Emma Jenkins - Autism Parent
Our Autism journey began like many but certainly not all that we have heard.
Miles was born a happy and healthy little guy right on time in 2014 and developed exactly how we would have expected right up until 18 months old. We couldn't explain it, it was like a switch flipped and everything he knew and could do before (and wanted to do) was lost. We were scared and of course thought we had done something wrong, but our boy changed and changed drastically!
Talking, labeling all of his body parts and toys, interactive play, eye contact, tolerance to texture, eating, engaging with us and with peers, it was all gone and we were devastated.
We adored the boy we loved and that felt lost, we were grieving but that didn't feel right because we still absolutely loved him to bits and still do! We have learned through the years that we very much did go through a loss of what was, what we knew, and started on a new path as a family that brings us closer together all the time! We had to let ourselves feel that and know now that didn't make us bad parents at all. We still have to let ourselves feel the weight of that every now and then but have such a different view of life as a family now. We are so blessed to have incredible family who have been there with us every step of the way and adore Miles!
Unfortunately we did not have a pediatrician at the time Miles regressed who was invested in our family so for a year and a half we fought for answers with no help and being first time parents with no one to guide us in the right direction, we felt completely lost. Finally we transferred over to Vanderbilt and wow did things move fast. For the first time ever our pediatrician listened to me as a mother but also just as a person going through something very real. For so long I was made to feel like it was just me and she truly validated my concerns, told me I had clearly done everything I could, cried with me, and then we got to work. Immediately we were scheduled for evaluations for speech, occupational therapy, physical therapy, hearing, eye exams, and of course Vanderbilt Autism screening.
The relief was overwhelming and at the same time the fear of hearing the diagnosis was there even though by that point I knew. The endless paperwork and testing was a lot, but we were incredibly blessed to have professionals at every step who explained who they were and what they were doing, and they were all incredible with Miles! We received the diagnosis of Autism Spectrum Disorder on 02/01/2018. We fought for those answers, it was good, it was still hard to hear.
Suddenly we were part of a new world, a bigger family, the ASD community, it was unreal! Wherever we went for treatment we were now surrounded by families who "got it," and were each there for us in some way big or small. We had never felt that kind of support and were blown away by how much it helped, how much it meant to be welcomed into a world that we fit into. When I know someone has just received their diagnosis my first response is always "welcome to the family, we're all here for you, we all get it, we all want to see you succeed and thrive!"
We have had incredible therapists - Pediatricians, ABA, ST, OT, PT, Teachers, and more, join our forever family as they fall in love with Miles and make a massive difference in our lives. We are so grateful to have the privilege to soak in as much knowledge as we can from professionals who have worked hard to help families like ours, families who have already walked through what we are struggling with, and resources to grow all the time and help those around us. We are so thankful to know that we have people we can call and cry with, pray with, laugh with, celebrate something that to some may seem small but to us is months of work accomplished!
Miles is STRONG, brave, resilient, sweet, smart, snuggly, goofy, so loving and affectionate, sensitive, gentle, intuitive, and so, SO much more and we are incredibly proud of how far he has come, how he inspires us, how he has opened our eyes to a world that is equal parts beautiful and hard and we embrace all of it. He is the best big brother to Nora, loves his family with his whole heart, works harder than anyone I know, and we can't wait to see what he does with his incredible life. Miles reminds us to soak in what we enjoy, slow down and laugh, embrace moments, stand in the water and feel the waves crash on our feet and the sand on our toes, look at objects (and life) at a different angle, to love fully and live fully, and we are honored to be his!
We will always have our battles and advocacy to push for, but we are strong enough fight them together with everything we've got, and man do we love our family!