When I was told my 18-month-old daughter most likely had Autism, I was okay. I’m a very strong and driven person. I dove headfirst into research and started mapping out a path to therapies and doctors that would be needed. We acted as if she did have Autism and the therapy and testing began. Twelve months later, we got the diagnosis that not only did she in fact have Autism, but also my 12-month-old son had Autism. This is when, what I have come to call it, my moment of darkness began. It lasted 7 days. Those 7 days were filled with all of the big questions. Will they have friends? Will they find love? Will they have happy lives? And all of the small questions. Will they ever be able to get past their gag reflexes to eat a healthy diet? Will they be able to communicate even their simplest needs? Will they ever get to go to Disney?
On the 8th day, I was watching my children play together in an inflatable pool in our backyard. We had pulled a plastic slide into the pool. Layla and Indiana were sliding down and landing on top of each other, splashing and laughing until they cried. During that two-hour play session, my moment of darkness ended, and our world shifted. In that moment I saw two beautiful children who wanted what every child wants, to play, to laugh, to feel a connection and to be accepted. There was no way that in a world of over 8 billion people there wasn’t someone that would want to befriend these two fun loving creatures. Maybe they would have to wait to find them, but they would find them. Love comes in many forms and in numerous ways, they would find love.
My job as their mother never changed. I would love them unconditionally, teach them to love themselves despite their struggles, and help them find purpose. What I didn’t know was how hard it was going to be just to learn Indiana’s interests. I put a wall around my family, not brick, but solid steel, with one entrance and one exit. No one got through without being vetted by me. My children were more vulnerable than average children, more susceptible to manipulation, oblivious to danger, behaviorally challenged, and had severe sensory issues. Unfortunately, there was one place where I could not protect them, the school system. Homeschooling was not an option, as I was forced to work at home like so many others. My small income helped to keep the family from the streets, but also, I needed to be home in case Indiana had an emergency and needed to be picked up from school, which happened a lot in the younger years.
Indiana’s mental health suffered greatly in both the public and private school system. Indiana has Severe Nonverbal Autism, Full Body Dyspraxia and ADHD. Due to his inability to communicate, he was unable to tell us the physical and mental “tortures” he was suffering. When Indiana was 7 years old, after questioning what appeared to be severe regression, we found out from the School Resource Officer at his school that Indiana was in a dangerous situation in his classroom. That regression turned out to be something else. At the age of 7 my son was diagnosed with Complex-Post Traumatic Stress Disorder, a condition developed from prolonged and repeated trauma. Really let that sink in. My little boy shared a diagnosis with POWs from Vietnam who were locked underground for years and tortured. As he struggled with night terrors, triggers and a major lack of trust for everyone, he started to lash out physically and locked himself away mentally. Trying to realize his interests and bringing joy into his life was getting harder and harder. I never lost hope, but it has been a long, tough, painful journey for us both. A story for another time.
Fast forward, Indiana is now 19 years old. After finding out that his private school of 8 ½ years was not only depriving him of work skills, any real-life skills and keeping him confined to campus, had also been harboring secrets that had left my son exposed to danger. At this point I was desperate to homeschool him. You see, it turns out Indiana is an artist and loves music and one day wants to take tap dancing lessons. I don’t know this from his words, but his actions. He has been battling his dyspraxia and tactile defensiveness for years and went from only using yarn to create, to then drawing, and now painting! He tap dances upstairs on the tile in my bedroom, and he allows music to transform his mood, heart and soul, while also healing his many wounds.
And then Doug and Cynthia from Additional Needs, Inc. came into our lives through the art event, Celebration of Creation. You see ANI is working to change how the world views, includes, uplifts and strengthens the additional needs community. Starting with the Celebration of Creation where artists are not only given exposure for their creations, but also given a platform to advocate and share their passions. Last year their Featured Artists, past and present, were given the opportunity to exhibit their work for a month on the walls of a beautiful gallery in Naples, FL. It was during this event that they shared with me their brand-new program, FEEP, Family Empowerment Employment Program. Its goals are to employ families living with additional needs, the caregivers who have not been able to work to full capacity and the individual with additional needs. My mind was blown by this. Never in 20 years of living in this community had I heard of anyone acknowledging the struggles of employment for caregivers and then coming up with a solution for it!
When they first approached me and mentioned the program was for the caregiver and the adult with additional needs, I assumed they wanted Layla. Layla was the featured artist that year and had just given an amazing talk at the gallery about her paintings and what her art means to her. She is often given opportunities as her communication skills have grown so much, while Indy is usually overlooked. But for the first time, someone wanted to give an amazing opportunity to Indiana. ANI had the desire to help him grow and the belief that he could and would. So Indy and I are now the first family hired into the FEEP program!
Indy is working as an intern, honing his skills, learning new ways he can work within ANI and finding what he enjoys the most. And my job is to be Indy’s intern mentor to guide him through learning his work skills and also a media specialist. This opportunity has now made it possible for Indy to be homeschooled! He is now safe, he is learning quickly, he is thriving and he is happy! Because we no longer have to give his scholarship money to the school, I was able to buy Indiana a touch screen laptop, making it so much easier for him to complete his work, building his confidence and giving him an overwhelming feeling of pride and purpose.
This brings me to the reason that I am writing this story today. In my previous life, pre-Autism takeover, I was a photographer. I have always been a writer and owned a camera starting at the age of 10. I had huge dreams for a career in film and teaching my children to shoot photography. And I was headed in that direction when it all came to a screeching halt with two diagnoses. Now, 19 years later, I had an idea. Indiana is helping to write posts for social media for ANI, what if…what if I could use his scholarship money to get him a camera and try to teach him to shoot photos for one of ANI’s future posts? The camera is entry level and inexpensive, so I was willing to take the chance. His dyspraxia was surely going to be an issue. But I was willing to give him all the time necessary to hone this skill if he was interested. So I ordered the camera, and one morning I took him to a nursery. Indy not only loves to look at beautiful flowers, but he also loves to paint them.
Indy saw a beautiful orchid, so I showed him how to hold the camera, extend the zoom lens and reminded him of the shutter location. He immediately became overwhelmed. He couldn’t hit the shutter and keep the camera steady at the same time. But instead of becoming frustrated and impatient, Indiana started to investigate the camera and learned on his own, I had no idea, that he could actually shutter the shot from the touch screen on the back. And thus a photographer was born! His face lit up and he proceeded to photograph multiple flowers with a huge smile on his face. Watching him wander through the nursery with a Canon around his neck actively seeking to capture beauty was one of the most overwhelmingly emotional things I’ve ever experienced.
Indy and I have now been on two photo shoots together and he is currently learning to edit his photos himself. He still has a lot to learn, but he seems to be learning so much of it on his own through self-exploration of the camera and the editing program. For now, I am simply stepping back and watching my frustrated, emotionally fragile little boy, prove that he is growing into a confident, competent, intelligent, curious, hopeful, and determined young man. He has only been homeschooling for five months and not only has he taken on this new skill and hobby, but he has also fallen in love with making a variety of soaps, scrubs and candles, learned to create labels and has started a new business. The Facebook store is called Little Wonders by Indiana Phoenix and will feature his art as well as his handmade soaps and selfcare products! His products will be launching soon and he is shooting and editing the photos of all of his products for the launch himself.
I recently met a woman at one of my daughter’s art events who had a small daughter with Autism who was struggling in all areas of her life. She looked at my daughter and said that talking to Layla and seeing where she’s gotten at 20 and hearing all of the struggles she has overcome made her feel so much more hopeful for the future of her daughter. I wrote this story for anyone out there who might have a little boy, nonverbal, struggling behaviorally, hurting emotionally. Don’t ever give up hope. Think creatively, find providers who are willing to think out of the box. If people won’t give them opportunities, create them. They will catch up. Give them every opportunity that you can for them to grow and shine. They will learn in their time, they will be able to prove what they’ve learned in their time. I was told by one of Indy’s teachers that he was incapable of learning, yet he learns more every day. I’ve been told if he didn’t talk by 5, he never would. He said 6 words at his sister’s wedding when he was 18. Although it doesn’t always feel that way, anything and everything is possible, it just takes love, patience, hard work and time. Indiana has come a very long way, but the road ahead is much longer. We are ready, we are excited and we are taking the road, sometimes side by side and sometimes one in front of the other, but always together.
Guest Author – Cate Crehan
Cate Crehan is the proud mom of Indiana and Layla, and together with Indiana, they became the very first family to join Additional Needs, Inc.’s Family Empowerment Employment Program (FEEP). Through FEEP, Indiana is thriving as an intern while being homeschooled, and Cate mentors him in building skills and confidence, while also serving as a media specialist with ANI. A lifelong photographer and writer, Cate has found new ways to create alongside Indy, who has launched Little Wonders by Indiana Phoenix, a small business featuring his artwork, handmade soaps, scrubs, and candles. Cate shares their story with honesty and hope, showing what’s possible when families are given the opportunity to flourish together.
