Photos and updates, long overdue

My camera is getting fixed--I figured I would spend a little to get it fixed instead of several hundred for a new camera. But it is taking weeks, and I have missed Easter and our SBAK conference and so many moments I would like to have had photos of. All I have had is my phone. :( So I'll dump all the pictures I can find from my and Blake's phones and facebook. I'll add some overdue updates too. Work and life have been so consuming that I have neglected the blog. Sorry, grandmas.

I'll start with our SBAK Easter Egg hunt. (These are not from my phone! Photos by Kelly Davenport.)

This is our friend Caden, who just loves Georgia. :)

Then my parents came for a visit for Easter weekend, and they were brave enough to take the kids to Chuck E Cheese. They bought them a bunch of tickets to play games, and all they did was play on this slide for free, lol.

I was pretty happy with the Easter baskets this year.

And oh my goodness. The kids looked so adorable all dressed up.

 Georgia loved this little purse and carried it with her everywhere. I had a diaper in it for when she went to the church nursery, lol. I need to start making her carry her own diapers around all the time. She was also very serious about the hat.

Um, Georgia has this face. :) If you even raise your voice to her--like here, to tell her to stop before she ran in the road--her lip pops out and her feelings are hurt. I am told she gets this from her mother.

Let's skip to Mother's Day. We visited Memaw and GrandBob and had a great weekend.

Look at my pretty new dress from Memaw.

At Memaw's house, Nate gets to sleep in a twin bed (he's still in a toddler bed at home). At one point during the night, I heard him screaming (which is not uncommon) and when I went to check on him he was sitting in the middle of the floor. I got him calmed down and back in bed, and it wasn't until the next morning I saw this big bump and bruise on his forehead.

A few weeks ago, my friend Jenny and her little girl Ellie came to visit. The kids all had a blast together, it was so fun. We tried to get a group picture, and it was pretty funny.

Hehe, finally!

 The girls played a little dress up.

Usually there's stuff to update about Nate, but I thought I would talk a little about Georgia this time. :) She is 21 months old now, and she's SO big. First of all she talks so big. She has a great vocabulary and can communicate just about anything. And she's not just repeating us--she comes up with stuff all on her own all the time. Like one day this week I was loading the kids in the car and I asked who I was loading up first. Georgia came running saying "Meeee!!!!" Then as I was buckling her in, she said, "Mama, Nate's turn!" I'm biased, but I think she's very smart and clever. Probably the phrase she uses the most is "Where Nate go?" She loves her big brother.

Georgia can eat with utensils very well, and she's learning to drink from an open cup. You can tell how great she is at it from that big wet spot on her dress.

While Nate was riding the horse at hippotherapy, Georgia put on a helmet and said, "Daddy, a horse. Daddy, a horse." As in, "Daddy, go get me a horse." :) She's been watching Nate long enough that she thinks she knows what to do.

A few weeks ago she tried out a bike for the first time. She wouldn't keep her feet on the pedals, so I just pushed her like she was in a stroller. Eh, she's still little.

Georgia loves to play dress up. She will try on necklaces she finds in my room, random hats, anything she can find. Then she says, "Mama, wook!" The other day I had some clean laundry on the couch waiting to be folded, and when I heard "Mama, wook!" I turned around to see Georgia trying to pull up 3 pairs of boxer shorts up over her legs! She was so mad they wouldn't stay up! She also loves putting on Nate's braces when he's not wearing them, and she wears them as boots, and she will put on anyone's shoes and stomp around in them.

She learns to love dress up from the best--the 4 year old girl at the babysitter's house. :)

She also loves her babies. How sweet is this.

Two things I hear on a daily basis are, "Mama, sucker. Mama, sucker" and "Mama, chocwat. Mama, chocwat."

Okay, so the biggest news is that Georgia is starting to want to use the potty! We're not full on potty training yet, but she actually asks to use the potty, which is a nice change from begging Nate to use it. It remains to be seen whether this will encourage Nate to use the potty too.

(Forgive me, teenage Georgia.)

Ha! This is how fancy girls go potty!

A couple of Nate. :) One day Blake and Nate went to the zoo by themselves, and Nate was really into the map.

Nate's latest thing is to repeat everything you say, except he does it AS you are saying it. I don't know how he can possibly repeat as quickly as he does--but he ends up saying what you are saying, simultaneously with you saying it. It's really .... fun. Especially reading him a story book! We're basically reading it in unison.

 One day this week Nate and I were talking at dinner, and I figured I should start going over some of this stuff that the school system said Nate should know before he starts school. He already knows his address, so I tried to teach him my cell phone number, and let's just say he's not ready to memorize seven digits. Then I was teaching him what to say if someone asked him where his mommy and daddy worked. I told him to say the Spina Bifida Association for me.

Then on a whim, I said, "Hey, do you know who has Spina Bifida?"
Nate: "Um ... Jenny?"
Me: No, you!
Then he decided to go all re-Pete on me and start saying what I'm saying in unison.
Nate: No, you!
Me: No, you have Spina Bifida.
Nate: (at the same time) No, you have Spina Bifida.
Me: No, really--
Nate: No, really--
And then we both started giggling and I gave up.

Then yesterday I was telling him about our upcoming weekend and that we were going to a playgroup.
Nate: Will my school friends be there?
Me: No, our Spina Bifida friends will be there. It's just for kids who have Spina Bifida and their brothers and sisters.
Nate: Will Georgia be there?
Me: Yes, because she is your sister.
Nate: And I will be there because I am her brother!
Me: Sigh. Kind of.

It's just not sinking in. :) And that's okay. I just want to make sure that he knows that having Spina Bifida is not a big deal, but it is part of him. And I think the way to do that is to talk about it sometimes.

Anyway, the SB playgroup was a couple hours away in Bowling Green, and there is a time difference between here and there, and as usual I got mixed up. So we got there an hour and a half early. In my quest to find a kid friendly restaurant to stop at, I ran across ... a train museum! Poifect! Nate was so surprised--we pulled in the parking lot, and he started yelling about the train! He saw a train! And it was moving!

Inside there was a little museum and Nate's idea of heaven--a model train layout.

Georgia likes Nate so much that she dutifully likes Thomas too. I think her longest sentence to date has been, "Where. Nomas. Go. Nate?"

 The kids are both in the dreaded "why" phase now. It actually started with Georgia. I don't know where it came from, but a couple months ago she started asking why to everything anyone said. This week Nate picked it up too. Awesome. Now I get to hear why at least one time, sometimes twice, after everything I say!

Okay, you are officially updated! Oops, found one more picture. The babysitter sent me this on Friday after the kids had played in the sprinkler and were eating popsicles. It's a good life. :)

KINDERGARTEN!!!

What? Baby Nate is going to Kindergarten? I feel like I must be living in some future version of my life. He cannot be big enough. I guess every parent feels like that.


Today was the big IEP/Transition meeting for Kindergarten. You may remember a few months back that I was freaking out about our Kinder choices, and then decided on an awesome school. Today it was time to review Nate's progress over the past year, make goals for next year, and to plan for his transition from his current school to his new school. The meeting included 9 of us: me, his current teacher, his upcoming Kindergarten teacher (liked her), the Early Childhood Education special education director, his current and future speech therapists, his OT (who will continue to be his OT next year at the new school), a teacher from the special program he will be in at the new school, and a "placement specialist" who was leading the meeting. (The PT could not make it, but his current one will still be his PT at the new school next year.)

Nate has made a great deal of progress this year, especially physically, so it was nice to revisit where he was and compare it to where he is now. For example, this time last year, someone was holding Nate's hand to walk down the hall every day to lunch. At the beginning of this year, he was walking by himself, but carrying his lunch box made him off balance. Now, he is walking in line, carrying his lunch box. Now the goal is for him to walk at a steady pace instead of running a little, stopping for a few seconds, walking a bit, running to catch up, etc.

So if you are interested in what an IEP looks like, you can read on to see what we're working on with Nate. (I know I like to see other kids' IEPs to give me ideas.) If this bores you, skip down to below the line.

Goal #1: Given self-help routines and personal responsibility tasks and activities, Nate will independently participate in these tasks 80% of the time.

Translation: Nate was 2 (almost 3) when they tested him for preschool, and this is still the test they are going on. They will retest him next year. But basically, the only area that showed significant delays was "self-help" skills. This can be anything from navigating the school to putting on his jacket to minding the teacher to participating in classroom activities such as writing, cutting, pasting, etc.

Under this goal are several measurable objectives:
a. Will independently complete a classroom task, persevering when the task may be challenging.

Translation: Nate gives up easily, lol. For example, when the early childhood education teacher was asking him some questions to see how ready he was for Kindergarten, she had him name the numbers she pointed at. By the time they got to 10, he said, "I'm done with numbers." She moved on to colors, and he was like, "Can we leave now?" :) The truth is he can count to 100 with just a little help, and he's known all his colors and shapes and all this easy stuff since he was 2. But if he is bored or having trouble with something, he will either give up or throw a fit.

b. Given the task to transition with his class in a line in the school hall, Nate will independently maintain the pace and appropriate spacing with his peers.

Translation: As I pointed out above, he doesn't walk at a steady pace. His PT says it's because running is actually easier than walking, because you're just basically letting gravity propel you forward. We are also working on this goal in his outside PT (she actually has him walking on a treadmill at 1.5 miles per hour for 5-7 minutes) because it does get annoying to try to walk beside him, and walking in line is such a big part of elementary school. I like this goal. I was going to bring it up myself, but one of the therapists beat me to it. This is basically his only PT goal, and his school PT time was dropped in half from this year, to only one session of 30 minutes per month.

c. Will visually attend and participate in classroom task and activities without resistance.

Translation: Nate is resistant, lol. On a more positive note, Nate's current teacher and therapists all commented on how much better his behavior has improved over the last month. For awhile there, he was coming home "on red" every single day. Now he's on green every day, with a few yellows here and there. His teacher said he is much more compliant and less resistant. But we are still working on him following instructions the first time he is asked (including at home).

d. Will participate in directed activities, managing tools to complete the activities.
 
Translation: This is basically his OT goal. His OT is very happy with how far he has come in writing, coloring, etc. He can write his name, and also pretty much anything you spell for him. This past weekend I helped him make a card for his great grandma that read: "HAPPY MOTHER'S DAY LITTLE BITTY MEMAW LOVE NATE." It was all over the page, and I had to translate it for her, but he wrote it. OT is actually a bigger concern for me right now than PT because I have been concerned about his writing skills compared to other kids, but the OT said he was doing great, and she really thinks this may be the last year that he will qualify for OT in school! Nice!
 
Goal #2: Given 5 opportunities to communicate with his peers and teachers, Nate will interact with an adult or peers as both a speaker and a listener with 90% accuracy, during three consecutive therapy sessions.
 
Translation: When they wanted to give Nate speech therapy when he was entering preschool, I thought they were crazy. Talking is one thing he has not been delayed at. He has always had a great vocabulary for his age, he is easy to understand, and he doesn't shut up. However, their concern was his ability to communicate well. When they asked him questions, his answers did not fit the questions. Since he has been in speech therapy, his sentences have gotten longer (which was one of the goals, and is no longer a goal since he has met it), and I can tell his communication has improved. However, he is still not great at conversing with his peers. He will talk to adults all day long, but he largely ignores other children. He has started playing with other kids (mostly in the past year), but he's still in the "parallel play" stage where he will play alongside them but not "with" them. Nate's social abilities are one of my concerns, and where I hope he will really improve in Kindergarten.
 
a. ... the first objective is actually the same word for word as the #2 goal. The speech therapist said when she has him in a group, he will talk with her and will sometimes talk with the other kids ONLY IF they are talking about trains. :) But it's not really communicating.
 
b. Given 5 role playing situations, Nate will ask an appropriate question for a given situation (ex. Are you okay? after seeing someone fall) with 90% accuracy during 3 out of 4 trials.
 
Translation: Take an interest in people around you, kid! My mom and I have talked about role playing conversations with Nate before, but we would end up telling him to go up to a friend and say, "How are you?" Well, 4 year olds don't say how are you! We don't want to make him that wierd, socially awkward, too-polite kid. :) I think they're going in the right direction with this goal.
 
c. Given 5 opportunities to communicate, Nate will talk about something he has recently done, watched, or played with using at least two adjectives in his description with 80% accuracy during 3 out of 4 trials.
 
Translation: Okay, the speech therapist wants him using more adjectives, which ... whatever, great. But also, it is like pulling teeth to get Nate to tell you anything about what happened at school, or what did you do last night, or what happened in the movie. He usually asks you back: What?
 
d. Given 5 opportunities to express himself, Nate will explain why he doesn't want or should do something with 90% accuracy during 3 out of 4 trials.
 
Translation: Nate will use his words instead of screaming.
 
Nate will get speech therapy twice a week for 30 minutes at a time. Why so much? I don't really know.
 
________________________________________________________________________________
 
So, Nate will get 30 minutes of PT per month (Whoo! .. sarcasm), an hour of OT per month, and about 3 hours of speech per month. I really haven't cared so much about the amount of PT he gets at school because he also gets an hour of PT (hippotherapy) every week. But once Nate starts full day Kindergarten ... I don't think we'll have time for outside therapy. Gulp. He's been in therapy since he was 6 months old. I know I have to wean off of it at some point, and it's great that he doesn't need it as much anymore, but therapy has been a HUGE part of our lives for so long!
 
Back to the meeting. Then there was the question of whether Nate would be in the regular Kindergarten class all day or if he would be pulled out to the special classroom for anything. My initial, strong, gut reaction is that he is in the regular class all day. But then the "special program" (sorry, I can't call it by name, it's hard to not give away too many details on the internet) teacher said she would be teaching a "social skills" class for 30 minutes every day in the special education room. Well ... social skills are like our primary goal/concern for Nate, so it does make sense to pull him out of class to do some focused work on that with other kids. For some reason, I'm still hesitant about this, but I know I need to put aside my pride and stubborness about the issue and just allow him to get the supports he needs. That's why he has the IEP, and that's why we want him in this school. Also, the speech therapist will see Nate one time a week in this social skills group, so that means she will only pull him (along with a buddy) out of class for speech therapy one other time per week. I don't want him missing too much time in the classroom.
 
The only other "special" issue was transportation. They had him all set up for the special needs bus. Two years ago, Blake was adamant that Nate not use a special bus, and eventually I did see his point and agree with him. Nate was going to the neighborhood school, along with a bunch of the kids who live on our street, and if he was riding the bus, we wanted it to be the same bus as his friends. So we said that when the PT clears him to ride a regular bus (in other words, without a harness to keep him in his seat), we would revisit the issue. Until then, we would drive him. Well, they brought it up again today, and again I told them we would not be using the special needs transportation. They all looked at me like I was crazy, and I could tell they disagreed with me. And honestly, I think we're probably being a bit unreasonable. But really, we do not mind driving Nate to school at all. At all. We actually like it, and look forward to doing it next year. The Kindergarten teacher asked what about field trips. I said I would like for the PT to assess him to see if he's ready for the regular bus. They asked if we would consider letting him ride the regular bus daily if the PT said it was okay, and while I was thinking about it, they reminded me that would mean Nate and 5th graders on the bus with no aid. No. No. No. No. No. We will drive him until he's in college, thank you very much.
 
Can you tell I'm nervous about this and just have to talk/write it all out? :) But I really do know it's all going to be okay. For now, Nate is saying he doesn't want to go to Kindergarten and wants to stay in preschool, but he was excited this evening when I was telling him that I met his new teacher and she said we could stop by the class and visit one day before the end of the year.
 
Oh, and can I just say--How I wish I could show myself 2 years ago or 5 years ago how GREAT Nate is doing. Really, we are SO grateful and proud and relieved and amazed. It's so much more than we ever imgained. Days like this can be stressful and they sometimes point out the delays and deficits, but they are also nice because they offer benchmarks to see how far Nate has come, and how far our whole family has come. Kindy, here we come!

Really, really cool weekend

This has been a very busy couple of weeks. I don't think I've mentioned it on this blog, but SBAK has been planning a one day conference for several months now. At one point last fall, I told my boss I thought it would be so exciting if we could invite Aaron Fotheringham to be our keynote speaker and special guest. If you don't know who Aaron Fotheringham is, he is a 19 year old wheelchair athlete from Las Vegas who has Spina Bifida. He is known as the first person to land a back flip in his wheelchair. He's been featured on ESPN, the Today Show, etc, and recently a Nike commercial. He also travels the world doing his wheelchair tricks.

So I worked with Aaron's agent for several months to decide on a date, his fee, his contract, all that stuff. In the meantime, we were planning a full on conference. After I had most of the planning done, I looked at some other chapters who were doing education days and saw they were doing half days, one track of sessions, etc. Ohhhh, see that would have been much easier and more realistic than my plans for our first ever conference! :) I planned three tracks of sessions, with speakers from as far away as New York, AND we decided to offer it for free.

So the last few weeks have been wild at work, because we had two big events 5 days apart to plan, but last week in particular was crazy as I was putting together all the last minute details. I worked until midnight on Wednesday and Thursday, but at 11:55 on Thursday night, I marked the very last thing off my to do list. All the planning was done, and we just had to put the plan into motion.

So on Friday we packed up three vehicles with boxes and unloaded them at the church where we had the conference and started gettinng everything set up. In the afternoon, I had the opportunity to go pick up Aaron Fotheringham from the airport. I introduced myself and immediately could tell he is a very nice kid. He was very easy to talk to. But when we reached the escalators and I was veering to the right, he said, "We're going down, right?" I said, yes, the elevators are over here. He said, "I go down the escalator." Okay, I know some people who use wheelchairs go down escalators, but here's the thing. I am afraid of escalators. I fell down an escalator in London once, and it traumatized me. Even now, if I'm on an escalator, I prefer for someone to be in front of me (going down) so they can catch me. This guy is not scared. And notice he was in front of me.



Then I started walking toward baggage claim, but he had no bags. All he had was a very unfull backpack and a helmet hanging from the back of his chair. So we went outside, and a local van company was so nice to provide an accessible van and a driver for Aaron the whole time he was in town. By the time we got out there, the driver already had the ramp out for him. We could tell he really did not want to use it, but he did. When we got to the hotel, though, he jumped his chair out the other side of the van. And the driver told me that the next time he got in the van, he jumped his chair up into the van.

Anyway, when he got in the van, he saw my surprise for him. The previous day, I saw on Facebook that Aaron joked he was coming to Kentucky and wanted some KFC. So I had some KFC waiting on him in the van. Like I said, it was just a joke, but he was so thrilled with this chicken, it was funny! He immediately tore into the chicken. :) He thanked me like 4 times for the chicken and posted about it on facebook. I think we all must take our KFC for granted. You can also see beside him in this photo that we gave him a Redefining SB tote bag with some Kentucky gifts, like a miniature Louisville Slugger bat, a UK hat, a t-shirt from our conference, and some Kentucky snacks.

So when we got to the hotel, we asked Aaron if he would like to rest for awhile after his long trip. He was like, No, I'm not tired. Of course he's not. He's 19. If I had been on a plane for that long, I would have needed a nap. So the driver took him on a little tour of Louisville, and by the time I got to the skatepark that evening, an hour before our event started, Aaron was already there riding!

So that night, we gave Aaron the chance to ride at our Louisville Extreme Park. It's one of the top skate parks in the country, and he thought it was "sick." He said it was like his Disneyland, and he was considering taking a cab back out there in the middle of the night to ride more. He wants to fly back out here just to ride it again. :)

Anyway, we invited families to come out and meet him, and we had a great crowd, as well as some media! Yay! Aaron took the time to meet every single kid there and talk with them.

He also did some awesome tricks. No, he did not do a back flip. Actually it was in his contract that he would not do flips, and now I understand that it's not a good idea to try a flip at a new park that he's not familiar with. But he still totally wowed us, and he also crashed a few times and scared us! Halfway through, he decided he was going to drop in this huge bowl. He would sit there for a minute just looking down and, I assume, getting up his nerve. Then he'd just free fall for a few seconds and catch the wall several feet down.

Later I told him that every time he did that trick, my stomach dropped. He said, "Mine too!" He took lots of pictures with kids, signed autographs, and one little boy even interviewed him. His mom told me he was going to whisper to him, "Do you pee out of your belly button too?" Can you imagine being a little kid with SB and seeing this guy as your hero?

After the skatepark, a bunch of us went out to dinner with "Wheelz." We talked him into ordering a Kentucky Hot Brown, a local specialty, and taught him how to properly use the word "Y'all." Along with staff, there were some other families there, and I have not had that much fun in a very long time. I laughed until my face hurt. Aaron was really fun to hang out with.

The next morning, Saturday, was the big conference that we had been planning for so many months. In addition to the conference sessions, we also had a full Kids Camp with their own full, fun schedule. Nate had the BEST day ever--playground time, coloring trains, a music class, etc. Georgia did not have a happy day, and there were so many instances when I walked into her Kids Camp room to ask a question or help and she would spot me and attach to my hip.

We also had a vendor area, and we sold SBAK merchandise. We had an awesome t-shirt designed by Andy Gibbs, of Redefining Spina Bifida fame, lol. It was a lot of work, and I was hustling all day long, but everything went exceptionally well. Everyone learned a lot from the sessions.

Aaron did an excellent job with the keynote speech and got a standing ovation! He ended with "When life gives you a wheelchair, find a skatepark!" He was very inspiring. The audience was able to ask him questions too--everything from "How high is your mother's blood pressure?" to "How much of your legs can you move?" It was very interesting.

After his speech, everyone had time to get an autograph from Aaron. There was a ramp up to the stage, which was a couple feet off the ground, but I knew what he would do. He went over to the edge and just dropped off the side, lol.

At the end of the day, everyone had only very positive things to say about the whole day. They learned from the sessions, enjoyed the time to chat with other families, were inspired by Aaron, and were happy with the kids camp. The whole weekend totally exceeded my expectations.

It's Monday night, and my legs are still so sore it hurts to move! But I'm still thrilled about what we accomplished. And it was FUN.