Tuesday, August 23, 2011

The parents on the bus...

...did not say "I love you" this morning!!

Your ride to school did not go well today. About 10:30 I got a call from Mrs. P (your nurse) saying that you had a rough morning. Apparently I was wrong and there is one other student who gets picked up after you. I didn’t mention earlier that the bus was almost 30 minutes late picking you up—it was the first day and the kinks are still getting worked out with traffic and such. When the bus arrived to pick that student up, the parent gstarted yelling at the bus driver and attendant for being late. You have always been intuitive and sensitive to others emotions, and your feelings were hurt by this exchange. You started crying to the point of vomiting, and didn’t let up for most of the morning. Every once in a while you get so upset that nobody can console you. As soon as you seem like you are feeling better, your eyes will well up and that pouty lip will come out again. This was one of those times. Your teachers at school went easy on you, rocking and cuddling most of the morning. When you made it clear you didn’t want to get in the stander, they took you back out. When the call came in, you were pacified, side-lying on a boppy holding a stuffed animal. Tomorrow I will send a Lambie to stay at school.

Who DOES that? I mean, really? Thirty minutes makes an adult feel justified in getting on a special ed bus to pitch a fit? I am blown away. At first I was really sad thinking of you exposed to that angry parent without a single person you knew to comfort you. Mrs. P said she thought you probably weren’t used to that tone of voice and I laughed saying definitely not. You can’t see or understand words well enough in that situation to know who the anger is directed at—for all you knew that person was yelling at you. Right now I am just so aggravated with that parent. And I feel horrible for their child imagining what their home environment must be like. Tragic.

After school you were the only student on the route home (whew!). But because of issues with the bus lift strap, you left the school campus 40 minutes late. But it was repaired or a new bus came—I am not sure which—and in the meantime you waited inside with your teachers. That sort of thing doesn't bother you one bit, and I really do understand also. But goodness, this was not a good introduction to the bus for us!

I’m looking forward to talking with your morning bus driver tomorrow and getting more details on what the plan is to prevent this parent from coming within earshot of you again. I’ve got a plan of my own if they need any help brainstorming.

The Wheels on the Bus...

You had a terrific first day of school! Your teacher will send you home each day with a note listing your morning’s activities, mood, and level of participation. Your nurse will send you home with a communication journal telling me about things like diapers, when your feed ends, any concerns health or behavior. I am going to so look forward to these notes each afternoon.

It looks like you did more yesterday than we get done all week! You played with textured materials, vibrating objects, shiny objects, switch toys, books, painted, played with shaving cream, stood in a stander, practiced rolling, used tumble forms, the motion board and PT came. Whew, what a morning! You got all 5’s for participation in circle time (meaning you independently participated), and 2-4’s for participation during the structured teaching portion (meaning you needed verbal, gestural, and/or physical cues). Your teachers learned that you like shiny things, rocking motion, and are a happy, smiley girl!


The new thing for today, and the scariest part for me, is the school bus. Here you are all loaded up, watching out the window for your ride.


And when we got impatient, we went outside to wait. Mistake. It was already too hot and muggy for you at 7:30 in the morning. But you trooped through to take some pictures. I didn’t realize my lens was smudged until I downloaded them, so they are all a bit blurry. I will ask Grammy to take more pictures when she gets you off the bus this afternoon.




SUCH a big girl!! In this picture you aren't smiling, but you did think the sounds the bus lift made were pretty funny. You will do great on the bus. You are the only child, and an attendant is right next to you in case you need to be suctioned. And the timing is such that your tummy will never be full while riding--hopefully vomiting will be a non-issue.


Your brother was very uncertain again this morning. He understood you were going for a bye-bye, but couldn’t figure out why he wasn’t going with you. Here is an unprompted “I love you” sign. (He hasn’t figured out how to put down just his middle and ring finger, so it looks like “3”. But it really does mean he loves you.)


And here he is waving until your tail lights disappear. Come home soon Sissy!

Monday, August 22, 2011

First Day of School!



The day didn’t go exactly as planned, but when does it ever?



You woke up at 6am—a smidge earlier than necessary. I was hoping you could sleep till the last possible moment. With about 20 minutes to go before walking out the door, Liam woke up having thrown up in his bed. I have no idea why, he felt great. But a bath was definitely in order. And then despite leaving 15 minutes late, we arrived at the school 15 minutes early. There was no traffic and we made record time. That called for an impromptu stop at Starbucks.



Then we dropped you off. It was faster than I expected. We pulled into the special ed circle (which is great by the way—totally missed car line) and started unloading your things. Daddy met your teachers and I gave some last minute instructions. Once you were in your seat, we snapped a few photos. Thankfully you gave a pretty smile early on—I didn’t want to be the obnoxious parent who insists on taking picture after picture until we got it right. I didn’t want to be that parent, but I would have been if that’s what was needed.



We pulled brother out last minute to take a picture and give you a kiss. He got out excited, but when we told him to tell you goodbye, I could see the confusion on his face. His usual cheesy grin was hard to draw out, he just kept looking at you like he wasn’t sure what was happening. Eventually he gave you a kiss, but when Daddy put him back in the car seat, he really started throwing a fit. He kept crying, saying your name. In fact the whole way home he asked, “Where See-see?” Never before have we dropped you off somewhere and left without you. He knew your car seat should not be empty as we drove home.



I started typing in my post last night that Daddy and I might be emotional, but Liam would be fine. But then I deleted it because I figured that went without saying. Boy was I wrong. I think Liam’s distress distracted me from my own feelings. I didn’t feel sad until we pulled into the driveway and I only unloaded one baby from the car. And it wasn’t so much sad as it was just a little lonely. For three years it has always been you and me. Even now I find myself keeping an ear out for you to throw up or your machine to beep. Instead all I hear is a ruckus from your brother (I have a feeling I am about to find every book you two own scattered across his bedroom floor). He and I are going to stay busy until it is time to pick you up. We can’t wait to hear all about your first day at school!

Sunday, August 21, 2011

School Daze

Tomorrow you start school. SCHOOL. I have had several moments of “Oh my, what have I done? This is crazy!” followed by moments of clarity when I know how wonderful school will be for you.

I didn’t run out to get the few things you needed until tonight at 8pm. I had forgotten it was tax free weekend. Rookie mistake if there ever was one. Maybe it was denial, or maybe I was just holding true to my procrastinator fashion. Regardless, in less than 11 hours my big three year old girl (who is the size of a little three month old girl) will be in her new classroom. Daddy, Liam and I will drop you off tomorrow, and then Liam and I will pick you up three hours later. Yep, just three hours. But it will be three hours of hard work.

Tonight we will all try to get some great rest, because tomorrow is a huge day for everyone. You will most likely come home more exhausted than you have ever been in your life and I may or may not be an emotional wreck. I’ll skip the mascara, just in case.

Tuesday, August 16, 2011

Wonderland Indeed

Today we finally went to Morgan’s Wonderland here in San Antonio. It exceeded expectations.


We arrived at 10:00 when the park opened and there was no line. They recommend you make reservations because they don’t allow the park to be overcrowded. Plus it is faster to fill out your essential medical needs online (they have a first aid station that can help with much more than a scraped knee). Before entering the park everyone in our group was given a wrist bracelet with a tracking device. There was one scary moment when I couldn’t find your brother and the volunteer asked if we wanted her to look for him. I thought she meant with her eyes, but she meant on one of the kiosks stationed throughout the park. We found him a second later (in the sensory car, his favorite thing) but it is so great that all you have to do is swipe your bracelet and it will locate everyone in your group on the park map. We didn’t need it then, but we tried it later just for fun. After checking in, we headed out to play. Straight ahead are two huge playscapes, 100% accessible for wheelchairs. The whole area is covered in UV protecting canvas tarps for shade. There are multiple sensory activities like rain sticks, sand hour glasses, marbles that make sounds you loved. We pushed you around the playscape with brother while he explored. There was a fun platform where we could sit and rock while you sat in your wheelchair between us. We did the playscapes for quite awhile until Liam discovered the carousel.


The carousel, like the rest of the park, was also completely accessible. We wheeled you up onto a platform where your chair was secured by straps. I sat on the bench with you and as the carousel went around, we rocked back and forth. You loved it! After we went once, we picked up a couple more riders and went for round two. By then you and I needed to find some AC for a break. On to Sensory Village.


Sensory Village is a building full of lights and sounds and textures. Inside are a stable, grocery store, auto shop, weather station and…well, I don’t know what to call the other room. The biggest hits for us were this mystery room and auto shop. The auto shop had half a built out car with buttons to start the ignition, radio, air. Projected on the windshield was a driving scene that shifted when you turned the steering wheel. Liam could have hung out there all day. There were tools that made the appropriate sound the second you touched them. And there was a computer screen to decorate your own car. We swiped your bracelet so it would know your name, and here is yours! When I checked my email later, I found all of our cars had been emailed to me.

The last room was very dim and each wall had a large screen with a projector. The first screen had blue tadpoles swimming around on it. But as somebody walked (or wheeled) up toward the screen, the tadpoles would swarm around that person. The second screen had colorful butterflies that would settle on your shadow if you stood fairly still. And the third was your favorite. It had falling rocks that made the sound you would expect gravel to make. We were able to “catch” the rocks and then drop them at once. Pretty cool technology. (These pictures don't begin to do it justice.)

After a snack (they encourage you brining in your own food/drinks but have a concession stand) we headed out to the train station. We could have loaded up your chair there, but decided to take you out and hold you for a break. We went around once and the conductor gave us an overview of the park—it was a good chance to see where we wanted to go next. Again, we just stayed on the train and went once more after arriving at the station.


Next we went to the Pirate’s Cove (another huge playscape) and then the Wharf. The Wharf is a dock out over the water where you can drive remote controlled pirate ships, shoot water cannons, and fish (we passed on that but apparently people catch HUGE catfish). The whole area is shaded and has mister fans hanging from the ceiling. At this point we were pretty exhausted and the park was about to close. We had one last stop we needed to make before heading to the car…



The swings! We should have done this first and just stayed there, because Audrey, you LOVED it. It took only a moment to secure your wheelchair and once we got started, you smiled and talked and chuckled the whole time. It was so much fun to watch you thoroughly enjoy yourself.


video

By this time it was 2:00 and the park was closing. I had no intention of staying that long—we didn’t stay 4 hours at Sea World yesterday! And there was a lot left undone. We didn’t drive the cars (naturally, wheelchair accessible), go to water works, check out the sand pits (with sidewalks throughout for chairs to access digging tools) or walk around the lake and check out the themed rest stops. But it is smart for them to close during the heat of the day…they wouldn’t get much business then, and the park relies heavily on a volunteer staff. I loved this experience. So clean and spacious, safe and friendly, affordable and fun. I think this will be the best part of our vacation, by far. And we would have never discovered it without you Audrey Boo!

Monday, August 8, 2011

Soul Patch

You are good for my soul.  When I am sad that your little sister has SLOS, I look at you and know she will be beautiful and wonderful.

Friday, August 5, 2011

Playing Catch-Up

Audrey Boo. Your blog is so neglected. I have many posts partially written—just enough so that I remember dates and what happened. But I haven’t made the time to flesh them out just yet. I love you and will write to you VERY soon.

Wednesday, August 3, 2011

Summer Lovin'

This week we have done nothing at all, and it feels great. I love mornings when we can wake up, leisurely get breakfast going, stay in our PJ’s half the day. Usually our days are filled with doctor or therapy appointments, outings or to-do’s. But this month of August we have almost no plans. I am so glad we decided to take some time off therapy, and just work by ourselves at home. Soon school will start and we will need to kick it into high gear. But let’s not think of that while there is still summer to be had...