfortable on the campus (and in the building) before day one.
Thankfully, Eli was assigned a lower locker; had he received a top one, there is no way he would have been able to reach to unlock it. His schedule will keep him quite mobile this first semester, as he has to travel from the 3rd floor to the 2nd floor to the gym (across the parking lot), back to the 3rd floor, then down to the basement. This afternoon he told me he likes Middle School better than Elementary School because of all of these transitions. I think it makes him feel independent and grown up.

Eli is taking band this year; instruments have not been assigned yet, but he's hoping for a brass horn of sorts. Eli is also taking Latin this semester. He has his first test next week, so I was using flashcards with him tonight to help him study. Before we started, he gave me a quick tutorial on how to use flashcards. Bless his heart.

Cross Country is something we discussed last year and I'm so glad he still wanted to join by the time school started. This was another 'before the first day' thing for him; they have had voluntary runs for the two weeks leading up to the first day. Eli has been logging about 8-10 miles a week.