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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.

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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 Foundation, End 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.

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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: Together

Feeling heard. Sharing. Creating solutions together.

– A six word story, by Carrie Mamantov

Celebrate the wins, however small. I don’t know who said it first, but I say it often. And in our world of daily challenges and baby steps for milestones, seeing and feeling like progress is happening feels good. Honestly, it feels really good, especially when you know you’ve been working at it.

So, after a short happy dance, and a figurative pat on the back, I was inspired to write a six-word story about the small, but powerful progress I was feeling. This six-word story, “Together”, represents weeks and probably months of developing a relationship that feels productive and inclusive and open. And we’ve done it virtually, I might add.

3 layers parents need to work on to build connections with providers

  1. Respect
  2. Openness
  3. Consistent communications

Layers to building connections

Each relationship with each provider in my daughter’s life is a challenge. This is not because these professionals are difficult. It’s because there are so many layers to the work we have to do. I’ve been analyzing my interactions, the good and the bad, and I’ve outlined some layers to this.

Respect

Do we feel we each believe the other appreciates our work? Do we both understand who the other is as a person, and see our views as valuable?

We can’t trust someone if they don’t respect us, and we probably can’t respect someone we can’t trust.

Sometimes when we simplify things for children, we ended up with the clearest message for all people. The Kids Helpine of Australia does a nice job of outlining everything related to respect and relationships.

Receiving respect from others is important because it helps us to feel safe and to express ourselves.

KidsHelpline.com

Parenting children with disabilities creates challenges. When our feelings are already overwhelmed by all the external factors in our lives, it’s hard for us to focus on our own internal needs. But I’ve read, and learned through time, we also have to still respect ourselves and make sure we believe our words are worthy of hearing. It’s complex stuff. It doesn’t mean it is impossible.

Openness

Do we each feel we can be open? This blends trust and probably some humility to make it work. Not being afraid to share ideas or observations, from both sides, is critical. And many of the professionals we are partnering with are having to work within additional layers of policies and procedures, red tape and even legal requirements, making openness almost impossible to achieve.

In my experience, this ability to achieve openness within the parent/professional connection is also dependent on both sides being in tune with their own needs and emotions. We have to feel ok with sharing these emotions, however raw they are, and however imperfect.

Consistent communications

Communicating with words and charts and in multiple formats and finding the right combo for collaborating is very hard to keep up. The consistency here is where I fall down. I have ideas, and I make videos and I share with the providers, but then I move on. I forget to whom I have shared which little nuggets of observations. Having charts or a scheduled check-in time helps so much with making progress and seeing progress.

There has been a lot of research done on the psychological impact of measuring and tracking progress for any type of goal. It works in business and it definitely works in personal health and fitness — look at the success of Fitbit, and related personal health tracking devices. One study by the American Psychological Association stated it straight out – the more you track, the more you will be successful toward your goal.

Take away: When we see progress, we want to do more, and we can adjust our approach and keep working at it, together! We need respect to begin the sharing and openness to enable communication. Then, we need consistency in how we track and share to work toward the child’s goals.

Invitation to collab

Curious how this works in real life? Me, too. I am very open to ideating on ways to make it easier for parents and professionals to partner on tracking and communicating their successes as a team.

Let’s connect.

Twitter / Instagram

hello@example.com

Normalizing sensory needs, A call to action

Warning: the first video could be a trigger for people with visual sensitivities.

What is your favorite view?

Think about why it really sticks with you. Is it the sounds or smells? Maybe it’s the colors? Are you calm or excited?

This is one of my daughter’s favorite views. It both stimulates and calms her, I think. I’m reading her body language. But I can tell she changes when she is lying on her back, in her big webbed swing.

When we built this wooden pergola for swinging, we didn’t realize we were also creating the perfect complementary environment for swinging and stimming at the same time.

I have been working this past year to really see the world her way, and this is one where I can totally understand how this can be interesting to the eyes, maybe stimulating, maybe calming even.

We all need to take time to think about our sensory preferences and aversions and develop the communication skills to express those with others.

We can normalize sensory differences by sharing what affects us, negatively and positively.

Sensory should not be a bad word

The highly sensitive autistic community doesn’t just have negative sensory needs. Some are sensory seeking, and the good feelings are the ones they want more of.

However, they are not the only ones that experience sensory differences every day. I do. And guess what, you do, too. Embrace it. Deal with it. If you can’t be ok with acknowledging a sensory difference in yourself, you won’t be able to accept it in others. If you aren’t aware of your own sensory challenges, maybe there are underlying needs that have never been addressed. In today’s world of openness and supporting differences, now is the perfect time to learn how to observe, how to manage and how to be more inclusive.

Our girl is still having to learn how to manage the stimming so it doesn’t overwhelm her senses. But, I have also learned we can and SHOULD let our kiddos stim, within healthy boundaries. We can then talk about how it feels, and we can talk through how to avoid getting too much at once, in case that can trigger other overwhelming emotions. Coping mechanisms can be about stimming in moderation. Just like I need to limit my chocolate in take, or how Bubba has a limit on playing Fortnite, we create structure to keep things balance. We are all drawn to something we really like, and we all work to balance those desires in our lives.

Applying a growth mindset to sensory needs

Here’s the aha!

We also all naturally avoid what we don’t like. Just like we choose more of what makes us feel good, we unconsciously avoid those sensations we don’t like. Crowded rooms, dirty dishes, the seam of the socks get rumpled between our toes, these are normal sensations. And we should talk about the why behind our preferences openly and not be afraid to say it “feels” different.

We all NEED to do this. We need to normalize sensory sensitivities because we all have them. We need to normalize talking about those “quirks” not as quirks but as needs. Through this we can acknowledge it’s ok to have these needs. No one should be afraid or embarrassed to say they hate tags or they can’t handle certain smells.

If no one is afraid to discuss sensory difference, then autistic people can feel free to share their extreme sensitivities without being dismissed or ridiculed. It will take time, but it starts with each of us sharing our sensitivities.

Sharing my sensory differences

Taste – My tastebuds have evolved the past 10 years to only like the heavy coffee and the bold wine. Not sure why, but it’s specific. Regular cheap coffee just tastes like water to me. The coffee that most people enjoy makes no sense to me. I have tried, but I can’t drink it.

Touch – I have developed many sensitivities in how things feel that I never used to think about. For one, ice cold water hurts my chest. I prefer room temp whenever I have a choice. Clothing must be soft. Somewhere around the time I had babies and I was thinking about their needs, I started only wearing the softest things for them, then I realized I preferred it, too. Now a plain old cotton t-shirt feels scratchy and I don’t wear them. I only buy the softest blankets for us all to snuggle with on the couch, and oh so many other examples.

Smell – This is becoming the offensive thing that will cause me to leave a room or a building. People’s perfumes really get me, and they never used to. The laundry aisle at the store gives me a headache. The smell of rotting plastic in the sun is a bad one. Makes me gag.

Sounds – This is my big one. All the world’s noises are in my ears. Maybe I used to drown things out better. But lately I catch my shoulders sitting up to my ears and I realize there are just too many competing sounds to synthesize. My family dynamics are definitely not helping in this category. Between the boy and the dog, chasing and laughing and barking and scratching the floor, I might be justified in feeling stressed.

I find at dinner time with the vent going on the stove and microwave beeping and the news droning and the dog barking and the iPad playing 5 Little Ducks… It’s no wonder after 9 hours straight of talking on video calls, I was entering my family room and immediately feeling overwhelmed. And just beat every day.

I have sensory challenges, and that does not make me weird. Maybe, by me always hiding those aversions, I’m hurting myself. Maybe, by not voicing my challenges, I am building up the possibility of lashing out at the ones I love. It’s a challenge, and sharing what I feel is a step toward normalizing these feelings with those who interact with me regularly.

Please note: I do not mean to diminish the extreme nature of the highly sensitive neurodiverse. I have seen the highs and lows in my own child. I call for action to begin the long evolution required to develop a more open community inclusive of all sensitivities.

Why it’s important to observe the sensory needs of others

It wasn’t until Make-A-Wish asked what her favorite things are that I really had to be honest with myself. Did I really know what she likes? Are we guessing all the time and if we do that for this amazing gift, will we get it wrong?

She was 6 going on 7 when we started that discussion. Six years into this life together, but did I know her preferences? I knew she hated the sound of hand dryers and automatic toilet flushes. I knew she hated being cold. I knew she loved chewing in everything and her stretchy blanket was a life saver.

I wasn’t sure about all her sensory needs though. I thought I knew, but they changed in different environments. For this to be a successful experience for the whole family, I had to really pinpoint the most important parts to make sure we could communicate for her, and allow her to say what little she could about her favorite things.

That’s how we ended up here, on a cruise ship in the Caribbean. And it was the best way we could have interpreted and addressed her needs. It was only on this trip that my confidence in truly knowing her needs was confirmed. And it’s also when I realized if all the sensory things are lined up, more of the good and very little of the bad, that she functions in such a calm and focused way.

Those 7 days were our heaven. She was warm, but not hot. She was rocking and stimming in the sand, and the glint of sun in the leaves. She could hear water and nature sounds, and we avoided crowds when possible. We had no need for the iPad to drown out the other stuff.

No, we can’t always live in paradise to avoid the bad sensory stuff. But we can use those breaks to reset and to experiment to find what we need. We can strike a balance. And we can speak up to share how it helped when it was going well.

Without this experience, I may not have been able to believe she could be so calm and centered. We had never seen it last for more than a couple hours. It’s been a metric for good and bad days. It’s also been a data point to consider more sensory adaptions throughout her life.

Our observing led to us being able to share, and that led to a positive experience. Everyone deserves that. People with sensory processing disorders deserve to be considered and understood when they express their needs. And for those who haven’t yet felt welcomed to speak their mind, if we learn to observe others, we can ALL be more understanding to those silently living with sensitivities, communicating to us in subtle nonverbal ways.

A future with awareness and empathy for sensory sensitivities

It’s only been since I was forced to take a break from the long work hours and I chose to be more present and aware of my kiddos’ needs, that I also was able to label my own emotions.

Combining the time to observe and reflect on myself with the positive difference I had seen in my girl got me thinking… if we all acknowledge and accept these unique sensory differences, then maybe society could be more empathetic to the highly sensitive. Society would work harder to create alternate experiences or have more choices to dial up or down sensory input, because we would ALL be talking about how it impacts us.

That is normalizing sensory needs. And it can start with thinking about why you have an affinity or an aversion to certain experiences. Normalizing will come from observing and reflecting, listening and sharing, and then making change happen.

A call to action: Be brave, Share your sensory differences

I invite you to share it. Talk about it with your kids and friends. Let them hear you say you have a real aversion. Let them see you are not ashamed of to explain to another adult why you cannot do something. Let them know it’s normal to have feelings about certain sensory things. Recognize their dislike of a certain food or activity, may not just be due to stubbornness. Support another person’s interest to seek a positive sensory experience. Share openly,  and teach others they, too can share.

Lead by example, sensory differences are not weird, they are normal.

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.

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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.

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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.

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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.

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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