Tuesday, April 30, 2013

Make Your Own Stylus

I think I've pretty much established that Lily Bird is a whiz with electronics.

We were in Target a couple of weeks ago and she spotted the Nook on display.  She has never touched a Nook in her life.  Within 30 seconds, she had it up and running and was playing an app.

I don't know why it continues to surprises me how quickly she takes to electronics.  Maybe because I am such a dunce when it comes to electronics and still need a handwritten checklist to remember how to upload photos to the blog.

Oh well.

Let's move on to something I actually do know how to do.

So Lily has been working on spelling and writing her name.  

And between home and school, that child has written her name one thousand different ways - with stickers, filling in bubble letters, in shaving cream, with torn bits of paper, on a dry erase board, in fingerpaints, on an easel, with bottle caps, even the steam from her breath on a window.  

Of course, the ultimate goal is to have her write her name on paper while holding a pencil with the proper grip.

And we're about to get one step closer to that goal.

Since Lily is so motivated by all things electronic, her teacher wants to introduce her to a stylus.  But most styluses... styli.... or whatever the plural of stylus is, are quite pricey.  And many of them are thin and slick; not something that lends itself to easy use by a kindergartener.

Enter Pinterest.  

And the do-it-yourself stylus.

And just a little bit of a closer look....

I am here to tell you that these little babies work.  And they are cheap.  And they are easy to make.  Even an electronic dunce like me can make them.  Probably because there is nothing electronic involved in crafting them.

But before I send you off to the website that shows you how to make them, I offer a few little tips that might help those of us non-sciency types, such as myself: 

1.  When you buy the wire, do not buy memory wire.  You will spend lots of time getting frustrated and wanting to curse trying to get that wire to wrap around that marker while it keeps springing back to its original larger shape.  Not that I have any first-hand experience with this....  Just don't buy the memory wire, ok?

2.  The directions will tell you to wrap the wire about halfway up the marker, leaving it exposed in the middle.  Again, I have no first-hand knowledge but someone thought it might be nice to just cover all that wire up with that colored duct tape so the kids wouldn't pick at it.  Turns out your fingers must come in direct contact with the wire in order for the stylus to work.  Who knew?  Sciency stuff and all that.

3.  After finishing a stylus, I attempted to use it on my i-Phone to see if it worked.  It didn't.  
I watched the tutorial again for the gazillionth time.  I really had done everything right.  Tears were about to be shed.  Then a thought came to me.  I was making these Monday morning.  I had successfully made one stylus on Sunday night.  What was different?  Well, I remembered that when I opened the package of sponges Sunday night, they were ever so slightly damp.  And now, Monday morning, they were bone dry.  Feeling like a total dork for even trying this, I wet my fingertip and dampened the sponge tip.  And eureka!  It worked!  And then I still wanted to cry because why, why, why does science have to be so hard??

Despite the fact that I am clearly not a science girl, I have now made four of these.  If I can do it, anyone can. 

I'm so excited to see all the ways we can use this stylus to encourage Lily to write.  And maybe one day, we'll actually get to good old-fashioned pen and paper.


Ready to make one yourself?  

Digital Kindergarten has step-by-step directions, as well as two different video tutorials.  Click here to get started.

Have a great week, sweet friends, and I'll see you Friday.

Friday, April 26, 2013

Are You a "Word Nerd"?

I don't know about you but I love words.

There's just so many ways to enjoy words:  reading, speaking, writing, listening, singing.

I love how different words mean different things depending on where you live.  For example, "boot" in England means the trunk of a car while in Texas, it's pretty much required footwear.  In the UK, "bum" is a polite way of saying "booty" and in the US, it's a vagrant or someone who's lazy.

I love listening to different dialects.

And finding that perfect word at just the right moment?  There's something so satisfying about it.

image via http://celaeno.soup.io/tag/book?since=196971013

So it may come as no surprise that I'm a total sucker for almost any type of quiz that tests my vocabulary.  Somehow, if I'm doing an online vocabulary quiz, it feels so much more productive than browsing Facebook or Pinterest.  I mean, I'm engaging in lifelong learning, am I right??

If you happen to share my love of words, then you might enjoy the following websites:

www.freeerice.com  For every correct answer, 10 grains of rice are donated through the World Food Program to help end hunger.  Also, each correct answer leads to progressively more difficult words.  Feeding hungry people while testing your vocabulary?  A total win.

vocabulary.com Word challenges complete with Leaderboards if you want to get real serious.

Merriam-Webster Online has several fun word games -

Vocabulary Quiz

Name That Thing - a visual vocab quiz

Spell It

True or False

Looking for more word fun?

Click here to discover the most annoying words of 2012 according to the Marist Poll.

And here are the 10 Best Words the Internet has Given English.

image via Busy Teacher

Have a happy weekend, friends - and thanks for reading all my words!

Wednesday, April 24, 2013

Rush Family News

What time is it?

Well, it's past time for a post, I'll tell you that.

How about a little update on the Rush house happenings?

1.  Remember our newest addition, Prada, the precious German Shepherd puppy?  Click here if you missed it.  Well, it turns out that I am allergic to dogs.  And Reagan is allergic to dogs - as in, with prolonged exposure, severely, EpiPen allergic.  We had to say good-bye to our sweet puppy and return her to the breeder who has since found another family that loves her and can breathe around her, too.  Thankfully, Lily never really bonded with Prada so I didn't have to pry the dog away from her.  That would have made it even more heartbreaking.

2.  The Roomba.  Also mentioned in the previous post link above.

iRobot Roomba 650

Even though an indoor dog was the reason we purchased the Roomba, I didn't have to take it back, too.  Which makes me really happy because I love this vacuum.  I can't tell you how happy it makes me to see that little thing running around my house, keeping my floors clean.  It does my tile, my rugs, my carpet, and my wood flooring.  And it changes to those surfaces without a hitch.  I do have to get a few things out of its path, like plants and a couple of electrical cords.  But moving those things is easier than dragging out my vacuum.   Roomba vacuums.  I mop.  And that is sweet.  It gets my stamp of approval.  Plus bonus?  Lily likes it, too.  Probably more than she liked the dog.

3.  Ryley comes home from college on May 9th.  Happy mom.

4.  Reagan got her driver's license Monday.  Happy, happy mom.

5.  We had a great ARD meeting last week.  And Lily will be attending what I think is going to be an awesome summer day camp that should be both fun and beneficial for her needs.  Happy, happy, happy mom.

6.  For the fourth summer in a row, the Rush family will be headed to Aspen in June.

Aspen, CO

Oh Aspen - how do I love thee?  Let me count the ways:  Hiking, biking, swimming, reading, mindless television watching, wandering around town, window shopping, eating oatmeal pancakes and Paradise Bakery cookies, browsing the bookstore.... rest, relaxation, and good family time.  Is it June yet??

File:Downtown Aspen, CO, with view to ski slopes.jpg

 So what about you?  Any big (or little) news going on?  I love keeping up with you!

Have a great Wednesday, friends.

Tuesday, April 16, 2013

A Plea for Prayer

I'm going to bet quite a few of you have already seen this.

But for those of you faithful readers who are not Facebook friends, here's what I posted yesterday:

There is a neurologist in New York City that other doctors call when they have exhausted all their own ideas and need fresh eyes. A neurologist with the gift of diagnosing and treating "medical mysteries". Today, that same neurologist in New York City will receive an envelope from UPS, containing Lily's medical record from this past year. The record of our own little "medical mystery". We are right on the cusp of yet another road in our journey with Bird. Please be in prayer for us and Dr. Souhel Najjar. It is appreciated more than words can say.

If you're the praying kind, we'd be ever so grateful if you would join us in our latest "bend in the road".

You are a blessing to us, sweet friends.

Friday, April 12, 2013

News You Can Use - Volume 6

My round-up of helpful hints, interesting tidbits, and all-around great stuff from the inter-webs.  Enjoy!

  • It's come to my attention that I am failing miserably at finding the balance between being just me as myself, me as a wife, me as a mom to two teenagers, and me as a mom to a special needs child.  Typically, me as special needs mom is the most dominant role.  But it's time to make some changes and among other things, I'm hoping this book will help me. 

  • And on that note about finding balance, Sleep vs. Exercise - Which should you choose if you don't have time for both?
  • Did you know that you can transfer paper worksheets to the iPad?  Well, you can.  Click here to find out how.
image courtesy of Creative Learning Fun
  • I've never been all that great at accessorizing but with the help of Pinterest, I'm getting better.  And with Everyday Icing Accessory Auctions that take place Monday nights on Facebook, I'm getting some really great jewelry at fantastic prices.  It's easy and fun - check it out here.
  • Spring is in the air and for lots of people, that means spring cleaning.  BrightNest is a terrific website, as well as a mobile app, that can help you take care of your home.  With lots of practical, easy, and efficient ways to clean, organize, maintain and decorate your home, it almost makes managing your home fun.
  • Doing Paleo?  Tired of eggs for breakfast?  How about some pancakes?  Or super yummy Morning Glory Muffins?  I've tried both of these - more than once - and they are delicious.  The Bird gives both recipes two thumbs up!
  • Last but not least, a couple of Lily's favorite apps right now are Sentence Maker and Letter School.  They are that magic combination that every parent hopes for - educational and fun.  She plays them almost as much as she watches Netflix or youtube, and that's saying something, folks.  I know every kid is different but I think they're worth a look.

image courtesy of Ecojot

Tuesday, April 9, 2013

Five Favorites - Summer Shoes


Today's post has absolutely not one single thing to do with special needs.

But sometimes, a blogger just needs to take a minute to address really important issues when they surface.  Those things that have a significant impact on our culture today.  Those topics that really say something about society as a whole.

Things like... shoes.

Easter has come and gone.  Which for us true Southern belles means we can now safely wear our white pants.

And I got a pedicure week before last.

So Easter + pedicure = summer shoes!

Here are five of my favorite summer shoes.  Or, to clarify, my five favorites at this moment.  Who knows what next month will bring?

First, for the ridiculously expensive - the Donald J Pliner Fifi sandal:

Donald Pliner Fifi Sandals

They even have a ridiculously expensive name.  Fifi.  Really?

I've had my eye on the black or bronze pair for three summers now but just can't bring myself to pay $160 for a pair of what are basically glorified flip-flops.  I mean, do you know how many hours of speech therapy that would pay for?  Oh wait.  On second thought, that's only about one hour of therapy so not such a great comparison.  Never mind.  Does it make them worth the price if I said they would be for church?  Didn't think so.

Next up - the Sam Edelman Gigi sandal:

OK.  What is it with me and ridiculous sandal names?  Fifi.  Gigi.  Sounds more like names of poodles.

Any-who, I wanted these last summer but again, the price is just more than I really want to spend for so little shoe.  $65 for a pair of boots or running shoes?  Yes.  $65 for tiny little strips of leather and a sole? Not so much.

For those days when the pedicure is not looking so hot, how about these cute little French tennis flats:

Just so you know, I feel about one hundred times hipper just saying "French tennis flats".  And also?  That's elastique on the top of them, not to be confused with elastic.  I love the colors and the ease of just slipping them on when you're running out the door.  But alas, my refined taste once again exceeds my budget.  These cute things are about $55 a pair.

OK, y'all ready for this?

Red. Polka dots.  $40 at Macy's.  Come on.  Do I really need to say more?

But, truth be told, I spend the bulk of my summer in flip-flops.  Granted, they are leather flip-flops which makes them as nice as flip-flops can be.  And my all-time favorites are Reef Uptowns:
Reef Women's Leather Uptown Sandals
Not the prettiest shoe around.  No elastique.  Or polka dots.  Or ridiculous poodle-y sounding name.   Just good old comfortable shoes that I can say have lasted me three summers now.  Coming in at around $35, that's a pretty good price per wear average.

So what about you?  Are you thinking about summer shoes or is it still cold where you are?  Got your eye on something cute for summer?  Do share!  Because honestly - is there really any lady out there who doesn't love shoes?

Friday, April 5, 2013

What Song Takes You Back?

A few weeks ago, one of my online mom friends was talking about how hearing a certain song can trigger particular memories for you.

In her case, it was "Come Away With Me" by Norah Jones.  Ellen's son, Max, has cerebral palsy and suffered at stroke at birth.  This song came out about the time Max was born and so whenever she hears it, she's carried back to that time and all those car trips to various doctors and therapists.

I have a song like that as well.

Lily had open heart surgery at 4 months of age.  While she lay recovering in the Pediatric Intensive Care Unit at Texas Children's Hospital in Houston, we played a lot of soft music in her room.  It gave everyone something consistent and pleasant to listen to in the midst of all the noisy machinery.

One song in particular just spoke to me and soothed my soul in the middle of some of the scariest days of my life.

Now I'd like to say it was something deeply spiritual, filled with rich verses of Scripture.

But that would not be true.

While much Scripture did bring me comfort, Alicia Key's song, "If I Ain't Got You" reminded me that nothing in the world at that time was as important to me as a living, breathing baby girl with a healthy heart.  Not to sound overly dramatic, but it's funny how meaningless "stuff" becomes when you're in the midst of a life and death situation.

I cannot listen to that song to this day without crying.

When I hear it, I am swept right back to that hospital room, surrounded by beeping and blinking medical equipment, with nurses quietly coming in and out.  I am putting my hands on my baby girl and pleading with God to heal her.  To let us take her home.  To let her be a part of our family.  To love her.

Such a simple song.  Such powerful emotions.

Do you have a song like that?  One that stops you in your tracks and transports you to another place or time?  I'd love for you to share it with me.

This post wouldn't be complete with giving you an opportunity to hear the song that takes me back.  Click here to listen.

Tuesday, April 2, 2013

World Autism Awareness Day: Light it Up Blue - But Get Loud, Too

I'm sure by now you know that today, April 2, is World Autism Awareness Day.  The day we are all supposed to light it up blue to bring awareness to the growing number of children diagnosed with autism.  

And I'm sure by now you know that I am tired of talking about "awareness".  In fact, I just recently published a post entitled "Enough Awareness. More Action".

I am ready to see a total change in thinking.  I am ready for a unified and vocal stance from parents.  I am ready for some action from the medical community.

So today, yes, let's light it up blue.  But let's also get loud.

This is a "from the archives" post, which originally appeared on the blog in July 2012. 

Unquenchable thirst.  Insatiable appetite.  Unexplained weight loss.  Bed wetting.

These were the symptoms that manifested themselves in our firstborn daughter back in 1998.

The diagnosis?

Type 1 Diabetes.

And thus began a daily regimen of insulin injections, monitoring blood sugar, analyzing ketone strips, carbohydrate counting, and dietary adjustments.

In researching diabetes, I quickly learned that there are two types:

Type 1 (also called Juvenile Onset) is insulin dependent, meaning the pancreas totally stops producing insulin and for the rest of one's life, insulin must be given on a daily basis plus extra after eating as a constant maintenance dosage to keep blood sugars regulated.  In other words, there is no cure.

However, Type 2 Diabetes can be cured, usually through diet and exercise and short term insulin treatment, usually in the form of oral medication.  In Type 2 Diabetes, the pancreas can often begin re-producing insulin with appropriate medical and lifestyle changes.

And therein lies the problem:  many people are unaware that there are two kinds of diabetes, especially back in 1998 when Ryley was 5 and first diagnosed.  So whenever I shared that Ryley was diabetic, I frequently heard comments such as:

  • "I bet you're feeding Reagan less sugar now that Ryley has diabetes." - implying that I had somehow caused the condition by feeding my child endless amounts of junk food.
  • "Well, don't worry about Ryley because I have an aunt/uncle/grandmother/..... who had diabetes and they just quit eating sugar and started exercising and it went away." - implying that we had an unhealthy lifestyle and once we made some changes, she would be cured.
  • "Why are you giving her insulin shots? Don't you just want to have her take the insulin pills?" - implying that I had not done my research and just liked sticking my kid with needles everyday.
And my personal favorite, shared with me while I was leading a Ladies Bible Study, standing in front of a large group of women and telling them about Ryley's diagnosis:
  • "You know there's a cure for that, right?" - implying that I was a lazy mom, too lazy to research treatment options for my daughter and take care of her to the best of my ability.  To which I patiently replied that there is no cure for Type 1 Diabetes, the particular kind that Ryley has.  To which she replied, "Yes there is." To which I replied, "Actually, there isn't.  Her pancreas no longer works and never will again.  Therefore, she must get insulin injections for the remainder of her life."  To which she replied, "That's not true.  There IS a cure!" To which I replied, "You are a stupid idiot."  Actually, I didn't say that, but I was thinking it.  I just told her she might want to share her "cure" with me after our Bible study.  And then I fervently prayed that God would keep me from punching her in the throat.
Honestly, it was exhausting to be in the midst of caring for a diabetic child and also having to educate the public about the difference in Type 1 and Type 2 Diabetes.

Hmmmm... sound familiar?

Kind of like it's exhausting to be in the midst of caring for a child with autism and also having to educate the public about it.

It's exhausting to watch the way people disagree, pick apart each other's words, cast judgement, and basically tear one another down over differing opinions.  

And I'm not talking about the general population here.  

I'm referring to the autism "community". 

Genetics.  Vaccines.  Environment.  Hate.  Acceptance.  Cure.  Regression.  Born with it.  

All of these words, and many more, can trigger heated discussions amongst the autism community.

A couple of firestorms erupted this past week - one in which a fellow blogger admitted that sometimes, she wishes her kid was "normal".  And another in which a journalist father expressed comfort in knowing that his son will not have autism in Heaven and how this thought helps him get through the day.

And of course, what followed was the typical response from the autism community - 
  • "Are you implying that your child isn't normal?"  
  • "What does normal even mean?" 
  • "Do you realize how your words communicate to your child that something is wrong with him?"
  • "Do you mean to say that the only way you get through the day is wishing your child was dead so that he would no longer have autism?"  
  • "Do you realize that speech like this (from a journalist, no less - someone who makes a living with their words!) encourages hate and nonacceptance of individuals with autism?"
  • "Your need to express how it feels to raise a child with autism should never come at the expense of disrespecting an entire population of people with autism, especially your own child!"
Wow.  Who wouldn't want to share their feelings with their fellow autism parents with such great support like that?

I wonder how much good we can do for our kids when we can't even get along within our community, let alone trying to make a difference in greater society.

I'm also wondering if some of this tension is created because really, when you get down to brass tacks, like there are two kinds of diabetes, there could be two different kinds of autism.

Hear me out.

This really won't be any new revelation to parents of children with autism or autistics themselves but as I see it, there are basically two "camps" within the autism community - those who believe their children were born with autism and those who believe their children were absolutely fine at birth and then regressed, usually around 18 months of age.

And I think these different belief systems are at the core of many of our disagreements in the autism community.

When you believe your child was born with autism, you believe that that is just who he is, who he was designed to be.  Autism is an innate part of his being, just like hair color or left/right-handedness.

When you believe your child was not born with autism but rather regressed and became autistic later in life, you do not believe autism is part of his genetic make-up.  You look at autism as an intruder, a foreign body who somehow invaded your child and changed who he is.

Those core beliefs are certainly going to affect how you view your child and how you view what others express about autism.  I don't believe we're ever going to see eye-to-eye on this issue and we're wasting time, money, resources, and education arguing over which "camp" is right.

I fall into the second camp.  If you're interested, I wrote about my difficulty in accepting autism in Lily and if you click here, you can read it.

While I've seen first-hand the ineffectiveness of having a medical condition with one name, clarified only by Type 1/Type 2, I wonder if we had something like that to describe autism, if it might allow us to separate ourselves into our respective "camps" for those moments when we need support from like-minded people, but also allow us to set aside our "camps" and come together for those times when unity is needed to make a difference for our children.

I'm not necessarily proposing a Type 1/Type 2 Autism but maybe something to differentiate between those two belief systems might be helpful.  It would communicate to others in the autism community that while we have a differing view on how our children came to be autistic, we can still get along and work together to make a difference.  I won't belittle you for believing your child was born autistic if you won't belittle me for believing my child could one day recover from autism.

Case in point - Lily's doctor will whole-heartedly tell you she does not have autism.  

He believes she has NIDS, or Neuro-Immune Deficiency Syndrome, of which the symptoms are very similar to autism.  His mantra is, "Call it what you want.  But don't call it autism."  He firmly believes that 99% of children who developed neuro-typically then experienced regression are misdiagnosed with autism.  He firmly believes that with the proper medical treatment (by an MD - not by biomedical interventions, vaccine-avoiding, GFCF, hyperbaric oxygen, and so on....), these children can recover.  Not in spite of autism, but because they never had it in the first place.  

Why is this important?

Because no matter what Lily's diagnosis, I am 100% sure she was not born with autism.  Autism does not define her.  It is not an innate part of who she is.

So when I admit that there are times I wish Lily was "normal", I am not attacking her as a person.  I am not attacking who she is.  I am attacking an intruder in her body that stole who she is and that I intend to do everything in my power to eliminate. 

This does not mean I am going to murder my child or am encouraging other parents of autistics to do that.  This does not mean that I wish she was dead so she can be healed in Heaven.  It does not mean that I hate my child.  

It means that I love her with every fiber of my being.  And it means that I would give up my own speech if it meant she could talk.  It means I wish she could say what I see her struggling to communicate.  It means I wish I didn't almost literally see the wheels in her brain turning, trying to figure out what I'm saying and how she's supposed to respond.  It means that I wish with my whole heart that I could make life easier for her.  

Bottom line? 

I don't think all kids have the same kind of autism:  

Type 1 Autism - Born with it, innate part of who you are, no recovery, fully accepting

Type 2 Autism - Not born with it, regression, belief that recovery is possible

If we could all just accept that we're coming from two different "camps" and quit trying to force each other to agree, maybe we could bring about some real change for our kids.

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