I remember my first autism conference circa June 2000. There were over 2,000 people in attendance, all looking for answers to help their child living with autism.
It feels like it was just yesterday we went to this conference. I came equipped with pens and notepads, ready to absorb all I could to help Jeff. His health was poor and his once varied diet now consisted ONLY of tiger milk bars, Burger King chicken nuggets, French fries, peanut butter and jelly sandwiches and milk.
Since the diagnosis life changed. This conference claimed to offer answers and I was there to get them. I was so eager to learn I could barely stay in my seat.
My husband, Glen and I attended the conference together. Our strategy was divide and conquer. Split up and get as much information as possible. Meet and compare notes. Run to the next session. When we went to sessions together I always wanted to move faster so the good seats near the speakers wouldn’t be taken.
I clearly remember walking into the opening presentation, sitting down, looking around and asking the question “I wonder, which ones are the parents, and which ones are the professionals?” Glen laughed and replied “The ones that look well rested are the professionals. The ones who look beat up, with dark circles under their eyes, are the parents.” He was right. Most of the people in the audience that day were just like us, tired and knowledge-thirsty parents looking for answers.
I left day one feeling totally overwhelmed. I had a long to-do list and new vocabulary that was difficult to spell, let alone understand. There was ANOTHER DAY to go in this conference. I had no idea walking in how much I had to learn. The science alone that was presented during the conference was overwhelming. I struggled with the notion that it was now my responsibility to absorb all this information and decide the right approach to help Jeff.
I remember thinking “I’m just a parent. How am I supposed to know and understand neuroscience, molecular biology, and other ‘ologies’ I have never even heard of?
During that weekend, Glen and I met several folks that would play an important role in Jeff’s future. In the months and years that followed, we slowly started to trust our gut instincts in what or who might be a good resource for our family. Years later, we still listen to our gut instincts and do our best to identify resources as Jeff needs them.
Just one year after our first conference, TACA was born. A key concept behind TACA was the goal of providing Real Help Now to families living with autism. Two TACA programs that fulfill that goal are the one day Real Help Now Conference and the TACA Parent Mentor program. These two important programs assist families living with autism by providing guidance families need from “autism veterans” – sage parents who can remember what it’s like to feel lost, confused and alone.
The TACA Real Help Now conference provides information geared toward helping families help their child, and features speakers who provide practical and applicable information that parents can use every day. At TACA, we work with these professionals to deliver a message of how parents can take positive steps on a daily basis to address their child’s needs.
Parent Mentors provide ongoing support once the Real Help Now conference is over. Mentors are available to meet with parents face to face, as well as over the phone. Additionally, we deploy TACA’s amazing mentors to many other autism related conferences each year. TACA mentors are there to help new and returning families with questions and emotional support. Another key role mentors play is to help families navigate a conference by answering the following type of questions: “Which sessions should I attend if my child is newly diagnosed? Where do I go to learn about IEPs? How do I know where to start – I need help creating my priority list?”
How do TACA mentors know how to answer those questions? Every mentor is a parent or loved one of a child or children living with autism. Every mentor can remember the chaos, confusion, anticipation and/or fear we felt at our first conference after diagnosis.
I am super excited that TACA chapters are teaming up to host TACA’s signature Real Help Now Conference. The northeast regional conference will be held in Pennsylvania on October 1st. This upcoming effort offers an affordable (with some scholarships still remaining) opportunity to learn more about TACA and the many available treatments and strategies that can help children living with autism reach their greatest potential.
I can’t wait to attend and witness our families receiving the timely information they need to help their children. I am proud of the chapter volunteers who worked tirelessly to bring this conference to the east coast.
If you are in the area and can attend, I look forward to seeing you there. The Real Help Now Conference was created to help families TODAY with the issues that affect their children most. My hope for families? That they feel empowered, educated about the options available to their families, and supported by the community around them.
And hopefully, just a little less confused then I was all those years ago.
Real Help Now Conference information: www.realhelpnowconference.com
TACA Mentor program: http://www.tacanow.org/about-taca/parent-mentor-program/
Our stories start the same and I thank you for having the strength and wisdom to start TACA and empower the infinate parents that you will never know have learned from you!!!!!!!! All my love, Brandi Mareno