Welcome to my life

I just thought I'd share a day in my life. This day was fairly typical for me, and maybe for you too. Some days, like today, I find humor in the insanity. :)

6:45--Alarm went off. Rolled over and smacked Blake on the arm and said "First alarm"
6:52--Alarm went off. Rolled over and smacked Blake on the arm and said "Second alarm"
6:59--"It's 7 o'clock! I'm turning it off!" He got up and got in the shower. I hid my head in the covers and tried to sleep longer. Georgia had woken me at 4-something and it had taken awhile to go back to sleep, so I was super tired.
7:45--Alarm went off. Snooze.
7:52--Crap, I have to get up! I showered and prayed that neither of the kids would wake up and start screaming while I was in there. I have a hard time dealing with screaming in the morning.
8:15--Heard Nate talking so I went in his room and told him I was getting ready and he could come in my room "all by himself" anytime he wanted. (We're working on this.)
8:20--He came in my room all by himself! We went downstairs and got Nate dressed in his uniform for school, braces and shoes, teeth brushed. This morning to avoid a tooth-brushing fit, I made up a song called "Special Agent Toothbrush!"
8:35--We negotiated breakfast. (I have good reasons for brushing teeth before breakfast but don't feel like going into them.) Decided on french toast sticks and blueberries with milk. I also made some for Georgia, who was still sleeping, and put them in a ziplock bag. Made Nate's breakfast and put my purse and his backpack in the car.
8:45--Decided I really did have to wake up Georgia now. Poor thing was sleeping so soundly, but as soon as I started rubbing her back she immediately stood up, like "Let's go!" Got her dressed and carried her straight to the car. As we were passing the kitchen, she started saying "Milk! Milk!" Haha, I already had it waiting for her in the car along with her blueberries and french toast! Got Nate's coat on and put him in the car.
8:55--Pull out of the garage but see my neighbor's van spinning out on the street because it's iced over. Hmm. Are either of us going to be able to leave? I suggested she back up to a snowy part and then gun it. It worked! I did the same. When turning onto another street in my neighborhood, the back end of the car got away from me and we nearly went up into a neighbor's yard. Oops! Once we got on the main road, we were fine.
9 am--So, we were going to behavioral therapy, which is about a 30 minute drive to downtown. It's actually very close to my work. Everytime we drive there, I think about how crazy it is that after leaving there, I have to drive all the way back to our part of town to drop the kids off at the sitter, who lives 5 minutes from us, THEN drive 30 minutes back in the same direction we came from to go back to work. There must be a better way, but I haven't figured it out just yet. Nate likes the drive because we get to go through a tunnell and I honk the horn to the tune of "Shave and a haircut."
9:24--We weren't late! I held tight to the kids' hands as we walked across the snowy parking lot. As usual, Nate heard a train whistle long before I even registered it. He said it was a "very quiet train." I explained it was just far away. When we got in the building, as usual the kids thought the elevators were like a super fun ride. Inside, they are poised and ready and when the doors open, they both take off like horses out of a gate.
9:30--Miss Darcy invited us all in her office. As I was telling her about Nate's (challenging) week, they were playing Legos together in the floor. Nate threw one at her face, and she put them away. They practiced throwing a soft ball, and when Nate started getting too overstimulated from their game, she made him take deep breathes. We talked about his school situation and how we might handle his misbehavior with his teachers.
10:37--As we were toddling back to the car, I told Nate I thought a treat was in order. We stopped at Krispy Kreme for "donut balls" as Nate calls donut holes. Georgia really liked them too.
11:10--Got the kids to the babysitter. This was the first time we were able to fill out a timesheet for Nate's attendant care to reimburse her, so we went over that for awhile. As I was leaving, Georgia stood at the door smiling and waving and yelling "Bye! Bye!" (said in a very southern accent)
11:15--Arrived back at my house and as I was getting out of the car I realized I forgot to give the babysitter Nate's backpack! It was still in my passenger seat! Texted her that I would meet her at the school for drop off. You might be wondering why I went back home after dropping the kids off. Well, at about midnight last night, I remembered our Medicaid support broker was supposed to come by the house this afternoon after Blake got home with the kids. I couldn't stand the thought of anyone seeing my house in the shape it was in, so I spent the next hour straightening, vacuuming, wiping, etc.
12pm--Bekah called and said she would be happy to pack Nate a lunch so I didn't have to bring the backpack to the school. I said I didn't mind. I heard Nate saying he wanted Bekah to pack his lunch--he wanted a peanut butter sandwich and grapes and ...--so I said that was fine.
12:15--Bekah called and said Nate changed his mind and wanted his Thomas backpack and Cars lunchbox after all. :)
12:30--Dropped the backpack off with a teacher aid at school and went on my way to work. I already needed a nap. Called Blake and briefed him on the behavioral therapy session. We tried to make a game plan for what Nate's consequences would be if he came home on red again today, but we couldn't come up with anything good.
12:57--As I was pulling in the parking lot at work, I realized I forgot to pay the sitter for Georgia for the week! Where is my head?
1--Work, work, work. Good, interesting, productive day. I finished the newsletter--Yay! I heard back from a speaker confirming a class we wanted to have in Lexington--Yay! I had a great conversation and set up a face to face meeting with a key medical professional that we've been wanting to meet with for awhile--Yay! I worked on the speaker contract for our exciting keynote speaker for our Day Conference in April--Yay! And most exciting of all, I finally sat down and typed out the calendar of programs I've already scheduled for 2011, and it is AWESOME! Yay, yay!
5--Blake called to let me know that Nate came home on red again. Boo! When Miss Joan asked him to come to the potty, he said no. Then when they asked him to put away the toys at the end of the day, he said no. (Okay, obviously this is not good behavior, but it's not like he's demonstrating deviant behavior, you know? He's not hitting or biting or cursing ... he's being stubborn. Is this "red"-worthy behavior? Apparently. We decided the consequence would be no TV, and then Nate had to come up with further consequences. He chose no food. :) Blake said he couldn't withold food, so then they decided no music. Blake put up the drums and guitar. They ended up playing ball and reading and singing all evening. If he keeps coming home on red, we might as well cancel cable.
6--Our first board meeting of the year. We had a couple consultants there, and it was an interesting meeting that left everyone with challenging, good work to accomplish.
8:37--Drive home with a migraine.
9:30--Blake and I are ready for bed! As we went upstairs, we heard Nate talking in his room. I went in to check on him, and when I stroked his forehead I realized he was REALLY hot. Took his temp--102.9--and gave Motrin.
11:20--Blogging in bed, while Blake is snoring and Nate is laying beside me watching the Upside Down Show. Wondering why he has a fever, if he has an ear infection, if he'll need to go to the doctor tomorrow, if we'll need to cancel OT at 9 am, if they're going to cancel anyway because it's supposed to snow, and if I should go to Nate's school in the morning and talk with his teacher about the behavior issues.

It was a pretty good day.

Behavior ISSUES

Nate is making us feel like crappy parents. We have NO IDEA what to do with this child.

Before the holidays, I decided to look into a behavioral therapist for Nate, for two reasons: 1. to stop the screaming, and 2. to help us figure out how to potty train him. We started seeing Miss Darcy, and she is very sweet and is really getting to know Nate to address our issues.

In the meantime, Nate has experienced a lot of changes. We now have a new babysitter. We knew this would be a huge adjustment for both kids, but it was unavoidable. The new sitter, Bekah, watches the kids out of her home instead of ours. She is wonderful, and both of the kids adore her. Our schedule used to be that Blake was home in the mornings and I was home in the evenings, but suddenly (like the same day the kids started at the new sitter), Blake's boss told him his schedule had to change to 8-5. After a very stressful week, Memaw and GrandBob coming for a couple of days to help out, and much discussion, our schedule is starting to regulate again. Now I drop the kids off at Bekah's at 9:30 am, she takes Nate to school at 12:30, then Blake picks up Nate from school and Georgia from the sitter. On Fridays, Blake is off work and will (this starts this week) take Nate to both OT and PT back to back. We have one other therapy (behavioral therapy) that we still have to find a permanent time for. But you can see that this has been a huge transition for all of us, and Nate has a VERY difficult time with all transitions.

If I could describe Nate with one word right now, it would be "resistant." He has always been a very resistant child--since the time he was a newborn--but he goes through stages when it is so much worse. We attribute much of this to his sensory issues, but the reason for it doesn't help much when we're trying to figure out how to stop it.

For example. Two Sundays ago, I went in Nate's room when he first woke up, and as always, he asked what day it was and what we were doing that day. I told him we were going to go to church--"I love church!!!--then we were going to a birthday party--"Gasp! A birthday party? Will there be cake?"--and then Bible Study--"I LOVE Bible Study!" We were all set to have a great day. When it was time to get in the car for church, he changed his tune. "I don't like church. I don't want to go to church" all the way there. When it was time to leave church, he cried, "I don't want to leave church! I love church!" and I had to drag him crying out the door. Next it was "I don't like birthday parties! I don't want to go!" followed by "I don't want to go home! I want to stay at the birthday party!" As you might guess, he whined the whole way to Bible study and then had so much fun that I had to literally drag him out the door screaming when it was time to leave. Whew! That is an exhausting day. Seriously, nothing is easy with him. We have to fight over everything from brushing his teeth to getting in the car.

I have decided that this resistance is our biggest hurdle right now to potty training. He is totally resistant to sitting on the potty. The week before Christmas, we actually had a lot of success with potty training. I played a game with him that every time he sat on the potty *without whining* he would get a letter on his chart, and at the end of the day, he would get whatever treat we had spelled out. By the end of the week, I was giving him "bonus challenges" (he totally loved that) to try to stay dry for a certain amount of time, and he actually DID IT! I really think it's possible that he might be able to do this. He just WON'T! After that week, he just decided he was over it. After discussing it with Miss Darcy, we decided to take a break from potty training for now and to work in therapy on decreasing his resistance to all things, hoping that will decrease his resistance to the potty. Who knows--maybe I'll potty train both kids this summer.

But the behavior issues are now showing up at school too. They have this green-yellow-red system. Last year, he came home on green every day, which meant he was well behaved at school. Last fall, we had a couple of days where he came home on yellow, which meant he had to be warned about a behavior. Well, last week, Nate came home on red TWICE. One day he was making an annoying noise during a movie, and after asking him repeatedly to stop, Nate refused to stop. The next day, he refused to put on his backpack and walk down the hallway. So when Blake came to the pick up line to get Nate, he had to get Georgia out of the car and walk down to the classroom to make Nate put on his backpack and walk down the dang hallway to go home. We have had numerous talks about this and have given consequences, so imagine my surprise when today I found out he came home on red again. He first refused to go to the bathroom to get changed (he pooped in his pull up!) and then they asked him to stop banging his markers on the table and he refused. Sigh.

The rule is that if he comes home on anything other than green, he cannot play with trains or blocks (his two favorite things to play) for the rest of the evening. He gets very upset about this, so that means it's working, right? :) Then he would not listen to me tonight when I was trying to get him ready for bed, so he had to go to bed without his beloved story time. He was so upset and was giving me every reason in the world that he couldn't sleep. From all the way downstairs I heard him yelling, "My pillow is wet!!!!" I said, "Well stop crying!" (hehe) So I flipped his pillow over, but then he complained it was cold. He told me he wanted my pillow, and that I could sleep with no pillow. I assured him his pillow was fine, and he said, "No! My pillow is cold and wet and has worms in it!" What? :)

So tonight Blake and I are going to make a rule chart that shows what the consequences are for disobeying. This is hard.

Redefining Spina Bifida

Dear family and friends, just wanted to let you know about an opportunity to spread awareness about Spina Bifida and also buy *cute* stuff. A fellow SB mom came up with the idea last fall to sell a SB awareness shirt, and a SB dad all the way across the country designed the shirt. They sold them for just enough to cover the costs, but they ended up selling like 700 of them, and they sent a $1k check to the Spina Bifida Association! And now there are like 700 people around the country and even internationally wearing these shirts to spread awareness! Now they're doing another order, and I wanted you to know about it in case you'd like to participate. This time, you can choose from a t-shirt, hoodie sweatshirt, or tote bag. Again, the prices are low so everyone can afford it. This time, they will donate the proceeds of the sale to a local chapter. Whichever region sells the most, that SBA chapter will receive the money. Awesome!

I really love the message of this shirt. It's not that we just want people to know we love someone who has SB. It reminds us that our children, and all of our awareness efforts are *Redefining* Spina Bifida. The SB that existed 30 years ago? The SB that we all feared when we got this diagnosis? The preconceptions that people have when they hear those words? Throw all that out the window. Our kids are going to be able to accomplish anything in life, and their lives are going to be a testimony to God's grace and power.

So if you are interested in spreading awareness that our boy Nate and all his buddies are showing the world that Spina Bifida does not define us, please consider going to this web site and purchasing some merchandise. (It's really safe--I know this great woman who is crazy enough to do this sale). And in the comments, write "SBAK" so your order will be counted toward our chapter--if we get the most orders, the entire profit will go toward the programs that I plan and host for our Kentucky and Southern IN kids!

Redefining SB Merchandise

Georgia's first haircut

Georgia didn't even HAVE hair until, what, October? But I have been itching to get her hair cut because she was starting to develop quite the mullet. I thought I was being silly and had no real intentions of actually taking her for a haircut, but on Saturday I took Nate to get his cut and the lady cutting his hair agreed with me about trimming up the mullet. :)

Before ...

During ... (she loved it)

After ... (I realize, not much different)

The back curls up so cute now!

Here's Georgia in her cute little outfit Little Bitty Memaw got her for Christmas. :)

And one of Nate, with a couple cute stories. :)

Last week at school, they had pajama day. (It was a make up for Polar Express Pajama Day that got snowed out before Christmas.) Nate wanted to wear his pajamas to bed, then to OT the next morning, then to school, then to bed again! The next day, I was trying to change his clothes and he was telling me why he wanted to wear his pajamas again. He put his finger between the buttons on the pajama shirt and said, "See, it has a belly button pocket!"

That morning as we were coming down the stairs, Nate looked out the window and got excited about the snow! He said, "But there's no snow on the grass!" I said, yeah, it just stuck to the road and sidewalk. He said, "But I wanted it to be a marshmallow world!" Well, the next morning, as he was walking down the stairs, he looked out the window and saw snow covering everything! "It's a marshmallow world!"

First Day Back

to work, school, and babysitter ... was rough. :) Actually, everyone had a great day, but we're all exhausted. Part of the problem occurred yesterday. After church, we went out to lunch and got our bellies full before heading home. Blake went to work and Georgia went down for a nap, so I thought, I'll just lay down here and snooze a little while Georgia is sleeping and Nate is watching cartoons. Next thing I know, I woke up and it was 5:30pm! Georgia was still sleeping, and Nate was passed out beside me on the couch! Uh oh. Nate never naps anymore, so he wasn't ready for bed until 11, and I went to bed right after him, but I tossed and turned all night. That little Sunday afternoon nap wasn't worth it.

I was very eager to get back to work today. Having nearly two weeks off was much needed and just enough time to find a new sitter and get everything organized. But I have big plans for this year, so much I want to get done! We have a mini conference to plan, I want to get my Delivering the Diagnosis project going, I want to plan some things in eastern Kentucky ... seriously, so many plans that there's no way I'm going to be able to do it all, but I am going to try! I'm excited. And I've had those jobs that I dreaded going back to on Monday mornings, so I appreciate having a job that I'm excited about!

Nate went back to preschool this afternoon, and he told me that he colored and had crackers and water for a snack, and Trinity was on yellow for bonking her head, but Nate stayed on green. :) Okay then!

When Blake dropped Georgia off at the babysitter's for her first day, she fussed for a minute, but she waved bye to Blake and she was fine after he left. Bekah (sitter) sent me a text later with a picture of Georgia, and I was glad to see she was wearing clothes and not her pajamas! Then I noticed she had on a hairbow and thought my husband had been abducted by someone else who actually thinks about hairbows, but it turns out the babysitter put it in her hair. :) Get this--she MAKES hair bows! I love this woman! She said Georgia kept pushing the other two kids (including one of Bekah's own) out of the way so she could hug Bekah! How sweet! And Georgia does not usually get attached to people quickly, so that is impressive.

I really liked picking the kids up and have missed hearing about Nate's day right after school. But it was a few short minutes before everyone started completely melting! I think we all could have gone to bed right then. Both kids thought they were going to starve to death while I cooked dinner--even though I KNOW they both ate lunch and afternoon snacks.

Oh, and another lovely spot in the day--Blake's boss sent him a text that for the next two weeks, starting tomorrow, he will need to work 8-5 (he usually stays home with the kids in the morning and works 1-10pm). Ack! We just figured out this childcare thing, and now this changes everything! We can't just send both kids to the sitter because Nate has therapies 3 mornings a week. So tomorrow I'm changing my schedule and then Memaw is coming for a couple days, and both kids will go to the sitter on Friday. I don't know what we'll do next week--I'll worry about that later.

Anyway, glad to be back to somewhat of a schedule--it will just take a few days to get used to it again. And I think tonight will be an early bedtime!