Italy vs Holland….

Like most parents, we imagined providing our children every opportunity to be healthy, to be happy, and to enjoy life. Each family, parent, and child handles an autism diagnosis differently. Those desires do not go away - the journey just changes.   

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There is an inspirational poem shared amongst parents of children with disabilities called, “Welcome to Holland” by Emily Perl Kingsley. It’s a wonderful poem about expectations and realities. This poem centers me. It reminds me to see my child first. Not his disability. 

This is our journey pursuing the destinations of health, joy, and happiness through the waves of autism in Ryan’s Riptide. 

 

Toddler Awareness

As Ryan neared his 2nd birthday, he did not say many words. The occasional “cat”, “cake”, “pop-pop”, “ma” and “da” could be heard but not consistently. He babbled and expressed many sounds, but his language was not moving forward. His pediatrician referred us to our local Infants and Toddlers program for an evaluation. This evaluation did indicate “red flags” for Pervasive Development Disorder (PDD-NOS). They did not use the medical diagnosis of autism during the evaluation, but they recommended an intervention program. Ryan had just turned 2. 

 

The first time we heard the word “autism” was at the intervention program.  During our visits, we learned Ryan had been placed in an “autism room”. The lead teacher was incredible; she was kind and caring and worked with Ryan four times/week every morning for a year. The Infants and Toddlers program included Applied Behavioral Analysis (ABA) therapy techniques, as well as socialization. 

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At age 3, Ryan still did not have any reliable language or communication. The local services at the Infants and Toddlers program recommended that Ryan enter into a formal Early Childhood Intervention (ECI) program through the County schools. The thought of putting our nonverbal son on a school bus at age 3 terrified me, so I looked for other options. 

 

Preschool Development

Fortunately, I found a local pre-school for children with special needs called the Cisco Center which offered ECI. The owner, Cisco Nochera, an experienced and recognized special educator with over 40 years of service, had created the foundation for our County's ECI curriculum. The Cisco Center was built to enhance ECI with therapies such as occupational, speech, music, socialization, and even potty training. The Cisco Center offered kindness, compassion, day care, and therapy  - all in one location.

Ryan thrived there. He learned so much at the Cisco Center from ages 3-6. He was successfully potty-trained, was able to function in a group, no longer cried at social outings, and enjoyed going to school. 

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During this time, we had to seek a medical diagnosis to determine insurance coverage for therapy services. We were on the waiting list for over a year to be seen at Kennedy Krieger’s Center for Autism and Related Disorders (CARD) Institute. At age 4, they evaluated Ryan and formally diagnosed him with autism. Once we had the diagnosis, we continued to pursue private therapy services to help him. Ryan continued with occupational, speech, and physical therapy from ages 4-8. 

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It was hard to leave the Cisco Center, but Ryan had to start his school career. He entered elementary school and was placed in a self-contained classroom for children with autism. The school was not our home school, so Ryan had to be bussed there. Unfortunately, he did not have an opportunity to go to school with peers in our neighborhood. However, he seemed to enjoy the routine of school, being around other kids and having an opportunity to be part of a community.

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By age 8, we felt his progress stalled. He still did not speak. He did not have a reliable method of communication. Ryan's journey through elementary school had now thrown us into navigating the Individual Education Plan (IEP) process first-hand.

 

Childhood Development

Age 8 was pivotal. It is often said that autism moms are great researchers, I definitely can relate. Sometimes you have to discover, navigate, and chart an alternate course.  I had already delayed Ryan’s start of Kindergarten by a year, had him repeat Kindergarten, and managed first grade.  

Ryan was now in second grade. I came across a video of a nonverbal young man spelling on a stencil. Philip Reyes. While I am unable to locate the original video that I saw, you can learn more about Philip from his page:  Faith, Hope, and Love with Autism.  I was inspired. I watched that video and saw our Ryan. I recognized the mannerisms and behaviors and what I realized were possibilities. The hope. 

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I immediately started to learn as much as possible about the technique Phillip used, the Rapid Prompting Method (RPM) developed by Soma Mukhopadhyay at the HALO Institute in Austin, TX.  I purchased her books and started to immerse myself in this new technique. We signed Ryan up for his first RPM camp at the HALO Institute with Soma in 2015. It was life-changing. 

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Soma worked through all of Ryan’s behaviors and started to reach him. He began answering questions by pointing to pieces of paper, then Soma would have him spell the words on the stencil. The camp was only four days, but by the fourth day, Ryan was spelling. I couldn’t believe it. Everything Ryan had been experiencing in his life, he was absorbing. From that point forward, I treated him as if he understood everything I said. 

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We returned home from RPM camp and I immediately implemented the strategies we learned. Acknowledging that Ryan has autism and controlling his body to do what he wants it to do was still a challenge for him, but we were able to read stories and expose Ryan to grade-level content. We practiced everyday. After about six months, Ryan was not moving forward with this demonstrated communication technique.

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So we signed him up for another camp. Back to Austin in 2016, Soma worked more magic. All of sudden he was answering open-ended questions and even wrote a whole story with her - about a frog named Mark!  I took the new tools and returned home. He responded for a bit and then we hit another wall. He would only choose answers on the left side and wasn’t interacting with me in the way he interacted with Soma. I was beyond frustrated and I’m sure he could sense that. 

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Early Adolescence

By now he was 10. I didn’t want to drag him to Austin again, so I started to search for RPM providers in the area. I found one in Herndon, VA. We drove out for an evaluation. Lo’ and behold, he did the same thing to that provider, kept picking options on the left. In a way, I felt relieved. Like it wasn’t me. So we returned home and I refused to give up. We just kept practicing spelling and lessons, 10 minutes every day. He was not answering open-ended questions for me, but I continued to read stories and do lessons and expose him to the content, then spell the answers on his stencil. I knew he was absorbing it. Even if he wasn’t spelling for me, I knew it was in there. My stubbornness and his stubbornness went head to head. 

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My search for local providers never stopped. I stumbled upon an RPM provider that would come to the house, Lisa Quinn. Lisa was just forming her organization called Reach Every Voice and she was providing in-home services. She came to our house once/week to work with Ryan. Under her help, he started answering open-ended questions. I remember overhearing their conversation right before Halloween. He typed to Lisa that he didn't want to go trick-or-treating. Instead, he wanted to dress up as a Ghostbuster and get pizza that night. HUGE BREAKTHROUGH. Never, ever had he expressed a personal desire. You can bet, I scoured the costume shops to get him his costume and we had pizza that night. Finally, after 10 years, I was getting to know my son’s mind and thoughts. It was AMAZING.

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Lisa unlocked him. Meanwhile, she opened an office in Rockville and hired more providers. We started traveling to her office twice/week to work with different staff members. Ryan progressed from stencils to typing on a keyboard. After a year of many long trips to Rockville multiple times/week, we took a break from formal sessions and continued our own at-home practice. 

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I need to mention that at this point in time, his school did not recognize his typing or RPM. Unable to conventionally assess Ryan’s knowledge, the school evaluated him as having an Intellectual Disability. I fought the school and the IEP team for years on their evaluations. I hired advocates, paid lots of money for private evaluations, but in the end, it didn’t help, nor matter. Even more frustrating, he would not demonstrate his knowledge and abilities for his IEP team. Stubbornness, at its best. He had some wonderful teachers who would watch the RPM videos that I would show them and even attended some virtual sessions. His school even allowed Reach Every Voice to observe in the classroom. Just when I felt the school was listening, all progress came to a halt.

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Adolescence

In 2019, just before the pandemic, I reached out to Lisa again about our stalled progress. She welcomed us with open arms and told me she had a therapist that would come to our house. Ryan was 11 and in fourth grade. Miranda started coming to the house and working with him. At this point, his typing was functional, he would answer questions, but not expand on too many thoughts or opinions. With Miranda - someone not his mother - his typing flourished. He went from answering questions to writing stories, poems, and having deep conversations. It was and is awesome to witness. He continues to work with Miranda often, even today. She has taken him from writing simple kindergarten-level sentences to writing complex sentences and thoughts. She has become part of our family. Ryan loves working with her and is very connected to her.

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The technique he uses with her is Facilitated Communication (FC). He requires pressure on his wrist to slow his motor movements as he types on the keyboard. This process has changed over the years, and now he just grabs Miranda’s finger to type. Think of it as training wheels- he likes the comfort and security of holding Miranda's hand, but he doesn’t need it. Miranda has been pushing him towards independent typing and he continues to work on this as a goal. He will type some words on his own, and then reach over for her hand to continue the typing. Training wheels.

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It’s been amazing, finally getting to know my son on a whole new level. Knowing his mind, his thoughts, likes and dislikes. Prior to age 10, we had to guess at everything. But now, he can tell us. He can order food at a restaurant, tell us what he wants for his birthday. He plays games with the family, some of our favorites are Double Ditto, Apples to Apples, and Just One. 

 

It’s been quite the journey, but it’s not over. There’s still much to experience and enjoy. 

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One favorite memory of mine is when Ryan actually typed, “I love you.” to me.  Words that I had longed to “hear” and words that continue to guide us on our journey to be the best version of ourselves.

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Special thank you to some special people that helped me edit this:  Ryan's Aunt Jen, Miranda Cobo, and Kari Rea.