Without a Voice

If you know me well, you have heard me say this often: we (as in ALL of us) need people in our lives and in our close-knit communities, who are different from us.  And when I write people, I mean friends.  Different is a broad category, I know.  I also know that it's natural for most of us to gravitate towards those who are like us and fear those who are not.  It's comfortable to be around people who eat what we eat, speak the same language, buy the same things, enjoy the same hobbies, etc.  But it's ultimately invigorating to be around people who challenge our thoughts, who face different challenges, who speak other languages, who come from a different background or who just see the world in a different light.  So many horrible things come from the fear of "different, but that is a blogpost for another day. Today, I am focusing on knowing and doing life with someone who has special needs, and specifically one that brings the challenge of having a voice.

My dear friend Amy, has a daughter named Erin, who is also very dear to our family.  When I first met Erin, I didn't notice anything that seemed "different" about her.  Amy had told me that she had special needs, but it took time for me to see and understand what Amy was talking about.  And at first, I worried that I might say the wrong thing or not know how to interact with Erin because Amy was the first friend I had who had a special needs child.  Erin has Apraxia.  You might not know what Apraxia is - I didn't until I became friends with Amy.   But, I think we should all know what it is.  Amy defines Apraxia of Speech (AOS) as being usually idiopathic but can be caused by a neurological impairment (infection, illness) or a neurodevelopmental disorder (secondary to Autism, Down's, etc).  You can read to learn more here.

Knowing Amy, Erin, and the rest of their family has opened my eyes to new struggles, new challenges, new perspectives and 100% new beauty.  I am learning a lot from Amy as she walks the journey of being a mama to a little girl with special needs.  Amy is a strong advocate.  She doesn't wait for things to happen.  Instead, she uses her voice, her time, her love and all of the ways God has gifted her to not only fight for her daughter, but also others who might face some of the same challenges.  She also eats Kimchi (which has nothing to do with this blogpost, but being Korean, I have to mention it to brag on my non-Korean friend).

Erin is such a blessing to our family.  Whenever we go to her house, she welcomes us with a joy, enthusiasm and warmth that lifts and lightens our hearts immediately.  God's grace is in her eyes.

Amy and Erin (photograph by Captured by Courtney Photography)

I asked Amy to tell me some of the things she wishes she could tell those of us who don't know or face Apraxia like she and her family do.  She made a list that helps to explain what Apraxia looks like, along with some of the challenges she, Erin and their family face:
  • It's a motor speech disorder.  The brain knows what it wants to say but it has trouble coordinating the speech muscles to say these words.  These kiddos understand more than they can say.
  • This is not something that will be outgrown, treatment is needed and progress can be made.  Speech will always be something they have to work on.
  • 3-5 hours of speech therapy is recommended per week - private preferred
  • Sign language and augmentative communication devices can be used to help kids communicate
  • Misconceptions - these kids are lazy, they will outgrow it, are just "late talkers"
  • These kiddos want friendships just as their peers do
  • It's not well-known so advocacy/awareness is key!!!
  • It's a guessing game for the parents, we don't know how the child feels, what their dreams are, etc. besides how they communicate without words
  • It's important for others to listen and be compassionate when interacting with a kiddo with Apraxia.  And when talking to a parent of an Apraxic kiddo don't try to diminish their concerns, ask them how they can help or inquire more about it.
  • These kiddos work so hard at doing something that comes so easily to most of us
  • Repetition is key, these kids need to hear and say a word hundreds of times before mastering it.  They may also say a word perfectly and then "lose it" shortly after. 
  • Watch this video Amy made to raise awareness about Apraxia:

This month, on September 21st, the 2nd annual Apraxia Awareness walk will take place  in Indianapolis.  Erin has her own donation page for the walk here.  Would you consider being a voice for those who struggle to have one?   In honor of the upcoming awareness walk and in honor of Erin,   I am doing a give-away for a Noonday Collection clutch that is actually no longer available anywhere else.  This clutch is completely unique and a one-of-a-kind beauty like Erin, and it's made out of recycled VHS tapes and made by special needs men and women in India. There are lots of ways to enter using the Rafflecopter link below.

a Rafflecopter giveaway