May, May is here and autism awareness month.. was last month, right?
For us, autism is daily. It’s been our life for 14 years.
A journey, that has had the lowest of lows and many gifts in happiness too. Lowest of lows, waking up at 7am on Sunday morning in 2009 and discovering my son, age, 6, was not in the house, no where! My husband had just deployed for a 6 month tour of Iraq. My youngest was asleep.. and Brandon was gone! It was certainly the scariest time for me! Thus began the time of many sleepless nights and long days. He was so challenging to be around, the screaming and carrying on. We rarely received a break or respite, to recharge. I began to trust the care of Brandon & his brother to therapists that were familiar with autism, simply so I could have a break from the insanity, that was our life. It was a very difficult stressful time.
We’d shudder in the house, so afraid as to the reactions or behavior of going out to the store, let alone Disney World. After years of ABA ( Applied Behavior Analysis) therapist accompanied community outings, we embarked on the ” Happiest Place on Earth”.. well, our first venture was anything but happy, resulting in my “mama meltdown”. The last straw, after days of the stares and glares toward my son and one college age gal received the brunt of it. Maybe next time, she’ll think twice of continual glances toward a child having behavioral challenges, after all we’d paid to have an enjoyable time and autism was certainly challenging us at every opportunity, it seemed! We persevered, re-adjusted our daily plans to include less stimulation and more calming activities. We did the best we could and left the door open for another possible visit.
We did return, a few years later after winning a week’s stay at Disney’s Saratoga Springs Resort. He was older, he’d worked through some struggles. We were more seasoned. We re- visited previous challenges .. and guess what- he did fantastic! Truly, a gift to know the “Happiest Place on Earth”, could be that for us too!
Autism really strained Brandon & my relationship. I felt disconnected from him. Maybe it wasn’t disconnected, I was so exhausted from the lack of sleep and having to be on high alert, all. the. time. I was simply in survival mode and trying to have some sort of normalcy for the rest of the family. My husband worked a lot. It was so hard. People would say, it will get easier, as he gets older. It was really hard to think about the future, when I was trying to get through the present. Brandon wasn’t communicating, he was being taught to use a communication device, which he still uses today, “Speak For Yourself”. We tried different therapies, like therapeutic painting, music therapy, occupational therapy & speech therapy too. We’d overcome the wandering and running. We’d see progress in some areas and regression in others. We’d read books, lots of books, went to conferences, doctor’s visits, trying to seek a solution, a cure to stop the madness! Trying to figure out how we had a child that was catergorized as severely autistic. I mean, how does that happen? We just had to stop and listen to our gut and do what seemed to be the right thing.
It’d seemed like the right people came into our lives at the right time. Knowing what we needed, even if we didn’t. Often times, we’d simply go on trust, that maybe they could help our lives be a little calmer.
Once he turned 13, it was like a switch. Behaviors changed. It was as if his brain and body had a conversation, and the result was this is who you are. Be content. Just be. This shift combined with my learnings from yoga, I planned a trip, Brandon & I. We flew to visit relatives for 2 weeks. It was a pivotal point for each of us and our family. Terrified as I was , filled with anxiety, I managed to calm and enjoy.
While on the vacation, I had an opportunity to participate in an art class. I learned of felting scarves. A new and different art form, which left me wanting to learn more. One of my classmates, had an alpaca farm. She invited my family and I to visit. I instantly fell in love with these beautiful creatures. Their personalities reminded me of Brandon. They are quiet, inquisitive and very aware of their surroundings. I returned home, feeling refreshed and energized that I’d conquered my greatest fear! I’d been told gifts would be on the opposite of the fear.
Before I knew it, I’d created an online business, “Ohana Swirls, a boy. a mom. art. their autism journey”. All in efforts to teach Brandon functional job skills utilizing products he’d made. We sell notecards of his paintings. He folds the cards and fills the envelopes and counts in sets of five. We’ve recently added birdhouses. He builds and paints each individually. Profits from his birdhouses go into his ABA therapy. Sometimes we do a Facebook Live, where you have the opportunity to watch and interact with him. He really enjoys knowing whose watching him on FaceBook. It also gives me a chance to explain and maybe help our FB friends understand autism a little more than they did before.
My beautiful alpaca & merino wool scarves are also available in our shop. I really enjoy the creative process! They also make great table runners! Something fun & different!
Just think, if I’d never taken the trip with Brandon, Ohana Swirls wouldn’t exist and I wouldn’t have had the opportunity to meet all the amazing people that have encouraged me along the way. Truly, an idea on a whim.. simply never know where life will lead.. Ohana is Hawaiian for family and Swirls is for the art, that is now and the future.
We’d love for you to visit us and follow us on our autism journey. Brandon continually amazes me and I think most times I learn a bit more from him, than he does from me! <3
Much aloha,
Julie
Ohana Swirls. a boy. a mom. art. their autism journey.
ohanaswirls@gmail.com
etsy.com/shop/ohanaswirls
facebook.com/OhanaSwirlslife.art.autism/
instagram.com/ohanaswirlslifeartautism
