Give Kids The World Village

This could be a very long post. The Make-A-Wish trip we were afforded last month was amazing and it was only in part due to the cool experiences the kids got at the theme parks. Our lodging was at Give Kids The World Village, and to say it was awesome just isn't enough. (Though Eli said that about 200 times!)

To start with, here is some background. When you take a Disney trip through Make-A-Wish, you don't stay on Disney property, but rather this amazing village, just down the street. Give Kids The World Village is a 79-acre, nonprofit resort (coolest, most kid-friendly resort ever!) that provides weeklong, cost-free vacations to children with life-threatening illnesses and their families. And when they say cost-free, they mean it. There is nothing you will pay for while at the village: food, entertainment, lodging...nothing.

The first night we drove in to see the above sign and this building. A volunteer came out to our car and directed us to follow her golf cart to our villa. (The villa was huge: two bedrooms, a kitchen, sitting room with TV, washer/dryer, and two bathrooms. The 'master' bath was in the kids' room and had a walk-in shower, two sinks and a jacuzzi tub!)

She let us in, showed us around, gave us dinner (it was 9:30PM but they knew we'd been flying during dinner time) and then sat down with me for a 30 minute 'orientation' while Lehr and the kids got settled in. At this time she gave me all of our tickets and buttons for the parks (along with verbal and written instructions), she gave me the rundown of the village amenities, maps, and answered any questions I might have not thought to ask. Plus we got a guidebook covering anything she said that I may forget (there was a LOT to remember!), and told me to call the desk when I needed a verbal reminder.

The next morning we got to try out some of the services available to us. We rode on a carousel (as many times as we wanted with no line), called for a ride to breakfast (golf-cart style, but extra long), walked into a free breakfast buffet (complete with volunteers standing around waiting for you to arrive so they can walk beside you, carrying your tray as you choose your food), and beautiful grounds to walk around in.

When we returned from Sea World that afternoon, we ate a free dinner (same set up as breakfast), played in a game room with interactive train sets, arcade games, pool and ping pong and 4 gaming systems and plenty of games, rode on more carnival type rides including a train that travels through part of the property, and we ended up at the Castle of Miracles. Every Wish Child that visits the Village gets to decorate their own star and go through the process of sending it to a star fairy who will place it in the Castle to remain forever. The next day, we were able to go back and visit Ruby's star, as the location was given to us (along with a souvenir star to take home). Ruby's star is in the blue room pictured below.

 In the Castle of Miracles there is also a spa where the kids could get airbrush tattoos, face painting, make-up or manicures. During our trip, Maddux got everything done at one time or another, and Ruby got one airbrushed tattoo.

Oh, and we finished the night up with ice cream. Because there is an ice cream parlor in the center of the Village that serves ice cream from 7:30AM (what?) until 9:30PM. We hit that thing at least once each day, and yes, we did have ice cream with breakfast one day.

The two other areas that I need to mention are the incredible playground and the pool. The playground is Candy Land themed and so so fun. Everything is bright and colorful and covered from direct sunlight. The big kids loved running around in there as much as Ruby did.

And the pool. The pool area was SO cool. Pictures don't do it justice. It is a zero entry heated pool that I think topped out at 4 feet. Several side areas so it never felt crowded. Beautiful landscape all around to make you feel very relaxed and 'tropical'. There are towels and refreshments available to you, courtesy of the volunteers, of course. And then right next to the pool is a HUGE splash pad that Ruby ran around in for close to an hour during her first visit. So many fun interactive parts to that. Just behind the splash pad is a really cool pirate ship that we're told is for shows/stages. I assume it is used during the Pool Party (we missed it while we were at Epcot).

 

Other things we got to take advantage of include movies in the theater (Maddux and I went to see Toy Story),

Horseback riding,

the incredible weekly Halloween Party,

Character Meeting,

and Village Idol.

The grounds are beautiful, and we missed out on a few things: fishing, mini-golf, the tuck-in service by the Village mayor (a bunny character comes to your villa and reads you a bedtime story), some of the cool night events...but the things we got to do will remain in the kids' memory forever. (And if not, there are photographers at all of the 'main' things taking photos for you that they put on a disc before you leave.) This village is amazing.

There are no details left out; every surface, every experience, is designed to bring joy. The Village sneaks gifts into your villa every day for the kids, like a secret Santa. They knew we went to Sea World, so one day the girls got 'Barbie Doll' Animal Trainers with a Killer Whale. Another day they got legos and a Candyland game. There are volunteers tripping over themselves to serve you at every corner. And everything is wheelchair accessible and kid-friendly. The tables are low, the chairs are small, the doorways are wide, the rides have lifts...it's amazing.

And because they are aiming to 'give kids the world', they make the village so fun, so full of entertainment that even if the child's condition is one that prevents going to the parks, you could stay just in the Village all day and be totally happy. (We were sad we couldn't have spent more time there!) Here are a few (not even all!) of the events that happen every week  at the Village:

• Life-Sized Family Candy Land game
• Animal Encounters
• Halloween Party (they let you trick-or treat, they had a balloon manipulator, crafts, music, games!)
• Mayor Clayton's Birthday Party
• Winter Wonderland (complete with a visit from Santa and gifts...that was the night we left :(
• Village Party on the Pirate Ship
• Teen Activity Nights
• Family Game Show
• Storytime
• Pool Party

The list goes on...seriously. And in addition to this there is a breakfast/coffee cart driving around each morning, a cookie/milk cart at night, food delivery to your villa if you don't wan tot eat in the main dining hall, random puppets or art displays or people with telescopes or ANYTHING you can think of placed around property for you to find as you wander around. When the kids get a little older, I was to apply to volunteer there. Every day they log 1700 volunteer hours. All for the love of these families.

Make A Wish Trip

Where do I begin? There is no way I can sufficiently describe the amazing awesomeness that was Ruby's Make-A-Wish trip to Disney. The red carpet treatment extended beyond any boundaries I could have imagined when she was given the trip towards the end of her treatment last year. (During Ruby's hospitalization we were asked to apply for a Wish for Ruby, and shortly after she finished treatment, we were given the green light that she was approved for a Disney trip. We chose to wait until this week because of school schedules and our schedules and to allow Ruby to be as recovered from the chemo as possible.)

We flew to Florida on Friday night, where we were greeted by a Make A Wish volunteer escort. She walked us directly to the baggage claim and then straight out to the rental car lot where our car (and car seat) were waiting for us. This already felt like star treatment. We then drove about 40 minutes to the Give Kids The World Village (I will dedicate a whole blog post to that place later!) where we were again greeted by someone waiting specifically for us. There was a to-go dinner in our 'villa', and a volunteer walked me through a brief orientation to give me all of the details we would need for the week.

At our disposal, we had several days of tickets for the Disney parks, Sea World, Universal Studios/Islands of Adventure, and many other 'smaller' Orlando attractions. In addition, we had free parking, free photo services, and some perks at each park. The best perk? The mack-daddy of all fast passes at each park. At Sea World it meant getting preferential seating at shows if we wanted, trays of fish to feed the sea lions and sharks, and first dibs in line for any rides. At Universal/Islands of Adventure it gave us first dibs in most lines, and special parking. And at the Disney parks it was a Genie Pass which gave us preferential treatment for photos around the park (including the photo files), fast pass lines for any rides at ALL times, and front of the line privileges to meet the characters.

For reals.

Our first day we hit Sea World, where the big kids rode their first 'real' roller coaster. They didn't mess around either; they rode one that dangled their feet and turned them every which way, AND they rode it twice! We saw several shows, fed several animals, and even got rained on a little. Eli and Maddux loved the sea lion show most. That night we made it back for dinner and having fun around the village.

Lehr and I agree that the character benefits were by far the best, especially for Ruby. Not only did she get to meet way more princesses and characters than she even had a working knowledge of, but many of them gave her lots of one-on-one attention. Our first encounter was at Epcot with Jasmine. We waited in line for a minute, unsure of how to use our pass (we hadn't done that yet), and then Lehr decided to find someone to ask. That cast member not only brought us to another entrance, but she raced us around the back way to intercept Jasmine walking to her post so that Ruby could meet her in the alley and walk with her. Unbelievable.

And when it came time to meet Elsa and Anna? We were ushered into a back room to find Anna hiding from Ruby, so Ruby got to 'hide and snow seek' with her for a minute. The look on her face when she saw Anna was perfect. (This had such a lasting impression that Ruby looked behind the curtain a few days later when she met Rapunzel.) Needless to say, Ruby absolutely loved meeting these two, as they are the only two Disney characters she really knew about before this trip. The Frozen ride was a big hit with Ruby too, as she had the opportunity to sing along to Let It Go and see her favorite characters while she rode in a boat through the scenes. It was very dark in there, but I grabbed some video anyway to get her audio reactions. We stayed well after dinner, but not late for the fireworks. It was such a good day that we didn't want to push our luck.

The big kids definitely appreciated the benefits of having this crazy fast pass access too. Time after time we walked up and boarded a ride within 10 minutes of arriving, even though the lines for everyone else were estimated to be 50-90 minutes. This allowed us to cover a lot of ground at all of the parks.

The following day we opted to split up, leaving Lehr and Ruby at the village to swim and play while I took Eli and Maddux to Universal Studios and Islands of Adventure. The two parks are right next to each other (they share an entrance and parking deck), and they each have a Harry Potter section. We'd decided to focus on that park of the parks, likely not doing many of the other rides or attractions. It's a good thing too because we got three rougher rides/coasters in a row that messed with my equilibrium so much that I ended up sitting down for about an hour afterward to regain my balance. The kids loved the HP stuff, but around 3 they both agreed we should head home to play with Daddy and Ruby. We even managed to go in the pool before dinner because it was so warm out that day! Oh, and the village had an awesome Halloween party that night that we were able to participate in.

We followed that day up with the Magic Kingdom. Another day full of sprinting around the park, hitting many rides. We counted 15 rides, lots of character meetings, two sit down meals, one parade and the fireworks. Pretty impressive...totally a perk of having that pass! Eli and Maddux and I didn't get to Space Mountain until after the fireworks, but they agreed that it was worth the wait. They LOVED it and it was a great ride to end the day on.

Our last full day was full of rain, so rather than slop through another park, we opted to stay back at the village. Unfortunately we didn't get to golf because of the rain, and we only found one hour of non-rain to swim, but there were plenty of games to play, ice cream cones to eat, and naps to take to pass the time. Oh, and the kids got to ride on horses...Ruby LOVED that! After dinner we participated in a Village Idol show and then watched Toy Story in the theater next door. (Did I mention how cool the Village was?!?) Village Idol is where any/all kids that want to perform an 'act' get up on stage and then get feedback from judges (all positive). We saw everything from jokes to light saber skills. Eli, Maddux and Ruby got up and danced to "Bad Blood" - totally impressed that the big kids would volunteer to do that.

Our flight wasn't until after lunch the next day, so we opted to get out early and hit Epcot for a few hours before heading to the airport. After all, we'll never have the access with that pass again! We saw Elsa and Anna again, rode the frozen ride, and hit Test Track...a great end to a great trip!

Maddux

Still on our trip. Today the kids got to ride on horses, one of them with pink hair. This is the conversation Eli and Maddux had:

Eli: Pink horse. So weird...never seen that before. I wonder if it poops pink?
Maddux: (without missing a beat) Nope, it poops white. I saw it this morning

The Dogsitter

Ruby loves dogs. LOVES dogs.

Forever her favorite dog will be Mossy though. Right across the street, calm, old(er), and as tolerant and patient as can be as she puts up with Ruby's constant attention...it's no surpirse Ruby loves her so.

And when her family leaves town for the weekend, Ruby has her all to herself. Ruby will let her out to use the bathroom (and follow her around asking her if she has to go, then clapping for her when she relieves herself), Ruby will feed her water and her food, Ruby will pet her and love on her incessantly, Ruby will walk her, and Ruby will give her as many treats as she wants.

Conflicted

Our holiday break was so nice. Besides seeing so much of my family for a whole week, the five of us got to hang out and not give a thought to anything responsibility related. For me, that was especially evident in the 'time off' from therapy and school conversations and research about this that and the other. And for Ruby that meant time for her just to be her. Amen.

But when we returned we had a lot waiting for us. A new school for Ruby and registration for next year for Ruby. All within three weeks. Ruby's new class, a special needs pre-K at Maddux's elementary school, started slowly, with a few holidays and snow/ice days, but it was obvious from the get-go that Ruby loved it. Unfortunately, the first full week she had was the same week I had to register her for the following year at her previous (private, 'typical') preschool. Unsure of what exactly to do, I opted to register her for the 3-year-old class, 3x/week. She will turn 4 just before the school year starts, but I think that may be a better fit for her than the 4-year old class, where she would be the youngest in her class.

So here we are, now a month into her current school, and I'm conflicted. I've always been very pro-inclusion. Always in favor of starting as we intend to go. Always on-board with Ruby participating with all of her typical peers. That's why she's been at a private preschool, and that's why we've signed her up for it next year as well. But in the last month, in an environment that we've not wanted for Ruby, we've seen Ruby blossom in a really cool way. She has picked up some new words, spoken out more in school (her speech at school resembles her speech at home now, and it never did in her private preschool), she is rocking the potty training, and she is happy!

It's so hard to know what the right thing is to do. Do we continue to push her to be in a typical classroom because that's what we want for her once she hits Kindergarten? Or do we let her stay in her special needs pre-K because we know she is getting more help with the things she needs help with there in an effort to best prepare her for the typical environment in a few years? Do we fight for her to be in the private preschool next year so that she can learn how to speak up for herself and learn by watching others? Or do we give her more opportunities to be with the teachers that are trained to help her learn her way?

Too many good arguments on both sides of this, and my brain hurts each night after running through the list of pros and cons on both sides constantly all day. For now, we have decided to continue to enjoy the great things we are seeing for Ruby in special needs pre-K. When we have our IEP in May, we will weigh everything again and see where Ruby is at that time.

Pirate & Princess Ball

Ruby has received many gifts, honors and recognition in the last 18 months because of her battle with cancer. Lehr and I are always humbled and usually feel awkward accepting any of these because it all seems too generous or unnecessary or something. But when I step back and view it from the outside - when I see someone else going through something similar - I want to give the same praise, love, recognition, so we try to be as gracious as possible.

Last night Ruby was one of eight honored guests at the Pirate & Princess Ball, benefiting Team in Training (Leukemia and Lymphoma Society). That meant that she and her family were invited to attend the event for free and be recognized 'on stage' with a gift basket. Lehr and Maddux had other obligations, so Eli, Ruby and I represented. 

I was a little apprehensive about the evening, given it's later start time (7PM) and the fact that I may be chasing Ruby around and wrangling her all night, in heels, but the Ball held a secret weapon unbeknownst to us: Princesses. Shortly after we arrived, Belle and Cinderella showed up and Ruby was mesmerized. She never let them out of her sight all night, and her greeting them for the first time was SO cool. She was humble and quiet - like she was greeting royalty or something. Once the ice was broken, she still gave them mad respect, but she danced and walked and held hands until we left just before 10PM.

When they called Ruby up, she ran through the aisle to the director and even grabbed the mic. No stage fright there! Ruby's former physical therapist was in attendance and was so kind to grab this video of the stunner on stage.

Father Daughter Dance

Maddux was so disappointed to miss her school's annual Father Daughter Dance last year, so she was very geared up to attend this time around. She even passed up the Princess and Pirate Ball to do so!

Daddy bought her a very cool, very grown up dress for the event and the two of them had a great evening, dancing, eating chicken nuggets, and taking pictures in the photo booth.

Keep On Trucking

We are still happy with the immediate outcomes of Ruby's new school situation. This girl is making HUGE strides in potty training - only two accidents total last week! Her verbal skills are improving daily, and she is happy, happy, happy.

It must be noted that Ruby is still a toddler, so she still has the occasional push or hit at school, and if someone is across the room building a block tower, she must run over and knock it down, very joyfully. But overall, she is adjusting well. She loves the kids in her class, she loves her teachers, and she leaves with a smile on her face every day.

However, the new school schedule means Ruby needs to be awake by 6:30am to arrive on time. This is about an hour earlier than she would wake naturally. While she doesn't seem to mind getting up earlier, it does mean that her body has already become accustomed to early rising, so our weekends are now 6AM wake-ups as well. Boo.

Fitting all of Ruby's therapies into her now more-full schedule has been challenging. We had to drop gymnastics, and fitting in both of her private speech therapists is a constant calendar game, but we are starting a literacy tutor at Gigi's Playhouse this week, and we are looking into private PT and/or hydrotherapy.

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.

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.

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.

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...

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!

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.

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.

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.