Exhausted

After the race, the kids were as tired and exhausted as we were. 

But not Wes so much...  

Yawn...  Mommy is....

Do you want to build a snowman?

Yes, I know its summer, well spring... I know this even if mother nature would rather it stay Frozen! We were riding in the car on our way to pick up Jon's bib number on Saturday when our children broke out in song.  The second round was not a good as the first spontaneous round... but you get the idea of the crazy, awesomeness that can be our family.

My kids, like nearly every kid everywhere, are totally obsessed with this movie.  They love Ana and Elsa and the snowman.  Often times I hear them role playing and pretending to be the characters.  I am going to have to find time to watch this movie if I want to know what it is that my children are up to. 

Kids do say the funniest things

I'm in the kitchen trying to tidy up after a long week, and Ava comes out of the bathroom...  "Momma!!!!!  There was corn stuck to my poopy!!! Did you hear me?  Corn!!!!"

I'm sure she wasn't seeing things... we had corn with our dinner last night... 

Westli: "I want to open the umbrella" as he hands me my umbrella. 

Me: "No, we are not going to do that right now Wes."

Westli:  "Come on now Buddy..."

I bought Taylor some new shoes.  His first pair with laces as he learned how to tie them in the last couple weeks.  He was whining that he couldn't get his foot in it, so I showed him how to pull the laces so that they were loose enough to get his foot in.  Then I told him to push this foot on my knee hard so that his foot would drop into the shoe... "Its okay Taylor, you can push hard on my knee." Taylor: "I know, you're a girl!"

More from the Love shoot

Happy Nurses Appreciation Week

Taylor, Alivya, and Sue RN

Is it fitting that I began my nursing career at the beginning of nursing appreciation week?

Taylor and Alivya and Sue RN (2007)

These photos are of Sue, who Taylor and Alivya's primary nurse coordinator while they were in the NICU.  Sue guided us on our first visit as parents.  She taught us how to change their tiny diapers, bath their itty bitty bods, touch them without stressing them, assess them when the machines beeped, and so, so much more.  While I had nursing training already before we met Sue, it was during that time that it all started to click, even if I didn't know it then. Sue played a huge part in why Taylor and Liv are here with us today, and she was a huge player in making me the nurse I am today. 

Westli and Sue RN (2010)

Today I appreciate all of the Sue RNs who cared for all four of my babies.  I thank those that care for tiny miracles today.  Obviously, I appreciate all the different disciplines of nurses, but the NICU nurses really do have a special place in my heart.

Lost

I recently reread the biography called Steve Jobs, written by Walter Isaacson.  I have read this book several times, and I enjoy hearing about the evolution of Apple and the invention of so many of the products that make my daily life so different now than even a few years ago.  The book was published shortly after Steve Jobs passed away, and it ends with an epilogue that describes his last days, the memorial services, and, obviously, the legacy that he left behind.

At one point late in the book, Walter describes what "legacy" Jobs wanted to leave behind, and I got to wondering if that is a goal.  I mean, are we all here to leave something? I have known many who have died, young people, children even, adults, elderly...  what did they leave behind?

Some, have left their children, and in these children, their DNA, sometimes personality traits, ideals and the like.  Some have left pieces of art, objects they loved, and their photos.  Some, have only the memories in my mind.  Are these microscopic bits, large objects, and internal recollections what constitute a legacy?  Does one have to revolutionize business and create multibillion dollar companies, to have left a legacy?

My father battled with congestive heart failure (CHF) for most of my conscious life (I was six when he was diagnosed). In 2004 when I started my journey to become a nurse, I was taught that the life expectancy for patients diagnosed with CHF  was five years.  Since I was six in 1987, I felt pretty darn lucky to have had so much time with Dad. During most of those years, Dad was relatively healthy, and his life was productive and enjoyable. In 1998 he held his first grand baby, Evan.

In 1999 he attended my high school graduation, and in 2003 he came to my 1st college graduation.

That same year he danced with me at my wedding.  Halfway through the song he became very tired, and we left the dance floor so he could rest.  It didn't matter, he was there and we danced.  

In 2005, although wheelchair bound, he attended Jon's college graduation too.  In early 2006, as pictured above and below, he held my first two babies. He was afraid to hold them, especially early on when they had tubes strung everywhere, but I am so grateful that he knew them.  And even though they do not remember knowing him, they did.

His battle ended on this day seven years ago, April 26th, 2007.

I think about Dad all the time.  His legacy lives in me, and my children, and even Evan.  It lives in my memories and my photos, it lives in these annual memorials that remind me how much I lost and that I still grieve deep in my heart.  I miss Dad so much. I regret that he never knew my other children, and that they will never know more of him.  I often think about what he would say to me.  I can picture him tickling Wes and pinching Ava's cheeks.  He would have loved Ava's personality. I actually picture him teasing her... clicking his tongue as he tickles her chin...

Little Bunny Foo Foo

Ava and Wes take the stage after the concert to perform their version of the "ABCs"... hopefully they are safe, and this is not a copyrighted song!

Tonight we attended Taylor and Liv's annual coral concert.  Parents everywhere, since video recorders have been inexpensive enough to own, have been recording their children's concerts.  I'm sure they were played over and over at every family gathering there in for years... then dug out of the deep dark corners of the basement decades later to humiliate adults everywhere... but we live in different times.  Obviously.

With our family literally scattered from one coast to another, I love the idea that I can post a video here on my blog and share these moments, right now (while its still cute and not so much humiliating) with the people who can't be here to attend a 30 min concert in our child's hot cramped gym.  Might even be preferable if you ask me.  But, last night, we were told in print, and verbally reminded, that we are not allowed to share on "Any social media" the videos we were taking of the concert.  This rule, they argued, was due to concerns about the "safety of the children" and the fact that the music is "copyrighted".

I'll tackle the copyright first.  As an avid blogger, I post a lot of videos.  I use YouTube to host these videos, and YouTube is very rigorous about hosting copyrighted material...  If you have followed this blog for awhile, you know that I have posted dozens of videos of my children singing and dancing to popular - ehem, copyrighted- songs.  Most of which were playing on some sort of copyrighted device, Pandora, Wii, Movies... you name it.  Still, YouTube's copyright filters caught them, checked them out, and eventually (usually only minutes later) published them.  Why? Because children dancing and singing to the music, and publishing it on YouTube, only promotes the song.  Its a free statement of "look this song is so awesome even these adorable kids love to sing and dance to it!" And lets be real, what artist is going to be threatened by a bunch of 1st and 2nd graders butchering their music?  Its not at all like our kids are huge music prodigies putting on a really amazing production.  These kids are fidgeting, twisting their shirts and dresses in nervous discourse, belting out the lines, croaking and mumbling their way through the dreaded annual concert that they in no way asked to be a part of.  So, with that, I completely reject this copyright material argument for why I cannot share my completely amateur video of my child and their classmates 2nd grade coral performance on my blog, or Facebook, or whatever outlet I choose...

On to the safety excuse.  Social media is such a part of life right now.  Most of the children I know, are already in someway a part of social media.  Even the least technically savvy people that I know, have a Facebook account, and most of them have a photo or two somewhere associated with their account.  As for my children, I have posted their photos since they were tiny little babies in the NICU.  I do this not to subject them to creepy predators who might be scouring the internet, but because, as I have already said, we have family and friends all over this country (well world... shout out to my international readers! Bonjour la famile de Yollande, Bienvenue!)

Anyway, my point here is that social media, like it or not, is a part of life now.  It is as ingrained in our culture as the telephone in our parents generation.  Sure, posting these pictures and videos makes it available for people to download and use in what could be unethical means.  I don't condone that, but I accept that even with all the privacy settings I have chosen to protect my content, that this may still happen.

I don't see how it is any different than the newspaper posting a picture of kids playing at a public pool, or a sporting event, or a coral concert.  The photos/videos are not naming kids specifically, they are not sexually explicit, they are not advertising a school...  and because of the file size, they are usually just snip its of video...  Again, how is this different from the local news crew filming in front of any event?

I tried to gain some insight here, and searched for news events about elementary school concerts and social media. All the hits were about Billy Joel showing up for an elementary school concert.  Nothing about safety concerns related to parent videos and social media.

I love that our schools are beginning to teach our students proper social media etiquette.  I think more teachers need to embrace this and include it in their lesson plans.  I think the school got this one wrong, its not that we, as parents, should hide our proud home videos from the scaly throngs of social media... no... we should embrace it.  I refuse to live in fear that "something bad might happen".  Every morning I get up and get into my vehicle knowing that something bad "might" happen, but I still do it and so do you.  Therefore, I reject the notion that posting a video or photo of my child and their classmates during their school coral concert is inherently dangerous.

Going on an Egg Hunt

This Easter Egg Hunt was put on by the Easter Seals especially for kids with disabilities... more specifically, Autism.  We saw kids of all different abilities, and all of them were having a great time.  There was a boy, who appeared to have Downs, who was helping out the volunteers.  It was a great reminder to me that even people with differing abilities have the understanding of volunteerism. 

This Easter Bunny was awesome!  We decided that it was a female bunny, and she was so into it.  I don't remember the last time I saw a poor person stuck in a character suit who was so believable.  At first Ava was very weary of her, but she warmed up real soon!  

The hunt had to be held indoors as the monsoon moved in outside.  The children were each allowed to "find" 10 plastic eggs.  Then they traded in their eggs for a goodie bag full of fun.  There were also a ton of activities to keep them busy while they waited for their turn to hunt.  The kids colored easter themed pictures, guessed how many jelly beans, did a photo hunt, dug for eggs in a two different sensory buckets, and frosted (ehem, ate) egg shaped cut out cookies.  If that wasn't enough, they also had some other sweet treats including cupcakes, jello jigglers, rice crispy treats, hard boiled eggs, jelly beans and more.  

So even though the event was rained in, it was still a lot of fun.  Its always nice to have a place to take the kids where they don't get the stares from people who simply can't understand. 

Simpler Times

It didn't feel that much simpler, but it was... love these babies!!!

Autism: the cause

I was thinking about what I should blog about when I came across this article: Could Dad's Obesity Cause Autism.  Its the latest I have seen in a slew of headlines claiming to point to, at least, a cause of Autism.  Everything from Dad's obesity to childhood vaccines, to wheat gluten have been blamed commonly for the development of autism.  The CDC recently released new incidence rates for people diagnosed with Autism, claiming that the rate has increased something like 25% in the last year or two.  It is not that this increase is so alarming to me, nor is it that the number is now 1 in 63, its that there are so many people out there living with the challenges that Autism brings who likely don't have access to therapy that can help.  Therapy does not cure these autistic behaviors, but rather teaches individuals skills to take control of some of their tendencies.  Thereby Autistic people find a place in society and live more comfortably within its boundaries.

For me, the diagnosis of our sons' autism, was directly linked to access to these therapies.  Regardless of what we called their collections of symptoms, each unique with some similarities, I needed them to have the ability to function at their best, what ever that meant for each of them.  Without an official diagnosis, there was no access to ABA therapy that literally opened up Wes like a zipper.  For more than four years I wondered what thoughts he might be having, if he was having any.  So now, just a year into therapy, I can sit down with him and converse, is simply amazing.

I don't know if Jon's obesity had anything at all to do with the development of autism in Taylor and Wes, I suspect not.. I doubt that the vaccinations that we have them to protect them from illnesses that would have easily killed our tiny fragile premature babies had much to do with it either... I suspect that there is some genetic link, some combination of Jon's DNA and mine that manifested our own autistic tendencies more significantly in Taylor and Wes.  I also suspect that their prematurity had something to do with it as well, or at least it didn't help.  I don't think that we are going to find a smoking gun, this is the cause of autism that will lead to cures or even prevention for these people.  Sure, if I could rid my children of the burdens of autism, I would in a second, but I think we should focus on securing therapeutic access for anyone with social inhibitions or autistic tendencies.  I think we, as a society, need to understand the differences that make humans uniquely humans, and strive for understanding and tolerance.  Instead of directing your children not to play with mine, or ignore them, instruct them in how to play with them, how to model the desirable behaviors, and kindly correct the less desirable ones.  Teach them humility.

Go Blue

I read a tweet today that said something to the effect of, "my child doesn't need blue lights, he needs help!" Mine too, two actually, but going blue is a beginning. Going blue isn't about our everyday woes, the tantrums, the meltdowns, the frustration, or any other specific piece of the puzzle.  Going blue is about the whole picture, its about looking at these individuals as people just like you and me.  Its about branding the image of autism as people, children, who have ideas and intelligence that they cannot express to the world. It is about the things that people don't see in our autistic children because no one is looking when their smile is lighting up the room, or this giggle is so contagious that everyone is giggling... the world sees only the meltdowns, tantrums, ticks, bruises... the bad.

There is so much more.

On Monday we drove 4 hours round trip for Wes to see his developmental physician, during the long ride home, Wes turned on his playlist on his iPad.  Until that morning, the playlist had only four songs: What the Fox Say, Roar, Wrecking Ball, and Another One Bites the Dust...  That morning I added a few more, I guess I thought we might be forced to listen to this list for a long time, and we were.  For more than an hour, Wes played these songs. What I didn't anticipate, however, was that he would skip the tracks when it played songs he didn't really want to hear.  The consequence was more than an hour of "I'm Sexy and I Know It" by LMAFO blaring in poor Jon's ear from Madison to Fond du Lac!

This afternoon his therapist told me that while he was on the potty, she observed him singing "I'm sexy and I noticed!" over and over. I am sure I blushed, but we all had a giggle as we pictured it!

Wes has been working on a target at school where they are teaching him the appropriate responses to everyday situations.  So the therapist is supposed to compliment him, and he is supposed to say "thank you" then the therapist says "your welcome". So Wes walks up to me (every day) and says "I like your shirt Mom!" and I say, "thank you" and he says "your welcome". Then he turns to the next closest person and tells them, "I like your shirt!" and waits for the response expectantly.  On Saturday we had our insurance agent at the house, so Wes walks up to him and says, you guessed it, "I like your shirt!" The agent looks at me like "um what am I supposed to do?" Maybe we all need some autism therapy?

Last night Ava and Alivya got to spend an evening with my Mom. I knew Taylor would be jealous, but for a lot of reasons including the fact that sometimes they each need a little special time, he could not go.  So this morning as we are getting ready to head to Connections I can tell that Taylor is Blue, as in depressed or down. So I asked him what was wrong. It took more than twenty minutes, at least three "neverminds", twenty "ums", lots of lip smacking and averting eye contact before he finally spit out "I miss Alivya!"

The therapist that worked with Taylor on Friday told me that Taylor made the best "alarm" clock during craft time.  She said everyone was there trying to make alarm clocks like Tay's. I have seen his imaginative creations, I believe it!

A few reminders:

Henry Vilas Zoo

We started making trips to Madison for medical needs in June of 2006 when a pediatric surgeon placed Taylor's first G-tube.  Since then we make the trek at least twice a year, some years many more trips than others.  I have been hearing about the wonderful attractions the greater Madison area has to visitors ever since, but we have never had the occasion to enjoy any of it, until today. Early on when we went to Madison, we had little sick babies, and later when the first had grown some, we went on and had a couple more... little sick babies that is :) Recently when we have come, it has been just one or the other parent and as many as all four kids.  Usually its just one or two though, which means that we have to get home to rescue the other parent or allow the other to go to work.  It is sort of ironic that we have both made the trip twice this year already and it is only April... hmm...

Jon scheduled this appointment intentionally during Spring break as we try not to take the kids out of school too often.  He also deliberately chose a day when I was off, so that we could both make the trip.  Since the developmental pediatrician that Wes sees tends to schedule her visits for later in the day, it seemed perfect to make a day of it. 

The Henry Vilas Zoo in Madison is close to the campus (and therefore close to the developmental clinic), and free.  It seemed to be the place to be on Monday as the three small parking lots were all full when we got there at about 11 am.  We found off road parking nearby pretty easily though. The kids loved that they had several of these painted boards for them to put their faces in and pretend to be everything from Orangutans to Astronauts! I never did figure out where to redeem the gift that this one boasts, but the kids really didn't seem to care.  I didn't know what sort of animals to expect, given that this zoo doesn't charge admission, but I was pleasantly surprised at the variety.  The zoo was the perfect size too.  It was not so big that the kids were bored or to tired to keep going.  We saw nearly everything in the hour and a half that we had to peruse. I don't know if was the weather, which was finally more typical of this season in Wisconsin (upper 50s, low 60s), or if it was the time of day, but most of the animals were out and active!  This was the first zoo experience I have had that I remember really enjoying the animals.  The tiger was up and pacing around and around his enclosure.  It was pretty spectacular and one of my favorite parts of the day.  There was a rather impressive sting ray that was very active as well and ranks high on my favorite chart.  We saw a bunch of turtles and fish, and two camels that were resting and staring right at us (the crowd). The otters and seals were swimming around very actively as well.  The kids probably enjoyed the three story playground built to resemble a tree house the most. I think, in future visits, the zoo will probably be a common destination!

Long run

I ran 8 miles today.  Its been my longest run so far, but not my longest time!  I know my pace has been improving, but it feels good to sort of "see" it like this.  I also know that my time would have been better if not for continued impasses around the neighborhood due to ice and melting snow drifts and my new shoes.  I was super excited to go to the running store for new shoes yesterday, and I knew that an 8 mile run probably wasn't the best way to break in new shoes, but that is what was up on my training calendar. So I expected a little bit of both to slow me down a bit. My other issue is hydration.  I know that when I run on race days, they have water stations around, but what I don't have figured out is what to do when I am on my training runs. 

My body itself, with the exception of my right foot which went numb after the first mile (shoe related), felt really good.  So I will take that for what it is worth!

End of term feast!

On Wednesday, we finished the last chapter of the fifth book of the Harry Potter series, The Order of the Phoenix.  As has become our tradition, as a family we celebrated this ending with an end of term feast using Harry Potter inspired recipes, this time, from Alivya's Unofficial Harry Potter Cookbook. 

We also spent the week creating our very own edition of the wizarding magazine The Quibbler.  Read it here. 

Alivya (with the help of the other kids), Jon and I wrote the articles.  The magazine features photos from all of our other Harry Potter adventures.  Every time we finish a book, it is another challenge to try to come up with unique and fun activities inspired by the book.  This idea was suggested by Alivya.  I couldn't be more proud.  I love that they get excited about reading the books, they are thinking about what we can do to celebrate, and they get excited about the feast.  And, at least this time, they all tried the new foods.  So overall, I really think that it is completely worth all the fuss and work we put into these "feasts".

On the Menu:

Shepherds Pie

Brussel Sprouts

Hot Rolls

Rhubarb Crumble

Honeydukes (Peep) Popcorn

Hot rolls are rising!

After the feast, we sat down with our sweet colored popcorn and, per tradition, watched the movie.  I love the anticipation that the kids get towards the parts of the books they enjoyed.  I love how they start to understand things from the book that they didn't quite get from the reading... like Grimmauld place.  I also enjoyed, very much, Westli falling asleep on me half way through.  I know that those moments are limited, so as much as I wanted to move... and as hot has he made me, I tried to love it up.

After waiting a really... really... really long time for dinner!

"But Dad, I don't know how to read!?"