Where are you on journey? Do you have a young child recently diagnosed with Autism? Have you been navigating your way for a few years now? Or, like me, do you have a teenager/young adult eager to get out in the world? Wherever you are, the hope and dream of giving your child the gift of communication is probably always on your mind, as it has been for me the past 17 years.
Maci has lived with apraxia and dyspraxia all her life, making clear communication nearly impossible. Speech therapy has been a way of life for us; many hours, days, months and years, bouncing between diﬀerent speech pathologists. Throughout the journey, Maci has never given up. She is such a hard worker; persistent and very determined.
Maddeningly, her motor challenges are so severe that we have found no therapy that has yet to give her reliable verbal or augmentative and alternative communication (AAC). In my last blog, “Our Journey to find Maci’s Voice,” I spoke about the history of Maci’s communication challenges and how that has led us to find our way to Facilitated Communication.
As promised, this month I’m updating you on where we are today. Oh, how I wish I could say I am sitting here, writing this, feeling optimistic about the progress Maci has made and confident in the ultimate success of this mission. Honestly, it feels like we are taking a very long and slow trip up a windy mountain road.
I guess this road trip actually started years ago when we lived in California. Maci had a wonderful and highly regarded speech pathologist. I witnessed, with joy and hope, several of her clients (all non-verbal kids) develop amazing communication skills through her teaching of Facilitated Communication. We worked with her for approximately four years. Over time, we progressed from home visits to a combination of home and in-classroom sessions. She was making great strides, and as a mother, my heart was so full that Maci could finally have a way to express herself.
But, life happens and we experienced an abrupt stop when we moved from California back to our home state of Washington. I remember thinking at the time, “we’ve got this! We have moved before and found an amazing team to work with Maci. We will most certainly find a similar situation.” So much hope. Well, unfortunately, the long road went through a very windy part for quite some distance. It took me close to four years to get anyone in the Seattle area who would even talk to me about Facilitated Communication. I was filled with so much hope, writing my last blog, that we found an amazing person to help us get started on RPM (Rapid Prompting Method).
Since my blog a couple of months ago, the road has taken another twist. We’ve transitioned to a slightly diﬀerent form of Facilitated Communication called Spelling 2 Communicate (S2C). I found an organization I-ASC, International Association for the Spelling as Communication. What is S2C? From their website, “I-ASC is an association composed of individuals from the nonspeaking and neurodiverse communities; their families; trained practitioners; and informed allies.” Their mission is to ensure “access to eﬀective communication that supports agency and autonomy for nonspeaking, minimally and unreliably speaking individuals.” Essentially, they work with people on the spectrum to bring them to a level of effective AAC communication by focusing on developing motor skills that can help a non-verbal person have the control to spell or type.
I was drawn to them because they concur with my belief that a lack of communication ability does not equate to a lack of intelligence. Their system works with an individuals’ abilities to teach them how they can regulate their bodies to better communicate with others.
Maci is now working with a therapist who is helping develop the motor skills necessary to point to letters and spell words. Over time, the goal is that, with consistent practice, she’ll move on from just pointing to letters on letterboards to typing on a keyboard.
Maci’s determination is an inspiration for me. Her will has pushed me not to give up, despite the long and difficult process to replicate the Facilitated Communication therapy we had in California.
As I write this, Maci has had over a month of S2C sessions, 2 days per week. I am excited to report that she is making great progress with her body awareness and ability to control her movements. It is understandably very hard and frustrating for her. Yet, with each session her frustration is less and her confidence increases. She enjoys working with Diana, her S2C practitioner. I am more hopeful and encouraged than I ever have been that maybe she will finally find her voice.
It has been a long windy road to get here. And I know we still have twists and turns to come. I hope you will all stay tuned to follow us on our journey.
Marikay Cuthill is mother of Maci, a vibrant, curious 17-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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