Our Journey to Find Maci’s Voice: The Beginning

Back early on in our journey when Maci was a baby (she is now 16!), we knew she was not meeting developmental milestones, especially in relation to speech. After approximately a year of working with a speech and language pathologist (SLP), Maci was diagnosed with Apraxia.

According to the National Institute on Deafness & Other Communication Disorders, “Apraxia of Speech (AOS) also known as Acquired Apraxia of Speech, Verbal Apraxia, or Childhood Apraxia of Speech (CAS) — when diagnosed in children—is a speech-sound disorder. What that means is that someone with AOS has trouble saying what he or she wants to say correctly and consistently. AOS is a neurological disorder that affects the brain pathways involved in planning the sequence of movements involved in producing speech. The brain knows what it wants to say, but cannot properly plan and sequence the required speech sound movements.”

Looking back, we honestly had no idea how impactful Apraxia would be for Maci still today. Then, I truly felt that with therapy and time Maci’s Apraxia would resolve. She would connect her neuropathways and be able to communicate “normally.” I can’t tell you how many SLPs, specialists, doctors and alternative treatments we’ve tapped to help Maci improve her communication and speech. In addition to all the above, we’ve tried other strategies, including implementing a typing and augmentative technology to assist her with communication.

Apraxia affects all motor planning and coordination. As a result, writing, typing and pointing at devices (so important in today’s world of mice and scrolling!) is equally challenging and frustrating for Maci. And it follows then that participating in school and a traditional educational setting is really hard for her and extremely exhausting. She puts so much energy into motor planning throughout her day with little to no support. I can’t tell you how frustrating that is for me as a parent.

Thankfully, several years ago, one of the SLP’s we worked with introduced us to Facilitated Typing (also known as Facilitated Communication) as a way for Maci to communicate. We strayed away from it for a time, but we recently have reintroduced supported communication into Maci’s communication regimen. Specifically, the method we are using is called the rapid prompting method (RPM). RPM is a technique that allows people with autism or other disabilities to communicate through pointing, typing, or writing. It’s also known as Spelling to Communicate.

Now, full disclosure, there is strong criticism of facilitated communication and RPM as legitimate forms of communication for people with Autism or other motor challenge disorders. The American Speech-Language-Hearing Association has issued a statement opposing the practice of RPM. They have stated that “until future trials have demonstrated the safety and effectiveness of RPM, and perhaps more importantly, have first clarified the authorship question, we strongly discourage clinicians, educators, and parents of children with ASD from using RPM.”

But as a parent, and the expert on your child, sometimes you have to trust your instincts – and trust what works for your child.

Our Journey Begins…………

So, despite the caution from the ASHA, we are going to try RPM – searching for any way to help Maci better communicate better with the outside world. We have found a person to help us teach Maci. We are working with Maci’s school to have her use RPM effectively with her teachers. At this point and with a lot of review, research and determination, I believe this may be the best vehicle to finally give Maci her voice.

I invite you to stay tuned and join us in our journey! This is uncharted territory for us and I will be blogging and sharing videos on our experience, the ups and downs and all what we are doing and learning each month. I hope this will be informing, helpful and maybe even eye opening to the possibilities and potential for others.

I also want to share some amazing work from the person who is helping us. Her son is proficient in using RPM for communication, writing and text to speech. Grant gives presentations at conferences, writes for publications and is part of the CommunicationFirst organization, all the while considered non-verbal.

I am very excited to be sharing this information to all the MAP followers! Please show up each month and see how we are doing. We’d love to hear your thoughts, ideas and opinions!

Information about RPM:

Communication/Autism-related films, books, & blogs:

Marikay Cuthill is mother of Maci, a vibrant, curious 16-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com

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