Friday, October 05, 2018

A Day In The Life

As I've been answering questions about Ruby and Down syndrome this month, a few people suggested I write about a typical day for Ruby. So I chose Thursday, because why not. Last Thursday this was the breakdown of Ruby's day:
  • 6:25AM - Lehr wakes Ruby up. She wakes up easily with a smile and many words, as usual. A trip to the bathroom and the changing out of pj's is in order.
  • 6:35AM - Lehr and Ruby make their way downstairs. Lehr starts breakfast prep while Ruby helped. I get home from my run and make Ruby's lunch.
  • 6:45AM - Ruby sits down to eat her cereal and requires much coaxing, as she doesn't usually like to eat so quickly after waking. (Yes, that means every school day we go through this.) I attempt to brush and fix her hair, which she fights because "I eating!" One or both of the big kids make their way downstairs in various states of dress and various states of grouchiness.
  • 7:00AM - I rush Ruby through brushing her teeth so we can get in the car. Once in the car, we recite the months, count from 1-20, and the rules of school. The rest of the time I ask Ruby many questions that she should know answers to (How old are you, when is your birthday, where do you live, etc.)
  • 7:15AM - I walk Ruby from our car to the school lobby. We meet one of her teachers who walks with her back to her general education classroom. (I return home and make all of the IEP-prep calls and send all of the IEP-prep emails and read all of the IEP-prep articles and studies and examples because it's IEP season which feels like it's tax season and I'm an accountant.)
  • 7:20-8:00AM - Ruby works with her peers on morning work.
  • 8-8:30AM - Ruby gets pulled out for small group (mostly one-on-one) instruction.
  • 8:30-11:00AM - Ruby returns to her gen ed class to work with her peers.
  • 11-11:30AM - Ruby's OT comes into the classroom and works with Ruby during center time, both on 'regular' centers and also some designed to help her fine motor skills (button, zippers, thera-putty, handwriting) 
  • 11:30-12:00PM - Lunch - Ruby eats with her peers.
  • 12:00-12:20PM - Recess. Towards the end of recess, Ruby gets pulled to work with her school speech therapist.
  • 12:20-12:50PM - Speech
  • 12:55-1:25PM - Ruby returns to her gen ed class for math.
  • 1:30-1:50PM - Ruby and her typical class go to PE.
  • 1:50PM - I pick Ruby up in the lobby of the school and we drive to Occupational Therapy. The drive only takes about 25 minutes, so we have a little extra time to kill before our appointment. Ruby eats snack and we talk about her day while we wait. I read through Ruby's school report to find that she struggled with keeping her hands to herself during gen ed work this morning. She also had an 'issue' with a few kids at recess. It's not clear what happened, and Ruby's not a huge help in relaying the sequence of events.
  • 3:00-3:50PM - OT - Ruby works on a laying down swing, for balance, pushing herself on her stomach by using her hands, which targets her shoulder muscles, writing on a wall board for better finger placement, thera-putty to work the fingers, crawling through an obstacle course to help with torso/upper body strength, and finally throwing a ball into a bowl for focus, accuracy and arm strength.
  • 4:00PM - Ruby and I drive to the middle school to pick up the big kids. She 'reads' in the backseat until we get there. We have 15 minutes before XC practice is over, so we sing a few school songs and go over our sight words.
  • 4:30PM - Eli and Maddux (and a few other carpoolers) enter the car and it's a loud crazy drive home. 
  • 4:45PM - We get home and Ruby's speech therapist pulls in behind us. She works with Ruby and I on EVERYTHING from tongue placement to sentence structure to working independently...this therapist is my 'glue', as I referenced on FB this week.
  • 5:15PM - Daddy comes home and sneaks upstairs to not disrupt Ruby's focus. (Good man.)
  • 5:45PM - Our therapist leaves and I start dinner. Ruby alternates between playing and helping me cut vegetables. Once dinner is cooking, Ruby and I go over her sight words a few more times. Then we work on a few worksheets for practice. Dad and Eli leave for soccer.
  • 6:15 - The girls and I eat a quick dinner. Maddux and Ruby play while I put away the dishes. The girls end up going to their room and getting into the dress-up stuff. As I'm working in the kitchen, they come down three times in three different outfits. Great for practice putting on and taking off clothes - not great for the state of their bedroom floor.
  • 6:30PM - Maddux works on homework and Ruby and I pull out the Manga-Tiles and work on pulling them apart and differentiating color and shape. 
  • 6:45PM - The girls and I go out front to play. Maddux hangs out with friends while Ruby and I play with the tee, bat and ball. Again and again we work on swinging and hitting the ball. Then we pull out the 4-square ball and practice bouncing and catching. It is not something she has down yet, at all.
  • 7:10PM - The girls and I go inside and head upstairs. I give Ruby a bath while Maddux works on homework again. Once Ruby is out, we brush teeth, use the bathroom, and change into PJ's. No nap in the car today, so my girl is exhausted and will likely fall asleep during the first book.
  • 7:20PM - Ruby and I snuggle in her bed and I read a book to her. Six pages in and she's cross-eyed. I'm out of her room in five minutes.
  • 7:30PM on - SNOREFEST
Not the most exciting account, but a good reminder that Ruby's days look both very similar to any other child's, and also very different. In general, she has the same structure, but how some of those time slots are filled can be different.

The best way I can describe it is that Ruby rarely has a wasted moment. While she sees it all as play and loves the one-on-one time I give her when we are working on the many skills we need to work on, Ruby rarely gets a chance to just play: it's all very intentional. Chalk becomes a game of testing her for colors or body parts, card games are used to work on her number awareness and same/different/matching concepts, kitchen play can double as speech with the many items to identify and 'commands' she gives me, story time is a full-circle opportunity to ask questions about the story, point out colors or shapes, count objects, and recognize sight words. Ruby works hard, all day every day, just to try and bridge the developmental delay gap. And yet she dances through it like it's the most fun thing in the world.

Monday, September 03, 2018

Leader In Training

Eli has long been one to tag along with Lehr during worship band rehearsals at the church. When he was a wee one, he would tag along and the older boys would tolerate play with him. When Eli got a little older, he would play drums with some of these older boys, and in recent years, Eli has joined some of these 'elders' at youth group and in the youth worship band. If you ask Eli, he will probably tell you he considers some of the 16-20 year old crowd more 'his people' than the ones his own age at church. That makes sense considering he spent a week with some of them serving at a camp last summer, and he spends countless hours each month in rehearsal with most of them.
Recently the youth group has started promoting a Student Leadership Team, to get some of the more seasoned and involved youth to work together to connect with and involve other youth in various ways. I love that Eli signed up for this team before even consulting us. We've always told him that while he has always benefited from having someone 'ahead' of him investing in him, he can (and needs to) turn around and do the same for someone younger than him.
Fast forward to this weekend when Eli's college friends wanted to make a video promoting Youth Sunday at our church. (This is an annual 'thing' where the youth run the show in the worship band, the sound controls, the lighting and production, the greeting and parking team...everything.) Eli and I brainstormed a few ideas and then he spent the day with two cool 'kids' making this video.

Saturday, September 01, 2018

Cross Country

Maddux and Eli are both running this season. Maddux was not very thrilled to start this sport, but she's made some good friends in the process, and (I hope!) learned something about herself. (Mainly that she is fast when she wants to be and she can do more than she thinks she can.)
The kids have had three meets so far. Eli has improved his time significantly from last season, and bested his time on a few courses. Maddux has scored for her team (only top 5 score), and she's improved her time as well.


Thursday, August 30, 2018

Go West, Young Man

This was a big summer for the big kids. We sent Eli and Maddux out west to see my parents and brother's family just before school resumed.

On an airplane. By themselves.

They did great, traveling together, and enjoying the spoils of having the head flight attendant watching out for them on their flights. And once they arrived, they lived it up for a full week with Grandma Cathie and Grandpa Jim. They spent almost all of their time with Uncle Jay and Aunt Ingrid and all of their cousins. They golfed, boated, paddle boarded, swam, kayaked, watched movies, went to an amusement/water park...the list was long.

Eli brought his go pro camera along and documented the whole trip, putting together this great video when he returned.

Monday, August 06, 2018

Onward

Today I came face to face with the reality that my bigs really are big. Eli and Maddux started school today, meaning they are both in Middle School.
Obviously I know this, and have known this, but seeing them both dressed in their chapel uniforms this morning, Eli with his newer haircut that makes him look like a cool teenager, and Maddux with her long legs and maturing face, it really hit me. Actually, it really hit me after school when they came in with their backpacks and laptops and cross country clothes, all sweaty from practice. They looked at least as grown up then, and they were so mature in their download of their respective days. Even better, they were getting along! It's like putting them in the same building actually helped their relationship, even if just for one day! They were totally talking and exchanging information about their day(s), respectfully and kindly. It's a first day of school miracle!!!
Maddux enjoyed her first day of 6th grade, meeting new friends and briefly connecting with a few she's met in the last week. Eli has lots of friends in all of his classes, which isn't a surprise as the small school allows you to know everyone (thus making them your friend). I was able to attend the first day convocation, which culminated in me getting to pray specifically over Eli before he started his day. That was awesome and something I hope he thinks was awesome too.

Sunday, August 05, 2018

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 have 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.

Tuesday, July 31, 2018

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!

Friday, July 27, 2018

GiGi at GiGi's!

Ruby and I spend a lot of time at GiGi's Playhouse; it's our go-to spot most Saturday mornings. And GiGi's wouldn't be in Atlanta if it wasn't in Chicago first, where GiGi's mom had the brainchild to create such a cool space about 15 years ago.
Fast forward to last week when we got an unexpected visit from GiGi and Nancy Gianni at both our Atlanta area GiGi's locations. Ruby and I were unable to meet them at our regular GiGi's, so we made the trip to the 'new' GiGi's the following day.
The pair was so outgoing and jumped into the kids' play right away. (LOTS of Ruby's friends were there that morning.) Ruby and I got Nancy's book, and GiGi signed it for us! And then I had to get a photo of Ruby and two of her buddies that she met at GiGi's the first two times she and I visited.

Tuesday, July 17, 2018

Absense Makes a Heart Grow Fonder

Not that it's possible for Ruby to be more fond of her siblings, especially Maddux, but two long stays away has made her miss them a lot.
Last week the big kids went to an overnight camp for the better part of a week. Ruby kept quite busy with her own camp at GiGi's, but was super excited to see them return for the weekend.
Unfortunately, this morning they left again, this time for a full week to see Grandma and Grandpa. We didn't talk about it too much beforehand, but apparently Ruby got it from the little mentions we'd made. They woke up, ate, and played fine, but when Maddux said, "OK, Ruby, I have to go now." Ruby burst into tears and sobbed in Maddux's arms.

She adores her big sister!

Saturday, June 23, 2018

VBX

Yet another fun VBX in the books. As we are in the year of many transitions, this year's VBX added another 'new' experience for our family. While Lehr was still in charge of music, and I was mostly behind the camera, and Eli was playing drums all week, Maddux joined the volunteer ranks and Ruby attended as an official camper for the first time!
When we first talked to Maddux about where she might want to volunteer, she said she wanted to do the motions on stage, for sure. That was a no-brainer, as many of the youth do that in addition to their other roles. However, last summer Maddux was exposed to a song that she knew would be great for VBX. So we kept it in our pocket all year and when it came time for Lehr to pick songs, she campaigned hard for "Royals". It worked and Lehr chose it, but what was even better is Maddux and I worked together to come up with the motions for that song. She took a lot of pride in it, and was even able to help out the volunteer in charge of teaching the dances. So fun!
And it should come as no surprise that Maddux chose working with a group of kids as a 'group guide' as her other (main) job. Also not shocking was that she wanted to help in Ruby's group. This was perfect, as we were not sure how to ensure a successful camp for Ruby without one of us present.
But without us even mentioning that to Maddux, she stepped up. (In the end, Lehr ended up working with that group as well.) I loved seeing Maddux help the kids in her group - while she was there for Ruby, she gravitated towards two other little girls more often. She has such a beautiful gift!
Ruby had a great time, eating and playing with her friends. Maddux had a blast, dancing and getting to know new kids in the youth group and 'guiding' her kindergartners. And Eli loved playing drums and working with two of his 'big' friends as a water boy.