Seesaw

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.

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.

Therapy Update

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

Speech
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.

OT
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!

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.)

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 roof...fun 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!

Maddux Soccer

Maddux has played soccer many seasons now, and she tells us she likes it, so we keep on signing up! Lehr was able to coach her team this season, which is always a good/bad thing. It's great to have the added time of Lehr and whichever child is being coached doing something together, but sometimes that means whichever child is involved receives less coaching because they listen less than they would with someone else or they get 'off task' more because it's just Daaa-ad.

Overall it was a good season. Maddux enjoyed playing goalie several times. She was middle-of-the-pack size-wise, and probably the same for aggressive play. Her speed continues to be her main asset (this girl is fast!). Maddux didn't grow tremendously, but she still told us she liked it at the end, so we'll consider it a win.