Monday, March 23, 2015

Sometimes It's Just Easier

Here comes the truth train again....choo choo!

*Disclaimer: I realize that all too often these days I open up the doors to my crazy mind and let everything come out. These truth moments are just that: truth moments for me at the time. It doesn't mean 'everything is awesome' and it doesn't mean it's all hard times. It's just a result of what I'm swimming in these days. I don't write these types of posts to be a downer, or in hopes of pity for Ruby. It's just my cathartic way of working through parenthood: for Ruby and the other two knuckleheads.

I am all for inclusion. So for it. The pros for Ruby, the pros for the other kids, the pros for the school, the pros for the church, the pros for the community. We are practicing it now and planning to practice it in school, church and any other area we can for as long as we can. But, if I'm really really honest, sometimes it is just easier to not participate in inclusion.
Ugh. This is tough. I recently blogged about the D word. That plays into it sometimes, because it can be hard to surround myself with a room full of kids the same age as Ruby who have developed significantly beyond her. It isn't always easy to have her delays be so obvious. But more than that, it often stresses me out these days to be in some inclusion situations where we don't know the other families. We have had nothing but awesome times with friends on play dates and at church where Ruby interacts with other typical kids her age. But the situations where we encounter single-serving friends, or semester-long friends, those are hard. 
The moms and dads smile earnestly when they see Ruby. And they look me in the eye and genuinely tell me, "She's just adorable" or "She's so loving". But that smile changes after a few minutes of play. That smile becomes nervous when she starts to verbally protest to being held or sitting down (as all 2-year-olds do). Their laughter becomes stiff and a little forced when it becomes unclear if she will hug or tackle their child (as all 2-year-olds do). They break eye contact with her when her tongue hangs down her chin, mouth open, as she studies their face for longer than they're used to.
And halfway through the time spent at the park or class I notice that my shoulders have been tensed up and I've been clenching my jaw. Not because I worry about her hugging someone too hard, or because her tantrums are bad (because she has yet to even throw a tantrum), or because she's being rude with her staring, but because I feel overprotective. Overprotective of Ruby and the perception of Ruby. I know that everything she does will be scrutinized more than it would be for any typical child in the room because of her visible extra chromosome. How do I know? Because I was those moms that smiled stiffly and laughed nervously and looked away. Heck, I'm still that mom around some kids with other types of challenges. I think I've gotten more comfortable around most kids in our greater community since Ruby's birth, but I'm still a work in progress too.
So sometimes it's just easier for me to be with other moms who get it in a way only we can. Sometimes it's just easier because I can relax a little more when Ruby doesn't stand out. Sometimes it's just easier to be with friends that know us because they are comfortable with who Ruby is. Sometimes (choo choo!) it's just easier because when I'm in our community or with friends, then I can let Ruby be Ruby instead of trying to make her something she's not meant to be.

Thursday, March 19, 2015

World Down Syndrome Day Prep

As World Down Syndrome Day approached last year, we had just started having conversations with Eli and Maddux about what 'Down syndrome' means....I think it was that week, actually! Both kids wore mismatched socks and we touched lightly on how wearing socks causes conversations about what Down syndrome really is and isn't. Different socks, check. No real conversations, but we had pulled our whole family into this community.

This year is so different. We've had many more conversations since then about more specifics surrounding T21. Eli can even explain the whole chromosome situation to you. A few weeks ago we started talking about World Down Syndrome Day. We put out the 2015 Team Ruby shirt for people to buy and wear, and the kids started talking about their socks. Then Eli said he was going to get his whole class to wear mismatched socks. While this was cool to hear, I wasn't sure if Eli would really follow through. This wasn't anything we wanted to push on the kids, so we let Eli take the lead and he kept with it. We helped him figure out what to say to his class this week (though all we really did was listen because his plan for speaking was spot on), and we talked about the best time to remind kids (the day before).

This afternoon, Eli stood up in front of his class and told them that Saturday (3/21) was World Down Syndrome Day. He said to participate, our family and friends were planning to wear our Team Ruby shirts and mismatched socks. He reminded them that Ruby has Down syndrome and that means she has 3 sets of her 21st chromosome instead of the pair that the rest of us have. He also brought in a picture of Ruby, his Ruby shirt and a pair of mismatched socks to show them as an example of what he was planning to wear. Then he asked them to wear mismatched socks too because what makes you different makes you beautiful. AND he asked them to wear red because that is Ruby's color.
 Low and behold he got off of the bus and told me to pull up his class blog. His teacher always posts the homework on there, so I didn't think anything of it. We did, but as he scanned through it, he said, "It's not there...refresh it." I did and suddenly appeared an extra item of 'homework':

World Down Syndrome Day:   March 21st is World Down Syndrome Day (The 21st chromosome has 3 chromosomes instead of 2, therefore, 3/21  is the date.) Help us support this fabulous cause by wearing red and crazy socks tomorrow! Thank you Eli for sharing your story.
 
I was so proud! I emailed his teacher and thanked her and then asked if i could come in to take a picture of the class. Eli assures me that everyone is participating!

Wednesday, March 04, 2015

Pokerface

Sometime in the last year, Lehr introduced the game of poker to the kids. A great tool for math stats in your head, and counting/adding chips quick, he thought it would be fun to have an ongoing game with the kids. Eli has had moments of really taking to it here and there, even starting to play via Facetime with his grandfather.
Recently the kids and Lehr started up again and this time Maddux is very into it also. It has provided much after dinner fun for everyone, even if there is no money at stake.

Friday, February 27, 2015

The D Word

Delay.

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 that...it 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.

Wednesday, February 25, 2015

Career Day

Cool moments.

They usually happen when we don't plan, when we're not looking, when we're unaware there was even an opportunity.

Two weeks ago it was Career Day at Eli and Maddux's school. Each kid had three people representing three different types of careers visit their class throughout the day. When they got home that afternoon, we discussed who had come to their rooms, what they talked about, anything cool they learned, etc. It came up that an Occupational Therapist came to Eli's class. We commented how cool that was since his sister (Ruby) does occupational therapy. We talked a little more about it, but the conversation basically ended there.

The other night when Eli and I were on a mini date getting an x-ray for him, career day came up again and he gave me a very different recount of what happened after the Occupational Therapist visited his class. After each of the careers left their room, their teacher followed up with a summary and some general discussion. During the discussion post-OT, Eli raised his hand and said that he knew about OT because his sister did all kinds of therapy because she has Down syndrome. He said everyone in his class commented: "What?" "No way!" "I didn't know that." Eli said that half of them then asked, "What is Down syndrome?" Eli's teacher let him explain it (he gave a brief chat about chromosomes and how Ruby has 3 of the 21's set, and how she does speech, physical and occupational therapy). He said his teacher then explained it too.

So so cool. I loved sitting their listening to Eli tell this story, asking him prompting questions when he left out information that I was dying to know about the whole thing. I kept commenting to him how neat it was that he taught his class something (and why didn't he tell me about this when we talked Career Day a few weeks ago!??!).
That boy. Just when I assume he doesn't have 'it' in him, he proves me wrong.

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.