"I feel like we're sliding backwards. It's like we can't ever get ahead."
A parent shared this sentiment with me a few days ago, as we talked about the incredibly challenging week she'd just experienced with her child. My heart went out to her immediately, knowing how discouraging it is to feel as though you can't possibly work any harder. How daunting it is, with everything this unique parenting journey requires — patience, empathy, accommodations, controlling your own reactivity (to name just a few) — to not see the results that any reasonable person would expect.
I've worked with this parent for almost two years now. I can clearly see the progress that her family has made; the ways in which her child has settled (meaning: experiencing less-challenging behavioral symptoms); the ways she and her partner have come together in their parenting; the ways they have both slowly eased into acceptance of their child. It's incredible, actually — the progress they've made with their child — and it was heartbreaking to me that she couldn't see it in the moment she needed that hope the most.
We’re sliding backwards. Feels like we can't ever get ahead…
So I shared my observations and perspective with this parent, reminding her of what it was like when we first met and she was first exposed to a brain-first approach. I then pointed out how she's now able to reframe behaviors so quickly on her own, without any need for discussion with me. I encouraged her to reflect on the connection she has with her child despite the challenges, a connection she's worked so hard to build. And I helped her see the behavioral symptoms more clearly -- how they have greatly diminished in frequency and intensity over time, and why they might be escalating at this particular moment in their lives.
The kind of progress we are focused on, it happens slowly and over an extended period of time.
As we talked, I could see this parent begin to take hold of what I was saying, and really believe it for herself. She began to gain perspective again on just how far they had all come over the past few years.
This isn't the only parent who has voiced frustration and hopelessness from time-to-time, and I completely get where they're coming from. The kind of progress we're focused on, it happens slowly and over an extended period. It's a marathon, not a sprint. Taking the long-view is key to staying regulated, remaining hopeful, and keeping perspective.
As I thought more about this idea of how we measure progress, it occurred to me that like every other aspect of this parenting journey, this too is different than a typical parent’s experience. And it’s likely much different than we ever imagined before becoming parents. It requires a different measuring stick. We cannot determine our children’s “successes” in the way parents of neurotypical children do, because our children’s successes look different. They are subtler at times, easily overlooked by those who don’t know all the moments (that add up to weeks, then months, then years) of hard work that went into your child being where they are today. They can’t see the constant setbacks your child experiences as they work harder than other children around them, simply to survive their day. So, we need to create our own measurement of success. And even though you and I might share a similar parenting experience, yours will look different than mine, each tailored to our own situation and unique child.
With that in mind, what does progress look like?
As I became increasingly curious about this idea of what it means to measure progress when you’re parenting a child with brain-based differences and challenging behavioral symptoms, I reached out to those on my email list and asked them this question: “What does progress look like to you?”
These are some of the thoughts they shared:
“I notice that fear, frustration and isolation no longer dominate my life or our family’s life. I’ve learned to accept what is (most of the time!), and know that even though it’s hard at times, it’s going to be okay.”
“My child is no longer a child, but a young adult. When I look back to her younger years, I sometimes wonder how we survived. Today she isn’t without struggles, but she is much more regulated. We have a good relationship. I couldn’t have imagined this outcome 10 years ago.”
“My child is now able to tell me his concerns and what he’s feeling. Just a few years ago he would explode and could not even begin to articulate why. This has happened slowly, but is clear progress.”
“I’ve noticed the most progress in how I respond to my child when he is upset. I am able to stay regulated more often. I don’t take it so personally. It takes me less time to recover from a challenging episode. All of this helps tremendously when trying to help him calm down.”
“I realized at some point that I had become completely disconnected from my child. I didn’t feel much of anything for him — good or bad. That was really scary, and I wasn’t sure if I could move out of that space. But I began seeing a counselor who has helped me heal from what I now know was complete burnout, and I am in such a better place as a parent because of it. I can actually experience moments of connection and joy with my child, which had not happened for years.”
If you’re feeling like the progress you’re seeking isn’t coming quickly enough, and in turn, that is leaving you feeling inadequate, hopeless, or discouraged, I want to let you know you’re not alone in that experience. The transformation you are working to create in your family is complex, and moving through and unraveling complexity takes time.
This is why I want to encourage you — as I did with the parent I spoke to a few days ago — to take a few moments now and again to reflect, not just on where you’re headed, but on where you’ve been. Celebrate every victory, every measure of progress, that comes to mind, big and small.
Each one is meaningful.
Interested in learning more about how your child’s unique brain works differently and what this means in terms of helping them experience fewer challenging behaviors? You can visit eileendevine.com to learn about the Brain First Parenting program and The Resilience Room membership community.
Eileen Devine works in Portland, OR as a therapist and coach supporting parents of children with special needs. She is also a consultant for families impacted by FASD, PANS/PANDAS and other neurobehavioral conditions through her private practice, working with families nationally and internationally. She lives with her husband and two amazing kids, one of whom happens to live with FASD. For more information, visit eileendevine.com.