Tuesday, January 17, 2017

Maddux-isms

When Maddux was a talkative toddler, she would say all kinds of funny, crazy, sometimes even insightful things, as toddlers often do. I would chalk them up to "Maddux-isms" and was sad they were a phase that would pass.
If you spend extended time with Maddux, you've probably realized that is not the case. This girl still says some of the most bizarre things. Lehr and I often meet eyes over the dinner table as she's talking, making sure the other person heard the same thing.

Unfortunately, I do not take the time to write them all down anymore, so it's hard to recount for posterity. Last night's gem is still in my mind though. We were having a discussion about the upcoming career day at Maddux's school was taking place: what careers will she hear about, what's her favorite from years' past, etc.
Maddux: Mom, YOU should come for career day! You should come speak! You could tell everyone how you take pictures.
Me: I don't know... I'm not sure..
Maddux: No really! You are a photographer. You have a CAREER! My class would love to hear about what you do. And if you come you get free breakfast!
Me: laugh laugh laugh
Maddux: Seriously mom! They will feed you.
Me: So I should go because of the breakfast? Are they going to give me oatmeal? Or is it eggs? I better make sure I like it. What is the breakfast?
Maddux: I don't know. I don't have a career, so I don't get the free breakfast.

Sunday, January 15, 2017

So How's It Going?

Ruby has been in school for a week now, so I thought it was time for an update. To be clear, she hasn't really been in school for a whole week. Even this upcoming one won't be a full five days. The first week we returned to school on a Thursday, last week we missed the first two days due to icing, and this upcoming week is following a 3-day weekend. But if you add all of that together, she's been there for just a few hours short of five school days.

Ruby loves school. Did I mention that? She yells 'coooool' when we pull into the parking lot each day, and she happily walks with me, backpack on, to the front doors where we wait for her teacher each morning. When I pick her up a few hours later, she is walking in line with her classmates and smiles so big when she sees me. After saying, "Mommy" and coming right to me for a hug, she tries to return to her teachers to go back to the classroom.
The first day, the big kids were so excited to have her at the breakfast table with them. Maddux and Eli insisted on 'first day pancakes' for her, and all three had quite the celebration while they ate. In her day at school, she does centers, speech, story time, circle time (with a calendar and weather and some other daily routines), OT twice a week, and snack/lunch. I get a great report at the end of the day telling me how she handled the transitions and each of these areas. She has yet to 'struggle' with any of them. (Again, she loves school.)

The best part? (Or at least one of the best parts, because so far it is ALL the best part.) She is ROCKING the potty thing. Finally we are able to be consistent all day with her visits to the toilet! She started going at the school on day TWO, and she has consistently gone every day since, rarely wetting her pull-up at all. This means she is wearing underwear more at home and having many days where she is dry all day. Her teacher said to start sending her in underwear to school.

Can we all stand up and cheer now?!?!

It's obviously too early to say if this is a good thing in the long run, but for right now, Ruby's new school is a GREAT thing. Even if just for right now, so many prayers have been answered.

Thursday, January 05, 2017

A Scholar

Eli's middle school operates in semesters instead of quarters. This is new for him, and we were curious if the doubled time in each grading period would be a bonus or detriment. Whether it's the added time or a shift in his study habits or just maturity in general, it appears the semester schedule is a win for Eli: he made honor roll!
All semester long, Eli appeared to be working hard, spending appropriate time on his school work, even when his extracurricular activities were taking up most of his after school time. And while we can monitor his progress through an online app his school uses, the grades weren't finalized until a few weeks ago. Eli received all A's and one B (in grammar). He is frustrated with that B; he struggled so much with that class, watching his grade rise and fall each week.
Lehr and I are beyond proud of him because we honestly did not help him with school work this fall. We discussed early on with Eli that we are here for any help he needs, but he has to ask. While he occasionally asked for us to quiz him on study guides for tests or quizzes, his assignments and projects were completed without our guidance (and knowledge, most of the time!) Life is good.

Wednesday, January 04, 2017

All The Emotions

Sitting here on the eve of Ruby's first day of her new school, special needs pre-k, all a bundle of emotions. The last three nights I've been up at 3AM, unable to sleep. It doesn't take a genius to figure out that it's my anxiety about what lies ahead for us tomorrow morning keeping me up.

I am so excited, so hopeful, so encouraged about what this next step will mean for her, but I'd be lying if I said I wasn't nervous too. Nervous about how Ruby will do with this longer day of school. Worried this situation won't help her reach any more of her potential than her other school. Scared that she will pick up bad behaviors from other kids instead of good ones. Fearful that we're settling for something less instead of pushing her to reach higher. Terrified that we are doing the wrong thing.

So tonight is a Proverbs 3:5 night...

Thursday, December 29, 2016

Way Out West

For the first time since either Maddux or Ruby has been alive, we were not home for Christmas this year. We (read: I) tend to hold on to that day as a sacred, at home, our traditions day, which doesn't blend well with travel by planes, trains or automobiles. This year, however, Lehr suggested we go, and go we did.
For ten days we invaded the space at Grandma Cathie and Grandpa Jim's townhouse, leaving traces of us in every corner imaginable. We ate all of their food, slept in all of their bedrooms and offices, and filled every waking second with noise. They claim they loved it.

Eli, Maddux and Ruby were overjoyed to see the snow immediately upon landing. Not only was it on the ground, but it was on the rooftops, the cars, the lake...everything. And it snowed at least half of the days we were there, adding to the already impressive base.
We took advantage of that by making several outings to sled, including two trips to the same hill my brother and I spent our childhood climbing up and sledding down.
My parents live on the river in a very walkable area, so we walked through the snow to the 'beach' or through the neighborhood pretty much every day. Ruby preferred to be pulled by sled, but she did plenty of walking too.
One day my brother's kids came over to hang out with us all day, and then the big kids went home to his house for a movie, pizza and a sleepover.
The next day we met them just after lunch for ice skating. Ruby sat that activity out, but she followed us on the perimeter of the rink on dry ground.
The biggest event was probably skiing. Eli and Maddux have skied a few times before in North Carolina, but nothing as big as what we took them to. The first day out, we all went and pledged to work with Ruby as long as she'd let us. My parents came along to watch and to provide a ride home for Ruby when she tired of the snow. That girl was amazing! She could not stand up in the boots and/or skis very well, but she had a blast when Lehr held her under her arms so she could coast down the hill. She did NOT want to stop!
Just before lunchtime, we loaded her up on the gondola with Grandma and Grandpa and she immediately fell asleep. Eli and Maddux stayed with Lehr and I and finished out a great day of skiing. The day after Chrsitmas, Lehr and the big kids returned and knocked out another full day on the mountain.
The day before we left we drove up the coast a little to an area that was known for it's bald eagle sightings. We were amazed at the amount of birds we saw! They were perched everywhere, as well as flying overhead. It was definitely not something you see every day!
It was so great to spend time with everyone; we do not get to see my brother's family often at all. Ruby especially enjoyed meeting her youngest male cousin, Boden. She is still wandering around the house saying, "Bodie!" like she did while we were there. Hopefully we can do it again before another ten years passes!

Thursday, December 15, 2016

The Aftermath

In the hours after the IEP, I was at peace. I felt good, very hopeful even, about this new venture. Today the reality sunk in a little more as I've had to deal with the effect of this new plan on Ruby's current schedule.

We went to one of her three speech therapists this morning and had to reschedule our upcoming visits. Not a huge deal, but it will make Mondays extra long for my girl. Then we had to go to Mt. Zion to break the news that tomorrow will be Ruby's last day for this school year. The director is and was amazing; she's seen us go through so many changes to schedule in the last two years and she's always walked with us, which is huge. But that didn't make it easier for me...felt like we were breaking up with them a little bit, even though we know we'll be back in the fall. And now I need to try to figure out a way to keep Ruby in some type of gymnastics program to continue building her core muscles for PT purposes. Not a big problem, just another logistical puzzle to solve.

I still feel good about our plan. I still feel like the meeting was a peaceful one where God clearly showed Lehr and I the way. But I am in a weird place...kind of mourning the plan we had, kind of anxious about what January holds for Ruby, kind of cautiously optimistic about our goals...searching for the light to lead our way.
Leaning on this verse:
James 1: 2-4   Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

Wednesday, December 14, 2016

IEP

We had Ruby's IEP redetermination today. It was a long meeting, first reviewing the findings of all of the tests and evaluations, then determining eligibility, finally setting IEP goals for what Ruby qualified for.

Lehr and I attended, along with Ruby's speech therapist through the school, the Occupational Therapist that evaluated her, the school psychologist that evaluated and observed her, the Special Needs Pre-K teacher, and the community based facilitator. Ruby was along for the ride, eating a snack and playing in the Pre-K room the whole time. (I was surprised with how well she sat for most of the meeting!)
There were no surprises in the findings for us; they agreed that Ruby qualified for Special Needs Pre-K and speech and OT. When it came time to set the goals, things turned slightly. Not from what we expected as much as what we agreed to. For most of the time leading up to the meeting, we have been so solid on maintaining what we've set up for Ruby in the way of inclusion in the typical (private) preschool. That is and always has been our goal. But I felt a very clear vision was cast in that room that demanded a different path to that goal. The team wanted several goals for Ruby, which lined up very well with the ones I had prepared in the past few months. In order to reach those goals, they asked for Ruby to receive speech one hour/week and OT 30 minutes/week. The OT stated that Ruby's scores did not qualify her for that much speech, but she wanted her to receive that support to boost her abilities in the classroom without support. When it came to determining how Ruby's Special Needs Pre-K schedule would look, they suggested 5 days/week.

Yup. Big change.

That is not at all what I ever said I would do. It's not what I planned on. But this team set goals that I think will help Ruby get to full inclusion. Four of the members of this team have met with me and talked to me about my vision for Ruby. Four of the members of this team have observed and/or worked with Ruby already and know her strengths and weaknesses. One of the members knows the private school she's attending, and has worked with her teachers specifically. They are not basing their suggested plan on results from a one-day evaluation.

We want Ruby to be in the 3-year old class at Mt. Zion next year. In order for that to happen, she needs to be potty trained. It is embarrassing for me to admit that I have not been able to succeed in that venture, despite working since this summer. I am aware that Ruby's current schedule of Mt. Zion and speech and gymnastics and more speech does not allow for much consistency in the way of training, so this 5 days/week in an environment that supports that goal will help. Also, for Ruby to be successful in a typical preschool with other verbal kids, she needs to have more practice with attending to tasks and sit-down time for longer periods of time. She needs more practice with using her words to get her needs met. She needs more practice with fine motor skills regarding writing and scissors in a classroom setting (not just at home). The realization I came to in that meeting is that we can either address those goals for the rest of this year, or struggle through this same process next year.
I know there are no guarantees. And I know that some (maybe all) of these things are possible struggles for Ruby next year and years to come. But we've been working on them with our current strategy since June with progress, but not success. I think we owe it to Ruby to try a new strategy for this semester to see if it speeds the progress. It is not our intention to hold her back in anyway with this new plan; we see it as equipping her with an extra boost to return to Mt. Zion next year, better than ever.

Saturday, December 10, 2016

The Build-Up

I have not been blogging as much the last few months. Life is busy, as it is for everyone. In addition to our regular 'busy', my downtime has been a bit consumed in praying, researching, planning, preparing, reading...all things associated with Ruby and what her schooling and therapy should look like right now. Specifically, when it comes to public services.

So we've been weighing the pros and cons of her speech therapy, of her extracurricular (gymnastics, soccer, etc.), of her private 'typical' preschool class, of her other speech therapist (who has also been acting as a facilitator on occasion in her typical class), so on and so on. When we started the process of Ruby's public school experience, she was not found to qualify for anything more than one hour of group speech therapy each week. We didn't agree with that (as we knew the reasons why Ruby scored so high were not a realistic picture of what her school experience would be), but recognized that the team that would ultimately work with Ruby, the team that was making these decisions, had never met Ruby - they had only seen the evaluation results from another team. So we agreed to give them some time (six weeks) once Ruby started services (speech) in the fall to collect the data they needed and then we would call for another IEP.
This process has taken a long time. That's a painfully long time for those of us that are impatient, especially when it feels like we've been waiting since May. In reality, we called for the IEP redetermination at the beginning of October, over two months ago. We met a few weeks later to discuss the path to get there, had a few new evaluations of Ruby (psychological and OT, and a new speech, based on her current level), had 2 or 3 observations taken of her in her private Preschool class, filled out more paperwork and online questionnaires about Ruby's levels, abilities, etc., had her teachers fill out more paperwork. All of that will culminate in a meeting for IEP qualification and redetermination this week.

It feels like we've been studying for finals all semester, but without a real clear picture of what subjects will be covered. Even though we received some of the reports from the evaluations, the interpretation of them from the team may differ significantly from ours. It did last May; Lehr and I did not expect to be denied services at that time, even based on her star-student evaluation. I don't feel this is an act of deception by the team, it's just the reality that Lehr and I are inexperienced in these types of meetings, so we don't know what to expect. Friends that have gone before us have mixed results, causing some cause for cynicism, but we are hopeful.
At this time, we are praying for a clear answer of what will best benefit Ruby. We think that is her private Pre-K with a facilitator 3 hours/week, in addition to speech once/week and OT once/week. Whether or not she attends special needs Pre-K also is something we go back and forth on; we are open to hearing the team's thoughts on how that works into our plan for Ruby's full inclusion for Kindergarten in a few years.

Wednesday, November 30, 2016

Clockwork

This girl.
Her brain is always working. Constantly taking in her surroundings and applying her skills, her knowledge, her experiences. I can see it in everything she does: every moment of play AND disobedience.
At the root of Ruby is such an intricate clockwork...it reminds me of her sister. When Maddux was little (and still!) she would say the most random things and they would often come out of left field, indicating she was thinking great amounts of things in her momentary silence. Ruby does the same thing, even though she doesn't have all of the words yet. She will sit down to eat with me and 'talk' as she acts out something she's remembering from our last meal together, or something she saw on our errands. Ruby will remember something specific about every place we visit, every person we meet, and she'll repeat or point out that something every time she's there, or mimic it when she sees that person again.

Here are a few examples of her inner clockwork:
  • When I do flashcards with her, not only does she tell me what the word is most of the time, she hops out of her chair to go find or point it out to me in the house too.
  • Every time we pull into the neighborhood, EVERY time, Ruby says, 'hooohhm'. 
  • When we tried on our snow gear this year, the kids put a pair of ski goggles on Ruby. They told her they were goggles, so she immediately lay down on the floor and pretended to swim.
  • She will tell me ("sahhhh") if she sees someone (in person or in a book) that is sad, and she'll make a sad face.
  • While Ruby was in chemo, there were occasional eye drops we had to administer. I would lie Ruby on the floor and 'hold' her arms by her side with my knees, though she didn't mind too much. The other day I had to give her some drops, which I told her about at the end of lunch. As soon as I got her out of her high chair, she ran over to the carpet and got on the ground, pointed to her eye as she squinted and said, "eye". That girl still remembered.
  • She watches those around her with intense absorption: Maddux wore a button-down shirt today and wanted me to cuff her sleeves. Ruby watched me quickly unbutton the sleeves at the wrist and fold them over twice. As Maddux walked away. Ruby pinched her wrists (she had on a long sleeved t-shirt) and held out her wrist to me to fold.
  • When walking upstairs with one of her baby dolls this week, she started by holding the doll's hand. Then she asked, "shoo shoo?", and put the doll on her shoulders and she said, "sssshoooo!". Guess what I do when we go up or down the stairs? I give her the option of walking, holding hands, or "choo choo", on my back.

Monday, November 14, 2016

Clowning Around

I had the unusual opportunity to photograph some clowns last week. While Ruby was in the hospital last year, we were entertained several times by Atlanta Clown Care.
 Ruby absolutely loved the clowns, and I loved taking pictures of their interactions.
The organization used some of my photos on their page, so they had my contact info. About a month ago they called me to request more 'official' photos. The Atlanta branch is starting a new venture (same 'service', different name) and can't use any of their old promotion stuff.
When the clowns visit kids in the hospital, they entertain and leave them with what I would call trading cards. They are small cards that contain a photo and the clowns name and a few 'fun facts'. All of that must be redone for for this new company, so they were in need of a photographer.
I was happy to oblige; the service they provide hospitals and patients is one that is very valuable in my eyes. Once we confirmed the date and time, my clown contact begged me to bring Ruby along. And when I told her that I never bring my kids because they would likely distract me, she assured me that with about ten clowns around, Ruby would be plenty distracted herself and it would not be a problem.
So my sidekick and I packed up for the afternoon and drove south. Ruby was smitten with all of the make up, the clothes, the music, the heart and soul. She kept throwing one of the juggling balls with one clown, then sitting and listening to another play guitar, then laughing at the antics of yet another.
As we were finishing, they asked for Ruby to be in a few photos as well. She hopped in and acted like a total pro: seriously, I didn't have to place her or guide her or anything... First photo shoot with Ruby was a total success!