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H-O-P-E! It is PRICELESS!! – An Autistic Typer’s Parent’s Story

by on February 17, 2014
 
Melissa Troutman Supports Brock (click to enlarge)

Melissa Troutman supports her son Brock at a monthly Celebration of Communication.

“my mom tells me she knows i am smart” Brock Troutman

These are the first words my non-verbal almost 13 year old son diagnosed with Autism Spectrum Disorder (ASD) typed with his Music Therapist, who happens to be getting trained in “Supported Typing [Facilitated Communication]“! That was on October 25, 2013 and our life has completely changed since that day!!

God is so good! Always!! He has never failed, nor will He!

Our son was diagnosed at the age of 3 years by the local Public School’s professionals with Autism, Communication Disorder, and Developmentally delayed. Then, in 2004, at 3-1/2 years he was “medically” diagnosed with Autism and confirmed by the behavioral specialists as well of the same.

When our son was diagnosed with Autism medically, we were told that he probably would never be able to talk and would eventually possibly need to be institutionalized. Hearing those words come out of the doctor’s mouth did nothing but fuel my fire to FIGHT FOR MY SON!

I scoured the internet for as much information as I possibly could find and began looking into the biomedical interventions along with many others. Many made perfect sense and thus we implemented them ourselves. We started the Gluten Free / Casein Free (GF/CF) diet and removed all artificial colors, flavors, and preservatives from all of our foods we ate. This helped our son remarkably. Not only was it helping our son, but it helped our daughters as well! One was diagnosed with ADD and another with ADHD. This small yet huge undertaking did and still does help our son but we wanted more.

Early Intervention: Is it the Best Option? Does it Work?

With all the research I had done, everything I had read kept stating how “early intervention” was best in assisting these children on the spectrum, and that a minimum of 25 hours per week of intensive ABA would help in these early years. After having our son in the “Early Childhood Program” at the local Public School (PS) and feeling as if he required more than the school could offer, we pulled him from the PS and started him in an Applied Behavior Analysis (ABA) center in central Indiana.

Our son did make improvements behaviorally and with quite a price, not only financially for us, but what was evident to be emotionally for him. It was getting to the point where I felt I was literally dragging him to the door of this first ABA Center. I did not feel comfortable with this since he was unable to communicate to me if something was going on that we did not know about.

So, after about 9 months at this ABA center, we removed him and placed him at yet another ABA center that was more of a “parent run” facility. After approximately 7 months there, the same sort of reluctance began to occur, creating “red flags” in my mind. So I went looking for the next ABA center that we could place him in.

Here, at the third ABA center, he stayed for almost a year, until the PhD had decided to leave. We followed this PhD to his new ABA center, which he and several of the therapists from the previous center had started. Our son stayed for approximately 2-1/2 months at this last ABA Center until we pulled him out due to the lack of educational programming.

During all this time we could never seem to get any of these ABA centers to give us help in doing whatever they were doing during the day for us to do at home with our son. So, I decided to go back to college and get my Master’s degree in Special Education to obtain the knowledge that we so eagerly wanted to know, and to learn how to assist our son’s progress at home. As stated previously, during this time we decided to remove our son from this last center because they had only one educational goal they were working on, and it was using sign language to sign the numbers 1-10. Our son was “technically” at the age to be in 4th grade, and this, the only educational program, was placed on hold because he was unable to sign these numbers correctly!

After pulling him out of this last ABA center, I began to work with him myself. Since I was already homeschooling his siblings, I utilized the knowledge gained while doing my Master’s program with the help of my supervisor in ABA. Nothing seemed to work for our son. Finally, I decided to quit all “ABA” / Verbal Behavior (VB) approaches and investigate more of a naturalistic approach to learning.

Alternate Treatment / Therapy Options that may Offer Better Results

We found a, then, Certified Relationship Development Intervention (RDI) Consultant in Indiana and began working with her, doing weekly consults for an hour a week. We would videotape the different things we would do with our son and she would give us feedback as to how we could approach the task/assignment differently. This allowed us to reconnect with our son in a way that we had lost during the other intensive therapies, and we began to rebuild a trust with this approach.

Our son progressed faster than most of her clients, and she convinced us, after approximately 3 years, that he was ready for a more “Dyadic” therapy. (Interaction with other children who are doing RDI.) She too had a “School” / Center which utilizes the RDI approach, and I reluctantly decided to allow him to attend twice a week. He seemed to enjoy the things he did there, but we began to notice our progress in therapy had stalled.

The Power of Music in the Treatment of Autistic Spectrum Disorders

Once our Indiana Waiver services began, we finally had an opportunity to choose a therapy for him to participate in, and chose Music Therapy because he enjoys music. During this time, I had been looking into a mode of communication called “Rapid Prompting Method” (RPM) by Soma Mukhopadhyay, and discussed this methodology with our Music Therapist. She then explained how she personally was getting trained in “Supported Typing” and would be happy to see if our son might be interested in trying to communicate with this method! I was thrilled because I knew with RPM it would take months before we could get to that level where our son would actually be typing on a keypad/keyboard!

During the very first session, the Music Therapist asked him some questions, to which my son answered “yes” and “no.” Then, while I had stepped out of the room, he grabbed the therapist’s hand and typed, “my mom tells me she knows i am smart”!! The app that was used allowed what the typer types to be spoken once the “speak” button is touched. When I heard that I was in awe!! Finally! Confirmation…what I had known in my heart was definitely true! He was in there!!! We had yet to find the methodology of getting to it and for him to let us know up until that moment!

We removed our son from the RDI Center so we could home-school him full-time along with his sisters! He stated just the other day that he “enjoys being home with his sisters and you(me)”!

We are so grateful for Supported Typing and all the hard work and continued research that continues to go on with this method of communication! It has given us HOPE that we had not felt in so long. It has given our son back his HOPE too! For so long he was cooped up in his own body with no real way of telling the world how he truly felt! His behaviors are reducing daily because of this simple fact; communication through Supported Typing has been the gateway to our son’s reduction in negative behavior and allowing him an effective and productive way of communicating.

Ease the Financial Burden of ASDs with Supported Typing / Facilitated Communication

Financially speaking, it has been by far the least expensive therapy we have had over the years regarding all our son’s therapies. Below is approximately the amounts of money we spent at each center with the breakdown of the time beside each! When you begin to add up the cost…it literally is astounding!

Out-of-Pocket Expense for each ABA Therapy

  • Center #1: ~$4,000 (9 months of Therapy)
  • Center #2: ~$6,000 (7 months of Therapy)
  • Center #3: ~$20,000 (11 months of Therapy)
  • Center #4: ~ $4,000 (2 months of Therapy)
  • Center #5: ~$30,000 (2.5 years of Consultation & Center)

TOTAL: ~$64,000 Out-of-Pocket over a 5 year (approx) span of therapy services.

Supported Typing Expenses:

  • Cost of an iPad or other device: $300-500 (Also could get a loan of one from Cross Roads Easter Seals for free.)
  • App for the device: ~$27.00

Total Cost to start using Supported Typing: Under $1000

We utilize the services of a trainer who has been training individuals in Supported Typing for well over 15 years. We pay $45.00 per hour for her assistance in teaching us how to assist our son to become an independent typer. Even adding that cost on to the total cost of Supported Typing, one can see how substantially less expensive yet effective this mode of communication / therapy is for our son, an individual on the spectrum.

  • No more needing to spend additional monies to pay for a “private” insurance policy to pay for our son’s ABA/RDI therapy
  • No more long days of doing things that are not ‘teaching’ our son.
  • Supported Typing has opened the doors for our son in ways we would have never had open had it not been for Supported Typing.

Supported Typing Communication Helps Demonstrate True Intelligence

Our son had read all of his sisters school books as they progressed through their school each year! He shared with us that he began to read at age 5, and little did we know that he was reading his sisters books too. He is actually taking Saxon Calculus, doing college level Physics, and taking a free online Georgia Tech Computer Robotics course as well. He is testing out of the High School Freshman level English, and will begin to test out of the Sophomore level since he has already read it.

He is, technically, in the 7th grade yet doing college level work! Had we not been introduced to Supported Typing, we would have continued to throw money into therapies and services that now, due to his ability to communicate, our son has no use for anymore. He is learning to grab his iPad and my hand, then typing what it is he is thinking, or what he would like, and not having those meltdowns or behaviors that some would call “aggressive,” because he now has the ability to express himself productively. Supported Typing truly has saved my son’s life as well as his dignity.

See for Yourself if Supported Typing can Help Your Child Communicate

If you have a child who has been diagnosed with Autism, you really need to consider coming to the monthly “Celebration of Communication” support meetings to see these non-verbal and verbal individuals communicate with their typing. Your child might just be waiting for this opportunity, as mine was, to grab your hand and prove to you that he/she already knows how to read! It’s nothing short than amazing! The monthly meetings are FREE and a great opportunity to interact with others.

Due to the inexpensiveness of this modality, it is worth the time and very small investment to see if this might be the BIG piece to your child’s autism! When you compare the costs of all the Autism therapies, Supported Typing is by far the least expensive and the only one for us that has given our son HOPE, and that in and of itself is…. PRICELESS!

Melissa Troutman
Anderson, IN