The Autism Bible
Author: Annette, Diamond, CA
When you first undergo the shock of the newest word to your vocabulary…. “Autism” you go through a roller coaster of emotions. I remember reaching out to friends and family, all of whom were as clueless as I was, but still secretly hoping they would be by my side as I started this incredible journey. Nothing was clearer than the email I sent explaining our new family dynamic and begging people not to be scared to ask me questions. I started preaching my motto, “knowledge is power…I want to empower you too”, only to hear crickets chirping each time I opened my email inbox…0 new messages.
Weeks went by and I got the occasional and polite, “How are things going? How’s Aiden doing?” I never knew what to say…. “I’m a mess! There is all of this information and I don’t know where to begin! This place called Regional Center wants to do all kinds of assessments! And I’m still trying to figure out how I’m going to get my son to all of the places they want me to go.” Instead, I kept the screaming in my head to myself, shrugged my shoulders, gave a sheepish grin, and said…“We’re doing okay.” Then, it came, over the phone. Finally, an honest and concerned question, “How long did it take you, after finding out about Aiden, to pick yourself up off the floor?” I paused for a moment and said, “Five Days.” Surprised, the caller said, “really?”
I always think about that moment over the phone and how I continue to explain to other parents, family, and friends that are left that “it wasn’t about me! It was about Aiden.” Five days was all I needed. I could have spent days, weeks, even months playing the “woe is me” card or I could get up and do something about it. During my researching weeks, I spent an obscene amount of hours surfing the internet, printing out articles, definitions, and following comment and opinion trails from newsgroups to blogs. Until finally, at 2:30 in the morning when I found TACA.
TACA had a meeting for “Newly Diagnosed Parents”…. that was me! I was so excited… 8 hours? O.K. still excited! I sat amongst other parents and listened to much needed information, advice, and definitions of new words and acronyms. Half way through, with the largest binder of information on Autism I had ever seen sitting in my lap, I thought, “this is exactly what I needed.” They should have called it the “one stop shop for Autism information” meeting.
Towards the end, I started to feel overwhelmed, scared, uncertain, and a wee bit embarrassed. Mostly because when other parents were speaking, they spoke as if they had been at this for months already…asking questions like, “We already have 10 hours a month of ABA therapy. How do we get Regional Center to pay for more?” I sat in my chair thinking, “I’ve heard of ABA therapy, but how did you already get 10 hours of it?” My body walked itself to the car since my brain had taken a mini vacation to “Autism Land.” I sat in my car and began to sob. Thank God for tinted windows!
I had no idea where to begin. I was on information overload, but still full of disappointment thinking and believing I was behind. I remember Lisa Ackerman saying, “this journey you’re on is a marathon not a sprint”. I left the building inspired by Lisa’s words and motivation but scared at the same time and thinking, “She certainly is dynamic.” Words like Regional Center, Bio-medical, GFCF, IEP, ABA, and OT…it encircled my mind…the list, like a broken record, just playing over and over and over in my head. How will I pay for this? Who should I call first? I could see my “To Do” list get longer and longer by the second. I clenched my fists over my eyes and rested my elbows on the steering wheel of my car. I looked down at the passenger seat and saw the TACA binder laying there. In big bold letters on the front it said, “Parent Information Binder.” It was all in the thinking…right?
“I can do this,” I whispered! “It’s like taking a class. These pages are separated by subject matter. No more links, clicking webpage after webpage. From now on, the internet will be a tool to help support my reading through this binder,” I justified out loud to myself. So I did it. That was 6 months ago. My Regional Center caseworker has come to know me really well. The TACA binder for newly diagnosed parents, which I have come to know fondly as my “Autism Bible,” kick started my journey to my then 2-year-old son reaping the benefits of:
|•||Occupational Therapy||•||Speech and Language Therapy|
|•||ABA Therapy||•||An Infant Development Center Based Program, specifically for Autistic children|
|•||Peer Structured Play||•||Bio-Medical Treatment with a DAN doctor|
|•||A Gluten and Casein Free Diet||•||The Autism Society Of America Conference|
|•||An Advocate||•||A Special Education Attorney|
|•||A TACA Mentor||•||An Autism Support Group|
|•||An entire therapy room dedicated to his learning and therapy||•||SSI benefits from the state|
|•||A Trust Fund with Non-Profit Status||•||Strategic Estate Planning|
|•||A Jewish Free Loan||•||A Walk-A-Thon Fundraiser|
And most of all, it has benefited a mother who has the confidence, tenacity, and emotional stability to look at each new moment with informative and challenging eyes. TACA has helped our family by giving us the tools to deal with the scary road ahead, but mostly TACA has helped our family by empowering me to do what I needed to do. To know how to do it, where to look, who to call, when to move on, and to continuously remind me why I am doing it.
TACA has been a part of re-creating our family. In six months, with a family income of less than $1200 a month, those services and all the information packed away in my Autism Bible, has allowed my soon to be 3 year old mild to moderate Autistic son become age appropriate in receptive language, socialization, and emotion. He now has a 4-6 month delay only, instead of a year to 1 ½, in every other diagnosing category across the board. With bio-medical intervention and a GFCF diet, my son’s gut is healing and went from NO language to over 250 words today. My son’s 3-year transition to the district is a scary one. He will most likely be mainstreamed into a regular pre-school class with some support and I will have to let go of some of the things I have held onto so tightly for so long. If my son does continue to reach each of these milestones with gold stars across the board, it will be TACA who helped rescue me, cure his body, save his life, and improve our family.
We are forever indebted….Thank You TACA!