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A Spectrum Inspired Story

I am a local Spectrum-Inspired photographer, meaning I am a part of a group of photographers that offer sessions for families living on the spectrum to raise awareness and education about autism. Please go check them out and the incredible work they are doing worldwide!

But before I get into this beautiful story, I wanted to let you know that I’ve got a special surprise at the end of this post!  I’m taking part in a blog circle with some photographer friends of mine.  We’re linking to each other’s posts, so you can check out what they’re up to.

But, for now, let’s get into this beautiful family story!

I already knew this mama as she is an OB/GYN here in Las Vegas, and in my role as a labor and delivery nurse, I have had the pleasure of working alongside her. Tracy is an incredibly intelligent, kind, compassionate, and talented physician who is well-respected in our community.

A year ago, I had completed a family film for another client I work with, and as Tracy watched it she cried and said she wanted something just like it. She shared that she had never had family portraits officially taken as they just weren’t sure how that would look or unfold with Thomas, and was ready to take the step in having them done. I then shared with her about Spectrum Inspired and their amazing work; she was totally on board! Tracy is so active in the autism community and so passionate about spreading awareness, so the opportunity was perfect!

After submitting an application, we were paired at her request and got to work scheduling her session, where we also added the option of a family film! I am passionate about family films as they show more than a photograph alone can!

You can find their family film here, and be sure to read on to hear their story and see the still portraits we captured during their session.

I have been hanging on to this story for a bit as I wanted to post in April during Autism Awareness month. There are so many powerful, encouraging, and inspiring stories to share. I hope that out of them comes education and awareness as to what the many faces of autism look like and how it is lived out in each family!

Thomas is eight years old, and his diagnosis is- Autism Spectrum Disorder and apraxia.

Thomas was born prematurely due to complications, but his first year progressed well, with Thomas meeting milestones, including walking and interacting with others. By the one-year mark, Tracy began noticing that his words were rare and that he failed to respond to his name being called. As most parents would, she assumed he was just mildly delayed. As the months passed, she began realizing he never reached out to be picked up, and his 20-word vocabulary quickly disappeared. At 18 months, her concerns were addressed with her pediatrician, who agreed with the red flags she had observed and sent them to a developmental pediatrician, where his diagnosis was received. It was an emotionally shattering experience for this family, not because they were afraid of Thomas being “different” but because of the struggles, they knew he would face. It meant he could not share how he was feeling with his family or express his fears or excitement with them.

After their diagnosis, they learned everything they could about autism and apraxia (meaning difficulty in speaking sounds, syllables, and words). Thomas’ biological father, who had been a part of Tracy’s life since high school, became uninvolved and was no longer willing to be in Thomas’ life. Thankfully, his grandparents and her family rallied around her and became a source of strength and support valuable in navigating their struggles as a single-parent family and an OB/GYN resident.

When Thomas was four years old, Tracy met her husband, Justin. Tracy says that the incredible bond between Justin and Thomas began the first time they met and that there was a connection between them right away. This does not come easily for Thomas, as he does not engage or interact with others until he feels comfortable and safe. Justin has become Thomas’ biggest fan and spends every day at therapy with him. Justin adopted Thomas as his son. He doesn’t see Thomas as autistic but as his son, whom he adores and supports. This was so very evident during their session.

When Thomas reached the 5-year mark, his family was told that being non-verbal at his age meant his likelihood of speaking was slim. But they didn’t give up and continued with PT, OT, and speech therapies.

They were completely blown away when Thomas finally spoke his first words a year and a half ago, “I want eggs.” His vocabulary has grown through lots of hard work and gradually over time. He is now able to express himself better with words and small phrases. It has opened up so much for Thomas and his family.

Thomas does not like loud noises and wears his headphones if overstimulated. He also does not enjoy large crowds unless it is people that he knows and trusts.

Photographing and filming their session in a documentary approach was perfect for this family. I was able to come in with no time constraints and focus on being in an environment where Thomas feels safe and secure and where their day-to-day life unfolds. Home is really where your memories are made, after all!

By watching and observing, my goal was to show not just their struggles but also their victories, the ability to overcome obstacles, and the love this family shares with each other.

Through lots of communication and their application with Spectrum Inspired, we could settle on what moments we wanted to capture in sharing their story.

Thomas loves dinosaurs, sharks, Disney movies and characters, and his iPad. It was so great to observe him just being himself! He constantly had his characters and his iPad with him, arranging his characters just so and interacting with his mom, dad, and sister. He is silly and engaged with things that he loves.

Thomas also loves water and the motions of jumping and spinning. Spinning in circles was one of the earliest signs that Tracy noticed with Thomas.

They have a small trampoline he often jumps on to relax and decompress. As soon as they moved to their beautiful home with a large space in the backyard, one of their first additions was a large trampoline for Thomas to jump on.

Little Natalie was also born prematurely, but over a year and a half, she shows no signs of delays or autism.

As we sat and talked during Natalie’s nap and while Thomas had lunch, we talked about difficult textures and sounds for Thomas. Many times children with autism have difficulties with textures in foods and clothing, which limits things they like and can tolerate.

Things like haircuts can be traumatic for children with autism, and she had expressed their challenges with navigating this with Thomas. His haircuts are done by his aunt, whom he trusts, and there is a whole process to it; as the conversation unfolded, we decided it would be perfect for documenting this aspect of his life as well, as he needed a haircut. So with a phone call to his aunt, we arranged it spontaneously, and I am so happy she could come over and was willing to document it! Keeping him still, occupied, and with just the right amount of distraction was a process you could tell had taken lots of time to fine-tune.

We wanted to end our day by capturing family portraits, so as the afternoon set in, we all headed to a beautiful park in their community and let the kids play a bit, and then gathered everyone together for portraits. By this point in our day, I was pretty blown away and so moved by them all.

Their love for each other was evident in everything they did and naturally. I am so grateful that they were willing to trust me in their home and tell their story. I am grateful I saw Thomas’ warm and gentle nature and can’t wait to see what lies in store for him and his family as they continue to navigate life on the Spectrum. I do not doubt that he will continue to grow and learn through the support and love he receives from his family.

As we head into April and autism awareness month, be on the lookout for stories like Thomas’, and into learning about and volunteering for organizations that help spread education and awareness on autism and the many facets and faces of those that live on the wide spectrum.

There are so many incredible stories to be told and so much to be done in educating our communities about autism and life on the spectrum.

Thank you so much to the Wurm-Donofrio family for being willing to share your story with us all!

If you are interested in documenting your story or applying to be a Spectrum Inspired photographer, check out the Spectrum Inspired community and apply!

Now be sure to follow our beautiful blog link to check out the incredible work of a group of 5 very different photographers and the varied stories we have to tell!

Landon’s Story

To comfortall who mourn, To sonsole those who mourn in Zion,

To give them beauty for ashes, the oil of joy for mourning, the garment of praise for the spirit of heaviness;

That they may be called trees of righteousness, the planting of the Lord, that He may be glorified.

Isaiah 61:3 NKJV

I am continually blown away and amazed by the people God has put in my path throughout my life. I have been blessed to walk alongside and rub shoulders with some powerful and resilient people in my lifetime. You know these types of people, the ones that leave a mark on people that surround them often without even knowing it. These people inspire me to be better, live life with more intention and passion, and live in the here and now. 

The Ewells are one of those families. I met them in October 2016 when I was their labor nurse for the birth of their third child Landon. I had just come out of a delivery when I received my next assignment. As I learned their prognosis and what they were facing as they came in to deliver Landon, I can honestly say that my heart sank. I quietly tucked myself in the supply room and prayed. My heart just ached for them and what I knew they would be facing, and I just wanted to have the right words, to provide the best care for them, and to have the strength to hold it together through their delivery.

Who would have known then what would unfold through Landon’s story? Well, I know that God did. I know He has a plan for everything, and I believe he does not place heartbreak and pain in our lives, but He will always carry us through. He is always there and knows where it will lead us. This beautiful family has become an important part of my life. I have been blessed to have stayed connected to them outside the hospital and seen them walk through the darkest of life’s valleys. It has not always been beautiful, incredibly raw, and painful for much of the time.

From the moment I met Landon, I wanted to tell his story. I wanted the world to know him and his impact on me and the world around him. I knew that their story would inspire others just as it did me. During a recent film-making workshop, our project-long assignment was to choose a cause or something we cared deeply about and tell its story.  Immediately, I knew this would be the perfect opportunity to tell this family’s story. I prayed that they were ready to share their lives with the world. I am so glad that they were.

I hope that their story inspires you as much as it did me.