Featured

Fueling visible change with communications

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.

Making change visible checklist

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.
Doodlebug with her speech-generating device we call her “talker”.

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.

A podcast inspiring parents to nurture kickass connections with the professionals helping their children succeed.

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.

 

Featured

Parents as partners, Thankful to be part of the solution

Originally posted on Mickie’s Miracles.

I am full of reflection this time of year. On the heels of Epilepsy Awareness Month, while we approach a new year, I am grateful for three years of seizure freedom for my baby girl. I am grateful to a team of doctors, nurses, epileptologists, and neurosurgeons, and a dedicated Epilepsy Monitoring Unit and an amazing Child Life department, who all worked together so we could have these past six years of increasing independence and progress. I am grateful for our family’s health in spite of so much uncertainty. And while we remain cautious and vigilant, we also know there will be more good reasons to celebrate in our future.

A gift to myself

So, this year, I am allowing myself my own little celebration — the gift of dreaming.I am full of reflection this time of year. On the heels of Epilepsy Awareness Month, while we approach a new year, I am grateful for three years of seizure freedom for my baby girl. I am grateful to a team of doctors, nurses, epileptologists, and neurosurgeons, and a dedicated Epilepsy Monitoring Unit and an amazing Child Life department, who all worked together so we could have these past six years of increasing independence and progress.

I am grateful for our family’s health in spite of so much uncertainty. And while we remain cautious and vigilant, we also know there will be more good reasons to celebrate in our future. So, this year, I am allowing myself my own little celebration — the gift of dreaming.

Image for post

I imagine a day where data tells me how my young adult daughter is doing. Ambitiously, I picture her driving on her own, maybe even living without me. (I know we don’t want them to drive too soon, but for many with epilepsy it’s much scarier and more complicated than just taking a driver’s test.) Only eight years old today, the same girl in my dreams, lives with a mix of daily life challenges, learning differences, and related health conditions, that tend to block these possibilities from entering my mind.

I dream of innovation for epilepsy

In my dream, some sort of amazing personal health innovation has made it possible for her, and her family, to not live in fear. That is the dream I sometimes allow myself to have. She is a complex care case, which presents many challenges. Like the 470,000 families in the U.S. with children diagnosed with epilepsy, there are so many obstacles our children face. So for many of us, we hesitate to dream. Our feelings are more tied to fear, anxiety and frustration for not having any way to control the disease, the beast that is epilepsy.

It’s hard to say exactly what would help my daughter live independently, but I believe a solution is out there. Consider all the progress in the past few years — we have personal health tracking devices, (AKA wearables, think Fitbits and Apple Health), connected cars with artificial intelligence, improved mobile app accessibility and adaptive tech advancements through voice command, all merging with how easy it is to access real-time data in the cloud. Yes, it is a mouthful, and it can make your head hurt sometimes, yet I believe these are the innovations we should follow. There will be a spark sometime soon, and then there will be a break-through for those living with epilepsy.

Why build a dream dependent on so much technology? I say why not?! If people with diabetes can have automated digital insulin pumps, and we can provide maternity care through a mobile sonogram, I have hope there is more for seizure monitoring and personal health management, as well.

How do we get there? Parents and patients are part of the future solution. We can even start now. We can continue the work already in progress by great organizations like The Epilepsy FoundationEnd Epilepsy, and of course Mickie’s Miracles.

As parents, we can be part of supporting the research, enabling the advocacy and building the awareness for epilepsy.

Research

We can forge new paths for the ultimate patient experience by sharing research and having various health causes come together to amplify our collective voices.

For some, research starts with honing the questions we have, and picking a problem to solve. Ideally, research foundations and universities around the world will continue expanding how they incorporate advocates and patients into their studies. Researchers can better understand and analyze what it’s like living with the condition, even if seizures are managed with medication or implanted devices. Patient advocacy groups like WeGo Health and Patients Rising have formed just for this purpose. This is a great place for parents to connect — for focus groups and patient research studies — to learn, and maybe even participate.

There is so much potential when more minds come together. We can encourage joint research and study the unique connections between different health relationships, like metabolic disorders and epilepsy, genetics and epilepsy, and my personal focus, epilepsy and autism.

More than one study has found a higher likelihood of epilepsy in children presenting with autism spectrum disorder, and it is widely accepted that autism is more common in people with epilepsy. This kind of research raises unique questions — it also could harbor answers. New therapies and treatments may benefit thousands of children. Why not then dream for more coordinated solutions, more research and innovation?

Advocacy

Sharing our stories is a key part to advocating for help, and for getting answers. The more we put the details of our children’s lives into words, the more product developers, scientists and policy makers can understand what our epilepsy warriors need.

Advocacy is also expressing our observations as parents, what it feels like, and what it looks like. When we communicate our emotional and mental state, we are making it real for others. We want these innovators and researchers to think about how the medicine that blocks the seizures, also blocks our children’s words, and their thoughts. Or how days after a seizure, there are still lingering effects in lack of motor control or memory loss. It’s important to share how our family routines change and describe all the life hacks we have created to adapt the world for our children.

In my family, we worry when it’s hot outside because of dehydration being a trigger for seizures, so we avoid the park and outdoor sports. It’s a vicious cycle though, because then we worry our little one doesn’t get enough exercise. That has led us to create indoor exercise and sensory stations in our home. It’s not always practical in a traditional home setting, but we’ve made it work. Advocating can help other families see they are not alone in these unique situations. There are always multiple steps to think through, to solve these complex solutions. That is why it’s so important to share. It’s okay to need help. We want the innovation and research out there working to solve these problems with us.

Some parents may not feel they have anything to contribute that hasn’t already been said before. Maybe it’s best for some to start only sharing their stories with their immediate community. And that’s ok, too.

As parents of small children, we don’t yet know what our babies are feeling each day, but we can sense their fear or pain. We DO have important knowledge in treating our children. And that is how we are part of the solution. That is what we can share. Even when we think it’s been done before, it’s ok to share it again. In being part of a hospital system that believes in family-centered care, I have realized how powerful my voice is as a tool in my child’s care. I have learned to partner with our care team to be heard, and to practice active listening, so I can find the right moment to offer important details and observations and be part of the solution.

One last thought on our advocacy role as parents. Advocacy doesn’t start and stop with the medicine and the patient. It’s equally important to share what the life of the siblings can be like. Our empathetic brothers and sisters can be the best champions of the cause, but so many carry survivor guilt and feelings of abandonment that require mental health support. They don’t want to burden anyone, so they keep their feelings inside. These are all aspects of living with epilepsy and they all deserve to be heard.

Image for post
Taken from Instagram account Andrea Mitchell

Awareness

When we bring the research and advocacy together, we turn it into powerful information and education. This is how we as parents can build awareness. I see this as a separate effort from directly advocating for your patient and family needs. When we share our stories, and build up a support network, we are mostly reaching our close circles. Awareness is about expanding the reach, and shining light on the stigmas and realities. Awareness requires openness and a lot of listening and patience.

This is when many parents may feel most comfortable by sharing the facts and the officially documented stories of others, rather than vulnerably putting their own concerns into the public. This is still a great way to start contributing to making change happen. We can all explain how our child is that 1 in 26 that the research has calculated. We can choose whatever statistic or story that describes our situation, and make it our drum beat.

We can each participate in a way that suits our family at that time. My family has strolled and stomped through the zoo. We have had fun at galas and fundraisers, and we have made personal videos of our pain and our celebrations. Some years, we just can’t do any more than post the facts. It’s all ok, and it’s all building awareness.

As parents, we can feel hopeless or lost through this journey. We can feel completely worthless, not being able to protect our child. We can feel anger and frustration because we can’t find the answers. We don’t have to do it alone. And the reality is, the more we share and let others in, the more likely we are going to get to be part of the solution.

Why not dream for a better life for our children, and let the research, advocacy and awareness come together to spark that innovation. I say why not dream big?

AGREED OR NOT, LET’S DISCUSS. If not here, you can also find me on Instagram. Viz.able

Six word story: Courageous

This week’s self reflection comes from spending a lot of time working up the courage to put my ideas out there for the Internet archives to remember forever. I’ve been asking myself why do I put so much weight on sharing these big ideas for change. I’ve outlined in my head all my reasons for moving forward…

I am fully equipped to listen humbly and learn and admit a wrong and be willing to grow.

I want to work with others who are also ready for that tough kind of learning and growing. To get started in having those future collaborators trust me, I realize they have to hear my real views and see me willing to be vulnerable.

They need to believe I am ready for change.

Courage from experience

So, yesterday, while I was overhauling my personal blog into a website with a purpose, I was reminded of how much I do have in life experiences. I have some funny moments documented, and some very serious ones. I’ve dabbled in veiled advocacy through sharing our family stories, and now I see I can be more straightforward. I have developed well-informed perspectives from research, discussions and lots of living. So why not share it.

I am also experienced in marketing and messaging and connecting with customers. On the same day as I made this self awareness about sharing from life’s experiences, I heard myself saying brilliant things during a client project call.

She speaks from experience. Curious. Courageous. A six word story

Experience from courage

And that’s when it hit me. To be curious, I have to be willing to ask questions, based on experiences, I challenge people and I learn from them. To be willing to share experiences, and ask people to learn from me, I need to be courageous. Vulnerable, and strong, and humble. And courageous.

If you’re working on being courageous, too, I’d love to connect on social or you can reach out here.

What is a six word story?

Some might call it an act of creative expression. Others use it for expressing feelings in therapy or self awareness workshops. You can learn more on the concept by reading Narrative, Tell me a story website.

Six word story: Move

If you’ve never written a six word story, it is sometimes used as a creative exercise or a kind of small group sharing activity.

As I have spent time with my thoughts more and beaten myself up that I don’t know how to self care… yes ironic, I know… I have realized I DO self care.

Sitting frustrated.

Grateful for time.

Move!!

A six word story by Carrie Mamantov

I write.

And I went a loooong stretch without giving myself time to put my thoughts down. But when there isn’t much time, a six word story is a good creative exercise. It can also be a nice little cathartic release. More to come from this one.

Maybe a podcast is the Aha! place for those of us who think better by talking out loud. I started with one idea for building up insights for parents, and am finding it’s just as much about me organizing my thoughts and feelings.

Working out the plan for sharing my six word stories with each podcast. It allows me to synthesize a bunch of feelings and then work on giving the backstory as to why I’m feeling them. Some people meditate. Others run. When I write, I get the thoughts out and I can move on.

What is a six word story?

Some might call it an act of creative expression. Others use it for expressing feelings in therapy or self awareness workshops. You can learn more on the concept by reading Narrative, Tell me a story website.

Listening, a step to finding my true parent advocacy voice

As a parent with a kiddo who currently cannot speak for herself, (we will get there 👊 #IntegrateAAC), I have had many occasions where I have gotten fired up in an effort to protect or speak up for my child. I have tried waiting patiently. That does not mean I have always been effective or clear, or had a good attitude. Recently, I have been thinking about those moments I am not proud of.

Image for post

While practicing mindfulness, I caught myself asking “Am I doing enough?”, it crossed my mind that maybe there IS one area I can be improving.

This month, I have focused on being more present and in that, I have been thinking more about listening. (I have shared many quick thoughts on “Being present” in my Instagram stories.) As part of listening more, I am aware this applies even in the most difficult moments. If there is a heated topic, or a painful emotion surfacing, what can I do first to listen before speaking? Then, when I do speak up it will be with purpose and clear; my true voice.

So for parents who have been on this journey for a while, learning their child’s development and educational needs, while probably also navigating the complexities of multiple therapies and doctor appointments, these thoughts are for you. They are here for us to discuss, if you are in a place like I am, looking to grow myself to better advocate for my child.

Image for post

Listening comes in many forms, there are many experts who write on this topic. You can find some good points from Elle Kaplan and Dr. William Lane right here on Medium. So why read mine?

I’ve been on this mom advocacy journey for almost 9 years, if you start from the first seizure and the first doctor’s conversation. I’ve been a part of a family advisory council at our children’s hospital for the last six, after we settled into our journey and felt we had something to give back. I’ve been on parent panels and presented to professionals at The Institute for Patient and Family Centered Care international conference.

I am also an experienced business communicator who believes in building effective relationships where everyone benefits. Effective relationships look different in the corporate world compared to personal relationships. However, neither of those fit this space where we live as special needs parents.  Which leaves this really unique, gaping hole for those of us who have to be very personal, but on a professional playing field — with teachers and therapists and doctors and child life specialists. All these people have letters after their names, they are experts in their fields. Who are we to question them? It’s a common thought we face as parents. But we are experts in our kiddos. And that is why our voice matters, because our children’s voices matter.

Image for post
Instagram quote from @Viz.able

If that feels familiar, then I have distilled my current state of mind here into three simple acts that can help with those tough moments. I really do want to hear how others have managed through difficult conversations.

  1. Listening is not just with our eyes, so what am I seeing in the moment? Am I rushing to judgment? Am I seeing the whole picture? Am I seeing any stress signs from my child? Is she telling me in her way that she needs my help?
  2. Listening by asking questions first — to the other party — maybe a healthcare provider or maybe a child — asking what is the problem, what are the concerns? And then truly hearing them completely, practicing active listening, before responding.
  3. And maybe the hardest thing to face, listening to myself. This could be in a split second, but most likely it may require at least a few minutes of being still, and focusing to get to the heart of the moment.

Now this self awareness goes both ways. It can push us to speak up more, and it can also give us the strength to pause.

Many moms I have connected with believe in the mommy gut. I have trusted it many times and it has told me something is wrong, speak up! It was the first to sense she was hemorrhaging after brain surgery, and it’s been right more than wrong. And yet, it can sometimes get the better of my emotions.

Image for post

Listening to myself should also mean figuring out what I really want or need in the moment. If I speak too soon, will I confuse things and not have an effective conversation? I have been guilty of this and I have witnessed other parents speak up only to fumble through their words because the emotions are clouding the clarity they feel in their hearts. Luckily, this is a journey and we get to learn and improve as we go.

Communicating effectively is hard. Being an effective communicator while under heavy stress and/or overwhelmed by a huge mess of questions and concerns, just makes it that much harder to find clarity. I really believe this is a key step in parent advocacy — find your true voice by listening first.

Thoughts?

Find me on Instagram at viz.able

Find me in Twitter at redcarrie

Becoming a better listener through modeling AAC

January and February are all about me focusing on being more present in my life, and for my children.

Being present includes listening. That is not just listening with our ears, it’s with our eyes, too.

So here’s an AHA! Moment.

She is listening.

Our little Doodlebug is always listening. Of course she is. But I saw that differently this week.

Of all the good pointers we noted in our Tobii Dynavox free webinar training, here is the big one for me.

Modeling slows our speech down. Modeling makes us pause.

Why is that an Aha! moment?

We are a work in progress as a family incorporating AAC into our lives. We have been on this journey for about six years now.

Modeling makes it easier for her to hear and understand what we are saying because we have to slow down.

We talk fast in this house. It is completely my fault. If you have something to say spit it out… right? That’s how I’ve been raised and influenced and I am having to undo all of that.

We also a butcher a few words. We tend to drop the G. Nothing personal to the language. It’s just a thing we do down here. But I can imagine how hard it is to decipher our back and forth bantering even when she is sitting right by our sides.

Adopting AAC modeling

It slows us down. It makes us pause. It gives her time to process. And it gives her more space to jump into our conversations. It means we are giving her a chance to join in and showing her we want to LISTEN.

If I am brutally honest with myself, I can admit it probably took a year, when she was 5ish, for us to really pick up on the fact that she could reading and listening to us. She had been so locked in her own world and messed up with seizure meds, we thought she might be deaf. She rarely looked up for her name, or when loud noises happened. It just didn’t matter to her. So I think sometimes, we are still working through building her confidence back up — confidence in us, to pay attention, to try to understand. And having to prove to her it’s worth her time to make the effort.

A few more thoughts on this on the opening podcast episode. A lot of focus on listening right now and practicing mindfulness for myself.

A few thoughts stored on my Instagram story.