WORLD AUTISM AWARENESS DAY
In 2014, the CDC reported that 1 in 68 children are diagnosed with Autism.
More than 3.5 million Americans live with an autism spectrum disorder. (Buescher et al., 2014)
The U.S. cost of autism over the lifespan is about $2.4 million for a person with an intellectual disability, or $1.4 million for a person without intellectual disability. (Buescher et al., 2014)
“Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings.”
“62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering.”
Our middle daughter, Harper, was diagnosed with moderate to severe Autism at The Cleveland Clinic in 2011. Today, she is a thriving Kindergartner who socializes beautifully. When we started our journey, she wasn’t talking and when she did eventually talk – most people could not understand her. She had developmental delays when it came to holding her head up, sitting up, and more. We even did some testing for Cerebral Palsy. Those tests led her to the diagnosis of Hydrocephalous at 8 months old As we moved into her second year of life: She choked on her food daily and hated going to busy places. She would bite herself and slam herself into the wall when she couldn’t find her words. She would bang her head against the wall at night when she couldn’t sleep. The shrilling screams she would let out still haunt me. She would dart into the road if I looked away for even a moment. Wandering was a huge concern for Harper. She would run mysterious fevers and had severe gastro symptoms we eventually got control of with diet. Her pediatrician referred us to a team of doctors for a formal evaluation after seeing her meltdowns more than one in his office in conjunction with her developmental delays.
Also, we were alone. We lived in six hours away from our family and I was pregnant with our third.
That’s why I share our story.
That’s why I reach out to other mothers who are newly diagnosed because I know what it feels like to be drowning in a new diagnosis, therapies, meltdowns and isolation. There’s quite literally a process all families experience post diagnosis. I wouldn’t call it mourning but there is a shift… there’s a process between sadness, empowerment, fear, anger and confusion. A lot of time parents can’t talk about that process because well.. they’re too busy juggling therapies and making sure life goes on.
On a positive note: Harper is doing fantastic and with a ton of consistency she has conquered a lot of what I just listed for you. Currently: Her biggest challenges are at home – sensory wise – but she’s SHARP when it comes to being social. She still has to think longer to get her words out under pressure but she understands and thats whats important. Recently, we’ve had some concerns about her sleep and the possibility of narcoleptic seizures and bed-wetting but that is most certainly yet to be determined. It’s just another leg in her journey.
Harper loves animals and has a gift for art. She can color for hours and I love every single picture she brings to me. She’s so proud of them.
We are proud of her.
Our oldest daughter, Haydn, has a receptive/expressive language delay mixed with some social processing challenges and sensory issues. We’ve seen some anxiety surface as of lately too. She does not have an Autism diagnosis but her circumstances have grown to be quite complex. She struggles to navigate conflict with her peers and has been bullied. We are currently helping her to navigate this part of her journey. In fact, this month – she will evaluated for OT and Pragmatic Speech delays, privately and in an education setting.
Haydn loves History and learning about influential people. Barack Obama, Albert Einstein, Abraham Lincoln, Amelia Earhart, and Jackie Robinson just to name a few. She can remember facts like no ones business. She loves her skateboard, getting active, and putting smiles on the faces of her friends.
Finally, and IF you even made it through all that… haha!
This is truly only a top layer to our experience with Autism and Processing Disorders but it is a part of our everyday life. The girls are happy and kind and aren’t hurting for much – they have a mother who has some social/ocd issues of her own. Navigating our journey has been a life learning experience. If you have friends and family affected by Autism – be a sport and learn as much as you can. Get to know their situation because trust me when I say this: Every child on the spectrum is DIFFERENT… no two are exactly alike. It’s not defined by a simple blood test or brain scan. Treatment can range from Psychiatric, ABA, Speech, Occupational, Feeding, Hippo, Play, Social, Behavioral and the list goes on and on. Seriously. Those therapies are in addition to many potential underlying health concerns that can extensively affect a persons ability to cope with ASD as well.
If I could sum up Autism with one word it would be COMPLEX.
“Spectrum” would run close second.
Perhaps that is why so many people don’t understand it until they are forced to live with it. It’s something you have to experience to truly understand. Unfortunately, I’m afraid that I’ll have to see many more families experience it before the impending importance of it’s commonality is truly felt by humanity as a whole.
My Movie 1 from Jamie Scott on Vimeo.
Today was “dress like your favorite book character day.” A family favorite of ours is The Magic School Bus, of course! We pulled together some items from home and hit up the fabric store for the dress and pant embellishments. As Mrs. Frizzle would say, “TAKE CHANCES, MAKE MISTAKES, AND GET MESSY!”
Welcome to a new series: Eleven Minutes. I’ll be sharing little glimpses into our life in eleven minute glimpses. Enjoy.
I shot this series for my monthly contribution over at Beyond The Wanderlust but had to share it on my blog too. I’m so excited to share it with you here today. We ran out one morning to to catch Venus and Jupiter in the sky. If you’re reading this – there’s a good chance youContinue Reading