T is for Tools - What tools are there now that were not there in the beginning that could help other parents ?
I is for Inspire - As a parent , when you look at your child or children what inspires you ?
S is for Support - Are there things you struggle with or have struggled with , and what types of support do you still need ?
M
is for Manage - What keys to success can you leave with parents so that they can better manage their day-to-day efforts ?
AUTISM ADVOCACY
T is for Tools - What tools are there now that were not there in the beginning that could help other parents ?
When Ava was diagnosed with autism I thought someone would hand me a pamphlet that would provide guidance on where to seek therapy , how many hours of therapy she would need , etc . That didn ’ t happen because in 2006 , that didn ’ t exist . When I inquired about programs for children with autism , I was told there were effective therapies , but they were too expensive and I wouldn ’ t find those programs in the state of Georgia . I was determined to help my daughter , so I attended a training session hosted by Early Autism Project . I think I was the only parent there . The room was full of teachers and speech therapists , but it sounded interesting so I stayed . At this training session , I learned about applied behavior analysis ( ABA ) therapy . I knew , based on my own research , that it was the most effective therapy for children with autism and typically not covered by insurances . At the time , Early Autism Project only provided home-based ABA therapy in Georgia and it was incredibly expensive because there was no insurance coverage . I didn ’ t care . We immediately started ABA therapy and I saw a dramatic difference in Ava . Early intervention helped Ava progress from a two-year-old who we were told would never speak or be in a regular classroom , to a successful eighth-grader who is thriving in a general education classroom and no longer requires intensive treatment . That is why I fought for Ava ’ s Law , which made Georgia the 41 st state to mandate insurance for children with autism . Thanks to state mandates like Ava ’ s Law , more children can receive therapy . Parents have more hope than ever before because there is greater access to services .
I is for Inspire - As a parent , when you look at your child or children what inspires you ?
Every day I am inspired by Ava ’ s bravery and her tenacity to work hard . It requires such commitment for a child to participate in 30-40 hours of therapy a week . Children with autism have to work harder for everything . I watched Ava struggle to learn all the skills that come naturally for most children . However , Ava was committed to working hard because she knew ABA therapy was critical to her reaching her full potential . Her mature understanding of the power of
therapy is the reason she now redirects her energy towards advocacy . She wants to ensure all children have access to ABA therapy . As I said , I am inspired by my daughter every single day .
S is for Support - Are there things you struggle with or have struggled with , and what types of support do you still need ?
I struggle when parents who have a child with autism see the amazing progress Ava has made and they want the same outcome for their children . They want access to ABA therapy . I struggle with what I tell them because that treatment can cost $ 20-30K a year and most parents can ’ t do that without some kind of financial assistance . Children all over the country are being denied access to treatment . That is why Ava ’ s Law in Georgia and similar mandates in other states are so important because they provide children with coverage for life-changing autism therapy .
M
is for Manage - What keys to success can you leave with parents so that they can better manage their day-to-day efforts ?
A strong support system is key when you have a child with autism . You need to surround yourself with people who believe in you and your child and the importance of the therapy . Raising a child with autism is difficult , but good friends and family can provide you with the encouragement you need to keep going . Society also puts a lot of pressure on parents to do everything at once . When children start therapy , you feel like you should be doing everything you can to help them . My suggestion is to try one thing at a time to help you determine what is going to work for you , your child , and your family . You can always add to things . Parents feel pressure to do everything and it just isn ’ t possible .
Derrick Hayes is an author , motivational speaker , and paraprofessional with autistic males in the Muscogee County School District in Columbus , Georgia . For contact or booking information , visit his website , email him , or call at ( 706 ) 615-1662 .
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56 | Autism Parenting Magazine | Issue 65