Okay my title doesn’t make sense.  There’s no such thing as planning the future when you have a child with special needs.  The future is 2 minutes away.  Sometimes the future is 37 seconds away.  I would venture to guess that any parent of a child with special needs might have a slight panic attack when thinking about the future with their kiddos.  I know I do.  So many people have asked me what we’ll do for Emma’s school after her 2 years are up at her current school.  And of course I’ve asked myself the same question.  It’s a hard answer.  I actually can’t answer, so I don’t.

Last week we took Emma to see a peds dermatologist at PCH to take a peek at a mole she’s had since birth.  He gave us good news in that it didn’t need to be removed.  We were thankful, because removing this mole meant general anesthesia for her.  And that’s always tricky with her.  Anyway, he gave us changes to monitor, should they occur.  And then he was very direct and said that we’d be able to closely monitor the mole as she would be living with us indefinitely.

It’s a tough pill to swallow.

Our daughter will live with us indefinitely.  Chances for marriage are slim.  Chances for children are slimmer.  She may not carry a full time job.  Or go to college.  I’m of the philosophy “never say never”, but I’m also realistic.  I don’t need to jade myself into what may be.  Because truthfully I don’t know.  But like I said, I’m realistic.

We’ve thought about the future in that we know where we want to live.  We’d like to buy my parents house and give it a facelift.  There’s a great backyard.  It’s a nice size.  Big enough to build a little guest house back there.  That would be for Emma.  It’s what I think about.

Emma’s coming up on her 8th birthday.  Santa kind of let her down by not getting her a new Princess bike.  Sadly, Sally hasn’t really caught her attention much either.  So for her birthday, her parents are stepping up their game where Santa dropped the ball.  She’s getting a bike.  Here’s is why she needs an Electra Hawaii Beach Cruiser:

• It matches my bike.  For real.
• It’s pink and pearly.
• It’s got one speed…she’s not going to be needing to switch gears anytime soon.
• It doesn’t have the complications of hand breaks.
• There’s plenty of room for a basket.  And a bell.
• It would be easy enough to have a bike shop outfit this Cruiser with training wheels.  And still keep it looking retro.
• She would love it.

So we need to get it.  That much is obvious.  What else is obvious is that we need to get our butts in gear (no pun intended).  Her birthday is less than a month away.  Anyone know of any good bike shops that could put some extra wheels on this bad boy girl?  Maybe I should contact Electra.  I bet they could help me!

Electra for Special Needs!

(By the way, Electra has no clue who I am.)  (And I’m also diggin’ this pink color!)

Post Edit: I went to the Bicycle Ranch on Tuesday and they totally hooked me up with this bike shown above!  They also will outfit it with some snazzy training wheels so my girl feels safe and secure. If you head over there (they’re in North Scottsdale) Markus and Chris will take care of you!  I will be bringing my own (pink, natch) beach cruiser in this weekend for a tune-up!

“I think the heart just gets broken — wide open.”

-Amy Upchurch (on how becoming a special needs parent changes a person for the better)

I share this story, running the risk of opening a can on worms.  I’m okay with that, mostly because it’s my blog and I can share what I believe.  But I am always open to hearing the points of view of other people, in a respectful manner, of course.  Did you watch 60 Minutes last night?  The first segment was on the use of stem cells.  It’s something that is a familiar topic to me because there are people I know (online and in real life) who have gone to China to have stem cells injected into their children in hopes that their children’s vision will be restored or improved.  These children, like Emma, have Optic Nerve Hypoplasia (ONH) .  The difference is the amount of vision.  Emma is lucky in that she has unilateral ONH; she only has it in one eye.  And fortunately, her “good” eye has near perfect vision.  So while she’s technically blind in her “bad” eye, you wouldn’t really be able to tell.  What if Emma had bilateral ONH…would we take her to China?  I don’t see that happening, but since I’m not in that situation, I can’t really say.

Given the information I have now about stem cell research, and what they’re doing in China (or other countries such as Mexico and Ecuador), I’m pretty sure I wouldn’t take her to any other country to receive stem cells.  Emma’s neuro-opthalmologist, Dr. Borchert in L.A., has very strong opinions on the stem cell therapy going on in China.  I’ve asked him about stem cell therapy in China, as I was just curious.  He says that stem cell therapy is the most promising form of therapy for ONH, however it is not even close to be used in humans yet.  He promises that it is coming, though.  What they’re doing in China, basically experimenting on humans, is considered unethical in the United States.  You can read more about his statement on stem cell therapy here. There’s another good story on stem cell therapy in China here.

Something interesting to keep in mind about ONH. Vision cannot get worse with ONH.  In fact, more often then not, vision can improve during childhood years.  And Emma is living proof of this.  At her last appointment, she went from seeing solid objects with her “bad” eye, to being able to see which direction the E is facing on a wall 15 feet away.  We have no answers as to why this happens.  But with good news like this, I don’t really need a reason!

Watch this story on stem cells from 60 Minutes and let me know what you think.  I am very open to a respectful discussion on the subject.  Feel free to leave a comment or post on my Facebook page, Jumping Waves.

On a lighter note, if they had stem cell therapy for mood swings, possessed children, or ADHD, I might consider it.

As I’m typing this, Emma is downstairs struggling with speech therapy.  Our speech therapist is awesome.  She’s relatively new to us; she’s been working with Emma for a few months now.  But she’s full of energy and has a great rapport with Emma. Today, however, is challenging.  The SLP (Speech/Language Pathologist) is really making Emma work hard on her V’s.  Her V’s still come out like B’s.  And already I’ve witnessed minor temper tantrums just ready to mature into the full-blown meltdowns.  I really hope Emma can hang in there.

Again, we use positive reinforcement and rewards to help encourage her.  On Speech days, it’s a chocolate milk (with whipped cream, of course) from Starbucks.  Something I could easily make for a lot less money, but surely a big treat for Emma.  We’ll see if she earns it today.

Is there a therapy or a subject in school that your child struggles with?  How does he or she persevere through?

Part of Emma’s diagnosis of Septo Optic Dysplasia (SOD) is that she is hormone deficient.  So we replace the hormones her body doesn’t make, or doesn’t make enough of.  She gets cortisol replaced, thyroid, and growth hormone (hGh).  hGh is, of course, the drug that’s been in the media for being used by many athletes to “enhance” their performance.  In actuality, hGh just really helps with recovery.  Period.  With Emma, hGh doesn’t just help with linear growth.  It helps with overall growth of her body; organs, tissues, bones, etc.  The insides of the insides.  So it’s very important she receives her shot every night.  When I first found out we had to give her a shot every. single. night. I was mortified.  I actually couldn’t give her the shot until about 1 month post diagnosis.  I just couldn’t bring myself to do it.  We’d have to hold her down.  I’m not sure how long the holding-down part lasted, but now she thinks nothing of it.  In fact, she rolls up her sleeve and sticks out her arm.  Because, you know, she’s a champ.

So anyway, on Tuesday, Emma’s “specialty pharmacy” called requesting I refill her growth hormone.  It is a nice courtesy that they call me to remind me it’s time for new hGh.  I can’t complain there.  So I chatted with them, giving them all of the same information they’ve received for years.  Nothing has changed, not even the dosage this month.  Anyway, whatever.  It’s protocol.  I get it.

In 2 days, the shipment arrives.  A huge box. Containing medicine.  See it? No? Yeah, the boxes are small.  The vials even smaller.

The vial in each box? They are 10 mg each.  That equals 25 days worth of medication.

They’re stored in the fridge.  At 36* F. Next to the 5 Hour Energy and the milk.

It’s stored next to the milk in a handy (and secure) carrying case.  That case goes with us anytime we go somewhere overnight.  Which means we need some good ice packs!

The needles? Those are 30 gauge and 8 mm long. They don’t hurt…I don’t think.  I’m too chicken to try it.  Pathetic, no?

The bill?  Yeah…that’s the doozy.  Keep in mind…this total is for 25 days of medication.  Not even one full month.

Still there? All I can say is Thank God for Medical Insurance. Period.

I’d like to start off by thanking my new readers.  Yesterday’s post must’ve hit a huge nerve.  I didn’t get so many comments, but I got tons of readers.  A lot more than normal.  Thank you!  And welcome.  I wish I could take credit for the beautifully written post.  Phoebe, of Herding Cats, was the author of this beautiful post.  So please, thank her!  If you’re new here, stay for awhile, poke around, and learn about my family, and my daughter Emma, who has special needs.

Emma went back to school on Tuesday. I’d be lying if I said I wasn’t totally looking forward to January 3rd.  This Christmas break was rough for us.  I was a little apprehensive about how Tuesday morning would go, getting her back into the routine.  I had every right to be apprehensive.  She was NOT ready for school.  NOT ready to get up early.  NOT ready to immediately get dressed, let along immediately do anything.  When she gets in these fits of rage, she honestly looks like she’s possessed.  And I really do not say that lightly.  It’s scary.  It’s also exhausting physically and mentally.  On Tuesday we had to physically place her in the school bus and buckle her up.  The bus driver was so nice to call us once she got to school safely to let us know that she had calmed down by the time they turned the corner.  But that tantrum she threw (actually, what’s a stronger word for tantrum?) had taken its toll on Brett and myself.  The effects lasted much longer with us then they did with her.

This morning she had another blow-up.  This time, I actually wondered if this kind of behavior warrants a trip to the psychiatric unit at the hospital.  One of the signs they look for is physical harm to herself or others.  Check.  The girl is 70 pounds (thanks to a nasty side-effect of a summer time medication). Not a lightweight anymore.  One thing I need to do is email her behavior analyst/school psychologist and give him the low down.  Hopefully he has some quick words of advice to offer.  Because this is tough stuff.  I know that this is mostly about her getting back into the routine.  But still.  These tantrums are of the biggest proportions.  I am actually dreading 6:30-7:40 every morning now.

I’ll keep you guys posted on what happens…hopefully this won’t last long.  I’ll tell you what.  It makes me very nervous for spring break, and more importantly, summer break.

In more exciting news, I got the little piece of paper in the mail that said my articles of incorporation for my Jumping Waves entity has been approved!  And while I thought I was officially a non-profit organization, I just need to jump through the 501 c 3 hoop, and then I will be!  But I’m one step closer!  (That hoop, by the way, is 28 pages long.  Eek!)

Here is my business card.  I’m so proud of it!

Right now I am just trying to get the word out.  I need as much exposure as possible, so I can generate interest.  Interest will perhaps get me donations, or perhaps people who feel passionately about my cause and would like to invest in it.  If you like what you’re reading, and my mission, I would love for you to pass along my blog.  That would mean so much!  Don’t forget, I also have my Etsy Store where all of the proceeds from the sales go directly to Jumping Waves.  Easy as that. You can also support me by following me on Twitter and Facebook.

Last night, a friend of mine posted this blog’s entry on Facebook.  Man, am I glad she did.  I’ve been thinking this in my head for, like, forever.  But I couldn’t type out my feelings in a way that might be coherent…not even just eloquent!  But Phoebe, of Herding Cats, has done just that.  Thank you, Phoebe!  I’ve reposted this, not in its entirety, so maybe someone will think twice before using the word “retarded”.

All around me, people use the word retarded without a second thought.  Sometimes, I’ll say “Um, dude, really?” and they’ll say “Oops, my bad!  But really!  I was being so retarded!”

Sometimes, I let it slide.  I realize that it’s a word that’s ingrained in our society’s vocabulary and people use it without a second thought to its meaning.

But what does it mean to be retarded?  Well, I know what it doesn’t mean.

It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.

It doesn’t mean not being able to find your car keys.

It doesn’t mean saying the wrong thing to a person.

It doesn’t mean forgetting your best friend’s birthday.

It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.

It’s not something to describe your computer, car or phone.

According to  Merriam-Webster Dictionary  the word “retarded” means -

: slow or limited in intellectual or emotional development or academic progress

For me, it’s not just any old word – it’s my daughter.  My beautiful, bright, happy, loving, amazing daughter who is slow or limited in intellectual development and academic progress.

In our household, being retarded means something different.

It means not being able to fully care for yourself.

It means not understanding what the doctor is going to do to you.

It means not being able to explain what hurts when something hurts.

It means not being able to ride a two wheeler.  Or read.  Or ever be able to live on your own.

But ever the optimist, I also know that retarded means…

…never realizing the negativity behind the word retarded.

…never knowing the insensitivity surrounded the word’s usage.

…never realizing the ignorance of people.

…never knowing how other people view you.

Being retarded also means…

…loving unconditionally.

…finding joy in the smallest of things.

…being self-confident.

…not realizing that there are limitations.

…innocence.

One of Emma’s diagnoses is cognitively disabled.  Which means retarded.  When you call yourself retarded, you’re also calling my child stupid.  Because you use the word as just that – another form of stupid.

Let’s get something straight here.

My daughter may have cognitive issues.  She may have delays.  She may never live on her own.  Scratch that.  She will never live on her own.

But Emma* is not stupid.

In her own way, Emma is very smart.  Maybe smarter than us at times.  She has more self-confidence than anyone I know who’s called themselves “retarded”.  She is the best judge of a person’s character than anyone else I’ve ever known.

Yes, she is slow to learn things.  But she is not stupid.

I know that most people don’t use the word “retarded” maliciously.  Most people I know use it in a self-depreciating way.  And when I point it out, they go “Oh wow!  I’m sorry!” and they truly feel like a heel. But the thing is, you’re still using it in the way that people who do use it maliciously use it as – to describe stupidity.

So why not just use the word “stupid” instead?  Because I know what “retarded” is.  I live with it in the form of my daughter.  And in our world “retarded” doesn’t equate to “stupid”.

*I have replaced Maura, Phoebe’s daughter, with Emma.  Because I couldn’t have said what Phoebe has said any better.

Wow…we survived Christmas!  I hope you all had a wonderful weekend with friends or family…or both!  What are your traditions?  Our traditions got a little mixed up this year.  For the past few years I have hosted at our house.  I feel like sometimes it’s actually easier.  Both families here.  No traveling for us.  Everyone pitches in with food and cleaning up.  It’s great!  And equally, for the past few years we’ve had my brother spend the night (he’s Santa’s helper, actually) and my family would come up in the morning for breakfast.  This year I made a French Toast Casserole that you make the night before.  DELISH!  You can find the recipe here.

This year we switched things up.  We had Christmas Eve dinner at my parents after the children’s service at church.  We opened their gifts and had a great time!  The kids, however, didn’t get to bed until about 9:00.  They slept in until 8:00, though!  Then, breakfast here, with lots of fun time outside.  The weather was perfect on Christmas morning!  I’m really regretting not getting a picture of my dad riding Mason’s bike around the neighborhood.  I really dropped the ball on that one.

In the afternoon, we went to my in-laws for Christmas dinner.  Not before Emma had a meltdown.  I actually can’t remember what it was about.  I try to block those things out.  Some food helped her calm down (things can get out.of.control. when her blood sugar drops).  We headed to Grandma and Grandpa’s house, the kids played outside some more, and we ate dinner.  After dinner, more gifts.  And we came pretty close to another meltdown about her new helmet for horse back riding.  It’s difficult with her because she gets so excited about her gifts, and if the size is not right, or we have to exchange and she’s not able to play with her gift, sh!t can hit the fan.  I don’t know how to control situations like that.  What she can comprehend is limited.  And so while it looks like another temper tantrum thrown by a spoiled brat, rather it’s Emma not understanding the situation, and not being able to appropriately control her emotions (for a seven year old).  When she’s at home, she can go up to her room, remove herself from highly stimulating situations, and give herself the time she needs to calm back down.  It’s not always easy when you’re not at home.

This break hasn’t been the dream-like break I was hoping for.  It’s been pretty challenging.  And therefore I fear the wrath that summer break will bring.  Eeeek!!

I do have pictures.  And they are still on my camera. My bad.

Well, for one of my kids, anyway.  This has proven to be the challenge with 2 kids in different schools.  Their breaks are not the same.  Not even Christmas break!  I’ve put a positive spin on this…quality time with EACH kid, right? Sure!  So idyllic and perfect.  Why shouldn’t that happen?  Well,Emma started first.  Today was her first day off. We went to the gym to work out with Brandon at Premier Fitness Systems.  She likes working out with me, and it’s pretty cute to watch.  We came home, and she went right up to her room and…wait for it…got into her pajamas. Oh, and also trashed her room (I’m using the word “trashed” lightly).  It was fine.  We had a few hours to chill at home, and the girl wanted her space.  I got a bunch of chores done that had run over from Sunday when no one was home all. day. long.  Oops.

Well, 2:30 rolls around and I start talking to Emma about cleaning her room up and getting changed back into her clothes.  It’s gymnastics day, you see.  First go ’round she wouldn’t have any of it.  I tried again.  No luck.  It came to a huge melt-down on her part…and tempers all around.  Not fun.  Not how I envisioned our first day of break.  But Brett reminded me: it was her first day of break.  We broke the routine of school.  She was already thrown for a loop.  It just ended the day on more of a sour note.  I’m hoping the rest of the week runs smoothly.  Tomorrow we have plans to see Chipwrecked with her BFF from school.  Wednesday will bring us lunch with Daddy!  And Thursday will give her special time with Oma.  I’m hoping she’ll mellow out, or I’ll be wishing January 3rd to come quickly!

I’m not the only one who has this issue…I just know it!  This wasn’t the first, of course, and definitely won’t be the last.  And while it was pretty intense, it wasn’t the worst.  Can I get an “Amen”?