Friday, January 05, 2018

Talking Talking Talking

This girl just keeps going with her conversational speech! Over the holiday break she picked up a few new phrases:
  • "Oh WOW!"
  • "Oh my gosh!"
  • "Santa Clause. My HOME!"
  • "I missed you!" (my favorite)
  • "Oh, dangit"
  • "Oh, Yes, PLEASE!"
  • "Tag in back" (when referencing how to put on pants)
  • "I can do it!"
I couldn't love all of these new phrases more, especially because they were not intentionally taught; she just picked them up in her daily conversations with other people.
When returning to school this week, she hugged each of her classmates and told them, by name, "I missed you!". She also told her teachers that she was 'so happy' to be back at school.

Today is one year from the first day she walked into that classroom. I can't believe how far she's come in a year, and I couldn't be happier about all of the continued new

Thursday, December 14, 2017

Two Person Solo

Eli's love for all things music has continued throughout this year. It's easy for me to forget that he plays the trumpet because he spends so much time playing drums for the church and learning new things on his guitar in his spare time that we rarely hear the horn at home. But he plays the trumpet at least as much because he has band class every day at school. (This kid blows my mind!)

The other night we attended Eli's holiday band concert. He'd been telling me for a little while that he had a solo. While I thought that was really cool, I assumed he had a line in a song the whole band played that he was chosen to lead, or maybe even play alone. But at one point Eli told me his 'solo' was he and a classmate. Honestly, I wasn't sure what to expect.

After the seventh grade played their first song, their band director called Eli and another student up front. While they were walking through the music stands, the director told the audience that weeks prior, the two boys approached him and asked if they could learn and perform "Deck the Halls" for the concert. The director told them if they wanted to find, learn and practice the song on their own, he would give them a shot to 'preview' it to him the day before the concert to see if he might include it. They did and he did!

Eli and his friend each played different parts for a verse of Deck the Halls, taking turns playing and then playing together and they sounded great!

Thursday, November 16, 2017


As we eluded to a month or so ago, Ruby was due for her annual IEP this month. This afternoon we sat down with Ruby's 'team' at school to discuss the goals currently on her IEP, modify or set new ones, and start the discussion about placement for next year. With Ruby having a summer birthday, she will either be older or younger than her peers, depending on when we start her in Kindergarten. This was a tough decision for us when we faced it with is proving to be equally as tough with Ruby.

First, let's talk about the goals. Ruby mastered all of the social, behavioral, speech and OT goals set for her at the end of last year (we did an IEP amend before school let out). We put some new ones in place, mainly to get her through the end of this school year, though it has been obvious to me that her teachers are not holding anything back from Ruby. When she has shown mastery of a goal at school, they have moved on to the next thing for her without hesitation.

When the team talks about Ruby, they can't keep the smiles off of their faces; it's obvious how much they love working with her. And while they think she is ready to move on from their classroom, they will definitely miss her. (And she will miss them!) The talk about next year covered everything from Ruby's growth in the short time she's been in the Special Needs Pre-K to her ability to follow the classroom routines and transitions well. She is very social, and they don't see any issues with her in regards to typical peers. I asked many questions about what Kindergarten would look like for her (number of pull-outs, percent of time with typical peers, etc.); while answering these questions basically requires a crystal ball, Ruby's team still gave me solid responses.

And then, when I launched into my requests for things that would help better prepare her for a fall Kindergarten start, the meeting got even better. I asked for a few resources for things that Ruby would be expected to learn while in Kindergarten, and they gave them willingly. I asked for opportunities for Ruby to visit with a Kindergarten class before the end of the year to help get her acquainted with a bigger class size. Not only did they say they would make that happen, but they said they would try to have it start right after Christmas. (Hopefully circle time and some specials.) And here I was thinking that would be a difficult sell for a visit a few times before the end of the school year.

This is the part where I cheer and dance and rejoice because I know this IEP will likely go down as the best one we will ever have. This just isn't how it normally works.

At the end of the day, we are having to weigh our options. We have three: Kindergarten, repeat Special Needs Pre-K, or private Pre-K/Young 5's. I've visited a few private programs in the last few weeks, to see if those options really are options. One I found is great, amazing even, but comes with a steep price tag and a far commute. The other is affordable but carries no extras, and a lot of uncertainties. Now that we've seen how much Ruby can thrive in the right environment, I'm so scared of the missed opportunities we could face putting her in the 'not-right' place. Especially for a whole year. Especially when the whole reason of putting her there instead of Kindergarten is to see more growth.

As much as we love her SNPK, repeating means just that: repeating the same curriculum. And Ruby has mastered it - seriously mastered it. That doesn't mean she's up to speed with every other four-year-old out there, but the colors, letters, numbers, months, seasons, etc. that they teach in her class is all information Ruby has demonstrated comprehension of. So that means she could be very bored next year. Also, she would be 5 and her classmates would be 3 and 4. We know that so much of what Ruby has learned at Sope Creek so far has come from her classroom peers, but if they are younger, there is a chance she isn't learning from them anymore. Also, we've been so fortunate that Ruby has not picked up any undesirable behaviors at school. My girl is a big sponge that observes everyone very closely and follows their lead. If we were to roll the dice with another year, it's quite possible she could have a behavior model that ends up creating behaviors that we have to work hard to correct.

So that leaves us with Kindergarten. So many pros and cons for each of these choices, but especially this one. My girl would love it. Love. it. She would have some great models for speech, lots of new information for her to learn, and I have no doubt that the kids would rally around her and help her when needed. But we know about the delays. And the big question is would those delays put her in a position where she is away from typical peers more than she is with them. I would hope not, but that isn't an question anyone can answer right now.
So we wait and we pray and we pray some more.

Wednesday, November 15, 2017


Ruby's speech has come oh-so far in the last six months. Even the last three months. That girl is talking SO much and saying up to 4 words in a 'sentence', spontaneously (as in, not repeating after me) very consistently at home. As with any language explosion, her articulation has suffered because she is in such a rush to say all of the new things she can say that her mouth can't quite catch up. Especially because she has to work so hard to correctly make those sounds anyway.

One of the areas Ruby has always excelled with speech has been her receptive language. Basically that means what she's able to understand as it is spoken to her. Now that she's giving us so much more in the expressive speech world (what she actually says), we can see all that she's been learning and holding on to.

Prime example: she knows her name and how to spell it and loves to tell you. This is something she's been doing for a little while, but this video from the other night just brings it home. Check out this chatterbox! (Gobble, Gobble)
So many times we see our kids work really hard on something they are struggling with. With my typical kids, I have definitely seen them struggle and sometimes not succeed, whether it's with a sport or an academic milestone. But most of the time, they got to their goal or the goal was not one that was required for every day life (like a new sport). With Ruby and her peers, we see our kids work hard - SO hard - day in and day out. On everything. Not many things arise in their day that they don't have to work on, from social skills to physically maneuvering their world to speaking. And what I didn't realize before I had Ruby was that many times this hard work goes 'unrewarded'. That is, they don't always see the fruits of their labor. So many times Ruby will work on a skill for months on end before mastering it. Or, we will work on it for a solid year and still not have mastered it. This video has been a good reminder to me to reward the hard work even when the result is not video-worthy.

Wednesday, November 01, 2017

She is a Gem

Totally amazed by the oh-so strong sight word game Ruby is bringing these days.

Last week Ruby and I started working on sight words again. We did it pretty solidly through the spring and summer and we had about a dozen words that she was fairly consistent on knowing. As often happens with us, we got sidetracked with other therapy tools and practices and we haven't picked up the cards since August. Rather than go back to the original set, I pulled out some new cards/words (actually old - we used them for speech while we were in the hospital). After only two times of working on them, Ruby had a really good success rate (check out the video).

So fast-forward to yesterday when I was making Ruby's lunch. She was being a little impatient so I told her to get her chair and sit at the table to wait. She obeyed (which surprised me, by the way, since she doesn't tend to do that these days) and then fished around in the basket I keep on the table with therapy stuff. She pulled out the old cards (from spring/summer) and proceeded to correctly tell me half of them.


We haven't touched those cards in over two months. One of the biggest struggles I have in working with Ruby on these things is how hard it seems for things to 'stick' with her unless we drill it daily. Literally daily. She very much proved me wrong...

Wednesday, October 25, 2017


Joshua 1:9 Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.

I asked to observe Ruby's class this week, in preparation for her upcoming IEP meeting to determine our plans for next year. Can I just say that I love the class she is in. I love her teachers. I love her therapists. I love her peers. I love that Ruby loves school. I love that she knows what to do, where to go, and what is expected. I love the independence they have helped her develop. I love that she is in a place that includes and invites her, a safe place where she can be who she is. Everything about that class makes me so so happy, every day. (Even when she doesn't have a great day.)
But it is a bubble. A very awesome but modified and carefully thought out and aided bubble. And I choose to not dwell on that part most days, but in light of decisions that have to be made for next year, I do need to intentionally remember that reality.

So I am currently on a seesaw, alternating between being amazed by and thrilled with the significant progress she's made in areas of independence and speech and fine motor skills, and also painfully aware that it's still not 'enough' to put her on a level playing field with her typical peers. (Peers that would make up the vast majority, if not the entirety, of her Kindergarten class next year.)

Do we send Ruby to Kindergarten next year? She has come so far in less than a year of Special Needs Pre-K, and she still has 3/4 of a year left. She knows her school and is able to walk the halls and play on the playground. She loves the routines that are typical for a classroom: put away your lunch, hang your backpack, pick a classroom job, go to your seat and start working.

Or do we hold her back? She is on the younger end of things. She does struggle with impulse control. While she loves school, she does sometimes have a day where 'no' is the answer of choice. She does struggle to wait her turn in group settings.

If we hold her back and she stays in her class, she will not be exposed to any new material. And while her speech and writing cannot demonstrate her comprehension, her receptive understanding of all things necessary (numbers, colors, words, objects, family members, calendars, etc.) is up to speed. So will she be bored (re: have behavioral issues) if we hold her back? Or do we roll the dice and try a typical Preschool class instead, to give slightly different content? That's a scary one for me right now, because of how much I've seen her thrive in SNPK over her typical experience.

Up and down. Every day. The ups are really great though, and for now they are very much outweighing the downs. But, with the IEP looming, we do have to stay on that seesaw and take the 'bad' with the good.

Tuesday, October 24, 2017

Deck Concert Series

After ten years of holding our breath every time someone leans on our deck railing, or even steps foot on it, we replaced the whole thing. The project finished last week and we could not be happier. In addition to the awesome stadium stairs, it's flat, open surface lends itself to shows, concerts, performance. This works well since we are a house filled with drama and noise.

Eli has been working on guitar skills for several months now, and this week he will perform in his school's Talent/Variety Show. In preparation for that, he gave us our first Concert on the Deck tonight. 
Ruby loves everything Eli and Maddux do, and that is true for music too. Last night she kept walking over to his pedal board and trying to step on the pedals like she sees him do. We reminded her over and over to look with her 'eyes, not hands'. At one point she walked to the pedal board again, looked at me and said, "No touch. Eyes. No hands?" When I nodded in agreement, she then pivoted at the waist and got her eyes right up next to the board to 'look with her eyes, not her hands.' (You can see some of this at the very beginning of the video.)
Eli gave us a few listens to his Jimi Hendrix version of The Star-Spangled Banner before he exited the stage. The evening ended with Eli giving a free lesson to one of his shorter groupies.

Monday, October 23, 2017

Therapy Update

I have been bad, bad, bad about blogging since the beginning of school. What can I say...busy times!

This girl.
She is such a chatter box! Ruby's speech continues to grow, with her spontaneous speech improving daily. We are in a season where I get comments from friends like "I can't believe how much she's talking!" or "She's talking so much." And these are people who see her a few times a month at least! I recently started going back through a large stack of sight word flash cards with Ruby. While in the hospital, we would go through them daily. My focus then was not for her to read them as much as mimic me saying them. At best, there were 10-12 that she could say (repeating after me) with enough intelligibility for someone else to know what she was saying. When we picked those cards up last week, I realized that she repeats every one after me, and only a few are hard to recognize. (This stack is at least 50-cards deep.)
This made me realize how far we've come in the last two years. Not only is she speaking more, but she is doing so spontaneously (without being directly by me, or without repeating after me) and she is able to repeat anything I give her. When you are in the early stages of speech therapy, you are often measuring success by how many words your child has. For a long time that was a single digit number: the total words Ruby could say, repeated or spontaneous. If I think about it now, Ruby's word measure is infinite. If I pull out 100 cards and say the word first, she will repeat 100 of those words back to me.

This. Is. Amazing. And oh-so encouraging.

PT/Aquatic Therapy
Still Ruby's favorite hour of the week! We missed Aquatic Therapy for a month recently due to school breaks and scheduling issues, but when we returned, Ruby's therapist was excited and surprised to see how much stronger she had gotten in that month (instead of losing skills/muscle). This speaks loudly to the benefits of being in a school environment that allows for free-time on the playground for recess. My girl runs (and runs and runs) and climbs the whole time she is outside, and it is really paying off!  
Ruby can now jump with two feet, getting actual air under her feet. And she likes to jump all of the time. She has jumped in succession (two or more times in a row), but that skill is still emerging. She has jumped over obstacles (pool noodle height or smaller), but that still is still emerging too.

Just this week I am starting to see some improvements in this area. Hallelujah!! Ruby just started to show interest/ability in coloring inside of the lines and is working on that skill. FINALLY this week she started tracing some lines/shapes/letters for me with success. She has been able to trace a line going straight down for a while, and I know she gives them a little more accuracy at school, but at home we have been struggling with this one. (One afternoon she even traced an "R" with crazy accuracy!) And yesterday when we were coloring in the afternoon, she kept readjusting her crayon to hold it correctly (unprompted). This is crazy cool.

And her scissor skills are improving too. Straight lines through the entire paper? Yes, please!

Saturday, October 21, 2017

Winter Swim

Eli decided to join the swim team at his middle school this year. For a few weeks he had cross country runs 2 or 3 days a week and swim 2 days a week (he couldn't sleep enough!) The season ramped up his stamina immediately; the first practice found him swimming at least 1700m, which is well over the amount he would complete in any given summer swim practice. But he was happy to report this week that he could already tell that he was improving because it wasn't as hard as that first week.

Today he had his first swim meet, a home practice meet. It came on the heels of an all-night lock-in at the school, so his times may not have been his best, but he completed all four events and only had one goggle mishap: success! (It's hard to see, but he's in the middle-ish lane. He finished middle of the pack.)

Friday, October 20, 2017

Beach Trip

Another great fall break on the books! We returned to 30A for our fall break, housing with another family - one we adore - which meant 10 people under one fun fun!
For five full days we played in the waves and the sand, barely touching the pools this year! The kids seriously loved the ocean and all spent all of their time in there. Boogie boards, skin boards, surfboard/beaterboard, yolo board, nets for 'fishing', sandcastle making, and seashell seeking occupied every day.
Ruby could not get enough of the ocean. She LOVED to use the boogie board and she loved to 'swim'. She would jump at the water and try to glide, sometimes going under (which seemed to make her even happier!). Ruby rode in the bike trailer and on the front of Lehr's bike, which also made her happy as a clam. (We did have two bathroom accidents, reminding us that potty training is STILL going strong even when we think that after 1+ years we might be done.)
Maddux made friends with kids on the beach and worked in the sand and water most of the time. But she did plenty of boarding and swimming as well. She saw a dolphin and several huge rays during our stay. Her favorite activity seemed to be collecting live sand dollars...they were everywhere, which is crazy because before this trip, we'd never seen one before!
Eli was all about the boards, and all about swimming. He had a great time, especially with Drew and Davis and Bryce. We were on the beach by about 9 every morning and stayed until about 3 each day before going home to shower and get dinner. Each night we ate dinner at or on the beach, enjoying any extra sand we could.
We saw lots of other friends at the beach, at dinner, on bikes...pretty much everywhere! This was hands-down one of the best trips we've had, from the friends who shared it with us to the 'ease' of getting right down to the beach and just living there each day to the best weather and waves we've seen in a while. I love that this is our go-to vaca every fall!