I took the girls to a new dentist’s office a few weeks ago. I sat in the waiting room and began filling out the forms with our names, addresses, insurance information, and health history. While I was filling out Charlotte’s form, I stopped and held my pen above the word listed so innocently in alphabetical order: Autism. I was frozen with indecision. My first thought was to slide right past it . We had never been here before. I glanced up and observed Charlotte chatting away in a lively conversation with the receptionist while making good eye contact. They really would have no idea. I could walk right in to this new place with two typical kids with no shame and no secrets and no lengthy explanations. I wouldn’t be on the look out for sensory meltdowns or strange behaviors. Heck, maybe I could even sit in the waiting room during their cleanings and read a magazine like other parents do.
I stopped myself. Checking the box would only cause more questions and confusion for these medical professionals trying to learn their new clients. I could see them trying to match the myriad of symptoms that present as Autism to this social, alert child in front of them. No, it’s not a match. She is not Autistic. However, placed under the proper stressors, she is not going to respond typically. And really, with Charlotte, anything could happen. So, no, we are not typical. Knowing I couldn’t ignore the box and also protecting myself from any behaviors that may surprise us all, I established our reality with pen and paper for the first time. I checked the box. And next to it I wrote the word: Recovering.
This has not been officially diagnosed. We haven’t taken her back to Kaiser and had her re-evaluated. (we would never put her through that again) We don’t have a doctor or other medical professional that keeps tabs on Charlotte’s progress and has proclaimed that Charlotte is no longer suffering with an Autism Spectrum Disorder. On December 10, 2010, we received the diagnosis, and from that day forward we took the reigns as her primary care providers.
The pediatric dental hygienist scanned the information I had provided her, she stopped and said aloud, “Recovering. Okay. Good.” There was no bright light or interrogation of how I arrived at that status. No questions of what defines “recovery” or the semi-controversial question of how one recovers Autism. There was no mention of the word Autism at all. But also present, was the absence of fan fare or acclamation. There was general acceptance in her response, as if this is something she sees on this very form every day. And as I logically expected, Charlotte breezed through the rest of the appointment and no other questions or concerns arose.
We are stepping into this world of Recovery very slowly and carefully. It’s certainly different from the world I might have imagined back in 2010. I’m not sitting back with a glass of Chardonnay with my feet up looking over at Chad and saying, “Wow. Glad that’s over.” We’re working harder than ever. Our current project list includes improving our marriage and finances, planning for the future, and adapting to the changing needs of both of our kids.
We’re gradually giving Charlotte more independence and pulling away therapies and other supports. We’re letting her talents, interests, and relationships develop. This is a delicate and scary process. I talked to Chad last night about our last session of OT (occupational therapy) yesterday and this idea of Recovery. We shared our fears and concerns. Can we say it’s real? We are entering the mainstream world now armed only with the tools we’ve developed ourselves. Is it enough? We were protected under our label of Autism. If we step away from it, can we still use it if we need it?
Recovery is not a safe word for me. My father battled alcoholism all of my childhood and spent many years in and out of Recovery, only to take his own life with alcohol in 2009. If I I’ve learned anything from the struggles of my dad, my self, and Charlotte, it’s that the human brain is fragile. It does not exist separate from our physical bodies. We have not looked at Autism as a disorder of the brain, but rather of the body. Our path for healing began with this very simple concept. When I look at our life and our journey thus far, this spark of hope lights up the darkness and the fear that lies ahead.
Recovery will include more of what we know will work, looking at Charlotte’s overall health and letting it continue to guide our path. Her behaviors, sleep, motor control, skin tone, eye contact, language, level of connection and empathy are all clues to how she is feeling in her body. We will continue to teach her how to coordinate her movements through occupational therapy and exercise, calm her nervous system with inputs, express her thoughts and needs with friends and family, train her eyes and brain to work together, encourage her to self-regulate with nature and play, and nourish her body with real food. We will continue to observe and change and grow and push toward health–mental, physical and spiritual.
And while it’s scary to enter a world and stare down our biggest fears, we know that we have developed powerful tools for success. While the rest of the world wonders how and why Autism is affecting our kids, we will continue to pave our own path and find our own way toward health.
You have done an incredible job with both Charlotte and Dana. Both of these girls are amazing. You should be very proud.
Thanks, mom! You’re the best ❤
I was so inspired after reading about your journey to recovery! You have a beautiful family and all your love and hard work to recovery shows in the sparkling eyes that I can see in your photos.
Thank you for your comment and your support, Aunt Pam 🙂
I was going to say exactly what your mom said!!!!!!
Ha! Thank you! You have been a huge part of Charlotte’s success. I don’t know what I would have done without you in those early days 🙂
Thanks for the update Joy! Charlotte is such a bright beautiful girl. I know you have given her the tools to succeed! Love to all of you!
Thank you Rachel! Lots of love to you too ❤
I love this post, Joy. Well done! hugs!!
Hi there, I’ve just discovered your blog by fluke and this post has given me some more hope. I have a daughter who was diagnosed with autism in January of 2011, and that first year after the diagnosis was so overwhelming for us. We have her on the Specific Carbohydrate Diet for the last 2 years and we have seen such positive changes in her. I hope with God’s grace, that we too can say that we will have recovery. It’s hard work but so fulfilling when there is positive change. God bless you and your family.
Thank you for your comment, Michelle. Hope is a very powerful emotion and I am happy that this post brought you a renewed sense of hope. Best of luck on your journey!