By Deanna Nemes-Fecak, TACA New York Coordinator
I recently attended a local autism group presentation conducted by our school’s in-house autism consultants. As the conversation inevitably pivoted toward a tangent, one mother started recounting how she was unable to confirm an appointment with a local mental health practitioner for six months and her child required a refill on his prescription. She was frightened because her son was running low and if patients titrate off the medication too quickly a possible side effect is tartive dyskinesia, which involves involuntary, rapid body movements. Another mother chimed in with a similar complaint, stating that her daughter is reaching an age where she is unable to control her outbursts and the mother’s only option is to take her to the local hospital for a psychiatric evaluation. The end result is they inevitably get sent home. It was evident that these parents were experiencing several barriers before getting their child to their preferred neurologist or psychologist . These children were among the many patients seeking care in one large university’s medical system, and they are falling by the wayside. As I watched these mothers, I must have looked like a slack-jawed fool as I was quite literally agape. While I was sympathetic to their plight, I also felt extremely pleased with myself for taking the “road less traveled”.
Back when my daughter was first diagnosed, we went to see a pediatric neurologist. During our initial consultation the doctor jotted some notes for me, using a notepad with a Risperdal letterhead and a pen emblazoned with Abilify. I noticed these seemingly minor details, and it wasn’t difficult to predict which direction this doctor was going to take us. The doctor told me that my daughter didn’t have autism because she made eye contact with him, disregarding the fact that she was constantly spinning in circles, collecting drink coasters from tables, a complete lack of speech, and her tiptoe style of walking. We left never to return again.
I decided to forge a different path, starting with a DAN! Doctor. Our journey has since included a naturopath, a chiropractor, a nutrition consultant, a homeopath, a homotoxicologist, a few MD’s, a DO, a holistic pediatrician, and an acupuncturist. I’ve had wonderful relationships with all of these practitioners. I have business e-mail addresses for some of them, personal e-mail addresses for others, and some have even provided me with a cell phone number. I am easily able to get into direct and quick contact with any of these professionals, and most return an e-mail or voicemail within 24 hours. Even though we are no longer considered current patients, some write me an occasional email to see how my daughter is progressing. My current holistic pediatrician speaks with our current acupuncturist on a regular basis to compare notes and share progress reports. I have worked with practitioners who are advancing their education with coursework, and they brainstorm with their professors about my daughter’s traits. These practitioners have been “all in” with me and my child, and although we paid for services it seems that it was never about the money for them. Our journey has been blessed with people that truly care and are passionate about helping us.
Along the way I have met many other parents on the same journey, and we all become fast friends. While my parent network runs deep and long, I can categorize it by location, diet, treatment intervention, educational path, health concern, those I know from the internet, those I have met, area of most experience and age or sex of their child. I know who to turn to for almost any issue that may arise, and if the person I contact first is unable to provide an answer they are always able to send me to someone who can. THIS is what empowerment looks like.
Don’t get me wrong, as I have had many days in our early years where I felt utterly helpless and alone. I remember being in my home screaming “God, please help me, what is going on with my child?”. I remember wishing I was a doctor so I would know the answers, but I have since learned that an MD behind a name does not guarantee anything when it comes to autism and my child. I remember the fear, the frustration, and the absolute agony of feeling powerless. I needed to fill my void with knowledge, so I read and researched. Me, a C+ high school biology student, decided to tackle my biggest weakness and pursue a Masters of Science in Holistic Nutrition. My preparation included a swift review of anatomy and physiology to remind me of all I had forgotten or missed in my younger days. I get through my course work at a moderate pace, but with each class I am empowered with ways to help my child and I am achieving a better understanding of what she has endured.
And so I think of these mothers from the autism presentation and their frustration, and I am sympathetic to their feelings of abandonment by medicine, a deep-rooted fear for their child and an unbreakable dependence on practitioners that are often unreachable. I am thankful that I will never know that feeling. I will never again be helpless or lack information. I expect I will always have someone to turn to in my moment of need, be it parent or practitioner. And that has made all the difference!
For parents – resources for empowerment
1) TACA Autism Journey Blueprints http://www.tacanow.org/family-resources/autism-journey-blueprints-guide/
2) What autism symptoms mean http://www.tacanow.org/family-resources/what-autism-symptoms-mean/
3) Traditional therapies overview: http://www.tacanow.org/family-resources/traditional-therapies/
4) TACA Parent mentors http://www.tacanow.org/about-taca/parent-mentor-program/
5) Does the window ever close? http://www.tacanow.org/family-resources/does-the-window-ever-close/
6) Find a TACA Chapters http://www.tacanow.org/local-chapters/ . If there isn’t one by you – check out TACA live chat for support. http://www.tacanow.org/about-taca/real-help-now-live-chat/ .
7) Beginning Medical intervention http://www.tacanow.org/family-resources/beginner-biomedical-treatment-for-autism-spectrum-disorder/
Editors note: Deanna is super mom to Rosey and volunteer coordinator for TACA New York. She is an inspiration to many families.