The Power of Purposeful Communication

This week Speech and Language Pathologist and DIR Expert Trainer Joleen Fernald, who also has her PhD, joins us from just outside of Tampa, Florida. She specializes in Selective Mutism and Alternative and Augmentative Communication (AAC) Intervention and is the Selective Mutism Clinic Coordinator at Joleen R. Fernald Pediatric Therapy Services, an Adjunct Professor at Granite State College, and the co-founder of Reconnections Education Center. She is also releasing a new book in a few weeks about Selective Mutism. I’m thrilled to finally have her as a guest on the podcast!

Reconnections Education Center

So many parents of Joleen’s speech and language therapy clients would ask her to start a school so their children could feel safe and confident at school. They appreciated how she encouraged their kids, supported their social-emotional development and met them where they are developmentally. After some hesitation, she and her co-founder finally decided that their area indeed needed a DIR-informed school program and opened up in 2019. They started small with just five students. This school year they have 11 students and they’re up to 25 who are registered for next school year. She says it’s been super exciting to see the desire for a more developmentally-based program for supporting children with many different individual differences.

They don’t look at a diagnosis per se, but at the child’s entire DIR profile. She named it Reconnections because REC stands for Regulating, Engaging, and Connecting as they aim to connect kids with their peers and others in their lives. It’s referring to the first Functional Emotional Developmental Capacities (FEDCs) that they focus on at the school. They incorporate the Developmental, Individual differences, Relationship-based (DIR) Model in every classroom and the staff is trained in the model through the International Council on Development and Learning (ICDL). It’s something more and more parents are asking for and seeking out when the norm out there is behavioural models.

Trauma

I asked Joleen what her biggest take-aways have been in the first two years of running the school. She said it’s been how traumatized children and families have been in their prior programs. They might have been private or public schools using behavioural models and strategies including punishment. Families were always hearing how bad or misbehaving their kids were and what their kids can’t do as opposed to looking at their capacities and what they can achieve, when given the right supports, Joleen explains. Joleen’s school has a 1:3 teacher to student ratio as well as Floortime players who are part of the teaching assistant role who support the kids. 

Reconnections doesn’t require that kids sit at a desk, Joleen continues. If they want to do their math on a swing, they can. If an obstacle course helps them learn because they need to move, then maybe they’ll do their sight words through an obstacle course, for instance. It really hit Joleen how much families needed the level of support of meeting their children where they are at and being creative to meet their needs and how horribly treated they were and traumatized before coming to Reconnections. 

Parent Involvement

I asked if Joleen had noticed parents who had more of a behavioural style as well coming around as they saw their child supported developmentally, respecting their individual differences and through the relationships. Yes, she said. Parents are an integral part of their program and they offer Caregiver Connections once per month with different topics to increase awareness and education around developmentally- and relationship-based ideas and concepts, she says. Some of the parents are coming in with backgrounds of using sticker or reward charts, or red light, yellow light, green light practices in a classroom when your child gets too loud, for instance, or withholding from the child until the child speaks.

She finds, though, that when they support those families, they come around and she cannot minimize the amount of trauma and negative experiences they have had. Joleen can relate. Her adult autistic daughter had a very negative experience in the public school system. Even with her professional background and experience in education, she struggled to support and advocate for her daughter in the public school system. While Joleen acknowledges that there are good public school services, the families at her school did not have those positive experiences. At Reconnections, the parents get to see how well their kids do in school and their kids want to come to school.

Tuition and Summer Program

The school is privately funded but in the state of Florida, there are two scholarships families can access: the McKay Scholarship or the Gardiner Scholarship. If the funding falls short of the yearly tuition, they will divide up the balance across the 9-month school year. Last year they offered a summer camp style program, even through Covid, but this summer they are offering individual Floortime sessions as a replacement.

Career Inspiration

Joleen’s adult daughter was only recently diagnosed with autism at age 19, as females are often diagnosed much later, but she was diagnosed at age 3 with selective mutism. But there were always the underlying anxiety and sensory challenges. She was always a little bit quirky with interests that didn’t match up with those of her peers, Joleen tells us, and passions that didn’t match the age or stage she was going through. Joleen didn’t care as much about diagnosis as where her capacities were and her individual differences, and her daughter felt the same.

As an adult, Joleen’s daughter felt that she could advocate for herself in a much different way if she had her autism diagnosis, now that people are more educated and hopefully more understanding around the individual variability that comes with autism. The stereotypes never fit for her, but now as a young woman with the movement of women and self-advocates, she feels much more empowered to advocate for herself in a more powerful way at 20 years old. Joleen was part of the first cohort of ICDL’s graduate program started by Dr. Greenspan (which is now through Fielding University). In her DIR certification process, she realized that so much of what they had done with her daughter was part of the model and framework of DIR. 

Selective Mutism

When Joleen’s daughter was diagnosed at age 3, she had little knowledge about selective mutism despite having been a Speech and Language Pathologist for about 4-5 years already. Her daughter was hyperverbal and very communicative at home, but she would withdraw, shut down, and avert eye contact when they left their home. The preschool teacher suggested she was autistic but Joleen saw how she was at home and didn’t think she was. It turns out Selective Mutism (SM) is an anxiety-based disorder where the diagnosis requires you are very verbal in at least one setting and that you are mute and unable to speak in at least one other setting.

When Joleen began to seek support for her, most didn’t work with children as young as age 3, or they didn’t really have any background in selective mutism. As a result, Joleen began researching it and getting involved with the national organizations. She decided that if what she did was working for her daughter, perhaps it will work for other families, too. So she developed an assessment and treatment clinic for Selective Mutism! And because what worked for her daughter, she continues, was a multi-disciplinary, developmentally-based approach, she chose to use that model for all of the clients coming in–and this was before she was trained in the DIR Model.

Joleen has now to date seen over 2,000 children who have been successful at remediating their selective mutism! It’s also what led her to DIR/Floortime. Most of the treatments for Selective Mutism were behaviourally-based, coming from a psychological perspective. The idea is to reward for ‘brave talking’. This approach did not work for Joleen’s daughter, because if she had been able to brave talk, she would have. She was unable to overcome that anxiety that coordinated with her sensory processing. All it did was beat her down and make her feel worse about herself, Joleen explains.

The Six ‘F’ Words

When children speak freely and fluently at home, but don’t in other environments, it would be easy for parents and others to think that it is by choice. Joleen explains that this is not the case with selective mutism. Your nervous system will literally go into fight/flight/freeze and part of the freeze can be with the vocal system or it can even be a full physical paralysis of the body. You can also fawn, which is when you go along with others so the spotlight is off of you. 

You can become very fatigued due to the cognitive load. You can also experience flooding where you’re overcome with emotions and might have a meltdown. It’s not a conscious choice or ‘selection’ that children with selective mutism cannot speak when overcome with one of these six ‘F’ words. It’s not a specific phobia or fear of speaking, Joleen explains, although some kids also have that as well.

Situational Mutism

If you have a diagnosis of autism, you cannot have a diagnosis of Selective Mutism. However, there are many on the spectrum who identify as having Situational Mutism which is essentially what Selective Mutism is. In these situations, you may have to rely on Alternative and Augmentative Communication (AAC). Many of Joleen’s client use text-to-speech or other apps to communicate when they become overwhelmed. I wondered if my son experiences situational mutism in certain situations and gave Joleen an example of how he flees when expected to interact with people he is very familiar with outside of the home.

Joleen responds that it may be sensory overload in that moment for him. The vestibular system is the police officer in the brain that directs all of the sensory input, she explains, and so all of his visual, auditory and other sensory input is guided by his vestibular system which has to do with our inner ear and our sense of balance. In her clients, Joleen has found that if the system is on overload it can no longer direct the input so the child is overwhelmed and wants to flee (or one of the other ‘F’ words). It may or may not be Situational Mutism, Joleen says, but Situational Mutism is very common and we need to get the word out about it, she asserts.

New Book, Website, and Training

Joleen is working on a comprehensive guide to Selective Mutism (SM) that will incorporate the whole entire profile idea of a child. What’s available now is often from psychologists and social workers who focus on the ‘not talking’ versus DIR clinicians who really look at the entire profile. The book will cover what DIR is, then look at the typical individual differences that tend to occur in individuals with Selective Mutism, and what different types of interventions support them, Joleen says. It can include hippotherapy or interactive listening systems, or pharmaceuticals–a chapter which will be written from a DIR lens by Dr. Joshua Feder.

Many of the contributors are DIR practitioners who are training leaders with ICDL, including for the sensory and motor systems, and Joleen will do the majority of the Speech and Language sections with a colleague. The book will also have an accompanying companion website so that when she is discussing the first Functional Emotional Developmental Capacity, you can go to the website to see a video of what that looks like in a child with Selective Mutism. When she’s talking about social problem-solving or doing multi-step sequencing in FEDC 4, you’ll be able to see another video. They’ll also provide webinars and training as well.

Joleen is very excited about this new book and project so that she can bring DIR Selective Mutism to the world so that families have an alternative to behaviourally-based interventions for SM. They are self-publishing which will allow them to update and add as new research becomes available, for example. I suggested that it might be helpful to have a section written by her daughter about her experience. They have discussed it. Her daughter has started her own blog to share and empower. Joleen also wants to discuss the sibling perspective as well. Stay tuned for the release of the new website at Joleen’s website.

Thank you to Joleen Fernald for sharing her expertise with us and telling us about her DIR/Floortime school in Florida. You can also follow Joleen on her Facebook page or her Instagram. If you enjoyed and found this blog or podcast useful and helpful, please consider sharing it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast where Joleen answers parent questions from Affect Autism members.

Until next week, here’s to affecting autism through playful interactions!