We've Moved!

We have a new home at our new website! Don't miss out any posts or updates on my book!

Come visit us!

 

Special thanks to my good friend Sarah for her expertise with the move!  Her Pretty Pretty Product Blog Design Services saved the day!

Smiling at Her Simile

Language is a weird thing. I am constantly reminded of that every day with Brielle.

Since Brielle uses sign language, I am hyper aware of the language she uses. I spend a lot of my time
 listening to her (well, watching her hands) and reminding her to use full sentences. Yep. She's lazy. It shouldn't surprise me, but it still does when she doesn't know a sign for something or doesn't know what a word means (we had a funny one the other day).

Yesterday, she used a brand new type of phrase and it nearly knocked me off my feet!

She was eating the same breakfast she does most days -- chocolate milk and

I Am Not a Mind Reader Either

I follow and read quite a few blogs, especially now that I found Bloglovin to organize and put them all in one place. Many that I follow are written by special needs moms or for special needs families. Each is different and provides interesting insights. Of course, I have my favorites.

One of them recently had an awesome post about her young daughter who uses a communication device and how the mom must remind herself not make any assumptions about what her daughter is trying to communicate. It was an excellent reminder to me as well.

I know my Brielle. I know her likes/dislikes and her life experiences. It's rare when (I think) I can't figure out what she's trying to tell me, even when she gets lazy and doesn't sign complete sentences or can't figure out how to sign certain things.

Knowing what Brielle might be trying to tell me and being a mind reader are two very different things.

By assuming I know what Brielle is signing when she doesn't use complete sentences, I am selling her short. I can't do that. Simple as that.

Thanks for the reminder, Dana!

The Same Question

People, by their very nature, are curious. They try to figure things out. I know that's why people sometimes stare at Brielle - they are trying to figure her out -- especially children.

What people might assume is that Brielle does not notice or care if they stare. They are wrong.

Once in a while, a brave soul might ask a question. No respectful question is too personal. I'm an open book, literally. After all, I'm writing a book about our lives.

So, what questions are most often asked?

Irony in a Wet Definittion

Our family loves Family Feud. We even went to a live taping of the show a month ago. BIG TIME Fun!!

As for watching the show at home, it's our ritual. Every night after dinner we all sit to watch at least part of an episode together. It's one of the few television show that we can all agree on. And seriously, what show actually encourages you to shout at it and still brings families together???

So, last night, Brian, Brielle and I are watching an episode after eating a marvelous (but not at all healthy) new recipe I cooked for stuffed chicken.

The Family Feud question was:  Name something you'd hate to find out you did in your sleep?

ANOTHER Surprise Offer from the Generous Stranger!

Back in January we had a surprise gift from a generous stranger -- Taylor Swift tickets! Read all about it!

Just minutes ago, the man called to offer us something new...

Things I Will Never Have to Deal With

Parents of special needs children miss out on a lot. Some things, we hate missing. Others, are somehow an unexpected "side benefit."

1. I will never have to

Love My Blog?

Have you heard of Bloglovin? It's a fabulous way to organize and follow all of your favorite blogs.

I'd love for you to follow me there! Just CLICK HERE!

Exciting Update!

I know... I know... It's been a while since my last post. Here's my excuse: I've been a writing maniac lately!

Last September, I finished the first draft of my book about our experiences with our special needs daughter, Brielle.

Less than a month ago, I finished the re-writes.

As of today,

Code Name: Heinie

It's the winter of 1994. Brian and I meet behind the closed door of our bedroom at 10pm each night. He holds a black Sharpie in one hand. I hold my bulging belly.

"Well?" he asks. "Which one tonight?"

Generous Surprise Gift from a Stranger: The Memorable Night

Brielle and I were sitting in the waiting area of our car dealership service department in early January when a stranger approached us. With hardly a word, he handed us

Memorable Crosses in My Life

It is difficult to go through the Easter season and not consider Jesus' experience on the cross. Although I've seen it portrayed in many movies and documentaries, it is still actually difficult to imagine.

The cross is the symbol for Christianity and the focus of Easter traditions. How many crosses have I seen in my life? Maybe thousands? A few are quite memorable.

What I Expected When I was Expecting

1994 - Pregnant with Ashley

It difficult to remember what I was thinking nearly 20 years ago when I was expecting our first child. However, visions of tiny toes, cute little onsies, and tights with lacy bottoms come to mind.

Sure, I expected sleepless nights of midnight feedings and worries over late night fevers. But, I also expected mornings with Cheerio-filled highchair trays, afternoons playing hide and seek in the park, and evenings snuggled up reading picture books carefully saved from own childhood. I expected  recitals, baseball games and gradautions. I expected pictures of first steps, first communion, prom, weddings and grandchildren.

Then I was told we might expect something very different...

Happy Anniversary "Brielle & Me"!

A year ago, I "went public" with this blog. Although I started it six weeks before, I put this blog out there for the others to read and

Friday's Photos - Catching Up!

Been a while, so lots of pictures to share!

Ashley is home for Spring Break! :)

Great timing to be home for her 19th birthday!

My girls doing homework together!

Our 23rd Anniversary!

Our wedding day!
Hard to believe this was 23 years ago!

Brielle is ready for soccer!
She's trying out this new activity on a special needs team and loves it!

Is that snow on the roof?
Cold day in Atlanta!

A warm day in Atlanta with the windows open!

Signs of spring!

Playing outside on a warm day!

Practicing her soccer skills!

Visiting our friend, Cooper, who was affected by CMV as well.
He is such a cutie and THE BEST cuddler I know!

Next to Last Pew

Most people have "a spot" in church, a favorite place they always sit. We have one, too -- the next to the last pew on the far side.

To be honest, it's a lonely place.

Why so lonely?

Being Truly Creative AND Authentic

There's been a dry spell here. I haven't posted anything new in weeks. Sure, Ashley was in town for her spring break and I was busy doing things with her, especially celebrating her birthday. Bu then.... Well.... I just felt unmotivated.

The blahs? I actually have a bigger zest for life and more energy than I've had in a while. So that can't be it.

Tapped out as a writer -- aka Writer's Block? I've been a mad woman working on re-writes lately. So that can't be it.

Laziness? I've been a total busy beaver lately working on household projects, even yard work! So that can't be it.

For a few days, I rationalized my lack of blog writing as my "unofficial spring break". Everyone needs a break, right? Blogging isn't my job. I don't "have to" do this.

Then I realized something else was nagging at me.

With the end of re-writes in sight (less than half a dozen chapters left to go), I'm realizing there's so much in my head that doesn't naturally fit onto the pages of my book. My memoir is light on opinions, heavy on story telling; light on funny anecdotes, heavy on poignant moments; light on "how to's", heavy on "what I've learned"; light on breakthrough thinking, heavy on the basics. I think that's what my memoir is "supposed to do", not that there's any rules, but that's how it has evolved.

But, what about this "extra stuff"?

Unlike putting together a bookshelf from IKEA, I don't really want to just throw the extra screws and pegs in a junk drawer or into the bottom of the tool box. I want, maybe even need to get some of this extra stuff out.

So... what's all of that mean?

Changes.

Changes here on my blog. Maybe changes with my book, too. Time to dig deep and let my creativity flow while still being authentic.

Excited for what comes next!

The "R-Word"....A Year Later

In honor of the National "R-Word" Awareness Day, I've copied the post I wrote last year.....

Retarded. It’s just a word. Right? Wrong. Words have power.

A well-known saying goes:

“Watch your thoughts, for they become words.
Watch your words, for they become actions.
Watch your actions, for they become habits.
Watch your habits, for they become character.
Watch your character, for it becomes your destiny.” by Unknown

There has been a national campaign to encourage people to stop using the “R” word. www.r-word.org/ There have been Public Service Announcements with famous actors. http://www.youtube.com/watch?v=T549VoLca_Q

I’d like to give you one more thing to think about. I’d like to share with you how the “R” word became more than just a word to our family.

I clearly remember getting the phone call at work when I was eight months pregnant with Brielle. The specialist called to give me the results from our amnio. I took notes as he told me about our unborn child. He told me she had CMV (cytomegalovirus – although I spelled it wrong the day I took notes from the specialist’s call).

The words “mental retardation” stung as he told me there was a 70% chance our baby would have it. “Still risk MR” jumps out from the notes I took. The words still sting as I read my notes 16 years later.

I clearly remember hearing the report when Brielle first received intelligence testing when she was entering school. “Mental retardation” was not on the report, but I could read between the lines of the report which told us her IQ scores were in the 70’s. My heart broke.

The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. Until President Obama signed Rosa’s Law into law in October 2010, IDEA used the term “mental retardation” instead of “intellectual disability.” Rosa’s Law changed the term to be used in future to “intellectual disability.” www.disabilityscoop.com/2010/10/11/white-house-rosa-marcellino/10610

Brielle has “mental retardation”. Rosa’s Law now terms it as “intellectual disability”, but Brielle is still the same.

If you hear someone use the “R” word or have used it yourself as a synonym for something stupid, meaningless and not useful, think again. Think about the parents who hear that word for the first time used to refer to their child. Think about me.

 

 

There is an “R” in Brielle’s name. Brielle has an intellectual disability. She is technically retarded. But, anyone who knows her knows that she is much more than that term. She is not stupid or meaningless or useless. She is a human being. She is beautiful. She is my daughter.

Wednesday's Wacky Words - Creating Her Own Words

On our way home from a Praise Team meeting at my church last Thursday night, Brielle asked me a question.

"What does 'leg' (she tapped her leg with an "L" to sign 'leg') and 'end' (she swiped one hand in a fist across the other to sign 'end') mean?"

My mind raced. Leg. End. What could she mean? Her toes? A pirate's stumpy leg?

I asked her how she knew that word. She told me something about the title of an episode of "Scooby Doo".

Then it hit me.

Leg-end = legend.

I couldn't help but to chuckle at her creative way to ask about a word she didn't know the sign for. She laughed along with me, not really knowing why we were laughing.

I explained that it meant an "old story" and then looked up the sign for "legend' in our sign language dictionary when we got home.

This isn't the first time she had been creative in her communication. But, this was one that really tickled my funny bone.

Tuesday's Tiny Triumphs - Mail Time!

We've been working on a new skill - retrieving the mail. It might not sound like much, but for Brielle, it's a stretch.

After navigating our three steps off the front porch, she has to walk up our sloping driveway. Then, after opening the mailbox and retrieving the mail....

..she has to shift the mail into her right hand to leave the left hand free to close the mailbox.

But, oh the pride in successfully retrieving the mail for us! Then it's back down the sloping driveway and up the front steps again -- all while carrying the mail.

She's also started to take mail to the mailbox! Down the steps, up the sloping driveway, shift mail to right hand while opening the mailbox...

..close the box and up goes the flag!

Now when the mail carrier drives off, she is so excited she can hardly wait to get on her shoes and go out to retrieve our mail.

Now if only she could pay those pesky bills that arrive in the daily mail, too! :)


(PS These pictures were taken BEFORE she broke her toe a couple of days ago.....)

Monday's Making a Difference - A Good Chair

Brielle's Wheelchair

Today's Making a Difference isn't a "who", it's a "what"...

When Brielle was about a year old, her therapists advised us to start working with our insurance company to get Brielle fitted for a wheelchair because she would probably never walk. She defied the odds (or at least the predictions) and began walking with a walker before her third birthday and was walking on her own in just a few months.

However, as she grew, she could no longer fit in traditional infant/child strollers. When she was about five years old, we upgraded to a medical stroller/wheelchair. Although we only use it for times/events with lots of walking, it's been a lifesaver on many occasions.

And boy, has that chair traveled around!

Sea World in San Antonio, TX
2001

Little friends can ride a long!

We used to always take it to the mall.
When Brielle was little enough, my purse could sit beside her!

At a celebrity golf tournament in Austin, TX
Look at all we can hang off the back of the chair!

With a family friend at the Toledo Zoo in Ohio
2007

At the Atlanta Zoo in Georgia
Spring 2008

At the Atlanta Aquarium in Georgia
June 2008

At Disney! (in Orlando, FL)
February 2009

In front of the White House! (in Washington, DC)
September 2010

At Clearwater Beach, FL
September 2011

At the University of Central Florida in Orlando, FL for new student orientation
Again, look at all we can pile on the back of her chair!
June 2012

Today, we actually needed it around the house. It seems as though Brielle might have broken her big toe yesterday. :(  She can't put any weight on her right foot unless she is wearing her sister's "boot" from when she broke a toe last summer. (That was the second time Ashley broke a toe -- My girls seem to be prone to this sort of thing, eh?) To make things easier around the house, we're using the wheelchair.

Today with her broken toe :(
Owie!!

The fact that she still fits in the chair after 12 years is fairly shocking, although it isn't an "ideal fit" for every day use. It looks less like a wheelchair than some models, but is sturdy and can even be loaded on to a school bus if needed. This chair folds in half and is portable even though its bulk and weight almost maxes out my ability to lift it into the back of my vehicle.

Folded up in the back of my vehicle
(see the back right in front of Brielle)

None the less, it has been extremely useful over the years and makes an incredible difference when it's needed!

Friday's Photos - Celebrations!

 

Just Mom and Brielle being silly!

Brielle and Dad headed to a school dance!

 

Brielle rockin' out her new Taylor Swift
cooking gear!

 

Making pizzas for her birthday celebration!



Opening birthday presents

Brielle with Daisy (left - her old doll)
and Angel (right - her new doll)

Thursday's Teaching Highlights - Parks

The best highlights of our teaching week:

Thank you letters!

- Handwriting: Brielle wrote thank you letters for gifts she received on her birthday. Yes, she knows her manners!

- Social Studies/History: We learned about Rosa Parks, the "mother of the Civil Rights Movement."

Scrapbook page for our trip
to the Henry Ford Museum in 2007

Ashley at the
Rosa Parks bus
at the Henry Ford Museum

We even found my scrapbook page about our visit in 2007 to the Henry Ford Museum in Detroit, MI where the bus is on display. Although Brielle says she remembers being there, I'm sure (at the time) she didn't know what that bus was all about. The whole museum is VERY interesting and well-worth the time and cost! (just in case you ever get the chance to go there!)

While working on our lesson, I realized Brielle had no idea what "black" meant let alone why there was segregation. How precious is that innocence not to see the difference?