Friday, February 27, 2015

The D Word


Actually, it's a Double-D word: Developmental Delay.

As I do in so many of my posts these days, here I am, attempting to tackle one of the many demons we face. By we I mean Lehr and I, but these demons are faced by oh so many other families dealing with special needs. In fact, they could be faced by any parents. When I take a step back from it all, I'm often very aware at how the stuff we deal with in regards to Ruby parallels the stuff we deal with for Maddux and Eli too.

Right out of the gate we were traumatized by publications and web-searches that spoke of the many developmental delays we should expect for Ruby. This was before I had a clue or a hope, so I took much of it as gospel. She will be a late walker. She will struggle to talk, if at all. She will struggle to keep up with her peers.
Because this was all fact to me, I started looking for those delays immediately. Even before we started physical therapy. I researched until all hours of the night, searching desperately to find the latest, greatest technique or strategy or tool to help her close in on that gap. I watched Ruby like a hawk in all things, analyzing her every move and sound, over-processing what it did or didn't mean about her ability to progress.
Most days I would gather enough evidence from this constant observation to convince myself that on that day, no one could tell she had Down syndrome - no one would see a delay - because she was doing everything any other baby her age was doing. The next morning I would wake up and repeat several home therapy sessions with her again, determined to achieve the same 'success' again.
Months passed and Ruby continued to work as hard as we pushed her. She met goal after goal, and we had more of those 'most days'. But every once in a while I'd meet a baby close to her in age that would surpass her abilities and it would all come crashing down. I'd dig deeper into the research library, buy another book, resolve to work harder the next day, all in the name of closing that delay gap between Ruby and other kids. And because she's a rockstar, Ruby rose to the challenge and mastered skill after skill, allowing me to have 'most days'.
But as we approached her first birthday, the gap couldn't be ignored. While Ruby was killing it at Physical Therapy, she still was not crawling, and her peers were starting to take their first steps. It became all too easy for me to surround myself with therapists and kids in the Down syndrome community that cheered Ruby on and reveled in her successes the way I did. But when I stepped outside of that world, reality pulled an ice bucket challenge on me. All of that hard work and success would flee from my mind and all I could see was the delay.
The thing is, I knew this was going to happen. As Ruby ages, the gap between her and her peers will likely grow exponentially bigger. But even as I knew that in my mind, seeing it was hard. Some days I could barely stand to be around other babies Ruby's age because everything they did reminded me of what Ruby wasn't doing. Sometimes I would even tell myself that it was because I wasn't working hard enough, even though I couldn't imagine how we could possibly do more. We chased that delay - that gap - all day, every day. But we couldn't outrun it.
I know this sounds all Debbie Downer and negative, like I locked myself in the bathroom and drank during nap time when I had those bad days. It wasn't was much more subtle. If I'm honest, I'd have to say it IS more subtle. It's just that tiny voice that creeps into our 'Yay for Down syndrome' world that we live in. (And we are joyful in that world.) This demon hasn't gone away - it still finds me sometimes. Even though I KNOW in my heart that Ruby's worth is not measured in her physical achievements. Even though I KNOW Ruby is who Ruby is supposed to be. Even though I KNOW Ruby will do what her peers are doing, just in her own time. Even though I KNOW the amazing joy of celebrating every single skill mastered, no matter how small. Even though I KNOW Ruby's story will play out the way it's supposed to.
But I still hate those D words.

Monday, February 23, 2015

Therapy Update

It's so interesting how much I notice about Ruby's progress and milestones that I never noticed with the other kids. That's not a profound realization; it's obvious that if you're working intentionally on individual tasks, you will notice them more. This is especially true for these last few weeks; while Ruby has not crossed any major bridges this month, I have seen a lot of 'little' progress that gives me a cool view into all that goes into those big milestones.

Physical Therapy:
Ruby is still walking more than she's crawling. She's taking tiny little steps, but those steps go from one room to the next before she loses balance and sits down. And she's turning 90 and 180-degrees while she's walking without losing form too. She will carry things (even 2 1/2 lb weights!) from point A to point B, and she laughs every step of the way. (She KNOWS how exciting it is!)
Sometime in the last month, Ruby started going down the stairs the correct way (backwards instead of headfirst). While I've been trying to teach her forever, we struggled with her trying to slither down like a snake for quite some time. She only does that occasionally now at the one-step drop into our living room.

Speech Therapy:
No words, but many word approximations. Unfortunately they are not usually when we're prompting them; they come in random conversations. She will give me a 'B' sound more consistently though, and she will blow air out appropriately when I ask for an 'F' or 'S' sound. Some days Ruby really gives me a lot of correct feedback when we are going through sound books; those are my favorite days!

Ruby is still adding some signs; recently she's done 'music', 'cracker' (it looks just like 'music' when Ruby does it), 'play' and she tries so hard to do 'I love you'.

Wednesday, February 11, 2015

Are You My Mother?

I have another post by the same name. Eli loved this book and now Ruby does too. She already knows that when I ask "Is the cow/kitten/hen/boat his mother?", the answer is no. She will sit in my lap and shake her head 'no' each time I ask.
That girl loves her books.
That girl is smart.
Life. Is. Good.

Tuesday, February 10, 2015

Therapy Update

That girl.
She just keeps on goin'.

Ruby is walking so much more. She's developed a little bit of an 'old man shuffle': tiny steps that allow her to get farther without falling. She used to take big, more typical steps, but couldn't seem to get more than 6-ish before losing her balance. Now she can (and routinely does) make it all of the way from one room to the next, sometimes stopping mid-walk to regain her balance, but never sitting down. She is learning to pick things up and carry them as she walks, and (on her own) she's learning to change direction as she walks.

Ruby will stand on uneven surfaces all of the time. Usually it's her trampoline, but she did it on Maddux's bed the other night too. (yay) And she doesn't try to slide her way down the stairs, head-first, anymore. She has been turning herself around to 'crawl' down backwards for a few weeks.
Ruby's new speech therapist is a perfect match. First off, from the moment Ruby met Paula, she's liked her. I know this because she's not cried at all during therapy and she's mesmerized by anything Paula is doing. She is much better than I am at getting Ruby to focus on the activities, which amazes both of us. Ruby is getting much better with her "b" sound, she's added a few more signs (night-night, music, open), and she is shaking her head 'yes' at all appropriate times. When I give Ruby food now, at least half of the time she will say something two-syllable. I believe that is her saying 'thank you'. It doesn't sound like it, but it's totally intentional (and when I ask her to say thank you, she does the same, or signs it.) Ruby has found her first animal sound, after months of working on them: 'moooo'. BUT, as great as she is with her "mm" sound, her 'mooo' comes out "bmbmoooo". (Paula says it's due to the two separate sounds she is trying to make.) And when I sing to her in the car, I can see her in the rear-view mirror, doing the hand motions at the appropriate times.
All by herself, Ruby stuck a piece of food with her fork today for the first time! I cut up a cheese stick and gave her a fork, as I often do. We went through several pieces where I would help her stick it and then she'd bring it to her mouth. While she was chewing one piece, I turned to grab something and when I turned back, she had her fork stuck in a piece of cheese on the tray and was starting to bring it to her mouth. Yay!!! I worked her really hard on this skill yesterday for lunch; obviously it payed off!

Monday, February 09, 2015

Mad Dog

I really wish I'd remember to write down the stuff that comes out of that girl's mouth because it is always Awe. Some.
For now, this is all I can remember from the last few weeks:

  • The other night I was rushing her a little to get out of the shower and get her PJ's on so that we could finish up Little House in the Prairie before it was due at the library. She and I had been planning (and looking forward) to reading two or three whole chapters before bed. But she was dawdling while drying her hair and she asked me several times if we could only read one and save the others for tomorrow after school. We had a few minutes of back and forth until I finally asked why she didn't want to read that night. In a very serious tone she said, "Because I want to join the party downstairs." (Lehr had some music on while he and Ruby hung out before her bath.)
  • After Maddux attended a ballet performance of Snow White with her class, we were discussing the details. At one point she told me that there were some 5, 6, and 7 year olds dancing too. I asked which part(s) they were playing and she told me, "lions". My memory of Snow White doesn't include lions, so I asked her if there were really lions in Snow White. She looked at me, batted her eyelashes and said, "Think outside of the box!"

Thursday, February 05, 2015

Therapy Update

I don't even know where to begin. This girl and her progress...amazing!
Physical Therapy:
I would call Ruby an official walker now. She takes more than 10 steps at a time and chooses to walk way more than crawl as a means for transportation. Last week Ruby was still walking, but it was no more than 6-8 steps and she still 'crashed' a lot. Not a full on walk till she ran out of steam, but there was no regrouping if/when she lost her balance.

This week has found her taking slightly smaller steps and often slowing to a stop to regain her composure before continuing to her destination. Sometimes she still only gets 4-6 steps, but other times she makes it across the room. We've been working with holding objects while she walks, to improve her core strength and overall stability. Black bean cans, tennis balls, small buckets and weighted 'soft' balls are all in her tool belt.
Occupational Therapy:
While we don't have any official sessions of this, Ruby's therapist is incorporating it more and more, and I've been working on some things with her as well. The last two weeks we've been working on stacking objects (boxes and cans), putting objects on top of the couch, and clothes pins. That last one has been the most fun for Ruby: she loves to pull the clothes pins off of her shoes or shirt.

I've been working mostly on feeding skills, trying to get her to self-load the fork. One of those control strategies is using toothpicks to eat from. I load up a few with cheese or apple or meat and she picks them up and eats from the end. Obviously she has to bring it to her mouth correctly (which she already does very well with a fork), but she also has to use her fingers intentionally to pick up the end of the toothpick. I let her color a few times each week too, to work on that grip strength.
Speech Therapy:
Ruby has a new speech therapist. While our first one (through Babies Can't Wait) focused mostly on oral motor strengthening for eating and speech prep, this new one is more speech/sounds oriented. So far, so good. She is amazing at getting Ruby to S.L.O.W. down and listen. I try to replicate on my own, but I am not as proficient. Ruby has added more signs: music, bird (just like duck), night-night. And she does some hand motions with our songs that we sing: Itsy Bitsy Spider, Pat-a-Cake, and Row Your Boat. She is also getting better about giving me the 'B' sound. She now nods 'yes' (she brings her head back but doesn't get the nod part as well yet), and when I ask her what the cow says (or if she sees one in a book), she says "bmbmbooooo". As happy as I am about that one (her first animal sound), I'm confused because "mmm" has been her best (and often only) consonant for so long. You'd think she'd make the 'moo' sound more pronounced.

Tuesday, January 27, 2015

How Far She Reaches

Yet another post I've started and stopped about a dozen times. The subject of Ruby and how she affects those around her is a concept that is played out before us weekly, sometimes daily. And it's in so many different ways that every time I think I have a handle on it, something else happens that makes me realize that my perspective was stopping me from seeing other angles that were equally, if not more, amazing.

Since her birth - since the night she was born - Ruby has been changing those around her. It started with us, Lehr and I. She showed us right away that while she carried an extra chromosome, she was still 'just' a baby. During that hospital stay, her diagnosis forced a couple we're very close to into this community. Then we returned home and allowed her to change others around us, one at a time: my mom, one of our pastors, more friends, more family.
Most of our friends and family had no prior connection to anyone like Ruby, so she became their ambassador through this diagnosis. And she did it in the most gentle way. Just as we didn't know about Ruby's diagnosis when we first saw her, almost every person we introduced Ruby to didn't know until we told them. Ruby was sure to put everyone she met under her spell, captivating them, not letting on that she had an extra chromosome until at least 20-30 minutes after they'd been able to hold her and connect with her.

A few weeks after she was born, we made the news more public by sharing her full birth story on the blog. And before I knew it, people from everywhere, friends of friends of friends were 'friending' me on Facebook, all for the purpose of following my photos and one-liners about Ruby. It became so much that I ended up creating a separate "Team Ruby" page just for her adoring fans. I still get messages and comments on her page daily from people I've never met, remarking how much they love learning about Ruby.
When we started planning for the Atlanta Buddy Walk, I hoped we would have a group of friends join us. And I prayed that we would raise a respectable amount of money for the local agencies and organizations. We were blown away - BLOWN AWAY - by the amount of money pouring in. Every week more and more donations were made in Ruby's name. Until the night before the walk, Ruby supporters raised the 5th most funds in all of Atlanta. And Team Ruby walkers? We topped out at 100. Unbelievable. On the morning of the walk, red Team Ruby shirts were seen all around our church, and our pastor even mentioned Team Ruby and the Buddy Walk in his sermon.
As we zoom in, Ruby has worked her way very deeply into the hearts and lives of several people. Some of these friends are experiencing Ruby's diagnosis for the first time through her and some are furthering their heart for the Down syndrome community. Sometimes this comes in the form of acquaintances and friends (both female and male!) trying to sneak in snuggles at church. Sometimes it's friends of mine, vying for a chance to Ruby-sit for an hour or so. Sometimes it manifests itself as kids at church lying on the floor and playing with her. And sometimes it's the way I cannot walk through Publix, or sit down in a restaurant, or go to the post office without someone following us and starting up a conversation with her because they can't break eye contact with her.
One of Ruby's strongest connections with someone she only sees weekly, at best, is with Russell. A boy who Lehr and I have had the pleasure of seeing grow up over the past 8-ish years. He has always been a rock star older kid (he's just a little older than Eli) to our family, but what we've seen when he's with Ruby has brought us more comfort than anything. Russell's mom recently shared with us that he has been drawn to kids with T21 through most of his life. And much like his connection with Ruby, his interactions with these other children have been magnetic. She wrote what I'm trying to say WAY better than I ever could:

Russell asks almost daily if there is any "news" about Ruby on her Facebook page. Funny pictures, cute videos. "Anything today, Mom?" I love that they have this forehead thing happening right now on the floor after church.  Magnets. Russell loves Ruby. I do believe that God goes before us, prepares people to have influence in our lives and allows us to be specifically loved by those who might not be obvious choices. I believe that God has prepared Russell to specifically love Ruby and kiddos just like her. What a delight she is to our lives. To his life, especially as he gets to love in a specific way that God crafted him. It's not an accident that we are friends. Not an accident that God made my boy the way He did and your girl the way He did and they dig each other. Ruby has a huge fan club.  HUGE. But I truly believe she will have a life long friend and advocate in Russell. Thanks for letting him love on her, manhandle her, carry her around when unnecessary, get all up in her face.... I think God made him that way.

Sunday, January 25, 2015

Ski Trip

Day 2...can't believe the kids woke up! Skiing almost 12 hours yesterday should have found them sleeping until noon, but they were awake by 8, ready for more. Lehr took Eli and Maddux up and down the mountain all morning again. We had to drive home today, but that didn't stop them from skiing from 9 until 1. Maddux stopped around noon, the fatigue from Saturday kicking in, but the boys went until the last minute. Can't put into words how proud I am of those kids...they both had a great weekend because they just focused on the fun and the excitement of a new experience.

Saturday, January 24, 2015

Ski Bunnies

For Christmas, Lehr and I gave the older kids a weekend ski trip. We chose a nearby 'resort': Cataloochee, in North Carolina. The kids were SO excited.

We scored some amazing ski gear on Craigslist and were able to outfit both of them with anything they could want or need (including helmets!). The gear was from a family with two girls, so the stuff had a slight feminine feel, but nothing over the top. The jacket Eli ended up in had some bright colors in it; he looked like a snowboarder. And his helmet was the lightest of pink (almost white), but he didn't mind. He actually said, "I don't care; I just want to ski."
We drove up after work on Thursday and planned to ski Friday and Saturday. Unfortunately, it poured all day Friday, which would not have made for a successful first day. We ended up just hanging around the cabin all day, watching movies, playing games, and dipping in the hot tub a few times.
Saturday was the opposite: a tiny bit of snow to start the day, but then bright blue skies and 36degrees with NO wind. We put the kids in a half day of ski school, just to get them acclimated. Even though we both got lift tickets for the morning, we ended up just watching them do their ski school thing all morning.
I was impressed with how well they both did!
When Maddux and Eli finished with 'school' at lunchtime, they asked to go down their school bunny slope a few more times (on their own) to make sure before going up top. That's all it took and then Lehr took them up (one at a time the first time) the chair lift to the top. I couldn't believe how quickly they came down...only a few falls each! Ruby was done at that point, so I took her back to the cabin for lunch and a nap while Lehr stayed and skied with the kids. They had a blast and even managed to get on and off of the chair lift without any injuries.
At 5PM, Ruby and I picked the three up from the mountain and brought them home for a quick dinner. They were back on the slopes between 6:30 and 7 and stayed until 9:30. That's a looong time! Maddux and Eli seriously had a blast. Lehr said they were both totally into it and enjoyed every fall, every bobble, everything.

Sunday, January 11, 2015

(Don't) Give That Girl A Hand

Because she doesn't need it!

Ruby had PT on Tuesday morning this week. Our therapist always gives us a handful of 'exercises' to work on for the next week, and we usually rotate through them in the course of our day. This week, however, I kinda stuck on one in particular: helping Ruby to stand without assistance or pulling up. (Or rather, helping Ruby to realize she doesn't NEED assistance to stand.)
Fast forward to Thursday after dinner (just over 48 hours after we started working on it!), Lehr and I were standing in the kitchen having a conversation. Ruby is crawling around and playing at our feet. Suddenly I see her out of the corner of my eye, in the middle of the floor, stand up from the ground and take 3 or 4 steps towards me! She was all smiles and giggle, very proud of herself.
I got her to repeat the stand a few more times before bed, and then our Friday was spent repeating again and again. I got all cheesy and used the prompt, "How big is Ruby??!?" to get her to stand and walk towards me. (Hey, it works!) Now she does it non-stop, which means she is taking more steps than ever.