Be nice to your kids, please.

I hope everyone had a very Merry Christmas! We had a great time being with family and soaking everything in as much as possible between gatherings and presents and crowds and cookie baking. I'm formulating what has become my annual special needs Christmas gift rundown, which I'll be sharing in the next few days! Christian got some good stuff! Lola can attest to that!

The holidays can bring out the best in us and the worst in us.

I'd rather talk about the best, but I feel I have to talk about the worst.

Holidays are a stressful time for everyone. They shouldn't be, but they are. People drive slow. People are in a hurry. Kids are wired on sugar and jumbled schedules and parents are just trying to create any sort of magic they can muster.

I see a lot of spirit and a lot of "nice," but I also see a lot "not nice."

Now I'm going to get all judgy and talk about parenting and I might even pull the "I would give anything..." card. I don't pull it a lot, but I feel it's appropriate.

I see a lot of parents being not so nice to their kids. You're right, I have no idea what's going on. I don't know what happened earlier in the day for you to get to that point.

And if I'm totally honest, I've probably been that parent. I lost patience. I might not have been so nice. Maybe someone thought I wasn't being a very nice mommy.

So I have to check myself.

There is a lot of talk about being kind and spreading kindness. Especially in the wake of the tragedy in Newtown. And when we think about being kind, we often think about spreading it to strangers. But I urge you to spread kindness in your own home. Be kind to each other. Be nice to your husbands and your wives. Be nice to your kids.

And I would give just about anything to have a rambunctious four year old boy that I had to yell at so he would settle down. Really, just about anything. Yeah, I pulled that card. I understand we all get frustrated. Trust me, I've been there. But I'm sure those parents in Newtown with unopened presents under the tree would give just about anything, too.

So watch your tongue. Watch your actions. Show love. Be kind. I promise to practice what I preach.

Be nice to your kids. Maybe if we're nicer to our kids, they'll become nicer adults and things like what happened in Newtown will be avoided.

Adventures in Eye Gaze Talkers

We have been gazing and gazing and gazing!

Not really. But Christian has!

Let me back up and revisit his big evaluation coming up at the end of January. Christian will be evaluated by a team for the perfect communication device for him. In the mean time, we're dipping his toes into the warm waters of eye gaze talkers. This means we set up three different consults with three different eye gaze device companies to see which would be best for Christian before the evaluation so we have more information going in.

And, just really quick, the eye gaze talker is a communication and learning device that functions off of reading the glint of the eye. Basically, where ever Christian looks on the screen, something will happen. However, he has to learn how to keep his gaze on a picture to activate it and, eventually, learn to look at pictures to communicate and essentially "talk."

We had our first appointment last week with the Tobi company. They came to our house and brought all of the equipment. It was very impressive but I didn't know what to expect in the first place. The rep brought a rolling mount so that we could get the optimal position for Christian to functionally use his vision and without much difficulty. Positioning is EVERYTHING. She was able to assess where Christian was using his vision and adjust the equipment accordingly.

Of course, my biggest fear would be that Christian didn't participate at all. That was only a fear, though, as I knew he would be able to do at least something and he absolutely delivered. Once we got his gaze calibrated, we quickly learned Christian would need larger pictures and a shorter reaction time. Meaning he couldn't be required by the computer to gaze for a long time to activate a picture.

We adjusted and readjusted and then found a program with four large squares. In each square was a musical instrument. We asked him if he could find the drum and make it make a sound. And then he did. Then we asked him to activate the guitar like Big Brother plays and then he did. His OT who has known him the longest cried a little bit. Because she's awesome. (Sorry I outed you, Kim!)

Today we met with another company called PRC. She requested that we meet at his school in his classroom. I was a little nervous about this because there is so much distraction in his class. But I guess he would eventually need to learn how to use the device despite the distractions so it was fine that we did the consult at school today.

Christian had an audience, too - his vision specialist, his teacher, his speech therapist, and his PT came to watch. No pressure, Christian! So, of course, the first twenty minutes or so he was pulled to the right and refused to participate. They also didn't have a rolling mount so Christian had to be adjusted to the device rather than the other way around, which was a lot more difficult.

I finally asked if I could hold him on my lap to see if he would start to participate. And it worked! Stubborn boy! As soon as I had him in my lap and not fighting his ATNR and extension, he not only started to look at the device, he activated it, and held his head up the entire time! The device was even able to be programed so that everywhere he looked, the squares would light up in red. It was constant feedback and encouraged him to keep exploring. He did great!!!

We have one more consult to go with Dynavox, but that's not until mid January. I liked elements of both systems, but the Tobi system did seem newer and larger. I also thought the rep from Tobi did a better job of conforming things to Christian rather than trying to conform Christian to the device. Big points for the Tobi rep! Also, the Tobi rep mentioned that there is a new system coming out that will calibrate the eyes no matter where Christian is looking on the screen. So he won't have to hold his gaze in a small space for a long time, which is very challenging for him.

This is all very exciting, but Christian is ready! He needs tools to communicate, whether it's switches, buttons, or a computer screen.

I'm taking the whole eye gaze talker in stride. It always feels like I have to prove that he is so smart and that he has wants and he has a voice. So a device like this makes it easier. When he activates it, it shows everyone what I already know. That he counts. That he matters. And that he may just have more to say.

Connecticut.

I left the house this morning with a few things to do.

We were originally supposed to take the kids out this morning. It's Lola's birthday today and I was planning on attempting a trip to the nail salon so she could get her first pedicure. And a stop a Starbucks for a strawberry milkshake.

But Christian caught a little bug and it was really cold and rainy today. So we scrapped the plan, I went out by myself, and the kids stayed home with Nana, Christian resting and Lola enmeshed in her new Candyland game.

During my outing I heard about the horrible school shooting in Connecticut. Little kids. Just gone. At that very moment I just wanted to be with my kids.

I left the house this morning with a few things to do. I wanted to get Lola a cake for her birthday because I firmly believe everyone should have cake on their real birthday.

I returned with tiny birthday cupcakes, big hugs, and promises of homeschool.

Only half kidding about that. Okay, about 70/30 in favor of homeschooling.

I know what it's like to have a very normal, conventional life one minute, and then a nearly unrecognizable life the next. Not only was the rugged ripped out from under us, but the floor beneath the rug had caved in, leaving us weak and vulnerable. Literally bringing us to our knees. There were whispers and facebook posts advising everyone to hug your babies tight tonight! And then those who whispered and posted got to return to normal life and we didn't.

Here we are, comfortable in our normal. But with the perspective of being on the other side of normal, it goes beyond simply hugging my babies tight. Today I carefully watched Lola ride a merry go round. I watched her face light up and I watched her wave to her daddy and brother every time she passed. I watched her absolutely love it. I watched her as if it were in slow motion. And I thought about those families who won't have that ever again.

I thought about how other people must think I have it so hard with Christian. He doesn't say, "I love you, Mommy." He doesn't throw his arms around me. But he does snuggle, and he does reach out, and calm when I hold him. That's how he tells me he loves me. He tells me every day in  his own way. I have that. It's not gone. It's here and it's real, breathing softly next to me. Today it's not hard. Today I'm lucky.

My teenager sent me a text that there was a rainbow outside today. I asked him if he meant to send that to me or a girlfriend of his. He said he sent it to me because he knows I like rainbows. I'm still skeptical. But it was a gift.

I think about these kids and these families and, to be honest, I can't fully process it. We've had a challenging week, but all of the sudden, with healthy children safe and sound, texting me about rainbows, looking at me when I talk to them, choosing a rooster to ride on the merry go round, those challenges just don't seem very challenging anymore.

We are so lucky. Life is so very temporary, and so very precious. It's not just a tagline. Things can change from one second to the next.

God bless those families. And, yes, hug those babies.

Christmas Tree Therapy

The tree is up!

And signs of Christmas have unloaded themselves on to my living room windows, mirrors, and ceiling...

Lights are everywhere! I hung them from the ceiling last year thinking Christian might like to look at them when he's laying down. So we brought the ceiling lights back this year and I love them. They look great paired with my coffee filter snow flakes! Lots to look at for all the kids, but especially for Christian.

Something else happened!

Christian put an ornament on the Christmas tree for the first time ever! It took a team to make it happen, but doesn't it always?

Christians OT's and Speech Therapist were there helping him and I'm not quite sure they totally understood just how monumental this moment was but they were a huge part of it!

And he was kind of playing along, maybe actually enjoying it.

Thomas the Tank Engine hangs happily next to Cinderella at the bottom of our tree. Lola and Mommy had a special date last week that consisted of a Strawberry milkshake (Strawberries and Cream Frappuccino), a "brown, coffee drink that's mixed up" (Lola's translation for Mommy's Starbucks drink), and a trip to the ornament section of the store. She chose Cinderella for herself and Thomas for Christian.  

And they lived happily ever after.

I think Christmas tree therapy has been a pretty cool method of therapy. It's totally sensory, it's in Christian's reach, he can feel it, touch it, and see it. And Lola kind of likes it, too.

Oooooh, Christmas tree therapy!

We like!

Thanksgiving Recap

We are a week out from Thanksgiving and I'm diving head first into the Christmas season. But let's revisit Thanksgiving weekend again because it was pretty great, despite Christian getting over a cold.

Yeah, he got a cold. Remember when we cancelled the surgery because we were all sick and we didn't want him to potentially get sick while recovering from a surgery? Well, guess what...he got sick. Double ear infection, weird seizure activity, spiking a temperature sick. Christian really doesn't get sick that often
(KNOCKING ON WOOD!!!) so when he does, the symptoms always throw me off a little. But when it's all said and done, the fever paired with funky seizures and irritability are pretty much normal "sick" behavior for Christian.

Anyway, Christian had to be out the entire week of school prior to Thanksgiving but with a stiff shot of antibiotics he was on the mend. Just in time for Thanksgiving!

And he wants you to know...

We're not vegetarians, by the way. He still looks awfully cute fending for the turkeys. And you know he got some Thanksgiving dinner in his blends, right?

After the Thanksgiving Day parade I put him in front of the annual dog show. To my surprise he was pretty interested! He vocalized a couple times, stared at the show rather than gazing off, and was waving his hand. So Christian likes the dog show. Who knew?

Every Thanksgiving we always celebrate twice. We have a traditional day with family and then we have another Thanksgiving with friends or sometimes just our little family. We just love left overs of our own. We're gluttons like that. So this "Second Thanksgiving," also referred to as "Friendsgiving" was held in the mountains! We had the opportunity to visit a beautiful cabin in Mt. Lemon, our local mountain retreat. Just an hour up the mountain and minus twenty degrees and we are in completely different surroundings.

Some of the mountain seen here with no trees was burned in the Aspen Fire several years ago and still hasn't grown back.

It was chilly up there and Christian was on the tail end of his cold, so he stayed nice and cozy.

He still got out to breath some of that mountain air...and to eat s'mores.

We had such a fun time and we are so grateful to be able to do something like that with the kids.

After being sick, Christian always changes things up on us. It's like his brain gets a chance to rest a little maybe. He has always been fussy when the evening rolls in. I've talked about it many times, in fact, the primary job of his seizure medication is to calm him so he can sleep. He would get fussy, get meds, and fall asleep. Lately, he hasn't been fussing around that time at all! Usually his fussing is my alarm clock to give him his meds, so it's been hard to remember since he is just chillin on the couch. And he's been staying peacefully awake. Hope this keeps up! I like him joining in on our evening activities and not having to worry about if it's too overwhelming or having him asleep the entire time.

In retrospect, I'm so glad we decided to postpone the surgery. Because he would have gotten sick on top of trying to recover and that would have been a nightmare. Now to decide when we want to go through with it.

For now I just want to focus on the Christmas season. We put up a tree tonight and sister very carefully helped.

I'm uncharacteristically ready for this season. We have a tree up, advent calendars open, and our first broken ornament. Ah, Christmas is coming.

Guess what else is coming! A little girl I know turns three soon and we're celebrating next weekend!

Hint: Think pink.

Closer to Fine: An epiphany courtesy of the Indigo Girls.

"Music expresses that which cannot be said and on which it is impossible to be silent."
- Victor Hugo, Hugo's Works: William Shakespeare

I used to think discussing the importance of music and song lyrics was as interesting as discussing the importance of someone else's dream. It's really only fascinating to the person who had the dream.

I also used to think those who professed such love and devotion to music and the part it plays in one's life were bordering on hippie. Artsy, maybe. To which I inwardly replied - Cool story, Bro.

Then the other shoe dropped in my own life, the earth shook under my feet, my life would never be the same. I clung to song lyrics as if it was advice from a paid professional. And one day I looked down and realized two of the tattoos on my body were inspired by...music.

I was one of those people. I am one of those people.

So it was to my surprise that I found myself in tears from an epiphany after listening to a song by the Indigo Girls. Indigo Girls from like the 90's? Yup. Those Indigo Girls.

Strange as it may seem, eleven years ago in college I took a class in philosophy of western religions. There was an eager overachiever giving a presentation analyzing a song by the Indigo Girls. The song was Closer To Fine. Now, I admit, I was only half paying attention. But he lectured and analyzed the song, lyric by lyric.

Fast forward eleven years. A few months ago I had just come home from the Near Drown Tribe Retreat in Seattle. I was feeling pretty high on life, elated, joyous, walking on air, you get the picture. One of the women at the retreat created a CD of songs for all of us. They were great songs, too. Four songs in, I hear the Indigo Girls. A song from eleven years ago in that one college course where I was only half listening. So I decided to listen.

Well darkness has a hunger that's insatiable
And lightness has a call that's hard to hear
I wrap my fear around me like a blanket
I sailed my ship of safety til I sank it, I'm crawling on your shore.

Whoa. I was listening. I was paying attention. The first thought I could muster was my struggle with God and the why's and how's. The words reminded me how easy it was to fall into this dark pit and how I knew people who frequently visited that dark pit, some even lived there.

I felt safe in my anger toward God, and then I sank that ship with all my fury. And there I was. Crawling and begging for answers and with none in sight.

Yes, I'm analyzing. Remember? I'm one of those people.

But then the bubble burst, the flood gates opened, the enlightenment commenced. In a good way.

I went to the doctor, I went to the mountains
I looked to the children, I drank from the fountain
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

[Bubble Burst]

We go to the Bible, we go through the workout
We read up on revival and we stand up for the lookout
There's more than one answer to these questions
Pointing me in a crooked line
The less I seek my source for some definitive
The closer I am to fine

I literally went from pure elation to tears. Like ugly cry tears. Not sad tears. But a moment of clarity. I had been wondering why I felt so happy and even feeling a tad guilty for it. Now, you all might be thinking that perhaps the way I related to the song was by moving away from God. Seeking Him less.

No.

That's not how I see it at all.

The moment I stopped hounding God and Jesus and the Bible and religion for answers is the moment I was set free. Of course, I seek God in all that I do. I find comfort in prayer. My epiphany wasn't about leaving God or not trusting. In fact, it was quite the opposite.

It was about accepting that maybe I would never get answers and being okay with that. I had been figuratively clinging to God, shaking Him by the shirt and demanding WHY?!?!?!

And then I let go. Because there might be more than one answer to these questions. There might be more reasons than I will ever understand. And the moment I started to accept this, the closer I was to fine.

It was all wrapped up in a tidy little package. A lesson in finding happiness and allowing myself to Let it be - also a song reference, tattooed on my right foot.

There you have it. I am a student of the Indigo Girls eleven years later. I'm one of those people who talks about life through song lyrics. And I'm getting closer to fine.

And thank you for the ridiculously amazing CD, Amy!

Amazing YES.

So about that surgery...

...we postponed it. Not begrudgingly.

Our household was sick last weekend. Our household minus Christian. He was just fine, thankfully. But Mom was sick. And when Mom is sick, everything stops. Well, I wish everything stopped, but that doesn't really happen, so I just complete was is absolutely necessary.

Lola was sick, too. And her poor little throat gets mighty croupy any time she gets sick. It's very scary. And it keeps her up all night.

My cold + Lola's croupy cough + Lola's 103 degree temperature + My lack of sleep from waking up every half hour + Lola's rapid heart beat and quick respiration + Did I mention I was sick, too? + We have to check in for surgery at 5:30 in the morning for an 8:30 surgery time = Yeah, right. This is not happening.

So we postponed without feeling the least bit guilty. And we didn't want Christian catching any of our yuckies while having to recover from surgery. Something tells me that would have been semi-nightmarish. No matter. He didn't have surgery and he didn't catch the cold (yet). Win-win.

We are also expecting a augmentative communication evaluation soon. This process has literally taken almost a year to come to fruition and I have no idea why. But here we are, no, not this month. January! It might seem like more waiting, and it is, but I don't mind. January feels new. December is so busy they don't even administer evaluations. Fine by me! We are busy, too, so January it is! We did have a glimmer of hope at the prospect of being seen sooner, like today! But then we got a call that they didn't bring the necessary equipment to accurately assess Christian. Wind exit sail. There might be a slim, teeny chance Christian could possibly be ready to test out an eye gaze talker, so what we will do is a preliminary evaluation with eye gaze talker representatives so we'll have even more information for the big evaluation in January.

There is also a study in San Antonio involving brain scans of children with severe non-birth related damage that some of our friends are doing. The study takes high resolution pictures of the brain and evaluates its potential function in a resting state. The goal is to compare it with a typical child of the same age. This has never been done before and it might provide answers to how much the brain of an injured child functions, giving parents and the medical community better insight in how to help children like Christian. That's the positive outlook anyway. It looked like Christian would be a great candidate, but then we found out that having a VNS implant is a disqualifier. Something to do with the magnetizing power of the MRI. Rats! But I'm still excited that there is even a study paying attention and looking for answers in our kiddos. We'll be rooting from the sidelines on this one.

So we got a few NO's this week. It's discouraging. It calls for the box of brownie mix Lola has been asking us to bake for five days to finally make a chocolaty showing. But I'm thankful for the NO's because without them we wouldn't know how amazing YES feels, right?

Oh, and today when I took Christian to school, I wheeled him into his classroom and a tiny girl in a purple shirt ran up to him and yelled, "Christian!" and threw her arms around him. I guess she is a classmate of Christian's and she loves him. He is her favorite. I noticed she had a Thomas sticker on her hand and I told Christian about it. So she took it off and ripped it in half, giving half of the ripped sticker to Christian.

God, I love compassionate and loving kids and I love the parents who create them. It was an amazing YES.