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!

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.

Sunday, June 17, 2018

My Happy Place

Today was a good day. Like, a really good day. The big kids weren't even with me very much...what made it good was what they were doing while out of my house.

Maddux is in the summer of transitions. She's about to start middle school which means new opportunities with church and sports and youth group... so much at once! Regarding church, she gets to attend FUEL (the youth group for 6-12th graders), but she is also without a 'class' during the actual church service each week. When Eli is not playing in the band for the elementary kids' service, he sits with friends (or us, if we're lucky) in the big service. Maddux has already found a home, serving in the preschool area any time they will let her. Since we are always short on volunteers, they let her every week! She has such a heart for kids, especially the little ones, so she loves doing this. I asked her last week if she would ever come sit with me in the big service and she kind of wrinkled her nose and said, "Maybe one week, but only if we were here for both services so I could still work with the kids." Not at all a shock since anytime I try to find her at church, she is under a pile of kids on her lap, reading books and engaging them in songs.

Today my girl served with some littles (maybe 2-3 year olds?) alongside a family friend. I didn't know the friend was in there with Maddux until she ran up to me after the service. She could not stop raving about Maddux and how great she is with all of the kids, not getting frazzled when they are upset, but instead calmly meeting them where they are. She reminded me of all of the amazing ways God has blessed Maddux with the gift of serving others. "It was an honor to work with her today." There are so many times I see her with Ruby and think the same thing...
Maddux does not get this from me: our social IQ's could not be further from one another. I honestly feel it is an absolute God-given gift, the way she is able to connect with people and make them feel at ease. I saw it last week also when I drove her and a friend to camp each day. Maddux and her friend hadn't had many opportunities to hang out in many months, so I wasn't sure if the conversation would flow on the first day. But Maddux never missed a beat, sitting in the middle seat with her friend instead of the front (as she would prefer), asking her friend all kinds of great, specific and intentional questions about her summer, helping her to feel comfortable. I seriously drove the whole way with my jaw on the ground, in absolute awe at her social ease and intelligence.

On to the boy... It's no secret that music is something Eli loves. He's been playing drums since age two, and he's picked up the trumpet and guitar in the last two years. Even though he only started with the electric guitar just over a year ago, it's where he spends most all of his free time these days. This week he was listed as the lead guitar for the Sunday morning kids' services for the first time. He was SO excited. And when he went to rehearsal on Thursday night, Lehr said he was shocked at how well he had prepared himself and how well he played.
So this morning, Eli was at church by 7AM, rehearsing and then playing guitar in two services. Then he returned to the church about an hour later to set up and rehearse for the next week's camp. (At this camp, he'll be playing drums with another worship band.) In total, he was at church for about nine hours, worshiping with two different instruments and two different bands. His passion for those instruments right now is impressive. And in a house where music is king, it warms my soul to see him working so hard on it and holding his own so well.

Sunday, June 10, 2018

School of Rock

Ever since Eli was a wee one, Lehr and I have seen advertising for a music camp in our area. The "School of Rock" offers lessons and camps, and appeared to cater to the less traditional music education (which we loved). Between the cost and wanting to make sure he was old enough to really get something out of it, this is the first year we signed up. As expected, Eli chose to sign up for the camp with his electric guitar, rather than drums. What's better is his best friend, Drew, decided to join him (on guitar also) at the last minute.

The boys had a good time through the week, learning some classic rock songs on their guitars. Eli dabbled a little in bass, mainly because they needed someone and he could adapt his skills quickly enough. The week culminated in a concert, showcasing maybe 5 or 6 songs, completely performed by the kids from the camp, including, "Another Brick in the Wall", "Satisfaction", and "Another One Bites the Dust".

Eli enjoyed himself, especially because Drew was there, but we were reminded (again!) how blessed Eli has been to have so much experience already playing with a band (of adults or kids) consistently for the last several years at church. He's able to prepare at home and walk into a band situation, ready to play and work together to make necessary adjustments. This camp is a great way to provide that learning experience for kids, it is just one that Eli has been fortunate enough to have had already.

Saturday, June 09, 2018

Gigi's Gala 2018

If you know our family, you know that we love Gigi's Playhouse. Since Ruby was born we've visited the Atlanta location several times each month, if not weekly. We've met friends and therapists there that will always have a special place in our history - in Ruby's life, from John and his therapy dog, Owey, which Ruby saw often for a while before she started school, to Ruby's peer, Norah (and her mom and her siblings), who we still see at least once/month.
As a free facility, fundraising is necessary, and the biggest fundraiser of the year is the Gigi's Gala. It is an all-out, black-tie, fancy schmancy affair that is unlike anything I've ever been to before. I've helped with the photography side of it for two or three years, and last year Ruby got to attend the 'cocktail hour' with Lehr. She LOVED this last year, as she got to hang out with a volunteer and dance and play, with Daddy as close or far as he felt comfortable.

This year they upped the ante on us: I shot it, Ruby and Lehr attended, and they asked me to speak. While the attendees of the Gala have a connection (and some funds to share), they are not typically people I see at Gigi's, so I got the idea that having me speak was a way to share a 'real life' Gigi's family.

While it was a huge honor to be asked, I've never given a speech before, especially not to a more 'civilized' audience. (I give speeches to my kids every day, if I'm honest, but those are more of the rambling kind, if you know what I mean.) I wrote my speech, had someone proof it for 'flow', and then practiced talking through it endlessly in front of Maddux and in my car. For weeks I would dance around the words, trying to find the best phrasing and cadence.
The night of I was scared to death, and my last minute practices in the restroom were not going too well. But when I took the stage it became a bit of muscle memory and I was able to wander through my speech, ad libbing where I needed to and hitting the points I needed to. I only had to look at my notes once (the same spot that always made me pause when I was practicing)! It was an amazing experience, to be asked to move way outside of my comfort zone. I so enjoy connecting with families, new and 'old', and helping newly diagnosed moms when I can. But to speak so broadly and formally was scary, so I was incredibly humbled to be met by numerous attendees (in tuxes and fancy gowns, no less) after I got off stage. They wanted to thank me and shake my hand and compliment my speech and presence. It was surreal.
Lehr and Ruby left almost an hour before I took the stage; we both knew pushing Ruby to 'behave' until 9PM in that overstimulating environment would be pushing our luck. But I reminded him that his presence would have probably made me even more nervous. (A good friend pulled out her phone and caught the speech on video for Lehr, and of course I have my notes.)

Imagine you are invited to the biggest party of the year. For months you search for the perfect dress. You want to find the shoes that make just the right statement, and your jewelry has to be just right. To say you are excited is an understatement. But as you open the door to enter, all noise stops and everyone's eyes are on you. Your excitement changes to panic as you realize that not only are you late, but you are way overdressed.  Every table is at capacity, every seat is taken. And now people are staring - but trying not to stare - as you nervously move around the room, anxiously searching for an available chair. Finally, you see one. You rush over and sit down, breathing a sigh of relief as you hear the party start back up around you. And what's even better, when you look around the table, you find friendly faces offering you a drink and asking about your day.


When my daughter Ruby was born, the new world we found ourselves in was that party, and Gigi's Playhouse was that table.



We did not have a prenatal diagnosis, so when Ruby was born with Down syndrome we were thrown into something we had never prepared for. We had no connection to anything related to Down syndrome, but luckily for us, a close friend found Gigi's Playhouse through a Google search. I still remember the first time Ruby and I visited Gigi's. We attended Therapeutic Thursday, which is a program involving physical therapists and speech therapists and occupational therapists, all working with attendees and their children in whatever capacity needed. But the therapy part is not what I remember most about that morning; it was the instant connection I had with two other moms I met. We talked all morning, exchanging similar diagnosis stories and comparing notes. The next week, I couldn't wait to go back. But instead of those two moms, I met and connected with a few different moms, with different aged kids and different stories. And the following week, the pattern continued.

It's easy to see how I quickly became a Gigi's Playhouse addict. It gave me such an great opportunity to join up with other families, families who were walking the same walk as us and who just got it. Not to mention, every time I attended, there was a volunteer therapist there helping me. This was huge - HUGE - for our family, especially in the early days when we did not have an established community to go to with our questions and concerns.

We celebrated my daughter's fifth birthday yesterday. Five years of Ruby. Five years of Gigi's. In the last five years, Ruby has visited Gigi's pretty much every week of her life, even through an eight month season of leukemia. And why? Because she has therapists and tutors and volunteers...  and friends. She has more friends through Gigi's than either of her siblings ever had. And those older siblings have been to Gigi's Playhouse dozens of times to participate in programs with her. They know Gigi's kids by name, and they have seen the great worth of our Down syndrome community. And me? I have a tribe, A HUGE tribe, that wouldn't be nearly the size it is without Gigi's Playhouse as it's backbone. This community is so important to me, so vital to my daily success as Ruby's mom that I even got a matching tattoo with a bunch of them earlier this year.

My family is forever grateful to all of you for supporting the efforts at Gigi's Playhouse, for seeing the potential of our kids, and for giving us a seat at the table.


Friday, June 08, 2018

Shark In The Water

Another season of summer swim is upon us. Maddux and Eli have been doing this since they were 4 and 5 years old, and they are still goign strong. Each year, practices start, after school, a few weeks before school even finishes. Then practices continue, but in the morning hours. This year, with their ages being so 'old', their mornig practice doesn't start until 10:30AM...that is late!
A few meets in, and both are having success at having fun, with the occasional blue ribbon. Maddux claims her favorite stroke is back stroke, while I think Eli is favoring butterfly these days.
Ruby was not quite up to swim form for this season, but the big kids are excited for her to hopefully join next year.

Thursday, June 07, 2018

Ruby is 5!

"Me Booth-day!"
This is what Ruby has been telling us for the last week. She knows her birthday is on "zoon seffen" (June seven), and she has been so excited for that day to arrive.
The kids made her pancakes for breakfast, and we hung out, playing at home most of the morning. Because of our summer nights being full of swim meets and VBX rehearsals and soccer tryouts, we had her 'non-party' just before dinner. Close to 50 friends came over to raise an ice cream cone to Ruby as we sang 'Happy Birthday'.

Ruby loved seeing and greeting her guests as they arrived, but one got an especially enthusiastic welcome: her pre-school teacher, Miss Jennifer. Ruby ran across the yard and tackled her with a hug, grabbing her hand and telling her to 'come. sit'. She also attempted to introduce her to several other attendees.
As we've been made aware so many times before, we have an amazing village around us because of Ruby. She is so loved!