40-40-40 ... Day 2: Autism Speaks

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Today is my sister-in-law's birthday. She has given me 4 unique nieces and 1 charming nephew. I asked her to share with me a cause or organization she believes in, so that I could support it in honor of her birthday. Because when something is important to the people you love, it naturally becomes important to you too.

To prove my point, Kari's response was, "Autism Speaks." Why is Autism Awareness important to her, and why does this prove my point? Because her youngest niece has Autism.


This is Marlee, her mom Kelly (Kari's sister), and her two big sisters. Kelly is an elementary school counselor, whose experience with kids on the Autism Spectrum helped her recognize some of the same signs in Marlee, namely that she was behind on a lot of milestones by her second birthday, refused to make eye contact, and wouldn't respond when you called her name. After having her hearing tested, which checked out fine, Marlee then went in for an "Autism screener" during a wellness check, which showed reason for concern. Marlee was diagnosed with Autism on September 1, 2016.


On the one year anniversary of Marlee's diagnosis, Kelly wrote:
No one wants to hear something is wrong with their child but I have never looked at her diagnosis that way! This past year hasn't been easy but it's been worth it! We have had many tears and celebrations and have put in MANY hours of hard work with therapies but I wouldn't change any of it! Marlee amazes me everyday and I feel blessed to be able to continue to make this journey with her! 💙💙
I reached out to Kelly this week, who is more than happy to share her story in order to raise awareness of Autism. She shared with me that no two people on the Spectrum will be the same -- that's why it is called a "Spectrum." Someone "high functioning" will be able to experience life more independently, whereas someone with "low functioning" Autism will be more dependent on others to meet their needs.


When I asked what Autism "looks like" in her house, she said:
Marlee is now 3 1/2 and is just now starting to verbally communicate. She struggles with interacting with others especially her peers. She doesn’t like loud noise, large crowds, and doesn’t need a lot of sleep....her engine is always going!! She has been in therapy since before her diagnosis and it has been the key to her progress! She gets Speech and Occupational Therapy every week.
As if parenting isn't already exhausting enough, I can't imagine having a kid who didn't need sleep! I asked Kelly if that was "typical" of a child with Autism and she said: "Most kids I have encountered on the Spectrum don’t seem to need a lot of sleep but I don’t know if this is true for everyone."


Which led me to ask how to talk about Autism without being inadvertently offensive. Rather than saying "Marlee is Autistic," it is more appropriate to say that "Marlee has Autism" or "Marlee is on the Autism Spectrum." This shows that she is more than a diagnosis. Which she absolutely is! My sister-in-law, her "Aunt Kari", has this to say about Marlee:
Marlee has a special smile that warms my heart. As a 3-year-old, she has taught me patience on a quiet level, and that the small victories of everyday living are very important. My family and I are blessed and honored to have Marlee in our lives.
When Marlee was initially diagnosed, she rated "severe" on the Autism Spectrum. She will be reevaluated when she is 5. The more therapy and intervention available to her, the more progress she is likely to show. Which is why awareness and early testing and intervention are so important and why Autism Speaks needs our help!

Kelly says: "Don't be afraid to learn how to see the world from their perspective... become a part of their journey... they are some of the most awesome tour guides!"

ACTION STEPS:

SHARE this post and your own experience to encourage awareness
FOLLOW Autism Speaks on Facebook, Twitter, or Instagram
WEAR blue: #LightItUpBlue
LEARN more about Autism: AutismSpeaks.org
WALK for the Cause: Autism Speaks Walk
DONATE: Do you know someone on the Autism Spectrum? Donate to Autism Speaks in their honor, or donate in honor of Marlee, or simply give via credit card or PayPal: Support Autism Awareness

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