As I continue to hone my goals for building out a little corner of the Internet here, I debate about how much people want to hear me think out loud. Regardless of how that shakes out, I do believe my purpose is to help parents, and professionals in this space, develop their communication skills.
I don’t mean speech, or writing skills. I mean the soft-skills — the keys to building bridges and creating productive connections with other people.
I’ve outlined what I see as my current purpose for a few reasons. One, it gives me a guiding star to focus my blogging and my topics for the podcast. And it also the beginnings of the blue print for a much larger change effort. Real change takes time to develop. As much as we want to overhaul an entire society right now, there are going to be aspects that will require some nurturing and bridge building. So, these current focus areas will be the steps that lead toward larger change down the road.
Yes, I stand for all efforts around inclusion. I believe parents and healthcare teams deserve more education and awareness around childhood epilepsy. I am an advocate for patient and family-centered care in all medical situations. And yes, I of course want all autism-related conversations to be helpful, educational, and not harmful to anyone in the community. In fact, I have a very long list of causes and beliefs I want to advocate for, but I am realizing it’s consuming my mind to listen to all the beautiful voices out there, and it’s making it hard to create the impact I want to have.
And while any and all kinds of advocacy will open doors for my children, I am choosing to take my approach in smaller steps, some for our family’s benefit, and some to pay it forward to help others.
Fueling visible change with communications is how I plan to maintain the focus. Visible change is something we need to better define in a more inclusive way. Visible doesn’t mean just with our eyes… similar to how I’ve said we need to listen with our eyes, we can observe the need for change with multiple senses as well. Maybe it should be detectable or noticeable change, and we have to evolve from depending on what we can only see, to what we can sense.
The measurable or visible change we need might be the way two people interact without speaking a word or it could be one of those stories where a person in a public place sees a child in sensory need and lies down next to them for emotional support. Visible change could be an entire school or hospital with AAC communication symbols on every door and sign. Or, it just could be when I can tell my daughter is relaxed and feeling included.
So where do we start?
Building up more AAC inclusion
- Technology training and integration is needed in all classrooms and therapy sessions where a nonspeaking child is involved.
- For the first step, that looks like understanding the full landscape of tools out there, and experimenting with the aspects that seem to work with my child.
- Then, through some small successes, it will be a way to build a bridge with our support network. A wider community can work with us so we learn together how to support children like my Doodlebug to operate more independently and in a more included way.
Normalizing sensory differences
Defining sensory differences could be a huge undertaking in itself. So let’s assume it’s everything for now. Everything from a trigger that causes anxiety or fear to a preferred behavior that creates comfort and joy.
With this definition everyone reading this should be able to think of something they prefer or something they detest. Many times this will be linked to one of the five senses. Don’t like mushrooms? Maybe it’s the texture.
- Many sensory differences are visible. I have a hunch that sometimes it’s just the misunderstanding of those sensory challenges that puts people in an uncomfortable spot that blocks their ability to know what to do with the situation.
- Simple truth — sensory seeking behaviors or aversions are nonverbal communications, AKA body language. Not all of it of course, is easy to observe, and that is where we need to expand society’s definition for “nonverbal cues” in communication theory, and make it the default to consider a person’s sensory needs, not the exception.
- This is an area where I am going to look to others to lead, because I am just discovering my own needs in this area and there are so many people to collaborate with. My strength can be in bringing it together for families and professionals to find common ground.
Creating effective connections between parents and professionals
This is my dream.
Facilitating kick-ass connections between parents and professionals is the goal. And I believe it comes with a whole bunch of steps for both sides. Some relationships may be operating in a culture that already supports a “parents as partners” mindset. The gaps in these environments may be smaller, but there is always room for progress.
This is why I’ve started the podcast. Because this is an ongoing dialog that needs to be explored with a mix of perspectives. The vision is to build this from two sides. I will share the research and insights I’m gathering for my own knowledge, and ideally discuss it with others who hold similar questions. And I will complement this by finding people with the expertise who can offer tips in working on specific strengths and weaknesses for building bridges and sustaining relationships with effective communications.
I am currently looking to interview anyone who believes they have discovered how to develop a strong relationship in providing care or education or therapies to a child with complex needs.
If you’re interested in my research work or in my speaking about these insights, let’s connect.
If you’re a parent who is looking to find their voice, to push yourself forward no matter how hard it feels, please reach out. I want to help. And we can learn together because this is a never-ending journey we are on.