Breaking Down Barriers
May 24, 2012
By Lisa Ackerman
When you get the news that your child has an autism diagnosis it IS an overwhelming experience. I know, as I have been there. That is why TACA was born. I never wanted another family to feel the same way I did almost 13 years ago.
Even TACA families with unlimited resources of time and money are struggling. TACA doesn’t care about your socioeconomic status, your ethnicity or where you live. We support you just the same.
Many TACA families are living average to below average in the salary world, but above average in their ability to open doors for their kids. With the past 12 years of supporting these families under my belt, I have seen common characteristics on what these families can do for their kids. They are my heroes.
By sharing this information, I want to help families overcome any barriers they might encounter. Every family should know what these common characteristics are and use them with best practices to help their own child.
Here is what they have done:
Step one: GET CONNECTED!! Good things happen when you integrate and mingle with forward thinking, positive parents. The folks connected are the families doing better overall. They plugged into TACA via Live Chat, meetings and always via a free, trained, experienced TACA mentor (1)
Getting connected can be seen in so many ways. They have access to meetings and speakers, free library books, parent feedback; they get plugged in at these efforts on deals and family discounts, and interact with movers in their community. They are the definition of connected.
Step two: Figuring out “Who and what?” These families attended a local or regional conference. They went prepared by researching speakers (or speaking to their free TACA mentor) that could possibly help their child based on their unique issues. They arrived at the conference with their child’s binder and introduced themselves to doctors, vendors, therapists, researchers asking questions. These questions were answered for free. They narrowed the large field of providers to who they felt a connection and who they felt could help their child. After receiving valuable information they trusted their gut. Thankfully, TACA has scholarships for families in need (2) or have used TACA resources: “Who Pays for What” and “Biomedical on a Budget” to make these steps happen. Thankfully, Miracle Flights helps TACA families get there – wherever those resources are for FREE. (3, 4). Often these families get to conferences for free because they sign up early to volunteer AND learn.
Step three: For meetings they drive by topic
There were over 250 TACA meetings in 2011. Many of these families drove to TACA chapter meetings that were often 20, 30, 50 minutes or several hours away motivated by the topic important to them. While I know TACA is only in 18 states, I do know many families who cross state lines to get the information they need. Many of these families found child care and used the time to decompress and revitalize their energy to help their child be the best they can be.
NOTE: I wish there could be a TACA location wherever we are needed. The cost is not something TACA can afford. In addition, we need volunteers at each location to support and sustain the efforts once we establish a chapter. We love it when outside donors help us help communities in need.
Step Four: Doctor travel time – they secure physicians that are not typically down the street. They secure folks that are experts in addressing their kid’s needs. At the conferences you go to, it is worth listening to doctors speak, catching them during the question and answer period, and offering to buy them a snack for a moment of their time. For years, my son’s doctor lived on the opposite coast. We were separated by almost 3,000 miles. I was able to work with the doctor to see him annually for our visits at convenient locations (sometimes on vacation and often at a conference) with my child in tow and provide follow up via email and phone consults to make sure we kept things on track. Those 3-5 hours per year consulting with a doctor where I had a more direct connection and they provided specific expertise was the best time ever spent. For my son, he got the resources needed from the expert that could help him.
Step Five: Breaking down the wait list: when you have a child on the spectrum, many good resources have wait lists for new patients. These wait lists could be up 3, 6, 24 months or more until there was an open time slot. Some have closed accepting new patients in their practice. These families found ways to move that wait list to a shorter time period by asking for any cancellation (even for a closed practice.) The first step, make sure the office has all the new patient paperwork and other items needed for your child – for example, copies of detailed reports from previous years. Then offer to fill ANY cancellation with a phone consult. Once you have a phone consult, you are a patient, and then can schedule a follow-up appointment that works best for your schedule. Get to know the front desk reception, know their name and call to check-in each month. Many of these offices know that parents who follow up and check-in frequently make good patients and often follow protocol in detail. They appreciate parents who are kind and follow through on each step. They are not bugged by families that check in on their wait list.
Step Six: Create a plan and annually review it – the TACA Blueprints help families create a plan for treatment and to use as a guide for their next steps with their professional team (5). They review this plan each year to make sure things are moving forward in a positive direction, and to plan their next steps. A journey of a thousand miles starts with one step. Let TACA be your guide. Thousands of families breaking down barriers stick to moving through the TACA Blueprints as their primary tool.
Step Seven: Tired? Read staying in the game - Everyone gets tired. Writing this article has made me tired so I know how families must feel reading it! I wrote about this topic recently and know when to say I need a break and how to stay engaged on the autism journey (6). I still refer to this article to keep me focused on helping Jeff – even 13 years later. I also give myself a much needed break when I need it. That way I am refreshed and able to jump back in with the energy I need.
A great example that exemplifies barrier breaking is our TACA Coordinators, mentors and key volunteers. They are volunteering hundreds of hours a year to help TACA help families. They frequently drive many miles to and from meetings and coffee talks in order to go where the families are. None of these volunteers are reimbursed for mileage or paid for their effort. They do this because they love seeing how families feel inspired after each effort. They cannot wait to talk to families in need at conferences, meetings, and coffee talks – USE THEM! They are incredible resources who are connected, ready to share valuable and time-saving information. I love these folks. We could never pay them what they deserve!
The goal is setting a plan, gearing up to help your child, and then finding a way to break down barriers but doing that with the help of families that have paved the way before you. They want to share and help you. These steps exemplify families who excel, not in their pocket book, but in resources to break down any barriers. It is amazing what these TACA families have done! I am inspired by them and just had to share.
1) Find a TACA Chapters http://tacanow.org/local-chapters/ . If there isn’t one by you – check out TACA live chat for support. http://tacanow.org/about-taca/real-help-now-live-chat/ and TACA Parent mentors http://tacanow.org/about-taca/parent-mentor-program/
2) TACA Family Scholarships http://tacanow.org/about-taca/family-scholarship-program/
3) Who pays for what http://tacanow.org/family-resources/who-pays-for-what-a-guide/
4) Biomedical links
a. Biomedical on a budget http://tacanow.org/family-resources/biomedical-treatment-on-a-budget/
b. What is Biomedical treatment for autism http://tacanowblog.com/2011/10/13/biomedical-treatments-and-autism/
5) TACA Autism Journey Blueprints http://tacanow.org/family-resources/autism-journey-blueprints-guide/
6) Staying in the game http://tacanowblog.com/2011/11/03/staying-in-the-game/