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

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’s 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, and is so well respected in our community.

A year ago I had completed a family film for another client that I work with, and as Tracy watched it she literally 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 the amazing work they are doing, and 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 we got to work scheduling her session where we also added the option of a family film! I am so passionate about family films as I feel like 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 just a bit as I really wanted to post in April during Autism Awareness month. There are so many powerful, encouraging, and insipring stories to share and 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 individual family!

 

Thomas is 8 years old and his diagnosis is- Autism Spectrum Disorder, 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 really began noticing that his words were rare and that he failed to respond to his name being called. She assumed as most parents would that he was just mildly delayed. As the months passed, she began realizing he never reached out to be picked up, and is 20 word vocabulary was quickly disappearing. 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 would not being able to share how he was feeling with his family, or express his fears or excitement with them.

After their diagnosis, they went on to learn 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 so valuable in navigating the struggles they faced as a single parent family and an OB/GYN resident.

When Thomas was 4 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 the two right away. This is not something that comes easily for Thomas as he does not really engage or interact with others until he feels comfortable and safe. Justin has gone on to be Thomas’ biggest fan and spends every day at therapy with him. Justin adopted Thomas as his own son. He doesn’t see Thomas as autistic, but rather as his son that he adores and supports. This was so very evident during their session.

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

They were all completely blown away when a year and a half ago Thomas finally spoke his first words, “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 he is 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 just 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 really show not just their struggles, but also their victories, the ability to overcome obstacles, and the love that this family shares with each other.

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

Thomas loves dinosaurs, sharks, Disney movies and characters, and his iPad. It was so great to just 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 really 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 that he often jumps on as a way 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 at over a year a half shows no signs of delays or autism.

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

Things like haircuts can be traumatic for children with autism and she had expressed the challenges that they faced 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 to document this aspect of his life as well as he was in need of a haircut. So with a phone call to his aunt we arranged it spontaneously and I am so happy she was able to 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 really wanted to end our day with capturing family portraits and 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 so evident in every single thing they did, and so natural. I am so grateful that they were willing to trust me in their home and in telling their story. I am grateful I was able to see 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 have no doubt that through the support and love he receives from his family he will continue to grow and learn.

As we head into April and autism awareness month, be on the look out 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 in applying to be a Spectrum Inspired photographer, be sure to check out the Spectrum Inspired community and apply!

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

You can find Michele Quattrin an incredible talented Minneapolis Film Photographer and the the beautiful way she documented her family’s spring break vacation in Florida.

SHARE

Comments

  1. Annika

    April 3rd, 2019 at 1:23 pm

    What a moving story! And so beautifully captured!

  2. Michele

    April 4th, 2019 at 7:08 pm

    These are fabulous! I did a session for SI too I should probably post about it this month!

  3. KC

    April 4th, 2019 at 7:30 pm

    What an incredible story! Brought tears to my eyes. My son had a speech delay and apraxia diagnosis when he was 2 and can imagine the joy this family felt when their son asked for eggs! Thank you for your part in building ASD awareness!

Leave a Reply

Your email address will not be published. Required fields are marked *

SUBSCRIBE

to my newsletter

* indicates required

Sign up with your email address to receive news and updates.