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By Jennifer Abbanat

Some Background About Our Journey

I was recently asked what I wish professionals understood during our family’s search for answers, understanding and support while navigating the challenges of our son’s unique needs.  Over the past decade, I’ve contemplated this question numerous times, and now, as my child enters his late teens, I find myself reflecting on the insights gained from our tumultuous 19-year journey.

It’s a blur. It’s been stressful. It’s been something that no professional could possibly prepare anyone for. Why? Each child arrives with a unique blueprint, shaped by a myriad of influences. What often goes unacknowledged is the impact of factors beyond parental control; developmental hurdles, medical intricacies, and the baffling sensation of things not “going right” from day one.

I say “go right” in parentheses, because this was certainly an idea that I could not comprehend nor prepare for things to “not go right”. My pregnancy was “normal”, no complications or anything found to be “abnormal.”  As most parents expect, we were going to be having a healthy baby when they arrived in this world. 

We had one child already and for the most part, things went okay/typical in her own unique way in the early days, months, years.  But when our son was born, it was all different starting from the first few days of life.  It was very different.  We recognized this from the perspective that each child is unique. so we expected things to be different within a “normal” range for a new baby.

But something was “off” with our son. Something wasn’t “right”.  It was difficult to pinpoint. But we did understand the early days are often challenging when bringing a newborn home to a house with a sibling. It was all new for us now that we had added a member to our family.  But, that wasn’t it either.  

These were ideas that we felt comfortable with as Parents

Going with the flow.  

Following our baby’s cues to figure out what he was trying to communicate?  

What was the need he was trying to communicate to us; hungry, tired, diaper change, happy, sad?  

We were responsive parents and this was an important part of what type of parents we wanted to be for our kids.  It was important to us as a couple, and as new parents.  

His cues to get a need met were more constant with not a lot of “relief” as exhibited through constant crying and fussiness, vomiting, screaming at times, happy one minute and then appearing in agony the next, not sleeping and never content or soothed for very long.  There were so many “signals” and we didn’t understand what they were trying to tell us, and why he was expressing so much “discomfort”.

Very little seemed to help him, and often we felt like we were entering a level of parenting we were unprepared for.  We wouldn’t know for a little while that in fact, he was suffering.  He was in pain.  There was a medical issue that was the underlying cause of everything that he, and we, were experiencing.

The details of the medical issue are not important to what I am writing. The conventional and familiar proved ineffective. Intuition failed us.  We needed support and answers as to what was causing our baby boy’s discomfort and poor development. Things just weren’t “going right” and we were now entering a new world of figuring out “what was going on?”

Uncharted Waters

We were in uncharted waters; rough seas and rocky paths. “Jumping off a cliff while blindfolded” kind of analogies come to mind when I reflect back.  But knowing what I now know, experiencing what we have experienced, learning what we have learned, has given me great pause to be able to definitively say what I wish professionals across the continuum of services would have known and shared with us. 

What I Wish was Shared with us About Caregiver Burnout

To start;

Yes, our child has some medical and developmental disabilities.  

Yes, our child needed some medical procedures, specialists, and extra support to help him through these early years.  

BUT, we were never told, as his parents, the toll this would take on us. We didn’t receive information about how to get support, so that we could be the supportive loving, present caregivers that our son (and daughter) needed.

Nobody discussed caregiver stress, caregiver overwhelm, caregiver burnout.  It was as if we were just supposed to endure numerous hospitalizations, invasive procedures, daily medicine regiments, a child who was in chronic pain, doctor’s appointments, instead of play dates. It was as if we were still to be the unconditionally present, attuned, loving parents our children deserved. And we deserved to be proud parents to these two children.  

This wasn’t making sense and it was not landing in my nervous system well.  How could it?  We were entering a land that no one had discovered before.  We were figuring things out as we went, and this required many “re-dos” because we were only as good as the care team my child had.  And yes, this at times required us to find new team members.  

This “re-do” is actually what saved our son’s life.  Which was our first big lesson in this wild journey of parenting a child with unique needs.  If something doesn’t feel right, don’t accept it.  As his parents, we knew our child.  We didn’t yet understand everything, but we did know when something was wrong.  

Caregiver wellbeing, stress, and energy is not often discussed in situations such as ours.  I have talked with numerous families about this topic, trying to gain a better understanding of how to best support parents and caregivers in situations where “things aren’t routine”. And I have learned it is very common. Parents are not provided information about how to be the best parent and caregiver for their child.

As caregivers, we cannot care for the children who need us, if we ourselves are not well cared for. There is not a parent or caregiver that doesn’t try to move mountains in order to get the help, support and resources that their child needs.  This was us.  But it was at a high cost due to the stress we endured for so long.

The cost was to our own brain and body state.  We were experiencing tremendous stress, a lot of uncertainty and often fought an uphill battle with insurance companies, medical systems, and extraordinary expenses. The very  systems that are in place to support care, often contribute to additional stress.  (I’m not even going to touch on our experiences with the education system. That is for another day).

How do parents and caregivers find balance and the necessary energy to keep up with all the demands, while experiencing the incredible amount of stress that is placed on them?

What I wish we had been told was the importance of “taking care of ourselves”; that the stress is very difficult, but we needed to prioritize our wellbeing for the sake of being the caregivers our children needed. That self care is not selfish, it’s necessary. 

I wish it was shared with us that we cannot be at our best if we don’t first “put on our own oxygen masks”.  That, as difficult as every minute of every day was, we mattered and we needed to surround ourselves with support and resources that could help us. 

I wish we were told that we didn’t have to be everything, to everyone.  In fact, it’s impossible.  We only needed to be “good enough”, especially for our own kids.  

We couldn’t take away his early adverse experiences (though I would have done anything if I could). We couldn’t make miracles happen with his health challenges. We couldn’t take all his discomfort and pain away (but again, we would have tried anything).  But what we could do was actually much simpler.  It isn’t selfish, and is absolutely essential for the wellbeing of our family.

Self-Care for the Caregiver Includes Shanker Self-Reg®

Self-care is about recognizing in ourselves our own stress level and dysregulation while ensuring we do not transfer our big emotions onto our children.  It seems so simple now that I have gained a better understanding about regulation, brain state, dependent functioning, self-regulation, co-regulation, emotional contagion, trauma and acceptance of what is out of our control.  

The vocabulary alone was new to us.  But none of this was shared through professional channels.  It was my curiosity to continuously searching for ways to support our son, all of our children, our family, and to search for what resources were available to help us.

My curiosity led me to books like Stuart Shanker’s Self-Reg: How to Help Your Child (and You) Break the Stress Cycle and Successfully Engage with Life. This was invaluable to us and  was not provided to us from our expansive medical and the therapeutic team for our child.  

But what if it had been many years before I discovered it on my own?  What if our professional team was familiar with the Shanker Self-Reg framework and the neuroscience that is explained so well for even lay people to understand?  What if someone years before I found this resource had recommended the Shanker Self-Reg® concepts and how they could help us, the caregivers, better understand what we were experiencing? What if we knew we were inadvertently contributing to our child’s stress? And the best part, what if we had known how to recognize the different stresses that come through the 5 domains: Biological, Emotion, Cognitive, Social, & Pro-Social.

This framework allowed us to see our own stress within ourselves, and how it didn’t help solve problems, or improve challenging situations. As parents, this was our biggest leap forward.

We needed to first understand our own stressors, and reduce the ones that we could. By reducing some of the stress, it allowed us some space to be able to reflect.  To look back at what worked to support our child, what didn’t work, and come up with ideas that we could use in the future.  

We can’t change his chronic medical issues.  But we can adapt and develop strategies that help us be more flexible, patient and understanding when he is in his own state of dysregulation.  This modeling through co-regulation is how we can help rewire his brain to be able to have more experiences of connection and fewer experiences of being in a state of protection.  This is what Dr. Stephen Porges, refers to as, “re-tuning the nervous system”.  This is neuroplasticity in action.

No one ever told us that when our child is dysregulated, only our regulated nervous system can bring a felt sense of safety, connection and compassion. That we, as his parents, can “calm” and regulate his nervous system and bring his body and mind back to a state of integration.  If we were told this, it would have saved us a significant amount of tears, heartache and many feelings of hopelessness. 

What We Learned Along our Parenting and Caregiving Journey

When we reflect back, we recognize times when things didn’t have to be as hard as they were.  We recognize that we had more control over things than we previously thought. Not control over our child; control over how we see our child when he is struggling and control over our own thoughts, feelings and behaviours.  This is where our focus needed to be; on ourselves and finding the balance we needed to have the capacity to be the safe, attuned, patient caregivers that our growing family needed. 

This reunion of “ourselves” was the restoration necessary to find balance again. To restore our energy levels while increasing our capacity to better recognize within ourselves when we needed to “check in” with our own brain-body state and where our attention was needed.  What did we need to do to feel “whole again”?

This was the revelation we needed as humans.  This was not something that we grew up understanding, or experienced or were taught; quite the opposite. We both grew up in very “traditional” parenting style households, which I now realize did not set us up to be the best parents that our kids and our family needed.  We ourselves lacked a necessary skill-set.  

It was the extraordinary circumstances with our son and his very unique and challenging needs that gave us the courage to look beyond what we knew, get uncomfortable, and to never stop searching for answers, support and resources that would help restore our family’s sense of balance, our sense of safety and our sense of hope for the future.

This experience led us on a path we could never have predicted.  It was through our new found understanding of the Shanker Self-Reg® framework, which is grounded in current neuroscience, attachment theory, polyvagal theory, human physiology, and the science of stress and homeostasis that has allowed us to “see our child differently”, and therefore, “see a different child”. 

It has given us the ability to reframe what we once didn’t understand, and use the ideas of Self-Reg to make sense of what we observe. It allows us to approach these situations with the questions “WHY” and “WHY NOW”?  This is fundamental to beginning to see our children not as being difficult or defiant, but as struggling and having a hard time.  

It allowed us to see children who are:

Needing our support.

Needing our co-regulation.

Needing our compassion, not our judgment or punishment.   

Shanker Self-Reg® has been the pathway that finally brought us some resilience, healing, and opportunities to experience joy.  After all, this is a significant part of the foundation necessary for human growth, human potential, human wellbeing and human capacity to find moments of joy within extraordinary circumstances.

This is what I wish we were told way back when:

That our challenges do not dictate our destiny.  

That there is always hope if we are open enough to look for it.  

That we are our child’s best advocate.

That, as Stuart Shanker says “There is no such thing as a bad kid.” My child is an example of this. 

That immense possibilities await every child who started life with a rough start.  

I would like to point out something that might have been missed if you are new to Shanker Self-Reg® or unfamiliar with its framework.  The work we did towards balance, improved wellbeing and understanding better ways to support our child were not something that we “changed” in our son.  It was not something he needed to work on or go to therapy for.  There wasn’t a magic pill or something to fix.  

It was our work to do. 

It was our mindset to change.  

It was our  paradigm shift to being the parents our child needed.  

This was not our child’s burden.  This was about us, our nervous systems and understanding what we were observing.  It was about us becoming more curious and clear on what his “communication” was actually trying to convey.  

Behaviors are communication, even if we don’t understand what the message is. This was about us and how we can better work with him to co-regulate and to restore balance within all of us.

Self-Reg helps us grow our capacity to show up for our kids in a way that helps them be their best in this one precious life we all have.  

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