One Parent’s Experience
Background
We started out as a “normal” family – Mom, Dad, and healthy baby boy. Then, I was driving on Hwy 98 by Publix on January 11, 2010 when I received the call that changed my life forever. We had just taken David in for his 3-year check up and everything was great. We would consider Occupational Therapy in a few months if his picky eating had not improved; maybe it was a textural thing. Otherwise, he was a thriving, healthy, happy boy. Despite this good report from the doctor, the phone call came. It was David’s teacher. The conversation was a blur. “Need to have a talk, noticed some behaviors, not engaging with teacher or kids, doesn’t really talk just repeats, hops for 20 minutes at a time under the fan…”My head was spinning. It was autism. I just knew it in my bones. I had seen these very behaviors – hopping and flapping his hands, spinning things incessantly, opening and closing cabinet doors repetitively. I had noticed a dead, shark-like look in his eyes in pictures. I had googled autism a hundred times in the past. Does he make eye contact? Yes. Does he walk on his toes? No. Nope – can’t be autism. I had him pegged as gifted. How can a 3 year old say the alphabet backwards without a second thought and count to 100 in Spanish but not be able to express himself verbally? Gifted kids have asynchronous learning. He’s behind in one area (speech) because his brain is busy excelling in another (numbers & letters). Denial at it’s best!
The next several months were a whirlwind of waiting lists and worry. Eight total months to get the actual diagnosis – High Functioning Autism. Then what? There’s no cure, no one proven treatment, no “protocol” after the diagnosis. You get a list of resources and you’re on your own.
ABA and Speech Therapy
So we hopped on the roller coaster that is autism therapy. Apparently, early intervention is key to later success. (So not only are parents dealing with their own fears and grief, we also feel like a timer is ticking to get some type of treatment for our kids). After more agonizing waiting lists, we started OT twice a week and Speech Therapy once a week. We also found an amazing psychologist, Dr. Alicia Jones, who worked with us using the principles of ABA (Applied Behavioral Analysis). Dr. Jones felt that Luke and I were smart enough and involved enough to work with David ourselves at home. This would be more cost effective. She would teach us what to do during weekly sessions. So we bought the assessment book (ABLLS) and started our ABA education. First, you set a goal. We decided to work on communication first. At this point, all of David’s speech was echolalia (just repeating what you say). We sat with Dr. Jones and the assessment guide week after week trying to decide where David was in his communication, where we wanted him to go next, and made a specific, painstaking plan for how to get there. Then we would go home and start the implementation. We saw Dr. Jones weekly at first, then eventually bi-weekly, then monthly until we became pretty confident in what we were doing. Between our work with Dr. Jones and the Speech Therapy he was getting, David made tremendous strides! His echolalia was replaced with more meaningful speech, he learned to answer “wh” questions, and ask for what he wanted. In our ABLLS assessment book, we kept moving forward and setting new goals. And he was meeting them! It was awesome! We then moved on to other behaviors like toilet training and keeping a “calm” body.
I do not know what we would have done without Dr. Jones and the support of Speech Therapy. The other “high pressure” part of all of this is that it is recommended that kids with autism get at least 25 hours of intensive therapy per week!!! But Dr. Jones taught us that everything we do at home can be a learning experience. “Let’s go to the pool. What do we need to pack in our bag?” “Let’s make your cinnamon toast. What do we need first?” I also bought tons of stuff online to support our efforts. (I wasted a lot of money because the choices are SO overwhelming.) I cannot tell you how agonizing it is to never feel like you are doing enough and that time is running out!
Value of “Talk”
David has made incredible progress with ABA and Speech Therapy. This is why I am a firm believer that Autism Avenue and “Talk” can have a tremendous impact, both for parents and children. The program is developed by an ABA expert to do exactly what we were doing with Dr. Jones. The program helps the teachers, therapists, and parents to assess the child and set goals. Then, it has the tools needed for implementation, whether at school, in a therapy session, or at home! Everyone is on the same page! As the child makes progress, the goals change. The overwhelming array of tools and picture cards that are available online will be paired down to the ones that work. They will be right there at your fingertips, and, best of all, an ABA expert will have endorsed them! No more scouring the Internet for resources only to later realize that you have wasted your money on something that doesn’t work for YOUR child. This tool would have been invaluable to us when we were starting on David’s communication goals! I credit Dr. Jones and Speech Therapy with getting us where we are now. “Talk” can offer this chance to all kids, regardless of resources, effectively and at a reduced cost, both financially and emotionally.
Cost of Therapy
So, as a parent, you are worried about your child’s future, feeling pressed for precious time for “early intervention”, and unsure whether you are doing enough and then, the bills come in. The financial and emotional burden of treatment is huge! Luke and I have great insurance. We are college-educated professionals. We made the decision early on to invest in David’s “early intervention” by having Luke stay home with David to run him to countless therapy sessions and doctors appointments. I am obsessive to a fault, which means I have researched and analyzed and worried about every facet along the way. At the end of the day, we are drained. What about other parents? There is an autistic boy in David’s class whose great-grandmother is raising him. I doubt she has the energy to run him around town to therapy! There are kids with really young single parents who are in denial about their own children’s conditions and don’t even want to spend time with them because of their behavior issues. Are these parents going to take the time to learn ABA therapy? What about families where both parents absolutely have to work to make ends meet? Will they have time and energy at the end of the day to work on communication skills? I see “Talk” as giving these kids a chance to get the same level of treatment that David has received regardless of the parents’ limited time, resources, and energy. After a long day of work, wouldn’t it be nice to simply pull up “Talk” on the tablet and have the child do some predetermined, fun exercises that work towards his goals?
As far as numbers. I see “Talk” as an adjunct to ABA and Speech Therapy. Here is a 2 year cost breakdown of these therapies if David had not had insurance:
| Speech Therapy | 96 hours | $90 per hour | $9360 |
| ABA Therapy | 38 hours | $120 per hour | $4560 |
| $13,920 for 2 years |
This doesn’t include 2 sessions of OT per week ($18,720) plus doctor’s visits, private home based ABA Therapy (we hired a student at $15/hour), and the countless tools I’ve purchased off the Internet. I would estimate that total costs for an uninsured parent for these services would be at least $15,000 per year. (Even with insurance, we’ve paid out-of-pocket at least $3000 per year.)
Impact
Children with autism have difficulties with repetitiveness, communication, and social skills. But, if you can get beyond this, they are incredibly smart and have an amazing ability to focus. David knows ceiling fans. At 5 years old, he can take you to the Lowe’s fan department, identify each hanging fan by model name, tell you the size, if it has a remote control, whether it’s indoor or outdoor and what page it is on in the catalog! These children are the inventors of the future. By helping them to overcome their challenges, their real gifts that can impact society will emerge.
As you can imagine, as a full-time working mom with a son with autism, I am extremely picky about how I spend my time. For me, Autism Avenue and its mission are totally worth the effort. Autism Avenue isn’t about causes or cures. It’s about helping the 5 year old boy that wakes me up every morning saying, “Mama, you’re the light of my life” live up to his potential.
We are very thankful for individuals who share their experiences with not only us, but with the autism community. We hope you find peace and encouragement in knowing that you are not alone on this ever changing and wonderful journey on the spectrum.
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*Names have been changed at the request of the author*
