Sunday, February 15, 2015

1 in 68

My beautiful, precious niece Olivia Paige, is part of the 1 in 68 children affected by Autism. That's a scary number... ONE in SIXTY-EIGHT. Add to it that this number was just increased recently from the previous number of 1 in 88. Chances are almost everyone reading this knows someone affected by Autism. Be it a family member, friend, co-worker, classmate or student...the list goes on.

 I want to tell you about my niece Olivia, who has low functioning autism, and her journey. But there are just too many stories to share. I feel like words could never do it justice or capture the true essence of it all. But this much I do know...Olivia is truly a blessing from God. You cannot be in her presence without immediately realizing just how special and miraculous she is. God has blessed her with such a unique mind with mysteries too great for our "normal" minds to always understand and too wonderful for us to know.

My Sister Calls her their “Mystery Girl”.  

"Surely I spoke of things I did not understand, things too wonderful for me to know." ~ Job 42:3  

I saw a video of my precious niece Olivia recently, in which she was swaying along to a praise and worship song and she raised her hands in praise as she sang along with every word that she had memorized by heart. Olivia is now 9 years old. In addition to Autism, she has Arthrogryposis which affects her joints and leaves her unable to walk. But man can she move when she crawls where she wants to go!

While her mind may work in such different ways than ours, I see how much she praises him for her blessings and in sheer joy.

“For you created my inmost being; 
You knit me together in my mother’s womb.  
I praise you because I am fearfully and wonderfully made; 
Your works are wonderful, I know that full well.” 
~ Psalm 139:13 - 14  

I  have been forever changed by knowing her. I have more compassion for people's own walks in life. Everyone has their own story. When I see a child or adult with special needs, my face breaks into a grin. I want to run up and hug them. Not to sure how that would go over with them or their families though, so I have managed to restrain myself. ;) She has opened my eyes to see the world that so many of us turn a blind eye to. I realized many of us turn away because we don't understand and are sometimes scared of the unknown. But if only we could all understand that the unknown is full of such beauty, love and miracles. See here's another part where words fail me. My heart and mind and soul have been affected in countless ways by Olivia. God's love shines through her. Living almost 5 hours away from her is heartbreaking to the point of tears cried over getting to see pictures and videos of her, when all I want to  do is ask her for a hug or kiss (which she doesn't dole out unless you have earned a place in her heart....and I am happy to brag that the last time I saw her I got three hugs and three kisses when telling her goodbye).

 I am in awe of Olivia's parents. An entire book could be written about the love, sacrifices and devotion they have for their girl.
I pray that my big sister gets to sleep uninterrupted for at least 6-8 hours more often. Like a lot of other children with Autism, Olivia thinks that sleeping is such a crazy concept. After all, why sleep when you could be up surfing Netflix for your favorite cartoon or squealing with delight as you play the same part of a song over and over again.  But so often, her mind gets overwhelmed by all of the stimulation and my sister’s weight lifting skills and pain tolerance gets to kick in as she helps hold Olivia through times when she wants to lash out or hurt her own self or her family in frustration and anxiety. (Oh and being the caretaker in situations like this does not require a gym comes with time and endless physical exertion.)

The month of April is dedicated to Autism Awareness. Olivia's mother (my sister) wrote about this on her blog...

"The grand gesture of setting aside a day or a month to bring the conversation of autism to the table is wonderful.  We bathe our lives in blue for a day, hoping that the general population will stop for a moment and think about, read about, ask about our journey with autism.  But, this day will come and go.  This month will come and go. And when it's over, will anything be different?  Will I have affected change in any way?  Will there be more compassion and acceptance (not just tolerance)?  Will the world feel the same urgency to solve this mystery as my heart does?  Will the world see my daughter as I do, amazing and worthy and a child of God?  
I pray, yes.  Oh, how I pray.  
What will her life be like as an adult? What happens when she is stronger than me and I can't stop her from hitting her head?  Will there be funding to provide the education she needs and deserves?  How can I help combat the ignorance and cold - hearted feelings that some people have of disabled children?  Is my faith in God's plan strong enough to withstand the dark valleys?  Am I doing all I can to let Olivia's life bring glory to Him?  Will this world ever move past Autism Awareness and instead come together to truly advocate for and help our children?  To help our girl?  So many questions.  So many fears.  So much love."
So what can I do as her Aunt Stephanie to help share and advocate for Olivia and Autism                   Awareness??? This is a question I ask myself frequently.
I have let God guide my steps. I have shared her story with people I met less than 5 minutes ago. I have shared countless posts about Autism on my Facebook page. Is it enough? It will never  feel like enough, but I trust God that every simple act we each do to raise awareness is multiplied by His love.   
My prayer today is that everyone reading this will be empowered and uplifted by the reminders that Olivia’s own joy and praise gives us (and so many others who are not just on the Autism Spectrum, but every person who is affected by special needs or disabilities). We are all miraculous works of art made in the image of God.

I pray that God will continue to guide and direct the steps of those individuals and organizations who have dedicated their lives to solve the mysteries of Autism, and support families during their journeys with Autism.

 I pray for the researchers that God will continue to help them fit the pieces of the puzzle together as they figure out new genetic links, early diagnosis techniques, and what therapy and interventions are working.

I pray for the organizations who advocate with ferocity for the families and people affected by Autism. Be it from fighting for more insurance coverage to access to therapy services, education and funding...the list is endless about the changes they are helping bring about.  

I pray for the therapists and educators who pursue their knowledge and work with passion and have fallen in love with the children whose life they touch in countless ways.

And above all I pray for the families of those affected. May God carry them in His loving arms along every single step of their journey. May their faith grow stronger with the peace and strength God bestows upon them. May they remember that they are never alone with God in their corner.

Monday, January 30, 2012

Special Needs Awareness Preschool Pack

My first preschool pack is ready!
I was inspired to create my first preschool pack by my niece Olivia. She is 7 years old and has low functioning autism and distal arthrogryposis multiplex congentia. (AMC). 
Click here to download ...

I am offering this preschool pack to help raise money for Autism Speaks in honor of Olivia, and every other precious child affected by Autism.

If you are unable to donate, please join me in praying 
for all of the precious children and families affected by Autism and other special needs.
Please pray for the incredible and mysterious journey each family faces.
May they have peace, guidance, faith, and energy to face each new challenge.
And pray for sleep for the parents who have not had a regular nights sleep in years because of the mysterious sleep patterns of their Autistic child! 

Click here to donate...

Here is a post from my sister's blog 
about their journey with Olivia...

We take a leap of faith. We decide that we will see all the doctors, read all we can, advocate for her, push her, try new things, never give up, and travel this journey together. Brian, me, Jacob, and Olivia.

I've said so many times that Olivia has taught me so much. There is so much truth to that statement that the words don't do it justice. She is an angel sent to us from God. She is meant to be my daughter. Brian's daughter. Jacob's sister. She is a miraculous mystery. And just when I start the "why's" and "what if's," I'm reminded yet again that it isn't about that at all.

It's about 

It's about the fact that I would lay down my life for that baby girl. It's about the fact that she has drawn me closer to God than I've ever been in my life. It's about how amazed we are that God has entrusted us with her precious life.

It's not easy. But, just like any other parent, we make hard decisions, unsure of the outcome. 

Faith. Hope. And Love.

We have Faith. Faith that our loving God is in control and can use Olivia for His good.

We have Hope. Hope that one day Olivia will walk and talk. Hope that our lives will continue to be blessed by her.

But, oh how true it is- the greatest of these is 

Here is a look at Autism from Olivia's Mom...

Saturday, April 02, 2011

This is our autism.

Today is World Autism Awareness Day.  The month of April is Autism Awareness Month.  And while I've been convinced for quite some time that Olivia is autistic, this is the first year we're recognizing Autism Awareness Day since her diagnosis last summer.

Our house emitted a blue glow last night.  Olivia, Jacob, and I wore blue yesterday.  Brian was decked out in blue, too, in his fire department uniform.  :)  I shared a link or two about Autism Awareness Day on Facebook.  I had a chance to talk to a tech vendor who is involved in a project at work as we looked at my new iPad.  As we explored some of the apps I had loaded, I was able to share with him some of the apps we have as communication tools for Olivia.

The grand gesture of setting aside a day or a month to bring the conversation of autism to the table is wonderful.  We bathe our lives in blue for a day, hoping that the general population will stop for a moment and think about, read about, ask about our journey with autism.  But, this day will come and go.  This month will come and go. And when it's over, will anything be different?  Will I have affected change in any way?  Will there be more compassion and acceptance (not just tolerance)?  Will the world feel the same urgency to solve this mystery as my heart does?  Will the world see my daughter as I do, amazing and worthy and a child of God?I pray, yes.  Oh, how I pray.

There are so many others on this journey who have said it so perfectly.  I know my words will fail me.  But, I believe it is important to try and share a little of what autism looks like in our family...

Olivia is watching Yo Gabba Gabba, over and over again this morning, waving her arms, clapping her hands, purposefully positioned up against the entertainment center so she can kick the cabinet doors.  This is her comfort zone.  This is our autism.

She pulls on my chin, wanting me to say something.  I search her eyes, grasping at anything that might clue me in to what she hopes I'll say.  What were we just talking about?  Does she want me to sing?  She just uttered a sound.  What is she trying to say?  She tries desperately to communicate, but only sometimes.  And when she tries, I don't want to miss the opportunity to engage with her.  So, I try to read her mind.  Quickly, before she gives up and retreats back into her world without me.  This is our autism.

She watches a favorite show.  She sings and claps and becomes completely overwhelmed by the joy of it all that she suddenly shifts into a different emotion.  It's too much for her.  She gets up on her knees, pulls her head back, and slams it onto the floor.  Over and over until we get to her to stop her.  The knot on her head has formed into bone over the years, but the head-banging can be so rare sometimes that it seems unfair to have her wear her helmet all day.  So, we try to anticipate the meltdown.  We don't watch Go, Diego, Go, because she loves the start of the theme song, but will suddenly flip out halfway through.  Every time.  The helmet is never too far away, and I swear sometimes she seems to find comfort in its confinement.  This is our autism.

Olivia is functionally nonverbal.  She very rarely communicates her needs through words or sounds or signs.  Instead, she grabs our hand or arm and pushes it in the direction of something she wants.  Or she bangs her head.  Or pinches.  Or pulls hair.  And our minds race to solve the mystery of what she needs or wants.  Sometimes we solve the mystery.  And sometimes, we end up frustrated and bleeding and begging God to tell us why we are in a place where our daughter cannot communicate with us.  But, oh how she loves to sing.  She can keep the beat to any song, and she tries to sing the words.  It may just be a syllable, or maybe even a different sound altogether, but you can weave the sounds together and realize that she is singing along.  Music is her life.  She won't sign to communicate her needs, but she's beginning to sign some of her songs.  I pray she is one day able to use those signs when the music is off.  This is our autism.

I'm pretty sure we own every single infant and toddler toy in existence.  She couldn't care less about most of them.  Instead, she is happy with a bag filled with flashcards.  She pulls one off the bottom of the stack, looks at it, and files it back in the bag on top of the stack.  Over and over.  Once in a while, she might try to name the object or letter.  The play kitchen in her playroom is never touched.  The pretend-play toys that fill her baskets are just taking up space, only appealing to her if they play music or have buttons that can be pushed over and over.  This is our autism.

Almost every single day, she wets her pants.  She will be six years old in May and she isn't toilet-trained.  There is no hope in sight of her gaining this skill.  She qualified for Medicaid as "permanently disabled" (that label is a hard one to swallow) and the CAP-C program, so we receive diapers every month on our doorstep.  Ah, that is so nice!  I think, how spoiled we are to have diapers delivered to our door!  And then I think, our five year old daughter is still peeing and pooping in a diaper, and I don't know if that will ever change.  Diapers on our doorstep is fair.  Yet, our girl can hold her pee and then flood that diaper.  We've tried so many different kinds and have yet to find one that can hold it all.  So, every day, she wears at least two outfits.  Because one will most certainly be soaked sometime during the day.  This is our autism.

I know what she means when she utters, "Oh, sah."  I know because one day she had her fingers under the movable island in the kitchen as I was moving it and the skin on her finger was sliced.  I felt so badly and just kept apologizing, "I'm sorry, I'm sorry."  Now, when she is hurt or seems upset about something, she will pull on my chin and say, "oh, sah."  Is this like a mom kissing a boo-boo to make it better?  Or does she just think those words communicate pain?  I don't know.  This is our autism.

Who will know what "oh, sah" means when we're gone?  What will her life be like as an adult?  What will we do when puberty arrives and she starts her period?  What happens when she is stronger than me and I can't stop her from hitting her head?  Will there be funding to provide the education she needs and deserves?  How can I help combat the ignorance and cold-hearted feelings that some people have of disabled children?  Is my faith in God's plan strong enough to withstand the dark valleys?  Am I doing all I can to let Olivia's life bring glory to Him?  Will this world ever move past Autism Awareness and instead come together to truly advocate for and help our children?  To help our girl?  So many questions.  So many fears.  So much love.

This is our autism.


Be sure to visit these other awesome blogs for more wonderful Preschool Packs and Printables!
Some of you have requested lesson plans for the
and I finally finished them!

You can download them here...

I have included links to other great resources and teaching ideas I have found, including a list of children's books. Here are some of the books we used. There are other great ones out there, but we were limited to the titles our local library had on hand. The first 3 were big hits with the boys. The others are geared towards kids a little bit older.

We also continue to watch our Signing Time DVDs almost every day. If you haven't read the story behind the creation of these DVDs, you can read it here.

Here is a quote from it...
While sign language is beneficial for every child, Rachel confesses a more personal goal. She says, "My hope is that everyone will know a little sign, just as most people know a little Spanish - so when your child sees my child at the park, there would be no awkwardness, no communication barrier, just three signs... "Hi ... friend ... play'... that is all it would take to change her world."

Thursday, January 26, 2012

Valentine's Day Sensory Bin

Our Valentine's Day Sensory Bin.

Inside we have...

Pink rice
colored with a few drops of red food coloring and a few drops of rubbing alcohol

We put it on paper towels to dry for a few hours

Pink Beads

Red Beads

Red Pom Poms

Glitter Hearts

Red Foil Shreds

Heart Shape Containers

Valentine's Theme Sight Words & Phrases

Little Thomas was ready to dive right in. Sensory Bins are one of his all time favortie activities and aside from cleaning up all of the rice, they are my favorite too :)

Counting Coconuts & No Time For Flashcards have cute Valentine's Sensory Tubs also. :)

Do you have a Valentine's Sensory Bin you want to share?
Post your link here...

Saturday, December 24, 2011

Our Christmas Miracle

This morning the Lord blessed my family with a Christmas miracle.

My niece, Olivia, quit breathing this morning in her father's arms. She turned blue. Her parents worst fears played out before their eyes as they called 911 and my brother in love started rescue breathing. After what must have seemed like an eternity to them my precious niece opened her eyes and began breathing on her own again. She is stable now and has been diagnosed with pneumonia and is on oxygen and IV antibiotics. This Christmas will be spent in the hospital as she is surrounded by loved ones and of course her favorite flashcards to flip through. (She has low functioning autism so if you are the child of an autistic parent then you understand ;)

This Christmas will find me on my knees singing praises to the giver of Life. He has blessed us beyond words on this Christmas Eve and our hearts will forever sing his praises. For the second time in my nieces 6 years of life, her guardian angel (aka as her father) was by her side at just the right minute to bring her back to life and restore her breathing. He is a firefighter, paramedic and hero.

Please join me in praying for a quick recovery and for her family who will spend this Christmas by her side praying their own prayers of Thanksgiving.

To God be the Glory!

Thursday, December 1, 2011

Shining Our Lights on Pinterest

I have been on a blogging break for wayyyyyy too long! 

For those of you who want to see some of the ideas we have and will be using in our 
curriculum please check out

Saturday, August 27, 2011

My First Preschool Graduate!

Captain Rex has officially graduated from Shining Our Lights Preschool and is now in K5...and I don't like it one bit! These years are flying by wayyyyyyy too quickly!

Here are some pictures from his frist day of K5.
Can you tell he got tired of having the camera follow him around?

We are still settling into our new routine but hopefully we will have the hang of it soon. We will still be working heavily on reading skills at home and I will be posting on some of our adventures in reading soon.

Tinkerbell is now 18 months old and ready for Tot School so we will be starting on that in the coming weeks! 

Wednesday, August 17, 2011

Sight Word Review Train

I found this neat idea on Crafty Homeschool for practicing sight words. It was so easy to make! I cut up strips of cardstock and used scotch tape to lay them on the middle of the tracks.

Tinkerbell LOVES her new chair. She seems to know it is hers and yells if the boys try  to sit in it. This age (17 months) is sooooo cute! 


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