Let Me Spell It Out
Special needs parents are part of a tribe which shares deep connections whether they know each "member" personally, or not. As a community, special needs parents want what works for their child, and they are more than willing to share the things that work so others can reap the benefits as well.
About two weeks ago, I received a text from someone I hadn’t connected with in years. She asked me if I heard about Spelling to Communicate. I hadn’t, so I Googled it. Honestly, I didn’t have much time to give it a deep dive. I only glanced. It appeared to be something similar to a therapy we tried. Then, within days of that, another person reached out to me and asked about the same thing. Since I take such things as signs, I could not ignore this nudge.
You know how it is when one search leads to a website, which leads to another site, and so forth. Before you know it, you have seven tabs open and you’re copying links and making notes as fast as your fingers will allow. I began to sense I was on a very good path.
I’ll take you back to 2002 for a moment. As a new parent, your insides tickle and your soul lights up when you hear your baby utter dada or mama for the first time. Akin to watching your baby’s first steps, hearing your baby’s angelic voice say his first words is a treasured moment.
Not only did we hear a firm dada but I also felt pure joy when my presence sparked mamamamama accompanied by outstretched arms. Our dog at the time, Bo, was beckoned with Buh-buh. A true golden retriever, Bo responded to the tiny person pulling his tail.
Around the time up became functional, we began feeling down. Something was on my radar, but I wasn’t sure what. When no other words got spoken, and dada, mamamamama, Buh, and up disappeared overnight, an internal red flag was raised high.
Fast-forward to present day. My son does not communicate with his voice. I believe it isn’t accurate to say he’s nonverbal. By definition, ‘nonverbal’ means not using words/not involving words. It can also mean lacking the ability to engage in speech/discourse. My son Zach uses words, just not in the typical way.
He is involved with words daily, whether it’s through his communication device, sign language, books, or spoken language. He understands words said to him and around him. He may lack the physical ability to engage in speech, but he can relay needs, wants, and preferences through alternate means.
With every intervention we’ve tried and every attempt to further his communication skills, we’ve hit certain walls. I believe there is not a single creature on Earth who does not have within them the desire and will to express what is in them. There have been those who have wrongly assumed that not having the ability to speak words equates to not having anything to say. In my opinion, such mindsets are dead wrong and damaging.
So when an intervention comes along that presumes competence in the person with speech challenges, I am all in. I found the International Association for Spelling as Communication (IASC) website, and I dove in.
Their mission is to advance communication access for nonspeaking individuals through training, education, advocacy, and research. They support access, agency, and autonomy for nonspeaking, minimally, and unreliably speaking individuals. Put simply, they believe all people should have a voice.
Spelling to Communicate helps the nonspeaking person by teaching the motor skills necessary to point to letters to eventually spell words. As an alternative form of communication, the teaching of purposeful movement to spell helps to integrate cognitive and motor skills, which leads to communication with intention.
As we have not yet entered this arena officially, I cannot write first-hand about how S2C works. I know that I am intrigued by their mission. I also know that JB Handley and his son Jamison write about S2C in their book Underestimated: An Autism Miracle (March 2021).
To watch a nonspeaking person emerge from a shell of silence to reveal to their loved ones what they are truly thinking and feeling inside is nothing short of astonishing. It is what I hope for my son. I can’t wait to have him tell me through independent spelling that the shoes I bought him are NOT what he wants, or that he’d like to learn about world history, black holes, or the wild horses on Assateague Island.
Maybe he’ll tell me he’d like to take skydiving lessons (hopefully not), or that he really wants to take a trip to Alaska or to the Dominican Republic. Who knows, he might even spell i-want-b-l-u-e-h-a-i-r in which case we’re headed to a salon.
Some may view parents who try this, that, and the other thing in an attempt to help their child with autism do something (or not do something) as chasing their tails. It’s true that sometimes something we seek or try doesn’t have the intended effect, if any effect at all. It can be difficult to determine what may help a certain situation and what will not. All we can do is try.
When it comes to something that has the potential to help my boy find his voice and express his inner thoughts to anyone willing to listen, I will try and give it everything I’ve got. He, and anyone whose voice is locked within, deserves to be heard in whatever form of communication works for them. Not being able to speak is certainly not the same as having nothing to say.