The Marino Family| Renton, WA| Linenko Photography

Edin, age 6, "fearless, adventurous and loving"

Imagery by the incredible Linenko Photography, beautiful words & story told by Edin's awesome Momma. 

 

 

Edin was born at home on August 28th, 2010 at 11:30. After a short 12 hours of laboring overnight, he was trying to make his entrance into this world before the midwife could arrive. You see, I was under the impression that I would be laboring for a while longer at least, and hadn't contacted my doula or midwife beyond the initial water breaking and a few updates on contractions. Well, Edin had his own agenda, and let us know it in a hurry! He managed to wait just long enough for the midwife to get in and settled, I had been actively trying not to push for twenty minutes. We were fortunate to have a birthing pool, and he was born in water caught by his dad. He is the most magnificent thing I've ever created, but his story has so much more!

The first three years were the hardest times for us, as with all new parents it was a fly by the seat of our pants experience. And it was hard, so hard it almost broke me. Edin's sensory issues were all discovered and managed on our own, trial and error in the most painful of ways. It wasn't until Edin started losing his limited vocabulary around the age of 1.5 that we suspected something more. At just under three years of age he was diagnosed by the UW Autism Center with Autism Spectrum Disorder. And with that diagnosis came the onslaught of Birth to 3 services for six months, intro to the public education system and insurance red tape plus an internets worth of information from providers, families, and people on the spectrum. It wasn't the light at the end of the tunnel, it was the beginning to a totally different avenue. 

For Edin, this was a game changer. We started speech and occupational therapy and even participated in music therapy for a short while (insurance would not cover it). We began making progress, slowly. He started at a developmental preschool with a BCBA running a great half day program for kids on IEPs and the other half of the day was with mixed group of peers. There were struggles with transitioning but he is stoic and we found ways to help him manage. He also began seeing Rosemary White up at Pediatric PT and OT. Now if we want to talk about game changer, she is the real MVP. 

With Rosemary we began to successfully engage with Edin. He would come into his appointments with her and need to do a perimeter check of the facility and toys. He would have meltdowns at any redirection and transitions from the office to the car were tear filled. We cued into his strengths in visual learning through pictures, I began a folder for our appointments with Rosemary and it spread to the other areas of our daily family life. What's great about his sessions with Rosemary is that each one is recorded, and we can look back and see how far he has come, it's easy to forget how far he has come some days. 

The summer between preschool and kindergarten Edin attended his second summer camp with Rosemary White. He was on the fast track to engaging with his peers, progressing from no interest to circling to finally diving in and engaging! How thrilling it was to see him on the playground interacting with his peers! And we felt like we had a good system in place, we had started in home ABA therapy and our schedule was pretty well full with school schedule and providers appointments. However, the school year didn't start off on a good note and spiraled down from there. 

Edin is what I've heard referred to as pre-verbal, he has words emerging but mostly relies on his pictures, home sign and caretakers to be tuned into what is going on in his world. At his preschool he had a 1:1 aide and made good progress. At the new school, that was not the case. He was bitten on the first day, pretty badly on his shoulder blade. No phone call, just a handwritten note with no details. And so began our first battle in the public education system. Edin regressed significantly, self-harming and showing us as best he can that this situation wasn't working for him. Well, a year and several thousand dollars later we have learned that you get what you pay for- and we probably won't participate in public education for our son. I can't begin to express all of the things I feel when I look back at last year, and what it did to my family. 

What I've learned from my son can not be calculated or quantified yet, but I can tell you it's priceless. The way he sees the world, that's a view I want to share with him. And it's influenced me to be a better person, more patient and understanding to others. I've learned to stand up for myself and my family, advocating and building bridges where I can. If ever there was a squeaky wheel, I became it for my family- because of Edin. I appreciate and value things that can easily be taken for granted, because there's usually hours of work put into hard fought victories. I'm spreading the love as far and wide as I can, that different is not less, that mountains can be mole hills with grit and determination. I'll keep pushing the world to see what I see when I look at my son, so much determination to make life good, nary a care what others think and so much grit he could be called sandpaper.

Spectrum Inspired.