What is the impact of childhood intervention on those who continue to stutter into adulthood? Many adults have shared their experiences in memoirs, on podcasts, in blogs, etc. and most of those experiences are stories of recovery – not from stuttering, but from the impact of earlier therapy. Parents can benefit from reading these accounts, but that’s a lot of searching and reading for a busy parent.
My new book, VoiceS Unearthed: The Impact of Childhood Intervention on Those Who Continue to Stutter, provides parents – as well as trainee and qualified speech and language therapists – a curated collection of interviews that conveys the reality of the impact of childhood intervention on those who continue to stutter into adulthood. Sixty adults provide us with a precious long-view and take us into the contrasting experiences of therapies focused on fixing and those focused on addressing emotions and short- and long-term quality of life. VoiceS Unearthed also provides analysis and context by identifying the recurring themes, challenges, failures and successes that surfaced.
Most parents were blindsided when their child first began to show speech tension and knew little about stuttering. They were clueless as to the pros and cons, the controversies and concerns around therapy options – or even that there were options. As one parent put it:
“Sadly, when you’re parenting, you don’t know what you don’t know. You throw a dart in the dark and hope the dot that you’re picking is the one most appropriate for the issue. You have no context to provide some degree of assessment.”
The narrative put forth by the professionals and support organizations does too little to educate parents in a way that enables them to make informed decisions around therapy. A common message directed to parents is that early intervention, the sooner the better, will have a better chance of being effective. This can be true, but what do they mean when they say “early intervention” and what do they mean by “effective?” The fact is 20% of children who stutter will stutter into adulthood, with or without therapy, and to-date, we only have a vague indicators as to which children that will be. For those I interviewed, too often early intervention contributed to outcomes that were more challenging that the stutter itself, and actually impeded the capacity for living a full and engaged life. Early intervention became something from which they had to recover. Many reclaimed their lives through therapy focused on acceptance and avoidance reduction, and wished they could have done it sooner:
“There needs to be more out there about why an avoidance reduction approach is better for your kids mentally.”
and
“I would have liked to have done therapy focused on acceptance early on in life. It would have made my life a lot easier in terms of my speech and communication.”
The unrelenting message was the wish to access therapy that would first do no harm, and secondly, improve quality of life for everyone involved. Voices Unearthed helps those navigating intervention options to articulate what it is they really want. As one interviewee put it:
“In hindsight, I understand I wanted to work on effective communication that would be joyful and lead to confidence and success. That’s what I really meant when I said, ‘I want to stop stuttering’ but I didn’t have the language to say what I really needed and neither did the people who were trying to help me.”
VoiceS Unearthed speaks to the radical shift needed in stuttering therapy – especially for children and their families. It’s time.
By Doreen (Dori) Lenz Holte
Author and Parent Advocate
Voice and VoiceS Unearthed
Minneapolis, Minnesota, U.S.A.