Light It Up Blue

Forgot to tell you something!

April is Autism Awareness Month.  The goal is simply to bring attention to the fact that 1 in every 110 children is diagnosed with an autism spectrum disorder.

Saturday, April 2 is World Autism Day and places all around the world will "Light It Up Blue" to raise awareness of autism.

What can you do to show your support for the autism community?

You can do like the Rush Family and change your outdoor porch lights to blue bulbs.

It's fun, it's simple, and when your neighbors ask why you have blue lights, you can tell them you're Lighting It Up Blue for Lily!  Or for anyone else you know who has been touched by autism.

Let your blue lights shine the entire month of April.  You never know who might drive by your house, see your blue lights, and take comfort in your small show of support.

Put Up Your Dukes

Before I begin the actual post, do I need to explain what "dukes" are?

Just in case someone is thoroughly confused, dukes are your fists.

Feel free to leave a comment thanking me for expanding your vocabulary this morning.

I am in a battle with our health insurance company.  (thus the reference to "dukes")

It seems like I am always in a battle one way or the other with a health insurance company.

When Ryley was diagnosed with diabetes 12 years ago, I discovered the ugly side of health insurance.

Oh sure, they're so pleasant to work with as long as you are incredibly healthy and only see the doctor once or twice a year, say for well checks or school physicals.  And maybe they'll still be nice if you get sick once or twice a year, but only if it isn't anything serious or chronic.

But once they discover that you might be expensive to insure, things become a little tense.

We had one health insurance company actually assign three deductibles just to Ryley - one for prescriptions, one for durable medical equipment, and yet another for doctor visits.

This sounds so nice and easy to keep things filed but it also ensures that we would never meet a deductible, therefore they would never have to cover 100% of anything.

And here's what really gets me going.

Health insurance companies often have employees who know nothing about health making medical decisions for my family.

A prime example of this:

Our health insurance provider actually called Ryley's endocrinologist to clarify coverage.  In the course of the conversation with the doctor, the employee (knowing that Ryley has Type 1 Diabetes because it's written on every form I filled out for them) actually asked, "So how long will Ryley have diabetes and need to continue seeing you?"

Umm.... excuse me?

Type 1 Diabetes = Lifetime.

As in, no cure.

So it's in the hands of this employee to decide how many times a year Ryley should see the endocrinologist and how many times a day she should check her blood sugar because they only want to cover the exact amount of test strips she'll need - no more and no less.  Because if we got extra strips, we might begin a highly lucrative black market business.

Please.

What really can make me crazy about this is that study after study shows that diabetics who get good medical care and see a doctor regularly have far less complications in the future.  Therefore, they cost the insurance companies less money than if they lose their vision or develop neuropathy when they're older, to name a few possibilities.  So sending a few extra test strips ought to be a good thing and a person shouldn't be treated like a criminal for making that request.

My current battle involves Lily's care.

Like diabetes, therapy for autism is an ongoing process.  But again, studies show that early intervention makes an enormous difference in the lives of these children, some even losing their diagnosis and progressing along like a typical child.  Therefore, spending a little more money now to save lots of money in the future should be considered a good thing.

But it just doesn't work that way.

You know, I used to be the kind of person who was intimidated by medical specialists, hesitant to speak up or disagree with the "experts".

Not anymore.  I take my role as advocate very seriously.  No one on earth is going to fight like me for my children.

So for now, I'm lacing up my boxing gloves and stepping into the ring to get Lily what she needs.

It's go time.

It's That Time Again!

You know what I'm talking about.

The time when you start to hear the sound of mowers and blowers and ..... can't think of another yard work rhyme.

The time of year for some spring cleaning.

Now, some people take this idea a little too seriously for my taste.

Check out this Spring Cleaning Checklist I found at Martha Stewart's website.

Seriously?  I agree that it's a great idea, but that list is not going to get done around my house.

In my book, Martha is the Queen of Overkill.  I mean, the woman never opens a canned food item if it's something she herself can plant, grow, harvest, and cook.  I believe Martha's motto must be, "Why take the easy way?  I'd rather take a simple task and make it one thousand times more complicated than it really needs to be."

I don't live in Martha's world.

If I'm resealing grout and washing window screens, it's only because we're getting ready to sell the house.

I like to take my cleaning tips from someone a little more practical.

Someone like Erma Bombeck.  Here are a few of her thoughts on cleaning house:

"Housework.  If you do it right, it will kill you."

"No one ever died from sleeping in an unmade bed.  I know some mothers who remake the bed after their children do it because there is a wrinkle in the spread or the blanket is on crooked.  This is sick."

"There's something wrong with a mother who washes out a measuring cup with soap and water after she's only measured water in it."

That Erma is my kind of woman.

Sometimes the bed's just not going to get made.

And while I like a clean house, I'm not going to kill myself and make everyone else miserable in the process just to have a spotless home.  If things are put away and you can walk barefoot in the kitchen without crushing things under your feet, it's all good.

I much prefer this Spring Cleaning checklist:  31 Days to a Less Messy Nest.

Actually, it's not really a Spring Cleaning checklist.

It's just 31 ideas for sprucing up your home and making your life a little more organized and therefore simpler.

And let's just make a pact right now, ok?

We're not going to get all stressed out about having to do this list in 31 days simply because the title is called 31 Days.

The title is not the boss of us.

You might choose to do one thing a week.  You might choose to only do a couple of things from the list.  Some of you might choose to do Martha Stewart's list to which I say, more power to you!  Or you might even choose to not do anything on any list at all.

That is 100% A-OK.

My idea of spring cleaning is just doing a few extra things around the house that make life a little bit easier for all of us who live here.

For example, I love the Lunch Basket idea (Day 5) on the 31 Days list and I'll be incorporating that this weekend.

And the Messy Organization idea (Day 17) is very reassuring to me.  I'm never going to take the time to neatly wrap each and every extension cord, power strip, and various charger cords after I use them.  But I can put them all in one drawer or container so that at least I can find one when I need it.  It may not look that great but it works and that's the point.

Here's a nice thought to keep in mind as you go about doing any spring cleaning:

"We labor to make a house a home, then every time we're expecting visitors, we rush to turn it back into a house."    Robert Brault

I like that.

Dialogue with God

Last weekend, our church hosted its' annual Ladies Retreat.

It was actually a pretty amazing anniversary as well.  Every single year for the past 25 years, our church has hosted a ladies retreat.  That's quite an accomplishment, in my humble opinion.

Our special guest speaker this year was Susie Davis.  You might be familiar with some of the books she's written, but she's a bit of a local celebrity around these parts.  (click on her name to check out her lovely website)

Susie shared how she does her quiet times - something she calls a two pen dialogue.  I thought it was such a great, visual way of hearing from God.

Here's how she describes it:

For years, I have been having a 2 pen dialogue with God.

Goes something like this. I sit down in the morning – coffee poured – and open my journal.

Then I mark the date on the page and write down my prayers with a plain, blue pen. After that, I read the bible and when something jumps out at me … I grab a colored felt tip marker and write down God’s words in orange or green or violet, etc.

I really like this idea.

There have been lots of times while reading a passage of Scripture, that a particular verse just seems to jump out at me.  I love thinking that maybe, just maybe, God is speaking directly to me, asking me to pay attention and listen to Him.

Then writing down that Scripture and maybe a few words about why I think it seems especially meaningful will help me absorb the conversation even better.

On days that I feel alone or discouraged, all I need to do is pull out that journal and flip through it, seeing all the colorful words of God speaking right to me. What better evidence of God's unfailing love for me, no matter how I feel.

Susie also mentioned that she uses a One Year Bible in the New Living Translation for this two pen dialogue.  She simply opens to the current date, reads a section from both the Old and New Testaments, along with a Psalm and Proverb.

Quick and simple, yet profound.  Not to mention that by the end of the year, you'll have read the entire Bible.

I'm going to give this two pen dialogue a try for a while.

I'm pretty good at talking to (and sometimes at) God.

Not so with the listening part.

My goal will be to see much more colorful writing (God's words) than plain, blue writing (my words).

Got any quiet time ideas?  Leave a comment and pass 'em on!

Saddle Up Your Horses

The Rush Family is about to embark on a couple new "adventures" with Lily Bird.

It's always difficult to decide when to try something new or different.

There are probably quite a few people out there who think parents of special needs children are so desperate to "heal" their kids, that they'll try almost anything.

Parents travel the world seeking specialized medical treatment, attend healing services, feed their children unusual herbs and supplements, not to mention follow restrictive diets, and try treatments most people have never even heard of like hyperbaric oxygen chambers and chelation.

Anytime something new comes along, many of us jump on the wagon, hoping and praying this will be the answer we've been searching for.

When I come across a treatment that is new to me, I feel a responsibility to thoroughly research it, talk with other parents and medical professionals, and then make an educated decision as to what I'm going to do with this new information.  Do the pros outweigh the cons?  Is it going to hurt Lily in any way if we were to move forward?  Am I going to give it a try?

And despite the feeling that I might simply be grasping at straws, if it doesn't harm Lily in any way, I usually decide to give it a go.

I do this for a couple of reasons:

1 - I don't want to hear ten years down that road that such and such treatment would have "cured" my daughter and I was just too scared or lazy to look into it.

2 - I seek the best treatment for medical conditions all the time.  Why would I treat autism differently?

For example, when our oldest, Ryley, was diagnosed with Type 1 Diabetes at the age of 5, the first thing I did was seek out the absolute best diabetes clinics in the United States.  We were living in Virginia at the time and the best clinic happened to be in Boston - the Joslin Clinic.  We loaded up the family, including both sets of grandparents and headed to Boston.  We traveled there a total of three times, until we felt we had a good handle on how to treat Ryley's condition.

When it was time to choose a local endocrinologist for her, I again looked for the best a little closer to home.  I found Dr. Parker in Charlotte, North Carolina.  We would load up in the morning, drive 3 hours to Charlotte, see the doctor, then load back up for the 3 hour drive home.

People thought I was nuts, especially when there were plenty of doctors who could treat Ryley right in our own town.  But I didn't want to settle for the closest one.  I wanted the best.

Another example.

When Lily needed open heart surgery at the age of 4 months, we headed straight to Texas Children's Hospital in Houston.  I wanted a pediatric heart surgeon who looked at surgery on the tiny strawberry sized heart of a newborn as just another day at the office.  I wanted an expert - someone who did the exact procedure Lily needed day in and day out.  We found Dr. Fraser.  He was cool, calm, collected and he saved my baby girl's life.

I could go on and on about trips we have taken just to seek advice from the best doctors in a particular field of medicine.

In my mind, autism is the same.  There are experts in this field of study, too.  And I want them to see my daughter.  I want to pick their brains.  I'm never going to know if something works if I don't give it a try.

It's a risk.

I put my heart on the line each time I try something new with Lily.  Hope soars if I see a little bit of improvement.  Hope crashes if nothing at all changes or God forbid, she gets worse.  I can grow cynical quickly.  I lower my expectation for positive change in order to protect my heart.

I know that 1 Corinthians 13:13 says, "And now these three remain: faith, hope and love.  But the greatest of these is love."

I'm here to tell you that hope runs a very close second for me.

It's a gamble.

But one I'm willing to take.

A potential heartbreak for me is a selfish reason to not explore new options for treatment and give them a try.

After all, this is my kid I'm talking about.

And she's worth it.

I'm a Guest Blogger!

Check out this great blog - www.rageagainsttheminivan.com written by Kristen Howerton.

Kristen does this neat thing for guest bloggers called What I Want You to Know.  Here's how she describes it:


What I Want You to Know is a series of reader submissions.  It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face.

I was pleasantly surprised to receive an email from Kristen letting me know that one of my posts (Where's the Love?) is on her blog today.

Give it a look and explore around her blog a bit - I think you'll like it.

Enjoy your weekend!

Lanyard Tutorial

Since Lily is now using an iPod Touch as a communication tool, I've been trying to come up with a way to attach a lanyard to it.  This will hopefully make it easier to use and not lose.

The problem I keep running into is that I have the Touch in an Otterbox Defender series case which doesn't have a place where I can easily attach a lanyard.

So of course, I went online to do a little research.

Grace App for Autism has a nifty little lanyard tutorial (for the Touch in an Otterbox case) that I thought I'd share with you.

A lanyard would actually be great for any kids, special needs or not.  I didn't really think about that until yesterday.

I ran into my aunt, my cousin, and her two kiddos at the mall.

Her oldest boy was sitting in the stroller, playing with an iPod.  My cousin mentioned how nice it would be to have a lanyard so that she didn't have to worry about him dropping it, setting it down somewhere, or just having to keep digging in her purse to find it.

Just the convenience factor alone should make the website helpful for a mom of any tech-savvy kid.

The only issue I've run into is that little black thread thing you see in the how-to photos.

My lanyard didn't have that so I tried to rig up something similar using the wrist strap from a camera.  It actually worked for two weeks but when I picked Lily up from school yesterday, the lanyard was off.

So I'll be experimenting this weekend.

Or searching for a lanyard with those black thread things on them.

Any ideas for me?  Would love and appreciate some help here!

This is Not a Good Activity

Lily has discovered a new pastime.

Toilet flushing.

Actually, chronic toilet flushing is old hat for her.

It's not uncommon for me to be in the kitchen and hear a toilet randomly flush.  She'll just be walking by a bathroom and decide that the potty needs a good flushing and she's just the girl for the job.

No, the new pastime is toilet flushing with objects.

She"ll be sitting in the living room, innocently playing with a toy.  Then all of sudden, she'll jump up with toy in hand and take off for the bathroom.

That's my cue to follow her at a rapid pace.

Sure enough, I'll round the corner and she'll be standing by the potty, toy poised over the bowl, ready to be dunked and flushed.

Most of the time, I'm quick enough to catch the object before it takes the plunge.

But I did miss one a couple days ago.

Truthfully, I never even saw it happen.

I went into my closet to put away some clean laundry, passed by the toilet and noticed something a little odd.

A Bible was in the bowl.

That's right.

My daughter attempted to flush the Word of God down the toilet.

I'm not exactly sure what that says about her spiritual life.

Thankfully, it was just a small New Testament that no one uses for study purposes.

But I was equally thankful that it was large enough to not flush and do some serious damage to our pipes.

Up next on the household chores list?

Install a lock on the outside of bathroom door.

And make friends with a plumber.

The Virginia Hillbillies

So yesterday I was sitting in my car because I was actually early for an appointment - imagine that.

My cell phone chimes to let me know I have a text message.

It's from my little brother and this is what it says:

"Just wanted you to know that you got me and the boys hooked on Swamp People.  We like Troy the best, but Aiden wants to be Bruce for Halloween."

So let me give you a little background here, at the risk of revealing that I might not be as refined and elegant as many of you think I am.  There has to be at least a couple of you who think that....

First, here are my precious nephews - who are getting much too old for me to refer to as "precious" anymore.

This is Aiden, the middle boy:

And this is Austin, the oldest boy:

Precious, right?

Even though both of these boys got the Texas Redneck gene from their father and truly belong in this great state, they're living in Virginia at the moment.

Back in November, they came to Texas so we could celebrate Thanksgiving together.

A couple weeks before their arrival, Ryan and I stumbled across a show on the History Channel called Swamp People.  

Really, with a title like that, how could we not stop and check it out?

So we did.

Turns out the show is all about multi-generational families who live and work in the deep Louisiana swamplands, mostly by catching alligators.

I'm not sure that anyone is even still reading at this point but for those interested few, I'll keep going.

Here's Troy telling about his heritage and family.

It took me watching all of about three minutes before I told Ryan that the boys would love this show.

One evening while they were at our house, we introduced them to Swamp People.

And love it they did.

Evidently, I am now responsible for them not missing an episode.

Lest you think I am making fun of these Cajuns, let me give you a little taste of my family. 

Here's the second text my little brother sent yesterday:

"Aiden actually called me and said they caught a skunk in their trap at home and want to do Rock, Paper, Scissors to see who gets to shoot it."

I feel certain that my multi-generational family would more than qualify for a pretty interesting reality show.

But, I admit I was reassured when this text followed:

"Don't worry.  We're not eating it.  There are limits to our redneck-ness!"

Well that's a relief.

And really should go without saying, one would think.

To top it all off, I get an email from my brother that says, "There are even shirts!"

Christmas shopping for my brother and the boys - DONE.

Just Like UNusual

I like to think that I'm a fairly flexible person.

I can roll with the punches.

I can fly by the seat of my pants.

I mean, I'd prefer to have a set plan in place that I can follow to the letter but if that's not an option, I like to think that I'm not so set in my ways that I can't adapt.

But sometimes, life gets in the way of my plans.

For example, this morning.

I dropped Lily Bird off at school, like usual.

Jamie, the sweet site manager came out to visit with me for a few minutes, like usual.

See how things are progressing along nicely, just like usual.  Isn't that pleasant?

When BAM!

She told me something that wasn't like usual.

Something I didn't want to hear.

Jamie had the audacity to inform me that she is leaving our precious little school.  She herself will be going back to college to work on her masters.

While I am truly happy that she has this opportunity, it is so difficult to accept change sometimes.

Especially when you have a special needs child, I think.

Once I've made a decision about Lily's therapy or whatnot, I find myself getting in a comfortable rhythm. I grow close to her therapists and teachers.  Things just chug along quite smoothly.  The plan of action I designed is working out and we wake up each day knowing what to expect.  I relax just a little bit.

Then something changes and I find myself getting uptight all over again.

In reality, the daily routine will not change for any of us.

Lily will continue on, like usual.

The school will hire a new site manager who will take on Jamie's responsibilities, like usual.

I'll remind myself that letting go of the familiar is a good thing.  Change can shake things up a bit and get me out of a rut.

But I like Jamie.  I'll miss her.  And I'll miss seeing her love on my baby girl.

Change.

It will make me crazy or make me stretch.

It's up to me.

The Safety Dance

I always thought I knew how to childproof a home.

Install a few cabinet locks, knot up the mini-blind cords, and set up a couple gates.

Done.

Then Lily Bird came along.

And my perspective on childproofing completely changed.

I saw a need for high-level security soon after that baby girl took her first steps.

And relocating here:



wasn't an option for us, though an around the clock security staff would be handy sometimes!

Hiring someone from Alcatraz to childproof my home also seemed a little extreme so I had to take matters into my own hands.

At first, I tried various typical safety items that you find at Babies R Us and Target.

My little MacGyver dismantled these in less time than it took me to install them.

I then purchased more expensive and intricate devices that required more than one step to work.  These would buy us a little time but within two months, she had those figured out as well.

And if she was stumped by a particularly tricky contraption, brute strength was then applied.  Baby gates would come crashing down, unable to withstand the pressure.

It was time to bring out the big guns.

It was time for.... Lily-proofing.

This required some way outside the box thinking.

We enlisted the help of handymen much more skilled than ourselves who did some light remodeling of certain rooms in our home.

They built some original things straight from my terrible sketches.

My mom and I designed a one-of-a-kind special safety bed for Lily.  We had someone build it and then some friends come paint and decorate it.

My parents and I just recently installed a wrought iron gate on the side of our house to keep Lily away from the AC units and yard work tools.

My next project?  Hire someone to install a dutch door like this:

in place of Lily's bedroom door.  Of course, then I have to make sure she has nothing in her room that enables her to climb over the door like the children in this photo.

I'd also love to put an old-fashioned screen door on my back door so that Lily can freely go inside the house and outside to the backyard this summer without all the bugs doing the same.

As you can tell, Lily-proofing is an ongoing process.  As she grows and gets older, things that used to work don't anymore.

Trying to stay one step ahead of that girl is a full-time job.

But you know how the experts like Dr. Oz tell us that we need to do things like sudoku or crossword puzzles to keep our brains sharp as we age?

I figure trying to creatively outsmart a 4 year old must count for something.

So why don't I feel any smarter???

Besame Mucho

For all you non-Spanish speakers, that means, "Kiss me... a lot!"

And Lily is happy to oblige.

In fact, you don't even have to ask for kisses.

More than likely, you're just going to get some whether you want them or not.

Thankfully, Lily has learned that nice little kisses among friends does not require placing her tongue on your lips or licking you.

She has finally perfected the art of the dry, closed mouth kiss - complete with a little "popping" sound when the lips meet.

No one is safe from our little kissing bandit.

Thanks to the advice of a sweet friend, I had a wonderful lady come to my house last week to cut Lily's hair.

Speaking of which, there will be a whole post about this lovely experience but I'm waiting for Ryley to take some pictures!

Anyway, while Natasha was working her magic, Lily was watching TV and having a snack.  But about twelve times during the course of the cut, she would pull Natasha down for a quick kiss.  She was an absolute great sport about it - even when Lily had a nice ring of white around her mouth from eating yogurt pretzels.

One of the moms at Lily's school told me that she was hanging out there last week and Lily crawled up in her lap and gave her quite a few smooches.

The therapists get lots of kisses, too.  Hopefully, that balances out the many pinches they also receive.

Hall and Oates had it right when they sang, "your kiss is on my list of the best things in life."

Out of all of Lily's behaviors, I hope this one stays around.

Forever.

Finding a Balance

Spring Break and other holidays magnify a common issue in the Rush home:  family outings.

Before Lily Bird came along, family outings included every member of the family doing something fun together - stuff like going to the movies, hiking at Pedernales Falls, climbing the big rock at Zilker Park, or visiting the Bob Bullock Texas History Museum.

Once Lily arrived, we knew some things would need to change.  But once we got past all her health issues that first year, we really thought that she would be right there with us on our family adventures.

But the honest truth is that many times, she's not.

It took me a while to get past the idea that having a fun family day without Lily was ok.  I mean, family day should be for everyone in the family.

But after many, many attempts to include her, I finally came to the conclusion that no one was having any fun.  Not Lily.  Not the big girls.  And certainly not Ryan and I.  It was completely stressful for all of us. There were many times our family outings ended abruptly simply because we had all reached the end of our rope.

I realized it wasn't fair to plan something, get the big girls all excited, then head out on the big day only to be back home in an hour simply because Lily had a melt-down.

At first, I adjusted plans to accommodate Lily's schedule and only went to places I thought she would enjoy.

Places like those warehouses that are filled with all kinds of enormous inflatables - slides, bounce houses, ball pits...  Rather than playing, Lily would run around, sitting in each and every adirondack chair that had been placed around the building.

Or we'd go to one of those wonderful playgrounds with lots of great climbing equipment and Lily would sit in one spot, digging in the pebbles.

Now, I'm all for letting kids play creatively and I really didn't have a problem with Lily wanting to sit in chairs or dig in gravel.

But I knew continuing to allow Lily and her needs to determine our family outings was not fair to our big girls, especially when Lily didn't really care about the inflatables or playground equipment.  I mean, she can sit on adirondack chairs and dig in pea gravel at home!

Ryley and Reagan were troopers and never really complained about all the constant plan making and plan changing.

But it simply wasn't working.  I needed to find a balance between all-family outings and big girl only outings.

Utilizing school breaks became the solution.

Lily's school goes year-round and her breaks are not as frequent as a traditional school.  For example, she doesn't have a spring break.

When Ryley and Reagan are out of school, we try to plan some things that we can do with just them. We drop the Bird off at school, then head out to kayak on Town Lake, or wander the mall, or see an I-Max movie.  We stay out until time to pick Lily up, then we all head home and hang out together.

When all the girls are out of school, mostly we just hang out around the house together.  But we will try to do a couple of "Lily-approved" outings, like going to Morgan's Wonderland in San Antonio (which the big girls love as much as Lily does!) or running around the big open field at Zilker, or bike riding.

Everyone is much happier this way.

The big girls get to hang out with mom and dad and do some fun stuff, just us.

We all do some Lily-designed outings.

I no longer feel guilty because all of us are getting some good family time.

Our family time may not look like everyone else's and that's just fine.

As we say in the Rush home, "we ain't average!"

Amen.

Lana's the Name... Mini-Bowling's the Game

I'd like to spend some time recapping the events of yesterday's day of "Spring Break Fun".

You know how I told you I was going to whip my children soundly in mini-bowling and then celebrate with a piece of pie?

Well, we changed the plan a little and decided to eat first.

Which meant I had my slice of pie from Bluebonnet Cafe in anticipation of my bowling victory.  I'm not going to lie - I ate the whole piece.  So I felt a little sluggish.

I also woke up with yet another headache from the sinus infection that refuses to be defeated despite two rounds of antibiotics.  I'll be visiting an ENT doctor in the next couple of weeks, I'm certain.

Even with all these factors working against me, I still spanked every member of my family in the first game.

Of course, this did not fully convince them that I am simply a better mini-bowler than all of them so I was challenged to a second game.

Alas, my card did not work so I was never able to play the second game.

I will concede that Ryan's score in the second game was better than my score in the first game but I ask you this:

Don't you think if I was able to beat everyone on the first game with no warm-up whatsoever, it only stands to reason that I would beat them even worse in a second game???

I think so, too.

I also played a game called Carnival Shoot-Out and did so well, I was able to enter my initials on the High Scorers board, something I have never accomplished before.

One more item crossed off my bucket list.

Of course, I'm pretty sure I knocked some five year old kid off the leader board but hey, it's never too early to learn that "life's not always fair" and "practice makes perfect" and "it's not whether you win or lose, but how you play the game" and other harsh life lessons.

We ended our time in Marble Falls by stopping at Sonic for a Vanilla Diet Dr. Pepper and 2 Excedrin Migraine.

Then Reagan and two of her friends headed to my parent's ranch to spend the night.

It's been a while since my parents hosted a teen girl sleepover but they haven't lost their touch.

The girls ran around outside, rode anything and everything with wheels, played soccer and volleyball, ate pizza in front of the outdoor fireplace, watched a movie while snacking on popcorn and cookies, and woke up to breakfast tacos and cinnamon rolls.

The only alarming thing that occurred was Reagan texting my mom at 3:35 AM asking her to wake them up around 9.

At least it wasn't a text from jail, right?

Today's plan?

We're heading to the rodeo fairgrounds to eat junk food, see/smell all the livestock, play those rigged games on the midway, and take a spin on all those rickety rides that surely wouldn't pass any kind of formal safety inspection.

We laugh in the face of danger.

Ha.

Stuff and Things - Plus Lovely Music

It's Spring Break.

We're about to head out to Marble Falls where I will whip my children soundly in a friendly game of mini bowling and eat pie at Bluebonnet Cafe to celebrate my victory.

So I can't really type much today - must save my finger strength for bowling.

Three quick things:

I finally posted some recipes for you!  I know you've been anxiously awaiting this moment so be sure to check them out by clicking on the Recipes tab.

I also finally wrote my first official "tweet"!  Click on the twitter button to follow me and see what amazing (and not quite so amazing) things I post over there.  I have 4 followers already - woohoo!

Last, Ryan and I were watching our new favorite show "Parenthood" last week and they closed out the show by playing an absolutely beautiful rendition of "To Make You Feel My Love".

Did you know it was written by Bob Dylan?  I am not a Bob Dylan fan at all.  I have trouble understanding his incredibly slurry mumblings but I'll give him props for writing this.

Ryan asked if I knew who was singing it and Ryley hollered from her room that it was Adele.  I wasn't familiar with her, which led my daughters to believe I've been living under a rock.  I spent some time on Pandora while cleaning out my office on Friday and let me tell you, I'm an Adele fan now.

And you will be, too.

Click below and enjoy.

Make You Feel My Love

I Have Been Known To....

Send my big girls to school without breakfast - the most important meal of the day.

Wear sweats, a ball cap, tennis shoes, and no make-up to make it appear as if I just finished a workout when the truth is I was just too lazy to get dressed.

Give Lily a baby-wipe and lotion "bath" when I don't feel like giving her a shower.

Allow my children to watch three hours of television in one day.

Serve a "cereal buffet" for supper.

Drive my kids to school while not wearing any shoes.

Display empty picture frames around my home.

Do an entire week of Bible study lessons in one day.

Let my big girls skip a day of school for absolutely no reason.

Kill more than my fair share of poor, defenseless goldfish.

Use one of Lily's socks to blow her nose when kleenex are nowhere to be found.

Never completely fill in any of the kids' baby books.

What about you?  What have you been known to do on occasion?  Any little secrets you'd like to share?

Better Days Ahead

Wow.

Tuesday's post was quite the downer.

That's just the way it is sometimes.

But I do have some good news to tell you.

Lily has been wearing a helmet to school for the past two days.

While it's not quite the fashion statement I would choose, it does seem to be working to reduce the number of times she konks herself in the noggin.

I really think she first started hitting herself for a couple of reasons:

One - She would be frustrated with us because we were not understanding her.

Two - She would then be mad at us for not "listening" to her and giving her what she wanted.

Plus, it's one sure way to get a rise out of Mom and Dad.

Now I think the hitting has simply became a habit.

The helmet serves to lessen the impact of the hit.

And it will also help us determine if she hits to feel it in her hand or on her head.

If wearing the helmet reduces the number of hits, then maybe we can assume she wanted to "feel" her head.  Then we'll rock the helmet and try to start a trend.

If we see no change at all, we'll assume that she wants to "feel" her hands and find a way to cushion those or offer alternative ways to use her hands, such as squeezing play-dough or digging through buckets of uncooked rice.

Make sense?

As you can see, much of what we do around here is guess.

You can read books, do research, talk to other parents.... but at the end of the day, trial and error is often the way we find a solution.

And variety is definitely the spice of life.  What works one day may not work at all the next.

When it comes to Lily, I have learned at least two things:

Planning is important.

But being willing to fly by the seat of my pants is more important.

It can mean the difference between a good day and a great one.

Frustration

Disappointed.

Troubled.

Baffled.

Dismayed.

Worried.

Unsure.

These are feelings that parents of special needs children feel almost every day.

The key is not giving in to the emotions.

But some days are more difficult than others and emotions can get the best of you.

I'm in a little battle with my feelings this morning.

I'll fill you in on our latest dilemma.

Lily's behaviors tend to be cyclical.

For a while, she will engage in something like biting, for example. No one is safe - except for children.  Thankfully, she has never taken a bite out of another kid.  But any adult is fair game, including her older sisters, therapists, and Sunday School teachers.

This behavior will go on for maybe a month or so and then all of sudden, without any warning or explanation, it will just stop.  No more biting.

Of course, many times it is simply replaced with another lovely behavior, such as pulling hair or pinching.

And the cycle begins again, just with a new behavior.

So the days of our lives can often be measured like this:

Biting. Gone. Pinching. Gone. Hair Pulling. Gone. Biting. Gone. Pinching. Gone.....

Get the idea?

Currently, we have one behavior in particular that has stayed the course for a while now, maybe 3 months or so.

And we are at a complete loss as to what to do.

Lily is hitting herself in the head.  Hard.  With a fist.  And when her fist gets sore, she'll use her open palm.  And if her hand gets sore, she'll hit slightly softer.

It is painful to watch.

While Lily has an amazing tolerance for pain, it has to hurt.

She doesn't do it nonstop throughout the day.  It seems to come in spurts.  She'll go an hour or so with no hits and then the next hour, she'll so it 50 times.

There doesn't seem to be any rhyme or reason to it.

I can be playing with her on the floor, giving her my full attention and she'll hit.  I can be driving in the car with her and not paying any attention to her at all and she'll hit.  I can be in the kitchen while she's in her room and she'll hit.  She'll hit when she's eating.

It's just crazy and incredibly frustrating.

Not to mention how much it freaks other people out if they see her do it while we're in Target or something.

Her therapists are trying something new at school today and we'll see how it goes.

But I'm fighting that hopeless feeling because we've all been trying new things for a couple weeks now and come up with only brief moments of improvement.

It's hard not to feel discouraged.

I'll be spending some time today doing research online and looking through my many books for some possible solutions or things to try.

In the meantime, here's the Scripture I have running on an endless loop in my head these days:

II Corinthians 4:8
"We are hard pressed on every side, but not crushed;  perplexed, but not in despair;  persecuted, but not abandoned;  struck down but not destroyed."

Got any suggestions for me???  Would love to hear them!

Did You Know?

Last week, I shared with you how Lily is going to use an iPod Touch as her own personal communication device.

Well, as I was exploring using iPods/iPads as tools for talking, I came across this wonderful blog called:

www.babieswithipads.blogspot.com

It's full of great information for special needs families, such as fun apps for kids, tutorials for various apps, and videos of children using technology to help them speak.

But what about those families who simply cannot afford to purchase a communication tool?

At the Babies with iPads blog, that family can actually apply for a grant and possibly receive a free iPad thanks to some very generous donors.

Here's a little more information on how the process works:

Babies With iPads - iPad Grant Application

If you know a family in need of some assistance, be sure to pass along the blog address.

And for those of you who might like to donate, there are a couple ways you can do so.

You can click on the Chip In link on the blog.

If you're in the market for some apps yourself,  you can follow the blog's link to the iTunes store and a small portion of your purchase price will go towards an iPad and it won't cost you a penny extra.

Every child deserves a chance to be heard.

And thanks to some incredible technology and even more incredible donors, that can be a reality.

Pet Peeves

Ask any of my family members and they'll tell you I have just a few things that really bug me.

You know that squeaking sound that windshield wipers make when there's not much rain?  Can't stand it.

And how about stepping in water with socks on?  Ugh.

Or taking the lid off the butter tub and seeing crumbs all mixed in.  Yuck.

But you want to know something that really, really sets me off?

When people use the r-word in a totally derogatory way.

You know which word I'm talking about.

Retarded.

Even before I became the mother of a special needs child, I never used the r-word.

And when I had my two older daughters, I never allowed them to say it, either.

Of course, since our precious Lily Bird came along, I am especially sensitive to it now.

The word "retarded" has become such an accepted part of everyday language.  Click here to see just how many times it shows up on the world wide web.

I completely understand that most people who choose to use the word "retard" or "retarded" are not directing it towards someone with an intellectual disability.

But even so, the word is a constant and cruel reminder to those with special needs (as well as their family members) that they are considered stupid, idiotic, and just not worth much in our society.

A person with intellectual disabilities already feels different from everyone else.  Using the r-word isolates them even more.

The sad fact is that many people in this world look down on those with intellectual disabilities and using the r-word in our speech is proof of that.  

And there's simply nothing at all funny about that.

Together, let's make a change.  Let's start a movement of the heart.

Let's all remove the words "retard" and "retarded" from our speech.

And let's replace it with a better r-word:  respect.

A New Way to Talk

Every day, I pack the same things in Lily's school bag - snacks, drinks, a change of clothes, a lunch.... that kind of thing.

But next week, Lily will be bringing something a little different to school.

Her very own iPod Touch.

We're really hoping that she can learn to use it as a communication device.

There are literally thousands of pictures that can be grouped into categories such as foods, toys, and clothes, just to name a few.  Lily can use those pictures to let us know exactly what she wants.  The device will even speak the picture she selects.

Click here to get a better idea of how it works.

Say we are sitting down to eat supper and we're eating roast, rice, and peas.

Lily may want to eat all of her peas before she eats her rice.  Or she might need a drink before she takes another bite.  Or she may not be hungry at all.

She can use the iPod to tell us any of those things and more.

The possibilities for communication are endless and we're so excited to give it a try!

Of course, Lily may use it to tell us that she really hates roast, rice, and peas and would rather have popcorn for supper.

And you know what?

I'll let her have it!

Word to the Wise

When I was a kid, there were several things that my parents said that I swore I would never say to my kids.

But I do.

I can't help myself.

Some things are just too good to not be passed along to the next generation.

Like these oldies but goodies:

"Because I said so."

"Don't say another word."

"It's best for you to tell me yourself right away than for me to find out later from someone else."

"This hurts me more than it hurts you."

"Quit crying or I'll give you something to cry about."

"Pick up all this piddlin' stuff."

"If you can stay up late on Saturday night, you can get up early for church Sunday morning."

"Any dummy can sit in class and keep their mouth shut."

"I don't care what everyone else is doing.  I care about what you're doing."

"One day you can be the mom and boss your kids around."

"As long as you're in my house, you go by my rules."

These parent-isms seemed so unfair at the time.

And so many of them just didn't make sense to me at all.

I mean, "Quit crying or I'll give you something to cry about."

Huh?

I thought the whole point was to cry so we could all just move on about our business.

But no.

It had to be crying for a good reason.  A parent approved reason.

Now that I'm the mom and I get to boss my kids around, I can't help but smile when I use one of these pearls of wisdom from my parents.

Because I get it now.

Score one for ol' mom and dad.

All Aboard the Crazy Train

Aren't there some things about your kids that just drive you nuts?

Sure, as parents, we love our kids unconditionally and would literally lay down our lives for them.  It's not the kids themselves that make you crazy.... just some of the goofy things they do.

And of course, there's always a little bit of self-inflicted guilt when some of the things your special needs kids do drives you batty.

I mean, really, Lily has enough to deal with and it's not like she's doing it on purpose, right???

Wrong.

While some of Lily's behaviors are not her fault (motor planning, speech....), I'm beginning to recognize that mischievous little glint in her eye.  That spunky look on her face.

You know the one I'm talking about.

The one that says, "I'm about to do something I absolutely know I'm not supposed to do just to watch you lose your very mind."

Manipulation at its best.

Lily will run over to outlets with something plugged in, touch the cord, and stare at me.

She will grab the handles of her dresser drawers, act like she's going to climb it like a ladder, and stare at me.

She will open hand slap the i-Pad and stare at me.

She will fling open the refrigerator doors and stare at me.

Are you noticing a trend here?

The stare.

The direct eye contact that sends the message, " What'cha gonna do, Mom?  I dare you to say no."

And so I do.

I say no.

To which she then skips off, laughing at me and looking for something else to get into.

Now, I've never really been a mom who struck terror in the hearts of my children but I'm also not the mom who waits for dad to get home so he can discipline the kids.

But I've always admired the fact that my husband can simply say, "No!" in a firm and authoritative way and daughters all over this house crumple.

I found myself engaged in this conversation a few days ago:

Me - "I don't know why Lily doesn't listen to my no the way she does yours."
Ryan - "You're not saying it firmly enough."
Me - "No!  NO! N-O!  NOOOO!"  (that was me practicing for Ryan)
Ryan - "That's better but you need to look unhappy while you're saying it."
Me - "This is so hard.  I want to make her cry like you can.  You're so lucky."

Sad, I know.

Secretly, I think part of the reason I can't seem to drum up the emotion to give a good "No!" is this:

Deep down, I'm happy to see her act "normal".

I'm glad to see her doing the exact same kind of crazy-making behaviors that her big sisters did.

I like the fact that she's testing the discipline waters like every preschooler on the face of this earth.

A very small voice in my brain can't help thinking, "You go, girl.  That spunkiness is what's going to see you through many challenges in life."

Some of you reading might think I need intensive therapy.

And you're probably right.

I'm not saying this is wonderful parenting advice.

I'm just saying I like the challenge.  And I'm up for it.