I recently came across an organization called Spectrum Inspired, which began with a couple photographers who had a dream of connecting families living with autism to professional photographers who focus on capturing the true essence of a child … documenting life as it is right here, right now … and showing other’s that their story is beautiful, and worth being told. Meant to be? I thought so. After reading more about what they do/who they are, I felt inspired to share a bit of our story …
Meet my youngest little, The Bug.
She has High Functioning Autism (HFA), though it’s also been referred to High Functioning ASD. Most don’t know it, that is … unless I say something. Responses have typically been, “Noooo, she looks so normal?! I never would’ve guessed!” … “Oh, I’m so sorry to hear that.” I’ve gotten eye rolls too … as in, “Sure she she does … and I’ve been on the moon.” Sometimes though, I’ll hear … “Wow, you’re so strong.” “She’s lucky to have you in her corner.” Mostly, though, it’s disbelief … how can a girl who looks like THAT have autism?
I HATE (super strong word I don’t use often, but definitely the right one here) the word “normal.” Who is normal? No one I know, that’s for sure. Let’s reserve that word for blood counts and labs, eh?
When The Bug was a wee babe, I always had this question lurking in the back of my mind … “What if she’s autistic?” Call it intuition … I always wondered. She met some developmental milestones a tad bit late … no biggie, truly … she was fussy a lot, with no cause that I could find … she’d only sleep on my chest or swinging or in motion … that was stressful … and when she didn’t talk, I knew something had to be up.
I had to fight to even get her evaluated. She’s a late bloomer, they said. She’ll talk when she’s ready, they said. She looks and acts … “NORMAL” … again with that awful word. I knew better. I made the judgement call when she was 1 year old. I asked for help. I fought for it. I got it.
We used ASL for her first few years, as she had only two words … mama, ball. It took a good few months before we were seen … before they listened and took me seriously. I was the ONLY person in her WHOLE world who understood her wants and needs.
We sat in a room full of people … a nurse, doctor, behavioral therapist, speech pathologist, occupational therapist … the list goes on. It was intimidating … I immediately started sweating … and stuttering … I get nervous in big groups. I watched as they played with her and observed her play on her own. They chatted with me about my concerns and took a family history. They observed us together, and in the end … told me they had no clue what was “wrong” … if anything. “I don’t believe you … something is off here …” I remember thinking to myself. They concluded that she had an expressive speech delay/disorder, and the SLP recommended we begin speech therapy immediately … she was 1 year 4 months. She continued speech therapy until the end of 3rd grade (she’s 1 month shy of ten now). 7 speech therapists later, one could never guess she’d ever been in speech therapy. <3
Speech therapy involved more than just a speech therapist there … she went twice a week to a center where they’d work on communication and social interaction in a group setting, as well as one-on-one, group, and family speech therapy sessions. Signing was encouraged a well. Her speech therapist was baffled, mostly because she responded so well to everything she was teaching her and doing with her. She was always just above the cut on every test she did with her. Apraxia of Speech? She told us it was a mild case of one … maybe … she really couldn’t give a definitive answer, but treated it as such.
One day, not too long after we started therapy, this Disney-eyed creature looked up at me and pulled a chunk of hair from her head … and laughed hysterically. Then I thought about her biting issue with The Byrd. And then there was that time she fell off a step stool and hit her head … she never cried. Certain sounds and smells overwhelmed her. She would only eat a short list of foods. I asked about it at the center …. more tests. She has all the signs of a Sensory Processing Disorder, they said. She needs more of certain physical sensory input (and less of others) to function like we do, and the sounds/smells things you’ll learn over time … record them… read these books, try these things … we’ll work with her here too. So I did, we did. We got a chewy and that stopped the biting. We started gymnastics and dance, and spent even more time that usual at the park, often swinging … ooooh, how she loved to swing. We even bought a swing to put up in the doorway at home, and she learned to go to it when she needed to. We tried a massage every night before bed. We stepped back on forcing new foods … because … textures and smells. We are still working on that one. We got a weighted blanket to help her sleep better. We learned more and more coping mechanisms … we’re still learning coping mechanisms, as it’s a never ending thing … her sensory diet is always changing, even at age 9.5.
Between ages 5 and 6, she started showing signs of serious anxiety. She began clinging to me, more and more often. She wouldn’t sleep alone. Unfamiliar places and people … the wrong cheese on her grilled cheese … a “broken” sandwich … a sudden change in plans … I couldn’t predict how she would respond. We were getting ready to move cross country too, which didn’t help matters.
When we got settled in Iowa, that little voice in my head told me that something still seemed off. Social issues and her anxiety were worsening … it was hard for her to navigate friendship making. Due to her speech delay, learning to read had become a challenge, and with homeschooling … we’d hit a brick wall. I couldn’t figure out how to help her. We were stressing each other out. She was finding it difficult to express her feelings and thoughts properly … a change in plans sent her through the roof … it was hard for her to find the right words, and often times chose the wrong words and would get upset with herself for it. She would bottle things up until the bottle lost it’s top. We were alone too … we were struggling … and I began to realize that this went much deeper. What if??
I got a referral from our 1st pediatrician here, to see a counselor, and after several meetings … we got a laundry list … General Anxiety Disorder. Pervasive Development Disorder. Speech Delay. Sensory Integration Disorder. Opposition Defiant Disorder. Then the counselor looked at me, and said … “You know, if you look at each of these alone, they can stand alone. BUT, if you take a step back and look at them as a whole, you daughter is on the Spectrum. She has High Functioning Autism, one of many diagnoses on the wide range that is known as Autism Spectrum Disorder.”
THAT. Right there. Has made all the difference in our world. It brought me peace … of mind. For the longest time I thought I was losing my mind. It had been mentioned that I babied her … made excuses for her behavior … that it was all in my head … and these are just behaviors she’ll outgrow, because … look at her … she looks “NORMAL.” I let out a huge “Praise Jesus!” right there in the counselor’s office. I smiled, and even laughed a little … right there I looped back through the last 6 years of our lives and guess what? It. All. Made. Sense. Now. At that point, after all those years of wondering … I had an answer. It didn’t phase me one bit … just knowing gave me peace, and that was that. NEXT!
My daughter has High Functioning Autism (which is merely one part of a very wide Spectrum), but it isn’t WHO she is. It’s NOT a label. There is NO one-size-fits-all. It looks like nothing. It looks like everything. It is NOT condition. It’s merely a way of seeing and feeling the world … and I think it is part of what makes her so freaking AWESOME. She has shown me a different way to look at … see … and feel the world, and it’s incredible.
She works harder than most kids I’ve ever met, and plays just as hard. She is sharp as a tack, quick to love, and is capable of more empathy than any child I’ve ever known. She’s creative and clever, thoughtful and kind, effortlessly comical, and full of love for humankind, nature, and animals alike.
She has a gift for the arts … something I’ve begun to nurture more and more in the last two years. I’m sure we’ve used up a a few trees in the name of art, but her smile when showing me her latest drawing or painting makes it worth it (and we plant more trees, of course). Her emotions are expressed through dance and drawings, more often than words. She’s a sunset chaser, like her mum, and reminds me daily to stop what I’m doing to go watch with her … it brings her peace. Sometimes she paints/draws it, other times we take a photo … and in the summer, we chase the light so she can dance in that last bit of light whilst I document the moments shared. She is strong … brave … and beautiful, inside and out … and I grow prouder of her with each passing day.
Moving forward …
So, the other day when a friend asked for photographers who advocate for autism to message her, I did. She told me about Spectrum Inspired’s mission … to connect families living with autism to photographers who have a passion for documenting life and capturing a child’s true spirit through photography. I applied, of course … and I am STOKED to announce that I will be working with them to provide sessions to families living with autism here in the Des Moines / Ankeny Iowa area!
My own little Bug has inspired me to create photographs in a way I’d never dreamed of. She’s the reason I bought my first SLR … my muse … my inspiration to dig deeper and focus on capturing authenticity and beauty in our everyday lives and the world around us. Everyone has a story to tell … and it’s worth telling. <3
Things at Spectrum Inspired are still in the getting-going phase, but if you’d like to learn more about Spectrum Inspired, feel free to check them out on their website and/or follow them on Facebook or Instagram.
If your family is located in central Iowa and you’re interested in a Spectrum Inspired session, please contact me right away! I truly would love nothing more than to do that for YOUR family … to tell YOUR story … to show YOU that you’re BEAUTIFUL. STRONG. WONDERFUL. AMAZING.
If you’d like to donate to the scholarship fund that Spectrum Inspired has set up to help fund sessions for children with autism, you may do so here: https://www.gofundme.com/7yx9c5tw
UPDATE: The ever-so-incredibly-amazing Sarah Cornish of My Four Hens Photography has graciously donated her ENTIRE ACTION PACK (A $500 value) to help bring awareness to this incredible cause and money to fund sessions for children with autism — you can find all the details here on Spectrum Inspired’s Facebook page. The giveaway winner will be announced on Sunday night — soooo, don’t wait! Get over there now and enter for your chance to win! 🙂
Cheers!
Jaime
