Written by Tori McKenna
I’m Jack’s mom. There was a period of time when that phrase scared me a little bit! Jack has been an extremely challenging child from day 1. He started with neonatal seizures about 12 hours after birth – turning completely blue while in the hospital bassinet in the room with me – his dad had departed to bring his big brother back home after the big first meeting. I still cannot ask myself the question: “What would have happened if I didn’t notice? If I was sleeping?” All possibilities just a few hours after delivering our second child.
The next two months proved to be the scariest of our lives. He was in the NICU for his first seven days – no cause of the seizures was ever determined. He proceeded to have four more episodes where he fully stopped breathing before the amazing medical staff at Yale put him on preventative seizure meds which did prevent any further episodes.
After we returned home (also to a 17-month-old big brother!), my husband and I took turns sleeping – terrified that Jack might stop breathing again. It was an exhausting, stressful and heartbreaking time. I know there were moments of joy in there and I am grateful for my iPhone which reminds me that there certainly were!
From there, Jack continued to be a challenging infant, toddler and child. He was a fussy baby and, oftentimes, an unhappy toddler. He was behind all developmental milestones, never crawled, and was speech-delayed. Around age 3.5, we asked our town elementary school team to proceed with a special education evaluation and that is when we received his ASD (Autism Spectrum Disorder) and ADHD (Attention Deficit Hyper Activity) diagnosis. We also confirmed this with his pediatrician and a children’s neurologist.
I was shook by this information. I wasn’t even sure I believed it or agreed with it. But here is where our story takes an amazing turn. When we started to listen, understand, ask questions, and be supported by amazing behaviorists, teachers, paraprofessionals, and special education experts – they coached us through. They helped us understand that this isn’t a life’s curse for Jack. That so many of Jack’s characteristics, driven by his disabilities are wonderful abilities. He is caring. He is smart. He can be focused. He is learning to joke with adults and be playful and silly. I could go on for a long time about the ADHD and the ASD – it changes every day. Our challenges change every day. His ability to function at what can appear as a “socially acceptable level” changes every day, but what has stayed consistent is a constantly growing support team of friends, family, educators, and doctors who help us navigate the waters.
Lastly, through these trenches, grew creativity that I didn’t know existed. My mom and I launched a bracelet line in partnership with my dear friend who owns Pearls & Plaid clothing boutiques in Old Saybrook and Niantic, CT. Since June 2020, my mom and I have made and sold over 4,000 Callie bracelets (named after our final baby girl, Callie Pearl, born in March 2020). This has been my creative and emotional outlet (along with consistent exercise!) over the course of the past 4 years. In April 2022, we started a month-long Autism Acceptance Campaign where we raise funds through bracelet sales (close to $3,000 each April!) and donate 100% of those funds to a local camp, service, and support that has been instrumental in Jack's journey and success. My goal with that campaign is to share as much about our day-to-day with Jack - the good, the bad, and the ugly - and help the community understand autism and remove some of the stigmas that go with it.
So – that is our story. It will continue to change. It will continue to be great. It will continue to be hard. Our love for Jack will continue to grow and we will continue to need all the support that we can find to help this special little guy thrive!
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Thank you so much, Tori, for trusting us to share your story with our community.
We are honored to partner with you this month, and will continue to stand alongside you to shout the worth of our kids!