Knox's dad and I met through a mutual friend at a bar about 8 years ago and hit it off immediately. During a very difficult time in my life, he made me laugh like no one ever had before. Over the next few years we remained friendly while I was dating someone else until the summer of 2016 when we found ourselves both single and decided to try out a 'date'. That night we sat on a dock drinking whiskey (me) and beer (him) watching the shooting stars above us and talked all night. There was an electricity in the air... and between us. The first family get together his aunt told me "he's been in love for you for years". After a whirlwind few months that included major life changes for me (buying my first house as a single woman, starting a new job), I found out I was pregnant.
Knox was born via emergency c-section on September 27th 2017... and what a day that was. The labor was extremely long and painful and when it came time to push, his heart rate started dropping. For 3 hours I pushed with everything I had…and after every push I had to roll to my side to help bring his heart rate back up. It was exhausting for all of us. When he was finally born he had a cone head and large indent in his forehead, and he was the most beautiful baby I had ever seen. The moment I laid eyes on him I knew I’d happily go through it all over again.
Knox was always a very engaged baby… lots of eye contact, smiling, sound-making, etc. We look back on his baby videos and cry sometimes for that long-lost baby. He excelled early in everything gross motor – he sat early, crawled early, and walked before he turned 1. He was climbing up and getting himself down off the couch at 9 months. It was around his first birthday that we started noticing he wasn’t communicating the way other kids his age were. His eye contact wasn't as good, he was less engaged with things and people around him, and he wasn’t asking for what he wanted (pointing, etc.). At first I wasn’t too concerned – babies grow at their own pace, right? But eventually we realized we needed help.
It was also around this time that he started getting chronic ear infections – one after another for months. His pediatrician would prescribe different antibiotics, blaming the time of year (fall/winter). We gave him 7 different prescriptions of antibiotics over a 6-month period. We were told not to bother with seeing an ENT until the spring/summer, but I finally made the appointment anyways. In April 2018 (after 2 visits) Knox was scheduled to have ear tubes placed. Post-surgery the doctor said he sucked lots of thick goop from his ears, and that to Knox everything had probably sounded like he was underwater. About 1 week later Knox was sleeping through the night for the first time—EVER!! In retrospect I wish I would've listened to my gut earlier, knowing my child was in pain for so long is something I feel really guilty about. But that’s the thing with Knox—he can’t tell me how he feels... it's a guessing game.
When Knox was 16 months old we got involved with early intervention in our state (NJ). He was evaluated and determined to need Developmental Intervention (DI) and Occupational Therapy (OT) a few times a week, which he received mostly at daycare. It was a hard situation and one in which Knox wasn’t thriving. With the overstimulation in the daycare environment, he would put up his defense mechanism and retreat into himself. His therapists had a hard time bringing him out of his shell in order to make any progress.
When Knox was 22 months old he was officially diagnosed with Autism Spectrum Disorder (ASD) and prescribed ABA (Applied Behavior Analysis), Speech therapy, Feeding therapy and additional OT through private providers (early intervention has also recently added Speech and ABA for him). Our journey has been hard, and our days are really long. Knox currently has therapy everyday… sometimes 2 or 3 sessions a day (and we’re still adding in more). I’m involved in almost every session now, and we’re learning more all the time. It’s also expensive, even with our insurance. Like really expensive. We’ve had to make sacrifices (sold our house, I quit my demanding job in advertising). It’s been tough on our relationship, and it goes as far as to affect our family and friends.
But about Knox as a person… he’s is a lover, always wanting to give and get attention. He lives for being in the water, enjoys his books, and will sit outside and watch the wind blow the leaves in the trees for hours. He's also really smart! Everyday he's learning new things and making great progress. He’s also a happy boy, and for that we are most thankful. But he does require constant supervision and direction. He's a seeker of both sensory and vestibular input. He still puts things he shouldn't in his mouth at almost 2 years old and he is always spinning, shaking his head, or doing downward dog to help regulate himself. We're figuring out what the right tools are to give to help him. We're working on the eye contact and demands... the communication and appropriate play with toys. ASD is a scale, and Knox is always moving up and down it. He regresses and progresses. Everything we do, everyday, is to help him be the best he can be. Neurodiversity is not a bad thing, and while I wouldn’t trade Knox for the world or change a thing about him, I do wish things were easier for him (and us).
