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 membership...it 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.
Amen.

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